Misrepresentation within the Autism Community

This is a very exciting time in the world of Autism… more and more, autistics are finding ways to have their voice heard, or give voices to those that have had no voice before. With the improvements in text to speech technology, the rapid increase in iPad apps and just general understanding in general… it’s amazing what people can do when they know what to look for.

However, this has also lead to some very heated emotions. People are getting very frustrated with each other.

Misrepresentation

John Elder Robison wrote : As the autism spectrum expands to encompass more people with progressively greater verbal and written communication skills, those individuals have begun speaking for themselves.  By doing so, they are altering the public’s perception of what or who an autistic person is or may become.
From:  http://jerobison.blogspot.com/2012/01/looking-forward-at-autism-spectrum.html

What he is saying is that Autism used to define a disability that left people speechless, unable to live an independent life of their own… but now, as it continues to expand, it grows to include people that are able to live independently. And that those people are advocating for Autism and giving people the wrong impression of what Autism truly looks like (intentionally or not).

Then there are those who are frustrated with people insinuating that only the verbal, independent living autistics are able to speak up… that all this time, those non-verbal autistics living with their parents or in a home were unable to advocate for themselves but would have if they could have.

Or that maybe those people that you are reading or hearing from actually are not verbal at all or living independently… even though you may have thought they were just because they are speaking out.

There are several autistics that are unable to speak or live independently and they are blogging, writing books, attending conventions and many other things, to speak on behalf of themself as well as others on the spectrum.

A great post on this: http://autistichoya.blogspot.com/2012/01/tired.html

Further still, there are those out there, parents and some professionals mostly, who maintain that while it is great that there are some who can live on their own and others who can perform these self advocacy tasks despite their verbal limitations…. that Autism is still very much a life destroying disability that renders a person a much lesser person than what they would have been otherwise.

These people feel that those attending the conventions, writing the books and otherwise “speaking up” are misrepresenting those that can not do those things. They feel they are giving people the wrong impression since there are so many that hurt themselves or others, that will never learn to read or write or speak and most certainly will never have a voice to self advocate with.

Is it really misrepresentation?

So who is right when there are so many conflicting thoughts? Who is right when people are so mad at each other that they actually get upset at the things they say?

This is simply my opinion, I wouldn’t say that you have to see things my way if you don’t want to… but I’d label all three parties as being right.

It’s not really misrepresentation when all three people are representing their particular view of the spectrum appropriately.

It is a spectrum after all and as such, there really are people who can live independently and speak perfectly fine, as well as those that can’t live independently but are still able to voice their experiences and opinions in alternate ways and then there actually are those who will never be able to do any of those things.

None of them are wrong…. except maybe in their effort to shut each other out or to try to convince others that their own view point is the only viable one that others must share.

disagreementThe true misrepresentation

So if none of the referenced parties are misrepresenting the Autism spectrum and/or autistics… then they all are. Their efforts to make people think that all autistics either have a voice or don’t… their efforts to make people think that all autistics have a voice… and their efforts to make people think that all autistics lack a voice or unable to speak for each other.

Autistics have the most important voice in the Autism community, some may feel that is debatable, but it is certainly how I feel. I mean, who knows about a topic better than the people who live it?

I think it’s everyone’s goal (at least I hope it is) that every person with Autism can be a self advocate… that every child/person will be able to speak up, should they choose to, in what ever way they choose to, to advocate for themselves.

I applaud those that speak up. It’s not an easy thing to do no matter who you are.

My only suggestion, take it or leave it, is to speak together… not against each other.

Don’t dismiss a self advocate because you feel their experiences and opinions don’t represent your child or your view…. one day that may actually be your child that someone else is dismissing and that will hurt you even more.

Don’t dismiss the person living with Autism in their lives who feels their situation doesn’t mesh with yours. Chances are, it really doesn’t. Maybe their child is just fine while you advocate for ideals that don’t match up, or maybe their child never will find a voice in any manner or form and your voice only reminds them of that fact.

It is no one’s intention to hurt each other or to misrepresent each other… it is everyone’s intention to educate and inform the people that have no idea either which way.

Yes, there are some advocates that are simply wrong in the things they say. They spread misinformation and speak contrary to facts. But there are times when two parties can be right at the same time and yet wrong at the same time for trying to make people think that the other party is wrong when what they need to do is speak together.

We must educate each other, since we’re all obviously missing some essential pieces of the pie. We have to work together for that to happen. Not against each other. Only then will any of us truly qualify to try to educate everyone else.

I would love to hear from you. Can we all work together? Will it ever happen?

About Stuart Duncan

My name is Stuart Duncan, creator of http://www.stuartduncan.name. My oldest son (Cameron) has Autism while my younger son (Tyler) does not. I am a work from home web developer with a background in radio. I do my very best to stay educated and do what ever is necessary to ensure my children have the tools they need to thrive. I share my stories and experiences in an effort to further grow and strengthen the online Autism community and to promote Autism Understanding and Acceptance.

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7 Responses to Misrepresentation within the Autism Community

  1. Naomi January 14, 2012 at 11:08 am #

    I think that the spectrum is so diverse, and encompasses so much. I also think that each of us within it, whether we are on spectrum or loving someone on spectrum, see our version with a pretty narrow focus. Our problems are the most important, because we work daily to live with them, to reach some kind of balance.

    Forms of autism are so diverse that we cannot say to each other “yes, I know exactly what you are talking about.” My more verbal son says “I have medium autism and Nathan has extra autism.” And he asks me why Nathan bites him and rages. Even though they are brothers and both have autism does not give them a key to complete understanding.

    As a community we need to fight for more acceptance and more knowledge of what autism is. We need to improve quality of life for all of us. For all of us this means increasing tolerance and improving skills on both sides. For some of us this means this means treating disorders that are making things worse. Our community needs to address people who do not understand autism, and provide support for our fellows.

    Autism is not there to be cured. It is part of the makeup of individuals. And we each need to adjust to accommodate each other.

  2. Michael Forbes Wilcox January 14, 2012 at 11:47 am #

    Nicely done, Stuart.

    It is essential that we all continue to have this dialog. Each of us is entitled to our own opinion, and it is only by discussing our differences that we will learn and grow and move toward consensus.

    During this process, it is my hope that everyone will be respectful. In the end, I think we each and all want the same thing, which is that every person gets to live life to its fullest, within their abilities and interests.

    That said, let me get in my own picky points and opinions. When you say “maybe those people that you are reading or hearing from actually are not verbal” you are contradicting yourself. The word “verbal” means “of or pertaining to words” — so anyone who can write is, by definition, verbal. Even people who can’t write or speak may be verbal, in that they comprehend words, either written or spoken.

    I am hoping the expression “person with autism” will soon go the way of the dinosaur. I realize that people who use this phrase mean it to be respectful, but most self-advocates prefer to be called autistic. Although we lag by quite a bit, since blind people and deaf people have been speaking up for longer, as more and more autistic people express their opinion, it will become less respectful to use the “with autism” form.

    Finally, I am writing an essay on why I dislike associating the word “spectrum” with autism. Autism is not something you can have more or less of, in my view. Yes, there are different forms of autism, and I think of these forms as being stars in a constellation. Autistics all have much in common with each other. The way we process information, for example, is much different from the way non-autistics do. We also tend to have very different sensory sensitivities. More anon.

    Thank you for your contribution to this conversation!

  3. Stephanie Hackney January 14, 2012 at 1:03 pm #

    I have enjoyed reading the article and the comments. I am not autistic, nor do I have an autistic child. In fact, we do not have even one autistic person in our extended family. I am, however, very interested in the topic and in the lievs of those who are autistic. Having studied the topic extensively while going for certification for working with those with special needs, including those who are autistic, I believe I have a fair understanding of autism. Mainly, I strive to learn more…daily. The insight you all provide is hugely helpful for those of us who want to learn more.

    It is sad to me that people often don’t allow for a difference of opinion, whether that be about politics or autism, or a myriad of other topics about which people can get so heated. Just because our opinions differ, that does not make one of us right and one wrong. My goal is always to hear the others’ point of view and to try and understand where they are coming from. Whether or not I will agree with their point of view or beliefs is beside the point. The point is to learn and grow, and to always be accepting of others’ views. At the very leats, to listen without judging.

    I can in no way ever understand what an autistic person goes through in life, nor can I ever understand what it’s like for their parents, siblings, families and friends. But, I do my best to learn from them all. And, I thank all of you for what you share.

    Please continue to share your thoughts, your experiences, your ideas…whether or not others agree with them.

  4. jason nolan January 15, 2012 at 8:53 am #

    As an autistic adult, as someone who knows a number of autistic adults, and who has some contact with non-verbal autistic children, I think the approach to be inclusive across the spectrum while acknowledging the diversity at all levels is key.

    The assumption that people like me ‘aren’t really autistic’ because of what I can do–all the things one needs to pass in society–denies me the core of how I make sense of the world, which is as an autistic person. For someone who is non-verbal or who cannot function independently, there is a different set of challenges to their identity and autonomy as individuals. Strangely enough, and many people at both ends miss this, I don’t think that any autistic individual functions independently in society. I’ve built my own social support network, on top of the institutional disability accommodation that took decades to put into place. I don’t see why there is a problem with acknowledging that people with different needs than mine also need this long term support.

    We’re diverse how others see us and our needs, but from the inside I actually don’t see much difference between myself as an outwardly social, employed, apparently self-supporting academic and a non-verbal child who is unable to complete the most basic functions without sustained support. I was lucky enough to figure a way out through which I became able to interact with the world, and I found I wanted to do it. Hopefully I can help others make some level of transition. Others may not be able to find a path to successful engagement with the non-autistic world. I haven’t, and the DSM-V changes in the designation of what counts as autistic, seen much difference between the high or low functioning autistic person, at a core level, just a difference in terms of how successful we are in engaging with them.

    I know that there is a lot to be learned. Higher functioning (versus high functioning) need to engage with and learn from lower functioning autistics, just as the lower can learn from the higher.

    It was amazing the almost immediate bond and understanding that seemed to pass between me and some of the children I’ve interacted with in classrooms. It was like they somehow could sense the similarities between us, and acted different around me. I just saw what they were doing as making perfectly good sense, from my perspective.

  5. Springingtiger January 15, 2012 at 1:19 pm #

    I agree with Jason Nolan. Personally I find that “high” functioning can vanish in a crowd or on exposure to emergency sirens, much of our experience is shared with -so called – low functioning autistics. I also believe that there are many who may now appear “low functioning” who simply have not yet been given the key to unlock their communication.

    Parents, professionals, and autistics all are entitled to their opinion and if we can express it we are entitled to be listened to.

  6. Kassiane January 16, 2012 at 3:23 pm #

    it IS misrepresentation when people say “you can do X, therefore obviously you can do Y, therefore you aren’t autistic enough so STFU”.

    *has been doing this for 13 years, and has heard more versions of that than she cares to count*

  7. Liane Holliday Willey January 19, 2012 at 2:02 pm #

    I wholeheartedly support your thesis and your point of view, Stuart! Few things upset me more than one community splitting into factions that create diversion from the big picture, which as I see it in regards to autism (and most ever other aspect of humanity) is this: respect and appreciate every individuals right to express his or her differences in ways that make sense to the individual. I see parts of my Asperger syndrome as disabilities, others as finely tuned hyperabilities, still others as nothing much to talk about either way. I have the right to see ME as I wish to see ME and no one should assume my discussion of my ASD implies their own viison of their life is affected. Each time I discuss ASD I make sure to say ‘this is my story’ or ‘these are SOME strategies other people with ASD MIGHT benefit from employing’. I know we get caught in semantics, but the aruging and shouting against one another and within our community is very very sad to me. So, thanks Stuart for such a well put essay!!

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