Schools and (Lack of) ABA Therapy — What We Think Helped Our Son with Autism

So last week, I wrote about what my son, Newt, was like as a young child and what led us to get him tested for autism. This week, I’ll give you the not-so-brief rundown of what we ended up doing for school and what we didn’t do for therapy.

On the day he was diagnosed as having high-functioning autism, we stepped out of the psychologist’s office with some working knowledge of the therapies that were out there and a great big bag of skepticism. You have to remember this wasn’t our first rodeo. We’d been dealing with my chronic pain issues for about a decade, and had experienced more “fixes” than we could count.

The Section Where I Basically Bash ABA

So when the psychologist told us the diagnosis, recommended Applied Behavior Analysis (ABA), and kicked us out the door, we were devastated. But we were also kind of pissed. I’d read up on ABA a little, and it kind of seemed like, frankly, a load of crap. Forty hours a week, lots of sitting at a table with a therapist, and kids doing stuff in return for stickers or M&M’s. Talk about depressing as hell (this video sorta makes me want to cry). And we’d have the pleasure of paying around $30,000 a year for it. Awesome.

We heard later that based on how “moderately affected” Newt was (I love how now that he’s “fine” he was moderately affected, but he was “most likely unable to ever live or function on his own” when he was first diagnosed), his therapy probably would’ve mainly consisted of play. Like going to the park and teaching him to go up and down a slide. Which frankly makes the idea spending $30,000 sound even more ridiculous.

That said, we have friends who’ve done ABA, and it’s worked for them. Or, I should say, their kids have gotten better. Whether or not it was the ABA or just growing up, we’ll never know. Because as I’ve said before, you can’t exactly do double-blind comparison testing on this sort of thing.

From our viewpoint, our son had these major problems: he didn’t understand us, we didn’t understand him, he couldn’t “bring himself down” when something ticked him off, and he had no ability to play imaginatively or with other kids. Looking at it logically (because my husband and I are very Mr. Spock-like), the reasonable response to fixing those problems was to keep at the speech therapy (he was already in the county school program), keep at our relentless parenting technique of being totally hard on him and totally consistent (and put the screws on even tighter), do small things to “annoy” him and teach him how to calm himself down, and put him with other kids and adults as much as we could possibly stand (and I say “we” because it honestly had to do with how much stamina we could muster).

Newt had never been a “reward” centered kid. We’d tried various treats to get him potty trained and failed miserably. And then there was this fun little behavior: if we finally, after a lot of effort, got him to do something he didn’t want to do and then congratulated him (“Good job!” or “High five!”), he’d go ballistic. It was like he’d given in and couldn’t stand it.

Not to mention, our entire philosophy of life goes against the idea of extrinsic reward. We believe, for example, that paying kids for good grades or giving them a special treat for practicing some sport or instrument sucks all the drive right out of them. I mean, no one’s cheering me on for doing the laundry, cleaning up the dishes, or even writing this post. At the end of the day, I have to motivate myself to get it done.

We wanted to teach Newt to navigate the world, control himself, and communicate. We wanted to teach him to “behave” for the sake of behaving, not because someone was watching him or ready to hand him a treat.

I know — so easy to say…

Anyway, the idea of ABA sort of made us cringe. Not to mention, it was the only therapy proven to help autism. As major skeptics, this really pushed our buttons. Because, again, how do you really prove that.

And here’s the thing — if I were going to run a scam, I’d put together a program for a nebulous disorder that people were desperate to fix but that often improves on its own. Then I’d make the program “difficult” to get into because everybody wants what they can’t have. Then I’d talk about how much better everyone who’d come out of the program was doing. And I’d make it expensive as hell.

So we decided to keep on keepin’ on and go against “professional advice.” Scary as hell, but we felt deep down inside that it was the right thing to do. I have a friend who’s a teacher, and every single time I’d talk to her about how unsure I felt about our decisions, all she’d say to me is, “You’re his mother — you know him best.” It was the only thing I needed to hear.

The Schools

From age 3 to 5, Newt attended our county school system’s developmental preschool program four afternoons a week. It was a reverse mainstreaming class, so there were “typical” kids with him who were meant to model behavior. He also got two speech therapy sessions. We dropped him off and picked him up every day with Elfie in tow, and the teachers liked her so much that they stuck her in the class for his last year (she was sooooo happy).

I think this program benefited him because of the structure, the interaction with other kids, the speech therapy, and the teachers. They were — hopefully they wouldn’t be offended — older and had seen the uptick of autism “diagnoses” that had occurred over the years. I think they could see Newt for who he really was — a kid who needed some extra work and more time to get his brain wired.

From 3 to 4, Newt also went to a private preschool a few days a week in the morning. The place experienced some weird ownership changes that I won’t bore you with, but the long and the short of it is, he had more exposure to kids (and when I say that, I mean in a cursory way — he was really in his own world, just doing his own thing). There was one aide there who took specifically good care of him. She just seemed to understand his need to be mellow and left alone. I never told them about the autism diagnosis. I just opted to put out fires as they sprang up.

When he was 5, we found a Waldorf preschool/kindergarten where he and Elfie went for a year-and-a-half. Waldorf is kooky, I’m not gonna lie. But I honestly believe it was one of our best choices. When you’re surrounded by teachers who have high expectations about your parenting and a community that’s of the same mindset, you can’t help but change your behavior.

• It got us to stop watching TV. This ended up making a HUGE difference in Newt. We realized he was essentially addicted to it. He’d get cranky and angry when he we’d make him stop watching — like he needed a fix. Plus the increase in the amount of time he spent playing or interacting with his sister or us was forced to increase, and he couldn’t pick up anything else to mimic.
• It got us eating better. We’d always been pretty good about what we fed the kids and cooking at home, but this kicked it up a notch.
• It got us outside more. They take the kids outside no matter what (unless the weather is dangerous). Indoor recess isn’t heard of.
• It taught Newt imaginative play. They school doesn’t have traditional toys. They have “stuff” that kids use for pretending, like scarves, blocks of wood, and little kitchen items. I can still remember the first time Newt came home after just a couple weeks of school, put a blanket around his neck, and started playing super hero. It was literally the first time he’d ever pretended to be anything.
• It helped Newt “hear.” They don’t read books with pictures to the kids. They tell stories and the kids have to imagine everything on their own. Over time, the stories slowly come into focus as the teachers show them what different details are through everyday interaction. Both of the kids have great imaginations, reading addictions, and story-telling skills, and I’m pretty sure this is one reason for it.
• It’s all very magical. There are candles and bells and stories about light fairies.I don’t know about anyone else, but I’m happy to keep that alive for as long as possible.

For whatever reason, during our long discussion with the teachers at the school, we ended up telling them about Newt’s diagnosis. This was a big deal for us because for the most part, we didn’t tell anyone. Our philosophy was that once someone knew, they’d subconsciously start treating him differently. But these women seemed different.

Over the course of our time there, we had various issues — they’re ardently against violence of any kind, and when you have a boy who loves turning sticks into swords or playing “fighting,” it can get a little dicey. We’ve had similar issues with Montessori. What can I say — he likes action and adventure. He likes pretending to fight, drawing fights, and writing about fights. I’ve raised him with a little sister and given him access to all the “girl” toys, which I believe he’s played with much more than his peers. But he is who he is.

Anyway, before his kindergarten year, he was officially released from the county’s developmental program. The school psychologist ran a battery of tests, we and his teachers filled out questionaires, and it was determined that he. . . wasn’t autistic.

We were happy but not surprised.

The options were to enroll him in public kindergarten with 30-plus kids or keep him at the Waldorf school. So we stayed put with the idea that if he had another year in a place where people could “build up his spirit,” he’d be in better shape for the big, bad world.

And it worked. A year later, without an IEP or any discussions with the teacher about “problems” she might encounter with him, we walked him into his 1st through 3rd grade Montessori class. It was terrifying. He looked so small. One of the 3rd graders came over to him and offered to give him a tour and he just put his head down and shook it. We walked out and I started crying.

When we picked him up, he ran out the door to us with a huge smile on his face. He told us he’d had the “best day ever.” And every day that week was deemed “even better than yesterday.”

Since then, we’ve had our ups and downs with school — mainly because I have extremely high expectations when it comes to my kids, and it makes me (and my husband) insane. I have, however, taken up the mantra,”Don’t let the perfect be the enemy of the good.”

Incidentally, I don’t want to give everybody the impression that it was all sunshine and roses when they said, “You’re free and clear” on that lovely June day in 2008. Our work was nowhere close to done (and still isn’t). Newt continued to be an extremely difficult, strong-willed, quirky kid. But then, so are his parents. So really, the kid kind of doesn’t stand a chance…

But for the most part, Newt has been holding his own. Just like everybody else, he’s finding his way and navigating his own ship.

And we’re slowly but surely letting go of the wheel.