Potty Training 9999: Unique Autism Challenges

It’s finally happened. After 6 years and two months of using diapers Buddy used the potty at home. And let’s just say, it was a long, frustrating road, made more difficult by the fact that despite all of my reading and researching, I couldn’t find anyone detailing the same problems I was seeing who could tell me how to approach it. Even the experts were either unhelpfully condescending or baffled.

Buddy is mildly autistic. And all of his other self-help skills are either on target or advanced for his age. For an autistic individual, Buddy has a huge independent streak. He can pour his own juice and make his own cereal for instance. And Andy and I encourage this because we want him to be as self-sufficient as possible. So the lack of progress on potty training was baffling as it was frustrating. Especially as he got older and it became embarrassing to admit that he is still in diapers, not to mention the fact that we can’t put him in classes through the local rec center because they expect kids his age to be potty trained. So it’s impeding opportunities for him to socialize with other children.

This was also a major source of frustration when he went to public school. His teacher insisted he was refusing to use the potty to be vindictive and defiant. She would talk to me after school about his bowel movements in an attempt to convinced me that he was punishing them by making them change his diaper. This is one of the reasons that one of my basic requirements for sending him to any sort of school ever again be that he is potty trained. His special education pre-school teacher’s attitude contributed a lot to the anxiety he was experiencing there, and I think made the potty training thing worse.

But it was before he even stepped foot in her classroom that I got a taste of the problem. Buddy was three, and I was pregnant with Sissy. Andy and I wanted to get him out of diapers in time for Sissy’s arrival so we wouldn’t have two kids to change. So, during Christmas break, we let him run around without a diaper.

This is when I realized that he understands when he needs to go, but he wouldn’t step foot in the bathroom. And I knew this because Buddy was perfectly fine running around the house without a diaper until he had to eliminate. Then he would run to the changing table and scream. Attempts to get him into the bathroom were frustrating and involved a lot of tantruming on his part.

At the end of the second day, we actually got him to sit on the potty and eliminate. He was upset the whole time, but we thought that if he did it once he’d be more willing to do it again. The next day we were deflated when he just went wherever he was standing. He was doing worse on his third day of potty training than he was on his first! I got the diapers back out and worried that I had pushed him too hard before he was ready.

Through the years I’d had many more times to observe that he can tell when he needs to go. While bathing or playing with water games he will often get upset if he needs to go and ask for a diaper. But getting him to sit on the potty was useless. He would tantrum and insist on having a diaper. If I put his diapers away, he would take Sissy’s diapers and put them on, regardless of the fact that they were too small for him.

And for the life of me I could not find anyone in a similar situation to me. The experts at Buddy’s school kept talking about picture charts with step by step instructions on how to potty. I thought it was ridiculous because I would read books about going potty with him and he would list those steps with me. When I described the problems I was having, they would ignore all of my observations (I am a master’s level trained counselor, so I found this extremely infuriating), not offer me any suggestions on how to get him into the bathroom without tantruming, and would go back to the damn chart.

I tried putting the chart up, but Buddy tore it down within a day. Didn’t help in the least and became another mess for me to clean up.

The other thing I tried that I was sure would work was having Buddy change his own diapers. I figured that having him put the effort in cleaning himself up would force him into a realization that using the potty would be easier. Well the joke was on me. He had no qualms whatsoever about changing his own diapers, and would often spend 15 minutes standing in front of the changing table doing so. He’d put the dirty diaper in a grocery bag, wipe and put the wipes in the bag and then throw the bag in the garbage can in the garage with either Andy or I supervising to make sure he was clean enough or, a more common problem, not just continuing to go through the wipes until he went through a whole bag.

Finally we got him into Easter Seals last February, and for once someone listened to me when I described the issues we were having. And when I voiced my concerns that by pushing it too hard it would backfire, I was validated. Buddy, like a lot of autistic kids, needs to feel in control of his environment. Forcing the potty on him was threatening that sense of control.

They first tried having him sit on the potty for certain time intervals, but they started to realize that this was backfiring and backed off. The other thing they noticed, that I really had not though when they brought it to my attention it made sense, was that Buddy was having a difficult time transitioning. This is also typical for autistic children. So for a few months they stopped all potty training activities and worked on helping Buddy transition. They would do this by taking him from an activity and just walking to the bathroom to make faces in the mirror, or walking to the vending machine, or walking to say hi to the administrative assistant.

I started noticing that things got a lot easier in the mornings. It used to take an hour to get Buddy ready to leave. After they started working with him on transitions, he could get ready in under fifteen minutes.

They had a specialist from the local university come out to observe them, and he noticed that Buddy also had difficulty figuring out what he is supposed to be attending to, another thing I’ve noticed but was at a loss as for how to describe. They started working with him on attending.

Towards the end of December, his case manager told me that it was time to send up underwear instead of diapers to Easter Seals with him. They’d done as much prep work as they could, now was the time to force it a bit.

I agreed, and did so. The first day he had a few accidents but he also used the potty several times. And at the end of the day they saw him do the potty dance but insist on a diaper because he knew he was going home because he’d seen me in the lobby waiting for him (after having the school discount my observations I always like to rub it in a bit when a group of autism professionals notice what I’ve been saying all the time). I worried there would be some backlash during the second day, yet, there wasn’t. He did great! He had no accidents and used the potty several time. And every day he’s gone to Easter Seal’s since he’s used the potty without any accidents.

The part of me that is ready to be done with diapers wants to hide his diapers and break out the underpants at home. However, he says he wants to wear diapers at home and we don’t want to push it too fast and provoke a backlash. Next week I’m meeting with his case manager to figure out the best way to take his potty training success from school to home.

Yet today, even though he was wearing a pull up, he told me this morning that he had to potty. So I walked to the bathroom with him and he sat down and did it!

I was wildly excited! We called his daddy and Buddy proudly told him that he went pee pee in the potty and asked for a high five. I’m hoping that even if he insists on a pull up at home he’ll continue to use the toilet and that when we finally take away the pull ups he’ll accept the brief without a fuss.

Things I wish the “specialists” at Buddy’s school would keep in mind is that every autistic child is different, and what works for one does not work for all, and parents’ observations about what is going on with their child are valuable. While Buddy is autistic, he’s very different from the stereotypical autistic person. He’s sensory seeking rather than sensory avoidant, he’s extremely expressive and loving, and he tends to get step by step sequences easily. His problems were transitions, attending, and his need for control over his environment, none of which were going to be solved by a picture chart or talking to me in front of him (Buddy’s receptive skills are stronger than his expressive skills) and trying to convince me he’s an evil defiant child.

For parents struggling with potty training issues who recognize their own child in what I describe with Buddy, start with small steps, such as transitions to the bathroom to make faces in the mirror. And if you can, get your child to a specialist who listens to your observations and incorporates them into the plan they create for helping your child. From my experience talking louder does not work with someone who is out of their league and suggesting one sized fits all approaches.

By the end of the month I am hopeful we can ditch diapers. Sissy is 2.5, and on the border of being potty trained herself, and I think when she sees her big brother using the potty it will encourage her to use it. Looking forward to the upcoming world of parenting children out of diapers!


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