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Real members of MyAutismTeam have posted questions and answers that support our community guidelines, and should not be taken as medical advice. Looking for the latest medically reviewed content by doctors and experts? Visit our resource section.
A MyAutismTeam Member asked a question 💭
Hortense, GA

My recently diagnosed son will be 4 next month and we have been trying to potty train for over a year now. Although he will sit on the toilet, he refuses to pee or poop in the toilet. We got rid of all diapers and got regular underwear & boxers and let him choose which he wants to wear. He's in head start and they use pull-ups there. He started asking for "ups" at home, considering he only says approx. 10-12 words, I generally give in and got them. He will wear his boxers most of the time at… read more

February 29, 2012
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Answer Summary

Members shared their experiences navigating toilet training with autistic children who refused to use the toilet, with many emphasizing that... Read more

Members shared their experiences navigating toilet training with autistic children who refused to use the toilet, with many emphasizing that progress often came much later than typical timelines, sometimes not until age 5 or older, and frequently when the child was finally ready rather than when parents pushed. Several members offered practical strategies including visual schedules and PEC boards for communication, taking clothing-free weeks at home to reduce barriers, having children observe same-gender parents using the toilet, moving pull-ups exclusively to the bathroom to create routine associations, and seeking specialists like urologists or GI doctors when children hold urine or stool for dangerously long periods. A recurring theme was the importance of advocating fiercely with pediatricians who dismiss parental concerns, trusting parental instincts about what feels wrong, and maintaining patience and persistence while celebrating even the smallest steps forward.

A MyAutismTeam Member

My son was almost five before he was potty trained. When he started school and was around other kids and saw what they were doing he was totally potty trained in about 2 weeks. Maybe let him actually see the process. I know my son learns by seeing.

July 9, 2012
A MyAutismTeam Member

So sorry to hear all that. The same ped that missed her birth defect also told me time and again not to worry about my daughter's delays because all kids developed differently. He was gone one day and I spoke to the nurse practitioner instead, and she referred me to Early Childhood Intervention, a state program we have here in Texas. They made an appointment to come out and evaluate her. Low and behold she was delayed in all areas and needed PT, OT, and ST. It wasn't until I took her to a developmental ped that we got the official diagnosis. And in the midst of all this she was struggling with her feet which we later found out was related to her tethered cord. Never let anyone tell you what they think they know about your child. NO ONE knows your child like you do, and you will have to be your child's advocate for years to come - with doctors and school and other children and the list goes on. I don't even know you but I am SO MAD at your pediatrician! Hugs!

March 5, 2012
A MyAutismTeam Member

Mooncaller, thank you so very much for your response and congrats! Unfortunately, we have had our Jeremy in Head Start and day care for almost a year now and being around the other kids hasn't helped with the potty issues at all. He still refuses.

July 9, 2012
A MyAutismTeam Member

That is so terrible that he missed her marker. I can relate to your complaint though, my ped kept telling me my son's behaviors were "normal" and that I was being over-reactive to "normal" toddler issues! I really wish someone could tell me exactly what "normal" is?! I begged, argued, complained, whined and did everything I could for over 11 months before I finally got him to send us to a speech therapist. It was the SP that called him and said there were several red flags for autism present and something needed to be done. Suddenly I got called into the peds office for a developmental assessment! When I asked why now, I was told that the behaviors were still what he (the ped) considered "normal" but he (suddenly) wanted to be thorough.
Even after getting the assessment done by a child psychologist, which showed very high (90-97) T-Scores, I have had to fight and beg for a referral to a developmental ped. Luckily I finally got one and we go the day after my son's 4th birthday, next month. My son stopped talking at 30 months.

March 5, 2012
A MyAutismTeam Member

How horrible that you are limited to that ped because of Medicaid. I wish you had more options. My daughter's ped, who is one of the most highly recommended ped's in our area, completely disregarded my developmental concerns and MISSED a physical marker for her tethered spinal cord. It is so maddening when ped's don't listen to mothers or take our concerns seriously! At the end of the day, many doctors are ignorant about the MANY medical implications of autism, and it's up to the parents to advocate for our kids and be the squeaky wheel that gets the oil. Perhaps if you are insistent and tell him straight out you'd like the opinion of a specialist you could get a referral. A urologist may be more knowledgeable and helpful. Our urologist gave us al kinds of ideas for a potty training regimen and really partnered with us.

March 3, 2012

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