Wednesday, February 23, 2005

Autism 101

My brother Bill is autistic, which is a disorder no one really knows anything about other than how it is displayed. Bill is the oldest, so my sister and I have always been around autistics and their families. Normal gets redefined when one has a brother with autism.

NBC has jumped on the autism train with a series titled "The Hidden Epidemic". Although I applaud NBC for taking on the issue, I am generally offended by phrases like "the deep personal toll taken on families' and blah, blah, blah. My family was going to be fucked whether Bill was "normal" or not, so I have no idea if the deep personal toll can be related to him or all the other drama we each brought to the table.

Just once, I'd like to see a severe autistic on t.v. rather than the high functioning genius who makes $30,000 on paintings of London. My brother is cool and I adore him. He has a limited vocabulary and his sign language has been "Bill-a-fied" so that it's hard for folks to understand. Bill can't tell you when his teeth hurt and he really can't stand doing "new" things. When he learned how to write his name it was the equivalent of a PhD and we were all so proud of him.

If NBC would like to do a real story on the toll autism takes, I'd be happy to sit down with them. I'd tell them about the 90% divorce rate among parents of autistics. I explain the physical and emotional drain of years spent teaching a child to say "no", "my name is ...." and "I live here". I'd give a detailed explanation of the fear and anxiety you feel when they don't learn "help" and they never get their address right.

I now worry about Medicaid cuts and job funding cuts. Yes, Bill works (shout out to Chic-Fil-A!! Y'all ROCK!!) and the funding for his job program is on the chopping block AGAIN this year. I'd like to ask the viewers of NBC how moral it is to tell a 34 year old autistic Black man who is ready for work at 4 am because he loves it so much that he's just screwed 'cause Bubba don't want no new taxes. Yeah, I get pretty emotional.

Hey Katie, do you really wanna know how emotional it is? Nah, I didn't think so. I don't wish autism on anyone, but it's not a plight - it's a state of reality. We don't pray for a cure and I haven't cried about it in years. Bill has a great life and sometimes he even makes time for a visit with me. But this "pro-family" agenda is taking a toll on my family. We don't need sympathy or Brian Williams mouthing off about new "treatments". I just want the state to get it's boot off my neck so I can be a sister for 5 minutes rather than an advocate 24/7.


Crystal-Lynn said...

Holla ... love it.


Cheetarah1980 said...

this post touched me on a deep emotional level that I can't quite explain. but i like that, so thank you. you're brother sounds like a great guy. I think it's cause he loves his job. And most "normal" people making 6 figures don't. It's the simple things.

NursePam said...

What a beautiful post. I found you through blackademic and began scrolling through some of your entries.

Every government employee, every politician, every person with his hands on the purse strings ought to read this post.

I have never seen a more eloquently simple, loving, and real description of life with a special person.

In particular, the fact that Bill arises at 4 a.m. each morning because he loves his work so much made me weep.

I wish you would make your blog public. You have a lot of important things to say on a lot of subjects. It's possible that you don't want to put up with the bullshit that comes with that.

But here's my personal take on the bullshit: what's a day without pissing somebody off?

Yankee T said...

What a beautifully written, moving post. You're a terrific sister.