Sunday, December 18, 2011
The importance of a diagnosis of Asperger's/autism for adults
The following is a response to a LA Times article.
I am autistic and I have also worked as a behavioral assistant with autistic people. In 2003 I worked in a classroom of about ten developmentally disabled students in California that had significantly more autistic children than the one hundred and twenty bed facility for developmentally disabled adults I worked in during the mid-eighties in Illinois. This may be anecdotal and certainly doesn't prove a trend, but it personally left be with a profound feeling that something very, very odd was going on.
I was told by a counselor that as an adult I would never be diagnoses with Asperger's, it wasn't considered appropriate to diagnose adults as such. Many people asked me why it mattered. Five years ago I was given Prozac while on another antidepressant and I had a horrific reaction that has left me with a permanent case of sensory overload. If is difficult to leave my apartment for long and I see no way I could tolerate working a regular job anymore. I researched the symptoms of my bad reaction and they were completely consistent serotonin syndrome, also called serotonin poisoning. Serotonin syndrome can be fatal and one third of autistic people are unusually susceptible to it. I feel that I should have been diagnosed with Asperger's and that my doctors should have been aware of my suceptability to serotonin syndrome, but they were not. The sensory overload that traps me in my apartment should have been avoided. But sensory overload is a symptom and not a diagnosis and Asperger's itself is a diagnosis, but not considered a disability. So I am seriously and needlessly disabled, but I unable to obtain any help because my condition does not formally qualify me as being legally disabled. As a software engineer I could have easily paid out of pocket for medical services that could help me, but not being able to leave my apartment for long makes my ability rather irrelevant. This is my first reason for asserting that a diagnosis of Asperger's in an adult is still important.
My whole life I have been odd and different from others. Despite being reasonable attractive, intelligent and even popular, my romantic life has been virtually non-existent. This and other issues have caused me considerable pain in my ability to fit in even though I seem to have a great deal going for me. The issue of self-knowledge is vital in both spirituality and mental health. My diagnosis of Aspergerg's has allowed me to reexamine my life and make peace with my past and move forward. Yet my quest to find out if I had Asperger's was met with wide derision my medical and mental health workers. I feel this is a basic human rights violation and that people with Asperger's deserve the dignity and right to understand who they are. This is my second reason for asserting that a diagnosis of Asperger's in an adult is still important.
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A similar thing happened to me. It still seems really unfair. I have asperger's, my doctors and therapists are treating me for it - However I can't get an official diagnosis because they won't test adults. Unfortunately, I exhibited severe symptoms in school, but Asperger's wasn't around then and there wasn't really a lot know about Autism in general. They diagnosed me with "Attachment Disorder" It is so frustrating when I think about that and about the lifetime of therapy and the 15 years of medication experimentation. Finally, they ran out of things to diagnose me with, so they tried a drug combination to treat autism and it changed my life (This happened earlier this year and I am 30 years old). Luckily, I did qualify for social security disability. Thank God. Unfortunately, I am considered an extremely high functioning adult with mental health diagnosis, so I get practically no help. The only thing my case worker does is drive me an hour and a half to see the psychiatrist treating me. The psychiatrists in my area will not allow me to have half the medications I am currently on that are helping me. The local county mental health has policies that they will not prescribe addictive psychiatric medications. Most of these medications are addictive. Last month, I was told that my case worker could no longer drive me that far because of funding cuts.
ReplyDeleteAnother problem was trying to find a therapist who would agree to see me. I called every place in a 60 mile radius and they only see children. There was one therapist who could see me, but she doesn't take all my insurance. As a result I have a pretty high co-pay. Anyway, I can definitely identify with your story and the frustration.
I always try to keep a positive outlook, but there are days that I just curl up in a ball and cry. On the plus side, I was recently accepted into a Master's Program so I can pursue writing and teaching at the collegiate level. This job should be a better fit than my current jobs in customer service. It's a three year program, so I have two years to go.
Good Luck! I hope you see a cloud with a silver lining soon. My thoughts are with you.
I just wanted to let you know you're not alone. And thank you for reminding me of the same! :)
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