Whose Planet Is It Anyway?

Saturday, March 03, 2007

Mixed Signals

And now for something completely different.

Instead of the usual cabal of evil eugenicists plotting to wipe autistics off the planet, we have kindhearted state legislators who apparently want to help us reproduce. Yes, really. Take a look at New Jersey's Senate Bill 690, which has been approved by the New Jersey Senate Health and Human Services Committee:

The purpose of the initiative shall be to provide vocational, educational and social training services to persons with Asperger's Syndrome, through community-based service sites, which offer these individuals appropriate support, guidance and education to enable them to: further their education, achieve gainful employment, develop meaningful friendships, and become broadly competent adults who are able to lead fulfilling lives.

What a nice bunch of senators. They want to help us go to college, get good jobs, and even improve our friendships and (presumably) our love lives. If they keep on this way, they might even start believing we're human.

More seriously, this bill does seem to be part of a genuine effort to integrate autistics into mainstream society, even though its language is ridiculously paternalistic (and contains some inappropriate references to "suffering" and "psychosis"). Ari Ne’eman of the Autistic Self Advocacy Network was invited to present testimony at a hearing on the bill, which is definitely a good sign; at the very least, it is an acknowledgment that autistic citizens are entitled to a voice in their own government, just like everyone else.

Still, this legislation is seriously flawed because its approach is based on guesswork, not fact. More specifically, it is based on a relatively recent hypothesis that has not been conclusively established—the idea that autistics lack the ability to understand body language and other nonverbal social signals. Scientific research in this area is still in its infancy. We don't yet know why there are differences in social behavior between autistics and non-autistics, and we don't fully understand the nature and extent of these differences.

In a discussion on my blog not too long ago, Phil Schwarz posted a link to a comment he wrote on another website, in which he hypothesized that the social advantages of non-autistics may simply be a consequence of their status as the majority population. It's possible that autistics can read the body language and social signals of other autistics just fine, but because we are such a small minority, maybe we don't spend enough time around other autistics for that ability to be noticed. Likewise, non-autistics may be just as clueless (or even more so) at reading our body language as we are at reading theirs. For all we know, the human species may be divided into several naturally occurring social subgroups, each with its own genetically determined style of social interaction.

This isn't just an abstract discussion of various possible permutations of social behavior. It has real-life ramifications. If there is only one type of nonverbal social signaling that goes on among humans, and non-autistics know it instinctively while autistics do not, then the proper course of action may well be what New Jersey is doing: Provide social skills training to help autistics cope with an innate lack of social ability. But if, instead, there are different kinds of nonverbal social behavior that come naturally to different kinds of people, then we shouldn't be declaring the majority's form of social interaction to be superior to all others. Rather than sending the autistics off to social skills classes for training in how to behave like non-autistics, we should be sending everyone to neurodiversity seminars to teach them that it's OK for human beings to have natural differences in social behavior.

With so much prejudice out there, and so many unfounded assumptions and unproven hypotheses floating around, governments shouldn't be creating major new autism policy initiatives based on anything that hasn't been thoroughly researched and shown to be scientifically accurate. Given the current woeful state of the science, that means we should proceed with extreme caution when making any policy decisions concerning autism.

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  • Re: Differences in socialisation.

    I think there are definitely differences in the way people socialize, from non-verbal to verbal expression.

    I see similarities in non-verbal behaviour among the autistic children I work with. I, myself, am more comfortable among autistic people than I am among neurotypical people. (Well, except for my best friend, but we've known each other for years & years, and we understand one another.)

    I had the pleasure last month of reconnecting with an old friend from high school. It was quite amazing to find that we actually communicate in the same way. It is a communication style that is rarely welcomed by other people - they tend to see my sharing of stories and lack of questioning as self-centredness - but because this person communicates in the same way, we were able to have a wonderful day together and share many interesting stories. (My communication style is more to tell stories and answer questions; I do best if the other person also tells stories and answers questions, because then I can ask questions that really matter.)

    Knowing how great that made me feel, I think it is incredibly important that everyone seek out those who communicate in ways similar to their natural communication style. I would imagine that in the past, when people grew up in the same town and married people from that town, there was not this difficulty we have now in finding people who communicate the same way.

    I think I'm getting a little convoluted now, so I'll stop. But thanks for the post; something to think about.

    By Blogger Jannalou, at 12:38 PM  

  • I guess I disagree with you on this one (I think this is a first).

    Making laws, like making sausage, is a messy process. And you don't always get exactly what you want.

    There's a lot to like about this law. It raises awareness of all autistics, involves autistics in the process, and has some noble goals. Yes, there are things not to like, as you've pointed out. My biggest gripe with the bill is that it is narrowly written, and applies just to those with a diagnosis of Asperger's syndrome. This totally excludes those with classical autism and PDD-NOS, like my son.

    But I'd much rather have what I consider a good start than nothing at all. Waiting for everything to be thoroughly researched and scientifically validated means that nothing would be done in the meantime.

    I say take the approach Franklin D. Roosevelt took to the New Deal. He said he would try something, and if it didn't work, get rid of it and try something else.

    My hope is that this bill could be expanded upon in the future. All autistics (as well as others with disabilities that could benefit) could be included, and any new research incorporated into specifically what kind of services were offered.

    By Blogger Club 166, at 3:39 PM  

  • Club 166: Actually, I agree with you that this bill is, in many ways, a good start. Its tone is much more positive and respectful than the usual "combating autism" hatefests. Although it applies only to Asperger's syndrome, there is some related autism legislation intended to benefit those with other diagnoses. (However, I also agree with your gripe that those who receive services shouldn't be separated into different groups based on their diagnostic category.)

    I wasn't arguing that we should do nothing until the science is perfect. My point is that we shouldn't make value judgments about autistics (or any other minority group) based on imperfect science. Many services can and should be provided without making such judgments. When society assumes that a natural characteristic of a minority group is a flaw that needs to be remediated, we run the risk of destroying a significant amount of human diversity out of ignorance.

    I have a few more thoughts in mind on this subject, and I'll write another post on it soon.

    By Blogger abfh, at 10:54 PM  

  • Jannalou: It's not your comment that is convoluted, it's the topic itself that is very complex. And you've given me more to think about, too.

    By Blogger abfh, at 10:57 PM  

  • I'm inclined to agree in principle. Having said that, the legislation is a great start as far as compared to what we've been seeing previously. Programs like it need to be expanded to the whole of the autism spectrum. In addition, I think we need to recognize that knowledge of neurotypical social skills is not a bad thing. Learning that knowledge can be extremely helpful for autistics - as long as society recognizes our inalienable right to continue to identify as who we are and continue to interact in our own ways within our own communities. I look at it as similar to learning to speak a foreign language. If the pilot program proposed by the legislation can help teach more people on the spectrum to "speak neurotypical" when necessary, that's great - so long as it doesn't also require that they stop "speaking autistic" as well. In that sense, it is somewhat analogous to the issues associated with bilingual and ESL programming in schools.

    By Blogger Ari, at 3:07 AM  

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