I do not have a degree in psychology or neuroscience with a concentration in autism. So what, then, makes me an expert in autism?
First of all, not having a degree in something doesn’t make one an expert–or prevent you from being an expert. There are plenty of ignorant fools with Ph.D.s. And while I wouldn’t want to go so far in describing most neurotypial experts in autism, I would have to insist that there is a certain degree in which they are necessarily and irrevocably ignorant, and that is in understanding autism from the inside, in how it’s experienced. Interpreting behaviors without understanding the inner experiences that lead to those behaviors will often lead you to the wrong conclusions.
A favorite wrong conclusion is that autistics don’t have a theory of mind. This is something which I have written about before and refuted. In fact, it we autistics could posit that because neurotypicals didn’t think like us, they didn’t have a theory of mind. Yes, I often don’t know how you’re thinking or why you’re doing something, because it would have never occurred to me to do or think that way. For the longest time I simply thought everyone else was simply stupid and irrational. Since I found out I am on the spectrum, I’ve come to realize everyone else’s thinking is normal and it’s mine that is on the long tail. That is, neurotypical people think in neurotypical ways, and I think in autistic ways, and some of those ways overlap, and some of them don’t, and that’s okay.
But how does any of this make me an expert in autism. Well, an expert is simply someone who knows a lot about a subject. I have done a great deal of research on autism–and you need to keep in mind that my idea of research is formed by my degree in biology and my Ph.D. in the humanities. I don’t just read a few popular books on autism, but rather have read a great many scientific articles on it. I would be willing to put my knowledge and understanding of autism up against anyone with a Ph.D. who studies autism. More than that, because of my expertise in complex network processes, I can bring that knowledge to their knowledge and expand on it–as I indeed have. More, I can take all of this data and interpret it through my own experiences, explaining what the data really means.
Many people desperately need the kind of information I can provide from my expertise. Scientists who study autism certainly do, because I think a great many misunderstandings about autism are promulgated because a behaviorist approach is being taken to study autism. Special Education teachers especially need to understand their students from my perspective. Perhaps especially those who are dealing with nonverbal students.
For example, I have been substitute teaching lately, and I almost always pick the SpEd positions. Which keeps me working. Of course, these positions are always with either a teacher or a paraprofessional in the classroom, so I am really mostly backup for the person who knows what they’re doing with that classroom. Taking these positions means I have gotten to observe students across the spectrum as well as what happens in SpEd classrooms up close and personal. While everyone working in the SpEd classes I’ve been in are doing their very best, their very best does not have a foundation in a real understanding of their students–perhaps especially their autistic students.
A recent example of this involved a non-verbal autistic girl at a high school. The teacher (I was subbing for the paraprofessional) said she thought the girl should get her hearing checked because when she was watching a video on the computer with the headphones on, she would always turn the volume way up. I pointed out that autistic hearing is actually backwards to neurotypical hearing. For a neurotypical person, the brain turns down the volume on background sounds in order to hear the foreground sounds better. This is sort of the very definition of focus.
With autistic hearing, there is no distinction between background and foreground–and often, we hear the background better than the foreground sounds. To hear the TV when everyone is at home and making noise, I have to turn the TV up to around 80 (out of 100), but when everyone is in bed and there’s no noise whatsoever in the house, I can hear the TV perfectly at 23. Daniel’s hearing is so sensitive that, when he was around 4-5 years old, he would cry that he couldn’t go to sleep because he could hear the airplanes overhead. While we live in the Dallas metroplex, we don’t live anywhere near either of the airports. You wouldn’t hear them.
Once I explained these things to the teacher, she understood what was going on. And she further told me that that explained a few other things, though she didn’t go into detail about those other things with me. Indeed, understanding the autistic experience of the world does go a long way to explaining many of our behaviors. Those experiences are fairly universal, even if they are on a spectrum. But if you understand even the cases that don’t result in someone who is non-verbal and not potty trained as an adult, you will understand many of the behaviors of those at the most extreme end of the spectrum.
So yes, I am an expert in autism. I am the kind of expert people ought to be searching out precisely because my expertise isn’t just academic, but equally experiential as well.