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Joined: 7 Oct 2017
Age: 45
Gender: Male
Posts: 614
Location: Canada

20 Dec 2017, 6:00 am

ASPartOfMe wrote:
Autism studies hampered by lack of reliable test for gut problems
In his first description of autism in 1943, Leo Kanner described children with social problems, repetitive behaviors and language difficulties. But one more feature in his description would become a mainstay of autism: gastrointestinal distress.

Since his report was published, dozens of studies have documented gastrointestinal issues, such as constipation, diarrhea and abdominal pain, in people with autism.

By some estimates, more than 70 percent of people with autism have gastrointestinal issues. But other studies have pegged the prevalence as low as 9 percent. We suspect these discrepancies are in part due to the way gastrointestinal problems are measured.

Although there are good tools for assessing gastrointestinal problems in clinical practice, there are no reliable tools for use in epidemiologic studies. For these studies, we need questionnaires that a participant or caregiver can complete outside of a doctor’s office.

Not even the tools doctors use have been adapted for individuals with autism, who may have difficulty communicating. Some clinicians use parent reports to gauge gastrointestinal symptoms in children. But parents may not always know their child has abdominal cramps or discomfort, and may instead think that behavioral outbursts rooted in pain are just manifestations of autism.

Even if clinical or epidemiological tools can capture certain gastrointestinal symptoms in people with autism, not all of them include questions about diet, mealtime behaviors and other autism-related behaviors, such as aggression and self-injury. These behaviors may signal gut problems in a person who has difficulty communicating. In short, we just don’t know if these tools are measuring what we think they are in people with autism.

I followed your link and found the article to be quite interesting but I followed another link at the bottom of the page of that link you provided and found another article entitled, "Going Gluten Free Unlikely to Help Most People With Autism." The first line went on to say, "There is a misconception that gluten is exacerbating or causing the features of autism."


Perhaps my family doctor was onto something when he said that most ASDs lack a certain enzyme as a genetic characteristic and result of Autism to properly break down food, thus causing many GI disorders. But I found no mention of incontinence in any of the articles in those links. Perhaps I missed?

Other GI issues include incontinence as well, which has plagued my younger brother and I since the start. He's an Aspie too but more non-verbal and low-functioning and he was a bed-wetter right up until high school. Even during high school he had to wear adult diapers, but only at night. At 41 years old he is still plagued with urinary incontinence even while being married. His very forgiving wife knows (and I know) that he still needs to wear adult diapers to bed at night.

For myself, I was potty trained extremely early for a child @ 2 years old and I ended up paying for that later on in life as I am fully incontinent now. Doctors from every country have repeatedly warned that children who potty train too early can develop GI Disorders later on in life. Even without the genetic effects of Autism. Like I did.

A few years ago, I started having difficulties with getting to a bathroom on time, I suddenly needed mad-dashes to the bathroom, I developed pain when I held my water even for a small amount of time, I had started having many accidents en route, and I even lost void control too. So, my doctor prescribed adult diapers for all of those issues and now I'm completely incontinent but at least the pain and accidents and all of those aforementioned problems have been solved. I don't mind wearing diapers anymore, but it does require quick-thinking sometimes to avoid public detection and I need to keep a well-equipped diaper bag close by.

It's all good. I guess I've simply unintentionally accelerated myself to a senior citizen's level as far as bowel control goes. But it's interesting to note that many Autistics are incontinent, but more of the non-verbal type on the whole. I was apparently of the small percentage of Asperger's type ASD that's incontinent.

My therapist says that anxiety is also a major problem with strong links to incontinence and bowel control. My therapist lists my current anxiety status as "inconceivable". Essentially the highest it can be without totally losing control and being committed to a mental-health hospital. His highest classification would be an "uncontrollable" anxiety level and I wouldn't be living on own anymore...

Thank-you for that link ASPartOfMe, it was enlightening!


*** High Functioning Autism - Asperger's Syndrome ***


Keep calm and stim away. ;)


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Joined: 25 Aug 2013
Age: 63
Gender: Male
Posts: 24,647
Location: Long Island, New York

20 Dec 2017, 12:13 pm

xatrix26 wrote:

Thank-you for that link ASPartOfMe, it was enlightening!


You are welcome

Professionally Identified and joined WP August 26, 2013
DSM 5: Autism Spectrum Disorder, DSM IV: Aspergers Moderate Severity.

It is Autism Acceptance Month.