A Short History of the Autism National Committee (AutCom)

The Autism National Committee (AutCom) was founded in 1990 by a group of parents and professionals to protect and advance the human and civil rights of all persons with autism spectrum conditions and related differences in communication and behavior. At a time when there were no autism organizations with autistic people participating in their governance, AutCom made autistic people equal partners with family and professionals, inviting individuals with autism to serve on the board in equal numbers — not as token representatives — and electing three autistic presidents. It was the first autism advocacy organization dedicated to "Social Justice for All Citizens with Autism" through a shared vision and a commitment to positive approaches.

AutCom supports the development of, and access to, quality choices for people with autism in the areas of education, employment, healthcare, communication and housing. Autistic people have a right to reliable, trusted, and respected means of expressive communication, including necessary training and support; and to opportunities that maximize self-directed living in the community as consumer and citizen. AutCom opposes institutionalization, the use of pain, humiliation, deprivation, and dangerous drugs as a means to alter and control individuals' behavior.

AutCom's board of directors currently includes people from across the autism spectrum as well as family members and professionals. AutCom's triannual newsletters and its position papers can be accessed at its website: http://www.autcom.org. The members of the Self-Advocate Roundtable are all affiliated with AutCom; until last year, Sharisa Kochmeister was the organization's president.

The Roundtable

E.S.

Welcome to the DSQ Self-Advocate Roundtable Discussion. I am excited to get started. I'd like to begin by asking each of you briefly to introduce yourselves. Let the other participants know who you are and any other information you think is important for them to know about you.

S.R.

Hi, my name is Sue Rubin. I'm 31 years old and a student at Whittier College. As an infant, I was diagnosed with a developmental delay; at the age of four, with autism and moderate mental retardation. I was educated in Special Day Classes with some degree of integration until high school. Over time I continued to test at the 2 to 2 ½ year level, which was compatible with my limited expressive and receptive language, and the way I moved my body. By the age of thirteen, I still scored at this level, which to all appearances was correct. I was (and still am) highly echolalic, obsessive/compulsive, and occasionally self-abusive and aggressive. In spite of this, I graduated with honors from Whittier High School, as a fully included student with a 3.98 GPA and 1370 on the SAT, and I currently hold a John Greenleaf Whittier Scholarship ($38,000) awarded solely on merit, without regard to my disability. I am a dedicated advocate for people with disabilities who works as a consultant to WAPADH, an adult agency, teaching others facilitated communication. I live off-campus, with support, and enjoy an active social and cultural life.

S.S.

Hi, everyone. It's a pleasure to be here. Most of my time is spent in efforts to make the world a better place for those of us on the autism spectrum by engaging in the following 4 activities: 1. serving as a professor teaching educators to meet the needs of their autistic students; 2. consulting and presenting on issues related to autism internationally; 3. giving music lessons to children on the autism spectrum (haven't figured how to teach typical ones yet); and 4. writing books and articles about autism.

Briefly, I became nonverbal at 18 months and was recommended for institutionalization; however, with much work and help from my parents, friends, teachers, and other professionals I completed my doctoral degree. Now I teach courses in special education and autism at Adelphi University. More about me is on my website http://www.autismasperger.net.

S.K.

Hi, I'm Sharisa Joy Kochmeister: a professional author of poetry and essays; a published and performed composer/lyricist; a graduate of The University of Denver with a 3.6 GPA and a dual degree Bachelor's (with honors) in Sociology and Psychology; a professional speaker (dozens of keynotes, workshops and panels in the USA and Canada); a consultant; and an award-winning trainer and advocate in the areas of disability rights, inclusion, and augmentative and alternative methods of communication.

I've been to The White House and have met President Clinton; was one of 500 college students from around the country invited to an annual conference of The Center for the Study of the Presidency; received Presidential, state, county, local, university and private awards for advocacy, community service and influencing public policy. I have written a fairytale about autism to try to help people understand; am writing my autobiography, "My Life As A Zero And My Life As A Hero"; and have won awards for my poetry.

Oh, and by the way, I have multiple other disabilities, including cerebral palsy, epilepsy, being non-verbal, and requiring a keyboard to communicate and a trusted assistant to ease my way.

P.S.

I'm an Asperger adult, 53 year old, father of an autistic son, Jeremy, 18 years old, and a daughter in the broader phenotype, Rachel, 20 years old, and I've been married 21 years to their non-autistic mother, Susan, 55 years old. I work as a software developer. I'm the vice-president of the Asperger's Association of New England (http://www.aane.org), a board member of AutCom and the Massachusetts chapter of the ASA, and I'm on the conference planning committee of Autism Network International (http://www.ani.ac), whose annual conference/retreat is called Autreat (http://www.autreat.com). I do what I can in lay leadership and advocacy roles to move the public discourse and policymaking about autism in two key directions: first, to correct the historical disempowerment of autistic people themselves in the public discourse and policymaking about autism, and second, to correct the historical neglect of adult daily living and quality-of-life issues in the public discourse and policymaking about autism. I think the key adult daily living and quality-of-life issues are: housing (and household management); education (post-secondary and vocational); employment (acquisition and retention); access to quality legitimate healthcare; and living in the community as consumer and citizen. I think that bringing greater focus to adult issues is strategically critical, even for parents of younger children: the 1 in 150 autistic children of today will be the adults of the 2010s and 2020s. Our engagement with DSQ is an opportunity to help correct yet another historical dysfunction: the autistic community needs to develop stronger ties with other communities of people with disabilities. And it is perhaps an opportunity to help correct what is probably the most problematic aspect of the history of autism: the extent to which autism has been misunderstood, both unintentionally and as a result of misbegotten agendas, from Bruno Bettelheim to Andrew Wakefield.

J.B.

Hi, everyone! My name is Jamie Burke. I was given the diagnosis of PDD/Autism when I was 3 years old. I had no verbal language really, and my brain zipped that form of communication closed. I was given facilitated communication as a tool to communicate at age 4. Because of that I was able to begin to speak by reading out loud at age 12. My passion perhaps is to talk about how connections demonstrate the neurological courage in movement when the brain and body attempt to connect. You might say sensory integration was the key to my prison of silence. I am an advocate then, for the method of facilitated communication, and sensory therapies. I now am able to type independently, but at times, need some type of support when I am stressed. My great hope is that the population of those who speak quickly with no domination of autism, will embrace a movement to equal understanding. I am 22 years old, a junior at Syracuse University, College of Human Ecology, majoring in Health and Wellness, and my minor is Native American Studies. I find the Native American history similar in the dreams we also have as a community which desires full assimilation. I speak to many diverse populations about how autism is just a different way of life reality. I, too, would like to have normal acceptance of who I am, really without all the attempts of explaining the differences. It is exciting to begin this discussion.

K.S.

My name is Kassiane Sibley. As far as this whole autism thing goes, areas that I stim on are:

  1. positive representation
  2. accurate assessment (i.e. just because I can do this, doesn't mean I can do that, or can always do it, so stop yelling at me!)
  3. adult issues. In general. So overwhelming, so important.
  4. building a true autistic community within the disabled community for stronger advocacy & social opportunities
  5. most importantly self advocacy & disclosure. I dream of the day that kids can indicate "I am autistic, this is my need" and it's just a GIVEN that they'll be listened to.
T.T.

My name is Tracy Thresher; my better life includes the people who can type with me. I need to tell you my life is hard with many obstacles along the way. I have joined with you to make my story known. My ideas are important for you to hear, but I am not always able to communicate. I am a man in a body that does not do what I want it to do. I struggle with my verbal speech, and this is a huge challenge for me. Saying and doing are issues I have with my body. I am hoping that with education and consistency we can advocate together. How are we to succeed if we do not get our voices heard? To move I need to tell you all we need to rise up and make people hear us. We do that by sticking together and talking to our representatives at the state and national level. Think about what we need to have in order to communicate. For me I need trained facilitators who stay with me like Harvey, my day support, and my case manager Rachel. I wish everyone could facilitate with me. I have the right to communicate. The right to be heard. Why shouldn't I have the right to have trained people to support me? I would like all of you to think about what it means to be able to communicate. For most I think it would include your speech and abilities to use your hands. Particularly I am thinking how it would be difficult for you to comprehend what it would feel like not being able to communicate. Good typing requires good facilitators. It requires people who show the ability to support me. For me, the most effective way to have a voice is by having well trained facilitators who are committed to advancing their skills.

A.B.

Sorry I was late with posting my introduction. I've been dealing full-time offline with a combination of advocacy for other people and health problems that suck up a lot of time. I've only had about two hours per day, on average, when I could do something like write. And a lot of the time I have been using that energy on something else.

So… my name is Amanda Baggs. I'm 28. I had always been recognized as different in some way (sometimes a "bad" way, sometimes a "good" way) but was not recognized as such until I was 14, when a doctor gave me the diagnosis of PDD-NOS (largely to try to prevent insurance from either deciding that providing care was futile, or deciding to institutionalize me indefinitely), and later as I hit adulthood he changed it to autism (since those were not risks for me anymore). To clarify certain experiences (which are rarely the ones people expect of an autistic person, which is why I'm mentioning them) — I was the sort of autistic person who spoke a few words and then lost them around 12-15 months. When they came back, they were echolalic. I had extreme difficulties in receptive language that were later masked by my ability to mimic sounds and match the patterns together to produce seemingly (more or less) appropriate responses. This led to a number of difficulties with expressing myself in language, because I did not learn language as a means of communicating my thoughts, but rather because I thought it was a strange thing that the world required of me. (I did not question why the world made no sense in that regard, it just didn't.) Even when my receptive language score was the lowest on a test I was given, this was simply ignored, because some of my other scores on other parts of the test were so high. The meaning to language slowly seeped in for me over time. In the meantime, I communicated in other ways that were almost entirely missed by others (they had to do with the arrangement of all kinds of things around me), and the words I had learned to say out of my mouth were assumed to be the way I communicated (sometimes they were, but that was nowhere near as often as people thought). When I first typed (which I learned the same way as all my typical classmates), I used it the same way as I used spoken language. But since I was aware of slightly more meaning when I typed, there was slightly more actual communication in my writing.

Then, when I hit puberty, I began to have more trouble with speech and voluntary (as opposed to either triggered or involuntary) motor skills. I had always had trouble in these areas, but I now had less energy to compensate and more actual difficulty also. I began to have longer and more frequent periods when I could not speak at all, and longer and more frequent periods of moving slowly or freezing in place. I had also just in the past year begun to really consistently start to understand language when people communicated with me (in fact, my 11th year was possibly the year I was best at passing for typical), and that began to fall away again. So did any pretense of understanding the academics I was being given. This was sudden at first but quite gradual since then. Unfortunately it was at first taken for boredom at school, so the more trouble I had with everything, the more difficult material I was given. Even after I'd been sent to a neurologist and neuropsychologist (who noticed many elements to autism but didn't have time to diagnose it yet) when I was 13, I was still sent to college at age 14 in the hopes of getting me less "bored". By the end of the year, I had crashed and burned badly and ended up in a series of mental institution stays over the next several years (1.5 years total in traditional institutions, another 2ish in non-traditional institutions (similar power structure but different outward appearance), over the course of about 4 years, and interspersed with each other rather than all at once).

So when I was 15, I was finally recognized as autistic, and my psychiatrist had figured out already that I communicated better with writing than in speech, and even that much of the time when I could not speak, I could still write. He had also worked out how severe my receptive language problems were, but his methods of trying to get me to understand things better (which included endless repetitions of the story of Helen Keller at the water pump and such, hoping the meaning would sink in) were not very effective. I also received a number of other psychiatric labels and learned quickly the penalties for not "living down" to the expectations of them ("You want crazy? I'll give you crazy…"). By the time I turned 18, much of my day was spent unable to speak, and I had to ration speech very carefully in order not to run out of it entirely. When I was 19, I first saw someone using an alternative communication device, and my parents bought me an AlphaSmart. The combination of spending a lot of time typing instead of speaking (which also improved my ability to understand people, use body language, and be spontaneous in the expression of all sorts of things), and being around other people whose experience of the world was similar to mine (and therefore they used words that pertained to my perceptions of the world, for the first time in my life!), meant that I finally began to make a consistent connection between words and communication. But when I tried to turn that connection towards speech, I discovered that even at my best in speech, they just wouldn't connect; communication and speech had always been too far apart, and the increase in motor difficulties meant that I just couldn't bridge that gap. Every time I tried I would end up exhausted, in pain, and with a very muzzy head. I still persisted, but speech was dwindling anyway.

I had begun to use a wheelchair part-time to help me get around during times when I could not walk, and to help me conserve energy a lot of the rest of the time. I was now also dealing with a situation where all I could do when I spoke was use words other than I meant, and I couldn't even speak that often. So eventually I ended up using my communication device full-time. A few years later I ended up using a wheelchair nearly full-time too, and by now I am about to get my first power wheelchair. Because typing was a motor skill that had almost always been of the "triggered" sort, and therefore one I excelled at, I can still type on a keyboard, in fact when they measured my physical stress levels at MIT, the only movement (besides rocking and other automatic movements) that did not cause me stress was typing! So I mostly do that totally independently. But when I am moving more slowly and freezing a lot, or having problems with muscles clenching or loosening, I sometimes need someone to support my arm when I type. I also may need someone to remind me where my arm is when I would otherwise be frozen at that time. This evolved out of necessity and usually happened out of someone's automatic and intuitive response to my situation, rather than because anyone has been formally trained in the methods usually called FC. (Because of that I'm often reluctant to use the term.) But for much longer and in many more areas, I have been using the same kind of assistance when I move in other ways: Even when I can't respond (or respond in a very bad way) to a verbal prompt to brush my teeth, I can respond to someone handing me the toothbrush. And my cat has long known how to get me out of a freeze by running all over my body and nudging the parts that I need to move (she's qualified as a service animal because of this, and she and I have a far more deep and intense relationship than I have with any human — we know each other's patterns in so many ways I can't even name them).

I gave all that history because people often ask me questions like "Who facilitated you before you learned to type?" "When did you learn to type?" and other things that have no simple answer because, if I just give a time frame, they think they know everything there is to know about my speech and language development, even though it's obviously far more complicated than that, given that I actually learned the mechanics of speech long before I even knew what a word was, let alone what it meant.

While my history is not the one people expect of a person on the spectrum, I have encountered people who have had similar experiences. Usually I identify most with people who spent a good deal of their childhood either unable to understand language or able to understand only a little, totally regardless of whether they had speech or not during that time (since speech with little to no receptive language is a highly superficial thing as viewed from the inside, despite its great importance to how people on the outside treat you — and I do acknowledge that having speech, even meaningless speech, gets you treated better overall). Because of that, I identify to greater and lesser extents with Anne Corwin, Donna Williams, Jim Sinclair, and Sue Rubin's descriptions of their early experiences with (partial or total lack of) language comprehension. Of those four people, Anne Corwin, is the closest in terms of other aspects of autism. She did a three-part interview (http://www.existenceiswonderful.com/2008/07/interview-on-growing-up-autism-and.html; http://www.existenceiswonderful.com/2008/07/interview-on-growing-up-autism-and_5644.html; http://www.existenceiswonderful.com/2008/07/interview-on-growing-up-autism-and_28.html). In the second page, question number 6 asks about her language experiences, which are very similar to mine. But even other aspects of her are similar enough that when her boyfriend met me he swore we were separated at birth. This despite the fact that many people would put us into very different autism categories than each other based on superficial things, including the fact that I get my daily living skills problems taken care of through government-funded services while she gets her equally severe problems taken care of through her boyfriend! We're still not sure how many of the differences that do exist between us are innate or the result of different environments growing up. I also relate well to people who have a very unusual way of understanding the world, again whether they have the superficial capability of looking typical or not. (I know those superficial capabilities can mean the world of difference between being written off and being considered capable, but from an internal perspective of what our real experiences are like, they're close to meaningless, just a bunch of things moving around so high in the sky as to be lost to view.)

On the other hand, I have a lot of trouble relating to people who may superficially resemble me but whose internal experiences are utterly different, like people who always had an understanding of the world, and/or of words, that closely matched that of non-autistic people, but were unable to communicate about it because of speech difficulties. Even if they resemble my superficial appearance as an adult (which is, in terms most people would use, a person who looks "low functioning" and "retarded" to most people, who either has a lot of unusual movements or doesn't move enough, who has a lot of trouble with daily living skills, and who almost never uses meaningful speech), they still might have nothing in common with my experience of the world. So, I'm all about our internal realities, not our external appearances. Even though I know our appearances (or what others decide our appearances mean) play a huge role in how we are treated. I just don't think someone's resemblance to someone else's appearance means they resemble each other inside at all, so I've never put a lot of stock in categories that people use to define us entirely by a small number of externally visible traits.

So now that that's all out of the way… As far as what I do and all that… I have certain principles about ethics that are very important to me, rooted in my deepest experiences of how the world fits together. Then I apply those ethics to various situations. And that's how I approach things like disability advocacy, of which I consider autism-related advocacy only one piece. Despite my frequent loathing of words, I write a whole lot. Less lately because of health problems and offline obligations, but a lot of the work I do is still through writing. I don't believe that there's such a thing as what Peter Singer would call a "non-person" (he believes that you need certain cognitive skills — having a sense of yourself through time, being able to think in certain ways, etc. — to be a person, and given that I remember myself before I had those skills, and that I know I was a person then, I totally disagree). And a lot of my advocacy is built around the fact that we are all people and we all have certain basic rights.

Nobody is unimportant or expendable, and there ought to be no division between those a society goes out of its way to take care of (those currently considered non-disabled) and those it doesn't or those whose needs get considered "special" (those currently considered disabled) because everyone ought to have their society go out of its way to make sure they can continue to live the best life they can. That's how I approach life and so that's also how I approach disability advocacy. I hope that one day the services I receive (which are considered special and often expendable when budget cuts come around) will be seen no differently than most people's ability to get the services they need without it being considered a big deal with degrading tests, etc. etc. etc. There's a whole lot more to say, but my brain is running out of words and there was a request for us to get our responses in this weekend, so I need to save the rest of my words for my response to the question.

E.S.

It is a positive sign that even before he took office President Obama asked his transition team to meet with various autism advocacy groups.

What do you think the administration's top 2-4 priorities should be and why?

S.R.

Priorities for the Obama administration:

  1. Assume that most important to me is the ability to remain living in my own home with the support that I need to achieve my goals of going to school and being an advocate. That would involve ensuring that there are always the funds available for me to continue receiving the services that I currently receive and the ability to continue hiring awesome staff.
  2. Enforcing all of ADA.
  3. Assume something has to be done about the economy.
  4. Lastly, making sure that this country provides equal rights to all of its citizens.
P.S.

I would add to "enforcing all of ADA", strengthening it to undo some of the undermining of it that has happened in the courts, so that there is no ambiguity about Congress's intent.

A.B.

Top 4 Priorities:

  1. Make sure the environment is not so trashed that other concerns become meaningless.
  2. Make sure our economy is not so trashed that other concerns become meaningless.
  3. Make disability services and all other services that are necessary for keeping people alive top priorities so that we are not always the first to be cut. This means that there needs to be absolutely no tolerance of sentiments that we are "burdens" or "useless eaters" or "wastes of taxpayer dollars" or "people who don't contribute to society" or "people who take resources away from truly productive citizens" or "people who ought never to have been born in the first place." Those sentiments already contribute to our oppression, but such sentiments frequently increase during times when resources are scarce and people are looking for someone to scapegoat. When these sentiments increase, we start dying.

    This also means that people have to stop acting like it's better or cheaper to put us in institutions, whether those are large state-run institutions or small group homes or nursing homes. The mortality rates increase the more you put us in those environments, and nobody would live in such environments given a choice to live a full life elsewhere. Not giving us a choice to live a full life elsewhere means we start dying. Every disabled citizen needs the choice to live wherever we want getting whatever services we need.

    This also means recognizing that disability services are not synonymous with healthcare. Putting more money into healthcare for everyone is a good thing, and many disability services are paid by Medicaid waivers (and there needs to be something similar for Medicare instead of the strong institutional bias that exists for it). At the same time, when people assume that feeding, bathing, dressing, communicating, educating, etc. are healthcare services, then often our actual services can get their funding cut even if healthcare spending increases!

    This also means recognizing that many disabled people are poor, and therefore services such as low-income housing (and low-income housing that is accessible to us on many levels, not just wheelchair) are not cut either. Many disabled people die on the streets all the time or are faced with a choice between living on the streets and living in an institution. That is not a choice any human being should have to make; it's a choice between two different flavors of hell.

    So basically we need all funding for disability services to be increased, not decreased. And all of the funding that is funneled towards institutions (i.e. all forms of congregate care with certain power structures, regardless of the shape of the building) needs instead to follow each individual person to wherever it is that we want to put it in order to live the lives we want to live.

    And if there has to be a cut in funding somewhere, don't take it away from us. Take it away from somewhere that isn't already mired in poverty and substandard living conditions, and don't allow anyone to excuse what is happening to us by making us sound like less of a person than anyone else because we are people.

  4. Avoid putting public health at risk by listening to people who claim they are acting for the sake of people with autism but who really are acting in ways that could hurt a lot of people. The small faction of what calls itself "the autism community" that takes positions against vaccinations is well-funded and well-connected. Most actual autistic people are neither of these things. Being well-funded and well-connected means that they are listened to more than those of us who aren't, but that itself is an aspect of how socioeconomics plays out in America. There is no actual science to their position, and their position could hurt a lot of people.

    I am autistic. I also have a lung disorder called bronchiectasis that can be fatal if not properly treated. It is a form of permanent damage to the lung that is almost entirely wiped out in developed countries like the United States. This is because by far the most common cause of it is any of several vaccine-preventable diseases. (In my case, it was caused by people's anti-disability prejudice making them fail to treat a series of lung infections in a timely manner.) Therefore, it's most common in countries where vaccines are not widely available. It also leaves me more vulnerable to infections than usual and less able to clear them, which can lead to a vicious cycle ending in death if the condition goes untreated.

    Because of this — and because some of my lung problems make me have to take drugs like Prednisone from time to time, which can suppress the immune system — I am far more likely to be negatively affected by people not being vaccinated than most people are. Even if vaccinations caused autism in some people (which science already shows they don't), I would far prefer to be vaccinated and autistic than unvaccinated and potentially dead or a carrier of diseases that disproportionately kill people like me and others with chronic health problems as well as babies and elderly people.

    I do not happen to believe that it would be a good thing for this country to return to the days when children routinely died before reaching adulthood, and many of those who survived had long-term health conditions like mine that could shorten their lives. I do not believe that babies, elderly people, or people with chronic health problems ought to be considered expendable. So I believe that even people who sincerely believe that vaccines cause autism are being shortsighted and selfish when they attempt to convince people to avoid or delay vaccinations. And I deeply resent the idea that decisions that could result in my death (as a person with chronic health problems) are somehow being made in my name (as a person with autism).

    Please don't listen to these people. Even if they were right, which they are not, it would not justify the consequences of the deadly games they are playing with public health.

T.T.

I feel strongly that my life has been improved because of the services I receive, so I would have to say continued funding for services and programs. The education system needs more attention. There are too many students who do not receive quality education and fall through the cracks. I have personal experience with this, and I am finally now able to have positive relationships in my life. My team is dedicated and willing to go the extra mile to meet my needs, but without proper funding, this may end. I would also say that the working poor get the short end of the stick, and they do not have access to viable resources, such as health care, and cost of living expenses are godly high. This is interesting — I could go on for days about politics.

S.S.

Priorities for the Obama Administration should be…

  • Complete and proper education for children at all levels — whether on the autism spectrum or not.

    Doing so will empower those on the spectrum to lead fulfilling and productive lives to their greatest potential while contributing to a richer society.

    Making this happen means providing proper resources of training, material, and time for educators of students on the autism spectrum.

  • Scalable support resources for persons on the autism spectrum and other conditions.

    Often the only thing keeping a person on the autism spectrum from gainful employment is a limited amount of organizational or other support — such as an hour a day.

P.S.

I have thought and said for some time now that we need to focus on 5 areas critical to quality of life:

  • Housing
  • Education
  • Employment
  • Access to legitimate quality healthcare
  • Living in the community as consumer and citizen

I think "complete and proper education," as Stephen says, is a precursor in at least some way for each the rest of these: employment, living in the community as consumer and citizen, proactively navigating the healthcare system, and setting up and managing a household or one's share in a shared household, so I agree with him that it should be a priority.

Education, access to healthcare, housing, and employment are already priorities identified by the Obama administration. I think what we need to do is work with the administration to identify how autistic people's issues in those areas dovetail with (and sometimes amplify) the issues faced in those areas by other segments of the population. Solutions developed for the population at large should also work for the autistic population.

I also agree with Stephen's other observation: as the 1-in-150 cohort of today's autistic children, with its wide range of ability and disability, ages into adulthood in the next decade, we will find that what is needed is what Stephen terms "scalable degrees of support." For many, as Stephen says, consulting support on the order of an hour a day to help with finances, workplace issues, household maintenance, etc. will be the make-or-break difference in quality of life and independence. Others will need support that requires more hours-per-week and more concrete physical assistance, but in all cases, it needs to be the recipient in control of how and by whom those services are delivered, and way too often that is not the case.

S.K.

Top priorities for Obama's administration:

  1. Pay attention to the health needs of all unserved and underserved citizens.
  2. Make equal access to education, technology, employment and housing a reality rather than an afterthought.
  3. Educate "typical" people as to what "atypical" really is and what it has to offer.
  4. Fight for a clean planet that we can pass on to many generations to come.
E.S.

What are the biggest obstacles you confront as you build meaningful lives for yourselves?

A.B.

The biggest obstacle I confront when I try to build a meaningful life for myself is the fact that the entire society I live in was planned in a good deal of detail for a sort of person that I am not while planning hardly at all for many of the sorts of person that I am. And that the sorts of person I am are in many respects considered inferior and expendable sorts of people, or people who take away necessary resources from "real" (meaning "normal") people. Everything else is details of that fact.

P.S.

And I think that the crux of all of this is figuring out how to open the eyes of those in power — how to give that problem statement the kind of traction that will lead to concrete changes in that status quo.

S.K.

My obstacles are obstacles only as society and I let them be… the biggest obstacle I face is lack of understanding, followed closely by lack of patience and lack of the money needed to live my life without relying on government support. Medical challenges are very real and always an obstacle, but at least there are ways to deal with those. Attitudinal challenges and prejudice are much more insidious, evil and incredibly difficult to overcome!

P.S.

Re. attitudinal challenges and prejudice: Legislation or action by the executive branch of government can't directly, instantly change attitudes and prejudice within individuals, but they can make changes so that over time, attitudes change in a large enough portion of the population that hurtful attitudes and prejudice become socially unacceptable. That process is well underway with regards to religion, gender, and ethnicity, somewhat less so but still significantly underway with regards to race, and in earlier stages with regard to sexual orientation and atypical gender identity — and with regard to disability and neurodiversity. So I think the question to ask — and to ask the Obama administration, because I think this formulation will have resonance and traction with its people — is this: what do we need to have government do (or support private sector nonprofits and for-profit companies in doing) to foster and accelerate that sea-change in attitudes and in social acceptability of negative attitudes? In particular, what are the parallels with what government did (or supported) with regard to those other dimensions of difference in which attitudinal change is further along: religion, ethnicity, gender, race? Or even some of the less-far-along dimensions. For example, what led to IBM becoming a major funding sponsor of PFLAG (the pre-eminent organization of family allies of LGBT folks)? Was that at all supported or enabled by government (for example, in the form of favorable tax treatment for supporting a nonprofit)? (An aside regarding PFLAG: I've long wished that autism organizations focused on supporting families of autistic people would operate the way PFLAG does, to help family members become allies of self-advocacy. A few do, but most don't.)

E.S.

How did you learn to be a self-advocate?

K.S.

I learned because I had to, really. Lots of trial and error, mostly error. When you're a kid whose neurology isn't being respected, but instead you're being told that you need to suck it up and deal, you HAVE to learn how to get your needs met through ways other than parental mind reading.

So I learned what I liked. I learned what I disliked. I learned what I needed. I learned what I could do for myself. And through a long, painstaking process of failures and successes and more failures, I learned what I couldn't do for myself, and who I could ask for help. I learned about prejudices. I learned about people who lie. I learned about people who say they'll help but won't. I learned about systems that'll string you along and say they're supposed to help people like me, but then when you finally jump through all the hoops, you find out they won't for some arbitrary reason.

Through this process, I learned my limit of what I really could do (read "learned" as "ran headlong into my wall"). I learned the code words that mean "I'll pretend to help you but actually won't." And I learned the effective and not so effective ways to ask for help. Kind of. I learned the power imbalances; for example, when SSI fails to send you a check for over a month when you've been on for over a year, and you call 6 times, and they snap at you to go in then, and you point out that they have all the power and the tazers, and gods forbid you act like a pissed off autistic person who's not gotten your services, and you can end up dead from that. They don't like being told the power imbalances.

So I tell them that more. Speaking truth even when it's uncomfortable is the biggest, longstanding advocacy skill I've learned. They spent all that time teaching me to communicate their language, now they're going to have to listen when I use it.

T.T.

I am a man with autism, and it has taken me my whole life to be the assertive advocate I am today. I have achieved this by accessing facilitated communication (FC). My family knew I was intelligent and for many years spoke for me because I did not have a reliable way to communicate. My mom was my strongest advocate. She sought out services that were necessary for my growth into a man and not just a man with autism.

The impact of learning to speak up and have a voice has been quite meaningful for me. I have typed life goals and dreams that have actually come true. One dream of mine was to go to church and be baptized. I told my mother this and it happened. I have been able to meet with my pastor and discuss God and the Bible because religion is very important to me. I am learning to do the things I want to do: teaching others about autism and FC and movement differences. These are things I've wanted to do, and now they're happening! This would never have happened without FC.

I have been appointed by the Governor to the Vermont State Standing Committee on Developmental Disabilities. This is a very important appointment because I am the only autistic person that uses FC to communicate who is on the committee. I was chosen to represent recipients in order for all people who receive services to have a voice.

I am thinking I will always need supports to have a quality service network. I am able to be an advocate because I have people in my life who support my communication. I must show how open minds are the ticket to learning how to support proper quality of life initiatives. I think sitting on committees and other structures that plan for, and make decisions about, the lives of people with disabilities is extremely important; with so much at stake, we need to voice our opinions front and center so that typing is seen as valuable input.

The current wars on autism are deeply misled, and a strong voice is needed from people with autism. Without that voice, fear will guide the way autism is treated. That has more to do with people's misunderstandings of what autism is, and I think people have loads of awful professional information. We are not a diagnosis or a label; we are people with feelings, likes and dislikes, very much like everyone else. The way to think about this is that each person is an individual with there own uniqueness, so don't think autism, think out who the person is.

Why — to me — is self-advocacy important? It is my lifeline to working real thoughts through typing and the outside world. The thoughts are there, waiting to come out, and hope for a better life pushes the words out. My advice to you is to get support from a knowledgeable Communication Partner and get out into the world, so you can make connections and learn how to speak your voice. Leading the way is our responsibility and our right to have a voice. While typing this, I am thinking my life sucks because of how little say I have at times and because people speak for me, but here I am typing real thoughts about things that are very important to us. All I wish is that we didn't have to deal with so much ignorance; really I do, but so be it, and onward soldiers, and let's change how people view disability.

S.S.

First, I had to learn that self-advocacy was an important skill to have. I noticed that many of my autistic friends, me included, had little idea how to effectively let others understand our needs in a way that others could be supportive. Upon this realization, I began to research on my own how to gain this important skill, and I thought the best way to do so was to ask others on the autism spectrum how they accomplish this task.

After continued research in this area, it became clear that a conference on this topic was needed. To my great appreciation, Cathy Pratt and others at the Autism Society of America gave us space for a full day during the preconference time of their annual national conference. At that point, I gathered 5 of my friends whom I felt could help with an agenda of promoting successful self-advocacy and appropriate disclosure for those of us with autism — and by extension, people with differences in general.

Led by myself and 5 other autistic people, 50-75 people on the autism spectrum and their allies spent a day presenting on, and discussing, ideas about advocacy. Following, the 6 of us collaborators wrote chapters based on our own takes on self-advocacy and disclosure presented at that meeting, which became a book entitled Ask and Tell: Self-Advocacy and Disclosure for People on the Autism Spectrum.

Further work with Valerie Paradiz and others made it clear to me that successful self-advocacy presupposes having an awareness of one's own challenges.

It is this awareness that allows a person to formulate an advocacy plan following a three-step sequence. The first step is scanning the environment for challenges in the sensory, cognitive, and socio-emotional domains. More about this scanning process can be found in the forthcoming Integrated Self-Advocacy Curriculum by Valerie Paradiz, another person on the autism spectrum. After this scan takes place, the person can work out how to let another person understand their needs in a way that can be understood. If one is going to ask for a modification or greater understanding, then the reason(s) why must be provided. This is where disclosure comes in. Whether to provide a total or partial disclosure depends on the situation. In summary, it is through this process that I too learned how to advocate on my own — and hopefully help others successfully do the same.

S.K.

I have been told I'm a born leader — learned to advocate by doing and won an award for it at age 16, haven't stopped since! Not just self-advocacy either — I advocate for all who need my "voice"! My new magazine, "The Voices and Choices of Autism" with 600 subscribers worldwide and 120 pages for its premiere issue on June 20th is merely the latest and probably most notable example. I'll be speaking 3x at ASA in July, and that's another example — and then, of course, there's the presidency of AutCom and Colorado DD Council Executive Committee among others.

P.S.

I think there are two kinds of self-advocacy: personal self-advocacy and collective self-advocacy.

Personal self-advocacy is about improving one's own quality of life; it is an activity that all of us should be able to engage in, and for which all of us should have the opportunity to develop the skills needed for it to be effective.

Collective self-advocacy, on the other hand, is about improving the way our entire community is treated in the society at large — about reaching equity and parity in that regard. This involves changing the way the media and the general public view autism and autistic people. It begins with changing the way parents, siblings, caregivers, professionals, educators, employers, clinicians, and researchers think of autism and autistic people. And before that, it begins with how we ourselves think of autism, autistic people, and ourselves.

The Deaf community has been a good model for us in that respect; it pioneered the once-radical idea that it should be possible and desirable for Deaf people to live as maximally capable and empowered Deaf people, not as broken or incomplete people-without-hearing. The idea of building accommodations, such as closed-captioning, text-based communication media, visual building alarms, public transportation announcement displays, and so on, into the everyday life of all people is no longer radical. In other words, they have gone a considerable distance towards bringing social-model-of-disability ideas and perspectives into the mainstream discourse.

Our challenge, in collective self-advocacy, is to do the same. In the case of autism, both the medical model and the social model are relevant — but the public discourse has been almost entirely medical-model based. That has to change.

I write and speak from two perspectives: that of an adult on the spectrum (married to a non-autistic spouse) and that of a parent of an autistic son and a daughter in the broader phenotype. I use the general-purpose writing and speaking skills I have learned over my life through formal and self-education — for better or for worse. (I joke that it sometimes feels like I think, write, and speak in Henry James-sized quanta in a world that all too often has an Ernest Hemingway-sized attention span. I still struggle, after all these years, with the problems of gauging how much associative context a given audience needs and of how best to serialize that multidimensional associative context into a linear stream of words — words that they will then be able to be deserialize back into enough of the multidimensional context to see the sometimes somewhat cubist insights and nuances I saw in the original.) I think that I am most effective when I can use analogies and contrasts to get people to look at problems or situations from perspectives different from those they are used to.

J.B.

I thoughtfully used the opportunity to realize the meaning of inclusion when I was attempting to engage the autism emotion of working within the words of my typed communication. When the events of working through the processes of this type of communication helped me in the inclusion arena, I became open to the true work of this support. It would seem that to speak about this to other people helped those to understand why people who had no speaking pattern or grounding sensory system would need these to strongly assist the body and brain with movement attempts and that it could improve their work. This, then, became a love of sharing my own journey with others and coming to believe dearly in the power of shared strength. Developing the process of language was something that was directed by the mission of entering a university arena where the college life surely challenged the effective confidence I had understood. So, to tell the story to others, then, is to dream in the true form of life-learning. We may have allowed the demonstration of failing to exist with the demonstration of success and the possibility that we need to be allowed to have them all.

A.B.

I didn't learn all at once. I learned several things over the years and lost them again and had to relearn them, all of which contributed to self-advocacy. I doubt that I could write about them all at once. (I can be terrible with questions like this.)

At one point I learned violence towards people and things that represented oppression and inhumane treatment. Although people often hate hearing this, violence towards institution staff, breaking holes in the walls of institutions, etc., can all be acts of self-advocacy and assertion of our common humanity. I write about this more in "The Meaning of Self-Advocacy," (http://www.autistics.org/library/self-advocacy.html) which discusses many of the only means of self-advocacy available to people who don't know how to use words for the purpose, or find that words don't work enough for them. Please read the above link to "The Meaning of Self-Advocacy". Every word of it is a real part of my response to this question. Here is one important part of it but please read the rest:

Self-advocacy doesn't always look good on paper. It doesn't always stay within the sensibilities of people who want everything neat, orderly, pretty, and civil. People who declare a certain category of person to be uniformly incapable of self-advocacy are usually the same people who view that category of people as people who must be controlled rather than listened to. Self-advocacy doesn't mean staff get to pat us on the head, use the right buzzwords, tell us what wonderful little self-advocates we are, and then chastise us or put us on a behavior program when we get angry at them about their controlling behavior.

Self-advocacy is fundamentally about true equality, respect, and power, and about recognizing and changing the current imbalances in all of those things. Whether it is going through the legal system to close an institution, fighting back physically against intolerable surroundings, talking back to staff, sabotaging the power of staff over the lives of disabled people, being listened to when we communicate in non-standard ways, learning that it's okay to have a voice and make decisions, or passively resisting the dominance of others over our lives, real self-advocacy will always upset the status quo in some way.

No matter how legal and proper it is, self-advocacy won't be comfortable and cushioned. It will not give the people who are used to having power over us a warm fuzzy feeling of helping us nor will their viewpoints on what we should be doing be able to dominate us and speak through us. They will not be able to pretend away the power inequalities between us and live in fairyland where everyone's the same and that's what counts. It will frighten them and force them to examine themselves. This will be true not only for non-disabled people but for disabled people who are used to feeling superior to other kinds of disabled people.

I was once told by a surprisingly renowned "parent-advocate" that I only have a voice because Gunnar Dybwad gave me one and that I should sit back and let parents and professionals do all the work towards closing institutions in my state. I beg to differ. Self-advocacy was not born with Gunnar Dybwad, no matter how much of an ally he was. It was born the first time a suspected changeling tried to run away before anyone could kill him; the first time an inmate of an institution resisted staff power; and the first time someone without a standard system of communication devised one of her own and tried to communicate basic things to other people.

Aside from violence, which I no longer use, I had to learn to use words to mean the things in my head, as opposed to simply using them as a part of solving an incomprehensible puzzle. This experience makes me differ from people who had perfect understanding of language, thought in language, and yet did not have a means of using it. I had a means of repeating complex words in specific orders in response to various questions, but I did not have much of a means of using them to communicate my own thoughts. When that happened, it was sporadic and not something I could call up on purpose.

Learning that has taken my whole lifetime and has been a slow process. I had to come up with an understanding of the patterns of language (without understanding its content), then the meaning of the content slowly dropped in like the occasional raindrop. Then I noticed that other people were able to do something I couldn't do. Then I had much of what I had learned trained out of me and had to relearn it. Then once I had a handle on the purpose of language and how to use it, I had to wrest control from the systems I had used to survive in a world that demanded words, words, and more words. And wresting control was not easy or fast. So it has been an incremental sort of success. It did not happen all at once in a flash; it has ebbed and flowed like the tide, slowly getting closer and closer to being able to use language for the purpose of communication all the time. I am not all the way there even now, and I can still lose that ability — one of my most tenuous — at the drop of a hat.

I also had to learn the confidence to speak up for myself. For a long time I could not do so, then I only spoke up because of caring what happened to other people, while not caring at all what happened to myself (or caring but not truly thinking I was worth it). I had to learn I was just as worthy of caring about as anyone else. Then I had to learn that people would at least sometimes listen to me, so it was worth writing things.

None of it has been simple. Like most things in my life, it is a jagged pattern of learning things, losing them partly or entirely, and then relearning them. Like most things in my life, it has required learning things that most people are born knowing. Like most things in my life, it has involved skills developing in a pattern that most people have trouble even believing is possible because their skills are tied to each other in such a different pattern than the one mine are tied up in. This has required believing, even in the face of total lack of understanding or approval from others, and even in the face of my own despair, that something about this was worth doing, and then relearning again and again and again, until it became more and more a solid set of skills. A big part of how autism works for me is in having skills remain unstable and subject to loss that in most people are the solid foundations they build other skills upon. There are good reasons for this and positive aspects of this, but when it comes to learning self-advocacy skills, many of the skills have taken much more work than usual to acquire and maintain. I am glad it is worth the work.

Also, I should note that when I say self-advocacy I mean advocacy on behalf of either myself or other people in similar situations to mine. The word self-advocacy was created to differentiate it from advocacy done by family members and professionals. It was not created to confine self-advocates to only advocating on our own singular behalf.

E.S.

Given that there are a significant number of self-advocates who identify as being on the spectrum, what role — if any — do you think parents, siblings, caregivers, and professionals can, or should, play now?

J.B.

I need the support to attempt the movements and that realization frees me. Support from my family, communication partners and friends helps to formulate the independence of decision and to connect with the processing of interpretation of structured language and experiences. Excellent supports are fundamental for my curious life with autism.

K.S.

Allies can be our allies. Don't do for us unless we ask you to. Don't assume you know better than we do what we need or want. Presume we are capable enough to at least know what we need, what we want. And that what we are asking for is what, right now, we want.

If you think it's a mistake, give us the dignity of making a mistake. At least talk to us about it rather than using your considerable NT privilege to block our learning experience. Everyone sometimes fights for something that is ultimately a bad idea, but it is growth. Do not take that away from us.

Do not assume that because we can do other things, this "simple" bureaucracy that we're asking for help with isn't beyond us. Give us the respect of believing us if we ask for help. It's not an easy thing, especially for those of us who taught ourselves the not-so-fine art of steamrolling systems to get what we need.

Do not act as though being an ally is a favor you are doing us. I'd rather have no allies than reluctant ones who hold it over my head. That's passive aggressive, manipulative crap, and it's thoroughly not acceptable.

Stop the reliance on compliance training. It's not doing us any favors in our adult lives.

Instead of trying to teach us to fight so hard in a system that fights us to the ground, fight with us to change the system.

S.S.

It is most important that people have an open mind to what others with differences can contribute to society and, in return, may need supports in. I think if there is acceptance for who people are, as opposed to whom others think they "should" be, that will go a long way. Moving away from judging others helps a lot. It's too hard to judge others anyway.

P.S.

There is an extremely important role for non-autistic parents, siblings, caregivers, professionals, educators, employers, clinicians, and researchers, who are (or come to be) in agreement with the perspectives and priorities we voice as self-advocates: that of ally.

The gay community has pioneered and developed the notion of ally, and I think their work is a very good model for us. There are so many parallels in our respective experience — issues around disclosure, bullying, supportive vs. hostile organizational and institutional cultures, and more. The gay community's response to the basic fact that LGBT people are, and always will be, a numerical minority within the species has been to find strength in numbers larger than their own — the numbers of straight allies that can be enlisted to support the changes for justice, safety, equity and parity that the community seeks.

And here again, our challenge is to do the same. Each of the categories mentioned in the question — parents, siblings, caregivers, and professionals — and those that I have added — educators, employers, clinicians, and researchers — exert authority and leadership in different facets of the life of the society as a whole that can be brought to bear to help bring about change that improves the quality of life of autistic people.

Parents, siblings, and caregivers who understand that they need to have decade-sized horizons and start early on to work for equity and opportunity in the challenges of obtaining housing, employment, post-secondary education, access to quality healthcare, and living in the community as consumer and citizen that today's autistic children will encounter as they transition into adulthood in the next decades are acting as valuable allies. Professionals, legitimate clinicians, and researchers who understand that they need to lead the public and the media by conveying realistic hope regarding outcomes, rather than the fear, uncertainty, and dread we see about autism every day in the media that drives panicked parents into the waiting arms of the burgeoning autism quackery industry, are acting as valuable allies. Educators and professionals within schools and academic institutions, and management and human resource professionals within businesses, who understand the barriers to educational advancement and to sustained and advancing employment that autistic people face and who choose to put their weight and power behind mitigating those barriers are acting as valuable allies. And allies in one of these categories who organize and orient allies in these other categories to where they can have the most impact and do the most good are especially valuable allies.

But first, to do all that good stuff effectively, allies need to be identified, educated about our perspectives and priorities, and empowered. The gay community does a tremendous job in that respect; we need to learn from it. That change in the way the rest of the world thinks about autism and autistic people? We have to make that change — with a little help from our friends.

More of what I have written along these lines of thought can be found in the chapter I contributed to Ask and Tell: Self-Advocacy and Disclosure for People on the Autism Spectrum, Stephen Shore, ed., Autism Asperger Publishing Co., 2004, and in the essay I contributed to the proceedings of Autreat 2004, http://www.autistics.org/library/allies.html.

I would also point out that the other chapters in Ask and Tell are excellent resources on personal self-advocacy. In particular, Kassiane Sibley's chapter shows how personal self-advocacy can be practiced at all stages of development and all levels of communication ability.

A.B.

The biggest thing is be steadfast. Don't run off when things get difficult. Self-advocates have no choice but to live the consequences of how other people think about us and treat us. I am often painfully aware that allies do have a choice. And I have seen some people who were once allies run away once the going got tough, in a way that I could never run away if I wanted to survive on a very literal level. So please don't run off the moment you see danger or even hurt feelings ahead. There are those of us who have no choice but to stay, and we need our allies the most at those times when they are most tempted to run off and hide.

Remember the advantages you have over us. Not for the purpose of feeling pointlessly guilty, but for the purpose of understanding both of our relations to the power structures in the societies we live in. Remember that when you advocate for us, you are likely to be seen as selfless, whereas when we advocate for ourselves, we are likely to be seen as selfish. When you speak about us, other people see expertise compared to when we speak about ourselves. When we speak about ourselves, we constantly face people trying to tell us that our experiences aren't everyone's, and finding other ways of marginalizing us. You are seen as more credible than we are seen. You have power we don't have.

And when you see those advantages, use them to combat our disadvantage. When you are seen as more credible than we are, communicate to others that we are just as credible as you are. Do not listen to, and urge others not to listen to, people trying to undermine our credibility. When you are seen as selfless for advocating for us, make sure others know that we are not being selfish. When you are seen as an expert, point out our own expertise. Don't do these things in a guilty way or a patronizing way. Do these things so that we will eventually gain the same advantages that you already have.

S.K.

My Dad, sister and step-mom have done all any reasonable human being could be reasonably expected to do, and my paternal grandparents went above and beyond the call when they were still alive. The best thing allies of any kind can do is be TRUE friends and accept us as who we are, not how we look or act. Patience, flexibility and willingness to listen and learn are all keys to being there.

E.S.

For some people receiving a diagnosis is a long-awaited relief that sets them on a road to understanding; for others — in the words of Larry Bissonette — it can be like "leasing a car with destination determined ahead of time." If you're willing to, talk about your experience with diagnosis. Also, talk about what changes — if any — should be made to the DSM-V's criteria for autism or for Aspergers.

P.S.

I think that a correct diagnosis helps answer a lot of questions, but even more important is a realistically optimistic prognosis. A diagnosis (and prognosis) should never be the source of foregone conclusions. It can, and should, give you some idea of what sorts of things are going to be harder for you to accomplish and what sorts of things are going to be easier. The real answers, though, are to be found in the details about you as an individual, not in the broad diagnostic-manual-category label. Thinking constructively about the details should lead to strategies — how to leverage what does come easier in order to accomplish the things that don't come so easily. Clinicians should be trained in how to help their patients engage in that constructive thought and strategizing, post-diagnosis.

For my son, his autism diagnosis confirmed a number of things and helped get us connected to early education providers who then helped with the details and the strategizing. We learned to help him leverage his good rote memory, his love of sequence and enumeration-of-sets, and his ability to take the first steps in reasoning deductively to gain the skills that he was not gaining the way his non-autistic peers were (by immersion and osmosis in a typical preschool setting). In all the years since, we've made a point of orienting teachers, para-professionals and tutors to identify and leverage his strengths to find alternative ways, when necessary, to meet challenges. The overarching goal is for him to live a maximally enabled life as an autistic person.

For me, diagnosis with AS was paradoxically liberating; I'd spent the years since social self-awareness had really kicked in, in late adolescence, trying so damn hard to "be normal" and beating myself up internally for falling short. I was able to forgive myself, and allow myself to stop trying so damn hard to "be normal". I think that one important thing that the broad diagnostic-manual labels can do, is to help us find fellow-travelers — and doing so can be quite important and constructive. As Donna Williams says, "normal" is to be in the company of others like oneself. It's easier to relate to others who share significant elements of experience with you.

T.T.

I was very young when my mom received the diagnosis. I know she felt overwhelmed and was told to put me in a home for the retarded; she refused and I was able to live at home. She struggled to communicate with me and I used my behavior a lot to get what I wanted. I think if I had been in an institution I would have died. I know many people who lived at Brandon training school; they were tormented through silence and misunderstanding but, since its closure, have been able to embark on a new life with new freedom. I am grateful for the life I was given, but I do wish my mother had been more in tune with my needs growing up. Today she has resources; forty years ago she did not.

I enjoy reading about new advances in autism, but no one can truly understand it until you get inside my head and in my thoughts. I am thinking I should read the DSM-IV before commenting, so for now I will just say, individuality is present among us, so I get irritated with generalized statements.

S.R.

Assume that for me diagnosis meant very little. I was much too young to remember the initial effects of my diagnosis. Assume now awful people make assumptions based on my appearance as well as my diagnosis. I love people, and autism is not a sentence to solitary confinement.

S.S.

The downside to diagnosis is pre-judgment: foregone conclusions and outright prejudice. People treating you a particular way because of what they think they know, having heard the diagnostic label. People not understanding that one's strengths can be as much a part of an autism spectrum diagnosis as one's weaknesses.

I think that the most effective way to mitigate that downside is for all of us to work to change the public's perception of autism, and the "conventional wisdom" regarding how to respond to it. I think people should know about being on the autism spectrum as soon as possible in a developmentally appropriate manner. Fortunately, I was lucky in this regard because my parents used the word "autism" just like any other word. Therefore, by age 5, when my speech pretty much became typical after a period of being nonverbal, I knew I had this thing called "autism." We didn't know much about what it was, but it helped explain a lot of differences.

Ideally, there should be no need for a formal disclosure event, but rather, being on the autism spectrum with all of its characteristics should be freely discussed just as one might talk about hair or eye color.

Regrettably, many people don't find out about being on the autism spectrum this way. I have developed a four-step characteristic and strengths-based approach for telling people they have autism. Briefly, the procedure begins with examining one's own characteristics and ends with the realization that the set of characteristics we have been talking about is known as "autism" or "Aspergers." Some people may take only 15 minutes to reach this point while others may take months or even years.

As for the DSM-V, I would like to see the following inclusions for criteria:

  • Sensory issues
  • Differences in attention
  • Differences in movement

There should also be a way to look at amplitude or severity of the given criteria. At this point criteria seem to be either "on" or "off."

S.K.

I was less than 3 years old when I received my label of probable autism. I am hardly in a position to refer to it as "a relief" or unwelcome knowledge - that might be a question better asked my parents. As a child developing through the stages of life, a teenager, a young adult, and now a 31 year old with other labels and issues with which to deal, my opinions of my autism have undergone various phases of change. It has been viewed by me as anything ranging from a curse to a set of unique gifts.

As for the DSM-V and ASD, as a Psychology major and person on the spectrum, I frankly see no reason at all to include ASD in the Diagnostic Manual for Psychiatric Disorders any more than I would my cerebral palsy, apraxia, epilepsy, digestive disorders, multiple allergies and sensitivities, genius level intelligence and use of devices to communicate — to me the very word disorder equals chaos, and I don't find my autism to be a source of chaos. On the other hand, my anxiety disorder, PTSD, bipolar disorder and Intermittent Explosive Disorder are all truly chaotic and thus excellent examples of what I believe belongs in the DSM, and I haven't any problem whatsoever with them being there!

K.S.

When an autistic person grows up, they have all sorts of labels attached to them. Some of them are official labels, which may or may not be accurate. Things like autism, IQ scores, ADHD, mental health labels, other neurological labels, physical labels. All sorts. We also grow up with non-official labels, like lazy, like weird, like nutball or freak, like that spacy smart girl, like Doesn't Play Well With Others.

If you grow up knowing you're autistic, and no longer look like an autistic child as an adult — and most of us don't, what with the whole being adults thing — then we may need to be rediscovered. People may have decided we were un-autistic for reasons like learning to talk or for making it through somewhat standard school programs. Then as adults, we find out that our current social and sensory differences are the same thing as the playing alone and lining things up and communicating differently as kids: Autism.

So we have a reason, right? This is awesome! We aren't just making it up! We should be able to get what we need from services! It should be a golden ticket to accommodations, ADA compliance, accessibility, and universal acceptance.

Right. On some other planet. Because you still have those other labels stuck on you. The ones that say "lazy" and "excuse maker." Even if the autism diagnosis has been there since you were little-little and was covered over, because other people decided that they'd rather see you as weird and not trying, those are still what people see. Those are the diagnoses you have to live with, because that's what people see, or choose to see.

Self-knowledge is kind of awesome, sure. But there's something that's bone-deep to the soul frustrating about knowing what you do, why you do it, explaining it when people stare or tell you to act fucking normal, and then having them, for the 2500th time, tell you to prove it. Diagnosis SHOULD be a relief, an explanation, not seen as yet another excuse by lazy people, or a reason given by socially awkward people to excuse being a jackass. When I choose to be a jerk, you will know. It will be blazingly obvious.

The DSM-V has needed to include sensory issues since autism was introduced to the DSMs. Acknowledge that our brains work differently. Acknowledge that what you call "stims" aren't purposeless. They have uses for us. Even if you don't get it, there are reasons for what we do. I don't get why you do what you do, but I don't assume it's without reason. Acknowledge that we grow up. Acknowledge that as we grow, we develop and change. A 3 year-old autistic isn't the same as a 30 year old. Accept, allow, and acknowledge that we are different from each other, as much as you differ from each other.

Finally, rather than worrying about shoving us in the right box, autism or Aspergers or PDD NOS, please, acknowledge we are alike. When we are adults you won't necessarily be able to tell us apart. We're autistic. Defining a 'better' kind of autism does a disservice to everyone. Stop. Doing. It. We're different from each other, but you can't quantify autism, and it's a disservice to all of us to try.

A.B.

Nobody told me what my diagnosis meant. In my own eyes, I was just a miserable failure. When I read about autism from the outside, the descriptions were foreign to me because they only contained people's guesses as to what we might feel. And I was not like any of the guesses. I remember sitting in a mental institution in the same spot every day, and people telling me that I had no interest in communication with other people. They told me I was making no effort to socialize. I knew that I was making an effort, but they were not able to see it. I was not aware of what it was they were seeing. So people made a lot of judgments about me, both overestimating and underestimating me, and I had no idea why. When I read things by other autistic people, there was a deep familiarity. But that only came later. I never identified with the outward descriptions because I did not know what I looked like to others and I did not know what they believed about me. I only knew who I was, and that I was not those descriptions. Only the inward descriptions did anything for me.

I am not a fan of the DSM. I am also hugely not a fan of the proposed new system in the next DSM where they will judge a person as mild, moderate, or severe by dividing it into certain categories of social, communication, and repetitive behavior. These are not who we are. These will put similar people in different categories and different people in the same categories. It is no better than the current system and may be much, much worse. What happens if a person's traits vary from day to day, do they become mild and severe at the same time? What about the things autistic people actually notice, like our different perceptual processing and our difficulty connecting to our bodies? I don't see those things listed in the criteria. Nor do I see anything about receptive language, only expressive, even though many of us have trouble understanding words, including some who can produce words just fine. The DSM is going in the wrong direction as usual. It is not looking at who we are; it is looking at misinterpretations of our behavior. I don't know how it could be made better other than just dropping the whole severity issue. How can we measure the severity of autism if the so-called experts don't even know what autism is?

J.B.

Well, my autism was less a diagnosis than a discovery. For everyone I imagine, the journey must take both high and low roads that contribute to the last stop of realization that you are who you are. I do remember deeply, the knowledge made me feel relief in my formulation of no speech access and it was not because I was a crabby kid who made my family leave functions early. It was autism. Life was very simply treating my mind to experience what my brothers were. Hearts seem to be broken so much easier than my patterns of stims, but my journey has freed my fear of failing, zanily, because I truly feel my path was to prove people wrong about autism. So, just saying that you have autism in the neurological areas does not convey that you are not the owner of a heart or not kind or not beautiful. Diagnosis can tell others to move quickly to pattern good movement and to counsel fears, and different ways to communicate are to be attempted for complete language. It is all in how you believe in the belief of humanity to give this correct assistance.

E.S.

One widely held belief is that people on the spectrum are incapable of empathy and/or that they prefer to be left in their own world. Please respond to one or both of these claims.

S.K.

Does the fact that I believe both of these statements are convenient lies designed by, and for, people who have no understanding of autism qualify as a response or would you like more? I have more empathy than anyone needs, and it causes me distress at times, but it never causes me to withdraw from the world. As for preferring to be left in my "own world", I much prefer sharing my world and other people's worlds and am of the strong, and rather staunch, opinion that if we treated the one world we share with more respect and reverence we wouldn't be close to destroying our planet but would instead be actively finding ways to reverse the course of that destruction.

T.T.

I am autistic, but it does not mean I do not have feelings; in fact I would consider myself overly sensitive at times. I may not always show a reaction, but I am feeling, and I may seem uncaring to you, but if you were to ask me, I would type to you that I acknowledge your sadness or whatever feeling is at the core. I have difficult showing emotion through my face and body language, but I can express myself more effectively through my typed communication.

J.B.

Well, in thinking about this question, I must say that I am confident in that query of empathy. I think of it as almost a spiritual word that speaks to the ability of experiencing the true development of other and self-knowledge in those special opportunities we are presented with as children. I believe particularly for people like me who had no way to communicate and lived silently in a place where knowing one's self was what the dialogue included. For it is the understanding of those people who demonstrate the ideas of not teaching the normal material of education, but who teach the less understood idea of this evident truth. Do you understand? It is the sure importance that those who embrace the joy of true teaching to the many and various ways of taking information of thought to the processing of actual life. Before these kinds of assumptions of lack of empathy can be asserted, we must assume all have had the opportunity to communicate and demonstrate where one would make this assumption about autism and thought-work.

S.S.

Contrary to the myth that people on the autism spectrum lack emotions or empathy, those with autism do have feelings and may even feel others' emotions more strongly than non spectrum people. The misunderstanding may lie in that those of us with autism often don't "express" emotions in ways that non-spectrum persons expect.

As for empathy, what happens to me — as well as others I have talked with — is we often tend to "fuse" to another's emotion. Much in the same way a small child commonly reflects an adult's mood (good or bad) as if that emotion emanates from the youngster, the same may happen with many of us. When I feel a strong emotion that is out of context with the environment or situation, I have to look around to see if others may be having that emotion. For example, I may ask my wife, "Are you feeling anxious about something?" Often I will find out she is, and only then can I separate myself from her feeling and experience what is referred to as "empathy." Most non-spectrum people seem to experience empathy automatically. For me and a number of others on the autism spectrum, it requires cognitive work like I just described.

As for "being left in our own world," that seems to be another myth for me. I know many on the autism spectrum who enjoy the company of like-minded individuals in situations low in non-spectrum expectations. The task of engaging a "non spectrum emulator module" can be very draining for many with autism, and often this "emulator module" works quite imperfectly. Therefore, it may just be easier to greatly restrict social interaction for many of us. However, if you go into the places where autistic culture is in the majority, such as at an AutCom conference, or events that are autism-friendly, such as MAAP conferences or certain parts of ASA events, much interaction between individuals can be found. I suspect there is a lot of interaction at Autreat conferences as well, but having yet to attend one, I am not qualified to say.

S.R.

Assume I am capable of empathy. Staff and family will tell you that it may not be appropriate, that is, to an appropriate extreme. I will perseverate on something sad going on and allow it to make me depressed and anxious. I am extra sensitive to when people around me have personal problems even when they don't share with me, and I can let their problems become my most awful behavior problems. The assumption that autistics are incapable of empathy and prefer to be left alone is awful. We are human beings and feel every emotion; you may not see it in our faces for the connection between my brain and my body does not always allow for tears at the appropriate times, but all emotions are experienced.

K.S.

Here's the thing about empathizing with an "other"—someone has to be the "real," valid person in order to "other" the other person.

Because we live in a stratified, ableist, neurosocial-centric society, the majority, that is, middle to upper class white people of average to above average (but not too high!) intelligence and neurotypical behavior and social patterns are the "real" people with the neutral and normative point of view, according to society. According to the world we live in, how this person sees the world is how everyone should see the world, and how they empathize — how they take the perspective of another upper middle class, conventionally smartish, white guy is what the definition of empathy is based on.

This is, of course, not necessarily as it should be and is, in fact, a marginalizing and needlessly pathologizing view. The majority of people classified neurotypical can't take the perspective of autistic people any better than I can take their perspective. A rather frightening percentage of them seem unaware that they have this disability, instead framing this inability as "no reason" for the autistic person's feelings or actions.

These oh-so-empathetic NT carelessgivers are the people who you will see saying "my autistic child/sibling/person I resent with my whole being does XYZ for no reason, EXPLAIN IT, universal translator," without ever trying the action, or trying to look at the situation. Who has the theory of mind problem again? This isn't just an extremely insulting thing, to be informed that people like me do things just to piss off "real" people (oh, right, who's self centered again?), but it's also extremely frightening and indeed threatening because of the gross power imbalances. These same carelessgivers-I cannot bring myself to call someone who can't figure out that sensory overload sucks a caregiver-are the same people who insist that their thoughts and feelings about autism matter more than autistic peoples'. Why? I have theories. But I don't claim to read the neurotypical mind. I've got enough perspective-taking ability to know when I can't do it.

When I CAN do it is by knowing when things need to be changed to be more accessible for autistic people, when things just aren't going to work for certain kinds of autistic people. This is when those carelessgivers are most likely to tell me to go fornicate with a garden tool, because I don't look or sound like their autistic child/sibling/person they resent with their whole being, therefore how do I know? They can't take that person's perspective, so how can I? Theory of mind fail! I don't know what it is to be in anyone else's head, but I do know what it is to be autistic. I know what it is to have sensory issues. I know what it is to have spontaneous speech failures. Their inabilities are not my inabilities, just as their abilities are not my abilities. My ability to put myself in the place of other people who are wired somewhat like me does not exist just for their convenience, at their call only, like a tool (wait…what? Isn't that what they say about US? Uses others as a tool?) but is a fundamental aspect of my humanity. I can't turn it on or off, for that'd be turning on and off a fundamental part of my humanity: relating to people who are wired like I am.

As an autistic person, I don't want to be left "in my own world" (what does that cliché even mean?) but if the choice is that or being a universal translator and fundamental other, seen as alien and not a real person, I'll take the isolation, thanks. Failed empathy and perspective-taking I understand…but only if the other — the person who is other to me — acknowledges that they, not I, can be mistaken in interpreting my perspective.

A.B.

Empathy is in the eye of the beholder. I notice that non-autistic people don't understand autistic people any better than autistic people tend to understand non-autistic people. When we don't understand them, we are said to lack empathy, and when they don't understand us, it's still us who are said to lack empathy? How about just understanding that it is rare for someone to be able to easily empathize with someone vastly different than they are? And that they lack at least as much, if not more, empathy for us than we lack empathy for them. Then lack of empathy would cease to be considered an autistic trait and just be a human trait.

I don't understand what "in one's own world" means. I never have. Even when I have experiences that both non-autistic and autistic people would say is in my own world, I still don't understand. I used to think that being in your own world meant that an autistic person thought they were on Jupiter or something, back when I first heard of autism. No wonder I didn't think I was autistic, stuck here on planet earth as I am. I think that the words "in their own world" are probably a stock phrase taken from back when people could imagine that we were in some other world. People who knew me when I was a child have described me as being otherworldly. But I have always been rather firmly attached to this world, perhaps more attached than most people, who seem to have a cognitive hallucination that they walk around in that buffers them from the real world. I don't have many buffers; to me the world comes in in such great detail that it is hard for me to put the easy interpretations on it that most people use; the way they divide it into pieces and make it abstract is foreign to me. I find it easier to find detailed and intricate patterns of sensory information from the world around me than I find it to become abstracted from the real world and go into my head

the way most people seem to live there. I get so much information it hurts. And yet I'm the one said to be in my own world half the time. I will never understand it.

P.S.

I think the idea that autistic people don't have empathy is nonsense.

We may not express it the same way that people in the non-autistic majority do.

We may even differ vastly among our own population in the way we do so.

Some of us — but not all of us — experience it internally so intensely that we can't express it externally before the circuit-breakers trip, but that does not mean we don't have it.

I think the whole question of supposed deficits among autistic people in empathy, perspective-taking, and "theory of mind" is actually a privilege-of-the-majority issue. Here's why:

If you are dealing with someone more or less like yourself, all you have to do to demonstrate "successful perspective-taking," is to answer the question "What would I do in that other person's situation?" If you are part of a large majority that is more or less homogenous in its experience and expression of emotion, then for the most part that's all you'll ever be called upon to do; your reactions and judgment will be sufficiently close to those of most others that you'll encounter, and all you'll have to do is to view the other person's situation through your own eyes.

But if you are not part of that large majority — if your experience and expression of emotion is too different from those of the majority — then you have to answer a much harder question to be deemed competent in perspective-taking, "theory of mind," empathy, and so on. You have to answer the question "What would a person in the majority do in that other person's situation?". In other words, you have to have sufficient understanding of an experience and expression of emotion that is quite different from your own, as a starting point, when dealing with most others that you'll encounter. This amounts to a stark unevenness in the playing field, a built-in advantage for those in the majority. They get to solve a much easier problem in order to demonstrate competence than we do.

I actually think that the competence of most people — non-autistic as well as autistic — in perspective-taking, "theory of mind" skills, empathy, and so on, when dealing with people who experience and express emotion quite differently from themselves, is pretty mediocre; people tend to be much better able to answer the simpler question ("What would I do?") than the harder question ("What would someone who experiences and expresses emotion quite differently from me do?"). It really takes an exceptional ability to grasp experience quite different from your own, to excel at answering the harder question.

The big difference is that if you're in the non-autistic majority, all you need to get by, for the most part, is to be able to answer the simpler question. That's just not the case for those of us in the wings of the distribution rather than the hump. Those of us who succeed in navigating an overwhelmingly non-autistic world do so by tackling that harder question: "What would Joe Normal do?" — where Joe Normal is an abstraction we spend a lifetime building up and refining.

Let me offer a shorter answer to the second question: whether we "prefer to be left in [our] own world." I think the response to that question needs to be to unask the question (as in the famous Zen koan about the disciple who asks the master whether a dog has Buddha-nature). The question just doesn't make sense.

We are here in the same world as everyone else. We may relate to others in it differently than the non-autistic majority does, but that does not make us any less here. We may notice and focus our attention on different things in this same-world-as-yours than you do, but that does not mean that the things we focus on are any less here than the things you focus on. As an analogy, consider the divergence between Western and Eastern art: if there are human subjects in Western art, they are usually front and center, but in Eastern art, the human figures are quite often minor features of a canvas that is mostly landscape or other aspects of nature.

I think we seek the company of others in varying degrees, conditioned to a large extent by how much satisfaction we gain from having sought it. If we are lucky enough to find others with whom there is an intersection of interests through which we can begin to relate, connections flourish. If our attempts to relate are rebuffed often enough or harshly enough, we learn to cease attempting. This should come as no surprise. I don't think we are so different from the majority in those respects — only in what constitutes the intersection of interests and the modes of attempted relating.

I find myself drawn back to quoting Donna Williams, exactly as in the previous round: "normal" is to be in the company of others like oneself.

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Copyright (c) 2010 Emily Thornton Savarese



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