The other day I was talking to my mom about the ongoing issues with the trailer park and the possibility that I might have to move. The trouble is there aren't many places around here that I can afford. She said, "Well, what about your Aspergers? Couldn't you get help with that?" I said, "Mom, I am not diagnosed. It takes a lot of time and money for that and I just cannot spare any. All I really have is the diagnosis I got back in third grade."
That's when she dropped the bomb: I never was diagnosed. Not with anything. All that behavior modification, all the pills, the counseling, all the stigma surrounding special ed, the isolation box punishments, all of it, was done to me without the benefit of a formal diagnosis. I had a label, yes, but it was not a diagnosis. All of that trouble, all of that misery, was done on someone's say-so. They didn't even give me a diagnosis that I could cash in on one day. No, I was a problem child and eventually they either washed their hands of me or I finally wised up, because one day all of it stopped with no explanation, not even a "now you are normal." I was thrown back into mainstream society, sink or swim. My God--I was prescribed pills by a doctor, pills that made me psychotic--apparently without a diagnosis. I was a child. My human rights were violated. My consent was never asked, never given. And for what? I wish I could sue, but who would I sue after 50 years? And who would I get to take my case?
"Well, they didn't know about autism back then," my mom said. I reminded her that Dr. Temple Grandin is ten years older than I am and her parents and her doctor had no doubt in their minds that she had autism. And that Dr. Hans Asperger identified the set of symptoms that bear his name (or used to) back in 1944. My mother said, "Well, they didn't talk much about it" at the school where she went to get her Masters in Special Ed. I know that school; I went to it not long after (maybe 5 or 6 years), and there were some departments where the textbooks were sadly way out of date. And this was a major state university! The only explanation I can come up with is that this part of the Midwest must have been a backwater if autism was only discussed in terms of the most severe cases. As I said, Dr. Grandin's parents and doctor knew and she is older than me.
So here I am. I don't know what the hell I am. My nurse-practitioner says she has no doubt that I have Aspergers even though I hide it very well; but she is only a nurse-practitioner so I don't think her word would hold any water. I don't have the money or the time to devote to chasing a diagnosis and I don't think it would do any good at my age. The damage has been done. Nothing can change that.
That's when she dropped the bomb: I never was diagnosed. Not with anything. All that behavior modification, all the pills, the counseling, all the stigma surrounding special ed, the isolation box punishments, all of it, was done to me without the benefit of a formal diagnosis. I had a label, yes, but it was not a diagnosis. All of that trouble, all of that misery, was done on someone's say-so. They didn't even give me a diagnosis that I could cash in on one day. No, I was a problem child and eventually they either washed their hands of me or I finally wised up, because one day all of it stopped with no explanation, not even a "now you are normal." I was thrown back into mainstream society, sink or swim. My God--I was prescribed pills by a doctor, pills that made me psychotic--apparently without a diagnosis. I was a child. My human rights were violated. My consent was never asked, never given. And for what? I wish I could sue, but who would I sue after 50 years? And who would I get to take my case?
"Well, they didn't know about autism back then," my mom said. I reminded her that Dr. Temple Grandin is ten years older than I am and her parents and her doctor had no doubt in their minds that she had autism. And that Dr. Hans Asperger identified the set of symptoms that bear his name (or used to) back in 1944. My mother said, "Well, they didn't talk much about it" at the school where she went to get her Masters in Special Ed. I know that school; I went to it not long after (maybe 5 or 6 years), and there were some departments where the textbooks were sadly way out of date. And this was a major state university! The only explanation I can come up with is that this part of the Midwest must have been a backwater if autism was only discussed in terms of the most severe cases. As I said, Dr. Grandin's parents and doctor knew and she is older than me.
So here I am. I don't know what the hell I am. My nurse-practitioner says she has no doubt that I have Aspergers even though I hide it very well; but she is only a nurse-practitioner so I don't think her word would hold any water. I don't have the money or the time to devote to chasing a diagnosis and I don't think it would do any good at my age. The damage has been done. Nothing can change that.
