Wednesday, October 6, 2010

Autism and Potty Training: Never Give Up Hope

Shannon Des Roches Rosa

My clearest memory of an autism professional's FAIL happened when I was told that if Leo, then aged five, wasn't potty trained by the time he was six, he would likely never achieve self-sufficiency. Yet in the four years since that proclamation, our boy has completely mastered every aspect of toileting. Sure, he wets the bed occasionally, but so do plenty of neurotypical nine-year-old boys. That autism expert can, on matters toileting-related, kiss my ass.

We were lucky; we had the staggeringly competent behaviorist Supervisor M leading my son's home therapy program and countering the expert's declaration. She held my hand when I sobbed that Leo would never be potty trained because that autism expert told me so. Supervisor M reassured me that, in her considerable experience, kids like Leo can and do potty train -- but they need rigorous support and a lot of patience. Sometimes years of patience.

Supervisor M's practical outlook for potty training, and our patience and Leo's hard work have paid off. Let me tell you how we all went about achieving total toileting domination.

We readjusted our expectations, as we have for so many aspects of Leo's development since his autism diagnosis -- an accepting rather than pessimistic attitude. We knew that since Leo has delays, many of his milestones are stretched out or delayed as well. We set realistic goals for Leo and toileting: gradual successes while anticipating occasional regressions.

First, we looked for signs that Leo was ready to potty train. These signs were more subtle for him than for neurotypical children, because Leo is not conversational. At the beginning of his toilet training, he did not notify us when he needed to use the bathroom. So we looked for physical signs, and initiated his toileting proceedings at aged five, when he stopped tolerating wearing soiled pullups. (You don't really want to know how he demonstrated his readiness, do you? "Messy" would be a euphemism.)

Then we set up in-home potty boot camp. Telling him why he needed to use the toilet didn't really register, so we would wait until we thought he needed to go (usually an hour since the last time he went), then walk him over to the toilet and help him situate his naked bottom atop it. While he sat on his throne, we would let him watch a favorite video on my laptop until he produced -- that way he could see for himself why using the toilet was a good idea, and so much less icky than going in his pullups. And every time he produced, we gave him huge positive reinforcers: M&Ms, goldfish crackers, hugs, cheers -- sometimes all four.

His home ABA team backed us up not just with the toileting, but with its peripheral aspects -- of which there are so many, and which because there are so many can be overwhelming for kids like Leo who need extra time and support to process sequences. Like wiping (and checking for effective wiping); pulling up underwear first, then pants; and washing hands (multiple steps). We encouraged him via reinforcers with his post-toileting routine as well.

Once he started using the toilet reliably and compliantly, we took him out of pullups during mellow at-home times, and during his home ABA therapy sessions. He still wore pullups in the car, about town, at school, and at night. Then, when he started demonstrating that he could stay clean and dry for two to three hours, and was regularly letting us know when he needed to use the toilet (that magic spontaneous phrase, "Go to the potty!"), we gradually reduced pullup use until he wore underwear all day long. This transition took several months, during which time we tapered off his reinforcers as well.

When he was under stress and had regressions, we would ramp the reinforcer system back up, so as to reboot his motivation. To those worried that their children will become completely reinforcer (some might say "bribe") dependent, I will note that: 1) we've always been able to successfully fade out reinforcers, i.e., gradually stop using them, and 2) what do you think causes more stress for you, your child, and your household: cleaning up a poop- or pee-covered kid, or giving that kid a small treat for potty successes?

The final frontier for Leo was wearing underwear at night. And I have to be honest, I never considered this milestone a guarantee. Leo had a two-year stretch between the time he started strutting around in underwear all day long, and the time he became reliably dry at night. But, as of a month ago, he was waking up dry almost every morning, and we knew it was time.

It hasn't been breezy for Leo or for us, living this pullup-free lifestyle. Leo really protested changing his nighttime routine and giving up pullups -- we had to wait an extra ten days to begin Operation Bedtime Underwear because Leo knew exactly how many pullups were left in his drawer, and that he would be using one every night -- there was no donning of the bedtime underwear until all his pullups were gone. But he did make the change eventually. And I think that the extra laundry is worth both the money we're saving on pullups, and the dramatic demonstration of Leo's ongoing ability to master new skills. As with all matters autism and development-related, it's important to remain open to success.


A version of this essay was originally published at