Last night Georgia Public Broadcasting showed a documentary called Autism: Coming of Age. It focused on three adult autistic men. One was non-verbal, lived with a roommate and spent his time helping his grandfather with projects. Another spoke with a monotone voice and lived at a special boarding school that taught basic job skills. The third man was 31, had a pleasant voice, was fascinated by vacuum cleaners, worked vacuuming hotel rooms at Marriott, lived at home with his parents and hoped to one day have his own family and home. In each case the parents worry that these men will not have the support they need in the future.
I have e-mailed an autism research center several times. They keep responding by requesting my phone number but do not call. This has been going on for months. I have even called and left a voice mail. Finally, someone calls me about a week ago. I explain that I’m interested in an evaluation for myself. Even after I say this she continues to interact with me in a chatty manner. This confuses me but I respond in kind. After the call is over I realize she must deal with more parents of autistic children than with autistic adults. I imagine the parents find her manner reassuring. I find it annoying. She gives the information I originally requested two months, but not over the phone. She e-mails it to me.
I call one of the psychologists the lady at the autism research center refers me to, and leave a message. When the doctor calls me back she keeps questioning my motive for wanting an evaluation. If I’m working and living with roommates, I must be doing pretty well, she says. I tell her I need to develop better coping skills, and to do that effectively I need an accurate diagnosis. This seems to confuse her. She rather cryptically explains that if I want more than just a yes/no diagnosis it’s more work for her, and would cost me more money. I am confused by this, and restate that I simply need an accurate diagnosis to develop appropriate coping skills. I ask her if she provides on-going counseling for adults with autism, and this seems to confuse her, but she says yes.
Replaying the conversation in my head, I come to the conclusion that she thinks I want disability benefits, even though that’s a very different goal from my stated objective. I don’t have a lot of money to spend on doctors, and I don’t feel very confident that this doctor is interested in helping me. I discuss the conversation with autistic adults, who share their stories of dealing with strange and unhelpful psychologists. One notes that working with a psychologist is an expensive experiment.
I’m about 17. I have finally distilled the awkward behavior of my childhood into tools, rituals. I sit cross-legged on my bed, in a darkened room. I have headphones on and I’m rocking back and forth, not necessarily in time to the music. My head moves back and forth. My hands flap, or they tap my legs, ankles or bed. Naught but silence can be heard outside my room, with the exception of an occasional squeak of mattress which can be attributed to restless sleep. I will do this for about an hour, and when I am done I will feel better, more relaxed and less stressed. No one knows I do this. It is my secret. I would die if anyone saw me do this. Because I know there is a word that would leap first to their mind to describe the way I move: retarded.
I feel at ease with my roommates. It is a rare thing for me to feel so at ease around people who are not my family. Only, to be honest, my roommates are nicer to me than my family. I have tried to analyze why I feel at ease with them. I have come to realize it’s several things. They are Pagan, and so I feel comfortable referring to my faith around them, and they know all about my work with Patheos. Also, they are native to the South and enjoy Southern culture, and I find that comforting in a world where so many people move to Georgia from out-of-state and our native accent is disparaged. The way they interact with each other, and with me is somewhat predictable. Maybe that sounds deathly dull, but it’s not. They are funny, kind and passionate people, but there is a sense of stability in their lives and manner that is comforting to me.
But maybe one of the reasons I feel at ease is they take me as I am. I helped to clean the house when they had company coming to visit, but when the company came I couldn’t leave my room. Just the thought of having to interact with so many new people and the social variables involved left me exhausted. It’s a strange thing to be able to randomly plop down at a table with Erynn Rowan Laurie and Diana Paxson at a big conference and engage in conversations regarding various stripes of Paganism, and quite another to sit through the social pleasantries involved in meeting a group of people and explaining where your family is from and what you do for a living and isn’t the weather nice?
My roommates just accepted that I needed that time alone. I used work as the excuse, and I’m fairly certain they knew it was an excuse by how they accommodated it. They have a houseguest now. It’s just one person, but that person is staying for several days. I am uncomfortable with the situation but I can handle one person.
I have found some comfort in interacting with autistic people online. Some are diagnosed. Some are self-diagnosed. Some, like me, are seeking an evaluation. Some of the people I interact with tell me they are non-verbal.
What I find most comforting in interacting with them is that I can have a productive exchange them that isn’t crouched in emotional terms or based on social politics. When I write this blog, for instance, I tend to take on a voice to give my writing more emotional flavor. Sometimes I think I would like to be the kind of person that writes and speaks that way naturally, the way most people do.
I find it interesting to see the difference between how autistic adults speak of autism and how parents of autistic children speak of autism. The parents of autistic children are struggling with something they don’t understand and can’t quite grasp. Many are interested in finding a cure for autism, but autism isn’t a medical defect. It’s a different neurological makeup which affects slightly over 1% of children in the United States (based on an estimated 76 million children in the US). I was only able to find an estimate that half of those diagnosed with autism also have a low IQ. 2-3% of the general population also has a low IQ, a far greater number than those diagnosed with autism.
Autism Speaks came under fire for a film in which Alison Singer describes contemplating murder-suicide simply because her child is autistic. As I watch this video of Singer’s child I can see my own nephew’s behavior reflected, and he is a fantastic kid. The fact that Autism Speaks promotes these types of views and advocates for a cure, as well as clinging to the disproven theory that autism is caused by vaccines, makes them a negative and unproductive organization in the eyes of some autistic adults.
As I contemplate the idea that I am autistic, and as I consider my nephew, who is a marvelous kid, I find the idea of being cured a bit insulting. I find that I’m not angry at the idea of being autistic. What I am is a unique expression of humanity. To cure me suggests that people like me shouldn’t be born. That the interesting and fascinating autistic adult writers I have been reading shouldn’t exist. And as I wonder about my nephew, who has had significant trouble in school despite being a smart, kind and funny young man who doesn’t like to look you in the eye, well…. anyone who tries to cure him would have to get past me first.
I am 30 years old. My roommates went out to dinner and see Wrath of the Titans with their houseguest last Sunday. I had the house to myself for a few hours. I fixed myself dinner, and sat down to watch The Big Bang Theory.
I only began watching the show because I was told Sheldon Cooper, one of the main characters, is autistic. The writers deny this, although the actor who portrays him feels it’s pretty obvious. I didn’t like Sheldon Cooper at first. I thought he was shameful. I thought he was a disgusting and inappropriate caricature. But I kept watching, and eventually realized that how I initially felt about Sheldon was how I felt about my own quirks. My rocking and tapping. My social difficulty even now, after decades of trying to improve myself. My sensory overload issues. My intense need for the world to make logical sense. My deep and abiding love for the strangest things.
I began to love Sheldon. He has become a hero of sorts to me. He is who I secretly want to be, freak flag flying high. I take immense delight in him, as if he is my inner child that has finally been let out to play.
I watched The Big Bang Theory and laughed heartily. I did the dishes. I cranked up some music. I rocked, I flapped, I tapped, not necessarily in time to the music. About an hour after I turned on the music my roommates came home. I was calmer, more relaxed. I think they may have felt bad about going out without me, even though I wasn’t interested in seeing Wrath of the Titans in the theater. But I had a marvelous time, being able to be fully myself, all alone.