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Autism Conference

October 19, 2008

The Johnson County Community College autism conference ended on Friday. Among the speakers were Stephen Shore (who delivered the plenary address), Ari Ne’eman (president of the Autistic Self-Advocacy Network), and Scott Robertson (the vice-president). All three of these speakers did an excellent job.

I was among those persons on the autism spectrum featured on a video. After the showing, a few of us who were present at the conference formed a panel. I was the moderator. The questions were all interesting and respectful.

Placing many of the parents of autistic children (the so-called “curebees”) with neurodiversity self-advocates is always potentially explosive. Fortunately, there were no problems until the very end.

As the conference was concluding, a couple of parents challenged the self-advocacy position. It was a bit like a situation where, hypothetically, the parents of adoptive children of color would assert their right to speak for persons of color, even to disagree with some or most adults of color, purely by virtue of parenting.

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2 Comments leave one →
  1. Anonymous permalink
    December 15, 2008 8:06 am

    I actually wanted to comment on this a while ago, but Yahoo! is stubborn and did not want me to log in. Anyway, I think it’s not entirely fair to compare us to adoptive parents. While I think the parent search for a “cure” is pretty futile, and the word “recovery” is loaded and misleading, I think parents still have their children’s best interest in mind when they talk about these things.

    I don’t think most of the parents there were of the mind that they should control or speak for adults. I think that’s where the misunderstanding took place. Most of us still have children, not adults, so we *do* speak for them at this point. Yes, my child is autistic, but I make parenting decisions for him just as much as I do for my nonautistic child. Both children are going to have to do things they don’t want to do but that I deem in their best interest. I’m not going to let them eat chocolate for every meal or play in traffic, but I’m also not going to insist that they like Brussels sprouts or become concert pianists. I have to decide for both of my children which battles are worth fighting and which are not worth the effort.

    The confusion is where you draw the line. I don’t think Ari draws that line at anything that extreme, but I could see a lot of parents having that misunderstanding, that maybe he was proposing parents offer no interventions whatsoever. I don’t think that was what he was saying. I understood him to say that we should come to acceptance that we will never have nonautistic children, we should celebrate their strengths and work around their differences, and teach them how to advocate for themselves when they are able. In the end, that’s what most parents want. Adults who are happy and able to make decisions for themselves.

    Also keep in mind that parents are very sensitive on this. We’ve often had relatives or strangers think that we just have undisciplined children who need a spanking. We’ve had (historically) psychologists tell us that we were cold parents. We’ve had schools tell us that our children are problematic or not worthy of extra resources. We’ve made financial sacrifices for things we think might make their lives better in the future. We’ve given up activities that other families do without question, like going to the carnival or going out to a restaurant. We have sacrificed a lot for our children, so being told that we’re doing something wrong by autistic adults is very very hard to hear. And I don’t think that’s the whole message you’re trying for, but it’s sometimes the message that comes across.

    Also keep in mind that the apple seldom falls far from the tree. While many of us aren’t classified as autistic, a lot of us either have autistic tendencies, have autistic relatives, or are autistic and were never diagnosed. It’s not entirely an audience of parents who adopted children of another race, if you know what I mean.

  2. The Nominalist permalink
    December 15, 2008 12:47 pm

    Based on personal experience, I believe in interventions which will assist the child to adapt better to school, the neighborhood, etc. I also support stronger consequences for children who bully other children. Teachers and principals need to be advocates for these children.

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