Autism studies hampered by lack of reliable test for gut problems
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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.
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Professionally Identified and joined WP August 26, 2013
DSM 5: Autism Spectrum Disorder, DSM IV: Aspergers Moderate Severity.
“My autism is not a superpower. It also isn’t some kind of god-forsaken, endless fountain of suffering inflicted on my family. It’s just part of who I am as a person”. - Sara Luterman