This is so weird... Autism group hates autistic people?

2010-11-23 18:57

So, there’s this “advocacy” group, called Autism Speaks. They are… weird.

See, here’s the thing. Lots of people are autistic. Some are pretty severely autistic. Some are only “mildly” autistic. Some of us (yes, I’m one of them) are actually pretty happy. Lemme qualify that. So far as I can tell, if I understand the word “happy” correctly, I’m happy. I can’t actually tell whether my experience of “happy” is what other people describe. But I find myself mostly feeling good, and thinking that the way things are for me is a pleasant way for things to be, which I don’t much want to change.

According to Autism Speaks, though, I’m the horrible Autistic Child that murdered the healthy, happy, child my parents really wanted.

No, really. You couldn’t make this stuff up. See this blog entry, Autism Speaks: Don’t Speak for Me for some background. Other people have commented on problems with Autism Speaks.

Here’s the thing. I’m all for research into finding out what causes autism, or treatments that might make life easier for autistic people. But I get a bit concerned when a huge and very rich charity is devoting its effort to lying about what it’s like to live with autism.

Look. I can understand the desire for a eugenics program. A good friend of mine was the fourth consecutive child born with cystic fibrosis in his family, and he regularly and actively advocated for more to be done to prevent people from giving birth to kids with CF, until CF killed him. I can see a case for that, because, see, you don’t find people who are happy with CF, and you don’t find people with CF who are making great contributions to society that wouldn’t be possible without CF.

Autism’s not like that. Lots of us are happy. Furthermore, we’re useful. Think how nice it would be to have access to a few people here and there who were congenitally resistant to herd mentality and carefully-worded appeals to emotion. Or people who were instinctively well-tuned for problem solving. And by and large, as long as you’re willing to, say, use words to tell us what you want us to know, we’re apparently pretty tolerable to live with.

Fundamentally, Autism Speaks is a group focused, not on helping autistic people, but on eliminating them. No thanks. I don’t need to be eliminated. Maybe I’m not the “healthy” child my parents might have wanted, but we seemed to get along okay by and large, and I think on the whole my father preferred a seven-year-old who could understand calculus to a hypothetical seven-year-old who wanted to watch football games.

If you have any doubts as to whether they really speak for autistic people, consider that they went out of their way to create misleading impressions of what caring for an autistic child is like for their “Autism Every Day” movie. Trying to create false impressions is not something that most autistic people are going to endorse or support. The entire point of communicating is to share useful information so people can make better choices.

If I have to choose between no one speaking for me, and a woman with her autistic child in her lap saying that the only reason she didn’t kill herself and the autistic child is that she cared what happened to the healthy child… I’ll take “no one”, thanks.

Peter Seebach

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Comment

  1. Hi Peter,

    Interesting blog post (found your site via a comp.lang.c post you made).

    I don’t have autism, however I do suffer from several types of mental illness so I’m used to being patronized and treated as if I am horribly damaged fundamentally on an emotional level.

    You are free to decide what sort of coping mechanisms work best for you, or even if you don’t want any. Autism Speaks has no right and demonstrates great arrogance in presuming to dictate to you how you live your life and feel about that.

    PS: I found your C page very useful. Do you plan to update it?

    Email replies welcome.

    Best wishes,
    Zach
    netrek@gmail.com

    Zachary Uram · 2010-12-05 00:37 · #

  2. As the parent to one, quite possibly two autistic children, I agree with everything you’ve said and hate Autism Speaks myself. Autism is just a part of one, quite possibly, both of my sons — just as their hair colors, eye colors and skin tones are. I still feel that they can, and will, make great contributions to society once they are of age. If this makes me the minority here, well, I am blissfully happy to be the minority.

    — Dani · 2012-11-18 17:28 · #

  3. I absolutely agree with you as well. There is an Autism Extravaganza in our area every year as well as the Autism Speaks walk. Autism Speaks hosts the Extravaganza, and all of the local advocacy groups are tied to Autism Speaks in one way or the other. My son and I used to go to these every year until the year they had gotten Temple Grandin to speak. We never heard anything negative through Autism Speaks up until then.

    The local mother they had to speak started speaking about how hard it is to be a mother of a child with autism, and how she can’t go anywhere are do anything because of her child’s behaviors. Her child was supposed to be high functioning. My son started writing in my notebook about how bad of a mother the woman must be. He wrote that it sounded to him like the mother hates her child. I agreed with him.

    When my son was diagnosed at 16 months of age, he was low-functioning. It was very difficult for us, but we got compliments from people when we were in public about how well behaved both of my toddlers were. I could take them in public because they were never treated any different than one another. They knew to not act up in public because they knew that if they didn’t I would take them home, and we were often at a place that they wanted to be at. I thought about how the mother must have not disciplined her child at all. I didn’t realize that I was not the only person that felt that way.

    When Temple Grandin got up to speak, she stated very early in the speech that the biggest problem with many parents of children with autism is how many of them refuse to discipline their children in any way shape or form, and that is why many of the children with autism act up in public. She also stated that the parents often spend too little time with their children with autism, and due to that, the parents did not know the triggers that make their children act up, and that leads to undesired behaviors.

    For us, I always knew the triggers, and the biggest one is that my son cannot deal with really crowded places. Instead of shopping at Wal-Mart, where it is super, super busy, we shop at K-Mart or Hastings, where it is relatively uncrowded and busy. Any place that is super loud, such as Mr. Gatti’s are places that we do not go. Instead, we go to Pizza Hut and then to the dime arcade, which is less crowded. This has always helped us, and is probably why my son has never acted in public.

    Dr. Grandin also spoke about how her mother was more like me. Having autism does not mean no discipline. Unfortunately, I have a lot of friends with children with autism, and it is about 50/50 with whose children act up. Those that are unruly are never disciplined and are allowed to act improperly in public. Those that are well behaved are disciplined, have a structured schedule, and are very, very happy children.

    Later, Dr. Grandin spoke how she dislikes Autism Speaks. She stated, “I have been listening to you talk about how all of your money goes to trying to find a cure for autism, when you should be spending the money on funding transition centers for children who have autism. Children with autism becomes adults with autism, and in order to be productive members of society, transition services are in great need.” I never thought about it that way.

    Needless to say, my son was enthralled with Dr. Grandin. He listened to every single word, and agreed whole-heartedly with her. He wrote in my book, “I don’t like that they are looking for a cure, but to have a cure means that the person is sick. I’m not sick. I’m autistic.”

    My son and I have not attended another autism walk for Autism Speaks, and we have not attended another Autism Extravaganza because the funds raised goes to autism speaks. Instead, we do fund raising for places like the Autism Society of America, who spend their funds on transition services for people with autism. Autism Speaks will never sit right with me again. Unfortunately, now we have no local association to go to as they are all tied to Autism Speaks and looking for a cure.

    Pamela N. Brown · 2012-11-21 12:10 · #

 
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