Tuesday, November 1, 2011

Autistics Speaking Day : Listen to the Silence

Today, November 1st, is "Autistics Speaking Day" and is supposed to be a day where people with autism tell the world what it is like to live with autism.  Today is supposed to be a day to raise awareness and acceptance of autism, to battle negative stereotypes about autism, and to advocate for the inclusion of "autistic" people in the community.  All of these things are laudable goals.

But today, in my ever so humble opinion, should not be remembered only for the voices that you do hear, but also for the voices that you don't.  Today, the voices you won't hear is the overwhelming majority of people with autism because autism has taken their ability to communicate.

There are no solid figures available, but by all accounts almost half of all people with autism never learn to talk.  Another ten to thirty percent will have rudimentary use of language but would not be able to carry on a typical conversation.  It is only a minority of people with autism who have the ability to communicate effectively with the world.  It is only the minority who are able to function in the world in spite of their autism.

So today, you will hear about the experiences and needs of a very vocal minority of people with autism.  And while these people do have worthwhile and important things to say, let's not forget that they tend not to speak for the needs of the silent majority.  In their rush to declare that autism is just a "difference" or a neurological diversity that needs acceptance rather than a cure, this group of vocal "autistics" tends to marginalize and ignore the needs of those who are profoundly disabled by their autism.

So today, while you are listening to the voices of the "autistics", don't forget to listen to the silence from the majority of people with autism who are unable to talk for themselves.


  1. There's an old saying Shallow brooks are noisy which describes autism speaking day to a tea.

  2. They certainly are noisy. I don't think I have had that many angry tweets heading my way in a long time.

  3. Completely agree. I have been mulling over this very thing lately. Do you mind if I link to this post on my blog MJ?

  4. Keep in mind, many of this "high functioning" minority were much less so as children, and many still have difficulty communicating verbally off the internet. There's more continuity between them and nonverbal children than you might think.

    Also, keep in mind that however different this highly verbal group may seem from nonverbal people with autism, they do have the same underlying disorder, and thus are more likely to understand what nonverbal people experience than someone who doesn't even have the same condition. So if you reject attempts of high-functioning people with autism to speak for "autistic people in general," you should reject twice as vociferously the attempt of non-autistic parents, professionals, researchers, and charitable organization spokespeople who do so.

  5. You know the best people to speak for these autistics? Autistic assistive communication users, such as Amanda Baggs.

  6. Hi Emily,

    Maybe I said it badly, but I wasn't talking strictly about verbal ability. The point I was going for was more about functional communication skills in general. A large number of people with autism - I would say the majority - have significant trouble with communication in general. Even in those people who can talk, there is still a significant impairment in the ability to effectively communication. I know some people with autism who, while they can talk perfectly well, are unable to have a conversation because the other two part of autism get in the way.

    So I am not so sure that the "high-functioning" self advocates really do have the same underlying disorder. And, even if they do, there is a clearly a significant difference in terms of impairment. I know that isn't considered PC thing to say by these advocates but that doesn't change the fact that is seems to be true.

    The whole idea behind a self advocate speaking for other people with autism is because they understand what it is like to have autism. But if their impairments are substantially less than other people with autism, can they really speak for the more impaired? To me that would be like a person who was impaired vision that is correctable by glasses speaking for what a completely blind person needs. Yes, it is similar but it is also completely different at the same time.

    But, for the sake of argument, lets assume that the impairment is the same and that they are able to understand what the more disabled person is going through. Do you think it is right for these advocates to try and deny access to medically appropriate treatments and services?

    Dr. Mottron was recently quoted as saying "Ms. Dawson and other individuals with autism have convinced him that more than anything, people with autism "need opportunities, [and] frequently support, but rarely treatment."

    That is the end game for many advocates - social change and supports but no "treatments". Are you comfortable with that outcome?

    I am not.

    As for rejecting other people speaking for people with autism, I have to strongly disagree with you there. As a parent it is not only my responsibility it is my moral obligation to do what is in the best interests of my children. My wife and I are the only people in the world who are going to stand up and fight for exactly what my children need. I can't necessarily speak for what people in with autism need in general but I certainly have the ability to speak for my experiences with autism.

  7. Ettina,

    In my opinion, Amanda Baggs is a terrible spokesperson. There are enough problems with her own accounts of her life that I simply don't believe what she writes.

    For example, she has written in the past about not only functioning in school but being in a class for gifted individuals. While you clearly can be intelligent and have autism, I doubt that many people with autism - especially ones that are more disabled by their autism - would be able to function in a gifted classroom. I believe she also left school to go to college early and, if memory serves, functioned relatively well there until she had some sort of episode.

    Perhaps more importantly, her inability to speak doesn't seem to be related to her autism. By her own accounts, she was completely verbal up until her late teens or perhaps early twenties when she "lost" the ability to talk. That profile of development is completely different than children who are never able to talk or lose the ability to talk within months after acquiring it.

    Amanda Baggs clearly does have problems that she is dealing with but I don't think that low functioning autism is one of them.

  8. I don't see why there has to be a monolithic 'autism movement' headed in a single direction. What high functioning autistics have in common with all autistics is perceiving the world in a way that nonautistics don't understand. To me it seems useful (to all humanity) to share insight into their ways of seeing things, and spread awareness that there are different ways of seeing things that are equally valid. Opportunities, easing of depression, and contributions to society would naturally follow.

    That oughtn't diminish efforts to help autistics with GI problems or comorbid conditions causing learning difficulties. As I said, I think Michelle Dawson's only objection to ABA is that it lacks a scientific base. The Mottron team or the neurodiversity movement don't wish for people not to be helped as much as they legitimately can be. They wish for 'help' to be accurately defined rather than assumed and forced. Researching ways to make autistics' lives better is important to everyone.

  9. Michelle Dawson's claim that there isn't enoug science to justify ABA is so off base it's laughable. The benefits of ABA are well documented. Is the science perfect? No. It cannot be. Randomized, controlled, double blind studies are impossible in measuring outcomes of behavioral therapy on autistic individuals. You cannot do it. Does not change that in controlled studies, over and over again, there has been a significant difference in outcomes for those who have recieved ABA versus those who have had a much less intensive community support kind of approach.

    All the while, she has failed to demonstrate what is harmful about ABA. She speaks out about punishment- but admits it is no longer part of any mainstream ABA program. She speaks out about how treatment itself perpetuates a harmful, negative view of autism- but the mere aim to correct disadvantageous behaviors cannot be viewed as "being negative." Then she seems to imply that ABA therapists and parents violate the rights of ASD individuals by superceding their will, ignoring the fact that children are under the care of their parents and it is completely appropriate for parents to "make" a child do something; and ignoring the fact when an adult is profoundly disabled, sometimes someone else needs to decide what is in their best interest. It is not infantalizing or dehumanizing- it's just the way it has to be sometimes. Ideally all adults would be super capable of everything and get to make all their own decisions because they can live independently without support. Reality is something different, however.

  10. I think the root objection to ABA is an instinctive one shared by all autistics. When you allow them to be, they feel better than when you force something onto them. This is something that nonautistics cannot relate to because it concerns the fundamental difference in perception of stimuli. This is why we need autistics talking for autistics. It is simply impossible to say what is 'better' for another person unless you can see, to some extent, from their perspective.

  11. "When you allow them to be, they feel better than when you force something onto them."

    You misunderstand the nature of what ABA is and how it is used.

    ABA isn't about "forcing" behaviors on a person, it is about using appropriate teaching techniques to get the lesson through to the person.

    It is also about looking at behaviors, trying to figure out why they are there, and coming up with an appropriate method of dealing with them.

    For example, if your child is throwing massive temper tantrums in public at seemingly random times and places, it is nice to be able to have a way of figuring what what is bothering them.

    Unlike the "conventional" wisdom, ABA is rarely used to make a child look or act "normal". In a typical child with autism, there are far too many functional issues to deal with to worry about something as trivial as acting normal.

    Besides which, the idea that a parent shouldn't be "forcing" any ideas on a child - typical or not - is just silly. It is a parent's job to teach their child what is appropriate and to give them the skills they need to navigate the world on their own when they get older.

    I'm sure most kids would feel better doing what they want rather than what their parent's want them to do. But it would be a terrible parent that let them get away with it.

    As for your last point, understanding their perspective, let me just say that parents of children on the spectrum (sometimes) understand their children far better than you would think. It is a skill you have to learn because the consequences for you and the child can be rather severe if you don't.

    Think of it this way. While parents are using ABA on their children, the child is engaging in their own form of ABA on the parent. If the parent can't put themselves in their child's place and understand how their child will view the situation and so limit exposure to overwhelming stimuli or situations, the child provides negative reinforcement in the form of an autistic temper tantrum.

    After the first couple of times you go through one of those, you start learning what sets your child off and how to avoid the situations if possible. If your child is nonverbal, you also start learning how to read all of the very subtle body language that will give you a clue to what they are thinking.