Poop and autism.
It goes hand in hand. It’s not the most glorious of topics, but I can’t run an autism blog without the mandatory poop post. Type in “poop and autism” into Google and you’ll find thousands of sites dedicated to this subject.
Through the years of diagnosis and then later becoming a practitioner that works with children on the spectrum, I have met dozens upon dozens of families either in person or in the virtual sense. And the one thing all of these families have in common is issues with the bathroom.
It blows some people’s minds that a child with verbal skills or insanely good mechanical skills or artistic abilities could have such a hard time with toileting. Something that we all think is just an easy task. What people who don’t understand autism don’t get is that it’s not just about intellectual ability, it’s about all the pieces needed that go into being successful on the potty. Even children with high-functioning Aspergers can have difficulties with toileting and self-care skills.
Food allergies, constipation, diarrhea, gastrointestinal issues, different learning styles, sensory-processing issues, anxiety, and OCD all roll into one to make bathroom skills very tricky for kids on the spectrum to learn.
A huge percentage of children on the spectrum have allergies or intolerances that lead to gastrointestinal distress in the form of constipation, diarrhea, or both. Children on the spectrum are notorious for picky eating (really it’s at a level that is way more than just “picky eating”) and may not be getting the right nutrition and fibers to be regular. Children on the spectrum usually don’t learn through their auditory sense and do much better visually. Sensory-processing issues can make it hard to sit on a toilet seat or listen to the toilet flush. There is also the interoceptive sense (in addition to the seven other senses) that is impacted by sensory processing. The interoceptive sense refers to the body-centered sensory systems that can control our bladder and bowel. Anxiety forms and OCD patterns form that are so incredibly hard to break without cognitive-behavioral therapy.
Our own boy has suffered from all of the above. He has severe anxiety around bowel movements and becomes so severely constipated that it warrants a clean-out every so often. We clear our schedules and plan on three days of being home all day. We roll up the area rugs and make sure an adult is with him every second of those days. We wait with anxiety and anticipation at the mess we know is ahead and also at the possibility that if we don’t get him cleaned out his pediatrician will have him admitted to have it medically done. He then still has so much anxiety and is so impacted that it’s not until at least day two of heavy doses of laxatives that he’ll finally go.
He’s not an isolated case of this. I hear this story over and over again from my clients and my friends. Children who will hold it a whole week while on vacation because the bathroom is unfamiliar to them. The parents who have to give enemas at least on a monthly basis. Children who still won’t go even with laxatives at home and need to be hospitalized to be cleaned out. Children who smear their poop. Children who have such chronic diarrhea that their bottoms are red and sore.
We do special diets to help. We do visual schedules and social stories. Heck, I even got him a video model. We come at him from a place of love and understanding. We never add our own stress to his stress. We reward him. We do everything the specialists and therapists tell us to do. We can have a few months of success but then we always end up back to where we need to intervene medically with a home clean-out.
After a clean-out we always see an increase in language and social engagement. It makes my heart hurt to think that his upset belly gets in the way of these things. That he feels so badly that it interferes with his ability to learn and communicate.
Poop. It’s not a glorious subject. It’s not one I generally talk about a lot to people outside of my immediate family. But it’s another piece to this puzzle. It’s another piece that families are dealing with on a day-to-day basis with their children, teenagers, and adult children on the spectrum. And without clear medical interventions for children on the spectrum and assistance at home a lot of us just feel like we’re floundering.
Not glorious at all.
For tips and tricks I really appreciate these following links, hope you can find some relief within their insights!
- The SPD Companion- SPD & Potty Training
- TACA- The Poop Page
- Toilet Training- A Parent’s Guide- from Autism Speaks Autism Treatment Network
- Toilet Training for Individuals with Autism
- Autism & Toilet Training
- Potty Training a Child on the Autism Spectrum
- The Crappy Life of Autism (okay not a tips or tutorial page- but one that will make you laugh & cry if this is also your life)