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December 17, 2011 / Amanda Forest Vivian

The Problem with Popular Autism Organizations (August 2009)

[My domain is expiring and I have a few really old really long things about disability on there so I figured I would trundle them on over. Apologies for using the r-word as a label, I’m not editing this just because I wouldn’t know where to stop.]

The problem with Autism Speaks and a lot of other popular autism organizations like Defeat Autism Now is first of all that they are really into the idea of a cure for autism. But autism is not like having a cold, it’s just something a person is, for better or worse. There are certain diets that some people say are good for autistic people, and certain teaching techniques are definitely helpful in getting autistic kids to learn to take better care of themselves and communicate. Sometimes kids can even learn to talk really well when they couldn’t before. But it’s pretty much been proven that a regular kid doesn’t just turn autistic because of getting a vaccination, which is something that a lot of people have claimed, and an autistic kid doesn’t ever turn normal because of any medicine or any food. Being autistic is not the same as being mentally retarded, but I think it is useful to think about the fact that you would never think you could stop a kid from being retarded by giving them a particular medical treatment or a particular food. You would just try to help them do as well as possible.

Autism is probably genetic and as organizations like Autism Speaks are slowly admitting that, they are becoming really into “gene therapy,” which if you couldn’t guess means genetic engineering and/or selective abortion so that autistic babies aren’t born. I guess your agreement or disagreement with this has to do with how you feel about genetic engineering in general. I would like to point out, though, that our culture has a irrationally negative view of what it is like to be disabled and whether disabled people are happy or leading “worthwhile lives.” For example, studies have shown that people with severe physical disabilities rate their quality of life as positively as non-disabled people rate their own quality of life. Also, it is widely believed (to the extent that many disability rights advocates consider it an offensive stereotype) that people with Down’s Syndrome are universally saintly and joyful, but despite this belief over 90% of fetuses with Down’s Syndrome are aborted. How does it make sense to believe that a group of people is unusually happy, while also believing such people are better off dead? I think that in our society we are not encouraged to value the lives of people with disabilities, but instead are encouraged to feel an illogical amount of pity for disabled people, a pity that may be masking discomfort and fear about people who are different or resentment of people who need extra help.

Besides the fact that they talk about “cures,” Autism Speaks and other popular organizations do not care about disability rights even though they are supposed to be helping people with a disability. Though many Autism Spectrum Disorder people can communicate in some way, these organizations don’t encourage them to do so, and they don’t include ASD people on their boards. Their boards are mostly made up of the parents of ASD people, and their advertising talks about how hard it is to have a kid who is autistic, not how hard it is to be a kid who is autistic. The focus on other people’s inconvenience and grief at having to live with a disabled person fits right in with our ableist society. Autism Speaks could reduce parents’ inconvenience by funding schools and in-home support for autistic kids, and they could push for legislation that would offer better services to kids with autism; but instead, they just talk about how inconvenient it is as if that inconvenience is caused by autism and not by a lack of services.

When disability rights advocates criticize these organizations for presenting autistic people as miserable burdens, the organizations often pull out a very peculiar argument. Despite the name, which would seem to imply variation, they act like Autism Spectrum Disorder is just two very different disorders that people happen to think are related for some reason. One disorder is Asperger’s, which makes a person sort of nerdy, but really smart and talented, and the other disorder is regular autism, which is completely horrible and means that a person can never talk, live semi-independently, or even be happy. People with Asperger’s don’t need to be cured, but people with autism do. The funny thing about this argument is that autism organizations never say this kind of thing except when they’re talking to disability rights advocates. Anyone who has worked with ASD people knows that some kids with a regular autism diagnosis can talk quite well, for example. I know a kid who is diagnosed with regular autism, who goes to a school specifically for kids with regular autism and has parents who are involved in a popular autism organization. His parents even put him in clothes that advertise the organization. He can talk just as well as I could at his age, and I have an AS diagnosis, but no one at the kid’s school ever acts like he shouldn’t be there just because he can talk. They understand that autism is a spectrum disorder, and the abilities of autistic people are all over the map. But if this kid grows up to be a disability rights advocate, organizations like the one his parents are involved in will probably try to claim that he doesn’t have regular autism, and doesn’t understand the situation of regular autistic people.

This argument also makes me uncomfortable because it seems to try to judge how meaningful a person’s life is based on how high their IQ is, not on how happy or fulfilled the person is. I read an piece by Alison Singer, the former vice president of Autism Speaks, in which she argues that the difference between Asperger’s and regular autism is so insurmountable that it is okay to say one needs to be cured and not the other. To make her point, she compares her classically autistic daughter to a young girl with Asperger’s who is a family friend. It seems obvious that the girl with Asperger’s has a hard life. She doesn’t have friends and is a challenge to her parents and teachers because of her violent, unpredictable behavior. Singer has appeared in a video where she describes how hard it is to have a daughter who has tantrums and might attack people; but in this piece, she claims not to see any common traits between her daughter and the AS girl. She emphasizes the fact that her daughter struggles to use any words, while the AS girl is a talented writer. Somehow, Singer seems to think that the other girl’s ASD is okay because the girl is able to be a good writer, but Singer’s daughter’s ASD is not okay because, as Singer puts it, her daughter “has no skills.”

But judging by the information in the piece, it seems to me that both girls are unhappy. Singer’s conclusion that one of them has a more valuable life is based on something parents care about more than kids do–academic and intellectual achievement. You’d have to ask the talented AS girl whether she thought being a good writer was enough to make her life worthwhile when she couldn’t make any friends. Lots of talented artists and scientists have lived extremely unhappy lives and might say, if you asked them, that they would rather not have lived at all. You can’t ask Singer’s daughter whether she feels her life is worthwhile, whether a love of food or colors or her family is so intense that it makes more of an impression on her than not being able to communicate her feelings to others. I hold this truth to be self-evident: you can’t just decide, especially based on academic skills, whether a person is better off existing or not existing.

And also, instituting a dichotomy between verbal and nonverbal ASD people is an awfully convenient way of silencing people who say “I have an ASD and I’m happy to be alive.” Well of course you’re happy to be alive, you can talk, and talking is a reason to be happy. If someone isn’t talking they’re not happy. It’s much easier to assume that if someone requires a lot of services, or makes you uncomfortable, they aren’t happy; then you can just work on figuring out how to make them disappear, because its for their own good anyway. If you apply the knowledge that most verbal disabled people are reasonably happy to be alive, which would seem to indicate that the same is true for nonverbal disabled people, you have to figure out the best way for those people to be fulfilled and be a part of society, which means challenging your prejudice, which is hard. But really, I think that is the moral and logical thing to do and it is the thing that popular autism organizations are not doing. While they are well-meaning, they operate from an extremely ableist viewpoint that they have shown little interest in trying to improve.

I am an ASD person who is happy to be alive. It is not true that my Asperger’s makes me especially talented at things, and the fact that I can talk doesn’t erase how miserable I have been when I felt guilt and shame about being disabled, or when other people treated me badly or treated me as a burden. In fact most of my “talents” evolved from compulsive escapes and although they are a part of my happiness they are not the reason for it. I just happen to be happy, and for most happy people I tend to think this is the case.

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3 Comments

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  1. krissy / Apr 9 2012 12:44 am

    Autism Speaks was starting with funds from Home Depot CEO Bernard Marcus. He is out to get unions and poor people. I suspect he wants to eradicate autism to either make more union busting scabs and minimum wage slaves but also because he wants to get rid of what he calls “imbecile” protestors. He is obsessed with increasing productivity in the american worker even though its at its highest point in years, and its a shame that at the Home Depot productivity is not met with raises, promotions, vacations or holidays. Yuck.

  2. tagAught / Jan 25 2013 4:59 pm

    An excellent summation of the issues with organizations that *don’t include us*. “Nothing About Us Without Us” isn’t just words; it’s the way things *should be*. We don’t have to ask that, oh, writers’ organizations have actual *writers* on the board and in the membership; why should we have to do that with autism organizations? Yes, I know one is a “skill” and the other is a “disability” – but that doesn’t matter. Not at the core.

    Writers’ organizations are about writers; about teaching them further skills, about supporting each other, about advocating for each other. Autism organizations are *meant to be* about support for autistics, teaching them the skills they need to survive in the world it is, and advocating for autistics. Why do people see them as so different? The goals are meant to be the same: support, learning and advocating for their membership. But people who aren’t autistics don’t necessarily know or understand what *kinds* of support and / or advocacy – and / or even learning – are needed by autistics; the same way that people who aren’t writers don’t know what kind of supports, learning, and / or advocacy *they* need.

    People don’t have the right to decide for others how they should live their lives. Yes, parents do with children – but only up to a certain point. Why do these people believe that just because some autistics can’t communicate in a way they understand – partially because they don’t *try* to understand – that they have the right to decide what the autistic person’s life should be like?

    And I’m tired, and getting into ranting mode, and that’s not good, because I babble and lose my train of thought. So I’m closing off here.

    Like I said, it’s an excellent summation, and should be required reading for anyone interested in supporting disability organizations.

    šŸ˜ tagAught

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