The First Signs — How We Figured Out Our Son Had Autism

So for whatever reason — search engines, moving to WordPress, tiny elves — I’ve recently gotten several inquiries about my son, Newt, and all the autism stuff we went through with him in his “youth.” He’s now 10. So old.

I’ve been wanting to write the story of what happened with Newt for a long time, so this is really motivating me. But lord knows I couldn’t just do this. I need purpose. And deadline.

Anyway, a couple of readers have emailed with specific wish lists: 1) a more detailed account of specific behaviors that Newt was exhibiting when we first picked up on everything, and 2) what we did when we first got diagnosed. Let’s tackle the first one first so we have some perspective. I’ll hit number two next week.

The Backstory

Just to give a brief history, Newt was diagnosed as having high-functioning autism at age three-and-a-half. Since that time, he’s tested off the spectrum and is attending a “normal” school as a “typical” kid without any IEPs, aides, therapies, and whatnot.

I’ve said before that we (my husband, Tenzin, and I) don’t know exactly what happened with Newt. We have our theories. We know for a fact that he had some serious problems at age 3. Were they worthy of an autism diagnosis? Arguable. After experiencing what we went through and watching how the autism epidemic has “exploded,” we question how many kids are like Newt. In fact, a study just came out that adds some validity to the theory that there’s a percentage of kids who are diagnosed at an early age and then “grow out” of autism. The arguments surrounding this, as you may imagine, are complicated, emotional, and sorta nasty.

Like I’ve said before, I know that autism is real. I have other bloggy friends who describe their lives and their children, and it’s quite clear when someone has an autistic child. What I’m talking about here are those kids who are sort of on the fence. They’re the ones who are undoubtedly difficult kids, who definitely need extra guidance and attention, and who have clear developmental delays. But ultimately, it may be stepping over the line to say they have autism.

Anyway, enough with the blathering. Let’s get down to Newt…

In the Beginning

Newt was a “typical” baby. Or so I thought. I was a first-time mom with (I know now) some big-time post-partem depression. Everything was difficult, and I just assumed it was me. I didn’t even go to the grocery store with him by myself. I was too afraid that he’d start crying and I’d have to leave a basket full of stuff.

There was always something about him that just seemed a little distant. He’d look at you but almost through you. Actually, he still does that. So does his father. It’s because they’re thinking. It’s annoying as hell.

We nicknamed him “Boo,” and the idea that he had “name confusion” became my excuse for why he’d never turn when we called him. And laughing? He laughed. But it wasn’t that super crazy laughing like kids do when you sort of get in their faces. Sure, I have tons of pictures of him smiling. But that’s the beauty of having a digital camera and a Mac. I’d just delete the pictures that caused me any stress and keep the ones that fit my view of how the world should look. I even bought an SLR camera because our other one had that half second delay, and I kept missing those little moments when he looked fine. My excuse was that he was just so fast…

He could concentrate for what I think were exceptionally long periods of time for a baby. If you gave him the “right” toy, he’d stare at it and mess with it for 20 minutes. He was literally hypnotized by Baby Einstein videos. Looking back, this probably set us back farther than we’d have liked. But I was exhausted, and having a half-hour break was golden.

As soon as he became mobile, we had to baby proof EVERYTHING. We’d always planned to be those parents who lived the same way we always did and just told our kids what they could and couldn’t touch or do. This became hysterically funny. Newt responded to none of our teaching. I remember going to a friend’s house (she had two little girls) and being amazed by the fact that she had picture frames on low tables. That she had anything on low tables. We’d stripped the place.

We never had any particularly glaring food issues, but Newt liked what he liked. I chalked it up to baby food being disgusting. He was fine with just about everything until we got to that really gross stuff that combines different foods together like some kind of chunky stew. Hell, I didn’t want to eat that stuff, so it didn’t make me question why he wouldn’t.

But he was particular when it came to one thing — breast feeding. We’d made the mistake of falling off the wagon and letting him only breast feed and never use a bottle for a few months even though he was already all dialed in an used to both from the very beginning. So I was basically being held hostage. We decided to “break” him of this one day, and he went 19 hours without drinking. After that, whenever I heard anyone talk about having a “strong-willed” child, I sort of laughed my ass off inside.

He started walking right before his first birthday. He seemed like a “normal” toddler, so I went ahead and got pregnant with baby number two. That’s sort of when all hell broke loose.

The Real Fun Starts

I think all parents are a little stressed about taking really young children out in public. But we knew that if something set Newt off, we were screwed. He’d be inconsolable. His tantrums — his meltdowns — could last an hour. He’d scream hysterically, flail around, throw things. He basically looked like a crazy person. And anything could set him off — getting hurt (although he was remarkably “tough”), being in his stroller, having something taken away, being told no, leaving somewhere, arriving somewhere, taking a bath, being strapped into his carseat, being tired, being hungry, hearing loud noises, seeing “weird” objects, wearing hats, posing for a photo. . . You name it, Newt got upset about it.

We slowly became complete homebodies. The only people who really babysat him or even spent time with us were my parents, some close friends who, strangely, didn’t have kids but just “dealt” with him, and a girl in her 20s who thought he was fantastic.

Newt started talking at around 10 months. At first, it all seemed pretty normal — words for specific objects. Mom, Dad, dog, cracker. But his vocabulary wasn’t growing very much. He wasn’t really putting two word sentences together, and the sentences he did manage to say were copied off of his TV shows. And most of his words were words other people couldn’t really understand — which wasn’t completely weird for that age.

I think I really started wondering if something was wrong when we’d hang out with other people and their kids. Other children (and I see this now) understood what you were saying. You could tell them to stop doing something (they wouldn’t necessarily do it, but they’d sort of react). You could point at something, make a comment about it, and see that the wheels were turning. You could give them little tasks or directions. We couldn’t do any of this with Newt.

And time-out was a joke. That little dance they do on Super Nanny where the parent puts the kid in the naughty chair and then they get out and the parent puts them back in and the key is to just “keep doing it”? Yeah. We didn’t even get to the “walk away” section of that little exercise. We eventually ended up using our travel car seat and strapping him into it. But more on that later.

His other little idiosyncrasy was praise. He hated it. He went completely ballistic if you told him “Good job!” or “Yay!” in a happy voice. It was like he’d bent to your will and just couldn’t stand the idea. Incidentally, you have no idea how often people say stuff like “Good job” and “Yay” to little kids until you have one who doesn’t like it. Anyway, our options for getting him to do what we wanted him to do were fairly limited. No positive reinforcement and pretty distasteful negative reinforcement. Good times…

The First Evaluations

I took him to Early Intervention for evaluation when he was 2-and-a-half. Newt wowed them with his ability to identify all of the barnyard animals and their sounds in Spanish and English on this little electronic game that he was obsessed with at the time. They reported a 25% delay in his speech but didn’t think he needed any developmental therapy. I was relieved to have someone tell me everything was okay, but in the back of my mind, I still knew something was up.

When he was almost 3, we took him to see a friend/colleague of my husband’s who was a child neurologist. Ironically, we’d sat with him and his wife at dinner years before when we didn’t have children and joked about how we hoped we’d never need his services…

Newt had been waking up in the middle of the night and sometimes during naps with what appeared to be night terrors. He looked awake and alert, but he was hysterical. He’d scream, cry, and be generally agitated and inconsolable for about 20 to 30 minutes. Fortunately, that phase didn’t last for too many months.

The neurologist diagnosed him with an expressive speech delay (along with a sleep disorder that was improving). Newt did extremely well at the evaluation. He was like that — sometimes it seemed like he could snap on a switch and suddenly “hear” you. He followed directions like, “Draw a line” and “Where’s your arm.” But his communication skills were deemed “immature” for his age. He still used a lot of “jargon,” as they like to call it (basically words he’d made up) and repetitive language. The doctor recommended speech therapy.

This led us to “Child Find,” the next leg up from Early Intervention. They ended up finding significant enough delays in Newt’s speech to qualify him for the public school’s pre-school speech therapy program. We were to go for 30 minutes, twice a week. But after our first session, the speech therapist offered to enroll him in their preschool program — four days a week, half day. Clearly she saw that he needed more help.

School Starts

By age three, when Newt started developmental pre-school, he was still having major tantrums, wasn’t potty trained, and only drank out of one specific type of sippy cup. He could work a computer mouse better than his grandmother (he’d been doing that since he was 18 months old), build complex train routes with his extensive Brio collection, and recite the entire “Little Engine that Could” book. But he couldn’t hold a conversation with you. He might answer one question and then follow it up with a quote from a Thomas the Train movie or an expression that contained some really strange intonation — like a rise in his voice at the wrong time. And he’d gesture, but usually not for the right reasons.

If we went anywhere new, he hung back and wouldn’t engage in whatever was going on for a long time — sometimes more than an hour. On the rare occasions when we went to birthday parties, sometimes he wouldn’t start doing the bounce house or ball pit or whatever until it was almost time to go. He was never drawn to the “thing” we were supposed to be focusing on. If we went on the Santa train, he’d be interested in anything but Santa. If it was Christmas, he’d be playing with the train set, not opening presents. If we went to the zoo, he’d be checking out the pavers in the sidewalk and ignoring the animals.

And as much as he played with his trains and Bob the Builder vehicles, he never really made anything up. He’d re-inact shows, but nothing changed. He’d do things but never pretend anything. He’d use a play tool set to whack something or imitate Bob, but he wouldn’t come up with anything original.

Newt also didn’t really care about playing with anyone. The funny part was that he’d insist on having you there, watching him, but he wouldn’t want you to interfere. He liked things in their place — he knew all of his trains obsessively, would put them in their carrying case or on the track however he thought fit “in his mind,” and wasn’t a fan of you screwing around with it.

He wasn’t interested in his sister. Or any other kids for that matter. He was perfectly happy playing alone, and it was actually pretty stressful having anyone around.

And still, after all this time, he still really didn’t respond consistently to his name. Whether he was always off in his own little land or it just didn’t register, we’ll never know.

After a few months in preschool, his teacher all but told me we should have him evaluated for autism. That’s when all the good times with the child psychologist started. But that is another story…