The other day my mom showed me some articles in the newspaper about autism. Midway through one article (http://www.thestamfordtimes.com/story/492905), I read this:
One of the center's clients, a Rowayton resident who wanted to remain anonymous, said her daughter used to avoid eye contact and, like many autistic kids, repetitively flapped her arms and walked on her toes. The client's daughter has been working with Rohdie for a number of years, and when asked what challenges the behavior analyst and now the Southfield Center has helped her daughter overcome, the client said "Oh my God, everything."
"You would never be able to tell she was autistic," the client said, adding that, with the help of Rohdie and other professionals in the field, avoiding eye contact, flapping and toe walking issues have stopped for her daughter.
This kind of attitude from parents and professionals makes me want to scream.
I generally don't like writing about my disability experience in much detail. I'll just say that a) a lot of important things are hard for me to do consistently and independently, b) I have severe anxiety problems, and c) a and b feed into and increase each other. At this point, my dreams for where I might live and what I might do after college are pretty limited which is depressing (and increases my anxiety, ha ha). I think it would be very easy for me to end up in an emotionally and physically dangerous situation, and I'm working hard to avoid that.
A lot of people with autism spectrum disabilities have it way worse than I do--their opportunities for communication may be very minimal, or they may be so overloaded by sensory or emotional experiences that they self-injure and seriously hurt themselves. Younger people with ASD are often bullied, which can result in various kinds of damage. And all people with developmental disabilities are much more likely to be abused.
People with ASD have real problems. That some of us walk on our toes is not one of them. When I read the above quote, I had several thoughts:
1. Passing as non-disabled is not always a good thing because it means that people don't realize you need help, and won't believe you are disabled even if you tell them, because you look "too normal."
2. The experience of living as a passing person can be really isolating and scary because you are constantly trying to hide your reactions, feelings, and body language. It makes you pretty tense and it makes you feel like the people in your life don't really know you.
3. When "not looking autistic" is equated with "being better," that makes it hard for an ASD person (and their parents and professionals) to develop a good set of goals. Instead of goals like, "This problem is making my life harder--how can it be improved?" the goals are like, "I look autistic--how can I hide it?" In the person's mind, goals that are objectively good (like being a kind person, and trying to be happy and successful) become mixed in with the subjective, energy-consuming goal of "not looking autistic." I am still trying to untangle this crap in myself.
4. Some people "stim" (rock back and forth, toe-walk, hop around, run around, vocalize, flap their hands, etc.) because it helps them deal with overwhelming emotions or sensory information. Some people avoid eye contact because eye contact makes them upset. If they stop stimming and start making eye contact, they may be a lot more stressed.
5. Even if 1-4 weren't true, it's still a waste of resources that would be better spent dealing with the real problems that ASD people have.
6. I could try to give these parents and professionals the benefit of the doubt, and say that they're being thoughtless and inefficient. But when I read this stuff, it doesn't just annoy me, it hurts me. It says to me that these people care more about not having to look at a visibly Autistic person than they care about actually helping people with ASD in meaningful ways; that they would rather ASD people suffer in silence than be happy and loud. That doesn't feel like ignorance, it feels like hate.