Content Note: This post will contain medical terms and other vocabulary related to going Number Two, if you’re okay with that carry on.
Additional Note: I am not a medical professional, but a parent of a child with autism. This is not medical advice, but based on my research and experience in helping my son through this medical issue.
Encopresis—A word I only heard two weeks ago has nearly halted every aspect of my family. If you are the parent of a child with autism having gastrointestinal issues, or curious how this can derail families like mine, I hope you find this post informational and helpful.
I’ll first explain what encopresis is and then share how it is impacting my son and what steps we are taking to support him through this.
What is Encopresis?
According to the Mayo Clinic, Encopresis (en-ko-PREE-sis), sometimes called fecal incontinence or soiling, is the repeated passing of stool (usually involuntarily) into clothing. It is a medical condition that for children on the spectrum also includes a behavioral component which makes it extra tricky to manage.
What Causes Encopresis?
The initial onset of encopresis involves the child becoming constipated. For children on the spectrum, this can occur for several different reasons such as withholding stool because they don’t want to stop a preferred activity, fear of the pain of defecating, poor diet due to severe restricted eating patterns, side-effects of medications, lack of interoceptive awareness (child can’t discern between the sensations of needing to poop versus hunger pains versus a stomach ache) and the list goes on. Many autistic children are impacted by several of these causes and some by all of these.
What are the Signs of Encopresis?
- Reduction in the number of bowel movements. For example, a child goes from two per day to two per week.
- Painful bowel movements.
- Streaking in underwear.
- Accidents in underwear.
What are the Stages of Encopresis?
Encopresis doesn’t develop overnight. I’ll list in simplistic terms a common way a child can develop encopresis.
- Child becomes constipated.
- Hard poop backs up in the colon stretching and loosening it.
- When new soft poop piles behind hard poop, liquid from soft poop can leak past hard poop causing streaking.
- Over time, the anal sphincter muscles weaken to the point that the child has almost no control over poop coming out therefore having consistent accidents.
Here is an excellent video done by the Children’s Hospital in Colorado that explains encopresis in terms a child can understand. But also a great resource for adults as well.
My Son’s Struggle With Encopresis
As I mentioned before, several factors can contribute to the initial constipation that leads to encopresis, and my nine-year-old son is impacted by all of them. Over the last few months, I’d noticed him withholding by standing and crossing his legs. He didn’t want to sit on the potty. We gave him a little Miralax, he went, and I thought all was well. All was not well.
Then the streaking started. I thought he just wasn’t wiping well. But every time I checked, even if he’d not had a bowel movement, he had streaking. I took him to his pediatrician who diagnosed him with encopresis and said to give him Miralax twice a day for the next several weeks.
Four days into twice a day Miralax, I had to keep him home from his summer program due to all day accidents. I dropped the Miralax down to once a day, the accidents continued. I stopped the Miralax, the accidents continued. And this was now beyond streaking but full messes in his underwear.
I took him back to the pediatrician and he’s now got an upcoming appointment with a pediatric gastroenterologist, but not for three weeks. The pediatrician also said to put him in pull-ups because at this point we suspect is the hard poop is gone and his sphincter muscles are so loose he can’t control his bowel movements. They also come out wet and sticky which makes it difficult for him to clean himself.
I’ve had to pull him from the social program he loves. And he won’t be going to school this week which started today. So instead, homeschooling started today. And with four to six accidents per day, the disruptions impact every aspect of what we are doing.
His ABA therapists have created a Task Analysis for him on how to handle the soiling from start to finish. It’s 18 steps. We are implementing it in practice sessions four times per day and we still have lots of work to do before he can manage it independently. Until he can, no school or social programs—which breaks this mama’s heart. But school and his social program don’t have the staff to help with clean-ups. And I can’t be there. So this is where we are.
I’m hopeful with five full days of practice, that by Monday, he’ll have the task analysis down enough that he can start the amazing autism charter school he was lucky enough to get through in a lottery. If not, we likely lose that spot and I will continue homeschool for the year because public school isn’t an option at this point.
I’m sharing all of this for several reasons. 1) If you are the parent of a child with autism who is exhibiting early signs of constipation, PLEASE get help NOW! Don’t wait like I did until it’s to this degree of severity. 2) I work with many authors in the publishing industry who I ask for patience during this challenging time. My response time will be slower. I may need email nudges.
This is a condition that can either resolve on its own or with the help of additional medical procedures, so I will be back in full force at some point. But for now, I gotta do what autism mama’s gotta do. Be there for my son.
Autism doesn’t come with a manual. It comes with a parent who doesn’t give up.
Author Unknown
Additional Resources
A Parent’s Guide to Managing Constipation in Children With Autism
Big Abilities 
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