Growing Old with Autism

By Karl Taro Greenfeld

Noah, my younger brother, does not talk. Nor can he dress himself, prepare a meal for himself or wipe himself. He is a 42-year-old man, balding, gaunt, angry and, literally, crazy. And having spent 15 years at the Fairview Developmental Center in Costa Mesa, Calif., a state facility, Noah has picked up the con’s trick of lashing out before anyone could take a shot at him.

Noah’s autism has been marked by “three identified high priority maladaptive behaviors that interfere with his adaptive programming. These include banging his head against solid surfaces, pinching himself and grabbing others,” according to his 2004 California Department of Developmental Services individual program plan (IPP). Remarkably, that clinical language actually portrays Noah more favorably than the impression one would get from a face-to-face meeting. (See six tips for traveling with an autistic child.)

Despite the successful marketing of the affliction by activists and interest groups, autism is not a childhood condition. It is nondegenerative and nonterminal: the boys and girls grow up. For all the interventions and therapies and the restrictive diets and innovative treatments, the majority of very low-functioning autistics like Noah will require intensive support throughout their lives. If recent estimates of prevalence by the Centers for Disease Control and Prevention are accurate, then 1 in 150 of today’s children is autistic. That means we are in for a vast number of adult autistics — most better adjusted than Noah, some as bad off — who will be a burden to parents, siblings and, eventually, society.

We are largely unprepared to deal with this crisis. Autism funding and research, so far, have predominantly focused on children. When I have visited autism conferences, there have been exceedingly few research projects devoted to low-functioning adult autistics. It remains difficult for families of adult autistics to find the programs they need, to access those services that are available and even to locate medical professionals and dentists who can handle adult autistics. Too much of the burden rests on the families themselves, who remain in the picture as caregivers, advocates and, too often, the only party with the autistic adult’s best interests in mind.

Parents, of course, love their children. When I used to accompany my parents to visit Noah at Fairview, we would sometimes see other parents visiting their middle-aged “boys” — some of them strapped into helmets because of their self-injurious behavior — who walked with the same stiff-legged gait, bobbed their heads from side to side, twiddled rubber bands or twigs in their hands and sometimes smacked their foreheads with their fists. They were unlovely men, I thought, lost, impossible to like. But once the parents were gone, who was supposed to keep making these visits and these phone calls checking up on their sons and attending these meetings with the administrators and bureaucrats and caregivers to advocate on behalf of the lost men? That will end up being me, or people like me, the siblings. We will be the ones left caring.