What a relief – at age 53 on December 24. 2009 I received a diagnosis of Aspergers Syndrome. At first this was not too bad! Typically, Aspergers is considered “a mild form of autism,” or a “high functioning form of autism.” For me this was a good feeling, I knew I had something bad (autism was bad) but a “mild” case of “high functioning” autism. Unfortunately, I hear “mild and “high functioning” meanwhile everyone else heard AUTISM, well, not AUTISM, but they seemed to hear something more like AUTISTIC RETARD THAT IS ALL OF A SUDDEN NOT ABLE TO DO ANY THING OF ANY VALUE AND HAS NO FEELINGS ABOUT ANYTHING . . .
What changed? I am the same person I always was for the first 53 and one half years of my life. Quirky Dan that some liked and others tolerated. My sister-in-law put it most succinctly later that afternoon at a Christmas eve get together at my house:
Sis in law: So I hear you finally got a diagnosis today . . . what did they say you have.
Me: Aspergers Syndrome. Have you ever heard of it.
Sis in law: Sure, you are autistic, its really great news Rainman, since you always know it all, you will be able to figure out how to fix yourself so you stop acting like a retard.
Her comments were typical of the reactions I get all over, an over bearing attitude that I need to fix my own life myself, wrapped in an overall lack of sympathy and a few pejorative pronouns thrown in for fun. This is the attitude I have received throughout my search for treatment. The worst were therapists and other providers, who replaced the pejoratives with gobs of condescension and snark. Add to this the exclusion from insurance coverage for Occupational or Speech Therapies for adults with any underlying diagnosis of autism and I began to see how hard society makes it to be an adult with autism. To clarify, I don’t have poor insurance, I have the top of the line plan that the Fortune 500 Company I work for offers through Empire Blue Cross.
The biggest observation I would make is that I have always had to work twice as hard as others to do anything from buttoning my shirt and tying my shoes to routine work functions in a bright and noisy environment. Now that I know why and vocalize my challenges and the underlying cause, I have seen the way I am treated become suddenly worse. Instead of help and accommodation, I have more impediments placed in front of me. I was suddenly stigmatized, and even the basic respect and courtesies I was used to as I was socially stigmatized and placed in a category in the minds of others of folks that can’t think do or speak for themselves. I can only imagine what people who have lived knowing all their have experienced.
Here are just a few of the concerns I have for the adult autistic population:
- There are two choices available – either work and compete head to head in the world with no respite or accommodation, or claim total disability and become an unproductive ward of the state on social security. The downside of failing is far greater than the upside of trying.
- Because the societal trend is toward drugs (bad) and removing people from institutions (good) there is no middle ground where adults with autism can turn when the pressures of life start to get to them. The cry today is for parents and care givers to get respite. The problem is that autism treatment has been relegated to the education system, which due to funding and other issues, throw autistics under the bus when they reach age 21.
- Because of the trend toward closing institutions and the lack of efficacy of pharmaceutical drugs many autistics turn to self medication. The irony here is that the same health insurance that throws adult autistics under the bus, welcomes drug and alcohol abusers, provides intensive in patient therapy and continued outpatient therapy with experienced counselors trained in repatriating substance abusers to productive society.
- The trend is growing to criminalize autism and mental illness by escalating the behavioral issues to the point of criminal behavior – UF home of the Gators and the phrase “Don’t taze me bro” had an incident last March where a department chairman called the campus police 4 times to have a doctoral student brought in for involuntary psychiatric evaluation (Baker Act) in one day. The chief of the campus police did not think there were sufficient grounds to do this. While I am not privy to the behind the scene actions, it is not disputed that the next day four officers came to this un armed cripple man’s campus apartment, found him sitting on the floor in a corner where they proceeded to mace him, taze him and shoot him in the face. He is still recovering and University police and attorneys are still determining whether or not to charge him with resisting arrest. Three of the officers were returned to work with praise from Campus Police Chief Stump who praised the officers for “obeying orders.” She should have at least included some kind words about Lt. Calley. Although the man he was not autistic, a meltdown could be fatal at UF. One unfortunate incident can close all housing and employment opportunities for life.
Autism has been reduced to a political issue, and in the end the biggest autism charity funds eugenics research and autistics are treated like midway freaks and clowns, and we would rather make snarky videos and blog posts about DSM V and Jenny McCarthy than take a stand on the issues that frame our future. In the mean time we have given out tacit permission for abuses like those noted above to continue and increase in frequency and severity.
There needs to be a unifying voice in the autism community to keep us focused on the issues that really matter. That is why I am writing this blog.
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