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.