By Steve Hodges, M.D.
The other day I read with interest a New York Times article titled “Sabrina’s Parents Love Her. But the Meltdowns Are Too Much.”
The article’s subtitle aptly summarized the story: “Unpredictable violence, chaotic outbursts and countless trips to the emergency room. What happens when an autistic teenager becomes unmanageable at home?”
I can’t begin to understand the challenges Sabrina and her family face, nor those of the other families included in the article. But one paragraph caught my eye, as it pertains to a topic I know a lot about: chronic constipation — either untreated or undertreated — in autistic children. As the article recounted:
“Back home Sabrina refused to change her clothes, which she had soiled. So they struggled some more. Her parents worried she would get another urinary tract infection: Some years, Sabrina had 10 or more, and they often ended in the emergency room, with Sabrina in restraints, screaming as a nurse injected her with sedatives or antipsychotics.”
I don’t know whether Sabrina has been treated for chronic constipation, but she clearly has this condition. Encopresis — chronic poop accidents — and chronic urinary tract infections are giant red flags. In fact, constipation is the only cause of encopresis and is always present in a child with repeated UTIs. (Read Why 1 Million Girls a Year Get UTIs.)
Yet in autistic children, these symptoms are often overlooked, dismissed as “part of the deal” with autism, so children miss out on effective treatment.
I discuss this topic in “Constipation Bedwetting and Autism: What the Medical Community Overlooks and How to Help Your Child,” an article for Autism Advocate Parenting Magazine.
In fact, I happened to receive my copy of the issue on the very day that I read the New York Times article and thought: This is exactly what I’m talking about.
In the Times article, the inference — whether accurate or not — is that Sabrina’s soiling and UTIs are somehow related to her autism. But chronic constipation is a separate issue that requires its own treatment.
There’s no question that autistic kids, like children with ADHD, have elevated rates of chronic constipation. It is unclear why, but here’s the thing: It doesn’t really matter. What matters is providing appropriate treatment for the child — same as with any child who has chronic constipation.
As I explain in my article for Autism Advocate Parenting Magazine and in an interview with Mary Barbera's Turn Autism Around podcast, countless children without autism are denied timely and effective treatment for encopresis and enuresis (bedwetting or daytime accidents) because many adults do not know that chronic constipation is the cause of accidents or because the child’s constipation is under-treated.
In my clinic, I routinely see tweens and teens with enuresis and/or encopresis who were told for years on end, “Don’t worry, you’ll outgrow it” or “Don’t worry, no one goes off to college with pull-ups.” Their constipation was missed entirely yet is obvious on a plain abdominal x-ray.
The difference with autistic kids is that their parents are accustomed to dealing with significant daily challenges and are reassured by physicians that accidents are common.
Children without autism tend to land in my office sooner because their parents get fed up. Missed sleepovers and sports camps, college looming, other social fallout — eventually parents stop believing the “Don’t worry, she’ll outgrow it” message.
But by the time autistic kids are referred to me, they are often far worse off than kids their age without autism. More years have passed, more poop has piled up, the rectum has been stretched further, and the accidents are more frequent and severe.
Given Sabrina’s many profound challenges, her UTIs and encopresis may not rate much attention from her physicians — or maybe they do and that wasn’t relayed in the article. At any rate, her chronic constipation should be treated aggressively, same as in any child. I hope that is what is happening.
I hope, too, that parents of other autistic children will recognize the signs of constipation, which are often subtle and not well known, and seek treatment for their kids, too.
In my Autism Advocate Parenting Magazine article, I discuss my preferred treatment for enuresis and encopresis: the Modified O’Regan Protocol, an enema-based regimen successfully used by many of my autistic patients, despite initial reluctance on the part of their parents.
Yes, indeed, autistic kids can be receptive to enemas! Here is an email I recently received from a mom whose son overcame enuresis with M.O.P.:
My youngest son is now 16. He has been free of enuresis and encopresis for years now thanks adherence to M.O.P. starting when he was about 5. He has autism, and when he started having accidents at around 4 years . . . his pediatrician told us airily, “It’s because he’s autistic.
We promptly found a new pediatrician. I did my own research and had the incredible good fortune to come across your work, get buy-in from our son (who met the whole experience with a maturity beyond his years) and convince my husband, who was reluctant at first, then a wholehearted convert.
I can say without exaggeration that our son might not have stopped having accidents without the absolute dedication to M.O.P. of his father and their determination, father and son both, to help each other succeed.
We were on M.O.P. for over a year. It is a quality of life issue, to live free of the fear of accidents and experience all the simple joys that one can never recapture once childhood is in the rear-view mirror.
Whatever treatment road families choose to go down, it is imperative that chronic constipation be recognized in autistic children and taken seriously.