By Dan Olmsted
It's often said that the worst fear of parents with an autistic child is this: What will happen after we're gone? This week brings the reminder that there is an even worse fear: What happens if my child dies before I do?
The death of Avonte Oquendo, whose remains were identified this week, brings that fear into high relief. The only good is its reminder, if one were needed, that "being autistic" is not the same as being "differently abled," and that the autism community cannot simply fend for itself. I remember sitting next to Bernard Rimland as he told the mother of a high-functioning young man -- a mother who felt her son was humiliated by the depiction of autism as a disability -- that if her son was content and capable, more power to him. That was not the kind of autism Bernie was talking about.
Nor was he talking about the kind of "autism" on display among certain high-functioning self-advocates and celebrities whose "coming out" only serves to diminish the seriousnesss of the real autism epidemic. (I'm reminded of Tracey Ullman's skit in which she played a minor, over-the-hill starlet who tried to stage a career comeback with a book titled something like, "My Lifelong Battle With Drugs, Alcohol, and Depression." When all else fails, talk about your heroic personal struggle.)
It's also often said that autism does not shorten one's lifespan, but I'm beginning to wonder. As more and more kids with the severe, immune-compromised, physically ill kind of autism age out into adulthood -- "after the bus stops coming" -- the prospects look bleaker, not better, for so many. The denial of the epidemic has allowed planning for the tsunami of young adults headed our way to fall into abeyance. Puberty seems to hit many children not only with new and sometimes disturbing behaviors, but with seizures and other new and frightening problems.
One biomed pediatrician told me that she feared some kids are like AIDS patients -- they have an acquired syndrome that can be progressive and end in multiple medical problems and, in some cases, death. One of the 11 original "Kanner kids" born in the 1930s died at 29, presumably of a seizure; he had suffered from them on a daily basis for years.
And another almost died in his early teens. The first autism case, Donald Triplett, now 80 and living in his original home in Forest, Miss., staged a remarkable improvement when treated with gold salts for a life-threatening case of juvenile rheumatoid arthritis. Who among us thinks that the disorder that threatened his life was unrelated to the cause of his autism?
So that's 2 out of 11 with not just autism, but something fatal or potentially so.
Better is a relative term. We also ran a piece this week by Wendy Frye, whose son James is a talented artist and much, much better overall after, his mother says, $90,000 in debt accrued to treat him (with one trip to Disney thrown in before the credit cards maxed out).
"We are 'winning'-ish," Wendy wrote. "But is winning symbolic as a 'recovery'? No, winning for us is a continued road to 'betterment'....at whatever level. And yes, we are better...for that we are thankful."
But the toll on families just seems to mount. On Facebook recently, this was posted. "Autism is devastation. We had to put the house on the market tonight."
Dan Olmsted is Editor of Age of Autism.