There was an interesting essay published recently in the New Yorker magazine which reads almost as a history of autism. The author details the somewhat turbulent and painful past of the diagnosis and treatment of autism.
As the “mom of,” I found myself alternating between jeers and cheers as I was reminded how far the autism community has come in the past six decades.
- JEERS! All of the hurtful and harmful conclusions that were drawn in the early days of Autism. Take for example Bettelheim’s research done at the University of Chicago (ouch, my hometown) which attributed children’s autism to their distant and unaffectionate mothers. The “Refrigerator Mother” theory was commonly accepted in the early 1960s. Those who know me can only imagine the harm I would inflict on any psychiatrist who told me that I caused my son’s autism by not loving him enough as a baby. How could people have believed that? Well, the saving grace for most flawed research is better research that disproves such bunk. Remember Wakefield and the vaccines? I’m jeering again, loudly.
- CHEERS! Let’s applaud the heroes of autism like Ruth Sullivan, Areva Martin, and the Wrights. They were/are parent and grandparent advocates who have fought through the confusion, mis-information and bad science to gain educational placement, better treatments and ultimately more acceptance for those with Autism. The road ahead for newly diagnosed children won’t be an easy one but it will be far smoother thanks to those that have gone before.
- UNDECIDED: The New Yorker essay features a new book titled, “In a Different Key: The Story of Autism” by Donovan and Zucker. It’s been on my reading list for about a month — I’ll report back when I’m through it.
Before I close I want to challenge the author on the last few paragraphs of the essay. He finishes his piece with a brief discussion about whether autism is a “medical phenomenon at all” — whether it is “…a disease, a disability, or another mode of normalcy?” I believe he’s simply trying to underline the continual controversy over the diagnosis and treatment of autism.
However, from my perspective his final comment is infuriating:
“These matters belong to our moral life, and we can’t reasonably expect them to be settled by medical science, clinical evidence or even the law.”
Does he expect me to climb back into my refrigerator with my unvaccinated child? Can you hear my jeers? They’re deafening.
What do you think? Read the full article here.
by Maryanne Nugent, Autism Community Consultant for AHSS & Mother of a son with autism