Thursday, October 9, 2008

On the spectrum

Last week I posted about being told there were three types of autistic kids, and that knowing which type they were you knew how to deal with them. I've already expressed how annoying I found that.

Yesterday, I filled out a form where I had to check one of two boxes to describe my special child. The idea was if you were autistic you were either - "Asperger’s (high functioning)" or "Low functioning". For those who don't know, Asperger’s is a diagnosis on the autism spectrum characterized by no language delays, but lots of socialization delays/deficits. My kid has very limited expressive language so Asperger’s is wrong, but there is no way I'd say "low functioning". As far as I'm concerned low functioning gives people an excuse to not try to engage with an autistic person. The thinking goes, if they're low functioning there's much intellegence. There are a lot of people who prove this to be wrong (check out this blog). I'd never label my kid as "low functioning", so I checked other and wrote what I could in a text limited box.

I'm not a person who sees much meaning in luck and patterns, but I think if the same issue comes up repeatedly in your life you need to state a position that lets you deal with it in a consistent fashion. Here is mine: We need to abolish these little boxes that we're supposed to sort our autistic children into. I hate this low functioning / high functioning dichotomy. I refuse to sign on to there being three types of autism (true autism, atypical autism and Asperger’s). Life, and especially the autism spectrum, is much more about shades of grey. My preference would be to say autistic or not and if you need more data than that expect at least a couple of sentences. I think we, as parents of autistic kids, do them a disservice when we label them with one or two words (especially high or low functioning), because people have an image of what that means and almost always it's way off base.

So, my kid's on the spectrum. If you want to know more than that expect a long answer.


  1. I would love to know where this form came from, who asked you to complete it and what reason they gave for its necessity. The bottom line is that the teacher is expected to differentiate instruction according to each student's need.

  2. The form was from the YMCA in regards to summer camp; the point of the survey was to see what the special needs community was interested in. I think the point was that if they served people with autism, the level of their disability would determine what kind of summer camp experience they could have. So, this really wasn't a BCPSS issue, more of a general autism issue. Overall, as far as autism goes, I think we need to understand the diversity of the community.

  3. Did you call or write the Y? Not only were two boxes not enough, like you said, it was really insensitive.

    We need to get rid of all of those kinds of boxes. Another one that causes problems is "race". A child who is biracial has to pick one; that's not right either. How do they decide?


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