Disclaimer: For those of you who are used to my edublogging, this is a brief respite. Every so often, I need to blog about myself as a person, without my “teacher hat” on. If you don’t care to continue, I won’t begrudge you that.
Ever since my elder son’s diagnosis in November of last year – almost a year now, which is unfathomable to me – the subject of autism has been on my mind frequently. Okay, it’s probably been on my mind longer than that, since the diagnosis was no real surprise to us: all the stereotypies were there, as well as the developmental delays. I had done a fair amount of research on autism and its symptoms, having done a presentation on the subject in college for my special education course, and the speech therapist working with him had talked to us about it, since she had worked with several children on the spectrum. Since the diagnosis, I have tried to stay apprised of happenings in the autism community, most specifically the crazy antivaccinationists that use autism as a vehicle for their crazy conspiracies about “Big Pharma” and the evils of vaccines (like those dreaded “toxins”). In my time on the Internet, I’ve run into more than a few people who have made wild claims, and I keep up with them so that I can be prepared to counter them when I encounter them, just like I do my research on crazy ideas like FEMA death camps. (That’s not a joke, either; I had a student seriously ask me about these, his only evidence proffered being a YouTube video.)
But autism for me is a bigger issue than nutjobs like this. It is something that I live with daily, and not just in my son.
Let me back up for a moment: Part of what prompted this is new evidence that the prevalence of autism has increased to about 1%. (See here for some comments regarding the reason for this.) It made me think about something that I’ve never really talked about with anyone outside a small group of family.
See, when we got the diagnosis and even before it was official, I kept thinking about the genetic component of autism. Really, what I was doing is (from my observation) what many parents of autistic children do: they try to find answers. For some, it’s the idea of some environmental trigger, but for me, it was more personal, that maybe I have some role in it. (Yes, it’s irrational. I can’t really help that.)
So I started to reflect back on how my life has been like. I thought about my introversion and sometimes detachment from society. I thought about my frequent inability to pick up on social cues throughout my life, resulting in the appearance of naiveté (well, maybe more than the appearance) and social rejection. I thought about my strange sensory experiences, experiences so strange that I have a hard time describing them because there just aren’t words sufficient to convey the meaning. I thought about my borderline obsession with patterns and order, even little things like walking with my head down on a sidewalk so that I could measure my strides by the cracks.
And then the conversations started happening, especially with my parents. “You lined things up when you were little,” my mother tells me. “You used to flap your hands like that,” my father adds. And suddenly things start to make sense.
Now I have to be careful to note here that I am not self-diagnosing myself – I fully realize the danger in making this move, in convincing myself that I’m on the spectrum as well (although certainly I would be considered high-functioning, I believe). But I see in myself and even some of my relatives the very sorts of signs that lead me to believe that ASD might run in my family. And it would be an answer – maybe an unsatisfactory one, but still an answer. And that seems like better than nothing.
But even this realization of sorts has been bittersweet: now I find myself wishing that there was a good way to diagnose adult ASD. As of right now, I haven’t found any evidence to that effect. And certainly a diagnosis would serve no real practical purpose, since I really don’t require any special accommodations for any ASD-like traits; it would only provide me a little piece of mind and maybe a point of reference. It also might help explain why there are concerns now with my younger son about the same sorts of characteristics, and it would definitely help bolster a family connection.
By far, the most frustrating thing for me is the desire for answers where none are to be found. But like many things in life, I have to learn to deal with situations that are not ideal and be satisfied with not knowing for the time being. And certainly, I have to keep in mind that a diagnosis for me wouldn’t change anything about who I am, nor would it change who my boys are.
If we’re all part of that 1%, then so be it, but life will still go on, whether we know or not.