I’ve been thinking about this post for a while now. At least since December when mom said I should write it. It is a review of my experience in undergoing a recent autism evaluation. I’ll admit that it is MUCH more fun to write about MarsCon, the FuMP, Dementia Radio, and all things geeky. And, I’ll get back to those things but this is important too. Especially since it directly reflects my experiences on the Autism Spectrum and my opinions about how I am perceived and treated in the world. And mom said so.
In December, I began a two month process of re-evaluation with a developmental pediatrician who specializes in Autism. I did this for one reason, and one reason only; my parents made me. My first evaluations were done overseas in a Department of Defense elementary school by educators and psychologists. To say that my parents and I found it to be seriously lacking in value is an understatement.
You might think that because we’re from Oregon and I attend a virtual school from home that my parents are more than a little bit alternative – granola, as they say. Nothing could really be further from the truth.
My parents have specific philosophical, political, and cultural values that challenge the existing status quo in parenting and education (see Against School by John Taylor Gatto for one example of what they talk about), but they are really so normal it’s not funny. My sister goes to a public school, Mom was a state-level PTA president, and my dad works for the government. Subversive we are not. Different, maybe. I’ve mentioned before that the series The Big Bang Theory is my life in fast forward.
I began the evaluation with Dr. H in December. It wasn’t really all that exciting – I sat in the room and was asked questions by different people. Dr. H did a physical exam and then on other visits I took IQ tests, and reading tests, and comprehension tests, and performed like a good little monkey. Then, in late January, Dr. H sat with my parents and told them what she had decided about me.
First, I think it’s stupid to evaluate whether someone is on the autistic spectrum if they are not incapacitated by it. Second, I don’t feel that my autism is a disability. I prefer the term disorder to disability (although neither is accurate). Lack of order isn’t necessarily bad for us out of the box thinkers, but lack of ability is unnecessarily limiting. And not true. I feel that I should be evaluated as a person (if at all). Dr. H did not get this. She was specifically not interested in actually having a conversation with me. She definitely didn’t get my jokes.
Dr. H: What are your flaws?
Me: Oh, I’m an egotist. But, of course I have every reason to be because I’m perfect in every way.
Dr. H: Are you kidding?
Me: No, I’m serious. Why would I joke about something like this?
Of course, this was immediately reported to my parents as indicative of my extreme social disability. None of the people who try to understand me and fail get my jokes. Coincidence, I think not. My level of sarcasm and deadpan delivery completely flew over her head – even when my parents said that they were sure I was joking. Note for my future doctors – just because I say I’m serious doesn’t mean that I am.
To paraphrase Will Smith’s character in Hitch – 60% of human communication is body language and 30% is in your tone. Only 10% comes from the words you actually say. Ironically, one of the basic traits that identifies people on the autism spectrum is their inability to correctly interpret social cues. I’ll admit that I have some trouble with this. I’m good with sarcasm, but sometimes I am rude when I don’t mean to be. However, Dr. H missed my social cues completely.
Another trait that Dr. H focused on was my lack of desire to please her or any of the other testers. Well, duh. Why would I? I don’t really care what she thinks of me. I told her this, but she didn’t take me seriously (as opposed to taking me quite seriously when I was, in fact, joking). Apparently there is something in the “normal” human experience that makes people willing to classify others as being superior to or in authority over them – and makes them want to please them. Thanks, I’ll skip that part. Some people are superior to or have authority over me – but they had to earn it!!! It certainly isn’t something I accept from others merely because they are taller or older or have more degrees than me. (There is a whole other topic that I could bring up here regarding people who feel they must bully or otherwise coerce children and the weak into respecting them – but I’ll save that for a rant on why people become teachers…). ((I wouldn’t keep taking cheap shots if other people didn’t make it so darn easy!!!))
Dr. H is very invested in “normal” - like many other medical professionals and educators I know. I always wonder whether they have so much trouble being “normal” themselves that they must become an expert on the subject. If “normal” means being neurotypical, I’m not all that interested. So what if my best ever social experience ever was MarsCon… (MarsCon was awesome, by the way! More later…). So what if my idea of success and interaction defies the “normal” herd mentality. I define success as doing what you love and being able to support yourself with it. That does not require that I go to mainstream school, major in business at an Ivy-league college, or work as a drone in any capacity.
So here is my review (an evaluation evaluation, as it were) of Dr. H and the recent bout of autism-related testing I underwent. Dr. H and her staff seemed nice. She made more of an effort to understand me than most people do. If you have reason to hire a developmental pediatrician in south Texas, she’s good – probably better than most. She may or may not be higher on the autism spectrum than I am. But, don’t expect her to understand or validate any attempt to defy the expectations of “normal.” She is the expert after all.