Another “outing” (I never realized how many things I didn’t talk about until I started this blog). Some of you know that Newt was diagnosed as having high-functioning autism/Aspergers Syndrome at age 3. Most of you who’ve met him within the last two years would, I’m guessing, be shocked to hear that information. Whether you spend 5 minutes or 5 days with Newt, it becomes clear that not only is he a “typical” 6-year-old (I love that word, typical — it’s a favorite among psychologists and educators) but a rather outgoing, creative, crazy little goofball at that.
Newt had a speech delay around age 2 that made me think something wasn’t exactly right. That, coupled with a gut feeling that some of his behaviors were a little weird, led me to have him tested at an early intervention program, and he ended up in speech therapy at our public elementary school. So began the saga — expensive psychology consults, crazy therapeutic recommendations, endless school searches, kooky diet plans, and unending internet research that felt comparable to working on a master’s degree.
So why am I writing about this now? I suppose because I finally can. When we were in the thick of it, I couldn’t share all of what was going on with even some of my closest friends and family because whenever we told people about “the diagnosis,” they inevitably started treating him just a little bit differently (can’t be helped — it’s human nature). And being treated differently from other kids was the last thing we wanted for Newt.
After hearing the diagnosis, we freaked out for a period of time, grasping at just about everything we could get our hands on. Finally, one of us (probably Tenzin) grabbed the other by the shoulders and yelled, “Pull yourself together, man!” And then we actually got to work. What followed was the last 3 and 1/2 years of our own “therapy” for Newt. Stuff that seemed really obvious to us but apparently not to many of the people who work with autistic kids. So are we special? Possibly. Lucky? Probably. All I do know is that if Newt really had autism — and here’s where I open up the Pandora’s Box — we’ve cured him.
I can’t count how many times I’ve heard about a kid like Newt. The most recent one was in the New York Times. A woman wrote in about life with her 5-year-old son with Aspergers. It was, well, sadly familiar. Minus the glass throwing (because there was no way in hell we ever had any free glass around Newt) and swearing (we really tried to watch it around him, due to his excellent mimicking abilities). Add in “not potty trained until age 5,” and you’ve got yourself a match. Anyway, whenever I read or hear someone describe their kid like this, I can’t help but think two things: 1) that sounds so much like my son — I know just how you feel, and 2) there’s hope — I wish I could come over to your house, meet your family, and help walk you out of this.
Big asterisk here: obviously the autism spectrum is huge and complex. I knew a woman whose son used to smear his feces on the walls. And I cannot imagine the pain associated with the father I once heard wishing his son would just say “Dad” someday. That has, thankfully, never been my world. To me, that is true blue autism. Not the diagnosis du jour that’s been tossed at my son and kids all over the country during the past few years. And here’s where I get into trouble again. . .
From my vantage point, Newt’s story has at least three possible explanations. One, he was autistic and we “cured” him. Two, he was misdiagnosed, along with lord knows how many other children, and has developed along his own individual path into a “typical” kid. Or three, he was misdiagnosed but indeed had multiple problems which we helped alleviate through our unconventionally conventional therapy. I’m sure any and all of those theories will piss off multiple people.
Ultimately it comes down to this. When Newt was 3, I took him to a gymnastics class where he proceeded to scream for an entire hour. New situations stressed him out. Loud noises bothered him. Today, he cruised right into a swimming lesson with a teacher he didn’t know while loud music played on the overhead speakers. So now I suppose I feel an obligation to explain how we got here. Because every time I read a story like the one in the Times, I feel a little sick to my stomach.
Tenzin and I definitely don’t have all the answers to help every child like Newt. But I think we may have some. So this is where I begin the Story of Newt (along with my other random life ramblings). If it helps even one heartsick parent who’s googling “autism” in the middle of the night, it’ll be worth it.