I'm a 37 y/o male living in rural Ohio. I struggled socially in school, when I was approximately twelve, I became depressed, and at 15, my mother took me to a psychiatrist because I was reporting hearing things that weren't real.
I was diagnosed with schizophrenia, later changed to schizo-affective disorder and was shuffled between various medications for the next twenty years, none of them able to help.
At 36 years old, I discovered that the things I was hearing, smelling, seeing, feeling, and tasting were not hallucinations. My brain was isolating tiny background smells, sounds, tastes, touches, and sights and amplifying them. I started looking into what could cause this, and it pretty quickly led to autism. I asked my psychiatrist about it, and he said it was possible, but unlikely, because no one ever noticed it when I was a child.
I went home and called my mom and asked her about it. Her answer devastated me.
"Oh, when you were a kid the school nurse told me I ought to have you tested for autism".
I have spent my life a suicidal wreck. Terrified that any friend I make will find out that I'm schizo and abandon me (it happened, a lot). Going from ineffective medication to ineffective medication, each with worse side effects than the last with psychiatrists telling me that I would only get worse, that if I didn't stay on medication I would get worse and suffer irreparable brain damage. This was even more terrifying when you realize that, until the ACA, I couldn't get health insurance.
It took me two years to get tested for autism. Last December, I finally got a neuro-psych test and my official diagnosis. Unspecified Autism Spectrum Disorder. The doctor who diagnosed me informed me that, since I was an adult, and ASD was a developmental disorder, that "unspecified" was as specific as they could get. I felt like I finally made sense, that the way I thought and felt finally had an explanation. But I'm still lost.
This website is perfectly named. It is exactly how I feel. I've spent my life referring to other people as "humans". I've felt like a stranger in a strange land, like I don't speak the same language as any of the people around me.
Before my diagnosis, I felt like I was floating in a row boat in the middle of a body of water with no land in any direction, as far as the eye can see. Now, with a diagnosis, I feel like I've been handed a note telling me that I'm in the Pacific ocean. I know where I am now, but I'm still powerless to do anything about it.
My psychiatrist said I should compare it to an MS diagnosis. He said, someone with MS might suffer idiopathic problems, they might go blind for a week, or suddenly be unable to move their legs, and no one would be able to find a cause. But when they get the diagnosis, even though it carries a bad prognosis, at least they know that their problems were real, they have validation that their problems were real.
This initially made me feel better, but a very major difference hit me on the way home. If I had been diagnosed with MS, I'd have been referred to a specialist. There would be a treatment plan. They wouldn't have just told me "You have MS", and sent me home.
I've realized that living with autism is like living with blindness or paralysis. I have to find a way to live in a world designed for people with abilities that I don't have. I know it's not my fault now. I know that it's not a moral failing or a lack of willpower that keeps me from being able to live like everyone else, but that knowledge, and $1 will get me a cup of coffee. I can't find any resources in my area for adults with autism, neither can my psychiatrist or therapist.
The ultimate insult to injury, to my mind, is that when I finally got my diagnosis, and saw a list of symptoms of autism, it felt like an exact description of my life. I don't understand how none of the professionals I've seen since I was 12 ever noticed that I fit the exact profile. Part of me wishes I had never found out, because then I wouldn't be where I am now, wondering how my life would have turned out if I'd gotten the appropriate therapy when I was still young enough to find a way to live in a world where I don't belong.
27 Mar 2019, 10:07 am
