Who Speaks For Autistic People?

My mind goes round and round on this one. The medical professionals, who by and large are NOT disabled themselves, get to cobble together the DSM that spells out which problems are considered conditions and which are not. And it bothers me that it's starting to look as though Asperger's is going to be eliminated from the next edition.

Call me paranoid, but what if we just eliminated all the well-adjusted and verbal schizophrenics or dyslexics from their little DSM categories and left ONLY the ones who couldn't advocate for themselves or others? What kind of advocacy would the "real" disabled people be able to cobble together? You see where I'm going with this.

Now, I *totally* and completely get this idea that one person might not be "as disabled" as another. Or that maybe the person on the more functional end of the spectrum oughtn't qualify for aid when dollars are tight and we need to concentrate on those who are more severely affected. But the truth is that being autistic does not HAVE to mean life in an institution. It can. It doesn't HAVE to mean being "disconnected" from others. It can.

But you see, not only are we dealing with disability, we're also dealing with personality mixed in with the disability. Doctors and others, in diagnosing, have to tease out how one may affect the other in deciding who gets what label. And hey! I get that autistic folks generally may be more introverted as a group and that there's a fine line between "introverted and weird" and "disabled."

I have several children who manifest their disabilities in different ways. I would LIKE funding for my oldest autistic child who is unable to keep his thoughts to himself and/or can lose his temper royally. It's so way far beyond the "just teach the child to mind" category that it isn't even fair to comment upon. Suffice to say we are doing all we can. This child, without special help, will likely bounce from one low-paying job to another and have difficulty with his relationships. Even with special help, he's got some troubles. I'm truly sorry. I'm doing all I can for him. But eliminate the PDDs from the DSMs and we have a MESs.

Elfie McMelfie will likely just need a bit of sheltering. Please, no jury duty, as just the very thought that someone else isn't a Christian is enough to shock him to tears. The eternal Hell that awaits them is too frightening! (IMO that doesn't make for an impartial juror. I love him, and it's nice that he cares about people so deeply... and maybe more of us should... but just saying.) Please, no big crowds. No rock concerts. No putting any book on top of the Bible. Even anther Bible, unless it's the King James Version with no typos in it. You've been warned. Elf should be ok if people understand his quirks and let him work with a small group of folks doing the same thing each day. He will be ok with just a bit of understanding; he really will.

But Woodjie. Poor little guy needs LOTS of help! This fellow is leading me down a path I have never travelled. I am not sure how to help him. I do know he needs lots of help to succeed. I know he would probably want other autistic people who know a bit better about what life is like for him to speak for him rather than a doctor who sees him for 15 minutes. For that matter, I know that little fellow well and would be the very best advocate I can be for him... but I'm still Mommy. Still see him with the Mommy heart. Certainly if other people with the "autistic" label are advocating for autistics in general, it would be better for Woodjie.

Then again, too bad we have to have labels. Too bad we can't have a number and say well, Woodjie's life skills are at a 10 out of 100 (100 being typical three-year-old, going potty but needing help with snaps sort of thing). Then we could more closely advocate between labelled groups. Certainly my child has things in common with a Downs Syndrome child, and things NOT in common. But yet we seem to rally people in our own organizations without looking to the commonalities between conditions.

Where am I going with this? I don't know. Just wanted to chat with you today about the fact that having the more "functional" people losing the label soon probably will not bode well for those remaining. Probably it will reinforce stereotypes about autistic people as well.

If you have any thoughts on this, I'd like to hear them unless your surname happens to be "Savage."