By Jamie Pacton
We may be the 99%, but my son isn’t.
As a severely autistic 4-year old who doesn’t talk, can’t sit still, hurts himself and others, and must be trained to do everything from hugging properly to playing with toys, he lost the numbers game. He’s the other 1%—or 1.36363% to be exact—but he is not alone.
The CDC reports that 1 in 88 kids have autism. That number’s up from the slightly less scary 1 in 110 kids that was reported just a few years ago.
1 in 88 is a whole lot of kids and people are talking about why this number is rising—diagnostic changes, vaccines, toxins in the environment—but I want to talk about something else—awareness in the medical community.
I know everyone’s down on docs because of the speciously debunked connection between vaccines and autism, and I’ll leave that issue in the ground for now. What worries me more is the fact that my son is stuck in a health care ghetto between ignorance from his pediatrician, ambivalence from pediatric specialists, and incompetence from his holistic doctor. Luckily, we live in a good state for autism services and behavioral therapy is covered by our insurance. What worries me, however, is that the medical side of my son’s autism is mostly ignored by medical specialists. His medical interventions are mostly left up to me, an English teacher, who once wanted to be a biologist, but who sucked at Chemistry.
Consider some of the recent interactions my son and I have had with his doctors:
Pre-diagnosis, when he was losing words and showing early warning signs, my concerns were dismissed by a pediatrician as needless. “He’s a late talker,” she assured me. “We’ll check him again when he’s 3.”
Post-diagnosis, we arrive at a different pediatrician’s office for his 3-year-old check-up. The doctor is busy with other patients, so he shoves a Resident in to the exam room and orders us to “fill the new guy in about autism.” We stumble through our “here’s-the-way-Liam’s-autism-presents” speech, while the Resident half-listens and tells us that “he’s not really studied autism at all in school.”
After 3 + years of agonizing GI pain and loose stools, I finally convince my pediatrician to refer Liam for a pediatric GI consult at the local, award-winning Children’s Hospital. When the GI doctor arrives, he starts out the exam by asking me “why do you suspect your son has autism?” I reply that this was not a suspicion, but a diagnosis and that there were clear biological gut issues that literally kept him up at night. The doctor dismissed this as “toddler tummy”, a condition that “lots of kids have,” and sent me home with some photocopies about avoiding fruit.
Frustrated with the medical establishment, I finally cough up the $600 bucks to see a holistic doctor in our area. He asks me a handful of questions, skims the 20-page history I’ve painstakingly filled out, gives me a magazine about autism, looks inside my son’s ears, and then reminds me that we’ll have to pay for all the tests and the he prefers his fee in cash or by check.
Is it any wonder that my distrust of the medical community has been growing? I have a clearly sick child, and no one is able, willing, or trying to help him from a medical standpoint!
That’s not to say that all hope is lost—I have changed his diet through my own reading and talking with other autism parents— and that has produced tangible improvements in his health and behavior, but he still has a long way to go. He is still a very sick little boy with a body full of medical anomalies that need study, funding, and consideration.
How much higher do the numbers have to creep before pediatricians, pediatric specialists, and other medical professionals get the memo that this is about more than changed diagnostic criteria? 3%? 5%? 10%? 25%?
April was Autism Awareness month and it’s time to pay attention. It’s time for the awareness to be spread outside of the autism community—where, believe me, those of us who love some with autism are very, very aware— and beg, plead, and demand that autism be treated for what it is: a serious medical condition with clear behavioral connections. It’s time for the medical community to come together, find solutions, and start caring for and healing the other 1% of the nation’s children. That's not too much to ask of the 99%, now is it?
Jamie Pacton is a mom, writer, and professor who lives in Milwaukee with her husband and two small sons. Her work has appeared in The Autism and Asperger's Digest, Hyperlexia, Hopeful Parents.org, Now and Then, Parents (forthcoming), and other publications. She grew up in East Tennessee, but moved north to study literature at Marquette. Currently, she teaches writing for several online universities, so she can be both a stay-at-home and work-from-home mom.