Wednesday, June 4, 2014

Autism, or "why are you even asking?"

That was the question the psychiatrist had for me. "Why are you asking for a diagnosis? What does this mean to you?"

I told him what it meant to me. It means having something in my chart in case I grow old and can't communicate, or don't have loved ones to intercede for me. It means that if I interact oddly with medication, we can take the condition into account. It means one more reason not to have more kids on top of all the reasons I already have. It means that my son would have someone he could look to and know I understand him. It means being visible as someone who is autistic but still pretty successful in life, all things considered. It means choosing not to pass.

He wasn't wrong to ask that question. He was wrong to keep asking it after he told me that even being aware of it to ask for an evaluation meant I didn't have it. He was wrong to insinuate that I was fishing for a diagnosis. He was wrong to backpedal and suggest that if I was thinking of having kids, I should get genetic testing -- after he told me that genetics aren't proven to have anything to do with autism.

But that's neither here nor there.

I have a big decision in front of me. I wanted an evaluation. I got someone who admitted that he wouldn't know what evaluation tools to use on an adult, that it came down to personal opinion, and that he didn't feel I had it -- and moreover, he didn't know why I'd want to say I had it if I didn't. Why I wouldn't just be grateful. Why I wouldn't want to pass. He worked with information I know is outdated, and he assumed a lot of things, and he was condescending to me... and he gave me an answer. I don't know if I trust him to even have an answer, but he gave me one.

Do I accept it?

I have... something. It might be a collection of weird neurological tics, it might be the equivalent of Aspergers Syndrome. I know my son has Aspergers, and I know it didn't start with him, he inherited it. I have reason to suspect I'm the parent with the faulty gene. I want very much to know... but I don't. As for me, all things considered... I'm functional. There are things that are hard for me, but I cope with them because I have to. There are things that I've gotten better at. There are things I've gotten better at that I still suck with and always will. There are things that have gotten worse as I've gotten older. The doc didn't see any of those things and didn't take them seriously. I pass as neurotypical. I can get by without that label... but I don't want to. If what I have is autism, I want the label. If it's not, I want to know that. I don't want to deal with crap forever and have it played off as "eccentric" or "lazy" or "incompetent."

Do I go to another doc, though? Do I keep looking for a diagnosis? Do I insist that I do not, actually, pass as neurotypical but that there's something wrong, or do I call it a day and let it go, since I manage day to day life anyway?

I honestly don't know. I wish I did. I'm going to have to think about it... think about whether I can be okay with not knowing. With not having the label even if I should. With not knowing why or if, since it isn't that bad. I guess I know to figure out if why I'm asking is really good enough.