Saturday, November 9, 2013

“It’s Just the Autism”

This quote by autism doc, Dan Rossignol, epitomizes the unconcerned attitude much of the American medical establishment has regarding a disorder that has reached epidemic proportions.  There are no definitive answers as to what causes autism, yet there is little scientific curiosity in the medical community about a disorder that now affects 1 in 50 American children.

Autism is based solely on behaviors, and you'll often hear it referred to as a "mysterious disorder". Perhaps that's because there has been scant research to explain the underlying cause for these behaviors--and even fewer physicians who bother to read the studies that might help them unravel the so-called mystery behind their autistic patients. Odd posturing, hand-flapping, stimming, tantruming--it's just the autism, that's all. This dismissive attitude results in our children not receiving proper medical care because the medical community writes off their very real suffering as "just the autism".

A simple tantrum or something more?

And despite all the medical comorbidities--epilepsy, severe gastrointestinal distress, autoimmune disorders, mitochondrial dysfunction, severe allergies, etc--there is a tendency to dismiss any relationship between these conditions and autism.  The pain and suffering of autistic individuals as manifested by unusual and disruptive behaviors is explained away by a, "It's just the way they are", as if people with autism are in some sort of subhuman category. As research dollars are being frittered away grasping at every straw to prove autism is a genetic vice epigenetic disorder, there is simply not enough being done to investigate autism's underlying medical conditions.

I remember taking Ryan to a pediatric gastroenterologist at Kennedy Krieger when was a toddler and newly diagnosed.  I told him Ryan had frequent diarrhea that burned his bottom, was an odd color and smelled atrocious.  His professional medical opinion was, "poop stinks", and with a shrug of his shoulders told me, "A lot of autistic kids have this problem".  And this guy was ahead of the power curve because he was at least aware there is a relationship between autism and gut disorders, but still had no treatments to offer or suggestions to help him. 

When I've had to seek medical attention the response has been quite different.  I've had MRIs, been sent to specialists, had every sort of test when I've had medical complaints.  What would the course of assessment be for an autistic person--for a non-verbal individual who could not describe his symptoms and might be rocking or being aggressive in response to pain?  Would these behaviors be brushed off as a normal part of the autistic condition, or explained away as the manifestation of mental illness?

Face it Autism--the American medical establishment is just "not that into you"
I've been thinking about this a lot lately.  What Ryan must no doubt endure on a daily basis, yet has no ability to complain about--no way to tell us he's hurting, except to cry and tantrum.  I wonder what he thinks--doe he blame us when we're not able to figure out what is bothering him and are therefore not able to make it better?  Does he think we are indifferent to his pain and suffering?

I also worry about what could happen if he should need medical care.  When autistic children act out, with tantrums or self-injurious behaviors, the first response of the medical establishment is to consider it a form of medical illness and prescribe powerful psychotropic drugs, rather than test for and treat the underlying illness. 

One pill makes you taller...and one pill makes you small--Jefferson Airplane

There will be a huge wave of autistic adults flooding our medical system.  What about a young, non-verbal adult with kidney stones who cannot communicate his pain?  What if he is flailing and aggressive, unable to get relief?  Will he be shackled and drugged into a stupor while his medical condition becomes more serious, or possibly fatal?  Although this may sound like hyperbole on my part, the recent case of Alex Spourdalakis suggests that this is no exaggeration.

I worry a lot about Ryan--for many different reasons.  This lack of curiosity about autism, coupled with concern and compassion for those are autistic by the medical establishment at a minimum compromises the ability of our children to receive proper medical care.  The disparity in how we treat so-called "normal people" and those unable to articulate their suffering is inhumane and a cruel indictment of modern medicine.
(c) Michael Jackson


  1. Not to play down AMA's response to Autism, yet, I suggest doctors are educated by an archaic system to treat everyone as peasants.

    After working for several major hospitals, installing computers, I learned I, as a patient, must command the system, not the reverse. I finally convinced my latest MD that I was an educated 67 year old with more knowledge about my body than he.

    I am Asperger, my daughter is also. One of her children is Asperger and one is Autistic and her battles with doctors, teachers and "normal" people is on-going.

    We feel your pain.

  2. You are so right, but the medical establishment fights back. If you don't agree with them, you're either crazy, uninformed, or abusing your child...or all three. Medical doctors learn next to nothing in medical school about autism--I actually have a peer-reviewed study about this--and yet they act as if they are experts on a condition we parents live with 24-7-365.

    Thanks for reading!