I feel like the lack of official diagnosis for the last 18 months coupled with Crimson's more severe symptoms in this age range (and the fact that no one ever suggested she be screened for anything)has somewhat inhibited me from facing reality with Rejeanne. Also, the internet is overwhelming. I have never seen so much repetitive information on one subject in my whole life, while still not addressing in a simple, straightforward manner the nuts and bolts of what I need to know (what treatment is appropriate when, how to get it paid for, what are her rights for treatment, what should I expect from her, how do I discipline her, do I discipline her?, what are the outcomes of various therapies, what is the science behind them, is there a downside to trying ABA?, etc and then some).
One thing I'd like to know, where are all the adult autistic people? I know you all are there somewhere, but where? I'd like a chance to see the full range of outcomes and to meet some people who have lived this life already.
Another thing that is bothering me is the desperation levels of a lot of parents on the internet. I'm sorry, but Autism is not the worst thing that could happen to a child. It's really not. It's hard some days. It can be sad some days. Overall though, my daughter is unlikely to die from autism. She seems to be happy and enjoys life. Some of the crackpot stuff out there claiming to "cure" autism is frightening, as is the volume of parents willing to give these things a try without any science supporting the methods. Autism is not cancer but some people seem to treat it that way.
Even though I want (and will make sure that) Rejeanne receives age and skill appropriate services to help her achieve as much functionality as possible so she can be independent later, I don't have this burning desire to "cure" her autism. Maybe that makes me a bad mother or something, but I happen to like who she is. I just want her to develop the skills she already has and hopefully develop meaningful speech. I don't want to make her "normal" or force her to do every single thing the way experts/society/public schools think it should be done. I'm also one of those people who think it is okay to be deaf. I understand why some deaf people don't want to correct their hearing even when it is medically possible. We don't all have to be the same. It is okay to accept that we aren't perfect specimens of societal standards. It's okay to look in the mirror and smile at the funky bird staring back at us. Seriously, it's okay.
As for Temple Grandin, I may bite the bullet and watch the movie now that I have read an interview she did. She embraces the autism and works with what she's got to the best of her ability from what I can tell. Most importantly, she's not sitting around waiting for a "cure", and the rest of us shouldn't be doing that either.
Here's a bit from her interview posted on wrongplanet.net:
WrongPlanet.net:What do you think about curing Autism? You've said things like "genius comes from autism" but you've also supported the ABA.
Temple Grandin:Well the thing is, with a little bit of autism, you know, if you have mild autism, you'll get genius like einstein. Too much of autism, you're going to have a severely handicapped child who's going to remain nonverbal and if you don't do things like aba, they're not going to function at all. There is no way with any treatment they have that you're going to cure autism. There's basic abnormalities in brain development.
I would think in an ideal world, you don't want to have people who cant talk, but on the other hand, you definitely don't want to get rid of all of the autism genetics because if you did that, there'd be no scientists. After all, who do you think made the first stone spear back in the caves? It wasn't the really social people.
If we didn't have a little of the autism trait we wouldn't even have this building here today with all the electricity in it, your video camera, powerpoint shows... None of this stuff would even exist.
WP: So if there were something that cured all the autism genes, you wouldn't support that?
TG:No, I would not support that. because there is a point where mild autistic traits are part of normal human variation. Because on the other end of the spectrum you have Williams Syndrome, and if you look at the brain abnormalities, they're exactly the opposite of autism. the whole back of the brain, where the hard drive is--there isn't too much there. But all the social emotional circuits are hooked up so [people with Williams Syndrome] are hyper, hyper, social. I'm gonna bet you there's a lot of yackety yackety salesman that don't talk about much of anything who are Williams Syndrome variants. But then you get to a point where a person [with Autism] cannot talk, they're self inuring themselves, and they cannot live independently. That [is something] you would want to eliminate, if possible, but you would not want to get rid of all the autism genes because you wouldn't have any computers-- you wouldn't have any scientists.
I think this more middle road view of autism is the place to be. I think it is realistic, genuine and values the good traits and inherent personhood that seems to be missing in so much of the "autism debate". So, I'm going with the above.