Every day I think about what will happen to my child after I am gone. This is a frequent comment in a San Jose Mercury News story about Elizabeth Hodgins, who shot her 22-year-old autistic son, George, and then killed herself on Tuesday in their home in Sunnyvale, California.
The story really hit me. As I’ve written before, my teenage son Charlie (pictured above) is autistic and on the more severe end of the spectrum. He will always need full-time care. My husband Jim and I have done our best to provide him with a good life and a good education so far but what about that part of Charlie’s life when we are no longer here to guide the way for the boy we call our best pal ever?
George Hodgins, says the San Jose Mercury News, had attended the Morgan Center, an autism school in San Jose, since he was 6 years old. Educational services end for autistic students when they are 21 and George had been in the adult program but had left it. Jennifer Sullivan, executive director of the center, said that “Elizabeth Hodgins told her that she wanted to find a program that was more community-oriented, where her son could be out in the world.” Hodgins had apparently been having trouble finding another program for George; on hearing this, the San Jose Mercury News says:
Sullivan became upset: “I wish we would have known. He could have come back here. We loved George.”
His mother adored him and the two were “very close,” she said.
I do not know much about the Morgan Center’s adult program. Charlie will be 15 in May and my new “hobby”/obsession has been to find a good adult program for him. Charlie loves his school in New Jersey where we live and he loves going to school. I know the day that yellow bus does not pull up in front of our house will be a tough one.
Autism is a neurodevelopmental disability. Charlie clearly has developmental delays: He rolled over late, walked late, talked very late. He did start early intervention when he was 2 years and some months old, a huge boon. He has been in special education classes since he was 4 years old and is now in a county school for autistic children where he learns skills of daily living and vocational skills. He also receives adapted physical education (he loves it) plus art and music classes (which he is not as fond of, but likes more and more), as well as speech therapy and occupational therapy: Charlie is still learning how to speak in long phrases, how to tell time, how to tell us that he has a stomache and doesn’t fell well.
Charlie may learn how to do these by the time he is 21, the legal age at which he will no longer be covered under the Individuals with Education Act (IDEA). As we were informed in a no-nonsense kind of way at Charlie’s IEP meeting last month, the month after he turns 21, no more “entitlements” to school services. No more school with the kindly, cheerful, loving teachers, therapists, administrators and bus drivers.
I suspect if Charlie had his way, he would simply stay where he was when he turns 21. Unlike students without disabilities, he is in no hurry to be independent, be “on his own.” Indeed, he is developmentally delayed: By definition, it just takes him a lot longer to learn and do things than most people his age. Of course we must teach him to be as independent as possible and every day we see that he is learning to do more. But 21 seems more and more like a completely arbitrary cut-off point for the world that we and many others have built for Charlie to end.
Charlotte Moore, author of a wonderful memoir of her two autistic sons, George and Sam, makes this very argument about the need to extend education for autistic students to the age of 21. Sam is 19 and Moore writes of looking back at his years in school as a “golden age.” His reaction to the loss of his “purpose-built special-needs environment” was what I suspect Charlie’s will be: Sam became “aggressive and destructive, as he always does in response to stress.” Moore has found herself “reinventing the wheel.” She knows what Sam needs based on his successful school experience but even with a “fairly hefty budget from social services,” there are not enough funds to provide for all the things — speech therapy, occupational therapy, music therapy — that helped him so much. Her older son, George, who is more verbal and has more academic abilities, has been doing well at a Mount Camphill Community, where he will live for three years; this program, though, does not provide the level of supervision George needs (or that Charlie will need).
Moore argues that autism education should extend till the age of 25 and I heartily agree:
The cut-off point for educational provision is modelled on neurotypical development. How much research has there been on patterns of autistic learning in adulthood? In talking to parents of older “children”, I’m struck by how many of them insist that the capacity for learning continues well beyond the teenage years – that startling progress can be made into the twenties, thirties and beyond. A legal right to educational support up to the age of 25, as advocated by Ambitious about Autism, would be a huge advance in autistic well being.
I know, asking for more years of educational services for autistic students in an era of slashed budgets and economic crisis seems like a counter-logical fantasy. But I think we need to take up Moore’s point and think about how to re-model autism education based not on “neuotypical development” but on that of autistic development. Of course it will not be easier to say good-bye to the yellow school bus when a child is 25, but why not give autistic individuals who have educational, social and other delays more time to learn all they can? More time is needed for the transition to adulthood and independence.
I am not saying that such a change might have made a difference for Elizabeth and George Hodgins. But I do know that families with older autistic child feel themselves staring at an abyss when they think of their child turning 21. We have learned so much more about autism and the different developments, abilities and needs of autistic individuals in this past decade: Let us try to use this knowledge to provide the best outcomes and the best lives for individuals with developmental disabilities at every age.
Related Care2 Coverage
Photo of the author's son at a grocery store