I'm writing this just after reading this article and a few others about Daryl Hannah (article). It's my gut reaction, so it's not polished or heavily thought out, but I felt sort of compelled to write about this while it's fresh in my mind.
What was my reaction? First, it was, well, sort of an anger. Not anger toward Daryl Hannah, but anger at how revelations like this change people's perspective of autism, and add to what much of the public already believes---that autistic people are very bright, that they have amazing abilities, that people can be autistic and you'd never, ever know it unless they told you, that girls and women with autism in particular are on the high end of the spectrum---things like that. And all those things might be true, for a small percentage of people out there.
And then there's Janey, and the many children and adults with autism like her, the ones on the low end of the spectrum. They don't get the press, because they don't grow up to be celebrities, they don't have astonishing abilities, they don't get "cured". They have a serious, at times heartbreakingly serious, lifelong disability. Maybe I am not using the politically correct terms here, but I am speaking from the heart. With Janey's type of autism, you would not ever be able to star in movies, to live on your own, to be politically active, to have dated JFK Jr, to be Daryl Hannah.
I am not saying Daryl Hannah isn't or wasn't autistic. I have no reason to think she is lying, and I don't think she is, as she sees it. But this illustrates the problem with having one word for autism, for conditions that range from nearly invisible to kids like Janey, to kids lower functioning than Janey. It leads, I think, to a lack of services. If the public thinks that most people with autism are able to do the things that someone like Hannah can do, they aren't going to think they need the kind of help that Janey and the other Janeys out there need. I think that's why it's so hard to get good respite, good sheltered housing, and good recreational opportunities. If you think people with autism are all like the ones in the public eye, you'd be justified in thinking they don't need our help that much.
Part of my mission in writing this blog is to give a little bit of a voice for Janey, and other kids with low functioning autism. They may not be celebrities, but they are worthy of our love, our attention and our help.
Rarer in Girls...Life with my daughter Janey, who is twenty and severely autistic
2 comments:
To me HFA is to LFA as blindness is to being legally blind. I was legally blind because I needed glasses or contacts (had lasik)to drive but I'd never say I could speak for someone who is totally blind. When it became clear my daughter was on the spectrum I've seen a lot of internet posts and Youtube videos on autism and inordinate number come from folks on the higher end of the scale. There were two instant view Netflix movies with LFA characters- "The Black Balloon" and "Fly Away". Not exactly cheery Hollywood movies due the subject matter but at least it shows how some us of live.
I need to watch those! The legally blind/totally blind analogy is great. I have been feeling guilty about this post, hoping I didn't come across as brushing off Daryl Hannah's experience and her HFA. But it's as you said---the media has HFA covered, so much so that it's what people see as BEING autism. It's very hard to educate people as to what LFA is actually like if they are going to be picturing Daryl Hannah, or (and I get this a lot more) Temple Grandin. That doesn't mean Hannah doesn't have a right to talk about her own life, but I wish that more people understood what autism is like for people on the lower end of the spectrum, and their families.
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