Managing Editor's Note: Yesterday, we ran Anne Dachel's take on the Washington Post article on the joy of autism and the mirage of neurodiversity, AofA reader Aimee Doyle wrote a pointed letter to the reporter and shared her letter in our comments. We thought it was an important point of view. If you would like to share your thoughts with Ms. Somashekar, you can reach her here.
Here's a copy of the email I sent to Ms. Somashekhar this morning. I'll post again if she gets back to me (unlikely). But I just couldn't let the article stand unchallenged.
__________________________ Dear Ms. Somashekhar: I have some comments on yesterday's article "In Autism, A sense of Comfort and Identity, Not Dread." I am the mother of a 25 year old man with profound autism, who will need lifelong care, so I speak with substantial experience of autism. I was disappointed in your article's narrow focus on the neurodiversity movement. Most individuals on the spectrum are not high functioning. Approximately a third of those on the spectrum are non-verbal; another third or so (my son falls into this category) are semi-verbal (some language, but not really able to write or hold a conversation). The remaining third have high functioning autism (some of whom can finish high school and hold a job with supports).
The percentage of individuals on the spectrum who have Asperger's syndrome and who can go to college, get a job, get married, have friends - participate in the neurodiversity movement! - is vanishingly small. Yet this is the population that you describe, and you imply that this "movement" includes all individuals with autism. Why does the media never cover the challenging aspects - both personal and societal - of moderate and severe autism?
I realize you interviewed and quoted Kim Stagliano, which was sort of a nod to balance, but was lost in the overall thrust of the article. However, you didn't discuss the tragedy of wandering - over 50% of individuals with autism wander, which has resulted in death by drowning or other causes.
You didn't discuss (and the neurodiversity movement likes to ignore) the behavioral challenges or the self-injurious behaviors of individuals with profound autism. For example, when my son was an adolescent, he was both violent and self-injurious - he hit his leg so many times he developed permanent bruises and all the hair fell off his leg. He went through a period where he would scream for hours from midnight to 3:00 a.m. I had bruises that would have qualified me for a domestic violence shelter. There were days when he would relieve his anxiety by slugging my husband. Among my friends,
I know a young man on the spectrum who ate one of those small, moveable magnetic sculptures, and had to have major surgery to have the magnets removed. Further, many individuals on the profound end of the spectrum have serious medical issues (such as severe gastrointestinal problems), that you - and the neurodiversity movement don't address. And of course, no one ever talks about fecal smearing.
And I haven't even gotten started on the costs of autism - over 20 years we have spent hundreds thousand dollars trying to help our son - and I know families who have spent much more. Despite progress, my son is still profoundly affected. The government has already paid hundreds of thousands of dollars for his education and therapies (years of speech and OT) at the Ivymount School under IDEA, and continues to pay through monthly federal SSI, and his Maryland DDA funded day habilitation program and his after-care CSLA. These expenses will continue for the rest of his life, and likely increase when he needs to move to a group home. Multiply this times hundreds of thousands of autistic adults (extrapolating from the 1 in 68 CDC statistic) and you have budgetary meltdown.
I love my son dearly. He likes to paint pictures and participate in Special Olympics. I celebrate all his accomplishments. He will continue to live with us for the foreseeable future. But my son will likely never hold a paid job, have friends, have a girlfriend, live independently.
At gatherings with higher- functioning individuals with autism, he is ignored - some self-advocacy groups don't even allow lower functioning individuals to join. I personally have never met anyone higher on the spectrum who is interested in spending any time with my son whatsoever. I asked a neurodiversity proponent one time what should happen to the individuals who are severely affected. She blithely replied "that's what group homes are for." I find that insulting and dismissive. So there it is - a view from the other side of autism. It's time to show something besides the shiny, happy picture.