My Shrinking Boy: The Challenges of Maintaining a Healthy Weight on the ASD Spectrum

299.6! That's the celebrated number of the day. It's what appeared on the scale after son Fickle Fan's latest workout at the gym. And, yes, that's a GOOD number. It's what we're calling his sub-goal, and it's taken a long time to get there. But get there he did. 

Before all the health fanatics come out to pounce on me, yes, we know that's probably still what a physician might characterize as "morbidly obese," and, yes FF is still working on it. Thus the "sub" goal. But we're also extremely proud of him. He's lost at least 35 lbs. over the course of two years.

Slow process, and lots of weeks with the two steps forward, three back cha-cha. I know some of you out there understand. We have similar stories. The weight began to pile on when FF was about 9, when he began taking Abilify. (Note: I refuse to bad-mouth that drug--it was a life changer for FF and all of us; but yep, it came at hefty price. Ahem.) I don't know whether the med somehow physiologically causes weight gain or if it just causes the constant, never satisfied, all-consuming, ravenous hunger FF lives with, but the pile-on of pounds and a risk for diabetes is a nasty side-effect of that whole class of anti-psychotics.

I've read similar laments from other families. I've seen the photos of your teens on the autism spectrum who look a lot like FF. Big teddy bears. Or maybe grizzly bears. Teaching them to moderate their eating, encouraging them to exercise and getting them to step away from the video games is a huge challenge in the adolescent, young adult years. But it has to happen, because the alternative is a lifetime of bad habits and poor health.

So today, I watched FF get out of the car and head into the gym, and I noticed! Definite shrinking of that extra shelf he's been carrying around his waist for years. Good for him!

How has that happened? I wish I could just say it was just one thing, but it's really been a combination of approaches over the course of two years. The first was Weight Watchers. He attended meetings regularly for about a year, sitting on folding chairs amidst the mostly middle-aged women and listending to the pep talks. And though he just couldn't do the tracking that is essential to WW success, he did lose his first 25 pounds in the first six months at WW. Even more importantly, he learned a lot about the importance of lean protein, high fiber foods. (There's never a bag of chips sitting on top of our fridge anymore.) But despite the diet changes, quite a bit of that weight eventually came back anyway.

Beginning probably his sophomore year in high school, we also began weaning him off of Abilify (after the introduction of Intuniv). That too has been a very long, slow, careful process. For the past year, he's been taking 1/2 gram a day. (Have you ever tried to quarter those annoying little pills?) Finally, at 19, we've said buh-bye to Abilify.

But we're proudest of his newfound commitment to exercise. Since mid-January he's been working with a trainer at Anytime Fitness for just under an hour every week, and he pops into Anytime for two or three additional 30-40 minute workouts during the week. 

I can't say enough great things about Anytime Fitness, by the way. (Shameless plug, but no, I'm not being paid.) His trainer has been wonderful with him, teaching him the exercises, raising the expectation bar, and building his confidence. And she's willing to chat with him about sports--one of his big interests. Probably helps she comes from a large family. Plus he just likes being there. He's not intimidated, and we can just drop him off; he has his own key and knows exactly what to do when he gets in there. We were initially concerned that we would have to pay for two memberships plus an hourly wage to a peer buddy to workout with him, but he's fine on his own at Anytime. The staff and clients all accept him, and it's become a social activity. That's what community inclusion is all about.  

Soapbox Issue #647: Hey, researchers! I'd really like to see more of those dollars currently going into ridiculous cause studies diverted to effective healthy living strategies for young adults with autism (and their families). Talk amongst your funders!

Meanwhile, today's special number is 299.6. (Cue the Count from Sesame Street!)