Autistic Hoya

More on Dialogue and Discourse

2012-03-02T16:36:00.006-05:00

Some of you reading this may have read my guest article yesterday at the Autism Blogs Directory entitled "Dialogue is Painful." I argued that in the absence of the ability to isolate an issue from the emotions and experiences of the people discussing it, those participating in dialogue must allow themselves to be open to painful emotional experiences should they enter into dialogue.

That is very different than allowing oneself to be open to unnecessary, uncalled for personal attacks, ad hominems, attempts at de-legitimization, or outright assaults on one's personhood and character. I wrote that those who enter dialogue should expect to be offended and to cause offense -- I did not mean that people with a genuine interest in positive discourse should intentionally cause offense or assume malice on the part of other participants, but that in the course of open expression, offense is bound to occur.

Many of you who read this blog probably know that I am also a student at Georgetown University. This week, a fellow Hoya, Sandra Fluke, who has engaged respectfully and eloquently in public discourse on the important issue of healthcare coverage was faced with a vitriolic assault on her character and identity in the public sphere as a response to expressing her opinions. Conservative pundit Rush Limbaugh decried Sandra as a "slut" and a "prostitute" for arguing that healthcare coverage should include contraception. His public remarks joined an assault of online attacks against a woman for no reason but for expressing an opinion and defending it publicly.

Yet I have never been prouder of my university than I am today.

I read a status update from a fellow student at Georgetown who happens to be a conservative Republican. He writes, "Dear Mr. Rush Limbaugh, I find myself sometimes saddened that you are a fellow conservative. You bring shame and disgrace to not only my proud establishment, Georgetown University, but also to the entire Republican Party. You have insulted a fellow Hoya, and that will take precedence over anything and everything. You ought to be ashamed of yourself."

And then I received an email that was broadcast campus-wide from the Georgetown University President, John DeGioia. Although he disagrees with Sandra over her opinion, he has stated unequivocally that neither our university community nor the nation should ever stand for personal attacks of any kind on another person. Both President DeGioia and my fellow students have proven that it is possible to stand on completely opposite sides of an issue and even be deeply emotionally invested or personally affected, and still maintain honesty and openness while engaging in respectful public discourse.

President DeGioia's email says it all. It's been quoted in part by a number of news media articles, but I've included it here in full.

A message from President DeGioia on Civility and Public Discourse

Georgetown University
Office of the President

March 2, 2012

Dear Members of the Georgetown Community:

There is a legitimate question of public policy before our nation today. In the effort to address the problem of the nearly fifty million Americans who lack health insurance, our lawmakers enacted legislation that seeks to increase access to health care. In recent weeks, a question regarding the breadth of services that will be covered has focused significant public attention on the issue of contraceptive coverage. Many, including the United States Conference of Catholic Bishops, have offered important perspectives on this issue.

In recent days, a law student of Georgetown, Sandra Fluke, offered her testimony regarding the proposed regulations by the Department of Health and Human Services before a group of members of Congress. She was respectful, sincere, and spoke with conviction. She provided a model of civil discourse. This expression of conscience was in the tradition of the deepest values we share as a people. One need not agree with her substantive position to support her right to respectful free expression. And yet, some of those who disagreed with her position – including Rush Limbaugh and commentators throughout the blogosphere and in various other media channels – responded with behavior that can only be described as misogynistic, vitriolic, and a misrepresentation of the position of our student.

In our vibrant and diverse society, there always are important differences that need to be debated, with strong and legitimate beliefs held on all sides of challenging issues. The greatest contribution of the American project is the recognition that together, we can rely on civil discourse to engage the tensions that characterize these difficult issues, and work towards resolutions that balance deeply held and different perspectives. We have learned through painful experience that we must respect one another and we acknowledge that the best way to confront our differences is through constructive public debate. At times, the exercise of one person’s freedom may conflict with another’s. As Americans, we accept that the only answer to our differences is further engagement.

In an earlier time, St. Augustine captured the sense of what is required in civil discourse: “Let us, on both sides, lay aside all arrogance. Let us not, on either side, claim that we have already discovered the truth. Let us seek it together as something which is known to neither of us. For then only may we seek it, lovingly and tranquilly, if there be no bold presumption that it is already discovered and possessed.”

If we, instead, allow coarseness, anger – even hatred – to stand for civil discourse in America, we violate the sacred trust that has been handed down through the generations beginning with our Founders. The values that hold us together as a people require nothing less than eternal vigilance. This is our moment to stand for the values of civility in our engagement with one another.

Sincerely,

John J. DeGioia
President
Georgetown University

15 Things You Should Never Say To An Autistic

2012-02-24T18:32:00.006-05:00

Trigger warning: Quotes of things that shouldn't be said. They can be ableist and triggering.

15 Things You Should Never Say To An Autistic

There could really be a hundred or a thousand of these, but I've decided to choose just fifteen for the sake of brevity and not imploding anyone's browser. All of these things have actually been said to Autistics, children and adults, and some of them are unfortunately very common. Some happen more often over the internet, and some happen more often in person, but they're all phrases or questions that can be incredibly hurtful. Sometimes people who say these things are well-meaning, which can make the impact even worse. Especially in those cases, people might not understand why these can be so offensive and hurtful, and occasionally insist that what they're saying is a compliment, even when it's not.

1. "So is that like being retarded?"

Factually speaking, Autistic people in many cases do not have an intellectual or cognitive disability, and many people with intellectual or cognitive disabilities are not also Autistic. There are some Autistic people who also have an intellectual or cognitive disability. Nevertheless, the word "retarded" is often very hurtful for Autistic people, as it is frequently used as an insult to dehumanize people with developmental and intellectual disabilities. The r-word is often used to express hatred for people with disabilities. Please don't use it.

2. "You should be very proud of yourself. You seem so normal. I couldn't tell that you're Autistic."

While this is rarely said to Autistic people whose disability is very visible, it is very frequently said to Autistic people with much more invisible disability. It's insulting because it suggests that because the person doesn't appear to be disabled or doesn't fit preconceptions of what Autistic people are supposed to sound or act like, that person must therefore not have a disability or be Autistic. It also suggests that "normal" is the standard to which anyone should aspire to appear or act (and that "normalization" should be the ultimate goal of therapies or treatments for autism rather than pragmatic coping skills to navigate a world where Autistics are a minority), and therefore that it's not good to act or speak in ways commonly associated with being Autistic, even if those behaviors don't actually hurt anyone. This is very dismissive of a person's disability and experiences.

3. "You must be very high-functioning."

Many Autistic adults take issue with the "high-functioning" and "low-functioning" labels for a variety of reasons. Some people have received both labels but at different times in their lives, and many Autistics have very uneven skill levels -- some people who might be able to articulate their ideas very well at a conference may be unable to travel alone or cook for themselves, while some people who are unable to communicate with oral speech might be able to live independently. That debate aside, this is also very dismissive of a person's individual experiences with disability. Unless you know someone very, very well, you have no way of knowing what specific adaptive functioning skills or life skills a person has or what his or her needs and challenges might be, and it's not possible to acquire that information simply by looking at a person.

4. "You're not like my child; you can write a blog post. My child will never be able to write a blog post."

Not everyone who can write a blog post can live independently, tend to their own activities of daily life, get and keep a job, complete higher education, travel alone, communicate with oral speech, or manage their own finances. The ability to write a blog post says absolutely nothing about a person's needs and challenges, and how disability might affect an individual person. There are people like Amy Sequenzia, Larry Bissonnette, Amanda Baggs, Tracy Thresher, Hope Block, Sue Rubin, and Carly Fleischmann, all of whom are non-speaking Autistics or people with autism who have given presentations at conferences, written blog posts, written letters to the editor, published articles in newsletters or journals, and visited legislators. Other people, like Kassiane Sibley and Kathryn Bjørnstad, who are frequently touted as "high-functioning" because of their blogs, do not have consistent adaptive functioning abilities.

5. "I know a kid whose autism is really severe. You don't seem like him."

Every Autistic person is different from every other Autistic person. Among Autistics, there is a huge range in individual abilities, skills, needs, and challenges. It is impossible to know what an Autistic's abilities and skills versus needs and challenges after a brief conversation either in person or in the comments thread of an internet post. What makes Autistic people a group united by a shared diagnosis are the commonalities of all Autistic people. All Autistic people share some of the same core characteristics that define autism -- key differences in neurological functioning, sensory and cognitive processing, and communication abilities that often manifest as disability. If an Autistic person was diagnosed by a qualified clinician familiar with autism, that person is Autistic, regardless of whether they look, speak, or act like another Autistic person.

6. "Can you have sex?"

Yes, Autistic people can have sex. Some get married and have children. Some have Autistic children. Other Autistic people are never taught about sex, for a variety of reasons. Autistic people, like all people with developmental disabilities, are at much higher risk for abuse or victimization -- sexual or otherwise -- than the general population, but that doesn't mean that Autistic people don't know about or can't have sex.

7. "Does that mean you're really good at math/computers/numbers?"

If there's one thing that's sure to offend an Autistic, it's seeing him or her in terms of common stereotypes about autism. A very small minority of Autistics are also savants. Many Autistics have higher than average measured IQ, and many Autistics have measured IQ that falls right into the median, while still others have an intellectual or cognitive disability. Some Autistics have dyscalculia or similar learning disabilities, and actually find math to be extremely difficult. Other Autistics, including those who might be good at math, simply don't like it. And yes, some Autistics happen to be excellent with math and enjoy working or studying in related fields. There are Autistics who are relatively computer illiterate as well as Autistics who thrive in the IT world and community. Asking if we like math, computers, or numbers because we're Autistic is like asking a Black or African American if he or she likes watermelons or rap music because he or she is Black or African American.

8. "But you're married/have a job/go to college. You couldn't do that if you were really Autistic."

Yes, it's true that every Autistic isn't going to get married, have a job, or go to college. But plenty of Autistics do get married, have jobs, or go to college. This statement is insulting because it's ableist. (For those who may not regularly read my blog, ableism is like racism, ageism, or sexism, but directed toward people with disabilities.) While not every Autistic person may be able to do all or some of these things, it's very ableist to assume that no Autistic person can or that anyone who can must not be Autistic.

9. "Do you take any medications for that?"

This is a very personal decision. Some Autistic people take medications for various reasons, and some do not take any medications. You wouldn't ask a stranger if he or she was on medication for anything, so you shouldn't ask an Autistic person whom you don't know very well if he or she takes medications either. This is very rude to ask someone, especially someone whom you do not know well. The only context in which such personal questions are appropriate with strangers or acquaintances might be during a conference or panel presentation where the Autistic speaker is specifically speaking about his or her experiences.

10. "You have no right to claim to speak for severely Autistic people who can't speak for themselves."

Firstly, any non-speaking Autistics can speak for themselves. People like Amy Sequenzia, Larry Bissonnette, Amanda Baggs, Tracy Thresher, Hope Block, Sue Rubin, and Carly Fleischmann are all non-speaking and they can speak quite capably for themselves. Secondly, while every Autistic person has different abilities and needs, that does not mean that Autistic people who may present as highly verbal or invisibly disabled cannot speak to the commonalities that they have with Autistic people who do not present the same way as themselves. Furthermore, any Autistic person will understand another Autistic person's experiences far better than any non-Autistic person by nature of also being Autistic. That doesn't mean that I should be advocating for your child in his or her school (unless you ask me to do that, it's not my place), or that I know your child's particular quirks or personality, because unless I actually spend time with your child, I don't and won't. It does mean that I share the way your child experiences the world, and can speak to that.

11. "Can you please not flap/rock/spin/jump in public? It's embarrassing."

Flapping, rocking, spinning, jumping, or other stimming (calming behaviors), in the vast majority of cases, hurts neither the person doing it nor anyone else nearby. There's nothing wrong with stimming, and this statement communicates that the Autistic person should stop acting like him or herself or stop moving in ways that come naturally and instinctively. This is like asking a Christian who likes to wear cross jewelry to please not wear a cross necklace in public, or asking a Latino or Hispanic from an hispanohablante country to please not speak Spanish while in public. It's very offensive, and for some people, could be very triggering (psychologically and emotionally traumatic).

12. "You mean you are a person with autism. You are a person first, not a disability or a disorder label."

Some people on the autism spectrum do prefer to be called people with autism, and if talking to someone who does, you should call him or her a person with autism. Many of us, however, prefer to be called Autistic or Autistic people, and if you are talking to someone who prefers to be called Autistic, you should also respect his or her preferences in referring to him or herself, and call that person Autistic. Everyone has the right to decide how they would like to be described, and you should respect that right.

13. "What's it like to be Autistic?"

You wouldn't ask someone what it's like to be Black or African American, or Jewish, or Muslim, or Transgendered, or elderly... You shouldn't ask someone whom you don't know well what it's like to be Autistic outside the context of a conference or panel presentation about that person's experiences -- in which case, more specific questions might actually be better and more effective. Besides, every Autistic person's experiences vary so much that it'd be an injustice to all of us for you to ask a question that implies that there's one way to experience being Autistic. While we share certain characteristics and experiences of the world, our life stories and our experiences with people and ableism are vastly different.

14. "Have you ever heard of Temple Grandin? Her books are really amazing!"

The answer is almost always yes. But it gets very tiresome for Autistic people to constantly hear about Temple Grandin day in and day out. There are many prominent Autistic people in diverse fields and known for a variety of accomplishments, and it's very annoying to be constantly compared to the one same person all the time.

15. (Asking a question about the Autistic person to a parent, support person, aide, sibling, or friend who is standing or sitting beside the Autistic person )

Please don't talk about us as if we're not in the room when we're sitting or standing right here. Just don't. The message that that communicates to us is that we don't matter and can't possibly have anything meaningful to communicate.

Six Years

2012-02-23T17:17:00.004-05:00

As some of you might know, I have been working on legislation to mandate training about autism for law enforcement and corrections officers in Massachusetts since 2009. It started as an overly idealistic, rather optimistic idea for how to complete my school's requirement that all eleventh grade students merge their interests and abilities with a need in the community in a year-long community service project. This is when I first decided to become involved with the larger autism and Autistic community.

For a very long time, I had wanted a career in law enforcement (in addition to writing crime novels, which I do now), and I decided to explore the overlap of my potential career interest with a part of my identity -- being Autistic. I quickly realized that the vast majority of states do not offer or require training about autism for law enforcement, which has repeatedly led to unfortunate situations, including wrongful deaths, wrongful arrest, exacerbation of sensory problems, and even altercations, all of which could have been avoided had officers been taught to recognize common behavioral and verbal characteristics of Autistic people and to respond with appropriate de-escalation techniques.

In fall 2009, I approached my then State Representative, Katherine Clark, about the possibility of creating legislation to require an autism training program for law enforcement in Massachusetts. By the Spring, I had drafted legislative language, and the bill was filed for the first time as House Bill 4811 in May 2010. Unfortunately, it was a late file (as the session had started in January 2009 and was to conclude at the end of July 2010), and never made it out of committee, which would have been the first step to moving forward in the legislative process. I later learned that that was the first year that a new bill filing system had been introduced, and that many committees were inadvertently uninformed of bills assigned to their committee.

Unfazed by the first fledgling attempt at filing legislation, the bill was refiled in the 2011-2012 legislative session in January, ahead of the filing deadline, in both the House and the Senate. By this time, I had received a few suggestions about the bill's language, and had incorporated them into minor revisions in the text of the bill, now filed as Senate Bill 1197 and House Bill 2909. Katherine Clark was now my State Senator, and the newly elected State Representative for my district, Paul Brodeur, also agreed to sponsor the bill. Very quickly, another Senator, Jim Timilty, and two other Representatives, Denise Provost and Kay Khan, signed their names as co-sponsors. All of this was very exciting.

I anxiously waited for the committee to schedule a date for a hearing -- committees must hold public hearings before a bill can progress in the legislative process. My bill had been assigned to the Joint Committee on Public Safety and Homeland Security, where Senator Clark sits and which Senator Timilty co-chairs. More optimism came my way as the chairs of a legislative committee can often exercise a good amount of influence on the committee's activities and decisions. The hearing was held on 19 May 2011, and several people submitted written or oral testimony in favor of the bill along with my own testimony -- cobbled together at one in the morning the day of the hearing in true student fashion.

After that, progress came to a standstill. I've spent the last nine months waiting to hear word -- any word -- from Senator Clark's office, from Senator Timilty's office, from anyone associated with the committee -- about when the committee could be expected to favorably report the bill from committee and move it forward in the legislative process. At the beginning of the summer, I was told that my bill was one of ten priority bills that the committee intended to report favorably by the end of summer. At the end of August, nine other bills had been reported favorably from committee. Mine had not.

Months passed with other pieces of information -- that the casino debate had taken the bulk of everyone's attention and it would not be addressed until late October; that the House co-chair of the committee, Rep. Harold Naughton, was deployed on active duty, and they wanted to wait for him to return before taking action; that at the beginning of the year (January), they needed to act without Rep. Naughton...

After continual frustration and anxiety, Senator Clark's legislative staffer called me today. My bill was to be included in an omnibus type bill with more general language. I called Senator Timilty's office and spoke to his Chief of Staff less than two hours before writing this. Instead of an omnibus bill, only one piece of legislation (Senate Bill 1258), which was intentionally written with very vague wording, will be released from committee next week. My legislation and some related initiatives around police training programs were to be rolled into S-1258 -- the bill language would not be included, but the bill's history would be amended into S-1258's bill history. My bill is not leaving the Joint Committee on Public Safety and Homeland Security. It is dead, effective today.

Senator Timilty's Chief of Staff told me that I should re-file in the next legislative session, 2013-2014. He said that it's a good idea that will continue to have support. It can't go through, however, because of financial reasons. Massachusetts's police are operating on a deficit, in particular regard with training officers. Such a mandate cannot be funded were it to pass. Even if the autism training program would save money in the long run, there's no money for it now, and thus the bill has been killed.

S-1258 creates a funding mechanism for police training, which Senator Timilty's Chief of Staff told me would hopefully be able to be expanded in the future to allow for additional programs and initiatives, such as a program on autism. The bill's language specifies only that the Municipal Training Committee update its programs. That was, he said, the key phrasing. That's all. No mention of autism, nor of disability in general. They were reassured by the MTC that training programs will be updated to include training on appropriate and respectful interactions with a variety of marginalized groups -- people who don't speak English, people with physical disabilities, people with developmental or intellectual disabilities. But reassurances without the backing of regulations or legislation don't carry much weight with me.

I've heard that it takes an average of six years to pass a bill in Massachusetts. I started this process in 2009, and first filed in 2010. It's 2012. Two-ish years down. Four to go? Maybe more?

I'm a writer, and I can't seem to find the best adjectives to describe my feelings right now. Disappointed is a good one. Frustrated seems too mild. On the verge of crying is on the cliché side. But I'm unable to produce more precise verbiage at the moment, so those will have to do.

Three years, and I'm right back to where I started. Well, this is depressing.

Autistic (Self) Advocates: What People Think We Do

2012-02-19T03:40:00.004-05:00

For those who are wondering, yes, I am in the last picture (bottom right.) This came about after an explosion of this meme all over my Facebook wall, and I decided why not share a public copy.

The De-legitimization of Autistic Voices

2012-02-15T16:46:00.009-05:00

De-legitimization is the process by which voices are silenced through removing their legitimacy. This can be a good thing, for example, when one understands that a Senator who was raised in a wealthy family and is still wealthy today has no legitimacy to express the concerns of the poor, or when one understands that a totalitarian government that represses all opposition and dissidence has no legitimacy for its people, who did not choose and do not want it. Those might be considered positive or constructive examples of de-legitimization.

But for any marginalized community, and for me in particular as an Autistic, de-legitimization can become a frightening and threatening process that occurs nearly constantly. For Autistics, de-legitimization is the name for what happens when people, usually but not always non-Autistics, attempt to remove any legitimacy from the words or opinions of the Autistic person, so that that voice is rendered silent and unheard, so that that voice is not lent credence or granted validity.

There are two major ways that this happens.

The first fallacy is the "not Autistic enough" or "not really Autistic" fallacy. This is the fallacy that assumes that because a person appears to be "high-functioning," has a relatively invisible level of disability, or is assumed to be less disabled that that person is not Autistic or disabled enough to understand more severe disability in Autistic people. Sometimes the ability to write a blog post is conflated with having adaptive functioning skills and life skills such as taking care of one's own hygiene, cooking meals for oneself, transporting oneself, and determining one's own schedule, when in many cases, this is simply not true. Sometimes the ability to write a blog post is even equated with the regular and consistent ability to use oral speech as a means of communication, when this is not always the case.

It is not possible to be more or less Autistic than someone else, but it is possible to be more or less disabled than another Autistic person. And it is true that every Autistic person has a different set of strengths, abilities, challenges, and needs, and that in the context of the society in which we live, some Autistic people are more disabled than other Autistic people. But part of what defines being Autistic is being disabled, and thus it is not possible to be Autistic and to not be disabled. It is impossible to be Autistic and not share in the experiences of the world that bind together those of us who are Autistic. At its core, autism is characterized by key differences in information and sensory processing that typically manifest as communication challenges, social atypicalities, and disability.

Autistic adults, regardless of specific abilities and needs, can relate to other Autistic adults and children on a level that is not quite possible for non-Autistics. That is not to say that an Autistic stranger will understand an Autistic child better than the child's non-Autistic parent -- and certainly not that any random Autistic stranger will love that child in any way that can mirror the parent's love -- but it is to say that because all Autistics share certain common characteristics on the neurological level, it is tragic and unfortunate when anyone dismisses the voice of an Autistic adult on the basis of not being Autistic enough to relate to or understand another Autistic's challenges or needs.

Sometimes the argument is made that if an individual can communicate or express ideas at all, he or she cannot possibly actually be Autistic because of this expressing of ideas, but this is not at all true. Behavior is communication, as Julia Bascom observes so powerfully, and advocacy begins with "no," as Kassiane Sibley knows from personal experience. Extreme challenges with expressive communication do not always mean significant challenges with receptive communication. Inability to speak does not mean inability to sign or point or type -- a few words at a time or entire blog posts. And the use of oral speech does not necessarily mean the effective or pragmatic use of oral speech either.

But this idea of some Autistics as not really Autistic enough or not Autistic at all is not the only fallacy repeatedly used to de-legitimize the voices of Autistic advocates. The other fallacy, in comparison, is almost worse, and possibly even more damaging. This second mistake is the fallacy of dismissing an Autistic's thoughts or ideas because the person is Autistic -- it is the fallacy of "too Autistic to understand." The argument is that an Autistic person is incapable of perspective-taking, understanding circumstances different from his or her own, or empathizing, and that therefore the Autistic person cannot truly appreciate or understand the complexities of a situation, policy, issue, or life. Based on this argument, any Autistic person has no reason to speak, literally or metaphorically, at all -- whether about his or her own life and needs or about issues and ideas that affect all Autistic people and their families.

This argument reeks even more of ableism than the previous one. Most of its assumptions are patently untrue. While Autistics might have significant trouble reading facial expressions or body language, or interpreting tone of voice or other prosodic elements of oral speech, we by no means are incapable of perspective-taking. An inordinate number of Autistics, in fact, continue to play imaginary play games well into adulthood, such as various types of roleplaying games. Other Autistics are writers of novels and short stories and fanfiction. All of these activities require the ability to take different perspectives from one's own, and at a minimum, the roleplaying and fanfiction worlds are often very much niches for Autistics and Autistic Cousins (ACs).

And the myth of lacking empathy is one of the most tragic and ableist myths still rampant in our time. There have been a few studies dissecting this myth that demonstrate that not only do Autistics experience empathy as much as their non-Autistic peers, but in certain circumstances, Autistics on average experience higher levels of empathy.(1) It is well known that Autistics have difficulty interpreting nonverbal communication standard to the subtext of social interactions between non-Autistics; thus, it ought to be no surprise that Autistics may not interpret nonverbal cues that someone is upset or afraid or frustrated or sad or anxious, and then respond in a way that suggests the Autistic is oblivious to the other person's feelings. It's not that the Autistic is oblivious to other people's feelings so much as the Autistic is unable to interpret or analyze the body language or implicit hints to those feelings.(2) Autistic people can make very loyal friends.

The argument that Autistic people are incapable of truly understanding a situation or an issue lacks merit. Of course, it may be that there are individual Autistics who may not understand a particular situation or issue or its complexities, just as there may be individual non-Autistics who may also not understand that same situation or issue or its complexities, but that lack of understanding likely has very little to do with the fact that the individual is Autistic. The idea of self-advocacy, in fact, originated with the intellectual and cognitive disability community rather than with the Autistic community -- these people might represent, to some, the epitome of a person incapable of higher-order thinking and reasoning on the basis of having an intellectual or cognitive disability. But self-advocates with intellectual and cognitive disabilities have repeatedly challenged these assumptions and stereotypes about their capacity to participate in determining not only their own lives but also public policy.

The de-legitimization of Autistic voices only serves to confirm that we still have a long journey to take. Until Autistics can be given equal footing at the table, in the conversations about autism and about us, without repeated inquiries into our fitness to be speaking or to be representing other Autistics, we will not be equal members of society.

If a young Black or African American woman were told she wasn't "black enough" to represent other young Blacks or African Americans, there would be national uproar. If she happened to be so light-skinned she could almost pass for white, and was told that therefore she had no right to call herself Black or African American, much less speak for other Blacks or African Americans, there would be considerable upset. Or if she happened to have lived in the poorest part of St. Louis all her life, dropped out of high school to work to support her family, and never finished her diploma, only to be told that because of her socio-economic and educational status, she wouldn't be able to understand the issues facing and directly affecting her as a young Black or African American woman from a poor part of the country, there would be outrage. Of course she has not personally experienced every possible life experience of every Black or African American in America. Of course her personal triumphs and struggles are individualized and specific to her life. But she has every right to speak as a representative of other people like her.

While those arguments against such a young woman would undoubtedly be the target of much criticism in the public sphere, they exemplify precisely the type of de-legitimization that the ever common fallacies of "not Autistic enough" and "too Autistic to understand" seek to emulate and apply to Autistics with devastating consequences. And it needs to end.

________________________________________

(1) Kimberley Rogers, Isabel Dziobek, Jason Hassenstab, Oliver T. Wolf and Antonio Convit. "Who Cares? Revisiting Empathy in Asperger Syndrome." Journal of Autism and Developmental Disorders. 37(4): 709-715. DOI: 10.1007/s10803-006-0197-8

(2) "Autistic people may, therefore, neither at all be mind-blind nor lack empathy for others, but be hyper-aware of selected fragments of the mind, which may be so intense that they avoid eye contact, withdraw from social interactions and stop communicating. In such a scenario, the world may become painfully intense for autistics and we, therefore, propose autism as an Intense World Syndrome."

Henry Markram, Tania Rinaldi, and Kamila Markram. "The Intense World Syndrome – an Alternative Hypothesis for Autism." Front Neurosci. 2007 November; 1(1): 77–96. Published online 2007 October 15. Prepublished online 2007 September 1. doi: 10.3389/neuro.01.1.1.006.2007

Self-Advocacy Isn't All About Legislation

2012-01-31T13:23:00.003-05:00

Trigger warning: Brief mention of the r-word.

"You're not like my child; my child cannot understand legislation and policy and will never self-advocate like that."

So many times I've heard this kind of remark. Sometimes it's said with disappointment, and at other times with indignation, and at other times with raw anger and hurt. At still other times, it's said with frustration.

But beneath that statement lies one major fallacy -- the conflation of self-advocacy with advocating for policy or systems change. But self-advocacy isn't exclusive to the realm of legislative and policy advocacy. Self-advocacy simply means the ability to express one's needs or desires. It can be very individual and specific to one's immediate situation (i.e. indicating hunger or a need to walk outside) or it can be broader (i.e. expressing the need for different accommodations in a school or workplace setting) or it can be systemic (i.e. policy or legislative advocacy.) As Kassiane Sibley puts it, "advocacy begins with 'no.'" Absolutely anyone can self-advocate or can learn to self-advocate.

That includes all Autistic people, all people with intellectual or cognitive disabilities, and all people who are presumed to be incompetent or incapable of comprehending their surroundings or conversations around them. The term "self-advocacy" originally comes from the intellectual disability community rather than the Autistic community, and refers to a person with an intellectual disability expressing his or her own needs or desires -- becoming an advocate for him or herself.

In some cases, such people also become advocates for other people like them. The term self-advocate then is expanded in its definition to mean "an advocate belonging to the group for whom the advocacy is being done." This means that young people who would be affected by passage of the DREAM Act lobbying for its passage are self-advocates. This means that teachers who would be affected by changes in regulations on education and professional development involved with advocacy around those proposed changes are self-advocates. For us, it means that people with disabilities advocating around issues related to disability are self-advocates.

But not all people can comprehend legislative or policy advocacy. That's not true only of Autistic people, but it's also true of non-Autistic people and people without any disabilities at all. It may be fairer and more accurate to say of a particular child that that child may not understand talk of policy and legislation, or that that child may not understand talk of policy and legislation now. And it may be that that particular person may never grasp the complexities of policy and legislative advocacy. That does not mean that that person cannot self-advocate.

Anyone can learn to express him or herself. Communication and the supports to access alternative forms of communication are key to providing all Autistic people, especially non-speaking Autistic people, the opportunity to self-advocate -- whether that self-advocacy will remain solely within the realm of that person's own personal life or whether it will later broaden and that person will advocate on a much larger scale.

But before I conclude, let me discuss the case of Amy Sequenzia, a friend of mine. For those of you who are parents out there right now, who may have at one time said something about your child never being able to self-advocate or who may have thought it secretly, let me offer a different perspective.

Amy Sequenzia is a non-speaking Autistic woman who usually travels with a support person. Some people have presumed her to be "mentally retarded" or incompetent. Many people might look at her in person for a few seconds and assume that she is "out of touch" with the world around her, "trapped" inside her mind and unable to communicate, or tragically mentally disabled. But Amy is also a self-advocate, not merely for herself, but for other Autistic people. She writes poetry about being Autistic, visits her legislators to discuss policy (communicating by typing), publishes letters to the editor in her local papers, and semi-regularly writes about autism related issues online. Amy is a living testament to the truth that absolutely anyone can learn to self-advocate.

Besides, self-advocacy isn't all about legislation anyway.

Being Out

2012-01-27T01:57:00.005-05:00

I've been wondering for a while now whether being out about being Autistic would hurt or help me more in the long run, particularly in terms of finding and keeping a job after graduation. It's no secret to the disappointingly huge number of Autistic adults who have lost jobs or been unable to get jobs because they were out or visibly disabled that Autistic people routinely face discrimination in employment.

It's also impossible for me now to go "in the closet" as a rather invisibly disabled Autistic. I can avoid mentioning being Autistic in an interview, but any cursory search of my name will now yield a very large number of search results that reveal that I'm Autistic. Most of those articles or blog posts are part of what some sociologists call "public discourse." There is no practical way I could hide or remove that information from the public.

I've been wondering lately whether this might hurt my prospects for future employment, particularly given the potential career paths that I've been considering for a very long time, which may or may not be conducive to Autistic and Autistic-like people (cousins), and which may tend toward more conservative attitudes concerning divergence from norms.

But I came to two important realizations.

1.) Being out means that I have more opportunities to effect positive systems change and to advocate for people like me. I'm not willing to sacrifice those opportunities for the sake of self-advancement. If I can do something to benefit another person, I feel morally obligated to do so. Since I've been public about being Autistic beyond my small circle of friends, I've had innumerable opportunities to network and add my voice to a growing number of causes and campaigns, both for individual people and in broad policy change -- and none of this would have happened or can continue to happen if I were not out.

2.) It really doesn't matter. If someone does not want to hire me because I'm not so great at small talk during the job interview, need to be in an office without harsh fluorescent lights, can't be around people wearing scented products, need explicit and detailed and written instructions to do quality work, and require additional time to recover from sensory overload throughout the workday, then I don't want to be working for that person. If someone is unwilling to make minor, cost-effective accommodations so that I can be a better employee, it's not worth my time to pursue employment with that person.

I am Autistic, and I am not ashamed of that nor am I afraid to say it.

Having Loud Hands

2012-01-21T03:21:00.004-05:00

Unlike a good, large number of people in the autism community, I had never heard the phrase "quiet hands" until fairly recently, when I read this article by Julia Bascom, which so eloquently describes the abusive side of Applied Behavioral Analysis—commonly touted as the most common "evidence-based" intervention or therapy for autism. I almost cried.

"When I was six years old, people who were much bigger than me with loud echoing voices held my hands down in textures that hurt worse than my broken wrist while I cried and begged and pleaded and screamed."
— Julia Bascom

Quiet hands. It means to be still and proper. It means to stop flapping or squeezing or flicking or rubbing. It means, in translation, "Stop looking so damn Autistic already!"

It is a quick, easy way to silence Autistic people. Especially Autistic people who don't talk, for whom behavior is unquestionably communication.

Having quiet hands means giving in to systemic ableism and letting external standards of "normality" and "acceptability" dictate one's behavior at all times. Having quiet hands means hiding being Autistic and suppressing natural ways of speaking and moving. Having quiet hands means shutting up and putting up and giving up.

I don't want to have quiet hands. Ever.

And that's why I'm writing about the Loud Hands Project. Loud Hands are the opposite of quiet hands. Loud hands means to be Autistic and proud. Loud hands means to move and speak and act as comes naturally. Loud hands means to eschew externally defined ideas of "normality" and "acceptability." Loud hands means to be comfortable in being Autistic.

It means moving beyond "There's something wrong with you."

The Loud Hands project, spearheaded by Julia Bascom of the "Quiet Hands" piece and sponsored by the Autistic Self Advocacy Network, is a transmedia project that seeks to give a broader platform to the diversity of voices, both literal and metaphorical, of Autistic people throughout the community. The initial $10,000 necessary to fund the publication of an anthology of essays by Autistic people was reached in an amazing nineteen days (just under three weeks), but there's plenty more to come.

Julia has described the next three benchmarks for future funds:

Benchmark 1: $15,000 “About us, without us”
“About us, without us” is a video about the Autistic community and our place in the conversation around eugenics and the prevention of autism. If we make the $15,000 benchmark, we’ll be able to pay for Julia to go on the road and collect interviews and footage, and cover production, editing, and initial distribution costs.

Benchmark 2: $20,000 “Welcome to the Autistic community”
- With these funds, we can rush website development and have the Loud Hands project website complete, fully accessible, and ready to launch on April 2, 2012—Autism Acceptance Day.
- Use the website to commence the development of materials tailored to all ages and abilities explaining autism and welcoming the autistic person to the community.
- Initially, this will take the form of a letter drive, blog carnival, and pamphlet-design competition, with ongoing further refinement and eventual publication of materials.

Benchmark 3: $25,000: Connecting to Community Together
To begin, we will produce a DVD incorporating video and written content from across the history of the Autistic community, establishing our historical context. Then, to explore the state of the movement today, we will use the funds raised to establish a Conference Scholarship fund for Autistic self-advocates to use to attend Autistic and disability rights related conferences and events connecting to the larger theme of disability culture. Scholarship recipients will participate in a second video documenting Autistic community and culture.

This is why the Loud Hands Project is important. So that the next generation of Autistic people will have a precedent for having loud hands and embracing themselves as complete human beings with value and dignity as Autistic people. So that there will be no more "There's something wrong with you." So that little by little, we can strike down the bricks that have institutionalized ableism across our society, in our schools, in our policies, in our everyday interactions.

Coming only days in the wake of Martin Luther King, Jr. Day, it is imperative to remember that the fight for civil rights is not over. Autistic people are routinely disenfranchised, discriminated against, and subjected to "quiet hands." Our voices are constantly de-legitimized with all manner of straw-man and no-true-Scotsman fallacies not merely online but at conferences and in IEP meetings and in policymaking. Our rights are routinely ignored.

Loud hands are necessary. In the wake of enormous volumes of disinformation and misinformation about autism and who we are as Autistic people, in the deluge of vitriol and cacophony displacing any notions of community, we need to have loud hands to assert both the discrete individuality of Autistic people and the group cohesiveness that comes with Autistic culture.

And this is why I am supporting the Loud Hands project -- to empower Autistic people to be leaders now and to provide a role model for the next generation of Autistic people. They could be your children. Let's work toward a world in which your children will face less discrimination and stigma. Let's work toward a world in which your children can have pride in being who they are, and can find stellar examples of activism, advocacy, philanthropy, and self-fulfillment in today's generation of Autistic adults and youth.

That's what money to the Loud Hands project will do. It will make these projects possible, and expand the platforms that currently exist for Autistic people to express themselves and seize the mantle in our own advocacy. The Loud Hands project will be accepting donations for the next two months -- through 15 March 2012, and can be made here, which is also where you can watch the project's introductory video! (And yes, I made a donation -- better to put that money toward this phenomenal project than toward food not from the campus dining hall.)

Another way you can contribute? The upcoming anthology is looking for Autistic people to contribute essays. (Guidelines here.) And yes, I will be earnestly writing a submission. (It might even be good.)

Stop Censorship

2012-01-18T00:26:00.009-05:00

Did you visit Autistic Hoya earlier today? If so, you were redirected to a black page with information about the Stop Online Piracy Act (SOPA) and the Protect IP Act (PIPA), both of which are currently in consideration before the United States Congress. I ~~rarely~~ pretty much never write about something not directly related to autism or disability on this blog, but today, I participated in the internet strike in protest of SOPA and PIPA along with internet giants like Wikipedia, Wordpress, and Reddit.

These bills are intended to protect copyrighted intellectual property from infringement -- which is a good thing -- but are so badly written that they remove two important existing protections:

1.) Websites that immediately remove infringing content upon notification are no longer protected from civil liability for having had infringing content. They can be targeted and taken down by the government.

2.) Websites that unknowingly have infringing content uploaded by users, or that have a small minority of infringing content along with mostly legitimate content, are also subject to removal and censorship if the copyright holder files a complaint with the Attorney General.

In order to protect themselves from civil liability or government censorship (blocked access to their domain names), websites like Facebook, Twitter, and Youtube would need to censor every user uploaded post, link, or video, in order to avoid infringing on copyright or linking to another website that infringes on copyright. That flies directly in the face of the First Amendment, and the principles behind it -- freedom of belief, freedom of speech, freedom of expression, and freedom of the press.

These bills also ignore the fact that people with enough skill could easily find ways to go around government censorship of websites or domain names, and still illegally download movies or music or other torrented files. Furthermore, tools like Tor, which allow users to browse the internet anonymously and securely by proxy, would be rendered unlawful. Tor is regularly used by dissident activists and journalists across the globe, including under totalitarian regimes, to circumvent government monitoring and censorship.

Not only will the bills create a multiplicity of ethical and legal problems both here and abroad, they will also be ineffective in actually stopping copyright infringement and pirating of copyrighted materials. If you are a U.S. citizen, please call, email, or write your Representative and Senators, and urge them to oppose SOPA and PIPA. If you are outside the United States, please contact your American embassy or consulate. PIPA will go for a vote before the Senate on 24 January 2012 -- that's this coming Tuesday. SOPA, contrary to some rumors earlier this week, is not dead or shelved, and will be considered for final markup again before the end of February.

SOPA and PIPA could cripple the internet. In November, nine technology companies, including Facebook, Google, and Twitter, signed a joint letter to the Joint Committee on the Judiciary in opposition to both bills. Under these bills, not only could websites like Wikipedia and Google be shut down forever, but even the websites of nonprofit organizations could have access to advertisers, payments, and donations permanently removed by the government and media corporations without any due process or court hearing whatsoever.

Watch the brief video below, and visit any of the links in this post to learn more about these bills and how you can take action against them.

PROTECT IP / SOPA Breaks The Internet from Fight for the Future on Vimeo.

What We Can Learn From Chris Baker

2012-01-16T19:03:00.006-05:00

Trigger warning: Descriptions of abuse of students with disabilities by teachers.

You know there are problems with our educational system when a teacher can claim that putting an Autistic child inside a bag and pulling the drawstring shut is a form of therapy. When this happened to Chris Baker, a fourth grader in Kentucky, last month, I decided to take action.

Within days, more than 120,000 people signed my petition at Change.org demanding that the Mercer County Board of Education stop similar incidents from occurring in the future. (There are currently over 165,000 signatures, and Chris's mother will be presenting a print copy at this Thursday's school board meeting.)

Our future must be different from our troubled past. In the last several months alone, multiple cases of bullying or abuse by teachers have come to light, most of them involving Autistic students or students with other disabilities. There was Autistic student Emily Holcomb in Alabama, who was charged with assault after being held down by her teacher for almost an hour and trying to slap and push herself away. Then there was Julio Artuz in New Jersey, who videotaped his special education teacher verbally abusing him after everyone, including his parents, repeatedly disbelieved his reports of the bullying. And these are only the cases that have made it to the news.

In Chris's case, the school superintendent has issued an ambiguous statement essentially claiming the district is taking appropriate action when, in fact, there are no regulations in Kentucky concerning restraint and seclusion. It’s possible that the teacher responsible for putting Chris in the bag might receive a mere slap on the wrist – a slap in the face to the Bakers, and especially to Chris.

I believe the vast majority of teachers are well-meaning people who genuinely want to support and serve all of their students. But when it comes to Autistic children, who represent an estimated 1% of the population, most teachers aren’t adequately educated.

There is a nationwide lack of accurate information for teachers about how to interact respectfully, meaningfully, and appropriately with Autistic students. When teachers don’t know how to treat Autistic students with the same respect and dignity afforded to our non-disabled peers, children like Chris suffer.

Chris’s experience is also a reflection of deeply institutionalized attitudes toward people with disabilities. As long as non-disabled people see us as somehow broken, diseased, defective, or dysfunctional, they implicitly condone practices that thinly disguise torture and abuse as therapy. It is illegal to treat a prisoner or an animal the way the Mercer County Intermediate School teacher treated Chris – but because he is Autistic, the teacher responsible could claim that confining Chris in a bag was "therapy."

What happened to Chris was wrong. But there is something to be gained from this horrific incident – the publicity from his case has given advocates the opportunity to increase broader awareness of the systemic problems facing students with disabilities and to lobby for systemic policy changes to prevent future abuse. I hope it will lead Congress to act on Senator Tom Harkin's Keep All Students Safe in Schools Act, the latest attempt at federal restrictions on the use of restraint, seclusion, and aversive interventions.

Until all Autistic people are afforded the same rights as our non-disabled peers, this type of abuse will continue to occur with few repercussions for those responsible. By taking action to support Chris and his family, we can work to build a future where all people, including Autistic people, are treated with the dignity and respect they deserve as human beings.

Life Not Worth Living

2012-01-14T00:38:00.007-05:00

Trigger warning: Extensive discussion of ableism and eugenics, mention of forced sexual assault, repeated quotes of the r-word, and extended direct quote of narrative of an extremely triggering situation. Also some nasty comments.

An accessible audio recording of this post:

Life Not Worth Living - Autistic Hoya by autistichoya

Update 15 Jan. 2012: You can sign both petitions here and here, thanks to Sunday Stilwell and Katy Ahern. I've provided email addresses of the transplant team and administration, so all signatures will send an email to all of the targets.

Life Not Worth Living

Shame on the Children's Hospital of Philadelphia. A crying shame.

Just four days ago, on 10 January 2012, a young girl with Wolf-Hirschhorn Syndrome, a rare genetic disorder, was taken to CHOP for a nephrology appointment.

I can't describe what happened. I can only give it to you straight from Amelia's parents.

I put my hand up. “Stop talking for a minute. Did you just say that Amelia shouldn’t have the transplant done because she is mentally retarded. I am confused. Did you really just say that?”

The tears. Oh, the damn tears. Where did they come from? Niagara Falls. All at once. There was no warning. I couldn’t stop them. There were no tissues in conference room so I use my sleeve and my hands and I keep wiping telling myself to stop it.

I point to the paper and he lets me rant a minute. I can’t stop pointing to the paper. “This phrase. This word. This is why she can’t have the transplant done.”

“Yes.”

I begin to shake. My whole body trembles and he begins to tell me how she will never be able to get on the waiting list because she is mentally retarded.

A bit of hope. I sit up and get excited.

“Oh, that’s ok! We plan on donating. If we aren’t a match, we come from a large family and someone will donate. We don’t want to be on the list. We will find our own donor.”

“Noooo. She—is—not—eligible –because—of—her—quality– of –life—Because—of—her—mental—delays” He says each word very slowly as if I am hard of hearing.

“STOP IT NOW!” The anger is taking over. Thank God. Why did it take so long to get here?

The social worker is writing some things down. Not sure what. She casually gets up to take a call. My eyes follow her to the phone and I see Joe’s face. His mouth is open, his face is pale and he is staring straight ahead of him at the white board.

Rage fills the room. I point in his little, brown pudgy face. “Do not talk about her quality of life. You have no idea what she is like. We have crossed many, many road blocks with Amelia and this is just one more. So, you don’t agree she should have it done? Fine. But tell me who I talk to next because SHE WILL HAVE IT DONE AND IT WILL BE AT CHOP.”

I see the social worker quickly writing down what I just said. Joe hasn’t moved. Amelia is still asleep.

The social worker decides to join the conversation. “Well, you know a transplant is not forever. She will need another one in twelve years. And then what? And do you have any idea of the medications she will need to take to keep her healthy?”

I speak through gritted together. “YES, I HAVE DONE ALL MY RESEARCH.”

She smirks a little. “Well, what happens when she is thirty and neither of you are around to take care of her. What happens to her then? Who will make sure she takes her medications then?”

In a voice that mimics hers, I snort, “Well, what happens if you die tomorrow? Who will take care of your children? Your responsibilities at work?” She breathes in and her eyes widens. “Right!” I throw at her. “Neither of us can predict the future and we shouldn’t try. But if Amelia does not have this transplant she has no future!”

The doctor interrupts. He puts his hands up and tries to take a stern voice with me. “These medications she has to take after the transplant, they are very dangerous. They can cause seizures. We have to get the dose exact. They may cause brain damage.”

“DO OTHER CHIILDREN WHO HAVE A TRANSPLANT TAKE THIS MEDICATION?”

“Yes, but it is different for her. She is already brain damaged and mentally retarded.”

He pauses as if he is choosing his words carefully. “I have been warned about you. About how involved you and your famliy are with Amelia.”

The devil himself could not have produced a more evil laugh. “Ha! Warned! That is funny! You have no idea…”

I am beginning to realize I want this over with so I can move onto the next person who will help me with the transplant. So I say the words and ask the questions I have been avoiding.

“So you mean to tell me that as a doctor, you are not recommending the transplant, and when her kidneys fail in six months to a year, you want me to let her die because she is mentally retarded? There is no other medical reason for her not to have this transplant other than she is MENTALLY RETARDED!”

“Yes. This is hard for me, you know.”

My eyes burn through his soul as if I could set him on fire right there. “Ok, so now what? This is not acceptable to me. Who do I talk to next?”

“I will take this back to the team. We meet once a month. I will tell them I do not recommend Amelia for a transplant because she is mentally retarded and we will vote.”

“And then who do I see?”

“Well, you can then take it the ethics committee but as a team we have the final say. Feel free to go somewhere else. But it won’t be done here.”

You can read the rest at "Brick Walls."

So this doctor thinks he can play God. Decide on a whim who will live and who will die, who deserves to live and who does not. Isn't that exactly what Adolf Hitler did? Following the widely successful idea of eugenics, Hitler adopted it to whole populations. People with disabilities? Little people? People with mental illnesses? People with intellectual disability? Gay, bisexual, or transgendered people? Jewish or Romani people? Serbs or Poles? Untermenschen. The best translation I can produce for that German word is "sub-humans." Not quite worthy to be called human.

It starts with this. The assertion that because Amelia has intellectual disability, hers is life not worth living. That statement cannot be isolated and confined to this one incident, this one doctor, this one point in time. It has tremendous ramifications for all of us, quite possibly for anyone who regularly reads this blog.

I once read speculation¹ that Hans Asperger's seminal paper had been couched in Nazi-style terminology in order to escape deep scrutiny, and that Asperger wanted desperately to save the children at his clinic from being subjected to the eugenic policies of the Nazi Party. Because people with developmental delays, people with developmental disabilities, people like me would have been among the first to go to the death camps.

Autistic people fall under the broad umbrella of people with developmental, intellectual, or cognitive disabilities. We are as diverse in our disabilities and differences as we are in our personalities, but this we share with Amelia. We share the stigma, prejudice, and bigotry to which people like us are routinely subjected. We are collectively victims of deeply institutionalized ableism -- the idea that certain groups of people are superior or inferior to other groups of people on the basis of ability or disability.

How can any doctor who has taken the Hippocratic oath not-to-harm insist that because Amelia has intellectual disability, hers is a life not worth living? Doctors are sworn to protect and preserve all life. It does not matter if the person rushed into the emergency room is a serial rapist and murderer of small girls and babies, or if the person in the intensive care unit was one of the murderers under the Khmer Rouge or in the Srebenica massacre, or if the person needing surgery were Ayman al-Zawahiri, Al Qaeda's new number one. Under the Hippocratic oath, there is no room for judgment or assessment.

No life is more valuable than another.

Doctors swear this.

I will respect the hard-won scientific gains of those physicians in whose steps I walk, and gladly share such knowledge as is mine with those who are to follow. I will apply, for the benefit of the sick, all measures [that] are required, avoiding those twin traps of overtreatment and therapeutic nihilism. I will remember that there is art to medicine as well as science, and that warmth, sympathy, and understanding may outweigh the surgeon's knife or the chemist's drug. I will not be ashamed to say "I know not", nor will I fail to call in my colleagues when the skills of another are needed for a patient's recovery. I will respect the privacy of my patients, for their problems are not disclosed to me that the world may know. Most especially must I tread with care in matters of life and death. If it is given to me to save a life, all thanks. But it may also be within my power to take a life; this awesome responsibility must be faced with great humbleness and awareness of my own frailty. Above all, I must not play at God. I will remember that I do not treat a fever chart, a cancerous growth, but a sick human being, whose illness may affect the person's family and economic stability. My responsibility includes these related problems, if I am to care adequately for the sick. I will prevent disease whenever I can, for prevention is preferable to cure. I will remember that I remain a member of society with special obligations to all my fellow human beings, those sound of mind and body as well as the infirm. If I do not violate this oath, may I enjoy life and art, respected while I live and remembered with affection thereafter. May I always act so as to preserve the finest traditions of my calling and may I long experience the joy of healing those who seek my help.

Their oath is to serve all human beings. Not some human beings. Not righteous or morally upright human beings. Not non-disabled human beings. Not typical human beings. All human beings.

What this doctor said can be translated thus -- Amelia is not a human being. She is sub-human. Untermensch.

But who is he to judge her quality of life? How can anyone look at any person with a developmental or intellectual disability and judge the quality of that person's life? Only that person can do that. We too have the capacity to live happy, meaningful, and fulfilling lives. We too have the right to determine our needs and desires as far as we possibly can. We too have the capacity to love and to be loved, to feel empathy and to receive empathy. We have loving families, like Amelia's loving parents. We have the capacity to form friendships. We have the capacity to make meaningful contributions to society, even if those contributions are comparatively small or not particularly newsworthy.

What is our quality of life, for we disabled people, we people with developmental or intellectual disabilities? We define it.

The moment people like this CHOP doctor state that people like us are ineligible to undergo a life-saving procedure because our quality of life is not good enough, we have lost. We have lost.

Because that is playing God. Who are you to determine whose life is worth living? Amelia's life is worth living. My life is worth living.

Your eugenic theory of ability-superiority can go to hell.

¹I believe this may have been in Adam Feinstein's A History of Autism, but I do not have a reference offhand.

Tired

2012-01-11T11:27:00.000-05:00

Trigger warning: This is mostly about ableism and a response to other, very triggering things, as well as including lots of direct quotes of ableist stuff.

An accessible audio recording:

Tired - Autistic Hoya by autistichoya

Tired

I'm tired of being misrepresented. I'm tired of seeing the principles of self-advocacy misrepresented. And I'm tired of seeing the autism rights movement misrepresented.

Let me be clear. I'm not talking about allies, or about people who were just thrust into Autismland and don't yet know much, if anything, about the constant conflicts that erupt here. This isn't about you.

This is about people who write things like John Elder Robison's "Looking forward at the autism spectrum," or Mark L. Olson's "Autism's Fly-Over Population," or the comments on Susan Senator's "The Parents Vs. The Autistics." It's been a week of frustrating, misleading, and outright hurtful writing.

And I'm tired.

I'm also a little bit furious and a little bit frustrated and desperate to write something. My hands are numb right now, and it has nothing to do with my feelings. It's kind of cold in here, actually.

Some background. John Elder Robison, as most people know, is famous because of his memoirs, Look Me In the Eye: My Life with Asperger's. So he is Autistic, though you'll almost never hear him use that word to describe himself, as he prefers the supercilious Aspergian. More recently, he wrote a book called Be Different: Adventures of a Free-Range Aspergian. Fairly recently, I think around 2009 or perhaps 2010, Robison accepted an appointment to the scientific advisory board of Autism Speaks, an organization notorious for its lack of meaningful representation of Autistic people in leadership positions as well as its harmful and ableist rhetoric. I personally cannot comprehend why any Autistic person in his or her right mind, fully informed, would want to work with or for Autism Speaks, but there you go.

And Susan Senator is the non-Autistic mother of adult Autistic son Nat, as well as the author of Making Peace with Autism, The Autism Mom's Survival Guide, and Dirt (a novel.) I don't always agree with her, but she writes well and is genuinely interested in engaging and dialoguing with Autistic people as equals rather than interesting curiosities. Her most recent article, linked above, engendered a spat of disgusting, disturbing, and sometimes outright frightening comments, mostly from non-Autistic parents.

I think I've read enough disgusting, disturbing, and frightening things last week. I've been triggered pretty badly a few times. In fact, I'm slightly worried about opening the tabs next to this one in my browser, where I have those three pages open, just to get the quotes for this post. If you've read this blog before, you've probably caught a significant change in the tone and style of this post from previous ones. And it's because I'm sick and tired of stuff like this.

(I'm inserting a second trigger warning here: a long list of direct quotes of incredibly ableist and possible very triggering stuff.)

"High-functioning autistic and Aspergers self-advocates who put themselves on an island by arguing that only the disabled can and should decide about the disabled to the exclusion of parents, family, caregivers and outsiders need to accept that they are only advocates for themselves, not the entire disabled population."
-Mark L. Olson, LTO Ventures and parent

Wrong.

All self-advocates are not "high-functioning autistic and Aspergers" as Olson so arrogantly generalizes. The assumption that Autistic people who do things like blog or use speech must therefore automatically be "high-functioning" is fallacious at best and actually harmful at worst. I know firsthand of not a few Autistic people who cannot consistently perform activities of daily living such as cooking, cleaning, keeping a schedule, traveling, or maintaining hygiene without assistance from a family member, friend, or aide. Yet some of those same people often face ridiculous assertions that because they must be so high-functioning or "just Asperger's," their advocacy clearly is illegitimate and unfounded.

Other self-advocates might never be called things like "high-functioning" were you to meet them in person. Amy Sequenzia, of Rockledge, Florida, an Autistic self-advocate who regularly meets with government officials and expresses her opinions rather eloquently in the media and elsewhere, does not speak and travels everywhere with an aide. She communicates by typing via alternative and augmentative communication. (By the way, Amy prefers to refer to herself as"autistic" rather than "person with autism." That too is not something that only "high-functioning people with Asperger's" do.)

And Sequenzia is not alone.

Self-advocates Larry Bissonnette and Tracy Thresher are both non-speaking Autistic adults who communicate via AAC. In childhood, they were presumed mentally retarded and ineducable. They were in segregated classrooms and never mainstreamed or integrated with students without disabilities. Bissonnette and Thresher starred in the 2011 documentary Wretches and Jabberers, which follows their advocacy. Both men have served on the Board of the Autism National Committee, an organization that includes both non-Autistic and Autistic people in the fight for civil rights, and whose constituency has traditionally been non-speaking Autistic people (or Autistic people with limited speech) and their families.

They too are not alone in fighting for Autistic rights. Sequenzia, Bissonnette, and Thresher are only three of innumerable non-speaking Autistic people who are self-advocates. The majority of non-speaking Autistics face even more discrimination than do those who have learned to use speech, and by no means are they excluded from the model of self-advocacy, self determination, and autism rights. Olson's assumption that all self-advocates are "high-functioning autistic or Aspergers" is grossly inaccurate and egregiously hurtful.

Non-Autistic parent Todd Drezner, in his 2011 documentary Loving Lampposts: Living Autistic, further explains why the use of the disputed "low-functioning vs. high-functioning" dichotomy is invalid and not useful when discussing Autistic people, and especially when dismissing so-called "high-functioning autistic self-advocates." In one segment of the documentary, Drezner interviews an elderly non-Autistic mother to an adult Autistic man in his 60s. "Lyndon is employed and lives by himself in his own apartment," says Drezner. "Is he high-functioning? His speech is severely limited and he needs support to perform life's daily tasks. Is he low-functioning? And would it make any difference at all in Lyndon's life if you could answer these questions?"

And what about people like Dora Raymaker? A board member of the Autistic Self Advocacy Network (ASAN) and Co-Director of the Academic Autistic Spectrum Partnership in Research and Education (AASPIRE), Raymaker does speak but prefers to communicate by text-to-voice. When she speaks, her words are not always articulate, as you can hear in Loving Lampposts: Living Autistic, and could lead the uninformed -- or people like Olson -- to make the assumption that she is "mentally retarded." Clearly, that is not the case.

Olson's second mistake is his blanket assumption that the principles of self advocacy seek to exclude "parents, family, caregivers and outsiders." That is not true. Self advocacy seeks to ensure that Autistic voices are always heard and prominently so in any conversation about autism, along with the voices of parents, family, caregivers, and outsiders. Autistic adults welcome non-Autistic allies. People like Todd Drezner, Susan Senator, Kristina Chew, Kim Wombles, and Amy Caraballo are living proof of that. (And again, these names are only a very representative few of the innumerable allies, many of them non-Autistic parents of Autistic children, and some of children who might be described as "low-functioning" or "severely autistic" -- insert a collective gasp of "WHAT REALLY THEY'RE NOT PARENTS OF ASPIES?" here.)

The principles of self advocacy are not that only disabled people can speak for disabled people, but that they must be involved with any advocacy. "Nothing about us without us" has been a motto of disability rights for a long time. There is nothing in that statement that suggests that non-disabled people have no right to be part of advocacy. What is at stake is that the most important stakeholders -- the people for whom the advocacy is occurring -- are routinely excluded, marginalized, and treated with the kind of contempt that Olson displays.

We, as Autistic people, whether we have been called "high-functioning" or "low-functioning" or both (at different times in our lives), have the right not only to advocate for ourselves individually, but for the rights and needs of Autistic people at large.

What I want to know, really want to know, is what parent in his or her right mind, would not want his or her child to advocate for him or herself? And what parent would not be proud of his or her child advocating for other Autistic people? When a non-Autistic sibling of an Autistic child starts an advocacy or awareness initiative, parents everywhere applaud. Why do you react with horror when Autistic youth and adults want to make the world a better place for your children? That's what involving Autistic people meaningfully in advocacy means. We're not in it for ourselves. We're in it to work toward a world where all Autistic people, children and adults, speaking and non-speaking, can live better, happier lives.

Why would you oppose that?

"The image of autism is going to get lots of attention as more children with autism age into adulthood. Those who don’t see autism as a disability are talking about HF or Asperger’s. The DSMV slated for 2013 will officially expand the spectrum to include Asperger’s and my fear is that 'Aspies' will become the face of autism. It’s much less disturbing to talk about autism and include who seems, outwardly at least, like the boy next door. It’s easier to believe that autism has always been around when we’re talking about someone with amazing abilities or high levels of intelligence combined with some quirky behaviors. My friends with severely affected children have tremendous fears about the future. They clearly don’t need their children further marginalized by those who advocate just for awareness and acceptance."
- Anne McElroy Dachel, Age of Autism

"When self-advocates’ autism talk shifts primarily to rights and entitlement, the need for new therapies, treatments, and services is forgotten. When we focus on entitlement, we create the impression that our problems can be solved by legislative action, much like the civil rights laws did in the sixties."
- John Elder Robison, Autistic author and parent of an Autistic son

Here comes another grandiose misconception. Autistic self-advocates, with some exceptions, are not people who "don't see autism as a disability." If you don't believe me, read closely the following sentences:

1.) I am Autistic.

2.) I am a self-advocate.

3.) I believe autism is a disability.

If you didn't catch that, please scroll up a little and read that again.

I do believe that disability is entirely defined by society, but because of our society and our history, yes, being Autistic means that I am disabled. All Autistic people are disabled. Some Autistic people might be more disabled than other Autistic people, but if you are Autistic, you are automatically disabled.

The people to whom McElroy Dachel appears to be referring probably belong to an "autistic supremacy" or "Aspie supremacy" kind of ideology, the kind of people who believe that being Autistic means they are better, more evolutionarily advanced, or more morally upright than non-Autistic people.

Most self-advocates aren't supremacists. We're not advocating for "Autistic supremacy." We just want equal rights. And yes, rights means services. It means accommodations. It means therapies. It means appropriate education. It means employment opportunities. It means housing opportunities. Rights isn't a vague euphemism for "we don't need help of any kind."

It's a bold, revolutionary statement demanding that the right of all Autistic people to equal access and opportunity as non-Autistic people be honored. And how is that right honored? At least partially, through appropriate services and accommodations, ad nauseaum. We have the right to receive services and accommodations without which we could not have equal access and opportunity. Some Autistic people would benefit from more services or accommodations, and others would benefit from very few.

Advocating for rights is not merely advocating for "awareness and acceptance." McElroy Dachel misses the point entirely. We want all Autistic people -- including non-speaking Autistic people, including Autistic people with self-injurious behaviors, including Autistic people with destructive or violent behaviors, including Autistic people who need an aide 24/7, including Autistic people who cannot complete higher education, including Autistic people who cannot travel on their own, including Autistic people who have not yet learned to communicate with non-Autistic people -- to have better lives. And that very often means better services and accommodations.

McElroy Dachel is wrong. And so is Robison.

"Could it be that on the autistic-side-of-the-dichotomy, they are not able to see/perceive/understand/know well-enough outside of their own specific-ability-disability to accept the parental-dimension of autism?"
- Barbara, self-identified as not a parent

This one just blows my mind. I can't win.

No matter what I say, it can't be me; it must be "just my autism talking," as Autistic writer Melanie Yergeau puts it.

So firstly, everything that I say or write is suddenly de-legitimized because (insert sarcasm here) obviously, an Autistic person is unable to understand someone else's perspective or that someone else might have different challenges or needs. Absolutely and unequivocally wrong. At least one study (I believe there were more, but without citations, [and I'm too tired to find them now] I don't want to list anything else) has demonstrated that Autistic people not only experience empathy, but in certain cases, experience more empathy on average than non-Autistic people.

And empathy has a lot to do with perspective-taking, doesn't it? I'm a writer of fiction as well as of this blog. (Currently working on my fifth and sixth novels simultaneously, in fact.) I of all people should know right away that the answer is yes. For one, in my writing, I seek to humanize all of the characters -- and I write crime novels that often focus on religious-inspired terrorism. (Disclaimer: I do not support or condone any form of terrorism for any reason. It's sad, but after the NDAA, that has to be there.) I want the readers to be able to empathize with the characters. ...and people like Barbara seem to think quite horrifically that people like me are incapable of perspective-taking and empathy.

It's sickening and dehumanizing in the worst sense. For my part, I think Barbara is the one lacking empathy here. Sorely lacking, at that. The irony never fails to astound me.

Secondly, her statement is so patently untrue. There are Autistic people who are also parents of Autistic children, such as Melody Latimer or Paula Durbin-Westby or Phil Schwarz (Autism National Committee). So obviously, Autistic people can understand and even appreciate from personal experience, "the parental-dimension of autism." By the way, all three people listed (who again, are only three people out of innumerable possible names) also happen to be self-advocates.

Thirdly, we Autistic people are more keenly aware of the diversity of disability in our own community than anyone else. How it could be otherwise? And as I've noted repeatedly in this rant of an essay, advocating for rights for Autistic people isn't just advocating for the rights of some Autistic people or of the so-called "high-functioning autistic or Aspergers" people. (Where are those people, by the way? I'm beginning to think they're almost mythical. At the very least, as Todd Drezner [again, a non-Autistic parent of an Autistic child] observed, it can not only be difficult if not impossible to define what makes someone high vs. low functioning, but also not particularly helpful in helping an individual person.)

"I think the dividing line in the autism community is ultimately if a person can achieve those goals of independence. At some point when a child is in 'transition' the parents (finally) have to acknowledge that their child will or will not meet the criteria for adult social service support (medicaid, SSI, and services). At that point, the life paths will differ between those that are 'high functioning' and those that need government supports."
- Marjorie Madfis, parent

Again, it's not so clear-cut. Kathryn Bjørnstad, one of the co-creators of Autistics Speaking Day, cannot travel independently. Kassiane Sibley, a highly articulate Autistic advocate, cannot cook and clean consistently for herself. Other Autistic advocates have noted that they do not live independently and or receive any number of government support or services. Most of the same people are blanketly labeled "high-functioning" in a frightening attempt to de-legitimize their voices.

If you blog, then you're obviously high-functioning and very fortunate. Therefore, you obviously have no place advocating for people who are far more disabled than you are.

That's how the assumptions go. And they're just that. Assumptions.

Blogging does not equal independent living. Writing does not equal using speech offline. Advocating does not equal being "high-functioning autistic or Aspergers." A large number of people who get called "high functioning" actually need government supports. And a large number of those people are unable to get the supports and services they need.

"Yes, I am upset that my daughter would rather play Pixie Hollow on her computer for hours rather than visit with a friend or interact on Facebook. And I do think this behavior will impede her from being able to lead an independent life. That is why I try to intervene – even though she does not like it."
- Marjorie Madfis, parent

What if she's happier playing Pixie Hollow? What if playing Pixie Hollow is a self-calming coping mechanism for anxiety, sensory overload, or social overstimulation? What if she, like a non-Autistic student in my computer science course this semester, simply sees no use for Facebook? What if she doesn't have friends who value her for who she is as an Autistic person?

Did you ever think to ask those questions, Marjorie?

Most times, most of those "behaviors" are our way of coping with a world not meant for people like us. It seems another lesson in empathy could be used here.

"So, the argument from HFA’s that the problem is the expectations of society, that people learn to mesh into societal norms of manners, eye contact, and reciprocal language (body and verbal) seems just that……A tantrum over not having it their way……"
- Yvette Hansen, parent

Can't win. No matter what we say, anything that challenges the status quo must be attributed to some terrible expression of our autism -- in this case, throwing a tantrum. A tantrum. It's reading ableist comments like this that sorely tempt me to actually throw a tantrum. But I don't. I write these articles instead, hoping (maybe in vain) that people like the ones I've quoted will read them and alter their perceptions, bit by bit.

(I won't even bother addressing the HFA thing here. That horse has already been beaten to death in this piece.)

But all I see here is another profoundly disturbing attempt to de-legitimize the voice of any Autistic person who expresses his or her frustrations. And all those expressions are met with such hostility and condescending accusations as Hansen's, which inevitable evokes only more frustration.

It's hard enough living a world where it is expected that a treatment protocol or behavior plan or intervention for an Autistic child or adult is in place ultimately to eliminate "Autistic" behaviors and replace them with "typical" ones. To make the recipient of those types of therapy appear and act as non-Autistic as possible.

That's not saying that all services and therapies are bad; many are very good and sorely needed -- the kinds of services, supports, and therapies that teach coping skills, cater to emotional needs, address sensory problems, accommodate in a classroom, assist with employment, and provide strategies for coping in social situations with non-Autistics. But these practical considerations are not the goals of most therapies or services.

So when we grow up learning that to be normal and healthy is to not be Autistic, when we are told to suppress obviously Autistic behaviors like echolalia or stimming, when we are sent to social skills classes for the purpose of making us appear more "normal" rather than giving us tools to better interact with non-Autistics, it can get very frustrating indeed. Hansen's utter lack of empathy for the enormous difficulties and anxiety that Autistic people face -- and especially the very verbal Autistic people who often get called "high-functioning" -- because of the pressure to pass is telling.

It hints at the deep, systemic ableism that penetrates not just society at large, but also an unwittingly large number of the parents of Autistic people.

"At the other end of the spectrum are the Aspies and HFA teens and adults like Jack and Kirsten [from the New York Times article "Navigating Love and Autism"] who are the focus of media coverage, movies, federal programs such as Medicaid and the President’s Year of Community Living. They are also the primary beneficiaries of the Protection and Advocacy (P&A) Network created by Congress and self-advocacy organizations bent on eliminating all barriers to living and working exactly the same lives as 'typical' Americans."
- Mark L. Olson, LTO Ventures and parent

Actually, the majority of so-called "high-functioning and Aspergers" Autistic people are often unable to access or receive the vast majority of supports and services. I don't understand why so many people automatically assume that the Autistic people who speak and or can go to college are also the beneficiaries of most supports and services. Because for those Autistics, the ones whose disability is far more invisible than visible, asking for any kind of support or services usually results in a metaphorically slammed door.

"You're asking? You? Well if you can ask, then you obviously don't need any help."

And whoever said that we wanted to live the exact same lives as non-Autistic people? Equal access and opportunity means exactly that -- access if desired and when desired, and opportunity if desired and when desired. Most Autistic people don't socialize the same way as non-Autistic people. Sometimes we have a different sense of humor. Sometimes we like to eat, work, and play in very different ways. So obviously, we're not advocating to live the exact same lives as non-Autistic people.

We simply want to be able to access a theme park. Or a movie theater. Or a church. Or the RMV. We simply want to have the opportunity to go to college. Or join a civic organization. Or vote. Or work in a field related to our skills and interests. Or live in an apartment or house where we feel safe and at home. And what's wrong with that? What parent wouldn't want barriers for their Autistic children eliminated? Olson's line of thinking seems twisted in incredulously ironic ways.

"Some disability self-advocates argue [that my daughter's] only option outside of my home should be in her own apartment or home no closer than 1000-1500 feet from any other disabled person."
- Mark L. Olson, LTO Ventures and parent

Um, no. The proposed Home and Community Based Services waivers under Medicaid, which you can read for yourself right here directly from the federal Government Printing Office, have no such stipulation about living such a distance from another disabled person.

They state that a home or community based setting

must be integrated in the community; must not be located in a building that is also a publicly orprivately operated facility that provides institutional treatment or custodial care; must not be located in a building on the grounds of, or immediately adjacent to, a public institution; or, must not be a housing complex designed expressly around an individual’s diagnosis or disability as determined by the Secretary [and] must not have qualities of an institution, as determined by the Secretary. Such qualities may include regimented meal and sleep times, limitations on visitors, lack of privacy and other attributes that limit individual’s ability to engage freely in the community.

The proposed regulations further state that

A setting that is integrated in the community is a setting that enables individuals with disabilities to interact with individuals without disabilities to the fullest extent possible. Further, we believe that such settings do not preclude individuals’ ability to access community activities at times, frequencies and with persons of their choosing. Such settings are not segregated based on disability, either physically or because of setting characteristics, from the larger community. In addition, such settings will afford individuals choice in their daily life activities, such as eating, bathing, sleeping, visiting and other typical daily activities.

These do not mean that a group home, a residential institution, or a closed campus setting could not receive government funding. Such settings will still be able to receive funding from any number of other sources.

What they do mean is that a home or community based placement is one where the person is not placed on the basis of being disabled, as in an institution or group home. A place that is not essentially a ghetto, segregated from the community, solely for disabled people. That's all. It says absolutely nothing about choosing to interact with, become friends with, or voluntarily choose to live with or on the same street as other disabled people. In fact, many of us Autistic adults like to be around each other. It gives us a sense of, you guessed it, community.

And as aforementioned, there are a large number of Autistic self-advocates who do in fact receive home-based services, including the services of part and full time aides to assist in activities of daily life. That can happen no matter where the person happens to live. So living in one's own apartment, a la Lyndon from Loving Lampposts: Living Autistic, is not mutually exclusive from receiving appropriate services and support.

"But as we enter 2012, I implore the autism community, media, government and especially those self-advocates who resist progressive thinking and innovation, to not forget the impact they have on our 'fly-over' population. Their story deserves to be told too. They deserve the right to choose how they want to live."
- Mark L. Olson, LTO Ventures and parent

Suddenly we are the ones who resist progressive thinking and innovation? Quite the contrary. We are advocating for more inclusion, more integration, better access, and more opportunity. Equal rights. The right to self-determination. The right to receive appropriate supports and services. The right to live in a fully integrated community setting -- with non-disabled and disabled neighbors -- or to choose, of one's own accord, to live in a setting like a group home.

And there have been a number of initiatives, many of them by Autistic self-advocates, to create progressive, forward-thinking workarounds to challenges with regard to employment, higher education, and even aviation security procedures.

I think we have here a case of selective vision. Censored and redacted vision, perhaps even.

"As the autism spectrum expands to encompass more people with progressively greater verbal and written communication skills, those individuals have begun speaking for themselves. By doing so, they are altering the public’s perception of what or who an autistic person is or may become. This reshaping of perception has moved the public’s concept of autism higher on the IQ range, with more and more people seeing 'autism' as a euphemism for 'eccentric geek,' or, 'genius,' which is [sic] most assuredly is not. Popular television shows like Parenthood and Big Bang Theory reinforce that trend. At the same time, the population of people with intellectual disability and severe autistic impairment remains fairly constant. Those individuals are not generally able to speak for themselves. They are most often out of the public eye, and they may rightly feel they are rendered nearly invisible by this change in perception."
- John Elder Robison, Autistic author and parent of an Autistic son

Maybe not to you. But in my experience, most people I've encountered picture a non-speaking child in a corner growing up to be an adult in an institution when I mention autism. Most people don't actually believe me when I tell them that I'm Autistic. (And I was diagnosed by a neuropsychologist who specializes in the autism spectrum and sat on the board of an autism organization.)

Furthermore, two studies, which you can read here and here, have shown that not only is the rate of intellectual disability in Autistic people far lower than it has been assumed to be for decades, but that intelligence (or IQ, more specifically) is regularly underestimated in all Autistic people, both those with the Asperger's label and those without it. So it seems that Robison is a bit behind in his facts.

In my experience, as an Autistic person with fairly invisible disability, I am not the face of autism. People do not look at me and assume that I am Autistic or associate my behaviors with being Autistic. When I disclose, I am frequently met with disbelief, dismissal, or denial. There has been very little change in perception of autism and what it means to be Autistic. And even less change toward the positive -- of viewing all Autistic people as neurologically different from non-Autistic people, not diseased or disordered, but genetically and phenotypically divergent. Sometimes in disabling ways. For many, in severely disabling ways. But being Autistic is not a negative or unfortunate or bad or defective or lesser or inferior way to be human. It's a different one.

"Every time a person with milder autism speaks of his own challenges, those words add to the body of information the public uses to define autism. The more we move that balance from disability toward eccentricity, the more we harm our cause, albeit unwittingly and with the best of intentions."
- John Elder Robison, Autistic author and parent of an Autistic son

Again. Whoever said that Autistic self-advocates, who again, are not homogeneously "high-functioning autistic or Aspergers," collectively deny that autism is a disability? Most of us are the first to recognize that being Autistic means being disabled.

And how can Robison not see how awfully offensive and insulting this statement is? So whenever a highly verbal Autistic person talks, he or she "harms" the cause. That's about as true as saying that whenever a white American woman convert to Islam who does not wear hijab speaks about issues facing Muslim women, she somehow unwittingly harms the cause of advancing civil rights for Muslim women. Is she any less Muslim than a Saudi woman who wears a face-covering niqab or a Pakistani woman from the tribal Pakhtunwala? She may not look stereotypically Muslim or behave (in this case by not covering) in stereotypically Muslim ways, but she is equally Muslim. Her voice is equally valid and equally important.

Autistic people who are not visibly disabled are still Autistic. Just because the average layperson would not immediately assume that I am Autistic does not mean that I therefore have no right to speak about my challenges or the challenges of other Autistic people. In fact, if I do not speak, if I stay silent, then the world will never know that Autistic people are as diverse in our being Autistic as Muslim women are in their being Muslim women. The more Autistic people who speak (literally or metaphorically), the more advanced our cause will be.

Whether it is Amy Sequenzia or me, not speaking is infinitely more harmful toward the autism rights movement than speaking.

"The autism spectrum still includes a large population – several hundred thousand in the US alone – who currently have no realistic hope of substantial employment. That is a tragedy. And it’s not because they are discriminated against. It’s because they are disabled. Not only that, they are disabled for reasons we don’t understand and in ways we don’t know how to fix."
- John Elder Robison, Autistic author and parent of an Autistic son

Actually, it is because they are discriminated against. Autistic people are routinely discriminated against because of their disability. Autism does not prevent a person from being able to work in a meaningful job using his or her skills and abilities. But discrimination does.

Any Autistic person, with appropriate supports, services, and accommodations, can work in a job using his or her skills and abilities. Some Autistic people can work in professions that might be considered impossible, such as in academia, the law, or medicine. Some might work in stereotypically geek professions, like in computer science or other technological fields. Others might work with animals, or in offices, or doing research in obscure but oddly specific fields. Autistic people can do just about anything non-Autistic people can do.

Can every individual Autistic person do any possible job? No. But neither can any non-Autistic person selected at random.

If a person who is perfectly capable and qualified for a job is not hired because he didn't make eye contact during the interview, and he doesn't make eye contact because it is infinitely easier for him to process what is said to him if not making eye contact, that's discrimination. If a person who is perfectly capable and qualified for a job is not hired because she doesn't communicate with speech, but can do the job without using speech, that's discrimination. If a person who is perfectly capable and qualified for a job is not hired because he needs a few minor accommodations and the employer doesn't want to deal with them, that's discrimination. If a person who is perfectly capable and qualified for a job is not hired because she needs an aide to accompany her, that's discrimination.

Robison is wrong.

And he's wrong again -- we understand exactly why autism is disabling. It is disabling because of the society in which we live. Let me quote from an earlier article, "Disability is a Social Construct: A Sociological Perspective on Autism and Disability."

Our culture says that to be fully functional and able means that one should be able to attend a mainstream school, complete university or vocational training if desired, obtain housing, obtain and keep a steady job, and marry and support a family if desired -- all without significant outside support or assistance. While it is considered socially acceptable to speak to a college counselor while in high school, see a math tutor for algebra or calculus, and even depend on one’s parents for financial support through young adulthood (twenties or so), an individual is not considered fully able and functional if he or she is unable to do one or more of those activities without significant amounts of support from others.

By this definition, the definition propagated and permeated throughout the societies in which we live, we Autistic people are disabled. Some of us may be more disabled than others -- as some of us are more able to participate in life activities with less amounts of outside support, and others of us do now and will throughout their lives only be able to participate in some of those activities with significant amounts of outside support.

It's perfectly understandable and perfectly explainable. There's nothing mysterious about it.

But I'm tired of explaining away misconceptions. I'm tired of picking my jaw off the floor after reading such outlandish accusations that I'm throwing a tantrum for not getting my way, or unable to empathize with other people's perspectives. I'm tired of seeing such incredulous statements by people who ought to care very deeply that there are other people, including Autistic self-advocates, trying to make the world a better place for their children. And by people who ought to understand a lot more than they do, as evidenced by their harmful and insulting assertions.

Are you tired, too, now? Because I am. And a few days ago, I almost threw in the towel. Because doing this is rarely rewarding and rarely satisfying. It rarely leads to closure and rarely creates lasting or meaningful change. It's wrought with frustration and disappointment, and frequent personal attacks. That's not just projecting either. It actually happens, and in public, too. Thoughts of leaving the hard work to other people crossed my mind. Maybe other people could deal with all of this. Maybe other people could accomplish things, and I could sit comfortably from the sidelines and applaud them when they received their due rewards. I don't have to do anything, after all. I almost made that decision.

But I didn't. I'm still here. And I'm tired. But I'm not defeated. And I'm far from done.

There's something wrong with you

2012-01-03T01:27:00.005-05:00

Trigger warning: Extensive discussion of ableism and identity.

An accessible audio recording of this post:

There's Something Wrong With You - Autistic Hoya by autistichoya

"I do have [autism] but I don't like to be reminded that I do. It makes me feel abnormal."

"There was something affecting and influencing my mind that wasn't...me."

"It's like I have a disease and there's something wrong with me."

Each of those quotes come from Autistic teenagers whom I know. And in all three situations, I felt powerless and terribly on edge, triggered by the statements that had just been made. The first came in a private message from a young woman, and was disguised as an offhand remark. The second came during a conversation over instant messenger during a conversation about sensory issues, and was written by a young man. The third came from a young woman during a social skills group therapy session, and at the moment she said it, she was crying with her shoulder shaking.

Each situation triggered me badly, but in every instance, the most adequate word to describe my emotional reaction was devastated. I was -- am still -- devastated that young people grow up believing that difference is bad, that autism is something terrible, that there is something wrong with them for being different, for being disabled.

That's how pervasive ableism is in our societies. The most well-meaning of parents, teachers, and professionals unwittingly, and in most cases, unintentionally, perpetuate this mindset -- that something is wrong with you if you happen to be Autistic. If you're different or disabled at all.

If you follow the rationale behind the vast majority of therapies and interventions for Autistic people to its natural conclusion, the end goal of most of these therapies and interventions is to make the Autistic person appear and act as non-Autistic as possible. Applied behavioral analysis works feverishly to eliminate stimming behavior. But the vast majority of stims, such as hand flapping or rocking or pacing or fiddling with objects, do not harm anyone. Including the person engaging in the behavior. What's wrong with stimming? The only thing wrong with stimming is that the vast majority of non-Autistics don't do it, and view most stims as bizarre or frightening. That's all. It's an attitude.

What is the purpose of most social skills therapy? To make an Autistic person indistinguishable from his or her peers. And of course, some therapies from out of left field like chelation, which have the explicitly stated purpose of looking to recover or cure Autistic people. (The point being to make the Autistic person actually become non-Autistic.)

This does not mean that all therapies or services are bad. Certainly not. It's a gross misconception at best and an egregious slander at worst to assert that "Autistic self-advocates" somehow oppose all forms of therapy or services or accommodations. There are positive means of therapy. Plenty of non-Autistic people benefit from seeing a counselor. So can Autistic people. Some Autistic people benefit from medications, often for co-occurring conditions like depression, anxiety disorder, or bipolar disorder. Many Autistic people can benefit from the services of a part or full time aide, whether to assist with travel or seeking employment or with taking care of hygienic needs. Some Autistic people might need more services and supports in order to live happily, while others might need far fewer services and supports -- and some might be able to thrive with none.

It's when the goal of therapy is to eliminate autism -- or the appearance of traits associated with autism -- that there is a problem. This is a reflection of ableist ideas in our society. Even the language commonly used when discussing autism reflects this ableism.

Despite best efforts from both person-first language advocates and Autistic people who oppose person-first language, major newspapers still write that people suffer from autism, or suffer from Asperger's syndrome. Reputable news sources often refer to autism as devastating and frightening and mysterious. Autistic traits are frequently described as deficits. Parents asked about their children often say, "I knew something was wrong with my child." Some parents talk about their children -- young or adult -- in this way even when their children are in earshot or sometimes the same room.

We understand what you are saying. We hear very clearly that something is deeply wrong with us. With our brains. Or with the way we are.

That's more than troubling. It's beyond frightening. The year is now 2012. People have been talking left and right about the successes and advances the autism and Autistic communities have made in the last year. Plenty of folks look forward to expanding initiatives, launching projects, continuing good work. It's the New Year. The prevailing attitude of a new year is always one of hope and optimism. Away with the old; it's a clean slate; we have a chance, 365 days of chances, to do something good and right and worthwhile. And that's perfectly fine.

But unless we can begin to grasp the depth of the ableist backbone to societal attitudes toward disability in general and autism in particular, we will not make any progress to combat these attitudes. More young people will break down in tears, confessing their deep-seated fear of being looked at as abnormal. More young people will be marginalized and made to feel alone. The societal insistence that something is wrong with you will drive more Autistic people into depression and anxiety and learned helplessness, and in some cases, to suicide. This external attitude, all pervasive in our societies, will turn into an internal mantra -- something is wrong with me.

Autistic children need to be taught from an early age that they are okay. That nothing is wrong with them. That there are people like them. That some of those people have gone on to become happy and successful in pursuing their passions. Autistic children need to know that they are different, but that different doesn't mean bad. Autistic children need to know that being Autistic means being disabled, but that disability doesn't mean inability to live fully or happily. Autistic children need to be around other Autistic children, so they'll know there are kids like them. That they're not alone. Autistic children need to have Autistic adult role models in their lives, so they'll know that people like them can grow up and learn to cope with the challenges of being Autistic in a world dominated by non-Autistics.

One Autistic child at a time; that's how the paradigm of something is wrong can change. That's how institutionalized ableism can be fought. Little by little.

I have a dream that one day, no Autistic children or youth will be subjected to something is wrong with you. I have a dream that one day, no Autistic children or youth will be found crying, terrified that some "disease" makes them "abnormal" and less than human. I have a dream that one day, all Autistic children will be raised to have confidence in themselves as people. I have a dream that one day, all Autistic children will know from an early age that they are okay. That nothing is wrong with them.

2011: Year in Review from Autistic Hoya

2011-12-30T14:14:00.007-05:00

This has been a whirlwind year for me and the Autistic Self Advocacy Network. Here are some dates! Let me know if any information is inaccurate, or if there are missing dates that should be added. Thanks!

- Year round: Several members of the Autistic Self Advocacy Network New England and another Autistic person serve on the Adult Services Subcommittee to the Massachusetts autism commission. Those are Dusya Lyubovskaya, Kevin Barrett, Phil Schwarz, Sara Willig, Joyce Kohn, and me.

- 29 January: I host book discussion group entitled "Characters on the Spectrum" concerning Jodi Picoult's House Rules novel.

- 1 April: Autistic Self Advocacy Network signs joint letter to Center for Disease Control concerning the problematic proposal to create the medical code "wandering."

- 2 April: Autistic Self Advocacy Network in Columbus, Ohio hosts coffeehouse showcasing creative material by Autistic people.

- April: Cafe Press agrees to allow shop owners who sell products with the tag "autism" to opt out of the April 2011 fundraiser for Autism Speaks.

- May: Loving Lampposts documentary juxtaposing the neurodiversity and pro-cure perspectives, from Autistic people, parents, Autistic parents, professionals, and others is released.

- 19 May: Massachusetts Joint Committee on Public Safety and Homeland Security holds hearing on bill to mandate training about autism for law enforcement and corrections officers. Autistic people and allies submit written and oral testimony.

- 26 May: Judge Rotenberg Center's Matthew Israel forced to resign under a plea bargain after being charged with lying to a grand jury and destroying evidence.

- 26 May: I presented and defended the findings of over a year of research into Autistic Characters in Literature at a public event.

- 25 June: Autistic Self Advocacy Network New England hosts focus group on Autism and Ethics for Autism NOW Center, with Ari Ne'eman keynoting.

- July: Autistic Hoya blog launches.

- July: Massachusetts Department of Developmental Services holds hearings on proposed regulations to severely restrict use of electric shock aversives by the Judge Rotenberg Center.

- 30 July: Wretches & Jabberers documentary about Larry Bissonnette and Tracy Thresher, two adult non-speaking Autistic men who learned to communicate by typing late in life, is released theatrically.

- 5 August: Neurodiversity Symposium at Syracuse University, with Ari Ne'eman keynoting.

- 1-5 August: Autism Network International's annual Autreat conference in Johnstown, Pennsylvania.

- 8-10 August: Autistic Self Advocacy Network presents the self-advocacy strand of the 2011 Autism Summer Institute at the University of New Hampshire's Institute on Disability.

- September: Thinking Person's Guide to Autism hosts the Self-Advocate/Parent dialogues that run for two weeks, including the perspectives of Autistic and non-Autistic people, as well as parents who are Autistic.

- September: Autistic Self Advocacy Network announces partnership with Freddie Mac to provide paid career-track internships for Autistic adults in return for training and education for interviewers and managers.

- October: Autistic Self Advocacy Network publishes Navigating College: A Handbook on Self Advocacy Written for Autistic Students from Autistic Adults, which is also available for purchase through the University of New Hampshire Institute on Disability.

- 1 November: Second annual Autistics Speaking Day, leading to the award for Exceptional Services to the Autistic Community for creators Corina Lynn Becker and Kathryn Bjørnstad. Autistics Speaking Day receives significant publicity.

- November: Massachusetts adopts the proposed regulations curtailing the use of electric shock aversives by the Judge Rotenberg Center.

- 16 November: Autistic Self Advocacy Network celebrates its fifth anniversary at the National Press Club in Washington D.C, honoring Bjørnstad and Becker as well as Nancy Thaler for Outstanding Ally of the Year.

- 10 December: Autistic Self Advocacy Network hosts the Symposium on Ethical, Legal, and Social Implications of Autism Research at Harvard Law School, after which federal grant reviewing boards look to include Autistic grant reviewers.

- 19 December: After launch of petition at Change.org by an Autistic person, Autistic student Emily Holcomb's mother, Jenny Holcomb, enters into successful mediation with school officials.

- 20 December: Georgetown University Department of Psychology and Psi Chi psychology honors society agree to include an Autistic researcher panelist, Scott Robertson, on an upcoming panel in February 2012 entitled "Multiple Perspectives on Autism."

- 21 December: Petition launched at Change.org by an Autistic person on behalf of Autistic student Chris Baker will gather close to 150,000 signatures after national media attention and publicity by Autistic people, non-Autistic parents, and other allies.

- 23 December: Autism Education Project unofficially launched.

- December: Launch of the Loud Hands Project: Autistic People, Speaking by Julia Bascom for the Autistic Self Advocacy Network.

Oh, and by the way, 2011 also saw the Arab Spring, the Occupy protests, the deaths of Usama bin Ladin and Kim Jong Il and Muammar Ghadafi, the nuclear plant panic in Japan, the repeal of Don't Ask Don't Tell, Anders Behring Breivik's killing spree, a power struggle between the Ayatollahs and Mahmoud Ahmadi-Nejad, and probably a few other things too. Those are just a few.

"People First - Create an Environment of Respect"

2011-12-28T00:17:00.008-05:00

That was the subject line of an email I received in response to the Chris Baker petition. But the email and my response to it speak far louder than any commentary I could make here.

Trigger warning: Hostility, ableism, and all that fun stuff.

Original email:

Lydia,

I respect and will eventually support your cause via Change.org. However I cannot in good consciousness sign such a disrespectful petition.

In the past "People First Language" has been the greatest of movements and arches into our modern day understanding of ALL people.

Please visit: http://www.inclusionproject.org/nip_userfiles/file/People%20First%20Chart.pdf

In your petition you continuously mention that Chris is "...an Autistic Student". This implies that Chris is Autistic, rather than Chris has Autism. By perpetuating this exclusive language, you and others are singling out Chris. He is a person first. No more and no less than you or I.

The correct usage would be to say: In Mercer County, Kentucky, nine year old Chris Baker has autism [or a diagnosis of ...], was told..

"complete extensive education regarding respectful treatment of Autistic students"

I applaud your consideration and concern for the teacher. The need to educate that person and in fact the entire school aboutstudents who have Autism or that may be diagnosed with Autism Spectrum disorders is admirable.

Kind Regards,

[Name redacted]
Advocate for People and Families Living with Brain Injury

My response:

Dear [name redacted],

Thank you for writing. While I appreciate your concerns and the reasons behind them, I respectfully disagree with your conclusions, especially as written in such a disrespectful email, and I am speaking to you as an Autistic person. I am Autistic, and that is how I identify myself. I, like the majority of Autistic adults and youth, intentionally do not use person first language to refer to ourselves or others who are also Autistic. The Blind and Deaf communities, like the Autistic community, have come to the same conclusion, with the majority of their and our constituencies choosing to use the proper adjective or noun in place of person first language.

We are aware that the majority of other disability groups or communities, including the traumatic brain injury community, prefer to use person first language, and the default for most of us is to defer to the majority consensus of the people with that disability or disabled in that particular way. For example, in reference to intellectual disability, the prevailing majority consensus among that community is to say "person with an intellectual disability," and so in reference to a person with intellectual disability, we will typically defer to that language; however, in reference to autism, the majority of adults and youth on the autism spectrum prefer to say "Autistic person," and so in reference to a person on the autism spectrum, we will typically say "Autistic person." The exception is for the minority of adults and youth who explicitly prefer to be identified as "persons with autism," and in reference to those specific individuals, that language will be used.

In this respect, the language that I have chosen -- which I have done so very intentionally and thoughtfully -- is the most respectful language that I can use, because it defers to the majority consensus of the population so described. When very well-meaning and well-intentioned advocates and members of the community writ large such as yourself insist that we use certain language to describe ourselves against our own stated and explicitly argued wishes, you are essentially telling us what offends us. I, and many others in the community of Autistic adults and youth, do defer to the majority consensus of any disability group when referring to people from those respective disability groups, because that is following the wishes of the constituency so described. I ask respectfully that you do the same in reference to us.

Jim Sinclair, one of the first Autistic people to extend the principles of the disability rights movement to the Autistic community, wrote a seminal essay in 1999 entitled "Why I dislike 'person first' language," which you can read at this link (or here: http://www.cafemom.com/journals/read/436505/). Since then, a number of Autistic people of all levels of visible or invisible disability, have written similar essays, including myself. I have personally written two essays that articulate all of the reasons why I do not ascribe to person-first language, one republished at the Thinking Person's Guide to Autism among other locations, and the other located at my own blog, on the topic. The first is called "Person-First Language: Why It Matters (The Significance of Semantics)" (or http://thinkingautismguide.blogspot.com/2011/11/person-first-language-why-it-matters.html) and the second is called "Identity and Hypocrisy: A Second Argument Against Person-First Language" (or http://autistichoya.blogspot.com/2011/11/identity-and-hypocrisy-second-argument.html).

Lea Ramsdell, writing about identify politics, asserts that "[l]anguage is identity and identity is political." The majority of us who are Autistic and who prefer to be identified as Autistic people do so because being Autistic is as much a part of our individual identities as being American, Christian, or Asian are for me. I do not refer to myself as a person with Americanness, Christianess, or Asianness, and thus I am not a person with Autism either. It is not an inherently good or bad thing to be American, Christian, or Asian, nor is it an inherently good or bad thing to be Autistic. It is simply a part of my identity. Autism is not something from which I can or ought to be separated.

You yourself write "He [Chris] is a person first. No more and no less than you or I." which to me is only a further representation of why person-first language cannot and should not be applied to person first language [sic: should say "autism"]. Use of person first language implies that there is some additional need to verbally recognize the humanity of the person so described, as if by him or herself, he or she does not quite qualify for personhood. Why can I say that I am American or that I am Christian or that I am Asian and do so without fear of being called insensitive or disrespectful to other people who could be described that way? Because we have in our society come to terms with accepting those labels as identity labels, and that people who can be described with those labels are inherently people. We have not yet done that with autism, although recognizing that a person is Autistic ought simply to be recognition of that person's humanity -- as an Autistic person.

Elesia Ashkenazy, also an Autistic and Deaf person, wrote a petition on Change.org explaining very briefly some of the reasons why we do not ascribe to the use of person-first language (http://www.change.org/petitions/understand-autism-first-language), that you may also find to be of interest to yourself. I think a quote from my own essay (the first one linked) summarizes it well.

Yet, when we say "Autistic person," we recognize, affirm, and validate an individual's identity as an Autistic person. We recognize the value and worth of that individual as an Autistic person -- that being Autistic is not a condition absolutely irreconcilable with regarding people as inherently valuable and worth something. We affirm the individual's potential to grow and mature, to overcome challenges and disability, and to live a meaningful life as an Autistic. Ultimately, we are accepting that the individual is different from non-Autistic people -- and that that's not a tragedy, and we are showing that we are not afraid or ashamed to recognize that difference.

Stating that I am Christian or American or Asian recognizes that I am different from Muslims or Atheists, Egyptians or Koreans, or Africans or Europeans. It does not mean I am lesser because I am not the latter category. It does not mean I am less human -- or more human. These are descriptor labels of identity. We understand the word Autistic or phrase "Autistic person" in the same way. It is an identity label, and one that may be more or less important to specific individuals whom it describes (as labels like Christian or American or Asian may be more or less important to specific individuals whom they describe), but it is an accurate and honest means of describing my identity. I am Autistic.

Thus, while I thank you for your time in sharing your thoughts with me, I must share why I have come to the opposite conclusion firmly and resolutely, having read and understood the reasoning behind use of person-first language in reference to autism, and being myself an Autistic person or a person who is Autistic. If you can, please take the time to explore the links that I have shared with you, as those articles provide additional information about why the majority of Autistic adults and youth prefer to identify as Autistic rather than "persons with autism." If you sincerely wish to engage in respectful dialogue with and about Autistic people -- and I believe that you do -- then please take into consideration that those of us who are Autistic have the right to determine what we consider to be respectful language.

Blessings and peace,
Lydia

______________

Lydia Brown
[contact information redacted]

Do you know an Autistic student preparing for or attending college or university? The Autistic Self Advocacy Network has announced the publication of Navigating College: A Handbook on Self Advocacy Written for Autistic Students from Autistic Adults. For more information, visit the Navigating College website, or to order a print copy, visit the University of New Hampshire Institute on Disability bookstore.

"Evil is not the absence of righteousness but of empathy."
— Mohsin Hamid

"Everybody is a genius. But if you judge a fish by its ability to climb a tree, it will live its whole life believing that it is stupid."
— Albert Einstein

This message is intended for the designated recipient(s) only. It may contain confidential information or be subject to confidentiality protections. If you are not a designated recipient, you may not review, copy, or distribute this message or any attachments. If you have received this message in error, please notify the sender by reply e-mail and immediately destroy this message and any attachments. Do not retain, copy, or use this e-mail or any attachment for any purpose, nor disclose any part of the contents to any other person by any means.

Can ordinary people effect change?

2011-12-22T21:26:00.007-05:00

Trigger warning: Abuse and torture of an Autistic person by a teacher.

Update 30 Dec. 2011: Close to 150,000 people have signed the petition.

Update 27 Dec. 2011: Over 75,000 people have now signed the petition.

Can ordinary people effect change?

If you'd asked me that question even a few months ago, my answer would have been a snide, "Only if those people have powerful connections and money." In the last week or so, that cynicism went out the window. First, with the successful result of the petition in Alabama this Monday, and now, with national attention turned to Chris Baker's case in Kentucky, I can make no case for pessimism ever again.

What happened with Chris?

LOUISVILLE, Ky. (AP) — A 9-year-old autistic boy who misbehaved at school was stuffed into aduffel bag and the drawstring pulled tight, according to his mother, who said she found him wiggling inside as a teacher's aide stood by.
The mother of fourth-grader Christopher Baker said her son called out to her when she walked up to him in the bag Dec. 14. The case has spurred an online petition calling for the firing of school employees responsible.
"He was treated like trash and thrown in the hallway," Chris' mother, Sandra Baker, said Thursday. She did not know how exactly how long he had been in the bag, but probably not more than 20 minutes.
...
Chris is a student at Mercer County Intermediate School in Harrodsburg in central Kentucky. The day had barely begun when his family was called to the school because Chris was acting up. He is enrolled in a program for students with special needs.
Walking toward his classroom, Baker's mother saw the gym bag. There was a small hole at the top, she said, and she heard a familiar voice.
"Momma, is that you?" Chris said, according to his mother.
A teacher's aide was there, and Baker demanded that her son be released. At first, the aide struggled to undo the drawstring, but the boy was pulled out of the bag, which had some small balls inside and resembled a green Army duffel bag, Baker said.
"When I got him out of the bag, his poor little eyes were as big as half dollars and he was sweating," Baker said. "I tried to talk to him and get his side of the reason they put him in there, and he said it was because he wouldn't do his work."
Baker said when school officials called the family to pick him up, they were told he was "jumping off the walls." Days later, at a meeting with school officials, Baker said she was told the boy had smirked at the teacher when he was told to put down a basketball, then threw it across the room.
At a meeting with school district officials, the bag was described as a "therapy bag," Baker said, though she wasn't clear exactly what that meant. She said her son would sometimes be asked to roll over a bag filled with balls as a form of therapy, but she didn't know her son was being placed in the bag. She said school officials told her it was not the first time they had put him in the bag.

Read the rest of the Associated Press article here, or on any of the literally dozens of local and national news syndicates that have republished it in the last few hours alone. That's right -- this news article has been republished in dozens of places, gathering over four hundred comments at Yahoo and hundreds of views. The petition, which had several hundred signatures as of earlier today, now has well over 1,200, and the number continues to swell every several minutes. (It should be 1,300 soon.)

I had been called earlier today by staff for Change.org, Katie Bethell, who works to publicize and advance education-related campaigns. Katie put me in touch with an AP reporter, Janet Blake, who asked about Chris's situation and the petition campaign. How does Change.org work? Every time an individual signs the petition, an email is sent to all fourteen targets containing the text of the petition. So far, that's over 1,200 emails to the entire Board of Education in Mercer County, and the principals of each school in the county.

The school has not yet announced firing the teachers involved, nor formally responded to the demands in the petition that would mandate extensive training about autism and other disabilities for all special education teachers, basic training about autism and other disabilities for all non-special education teachers, and an explicit prohibition of the use of any kind of restraint or seclusion on any student except briefly and as a last-resort emergency measure. That kind of training would give teachers a better foundation for interacting positively and meaningfully with their Autistic students and students with other disabilities, and prevent a majority of these kinds of incidents.

But I am hopeful now that with increased national attention, enough pressure will force the Board of Education to take action.

Torture and abuse are always wrong. You couldn't do this to an "enemy combatant." You couldn't do this to an animal. You couldn't do this to your own child without having Child Protective Services removing your child from your home. It's not okay for teachers to do it either.

Yes, ordinary people can effect change.

Letter to my AP English Teacher

2011-12-21T23:48:00.006-05:00

Trigger warning: Incident of ableism from a teacher.

21 December 2011

Dear [name redacted],

Do you remember what you said to me last fall?

I walked into your classroom during the fifteen minute break period. I probably had a question about our senior Globe project. Maybe I was reciting my lines. When I went to leave, you asked if I knew where two other seniors were. "They're probably in the senior hallway," I said, and you asked if I would go check. "Oh, I never go in the senior hallway," I responded. You asked why. "I have sensory issues, and I can't go into the senior hallway," I said.

Do you remember that? Maybe you remember what you said to me next. You looked me in the eye unflinchingly, and spoke in a firm, certain tone.

"You're just going to have to get over that."

For a few seconds, I'm sure, I stared at you in shock. Excuse me? "I don't 'get over' my sensory issues; sensory processing disorder is a neurological disability; it doesn't 'go away' and I can't 'get over it.' I can and do develop coping mechanisms, but I'm never going to 'get over' sensory processing disorder." Not to mention how presumptive, ableist, and insulting you were. I don't remember what else I said, only that I spent a good two minutes or so angrily explaining the nature of SPD.

Later that year, I heard that you told another student with a learning disability the same thing when that student went to talk to you about something -- possibly to ask for help or an informal accommodation, although I don't know the details.

Ever since, I have intended to write this letter. It's now December 2011, well over a year after this happened. I might have been dissuaded of the notion simply because of the long lapse in time between the original incident and today's date, but what you said to me cannot be forgotten, excused, or overlooked. It's far too significant and it was far too hurtful for that to be even a possibility.

How can you, an educator and a mother, look a person in the eye who has disclosed an intimate detail of his or her difficulties in your world, and say, "You need to get over that" to that person's face? It takes immense courage for most people with invisible disabilities (those that are not necessarily apparent simply by looking at an individual) to disclose their disabilities to non-disabled people, because people like you apparently cannot grasp the concept of an invisible disability. Simply because you cannot see it the way you could see a thin white cane or a wheelchair does not mean that it does not exist, is not real, or does not truly impact an individual.

How can you, an educator and a mother, listen to what someone has told you in explanation of some part of him or herself, and respond in such a dismissive and condescending manner? While those of us who are part of the disability community (people with disabilities or disabled people) may diverge on the relative importance we assign to our individual identities as a person with a disability or disabled person, disability (or ability) is an inherent part of an individual's identity and life experience -- in the same manner as race, religion, or sex. There is nothing more condescending than to talk to a disabled person or person with a disability and assume that you know more about his or her condition than he or she does. There is nothing more dismissive than to talk to a disabled person or person with a disability and suggest that that person can in fact make his or her disability go away.

Would you tell a man using a wheelchair that if he just "got over" his problems, he could walk? Would you tell a Blind woman that if she just "got over" her problems, she could see? Would you tell a Deaf man that if he just "got over" his problems, he could hear? I didn't think so. You wouldn't say such a thing, because nearly any rational person would be rightfully outraged at the mere suggestion. But you, [name redacted], seem to think that it is acceptable to tell a person with an invisible disability that if he or she just "got over" his problems, the disability would go away. There is so much wrong with that statement that I can hardly begin to dissect it. It reeks of ableism.

Do you know what ableism is? Merriam-Webster defines ableism as "discrimination or prejudice against individuals with disabilities." Ableism takes many forms, as it is necessarily manifested differently against people with physical disabilities as opposed to people with mental disabilities, or people with learning disabilities, or people with cognitive, intellectual, or developmental disabilities. In our community -- that is, the community of people with disabilities, and in particular, the community of Autistic youth and adults -- a very common experience of ableism takes place when a non-disabled person dismisses characteristics of our disabilities as valid, legitimate, or genuine merely on the basis that he or she does not experience that particular characteristic.

And that is precisely what you did when you said that to me -- and to that other student. You do not have sensory processing disorder. To my knowledge, you are not learning-disabled. How then can you claim that if I would only "get over" my sensory issues, they would go away? You do not live with sensory processing disorder. You have never experienced sensory processing disorder, and it is impossible for you to experience what it is like to live as me. (To suggest that you could appropriate my life experiences and daily perceptions of the world would be arrogant beyond belief.)

You seem to think that if I would only work harder, my sensory issues would go away. If I were only strong and persistent enough, I could make my disability disappear. Well, if I were determined enough, according to what you yourself implied with your ableist remark, I could stop making up petty excuses for eccentric habits and get in touch with the real, adult world! (If the sarcasm is not evident, let me explicitly acknowledge it here.) Can you begin to comprehend how insulting that is? While this ought to be self-explanatory, it seems that I ought not to take any chances by assuming that you understand the depth of your offense.

By suggesting that I can "get over it," you directly imply that I am not putting enough effort into coping with the challenges that I face, thereby suggesting that I am lazy, unmotivated, or unwilling. By suggesting that I can "get over it," you directly imply that my disability is not real, thereby suggesting that I am wont to make excuses for atypical behavior. Are the pieces starting to fit together now?

You do not tell a disabled person or person with a disability to "get over" his or her disability. That remark is as ableist as the n-word is racist. It is inexcusable and unacceptable. For an educator, it is appalling and ignorant.

Do you remember what you said to me last fall? I hope you do. And I hope you never repeat it to anyone else ever again.

Blessings and peace,

Lydia

For those who are curious, the letter was in fact sent to the teacher, and the teacher responded, initiating a dialog.

When the Educational System Fails

2011-12-09T01:23:00.008-05:00

UPDATE: 21 Dec. 2011: Jenny Holcomb, Emily's mother, announced a successful result from mediation with school officials this Monday, due in no small part to the political pressure from the over 1,100 signatures on the petition.

UPDATE: 13 Dec. 2011: You can view the full signatures list as of 1:20pm EST (6:20pm GMT) here!

UPDATE: 11 Dec. 2011: I have written and posted a petition to Change.org demanding serious changes be made in the next year in Marion County to prevent this kind of abuse. Please sign and share!

UPDATE: 10 Dec. 2011: Jenny Holcomb, Emily's mother, announced that the charges have been dropped. The fight isn't over yet, though; Jenny still needs to meet with school officials in mediation to demand appropriate services and education for Emily.

WHEN THE EDUCATIONAL SYSTEM FAILS

...again. This time, it's Hamilton High School in Marion County, Alabama. A little after this October, Emily Holcomb, fourteen year old non-speaking Autistic student, was ordered out of school after school officials had the district attorney's office file first degree assault (a felony) charges against Emily for "hitting" and "shoving" her teacher, apparently causing a "minor injury" -- really, open-handed swipes and trying to push away from a woman (the teacher) who had physically restrained her for fifty-five minutes. Fifty-five minutes. Fifty-five...

That's abuse.

And now the school, after having negotiated an individualized education plan (IEP) including the services of a full-time aide specializing in autism, has decided that criminal charges are the way to go. Yes, that's right. Criminal charges. Go ahead and read the news story here if you find this to be too bizarrely incredulous.

Now, Zakhqurey Price, does anyone remember that name? He was an Autistic fifth grader in 2009 charged with assault when, after calming down from a meltdown, his teachers decided to corner and restrain him, and he (predictably) lashed out.

Why do school systems feel the need to criminalize autism? This blog tends to focus on issue and philosophy centered articles related to autism and advocacy, but this horrific, tragic turns of events is only more evidence of the deeply-rooted systemic problems in the way our country looks at differently-abled or disabled people, especially Autistic people. And something needs to be done. And something can be done -- by you and I, sitting here and reading this post. In fact, I've already created a Facebook group where you can read about the case and see updates.

But for now, what can you actually do to help? You can write, email, or call the school's superintendent who filed the complaint, the district attorney of Marion County, and the deputy district attorney who seems to be handling the case, asking them to drop the case and any charges. Emily needs help, and she needs help now. This isn't some fancy theorizing or overly intellectual model of some idea -- this is the life of an actual person whom someone is trying to destroy.

Demand that the school request the District Attorney's office drop all charges. Demand that the District Attorney's office refuse to prosecute the case. Remember to be polite and respectful. Explain that restraining Autistic people for fifty-five minutes is abuse. Explain that slapping outward is a defensive mechanism, not a violent act. Explain that Autistic children need caring, encouraging teachers who respect them, NOT criminal charges.

Mr. Ryan Hollingsworth

Superintendent, Marion County Board of Education

Marion County Schools

188 Winchester Drive, Hamilton, AL 35570-6626

(205) 921-3191 office

(205) 921-7336 fax

ryanh@mcbe.net

Jack Bostick

District Attorney

Marion County Alabama Courthouse

132 Military Street S, Hamilton, AL 35570

Phone: 205-921-7403

Paige Nichols Vick

25th Judicial Circuit

District Attorney's Office

PO Box 1596, Hamilton, AL 35570 1596

Phone: 205-921-7403

Tips for Letters and Phone Calls

Beginning of letter, introduce yourself (name, city and state) and your connection to autism (if any), as well as any organizational affiliations or professional credentials.
If a phone call, ask politely for "Mr." or "Ms." [name].
Be respectful, using proper greetings and forms of address, even if you think the subject(s) deserve(s) no respect.
Be polite, as this always adds power to your words. Polite here meaning writing in such a way where you do not intend to offend or insult.
Use proper grammar, spelling, capitalization, and punctuation. This adds professionalism.
Be succinct. Don't write a ten page novel. The subject will not read it. Guaranteed.
Be personal, if you have a personal story or connection. Make sure the subject knows why you care.
Be firm. You know you are in the right.
Explain why this is wrong. Tell the subject why it is wrong to criminally charge an Autistic person for an action that wasn't malicious, intended to be harmful, or offensive (meaning unprovoked).
Demand that charges be dropped immediately.
Conclude by thanking the subject for his or her time and consideration.
Sign with a professional greeting in a letter.
Include your full name, city and state, and address (home or work) at the top of the letterhead or beneath your signature in a letter.

And please, pass on this link. The more voices are heard, united behind Emily against the people who somehow think it's appropriate to criminally charge an Autistic person reacting defensively to people who were essentially abusing her, the larger and greater the possibility we can actually effect change. Yes, actual change. Strangers on the internet have that power; now it is time to exercise it.

I didn't speak up

2011-12-07T21:49:00.005-05:00

Trigger warning: Use of the r-word and detailed description of a bullying incident by an authority figure.

It was eighth grade. Our history teacher, Mr. S, gave us a vocabulary quiz every Friday with words that I later discovered were on most SAT vocabulary memorization lists in order to broaden our vocabulary. To get full credit, you needed to spell the word correctly, recall its part of speech, and write the definition Mr. S had given us word for word. It was one of very few things that I believe he did well, and certainly augmented my vocabulary. But Mr. S was not a good teacher by any stretch of the imagination. He was fired at the end of the year, and he honestly ought to have been fired sooner for the way he treated his students. You see, teaching is far more than possessing book-knowledge and writing exams. Excellent teachers are those who empathize with their students, are genuinely concerned about their emotional and intellectual well-being, and whose actions and speech to and about their students are respectful of their dignity.

I had a close friend in eighth grade, Ben*, who was in all of my classes. Our school divided the 120-odd eighth graders into four sections, with whom students had all of their classes except math. My section included four other students receiving special education services, including Ben, all of whom were widely known to have learning disabilities and whose disabilities were often highly visible. Ben has multiple disabilities -- dyslexia, attention deficit disorder (ADD), and another unspecified learning disability. He was several grade levels behind in his spelling abilities. (One time, he spelled very simple words wrong.) Other students often bullied Ben because he was short, overweight, and learning-disabled.

One time at recess, another student said to me, "You're a retard because you hang out with retards." I don't remember what I said. I like to think I said that neither Ben nor I were retarded. But I don't remember.

Another time, the four other students receiving special education services all happened to be out of the classroom at the same time for scheduled services during Mr. S's history class. "Now that a certain four people aren't here," sneered Mr. S from the front of the room, sarcasm dripping from his smile, "we can actually get some work done." The class laughed. I shifted my weight uncomfortably in my seat. I couldn't look at Mr. S. I tried to pretend he hadn't just said what he'd just said, but how could I?

But at least those students weren't there when Mr. S said that. That wasn't the worst.

It was a Friday afternoon. Our history class was lazy and tired and wanted the week to be over. We had several words on that week's list, including a word that I had discovered great pleasure in repeating -- vicissitude. None of us wanted to take the quiz. (After all, what eighth graders do you know who would enjoy these weekly vocabulary quizzes?)

"I'll make a deal," said Mr. S. He looked about the classroom as people straightened in their seats, eagerly waiting to hear his offer. "Ben, come up here." He looked at my friend as Ben complied and walked to the board. "If Ben spells vicissitude correctly, I'll give you all one hundred percent." All eyes were on Ben. I remember hearing someone snickering. Someone else cheered, "Yeah, Ben!"

He picked up the dry erase marker and faced the white expanse of the board, squinting closely. Some of us encouraged him. I had been studying with him earlier in the week to help him memorize the vocabulary words. With prompting and encouragement, he eventually spelled the word vicissitude.

But it shouldn't have happened. None of it. I should have spoken up. I wish I had said something so badly.

But I didn't.

In the last few weeks, I saw two stories in the news about special education students who made recordings (one video, one audio) of their teachers verbally abusing and bullying them (1).

Why does this happen? Why did I grow up in a school where that behavior was tolerated and allowed to happen? Why did it take the whole year before Mr. S was fired? Did no one go to the administrators? Or did the administration not care enough? Why did no one else speak up? Why couldn't I say something?

We're supposed to be able to trust our teachers. We are in their care and custody. They exercise great power over us while we are their students, particularly when young, and the words that they say can irreparably harm and have long-lasting repercussions far beyond the classroom. I know a person with a learning disability who was diagnosed with post-traumatic stress disorder because an elementary school teacher spent an entire year bullying and abusing her.

This is not an isolated problem. These are not isolated incidents. They are indicative of serious, systemic problems both in our educational system and in our society. This is not the fault of the individual teacher's alone, but our entire communities share in culpability for these horrific actions. The school administrators and other teachers, the students who are bystanders, the policymakers, the people who encourage and promulgate ideas about the inferiority or otherness of people with disabilities.

And me. I didn't speak up. And doesn't change start with one person? One butterfly flapping its wings alone can cause a hurricane on the other side of the world. I wish I had been that butterfly.

(1) Hibbard, Laura. "Julio Artuz, 15-Year-Old Special Needs Student, Records Teacher Verbally Abusing Him." Huffington Post. 18 November 2011. Retrieved 8 December 2011.

* Ben is not his real name, although S is the teacher's initial.

Advocacy and Ableism

2011-12-05T23:12:00.003-05:00

Trigger Warning: Extensive discussion of ableism.

I mentioned to a family friend who has known me since early childhood that I've been involved with autism advocacy. She blinked, inclined her head slightly to the side, and asked, "Have you worked with children with autism?"

"No, actually," I responded in a calm, even tone. "I'm Autistic, and I know plenty of us." She stared, a little in confusion, as if not quite sure how to respond to that statement.

It's a question I get far more frequently than I like to admit or think about. Why does everyone automatically assume that because I can -- and do -- speak, and because I advocate, I must therefore be the relative or friend of an Autistic person, but not possibly Autistic myself? (And I have been diagnosed, in fact, by a neuropsychologist who specializes in ASD and who has sat on the board of an autism-related organization.)

And another thing. I had a conversation maybe a year ago with an acquaintance of mine, to whom I disclosed that I am Autistic. She responded, "But you're so smart!" And another acquaintance, at the same disclosure, interjected with, "But you seem normal to me." I'm expected to take this as a compliment. For some reason, looking normal makes me more human, because looking Autistic is a bad thing, something to be avoided, a taboo.

Why?

Some of you might not be familiar with the term "ableism." Some of you might be very painfully aware of it. For those who aren't, let me summarize. Ableism is the belief or attitude that an individual or group of individuals are superior or more human on the basis of their ability than people with disabilities, including Autistic people. Ableism is the belief or attitude that people with disabilities, including Autistic people, cannot have agency, cannot really advocate for themselves, should be pitied or cured, and cannot accomplish much so long as they continue to be disabled.

It's like racism, but against us. Me.

I grew up in a privileged suburb of Boston that around the 2010 census last year, still had over 90% White (Caucasian, European-American) people in the population. Less than 4% of people in my hometown were below the poverty line. Some houses went for a few million dollars. Walking around my hometown, you won't see homeless people or gang members on street corners. You won't see poverty or even much diversity. I hadn't thought about racism much because despite being Asian, I lived in a fairly homogeneous area and went to a regional school with a very culturally diverse student body.

That's privilege. It's not always recognized, acknowledged, or understood, but that's what it is. I never expected to be discriminated against on the basis of my race or religion (I'm a Protestant Christian in an area where a decent majority of the population identifies as some form of Christian), and never experienced that kind of discrimination. No racism here.

But ableism was a different animal altogether. I can't tell you how many times I've been told, "Well you're not really Autistic" or "You seem to be very high-functioning" or "I don't think you're really Autistic." And every time I mention my advocacy work, the mild look of curiosity, head tilted to the side, innocent, almost hesitant question -- "So do you know someone...?"

Why can't I be an advocate and Autistic? Why is it assumed that the only possible reason I would have any involvement or leadership in autism advocacy is having an Autistic relative or friend who certainly couldn't advocate for him or herself, and therefore I must advocate for this individual?

Parent advocates certainly have a time and a place and a valued opinion when advocating for their own children -- as minors -- or when allying with those of us who are Autistic in advocating on the larger level. I'm not writing this to disparage your role, undercut you as advocates, or accuse you of bad parenting. I'm writing this because I'm sick and tired of ableist attitudes -- whether from you or anyone else. (And certainly not all non-Autistic parents of Autistic children think in ableist ways. The problem is that plenty do. Many. Maybe even a majority.)

Think of it like this. Imagine an African-American/Black Civil Rights group led by a board and staff of White people, claiming to speak on behalf of all African-American/Black people, whose (White) leaders are thought of as revolutionary and innovative civil rights activists and advocates, and who rarely, if ever, include actual African-American/Black activists and advocates in their leadership or planning or policymaking. Or a LGBTQ Civil Rights group led by a board and staff of cisgender heterosexual people, claiming to speak on behalf of all LGBTQ people, whose (cisgender heterosexual) leaders are thought of as revolutionary and innovative civil rights activists and advocates and...

Both of those ideas would be abhorrent or objectionable to most African-American/Black people or LGBTQ people, and probably laughable even to potential opposition to the aims of those civil rights movements.

So why is this not only acceptable but the norm in autism advocacy?

Why is it assumed that Autistic people have no agency, are not competent, and cannot possibly understand the intricacies of advocacy?

Why does every person I meet assume that my advocacy makes me the non-Autistic relation to an Autistic person?

It's not something I can begrudgingly accept or resign myself. It's wrong. It's grossly unfair. It's ableist. And every single time it happens, I wince; my breath catches in my throat; my voice tightens; I can barely speak; the words struggle to slip past my lips; I look the person in the eye; I say, "Actually, I am Autistic. A large number of us are advocates."

Identity and Hypocrisy: A Second Argument Against Person-First Language

2011-11-28T05:46:00.001-05:00

You can read the first argument at “The Significance of Semantics: Person-First Language: Why It Matters,” which was published in August 2011.

I keep being reminded of the philosophy behind “person-first language,” which I have discussed and critiqued at length in a previous article. Let me now ask a different set of questions and explore a different set of arguments, which I have not heretofore had the opportunity to present.

I am Asian, in regards to race, and Chinese, if you go by ethnicity. I am American if you go by nationality. I am Christian in regards to religion, and Liberal, if you go by politics. I am female. I am Autistic.

None of these cultural descriptors are inherently good -- nor are any of them inherently bad. It is not an inherently good thing to be Asian or American or Christian, and it is not an inherently bad thing to be Chinese or Liberal or female. There may be aspects or consequences of my identity as an Asian or American or Christian that are advantageous, useful, beneficial, or pleasant; likewise, there may be aspects or consequences of my identity as a Chinese or Christian or female that are disadvantageous, useless, detrimental, or unpleasant. The converse statements are also true.

If this is true of these cultural labels, why is it correct to say that I am Asian, or that I am Chinese, or that I am American, or that I am Christian, or that I am Liberal, or that I am female, and for some reason incorrect to say that I am Autistic? Would I say that I have Asianness, or Chinese-ness, or that I have Americanness, or that I have Christianness, or that I have Liberalness, or that I have femaleness? Those statements are ridiculous. They are considered incorrect because these identifying adjectives are precisely that -- markers of my identity. Not one of them is the sole component of my identity, but they overlap and interact and form the foundation for who I am and how I exist in the world.

This is true of autism. “Autistic” is another marker of identity. It is not inherently good, nor is it inherently bad. There may be aspects or consequences of my identity as an Autistic that are advantageous, useful, beneficial, or pleasant, and there may be aspects or consequences of my identity as an Autistic that are disadvantangeous, useless, detrimental, or unpleasant. But I am Autistic. I am also Asian, Chinese, American, Christian, Liberal, and female.

These are not qualities or conditions that I have. They are part of who I am. Being Autistic does not subtract from my value, worth, and dignity as a person. Being Autistic does not diminish the other aspects of my identity. Being Autistic is not giving up on myself or limiting myself or surrendering to some debilitating monster or putting myself down. Being Autistic is like being anything else.

Some Autistic people choose to engage more actively with Autistic culture and community, and others would prefer not to involve themselves in the larger community. So? Some Christians choose to engage more actively with Christian culture and community, and others would prefer to avoid Christian-focused events or communities. Some Asians choose to engage more actively with Asian culture and community, and others do not.

It simply shows the importance assigned by an individual to the various aspects of that individual’s identity. But these factors remain equal as inherent parts of that individual’s identity regardless of the individual’s choice to tap more deeply into one or another of those aspects and not others.

Person-first language is a form of hypocrisy. Its strongest advocates are non-disabled parents and professionals, very well-meaning people who love their friends and family members and students deeply and who want to right by them by treating them as human beings. But if a fairly large number of us to whom this type of language refers find it objectionable, why are we told “Well I respect your opinion, but I think person-first language is more respectful.”

It’s nonsensical. While I do know that there are people on the autism spectrum or from other parts of the disability community who prefer person-first language, the vast majority of people whom I know are in agreement with my objections to its use and consequences, especially in terms of shaping and reflecting societal attitudes. (More has been written on that in my first argument.)

Why is it culturally appropriate and typical to accept race, religion, and nationality as markers of identity that ought to be designated with proper adjectives that (in English) precede the noun “individual” or “person” and not those that fall under the category that we call “ability?” Is it a reflection of a secret fear of the non-disabled of people who are not like them, or is it a reflection of the inhibiting fear of offending one of us? As most of us prefer to identify with proper-adjective language (disabled or Autistic), using this language is highly unlike to offend. Asking me, “So you have autism?” will almost always produce a wince and a cringe. An identity is not something that I have. It is who I am.

But I'm Not Ableist

2011-11-20T15:58:00.008-05:00

(Trigger warning -- Use of the r-word and quotes of potentially triggering statements.)

You say, "But I'm not ableist."

Ableism.

When I wrote a short story during which an Autistic girl was picked up from school by her Autistic uncle, and I was told, "That would never happen. No one would let a man with Asperger's pick up their daughter."

When I suggested that someone I knew might be Autistic, and then mentioned that he had a girlfriend, and I was told, "He can't really be on the spectrum; I don't believe that. He drives, has a girlfriend."

When an Autistic person offered an opinion on a medical issue and was told, "You should know that people with your condition can't and never will go into the medical field."

This is what ableism looks like.

"You don't look Autistic."

Because apparently Autistic people have to fit your preconceptions of what it means to "look Autistic." But we are each individuals and may or may not fit those preconceptions.

"But you can talk... You're not really Autistic."

Because apparently talking and being Autistic cannot go together. But some of us can talk and some us cannot, and some of us who can talk choose not to.

"I couldn't tell that you're Autistic."

Because apparently Autistic people can never pass for normal. But we have been conditioned by society -- your society -- to believe that it is our job to appear as non-Autistic as possible (and some of us have gotten quite good at passing.)

"But you seem normal though."

Because apparently the standard for humanity is normality. But what is normality? It's defined by the people in the room around you. And who would want to be "normal" anyway?

"But you're really smart."

Because apparently being Autistic and being intelligent cannot go together without being a savant. But a pair of studies(1,2) show that intelligence is consistently underestimated in Autistic people of all diagnoses and ages, and we already knew that many Autistic people have average or above average intelligence.

"You're just saying that as an excuse for poor social skills."

Because apparently it's not possible for me to actually have challenges in social situations that aren't simply rudeness or manipulating other people. But there is a vast difference between people who refuse to interact positively with others and people who cannot navigate the social world of non-Autistics.

This is what ableism looks like.

Ableism is when Autistic people are told that flapping or rocking in public looks bad and abnormal and is a behavior problem.

Ableism is when Autistic people are unable to pass job interviews because making eye contact and small talk is more important than demonstrating ability to do the job.

Ableism is when Autistic people are relegated to institutions because of a community's unwillingness to integrate disabled and differently-abled people into their neighborhood.

Ableism is when Autistic people cannot disclose their diagnosis without facing prejudice and bigotry -- such as accusations of "making excuses," being "socially retarded," or being spoken to in a "baby voice."

Ableism is when Autistic people are unable to participate in the policy-making process when decisions that affect Autistic people are made with full rights and consideration as the non-Autistic people present because we're deemed "not competent" or unable to speak about the needs of other Autistic people.

Ableism is when Autistic people who can speak or are adults are accused of diagnosing themselves over the internet as if we are truly incapable of understanding ourselves.

Ableism is when Autistic people who can speak are dismissed as self-advocates under the false impression that no non-speaking Autistic people can self-advocate. (They can, and many do.)

Ableism is when Autistic people are prevented from accessing fully inclusive classrooms on the basis of lacking the intellectual or emotional maturity to be present with non-disabled peers.

Ableism is when Autistic people are told by non-Autistic advocates and professionals what to call themselves or how to refer to their disability, even if in direct contradiction to their stated wishes. (3)

Ableism is when Autistic people are told to "get over" their sensory issues because the non-Autistic people around them aren't bothered by the same things, and so the Autistics shouldn't be either.

Ableism is when Autistic people are told that they can't participate in certain activities or groups or clubs or events because their presence could be disruptive to the non-Autistic people there.

Ableism is when Autistic people are presumed guilty when suspected of crimes because of different behavior, mannerisms, or speech -- or because of a small number of highly-publicized cases involving Autistic people charged with or convicted of crimes.

Ableism is when Autistic people who can't speak are presumed retarded, ineducable, and incapable of accomplishing anything meaningful in life.

Ableism is when Autistic people accompanied by an aide are not addressed directly, but spoken to "through" their aides as if they are unable to express themselves.

Ableism is when Autistic people are considered exceptional for doing things like writing, singing, or playing sports, when we are perfectly capable of many seemingly-normal activities.

Ableism is when Autistic people are not taken seriously as advocates for themselves or other Autistic people because of their disability.

This is what ableism looks like.

And still you say, "But I'm not ableist."

Where possible, I've uploaded PDF documents for viewing through Google with great appreciation to PLoS ONE.

(1) Dawson M, Soulières I, Gernsbacher M A, Mottron L (2007). The Level and Nature of Autistic Intelligence. Psychological Science, 18(8), 657-662.

(2) Soulières I, Dawson M, Gernsbacher MA, Mottron L (2011). The Level and Nature of Autistic Intelligence II: What about Asperger Syndrome? PLoS ONE, 6(9): e25372. doi:10.1371/journal.pone.0025372

(3) Sinclair, Jim. Why I dislike "person first" Language. 1999.

What's Wrong With Disability Awareness

2011-11-20T06:43:00.001-05:00

I joined Georgetown University's disability awareness club, DiversAbility, now in its second year, upon arriving at campus. During one of our previous meetings, one of the club's officers mentioned that we will be hosting an "Ability Lunch," which had been done last year, in which people sit at different tables and simulate different disabilities -- for example, wearing a blindfold to simulate blindness or having one’s arm tied behind one’s back to simulate inability to use a limb or lack of a limb -- while eating lunch. I immediately raised objection to the idea, and was told that the discussion following the lunch included criticism of the event.

If that is so, if the flaws in holding such an event are recognized, then why is this event held?

I am in very strong opposition to the idea of the Ability Lunch for the same reasons that I stood alongside the Autistic community in 2010 when a well-meaning individual decided to declare Nov 1. as “Communication Shutdown Day.” The idea behind Communication Shutdown Day was that non-Autistic people could experience the social isolation and communication difficulties that Autistic people often have by not accessing online social networks or websites for the entire day.

Beside the fact that the Internet has provided an incredible forum and means for Autistic people to communicate with one another about issues that affect our community in ways that we were unable to access prior to the widespread use of social media and e-mail, the idea of Communication Shutdown Day in no way reflects the reality of living as an Autistic person.

A non-Autistic person spending one day without using social media will not understand the inherent differences and difficulties we face in social communication with non-Autistic people, the majority of which occur offline and face to face. A non-Autistic person who spends one day without using social media is not experiencing Autistic life. Autism is more than social challenges. The Autistic experience includes an array of sensory and information processing differences -- some of which are disabling -- and these are programmed into our neurological systems from birth through death. You cannot simulate being Autistic by shutting down Facebook for a day.

The mere suggestion that this is a way for non-Autistics to empathize with Autistic people is absolutely ludicrous. It is lacking in empathy entirely. If you want to get into our shoes, you need to understand the reality of what it is like to live Autistic day to day for a lifetime, and that is not something that can be done by a one day “simulation” of not accessing social media.

Similarly, it is absolutely ridiculous, if not outright offensive, to think that a non-disabled person can simulate a disability for an hour or two and therefore understand what it is like to live as a disabled person. The idea is well-meaning, but well-meaning people often blunder and harm in their good intentions in the absence of context and greater understanding. No amount of “good intentions” will change the nature of this event.

It is a farce. It is a feel-good opportunity for some non-disabled people to pretend to be disabled for an hour so that they can go home and say, “I understand what it’s like to have a disability.”

It is the equivalent of a non-Catholic attending mass, expecting to come away from the experience with an understanding of what it means to be devoutly Catholic. It might be a nice or interesting or strange experience, but in absolutely no way will this non-Catholic individual have any grasp on what it means to be devoutly Catholic in one’s lifestyle after going to mass once.

None of the non-disabled people coming to the Ability Lunch will have any true grasp on what it means to live as a disabled person in our society because they are not disabled. The very idea or suggestion that this “Ability Lunch” will somehow create this type of “in their shoes” empathy is unfounded and untrue. It won’t. The only way to do that is to have actual dialogues with disabled people to share experiences, coming as peers and equals at the discussion table. To listen to the voices of disabled people discuss what being disabled means in their individual lives. To recognize agency and give respect. To understand that it is impossible for a non-disabled person to truly experience disability, and that it is impossible likewise for a disabled person to truly experience not being disabled. To recognize the limitations of any type of disability “simulation” and to host disability awareness events that do not marginalize, diminish, demean, reduce, and devalue the realities of the varied experiences of disabled people.

No pity. No fear. No patronizing.

Nothing about us without us!

Disability is a Social Construct: A Sociological Perspective on Autism and Disability

2011-11-01T23:26:00.002-04:00

An accessible audio recording of this post:

Disability is a Social Construct - Autistic Hoya by autistichoya

(Special Note: Today is Autistics Speaking Day. With the end of midterm examinations and the second annual Autistics Speaking Day, I’ve prepared a special article during a time that might otherwise have been occupied with some intense studying.)

Earlier this year, someone I knew told me about meeting a man who obtained very high levels of education (probably a doctorate) in a technical field and who is reputed as one of the top minds in the entire country in his field. He was sought by some of the most prestigious educational institutions in America. Instead, he chose to work for the government, for one of the agencies in the intelligence community. At forty-something years old, he lives with his mother, who drives him every day to work.

When I told my mother this story, and suggested that he might have been Autistic based on the facts that I know about him, she immediately shook her head and said, “That’s sad. His mother didn’t do the right thing for him. He should be able to live on his own and take care of himself, and take himself to work. That’s not a successful ending.”

“No it’s not,” I responded immediately. “You don’t have to be able to live independently to be happy or a contributing member of society.”

“But what’s going to happen when his mother passes away? Who’s going to take care of him then? He’s not going to have anywhere to go.”

That, to me, is the most significant problem, and it is a societal one.

Disability is a social construct. That may seem like a revolutionary idea, or perhaps the proud declaration of someone who would rather not use an “ugly” or “pejorative” word. But what that means is that the way that we understand disability is ingrained in our society’s attitude toward ability. When most people say or read “disability,” they understand that word to mean a person who is unable to fully participate in typical life activities because of a mental or physical impairment.

Our culture says that to be fully functional and able means that one should be able to attend a mainstream school, complete university or vocational training if desired, obtain housing, obtain and keep a steady job, and marry and support a family if desired -- all without significant outside support or assistance. While it is considered socially acceptable to speak to a college counselor while in high school, see a math tutor for algebra or calculus, and even depend on one’s parents for financial support through young adulthood (twenties or so), an individual is not considered fully able and functional if he or she is unable to do one or more of those activities without significant amounts of support from others.

By this definition, the definition propagated and permeated throughout the societies in which we live, we Autistic people are disabled. Some of us may be more disabled than others -- as some of us are more able to participate in life activities with less amounts of outside support, and others of us do now and will throughout their lives only be able to participate in some of those activities with significant amounts of outside support.

For the other Autistic folk reading this article, please understand that I am not classifying or differentiating “types” or Autistic people. I feel very strongly that you are either Autistic or not Autistic. I do not believe it is possible to make meaningful distinctions between types of Autistic people through terms like “severe” or “mild” or “high-functioning” or “low-functioning.” Those terms are not only demeaning and offensive, but also lack scientific validity. I do not think it is possible to be “mildly” Autistic.

Why is that? Autism is a bio-neurological developmental disability (and there’s that “disability” word again) defined by a certain set of characteristics -- differences in sensory processing, information processing, and communication. Those marked deviations from a typical neurological profile (or, in any case, most non-Autistic people) manifest themselves in a variety of ways -- some fairly positive, some fairly challenging, and others simply -- different. For us Autistics, autism affects and influences every aspect of our lives, throughout our lives. In short -- you either have this particular grouping of characteristics or you do not. You are Autistic or you are not Autistic.

Let me take a moment here to draw an analogy with religion. Of people who identify as religious (and one’s faith, or choice not to align with a particular faith, necessarily impacts all of one’s ideas and beliefs about everything else -- politics, ethics, and otherwise, informing and influencing all aspects of that person’s life), some are immediately recognizable as religious by glancing at them. You might see a man wearing a skullcap and yarmulke, or a woman wearing a hijab headscarf, or a man with a clerical collar -- and you would know immediately that that person is religious. In other cases, you might know a certain person fairly well, speak to him or her quite often, and never think about religion or whether the person is religious -- but that does not change the fact that that person belongs to a particular faith tradition or that that person’s beliefs about religion are an integral part of his or her identity and worldview (regardless of how deeply involved with “traditional” religious activities the individual may be.)

Similarly, some Autistic people may appear at first glance to be Autistic, based on common ideas of what it looks like or means to be Autistic, while others have become skilled, through life-experience or coaching, at “passing” for non-Autistic. Not all Autistic people are interested in Autistic culture (which, quite frankly, I think is tragic -- but a personal decision.) Not all Autistic people choose to identify themselves as Autistic -- and for a myriad of reasons, not least of which is the justified fear of discrimination or misunderstanding. When you live in a world where people think it is a compliment to tell you “But you seem normal,” and where you are under constant pressure to appear as non-Autistic as you can, that creates an environment where it is supremely uncomfortable to disclose that information.

And like people who all belong to the same faith, each Autistic person -- while sharing a common identity -- is an individual. We are not identical, and we each have our own individual strengths and weaknesses. Autistics are a diverse lot. Some of us speak, and some of us do not. Some of us have attended mainstream schools, and some of us have attended schools specifically for special education. Some of us have gone on to university, and some of us have not. Some of us can effectively advocate, and some of us have not yet learned how to advocate. Some of us can live independently, and some of us need intensive supported living services. Some of us have obtained jobs and worked toward careers in a competitive environment, and some of us struggle to find employment. We are not all alike. But we are all Autistic.

But what does this have to do with disability? Why do I use this word? Because it would be inaccurate, within the context of our society, to say that Autistic people are not disabled. It would also be inaccurate, within the context of our society, to say that no Autistic people are more or less disabled than other Autistic people. Within the context of our society, some Autistic people are more disabled than others, because of how we have come to define and understand ability.

I do not like the word disability. I do not think it should be used. I hope that over the coming generations, it will fall into disuse -- or at least, be redefined. If I could redefine “disability,” I would start with our definition of what it means to be fully functional and able. To be fully functional and able -- outside the context of our particular societal attitudes -- should mean possessing the ability to live a life that is meaningful and satisfactory for oneself, by one’s individual feelings, with the appropriate amounts of support where required to live that life. By that definition, almost no one would be disabled. Nearly every Autistic person falls into that definition -- and I only say “nearly” because I try to avoid absolutes. Notice that the definition that I have proposed does not say anything about independent living or activities of daily life. It is only in our society that “independent living” is a hallmark of being fully functional and able. I do not think that “independent living” has any correlation with the ability to live a meaningful life or to make meaningful contributions to society.

But in our society, I use the word disability. In fact, I use it quite often. And why is that? Because if I need to advocate on behalf of Autistics in order for us to receive needed services or supports, or for systemic changes to be made to benefit Autistics, I have to use the word disability to get attention, to be taken seriously, and to effect those changes.

I think this is a tragedy. I think it is a tragedy that while there are parts of the world -- usually rural, “undeveloped” (another word with such nuanced connotations behind it) areas -- where people who need significant amounts of outside support are welcomed and supported by the entire community, and where this is natural and normal, it is abnormal or exceptional in most of the “developed” world, and indeed, in the places where most people live. We look down on people who require significant support from people, especially non-family members. We pity them. Sometimes, we think of them as burdens to society because of the public funding that goes to support them. In these other parts of the world, in these isolated hamlets, these people are equal parts of the community that joyfully supports and encourages them instead of reluctantly giving to charity cases.

That is why I found my mother’s response to the story so problematic. It encapsulates, in only a few fell sentences, the attitude our society has developed toward ability and disability.

I am Autistic. For now, I am disabled.

Today, I am speaking.

Taking Notes: Hints and Tips for the Autistic College Student

2011-09-13T23:26:00.000-04:00

I have rarely, if ever, taken notes in my entire academic life -- throughout elementary and middle school, right through high school and walking across the platform for graduation, whether I was at a guest lecture at a local university of my own volition, listening to a sermon in church, at a conference, or sitting in tenth grade chemistry class. I found that whenever I wanted to take notes, I would attempt to copy verbatim everything the speaker was saying, which is impossible for almost anyone, even with a computer, except for CART providers using the special interface common to court reporters. (And even then, anyone who has ever witnessed a CART provider's input knows that such a document will be riddled with laughable mistakes that one cannot fix without pausing -- which would mean losing precious time as the speaker continued.)

Instead, in order to retain what I heard, I have relied almost exclusively on my visual-spatial learning style and visual thought process (akin to Temple Grandin's, although I'll note for the record that not all Autistics think in images.) During lectures, sermons, speeches, or classes, I drew all over my notebook, or the back of the program, or the back of a handout or syllabus. I usually drew pictures of characters from my novels or stories, often in various scenes from the same fictional settings. Sometimes, I would repeatedly draw the exact same character in the exact same outfit (an Autistic repetitive coping mechanism, perhaps?). But it didn't really matter what I drew, as long as I had a visual reference for whatever was being said. Thus, I would associate whatever I heard with whatever I saw on the paper in front of me, and attained such excellent recall that I rarely studied for tests, except to memorize formulas or specific dates.

Coming to college, although this is only my third week of classes, I quickly realized that it is possible to take notes in a way that doesn't involve a futile attempt to copy verbatim everything a professor says, and yet also allows an actual, literal reference to the course material.

When a professor is using a PowerPoint:

Copy dates from the PowerPoint.
Copy names from the PowerPoint.
Copy charts or diagrams from the PowerPoint.
If there are lists, copy those as well, but focus more on the other types of information listed above than blocks o' text from a PowerPoint slide.

Whether or not a professor is using a PowerPoint:

If he or she writes something on the board, write it down. It's important.
If he or she repeats something more than once, write it down. It's important.
If he or she gives a definition, write down the word or term and the definition.
If he or she makes a list, copy the list.

If you have a question or need a clarification made, ask the professor or one of the Teaching Assistants about it, either during the lecture or class, immediately afterward, or during the next office hours. You will never get the information otherwise. Write down anything that you are told in response to a question.

Studying for my first exam tomorrow, I'm glad I have finally learned some easy ways to jot down notes instead of failing at copying the lecture.

Self-Advocates: Parents Are Not (Always) Our Enemies

2011-08-20T16:56:00.000-04:00

After reading conversations in the comments on blog posts or news articles, or even on posts on social networking sites like Facebook and Twitter, it is very easy for self-advocates to assume that all (or at least most) non-Autistic parents of Autistic children are our enemies. After all, most people who want to cure Autism are parents; most people who claim that "high-functioning people with Asperger's" aren't really Autistic; most people who claim that all self-advocates are in fact "high-functioning people with Asperger's" (which isn't true); most people who want research to focus on curing Autistic children; and most people who loathe the word "Autistic" and much prefer "person with Autism..." Well, most (but certainly not all) of these people, or at least the most vocal among them, are the non-Autistic parents of Autistic children.

The vitriolic fights between self-advocates and parents can be found quite easily anywhere on the internet -- and occasionally, in person as well. There was, actually, a very nasty email exchange quite full of ad hominems and personal attacks about two weeks ago among some of the members of my subcommittee along those lines. (I did not add fuel to the fire, for the record.) Parents get furious with self-advocates for presuming to understand their children; self-advocates get furious with parents for completely misunderstanding the entire nature of Autism. Parents make us out to be the villains; self-advocates make out parents to be the villains.

This in mind, it never ceases to surprise and excite me when I actually encounter parents who agree with any or all of the issues most important to Autistic self-advocates. Last week, I had a wonderful conversation with the non-Autistic mother of a young Autistic son. Her son is non-speaking and has some difficult, destructive behaviors. According to her, he regressed with Applied Behavioral Analysis (ABA), but is doing very well with the TEACCH program.

This woman told me how she eschews the phrase "person with Autism." "My son does not have Autism," she said, "he is Autistic. Autism is a part of him. It's part of his personality. I love him the way he is. Other parents don't get it." She told me that she doesn't want to cure her son. "I'm so inspired by you -- by Autistic adults who I read on the internet. I'm fascinated by you. I wish other parents would understand that my son, their children, are going to grow up to be you, Lydia. They're going to grow up to be Ari [Ne'eman.]"

"Parents think, I got a good placement for my child, I don't want to rock the boat. No, sorry, I can't help you," she said to me. "But what happens to one child affects all of our children. We have to treat it like a civil rights issue." Now that piqued my interest, because the self-advocacy and neurodiversity movements treat our advocacy with the civil rights model as opposed to a medical model. It was strange and yet reassuring to hear this from a parent!

Not only is this woman not Autistic, but her son is what most people would call "low-functioning" or "severely Autistic." She fits the profile perfectly of so many parents who viciously attack the self-advocacy movement. Yet she shares in many of our goals and beliefs. So yes, the mythical parent allies of self-advocates do in fact exist. Let's remember this before accusing all parents of being our enemies.

Legislative Update: Autism Training Bill

2011-08-12T12:22:00.000-04:00

A conversation with staff in Senator Jim Timilty's office two weeks ago revealed that the House Co-Chair, Representative Harold Naughton, has been out of the country on active duty throughout July (and perhaps in June as well.) At least, that's the impression I got from the conversation, which also noted that several Members are missing at any given time while serving in the armed forces. I was told that action probably will not happen until sometime in September, so we are keeping are fingers crossed--and those letters and calls going--until then.

Do feel free to write to your Massachusetts State Senators and Representatives urging support for S-1197 and H-2909. Even if your Senator or Representative doesn't serve on the committee, it can't hurt to spread visibility and awareness of the legislation and the problems it seeks to rectify--and to gain support for a potential vote later. Letters from Massachusetts residents are preferred, but out of state letters can't hurt either. During August, the Legislature is in a general recess, and will only meet informally in session. Little happens this month, but back to full speed next month!

The Significance of Semantics: Person-First Language: Why It Matters

2011-08-04T23:51:00.006-04:00

An accessible audio recording of this article:

The Significance of Semantics - Autistic Hoya by autistichoya

At the Adult Services Subcommittee's final meeting last Wednesday, much to do was made about semantic disagreements -- "ASD individual" versus "individual with ASD," and of course, the dreaded "person with autism" or "person who has autism" versus "autistic person." These issues of semantics are hot button issues, and rightfully so.

Words and language are powerful tools by which an individual can express ideas, whether abstract, actionable, or concrete. As a writer and editor, I know firsthand that language and the meanings we attach to words very much impact, influence, develop, and change the attitudes that we have toward the subjects of discussion. That is why people are easily insulted or upset by word choices. Changing a phrase -- even if it holds the same literal meaning -- alters the subtle connotations and nuances of the speech, and communicates a different meaning and context than the original phrasing.

In the autism community, many self-advocates and their allies prefer terminology such as "Autistic," "Autistic person," or "Autistic individual" because we understand autism as an inherent part of an individual's identity -- the same way one refers to "Muslims," "African-Americans," "Lesbian/Gay/Bisexual/Transgender/Queer," "Chinese," "gifted," "athletic," or "Jewish." On the other hand, many parents of Autistic people and professionals who work with Autistic people prefer terminology such as "person with autism," "people with autism," or "individual with ASD" because they do not consider autism to be part of an individual's identity and do not want their children to be identified or referred to as "Autistic." They want "person-first language," that puts "person" before any identifier such as "autism," in order to emphasize the humanity of their children.

Yet, while I have been familiar with this rift among the autism community over the use of "person with autism" as opposed to "Autistic person," I hadn't fully explored the diversity of perspectives on the topic until now.

During last Wednesday's meeting, one subcommittee member, who I believe is the parent of an Autistic child, and an Autistic self-advocate expressed disagreement over the terms. Feedback from one of our members suggested changing "ASD individual" in our report to "individual with ASD." The Autistic self-advocate sitting beside me, who also has an Autistic brother, voiced her objection to use of the term. "I disagree," she said as the suggestion was read aloud. "I'm not a person with autism; I am Autistic."

Immediately, a mother sitting next to her responded, "I come from a time where that word, 'autistic,' had -- still has -- a negative meaning. It's offensive. When someone refers to my son as 'the autistic,' I cringe at that word; I get ready to defend him."

After our meeting, I took the time to explore a wealth of opinions online about the use of person-first language -- from those who support it and those who oppose it. The theory behind person-first language is that it puts the person before the disability or the condition, and emphasizes the value and worth of the individual by recognizing them as a person instead of a condition. And that's a great idea. In fact, when discussing specific people, I have never once heard anyone -- self-advocate, parent, teacher, or otherwise -- refer to a person as anything except by his or her name. I can't think of any teacher -- at least any decent one -- who would refer to a student as "that Autistic kid," or "that kid with autism." And I certainly can't think of any parent who wouldn't refer to his or her child by name.

But why are we self-advocates so opposed to this terminology? Aren't we all about de-emphasizing and correcting inaccurate, misleading, and harmful stereotypes and attitudes? Right? From that other perspective, you would think we would support the use of person-first language, because we want to be seen as people with equal rights, value, and worth to non-Autistic people. But we don't. Because when people say "person with autism," it does have an attitudinal nuance. It suggests that the person can be separated from autism, which simply isn't true. It is impossible to separate a person from autism, just as it is impossible to separate a person from the color of his or her skin.

One argument I encountered in one of the more cogently-written papers in favor of person-first language expostulates that because cancer patients are referred to as "people with cancer" or "people who have cancer," as opposed to "cancerous people," the same principle should be used with autism. There are some fundamental flaws with this analogy, however.

Cancer is a disease that ultimately kills if not treated or put into long-term remission. There is absolutely nothing positive, edifying, or meaningful about cancer. Cancer is not a part of a person's identity or the way in which an individual experiences and understands the world around him or her. It is not all-pervasive.

Autism, however, is not a disease. It is a neurological, developmental condition; it is considered a disorder, and it is disabling in many and varied ways. It is lifelong. It does not harm or kill of its own accord. It is an edifying and meaningful component of a person's identity, and it defines the ways in which an individual experiences and understands the world around him or her. It is all-pervasive.

What I found most interesting in reading this selection of articles and blog posts is that many of the same arguments are used for both positions, but with separate sides, naturally, coming to very divergent and contradictory conclusions.

Firstly, I saw in at least two articles in favor of using "person with autism" that the authors strongly oppose language referring to disabilities like "suffers from," (i.e. "Alan suffers from Asperger's syndrome;" "Joey, an autism sufferer;" etc.) which has traditionally been a talking point of self-advocates as well. I do understand that not everyone who supports the use of terminology "person with autism" would disagree with language like "suffers from," but it is still interesting that there are those who do. It suggests a fundamental shared value -- that people with different neurological conditions are not "suffering" because of their difference or disability.

Secondly, as alluded earlier, those on both sides want to emphasize the value and worth of the person. Person-first language advocates believe the best way to do this is through literally putting the noun identifying "person" before any other identifiers. (As noted in one of the other articles opposing person-first language, however, English is a language that puts adjectives before nouns, whereas there are multiple languages that always place adjectives after nouns. In Spanish, for example, "person with autism" is "persona con autismo," while "Autistic person" becomes "persona autística." In both cases, autism/Autistic follows the noun.) Person-first language opponents believe the best way to do this is by recognizing and edifying the person's identity as an Autistic person as opposed to shunting an essential part of the person's identity to the side in favor of political correctness.

It is impossible to affirm the value and worth of an Autistic person without recognizing his or her identity as an Autistic person. Referring to me as "a person with autism," or "an individual with ASD" demeans who I am because it denies who I am.

Lastly, what is most interesting indeed is the shared expressed sentiments that using or not using person-first language is necessary to change and shift societal attitudes toward Autistic people. Returning to the premise of this article, this is the sole reason why this debate continues to be argued and why many people on both sides regularly emerge upset and feel personally attacked. Language does play a large role in shaping societal attitudes.

But let's think about what we are doing when we use these terms. When we say "person with autism," we say that it is unfortunate and an accident that a person is Autistic. We affirm that the person has value and worth, and that autism is entirely separate from what gives him or her value and worth. In fact, we are saying that autism is detrimental to value and worth as a person, which is why we separate the condition with the word "with" or "has." Ultimately, what we are saying when we say "person with autism" is that the person would be better off if not Autistic, and that it would have been better if he or she had been born typical. We suppress the individual's identity as an Autistic person because we are saying that autism is something inherently bad like a disease.

Yet, when we say "Autistic person," we recognize, affirm, and validate an individual's identity as an Autistic person. We recognize the value and worth of that individual as an Autistic person -- that being Autistic is not a condition absolutely irreconcilable with regarding people as inherently valuable and worth something. We affirm the individual's potential to grow and mature, to overcome challenges and disability, and to live a meaningful life as an Autistic. Ultimately, we are accepting that the individual is different from non-Autistic people--and that that's not a tragedy, and we are showing that we are not afraid or ashamed to recognize that difference.

That's why, when I read a few articles scoffing entirely at the debate, and dismissing it as ultimately irrelevant (insisting that each person should use the terminology he or she prefers and to ignore what other people say or write), I was concerned. The question of person-first language is definitely important and cannot be disregarded. The way we use language affects those around us -- in our immediate communities and in society at large. Trends of language have the power to transform ideas and attitudes. To dismiss this as "a silly semantics argument" denies the power of language.

What does, however, disturb me is the vitriol during debates about this (and similar) topics in the autism community. While it is, as repeatedly emphasized, an important debate with huge ramifications both short-term and long-term, hurling ad hominem insults, making baseless accusations, and shouting over tables (or computer screens) at the people on the other side ultimately demeans both you and them. It shows great immaturity, inability to civilly and peaceably discuss important topics, and insensitivity to the personal experiences vested in each of us with a stake in this debate. Having strong opinions on a topic and being able to have a respectful discussion with someone else are not mutually exclusive.

So what can we do moving forward? Or, more importantly, what should we do? To those of you who use "person with autism," I will always respect your Constitutional right to express yourself however you like, but I urge you to reconsider the consequences of using such language. To those of you who use "Autistic person," I urge you to consistently use such phrasing everywhere possible, whenever discussing autism and issues that affect Autistic people, and to develop coherent, rational explanations for why you prefer this terminology, so that you can engage in such mutually respectful and civil exchanges with others.

That, actually, goes for everyone. If we ever want to accomplish anything as a community, as a movement, or as advocates, we cannot allow ourselves to be constantly divided by infighting and vicious bullying -- and yes, that occurs from all sides of these debates, not just one. It is imperative that we learn to engage critically and respectfully with one another, and to value each individual's voice and feelings as equally important. Otherwise, we'll become even more dysfunctional than my subcommittee has been in recent months.

You can read the second part of this argument at “Identity and Hypocrisy: A Second Argument Against Person-First Language,” which was published in November 2011.

Interested in other perspectives? Here are some links to feed your curiosity.

(A note: I believe fully in the freedom of expression and belief, and do not believe in censorship of people with whom I disagree. Thus, I have no policy about excluding or ignoring any particular individual, organization, or idea when linking offsite. Links offsite are not to be construed as endorsement or acceptance of the ideas and opinions expressed therein. If I have wrongfully classified your article [and I did read them all, but may have misread], please let me know and I'll move it to the correct header.)

People who use "autistic" or "autistic person":

- Why I dislike "person first" language by Jim Sinclair, founder of Autism Network International (ANI) *full text

- 'Autistic' or 'person with autism'? by Jean Winegardner

- Autistic vs Person With Autism by Karin

- Autism-first Language by Elesia Ashkenazy, National Advisory Council of the Autism NOW Center

- Autism as a lifestyle as seen through the eyes of an autistic adult by Kassiane Sibley

- I don't have autism. I am autistic. by Kassiane Sibley (new!)

- On Language by Gordon Darroch

- Climb off your high horse already by Rob Gorski

- Autism First (Again) by Jeff Gitchel (new!)

- People-First Language by Twitchy Woman (new!)

- Reply to a Disgruntled Reader by Leigh Merryday (new!)

People who use "person with autism" or "person who has autism":

- People First Language: What it is and why it matters by the Arc of Anchorage

- Person First Language

- Put me first: The importance of person-first language by Mary Tobin, M.Ed.

- Person First Language by Katie Nelson

- An Autism Parent on Kathie Snow's People First Language by Julie L.

- People First Language by Kathie Snow (PDF)

- Olmsted on Autism: "Retards" and "Autistics" by Dan Olmsted

- The Power of Language by Michele Guzmán of the University of Texas Hogg Foundation for Mental Health (new!) This was written in direct response to the Autistic Hoya article.

People who use both interchangeably:

- "Has Autism" versus "Is Autistic"; A muddled debate from Autism and Oughtisms

- The Last Word on "Person First" Language by Stuart Duncan

- Is It "Autistic Person" or "Person with Autism"? by Stuart Duncan

- Autistic or Person With Autism? by Susan Senator (new!)

My Thoughts to the Adult Services Subcommittee

2011-07-27T22:52:00.000-04:00

I took liberal inspiration from ASAN Greater Boston's June 25 Focus Group on Autism and Ethics and the feedback and suggestions received there, as well as Winchester-based advocate Catherine Boyle's shared values statement, a collaborative project among various members of the autism community to find shared values in the midst of the contention and animosity that often surround important issues. I did not, however, refer to any documents from the focus group, or Catherine's document, when writing the following, and any plagiarism of phrases is incidental and unintentional, and duly credited to potential original authors here.

- Autistic people have the right to be treated with respect, presumed competent, included in discussions about policies or practices that affect them (both with public and private organizations and decision-making bodies), and considered valuable members of society.

- Autistic people, especially those who do not speak or have limited speech abilities, have the right to receive access to and support in learning how to use alternative means of communication other than speech, such as American Sign Language, picture boards, keyboarding, or other augmentative/alternative communication devices.

- Autistic people have the right to receive services and supports that they need or request, or that family members or guardians request on their behalf. They should never be excluded from or denied eligibity for receiving services or supports based on IQ, co-occurring conditions such as mental illness or other disabilities, or age. Autistic people have this right on the basis of autism alone.

- Autistic people have the right to be included in discussions or meetings that affect them personally, including IEP meetings while in the public school system. They have an important and valuable voice in shaping their plan of support, services, or interventions.

- Autistic people have the right to access to healthcare services with appropriate accommodations throughout the process of seeking medical services, communicating with medical professionals, and making informed decisions about medical procedures.

- Autistic people have the right to receive appropriate and necessary supported living services, as well as any necessary financial assistance in obtaining appropriate housing.

- Autistic people have the right to gainful and meaningful employment commensurate with their abilities, skills, and interests; appropriate supported employment services and resources throughout the hiring process and on the job; and access to training about self-advocacy skills in the workplace. Wherever possible, employers and managers should be provided with education about autism and other disabilities so that they can best accommodate their employees.

- Autistic people have the right to access community resources where they live, including appropriate and affordable transportation options, local programs or events, community education programs, and autism and disability organizations.

- Autistic people in the public school system, in private schools, or in post-secondary institutions have the right to appropriate and necessary supports and services required for academic functioning, adaptive functioning, and social functioning. They have the right to an appropriate, individualized transition plan from the school system to adulthood, and to be included in discussions shaping these plans for support.

- Autistic people living in residential institutions have the right to appropriate advocacy resources, including access to training about self-advocacy skills; appropriate and necessary services and supports, including positive behavioral supports for maladaptive behaviors; legal counsel and recourse in regards to guardianship and its terms; and appropriate assessments by qualified professionals with expertise in autism and developmental disabilities.

- Autistic people interacting with first responders, law enforcement, the courts, or other government agencies have the right to an advocate with expertise on autism and developmental disabilities, appropriate accommodations for communication and interaction wherever possible, and appropriate assessments by qualified professionals with expertise in autism and developmental disabilities. First responders, law enforcement officers, court officials, and corrections officers should be trained in recognizing characteristics of autism, appropriate means of communication and interaction with Autistic people, and how to accommodate sensory processing challenges on a situational basis.

Level III Aversives and the Judge Rotenberg Center

2011-07-22T22:20:00.000-04:00

Today, I testified at the Massachusetts Department of Developmental Services statutorily mandated hearing on proposed amendments to regulations regarding minimum standards for the treatment of people with developmental disabilities, including intellectual/cognitive disabilities. The marathon hearing was held at the McCormack Building in downtown Boston, beside the State House, and went all the way from ten in the morning until four in the afternoon. Commissioner Elin Howe of the DDS presided over the hearing, and seemed to be very pleased to see me; Commissioner Howe is one of the members of the Autism Commission, and I have attended almost all of their meetings. (I believe she has also attended some of the Adult Services Subcommittee meetings.)

When I arrived, there were already over twenty people present, if not much closer to thirty, and the numbers grew by the minute, with more and more people crowding into the room I usually associate with the Autism Commission meetings. Outside the conference room, Commissioner Howe greeted me and asked me whether I intended to testify. "I've been thinking about it all week, but I haven't prepared anything," I said.

"That's fine," said Commissioner Howe, directing me to a table between the two entrances to the room, "but you can sign in over there, and you can always change your mind later."

"Okay, thanks," I said, and headed to the table, where I gave the ladies my name. I noticed that there were already several names listed on the sheets, although I didn't know at the time that out of the well over eighty people who attended, maybe around forty, perhaps a bit closer to fifty, would give oral testimony.

After signing in on the sheet, I went inside and took a seat to the right side of the room, between one of the CART accessible communication providers and one of the sign language interpreters. I sat quietly, eating my croissant from the Dunkin Donuts near the State House, careful not to let crumbs all over my suit or the floor.

When Commissioner Howe gave her opening remarks, she introduced the purpose of the hearing and described the proposed amendments. The proposed amendments would ban the use of Level III aversives, which include pinching, hitting, deprivation of food, and electric shocks. (Nevertheless, it does not prohibit the use of these aversive interventions for students who will have had an existing court-approved intervention plan including Level III aversives by 1 September 2011.) This was the second of two hearings. (The first was on Wednesday, and had been held in Worcester.)

Immediately following her remarks, she announced that attendees who had indicated they wished to testify would be called in order listed on the sign-in sheets. The first person to give testimony was Henry Clark, a lawyer representing the parents association of the Judge Rotenberg Center, a residential and day institution for the developmentally disabled and behaviorally challenged in Canton, Massachusetts. The JRC, in fact, is at the heart of the matter. The JRC has been open since at least 1977, where it was originally called the Behavior Research Institute until a 1986 ruling by a Judge Rotenberg allowing the use of electrical shock as a therapy. Afterward, it was renamed in honor of this judge.

For well over twenty years, individual legislators in the Massachusetts Legislature have tried to pass bills to completely ban aversive shock therapy; however, each time, they are met with the millions of dollars the JRC has in lawyers and lobbying power, and, the sweeping majority of legislators knowing little about psychology or developmentally disabled people, the affected "expertise" of the employees and staff of the JRC. Intimidated by the endless train of JRC staff and the parents of JRC students, the legislature has repeatedly failed to pass these bills. More recently, the JRC has gained a powerful ally in Representative Jeffrey Sánchez, whose nephew is an Autistic young man in his twenties with severe maladaptive behavioral challenges as well as severe spatial agrosia (inability to recognize his own body's location in space and its proximity to other objects and people.) Sánchez is an ardent, absolute supporter of the JRC who refuses to hear anyone who even partially deviates from his opinion that nothing should be done to restrict or regulate further the use of aversives.

Starting with Senator Brian Joyce's bills filed in the 2009-2010 legislative session that would compromise on the issue of aversives (establishing stricter external oversight and regulations of the use of the type of aversive shock therapy that the JRC uses, as well as its alleged deprivation of food [up to three-quarters of daily nutrition] and forcing inmates to engage in the behaviors for which they are then punished), it seemed that such a compromise might actually make progress in the legislature. It did in fact progress beyond any previous proposed ban before dying in the House Ways and Means Committee, arguably the most powerful of any of the legislative committees. (Any bill requiring appropriation of funds must be reported favorably by House Ways and Means.)

Senator Joyce's bills were re-filed in the current (2011-2012) legislative session as Senate Bills 49, 50, and 51, along with Senator Tom Sannicandro's proposed complete ban on these types of aversives as House Bill 77. These bills are scheduled for a hearing at the State House on this coming Tuesday, and based on the propagandizing evident at today's regulatory hearing, the JRC will appear in full force, shepherding dozens of staff members before the Joint Committee on Children, Families, and Persons with Disabilities to do what they've always been successful in doing -- intimidate the legislature into complying with their agenda. Again.

Mr. Clark's testimony would mirror the testimony of the close to thirty-something (if not more) JRC administrators and other employees who appeared today, and the two or three parents of JRC inmates. He and his cohorts (some of whom rather amusingly read prepared remarks referencing the four pieces of proposed legislation, which were not the topic of today's hearing [two entirely different parts of government]) made several arguments, all of which can be refuted by facts and evidence:

Firstly, the JRC supporters argued that level III aversives, such as their GED skin-shock device, can be "a life-saving intervention" in the cases of individuals with maladaptive behavioral problems like severe head-banging, skin-picking, hitting or punching themselves, biting others, spitting at others, or attacking others. Perhaps in a true emergency, when used solely as a temporary measure, in the most severe cases of self-injurious or destructive behavior that threatens imminent, life-threatening harm to self or others, such aversives like electric shocks may have some level of efficacy. If so, why should these people be opposed to allowing such interventions, under the strictest possible supervision and regulation?

The Department of Developmental Services is statutorily charged with upholding professional standards and establishing policies to protect some of the most vulnerable, at-risk people in the Commonwealth -- people with intellectual/cognitive or developmental disabilities. In that capacity, it must protect the rights of disabled people, including the rights against inhumane, cruel, or abusive treatment, and the right to as much self-direction in any intervention or support planning as is possible. If the DDS is also supposed to ensure that its population is receiving appropriate and necessary services and supports, it has a moral and legal responsibility to ensure the wellbeing and dignity of these people is protected as well as a responsibility to create regulations applicable both to state agencies and private providers, like the JRC, to this end. The purpose of doing that is to promote improving the quality of life for disabled people -- by including them inasmuch as possible in the process, and by preventing potential opportunities for exploitation, abuse, neglect, or well-intentioned harm.

The proposed regulations by the DDS allow individuals who currently receive court-approved level III aversives to continue to receive that treatment. In that respect, the JRC will not be prevented from applying the GED to the inmates whom are already subjected to it. It does, however, prospectively ban any future approval of level III aversives. You would think that this would allow the JRC to provide for alternative means of behavioral intervention and support and to seek alternative remedies; however, the JRC's cronies make another fallacious argument in response to this speculation.

The JRC's second wrong argument is that because positive behavioral interventions failed with these individuals, the only possibly effective alternative to level III aversives is heavy dosages of psychotropic medications that will result in disabled individuals being in "a catatonic state," as one of its staff members described in oral testimony today. This is not true. Despite the JRC's efforts to paint opponents of level III aversives as promoters of overmedication, many people who ardently -- and rightfully -- oppose the use of these kinds of aversives do not support the arbitrary and ineffective prescription of psychiatric medications to any or all developmentally or intellectually/cognitively disabled people. For some people, medications may be effective in the long-term and in the short-term; for others, such medications may be effective and necessary as a temporary short-term measure; and for still others, these medications may be unnecessary and should be not prescribed.

There are other institutions that care for individuals with the most severe, self-injurious or destructive behaviors without using chemical restraints or shock aversive therapy, and whose residents have good outcomes. The JRC does not provide transitional planning for its inmates to prepare for leaving the JRC and returning to the community. Instead, it advocates that its inmates belong at the JRC and must be given shock aversive therapy for the rest of their lives. There is a silent threat that if the JRC is ever forced to close its doors, its inmates will be returned to their parents' doorsteps without any behavioral supports and without other options.

This is entirely unfounded and untrue.

We know that aversives, consistent with the theory of Pavlovian conditioning, address only the actual maladaptive behaviors. They do not address the root causes of why these individuals engage in these harmful behaviors. Take a weed, for instance. If you pull a weed's leaves, the roots remain. The weed may appear to be gone for awhile, but check back in a few days or weeks, and voila! It's back. If you don't take the time to search for the roots and remove them, you will not kill the weed. Likewise, if you do not address the causes of maladaptive behavior -- sensory overload, inability to communicate, etcetera. -- you do not address the real problem. It's the tip of the iceberg, so to speak. Aversives cannot do that. Aversives cannot remove offending sensory stimuli, and aversives cannot provide people with a means of expressive communication, be that verbalizing speech or otherwise. All aversives can do is induce fear and pain in a person who may or may not be able to communicate that terror.

We also know from psychology that an aversive, once removed, will cease to have its effect. Given sufficient time, the mental association of the aversive with the undesirable behavior will fade, and the frequency of the undesirable behavior will actually return. This alone should be enough to refute the arguments in favor of the efficacy of aversive therapy. As a long term measure, it has no effect and remains a band-aid over a bullet wound at best. At best.

Thirdly, Mr. Clark argued that were the DDS to implement these new amendments to its regulations regarding aversives, the DDS would deprive the families of disabled people of their civil rights. Yes, that's right. Clark said "civil rights." Excuse me, but are we back in the 1950s again, or perhaps earlier, the 1880s, where disabled people only exist as extensions of their families, and where their parents or siblings alone have the right to speak for them, putting words in their mouths about their wants and needs? Oh that's right. As another JRC employee testified today, "Adopting these regulations would be a step backward into the Dark Ages." Wrong again. If the DDS does not implement these regulations, it will be a civil rights violation. It will be a violation of the civil rights of every disabled person in Massachusetts.

According to Clark, whenever the JRC or an individual's parents wish to include level III aversives in a behavioral intervention plan, an adversarial hearing is held in which a judge makes the determination whether or not to permit level III aversives. Aside from the obvious accusations of ties between the court that makes those decisions and the JRC itself, Clark argues that the civil rights violation would be violating the rights of the parents to decide for their children. Actually, our courts have upheld the rights of parents to make decisions for their children without state intervention except when there is a compelling interest on the part of the State to act in the interest of the child's benefit, such as in cases of abuse. More recently, in 2009, Minnesota Judge John Rodenberg (whose name, ironically, is etymologically related to that of Judge Rotenberg for whom the JRC is named) ruled that thirteen year old Daniel Hauser's parents could not choose to deny their son necessary chemotherapy in favor of alternative treatments; Daniel was provided with child protective services.

Whenever a child's rights are in danger, and in particular, whenever a disabled child's rights are in danger (or a disabled adult's rights!), our government does have a moral and legal obligation to prevent the infringement of that individual's rights. All people have certain rights, including the right to be free from fear of inhumane or cruel treatment. You would think that our most vulnerable citizens would be protected by the government, if anyone. But instead, what has happened over the last few decades is an appalling example of bowing obsequiously to the special interests of the JRC (and the JRC alone -- as it is the only institution in the entire country that uses electric shock aversives.) If the government does not intervene to protect these essential rights, they allow for the rights of any disabled person to be trumped by the agendas of others. Disabled people have civil rights too, and those rights must be not merely recognized and paid lip service, but must also be upheld and protected.

I made these points during my brief testimony, emphasizing the egregious civil rights violations against disabled people by the continued use of shock aversives and other level III aversives, in direct contradiction (or perhaps subversion of) to Clark's argument.

That was around eleven in the morning. I was one of the first ten people to give testimony.

By the time two in the afternoon rolled around, the vast majority of people giving testimony were staff from the JRC. I couldn't help but wonder at one point who was watching the JRC's inmates if their entire staff were at this hearing. I was told by another attendee that Wednesday's hearing had consisted of three-fourths of JRC staff testifying. It seemed like a similar ratio today, maybe a little closer to two-thirds than three-fourths. A few self-advocates spoke, as did a few parents of disabled children who have had such self-injurious and destructive behaviors, but who sought alternative interventions to aversives that were ultimately successful. Stephen Schwartz, a lawyer representing some parents and former inmates of the JRC, also gave testimony in support of the proposed amendments to the regulations. He noted later that he had, early in his career, mistakenly recommended that a young man be sent to the JRC and receive shock aversives; however, Mr. Schwartz also shared that one parent whom he represents wanted the child removed from the JRC, and the JRC sought an injunction preventing the parent from doing so. So much for the civil rights of parents in making decisions, Mr. Clark.

One of the clinicians for the JRC almost broke down during her testimony. "We are called monsters," she said, speaking of herself and other JRC clinicians. "We go places and there are people screaming at us, swearing at us. They throw things at us. We go to conferences and we are called monsters." Well, however wrong it is for JRC opponents to scream and swear at the JRC's staff (and it certainly is wrong for anyone to do that to anyone else, no matter what they believe or do), if you are willing, under the guise of doing good, and when there is scientific and empirical evidence that supports the use of non-painful interventions to reduce and eliminate self-injurious and destructive behaviors, to subject disabled people to ELECTRICAL SHOCKS, you are a monster.

Friendship

2011-07-20T23:13:00.000-04:00

In response to a fellow Autistic friend's status on Facebook about the meaning of "friend" or "friendship," I shared my litmus test for friendship. Why do I have such a litmus test? (And you can read it below.) Because I like order, visual and explicit means of understanding abstract concepts, and because there are infinite misunderstands of friends and friendships in the world today.

With the advent of social media like Facebook, MySpace, Twitter, Gather, and such sites, "adding friends" or "friending" complete strangers has become a normal practice. Probably about 80% or more of my currently 700-odd Facebook "friends" have at least 300 "friends" on their accounts. But about 95% of these people aren't really friends. Why? Because there is no empathetic, trusting, and accepting relationship on the deep, emotional level with the vast majority of them. And yes, we Autistics are not only capable of empathy, but also of having varied emotions, including mutual and reciprocal ones.

In fact, let's take a look at the Iberian Spanish language to help us understand why this is so important. The word "friend" is translated to "amigo" (or "amiga," in the case of a female subject), from the noun "amistad," meaning friendship. It ultimately derives from the Late Latin noun "amicus," meaning a friend or an ally, which itself derives from the Latin verb "amare," which means "to love." Thus, a friend is someone whom you love. (Clearly, this is not meant in the "romantic" or "sexual" type of love, but more in line with the Greek concept of "agape," or complete, selfless love that takes its form in actions.)

On the other hand, there is the word "conocido," (or "conocida," if female) which is the participle form of the verb "conocer." As any good Spanish instructor will teach you, conocer, defined in the dictionary as "to know," is a different verb with highly distinct meanings from "saber," which also means "to know." Conocer is the kind of "by heart" knowledge, or knowledge by way of familiarity (a word that is related to the English "family"), whereas saber is knowledge in terms of cold, hard facts -- where someone or something is, when someone was born, when something happened, what something costs to buy. Used in the simple past tense (the preterite, for grammarians out there), conocer will be translated as "met" or "became acquainted with" in reference to meeting another person. Conocido, conocer's participle, can be used in a compound verb or as a noun. As a noun, it is usually translated as "acquaintance." A strict, literal translation, based on the preterite use of the verb and its normal meaning, would be "one with whom one is familiar."

You don't know a conocido half as well as you know an amigo. You may know this person by name (or face, if not face-blind) or hair color or place where he or she works or goes to class, but you don't know anything about this person's past, personal life, fears, hopes, or dreams. You might as well be reading a police wanted poster; you'd get more information out of such a document than you would from mere conocimiento (the abstract noun formed from the same verb), or acquaintanceship.

It's very easy for people today, Autistic or not, to misunderstand friendship. 95% of your Facebook friends are not true friends; they are conocidos, known only by some shared attribute. Maybe you play on the same sports team, go to the same art class, see each other in the hallway at school or church or temple or masjid, or live on the same block. But how often do you actually talk to these people? Do you really care about their lives, their interests, their passions? Do you even know their most ardent desires? Doubtful.

Friendship is not based on clicking a button that says "Confirm Friend Request."

Nor, however, is it based on that mother of all misconceptions: "You have so much in common; you'll be great friends!" No, actually, having things in common (even, and sometimes especially, some of your most important attributes like religious and political views) does not automatically mean the acquaintanceship between two people is automatically conducive to actual friendship. There are plenty of people with whom I have much in common -- interests, some goals, beliefs about certain things -- whom I dislike entirely or with whom I know I will never be close friends (even if I don't dislike them.) And of my close friends, we don't often share our interests, and sometimes not even (gasp) our religious or political views. My closest friends include a Conservative Jew, a Muslim, and a confirmed Atheist. I'm a very observant Christian. My friends' interests or passions include marine biology, theater, and the Middle Ages, when I have casual to no interest in any of those pursuits. Of my close friends, only half regularly read my writings, and a few have rarely, if ever, read any of my fiction (which is near and dear to my heart.)

At the same time, of my closest friends, a few are Christian, many share most of my political views, and a few share interests of mine like interfaith dialogue, autism, and creative writing. So what does this mean about common interests? They can add to a friendship, or alter its flavor. But they are not the bones of the friendship, or its necessary requirements for existence.

I define a friend by the following litmus test:

1.) This person genuinely cares about you and your well-being, physical, emotional, and mental.

2.) This person accepts you for who you are, and does not criticize any aspect of your identity, or any of your beliefs or characteristics, or seek to change or alter your identity in any way. More than accepting you, this person encourages you to reach your full potential, and celebrates your uniqueness.

3.) This person is there for you when you are depressed, angry, hurt, offended, vilified, or otherwise in a bad situation. This person will actually provide emotional and practical support whenever needed, without complaint, and will do it out of love (not the romantic kind.)

4.) This person trusts you, and you trust them. That doesn't mean social security number and bank PIN, but it does mean an openness and a willingness to share and discuss matters like personal feelings, family situations, workplace gaffes, and yes, politics and religion.

5.) This person does not judge you on the basis of your political (i.e. liberal vs. conservative), religious (i.e. a theist and an atheist), or philosophical (i.e. a virtue ethicist vs. a utilitarian or a deontologist) beliefs. They may disagree, but (see 4) they will be willing to openly discuss the disagreement mutually respectfully, and will (see 2) respect your beliefs without mocking them.

These items can include common interests. They can include people who are younger or older than you as well as people who are your peers in age. They can include people who live close to you or those who live far away from you. But the most important element in this kind of relationship is that agape love, from which springs the mutual trust, encouragement, and acceptance. And those are the qualities that people need to look for in a friend. If you find one friend who passes that litmus test, you are fortunate indeed.

Study: Do Sheltered Workshops Enhance Employment Outcomes for Adults With Autism Spectrum Disorder?

2011-07-20T16:58:00.000-04:00

Published in May, a study entitled Do Sheltered Workshops Enhance Employment Outcomes for Adults With Autism Spectrum Disorder? by Robert Evert Cimera of Kent State University, Paul Wehman of Virginia Commonwealth University, Michael West of Virginia Commonwealth University, and Sloane Burgess of Kent State University suggests that Autistic people who do not participate in sheltered workshop programs do better once employed than those who do. The abstract and options for full access can be found here at SAGE's website. But in case you don't click, here is the study's abstract:

This study investigated whether sheltered workshops help prepare individuals with autism spectrum disorder (ASD) for competitive employment within the community. Two groups of individuals were compared: (a) 215 supported employees who were in sheltered workshops prior to entering supported employment and (b) 215 supported employees who were not in sheltered workshops. Individuals from both groups were matched based on their primary diagnosis, secondary diagnosis (if present), and gender. Results showed that there were no differences in rates of employment between these two groups. However, individuals who participated in sheltered workshops earned significantly less (US$129.36 versus US$191.42 per week), and cost significantly more to serve (US$6,065.08 versus US$2,440.60), than their non-sheltered workshop peers. Results presented here suggest that individuals with ASD achieve better vocational outcomes if they do not participate in sheltered workshops prior to enrolling in supported employment.

There were four questions being investigated: how many in each group were hired, how many hours the hired individuals worked each week, how much the hired individuals earned, and how much money was spent on supportive services for each hired individual. The first two were nearly identical in both groups, but the Autistic people in the sheltered workshops earned less and required supportive services costing more money on average than those who were not in sheltered workshops.

I suppose there are several possible reasons for this major discrepancy.

Firstly, it may be that sheltered workshop programs are not designed for Autistic people. It is a well known fact that there are higher rates of homelessness and unemployment (or underemployment) among Autistic adults, but among the homeless population in general, there are very high frequency rates of intellectual disability and mental illnesses (such as Schizophrenia and Bipolar Disorder) as well as developmental disabilities. Because of this, it may be that the majority of sheltered workshop programs are intended and designed to work well for people with intellectual disability (when many, if not most, Autistic people are not also intellectually disabled, and all Autistic people will always have special challenges and needs that people whose sole condition is intellectual disability may not) or mental illness (again, when not all Autistic people also have co-occurring mental illnesses, and regardless, would have special needs anyway), but not designed to address the specific, widely-varying needs and abilities of Autistic people.

If this is so, sheltered workshop programs, therefore, do not teach Autistic people necessary social skills to navigate the job application process or social situations in the workplace once hired, necessary self-advocacy skills in a vocational setting, or marketable or competitive job skills useful for the Autistic individual in question. The purpose of a sheltered workshop program is, ostensibly, to prepare participants with job-related skills to increase their chances to succeed in the hiring process and in the workplace, but it seems that these programs are not helpful for Autistic people. While the participants who were in sheltered programs had the same hiring rate as those who were not, they were receiving lower wages and needing more accommodations and on-the-job supportive services than their Autistic peers.

The authors of the study note that "[it] is also possible that the sheltered employees were more difficult to place and train as a result of their workshop experiences, such as due to learned helplessness or developing work behaviors that might be acceptable in the sheltered setting but unacceptable in competitive positions."

Autism and Dorm Life

2011-07-19T17:23:00.000-04:00

Sometime back in late May or early June, I submitted a medical request for special housing to the Academic Resource Center. My request was filed on the basis of Asperger's Syndrome and Sensory Processing Disorder, and requested a single room (as opposed to having one or more roommates) in order to best accommodate me and prevent unfortunate situations. I learned the other day that my request was approved, so I will be living in a single dorm this year.

But why might a single room be a good idea for the Autistic college student? There are several reasons.

I have heard several horror stories from other Autistic college students or recent graduates who had horrible experiences with the complex social issues of living with a roommate and who ultimately found reprieve in a single room as upperclassmen. Being friends or even friendly with a person is vastly different than having to live in the same small room with him or her. If you are cohabiting, you have to make decisions about who is allowed to do what and who is responsible for doing what, as well as what is forbidden or restricted. If there are problems, you are adults and you are responsible for attempting to resolve the problem on your own before seeking outside aid, such as from an R.A. or someone in the Office of Housing. These are not the kinds of social situations usually discussed or addressed in most social skills classes, nor encountered anywhere but college (or, perhaps, the military.) They are more complex and intricate than determining whether a relationship with another person is friendly or trustworthy, or potentially harmful or disadvantageous. You are forced to interact with this person on many levels, and for the Autistic person, that can be overwhelming, daunting, and exceedingly difficult, especially if the roommate happens to be a neurotypical.

Then you have the sensory concerns. First of all, most of us find that we need time to be alone, to rest and recover from overstimulation -- sensory, social, or otherwise -- that has accumulated throughout a day, and to recharge for the next day or the next event to which we must subject ourselves. That kind of solace and isolation is often found in a private space such as a bedroom. But if you are living in a space where you have a roommate, there is no guarantee that you will have any such alone time to recover. In fact, because your roommate also lives in the same room, he or she has an equal right to be there at any or all times, and you have absolutely no right, ever, at any time to ask or force your roommate to leave except by mutual consent (which again, cannot be guaranteed.) You will then be trapped in a vicious cycle of constant social interaction and stimulation, and little opportunity to recover from it.

Remember, it's not that Autistic people are inherently anti-social or hate other people. Instead, social interactions are much harder for us, more enervating, and far more costly; thus, we need this time alone in order to be able to socialize with you.

But back to sensory concerns. Other than the need to recover from social and sensory overstimulation throughout the day, there are also concerns of sensory stimuli in the room itself. What if the roommate likes to wear cologne or perfume, or use other scented hygienic products, or use a room freshener? What if the roommate likes to play his or her music too loudly or too softly, or puts his or her possessions in bizarre orders? You can't force your roommate to change anything about the way he or she acts. You can ask nicely for him or her to reasonably accommodate you, and you can hope, during the roommate matching process, that your roommate won't be someone who would do things that would irritate certain sensory sensibilities.

In fact, Georgetown has a unique roommate matching system called Charms, that acts much like a dating service but for roommate matching. Ostensibly, students complete an anonymous profile including preferences like bedtime, temperature, cleanliness, willingness to share belongings, and frequency of visitors to the dorm, and can then search for other same-sex students with similar profiles. Upon seeing people with matching responses, students can initiative anonymous messaging with their matches. If they like one another enough through the additional questioning, they can both request to be each other's roommate, and will be paired together if and only if they request each other.

While waiting for my request to be processed and either granted or denied, I was instructed to complete this form in the event it was denied (and that the Academic Resource Center would override this assignment were my request granted), and so I did. In the last part of the profile, under additional information, I was sure to include a stipulation that anyone living with me would have to agree not to use any scented hygienic products or cleaning chemicals in our room at any time. (I did get one response before I was able to withdraw my profile from the Charms process.) But even were I to have been matched with a person who would have agreed to that request (perhaps someone who was allergic to scented to products), there are any number of other sensory issues that I could not have possibly covered in such a brief profile or even in conversations. Some may not be addressed until they become a problem, and it would be better not to create that problem if it can be avoided without any significant cost.

So what does having a single room mean? For one, it doesn't mean that I will necessarily be isolated from social life or activities on my floor. I will be part of a Living and Learning Community (see application essay below), which will have planned activities every so often, and which occupies my entire floor. It does mean that I will have the option of spending time alone to recover from social interaction after spending a day socializing. It means I can choose to be involved in informal or formal activities. I can always invite other girls to visit me in my dorm, too, at my initiative.

It means that I have taken an important step in securing for myself a necessary accommodation to promote my own emotional and social health. After all, it is important for any person, student or not, Autistic or not, to be happy and healthy in all possible ways. In my case, and for many Autistic college students, a single room may be the best option for the flexibility and freedom it gives us.

What is Self-Advocacy?

2011-07-18T13:26:00.001-04:00

Last week, while at a meeting of the Adult Services Subcommittee, a visitor to our meeting said something about "Self-direction," to which I added, "And self-advocacy."

Another one of the subcommittee members, the woman sitting to my right, immediately retorted, "Don't exclude nonverbal people with autism!" This individual is the mother of an adult non-speaking Autistic son with aggressive maladaptive behaviors.

When I responded with, "Excuse me, I didn't say anything about excluding nonverbal people," she continued to say that "Not one nonverbal person is in this room," to which I replied, "But they are welcome to come."

The mother nodded. "They are welcome to come, but you won't see any of them here. They're not represented here. I didn't bring my son so you wouldn't get bruised."

I raised an eyebrow. "Do you mean that literally?"

"If my son were here," said the mother, "he would hurt you. He is very aggressive. That's why he's not here right now."

Later, when someone proposed that the budget for the Department of Developmental Services's Division of Autism should provide services for all people who need them, this mother added, "I read all these people on the internet who are very happy to be who they are, who are proud of their differences and quirkiness, and who are very deeply offended at the idea that they might need services or be cured. We need to make sure the squeakiest wheel doesn't get the most attention. The people who speak the most shouldn't get the most services."

Choosing not to mention the fact that highly verbal Autistic people tend to overlooked in vast numbers in terms of receiving any services in favor of non-speaking Autistic people with few adaptive functioning skills (in direct contradiction to the mother's statement) I responded, "We should amend that language to say anyone who either needs or wants services; that way, those whose families advocate for them can receive services as well as people who request them for themselves." When I said, "We need to ensure that anyone who needs services is able to receive them," the mother snapped, "We're stating the obvious."

Sadly, this kind of animosity and vitriol is all too common in the autism community. We're all familiar with it. But let me dispel a few misconceptions that this mother demonstrated:

Firstly, self-advocacy is not limited to highly verbal people with the Asperger's diagnosis or a self-diagnosis. There are many Autistic people involved with the self-advocacy movement who are nonspeaking, have little verbal abilities, have few adaptive functioning skills, and or may require intensive supported living services, as well as people with many verbal skills, moderate to high-level adaptive functioning skills, and who may require few if any supported living services. To claim that involving self-advocates will exclude nonspeaking Autistics or Autistics with few adaptive functioning skills is untrue.

Secondly, as alluded above, including highly verbal people with relatively high levels of adaptive functioning skills also does not exclude all other Autistic people from either eligibility or funding for services. What it does is expand the eligibility criteria so that all Autistic people, whether verbal or not, are able to successfully petition to receive appropriate and necessary services in their individual cases. This is actually broader and more inclusive than were self-advocates excluded from the process or its results.

Thirdly, "people on the internet" comprises a huge swath of people with varying opinions and beliefs. There are some true extremists out there who promote ideas like "autistic supremacy," akin to the idea of "white supremacy" in that, according to this ideology, Autistic people are inherently superior to non-Autistic people by evolutionary design and innate ability. But the vast majority of Autistic self-advocates do not espouse theories like autistic supremacy. We simply believe that autism is both a disability and a difference, and that the disability should be mitigated and accommodated wherever possible while encouraging and recognizing the validity and value of the difference. For some Autistic people, there is more disability, and for others, there is less disability, but in all cases there is positive difference that, in part, defines the Autistic person's identity, as opposed to being a negative and removable attribute.

Frankly, I'm not all that surprised that my brief comment of two words ("And self-advocacy") was met so quickly with such violent rebuttal. But my hope is that in coming months and years, people from across the autism community -- Autistic people, their parents and families, caregivers, professionals, and educators -- will come to accept that whether or not they might agree on issues like cures and neurodiversity, all of us have valuable and important voices that need to be heard and acknowledged in order for us to move forward.

JDA Application

2011-06-04T17:10:00.000-04:00

This is the application essay I had to write for the Justice and Diversity in Action Living and Learning Community at Georgetown.

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I am Autistic. Sometimes that statement is met with skepticism, and sometimes with curiosity. Because I am Autistic, I want to promote positive understanding and acceptance for Autistic and other neurologically diverse people. Because of the complex and easily-misunderstood nature of autism, Autistic people often face employment discrimination and social ostracism. We are at extreme risk for bullying and abuse in educational, vocational, and institutional settings. Our significant differences in communication skills and social interaction can be prohibitive to meaningful inclusion and equitable treatment in our communities.

Justice for Autistics can take many forms, but it begins when both Autistics and non-Autistics work to bridge significant gaps in understanding and rectify the dearth of appropriate and fair accommodations. In the educational system and by state agencies, Autistics with co-morbid mental illness, intellectual disability, or giftedness are often denied necessary or appropriate accommodations and services. Autistic adults face drastically low unemployment and underemployment rates and have difficulties getting and keeping jobs. We are routinely excluded from roundtable discussions on autism policies or allocation of financial and material resources to autism research or services, and leadership positions in most major autism organizations—the majority of public figures in the autism field and in autism organizations are non-Autistics who claim to speak for all Autistics while ignoring the voices and desires of actual Autistic people.

I first became involved with autism advocacy and the greater Autistic community in the summer of 2009. My focus has been the interaction between Autistic people and criminal justice. Because I am both Autistic and aspire to a career [with a law enforcement agency], I have a unique perspective on the needs both of Autistic people to receive equitable treatment and fair accommodations and the needs of our law enforcement officers (and other people involved in the criminal justice system) to both execute justice and protect all the members of a community—including Autistic people. In order to best foster understanding and avoid more unfortunate situations, such as tasings and shooting deaths of Autistics that have happened nationwide, I wrote and filed legislation mandating training on autism for law enforcement and corrections officers in Massachusetts. It didn’t pass last session, but I re-filed the legislation with two Senate and three House sponsors this session. I testified at the hearing on the bill last week and am awaiting the committee’s recommendation.

Justice—fairness—does not always mean what is equal. This is why I want to continue advocating for justice for Autistics—in our schools, workplaces, and neighborhoods. Diversity encompasses far more than race, color, nationality, physical disability, religion, or sexual orientation—though these qualities are important and necessary characteristics of a diverse student body or community. The neurologically diverse are often overlooked, and I hope to change that through being a part of the JDA living and learning community. I want to learn and develop community organization and coalition-building skills with others, and contribute to neurodiversity within the JDA itself.

Response to "Living With Autism" Feature in Parade

2011-04-04T12:48:00.000-04:00

In the past week, a series of articles by New York based freelance journalist Joanne Chen have been publicised as "Living with Autism" in magazine Parade. This is my letter to Ms. Chen regarding her articles, which I emailed to her this morning.

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Dear Joanne,

My name is Lydia. I am seventeen and a senior at Lexington Christian Academy, and will be graduating in June. This fall, I will matriculate at Georgetown University where I will study Arabic and Islamic Studies. I am also autistic. Specifically, I was diagnosed with Asperger's Syndrome at the age of thirteen. I am a member of the Autistic Self-Advocacy Network and the Autism Women's Network.

I first became involved with autism advocacy in the summer of 2009. Since then, I have written legislation which would mandate training on autism for all police and corrections officers in Massachusetts, which has received the endorsement of several autism organizations and the Massachusetts Developmental Disabilities Council. I have spoken on a panel at the annual conference of the Asperger's Association of New England and will be speaking again at Wellesley College later this month. In May 2010, I wrote an op-ed on the fallacious conflation of autism spectrum disorders and violent or criminal behavior, which was published in the Boston Herald. And since the summer of 2010, I have been conducting a yearlong research project on autistic characters in literature.

I am writing to you to offer a difference perspective -- and a first person perspective -- on Parade's feature "Living With Autism." At least seven of your pieces on the site describe the experiences of families with autistic young adults in the so-called transition age, somewhere between IDEA-funded public education (or publicly-funded private education) and the world of adult services or lack thereof. Your articles highlight the fear and anxiety over not knowing what these autistic young adults will be able to accomplish, over the lack of adequate services and programs, and over the perceived inability of many autistic adults to complete meaningful education or attain meaningful work.

While in many cases, there is a sad trend of under-employment of autistic adults, this is not because autistic adults are unable to attain meaningful employment commensurate with their skill sets and knowledge base, but because of a combination of factors. In some cases, it is because the autistic individual in question did not receive adequate education or vocational skills, was discriminated against either during the hiring process or after beginning work on the basis of autistic-related behaviors, or did not receive coaching in regards to effective self-advocacy in the workplace for legally required reasonable accommodations as defined under the ADA. In these cases, being autistic does not mean being unqualified to perform a specific job's duties or to perform them well. In these cases, it is not the fault of the autistic person but rather a symptom of the systemic problem plaguing our government and community approaches to autism.

The same can be said regarding the residential and housing situation of autistic adults who can no longer live with their parents for whatever reason, neither a residential institutional placement nor a traditional group home (such as those for many people with developmental disabilities) is the only option available, or in many or most cases, the most appropriate option. No two autistic individuals are alike; each autistic person has his or her own unique needs as well as his or her own strengths, talents, and abilities. Autistic people can, in some cases, live independently. In other cases, they may require the service of a part time or full time aide for executive functioning purposes or social navigation purposes in order to cope with the stresses of the neurotypical-dominated world. Some autistic people may require lifelong intensive support.

Any autistic person is capable of amazing accomplishments. Having autistic children near or at the age of transition to adulthood and the often haphazard availability of government-funded services (due to prohibitive eligibility requirements) should not be a time for parents to fear that their children will never find their niches in the world or contribute to history or society. Neither the non-speaking, so-called "severely affected" autistic nor the highly verbal college graduate with the Asperger's diagnosis will be automatically precluded from living a self-fulfilling, meaningful life simply because they are autistic.

Autism is not a tragedy. Autistic people do not need sympathy from our neurotypical peers, or insistence that living in any manner that cannot be labeled "normal" is somehow wrong or in need of a fix. Instead, we need to address the following systemic problems: the belief that anything (behaviors, activities, neurological profiles, etcetera) outside the mainstream is a problem that must be fixed so that it is no longer visible or recognizable; the assumption that autism precludes an individual's potential to live a meaningful life; the conflation of autism with mental retardation or other intellectual disability; the conflation of expressive speech with intelligence and ability to communicate; and the assumption that life without autism is better than life with it.

The focus on services and programs for autistic adults is not the problem itself, but a symptom of the systemic problems which do exist. Why are certain therapies and treatments called "early intervention"? Because of the belief that "anything outside the mainstream is a problem that must be fixed so that it is no longer visible or recognizable." If a parent intervenes early enough, maybe the autistic child won't seem autistic ten years from now. Heavens, maybe the autistic child will graduate from high school and go on to college and no one will ever suspect that this child has ever been autistic because how many autistic people really go to college? This is, you understand, a bit of sarcasm.

The lack of focused services and programs for autistic adults and young adults is also not the problem, but another symptom of these systemic problems. Most people assume that autism is a childhood condition. Few people consider the fact that autistic children become autistic adults, and that autistic adults represent a significant minority of the world's population. Because autism is often addressed within the context of intellectual disability, developmental disability, or learning disability at the state agency level, if at all, specialized supports and services for autistic adults in the transition age or long afterward may not exist, or if they do, may exist in very limited availability. Autistic people may also have an intellectual disability, another developmental disability, or a learning disability. Some also have mood or behavior disorders. But because autism is a complex neurological-developmental condition, autistic people require specialized supports and services which may not exist with broad availability.

At the age of transition, there are numerous options outside seeking help from government agencies or expensive private programs. Wtih respect to any individual autistic person, any truly concerned parents should be most concerned with ensuring their son or daughter is able to live a meaningful life by their son or daughter's definition, not their own. The form this will take will differ between each autistic person. In my case, it has been a journey through social skills therapy, counseling, and developing and maintaining meaningful relationships with friends who both encourage me to reach my fullest potential and provide concrete means of enabling me to do so. Remembering that autistic people are people too (but with different abilities) is a good start. Seeking the advice of autistic adults who have made the successful transition into meaningful lives is another good way to go. Assuming the worst is not.

Your articles represent the genuine struggles and emotional experiences of these seven families. I am not writing to demean those experiences and very real fears. People have the right to be concerned when they do not know what the future holds, parents most of all. What I hope to do with this letter is to offer an alternate perspective on the topic of transition -- that reaching twenty-one, or twenty-two, or eighteen (as the case may be) is not the end of the road. Instead, it can become a beginning and one bursting with positive possibilities, if only one can grasp the full potential of each and every autistic person. We are not diminished in value or potential because we are autistic. Instead, we are gifted with a different set of challenges and gifts. Sometimes, this includes disability. But it always includes ability as well.

I am autistic and I am at the age of transition. Neither my parents nor I am struck with dread at the prospect of my upcoming graduation. That doesn't mean there is nothing for us to be concerned about. There are many experiences that I have yet to live and doubtless I will be challenged in multiple ways over the next four years and beyond. I am certain I will make mistakes and I am certain I will face unpleasant and even terrifying situations. Nevertheless, I am confident that I will pursue my college education with great zeal and afterward will continually strive for greater meaning and purpose throughout my life. Transition has never been a more wonderful word.

Respectfully submitted,

Blessings and peace,
Lydia