One of the central questions about the increase in autism diagnoses over the last few decades is whether there is any actual increase in autism due to some environmental factor, or if it is merely diagnostic substitution that has caused an apparent increase. And often people on the autism as epidemic side of the debate will ask, “Well then, where are all the autistic adults?”
I think many of them might be in my family, for starters. There’s my dad, who taught me the pythagorean theorem (or tried to anyway) when I was three, but does not know how to answer the question, “How are you?” He will bore you to tears on any topic of his choosing, and you will find yourself unable to change the subject. Then there’s his dad (my grandfather), who beat computers at chess, disgusted at their silly errors, but lived mostly as a recluse in his Manhattan apartment for as long as I knew him. And I hear tell of Grandpa’s brother, who I never met, Uncle Jim who built robots and was, as they used to say, “odd.”
It would seem high functioning autism or Asperger’s runs in families, by my own anecdotal evidence. But none of the men in my family were ever diagnosed with it until my son came along. As you can imagine, I fall squarely on the diagnostic substitution side of the debate.
When my brother and I chat, it is often to try to figure out the crazy people we grew up with. And as we got older, we wondered more and more if Dad might have been on the spectrum. I brought it up once at a gathering of cousins, specifically my dad’s nephew, a physicist who worked for the Pentagon. His wife, a speech therapist who often works with spectrum kids, jumped on the bandwagon. She said she believed all the men in the family were on the spectrum, in perhaps some “subclinical” way.
Indeed, one could make a case for overdiagnosis. My son has some issues, but are they worthy of state and federal funding for early intervention? The local Regional Center believes so, and so does the school district. But draw the lines differently, and he might be a bit different than most but not necessarily in a way that requires special classes. It took evaluators longer than normal to figure him out. Regional Center needed to observe him a classroom. Our private clinic asked for one extra session with him. He’s a borderline case, really, but nevertheless we got the free services that should make him “better.”
Right before Dad met our son for the first and only time, my husband and I had just taken Zack to his first dentist visit. We got the news that Zack’s upper lateral incisors had not appeared in the correct order, and that this meant he would actually not ever get them. But then a few days after the dentist visit, the left incisor came in. The right never appeared, and the two teeth on either side grew close to each other. So you really cannot tell that there is a tooth missing, unless you look closely.
The news about the tooth was hardly traumatic. But it was conversation worthy, so I brought it up to my dad. And as I was finishing the story, Dad said, “You mean like this?” And he smiled and revealed that he is missing the exact same tooth, on the same side. In my entire life I had never noticed.
And at that moment, my heart sank just slightly, because I realized that we can never escape the legacy of our genetics. And right then, that was the very first time I wondered if Zack was going to be autistic. It was long before we had any reason to suspect.
For a long time, we thought the echolalia would fade and he would start developing language more typically, or that he would just outgrow his extreme fear of loud noises, and that his preschool teachers’ concern over how he liked to play alone was just unwarranted–so what if he liked to play alone? But now when I bring Zack to his weekly social skills play group, it seems so obvious that he shares traits with the other kids around him, although his are so much more subtle. There is the girl who comes in showing off a toy she just got. “Do you see my new toy that I just got in Little Tokyo? I named him Yugi Shoko, which is a made up Japanese name. Isn’t he cute?” Without waiting for a response, she goes to the next person and says the exact same thing, in the same tone of voice, sing songy, too loud, a recitation. My son does this sort of thing all the time, although his echolalia is thawing and he is able to converse somewhat now. One of the preschool teachers told me, when Zack first started at his crunchy hippie preschool, that they had the same conversation, day after day, about his red lunchbox. “I have a red lunchbox. Do you have a red lunchbox?” Same phrases, no variation.
The girl with the Yugi Shoko toy walks over to another girl who is slouched on the sofa, chewing on her hair, waiting for her playgroup director to arrive. “I named him Yugi Shoko, which is a made up Japanese name. Isn’t he cute?” A pause. The girl chewing on her hair has heard the Yugi Shoko girl recite this story about five times now. Chewing Hair girl says, sardonically, “Well that’s awkward.” And she is correct, but there is something about her delivery that suggests a repeated bit of dialogue from somewhere else as well. She has trouble connecting, so she relies on a sarcastic attitude to see her through.
When we get into the playgroup room, my son plays with two other boys in his group. One is a high energy kid who goes on and on about aliens and can’t sit still. If any question about a letter of the alphabet comes up, he recites the entire alphabet and has to run around the room.
I recognize all these kids from my own elementary school. I feel like I’ve met them all before. They were the various odd kids we didn’t understand back then, the socially awkward daughter of our Girl Scout troop leader, the quiet boy with the terrible handwriting who was always getting criticized by the teacher of my “gifted” fifth grade class, the slouched over tall girl who shared the front of the line with me on picture days, but with whom I could never muster a conversation.
Both the directors at my preschool have told me their own sons would most likely have been diagnosed on the spectrum, if the diagnosis had existed when their sons were kids. But one of them also insists, “We see so much of it now. I think it must be environmental.”
I disagree, although I am not 100% sure. I think we see so much of it now because we know what we are looking for now.
I don’t know if my dad repeated entire passages from television shows instead of coming up with his own sentences. I don’t know if he could do puzzles fit for a 5-year-old before he was four, but at the same not was not able to answer simple questions about a picture in a book. I’m not sure if he was ever considered impaired or handicapped as a kid. I know he is a bit of a odd guy who I’ve never really known to have close friends. And I could not officially diagnose him as high functioning autistic, although whenever evaluators have asked about a family history, I do mention him.
I believe it’s the diagnosis, not the incidence, that has increased, even as I catch myself wondering if I served too many meals on plastic plates or fed my kid breast milk somehow polluted with the legacy of my young adult life. I don’t think I can stop wondering if there is an actual increase, and I’m certainly open to evidence that there might be. But I feel like I know these kids, and I’ve seen them before, and now they are just getting attended to, at least in the best way we know how to attend to them in this era.