What About the Adults?
August 20, 2007 by Kristina Chew, PhD
Filed under Health
The mother of Clay, who is 23 years old and has autism, cerebral palsy, and hydrocephalus and is legally blind in both eyes, asked this very question—–”what about the adults”—–in a comment on If There’s No Autism Epidemic, Where are all the Adults with Autism?. It is a questions that, I suspect, more parents of autistic persons who are children think about constantly; yesterday’s report about the 50 year old autistic woman who was beaten by workers in a group home is yet another news story that brings home so many fears and worries and that, perhaps, is somewhat behind some wishes for a “cure” for autism: How will a child like my son Charlie be able to have a good life—indeed, to survive—when he is older? when my husband Jim and I are no longer able to take care of him because we are in need of are ourselves, and when we are gone?
Or, to look into the more immediate, but equally uncertain and question mark-ridden future, what will happen in adolescence? Friends who have been staying with us at the beach house on our vacation asked me this and I offered what doctors and professionals other parents have told us about hormonal changes, the possibility of seizures, what to do about sexuality. And then all I could say was, “but I really don’t know.”
These same friends have been noting how very much more social Charlie is after a great year at school. After sleeping in and breakfast, Charlie leaned against our friend Hal, stretched out, and fell asleep until we woke him an hour later. He sat down grinning and laughing next to another friend this evening and was very silly when he ran up the stairs to bed and knocked things around in his room. Then, in a literal second, his jollity became crying anxiously: Both friends are leaving tomorrow and I think that reality hit Charlie as he settled down amid his blankets: Departures often come with such sudden, stricken cries from Charlie. I turned on a favorite CD—Fountains of Wayne—-and one song, “Nightlight”, and another, “Planes and Trains,” accompanied him to sleep.
It was about two years ago that we gently put aside the CDs from children’s TV shows, save for some true classics (the Count singing “Eensy Weensy Spider”) on Charlie’s iPod. One by one, Jim bought CDs of his favorite records (which are still in the basement)—-Jimi Hendrix, Desmond Dekker, the Ramones, Jimmy Cliff, the Byrds, Don Sugarcane Harris—-and played them for Charlie in the car. Maybe it was the rides or the sodas or the occasional bag or fries or just the love and enthusiasm of Jim for the music and the road and life with Charlie, but Charlie has gotten hooked on rock ‘n’ roll and I am thinking, here is something he can have for his whole life, here is something that will carry him into his whole life—-even as my mind races to wonder where he might live, what kind of work he will do (Charlie showed a lot of interest in Jim’s cousin cooking gumbo tonight; I can see Charlie working in a restaurant, though we’ll have to teach him the food is not for his eating), how will those who help him be trained and supervised, what about the great hereafter.
It was hard for me to contemplate the issues to be faced by an adult—by an adolescent—with autism when Charlie was a newly diagnosed toddler. I am not sure that I would have been able to respond well to any suggestions about how what to do and plan for an autistic adult when Charlie was young. But how can we best convey the future to parents of young autistic children, without unduly alarming them, while emphasizing how much a child can learn and grow and unexpectedly become?
What about the adults?
Heck, I’m “mostly normal” and soon to be sixty, and not having a very good life. I think my parents may have protected me more than was good for me, in some ways, and left me to fend for my self more than was good for me, in some ways.
I do think they believed they were doing right by me.
I hope what I wrote makes sense.
Kristina, This is why I worry more about education than anything else. This is the ONLY way we can plan for adulthood. Our kids will be adults a lot longer than they will be children, and ignoring the bigger picture because of being overwhelmed now doesn’t do them any good.
There are no services or funding for adults unless your child tests as MR. At least not in PA. The wait list for group homes in Lancaster County is 1700 people long, according to a friend of mine. His 40 yo son with Downs FINALLY got into one. Not all group homes are as bad as what you saw on TV, either. ALAW has the autism Pilot program and there are autisic people going to college living in group homes.
I don’t know if alarming the parents is necessarily a bad thing. That’s how pro-activity gets started. But a lot of people grieve for their kids for ages, or are too overwhelmed to see past potty training. I didn’t feel grief was an issue for me. What was to grieve for? I was more panicked that he would end up in a cardboard box if the services weren’t provided while he was young, or if they weren’t in place for when he is older. And the ONLY way to even begin to get around that is education.
OH – also – what to do about the adolescent issues…. the very minute you see anything of a sexual nature, get your BSC to work with him. If you don’t have a BSC, get one. There are some good easy videos, a couple of books (check with some of the groups for names – Yahoo has an Adolescents with Autism group) and a friend of mine is actually writing a book because we have all felt that the books aren’t quite appropriate – either too fast, too detailed, etc.
I am more in fear that Bug might say something to someone and be misconstrued, sued for harassment or worse….if NJ doesn’t have a program for educating the state police, I would suggest you try and start one. Another friend of mine has done that for PA, and you could probably use it as a template.
I will say that you would be surprised how they mentally mature along with the bodies, though. He might make a fine cook one day and even keep his hands out of the goodies!
There are programs in some towns and a bill that passed the state legislation to put in place training for “emergency service personnel.”
Yes, I do think Charlie can learn that it’s not to eat—I think he would enjoy working in a restaurant kitchen and he’s already learning some skills.
Perhaps some alarm is inevitable—
I am interested in knowing when the book discussed in another comment will be out and the title. Please let me know. my nonverbal son turns 12 at the end of June and we need something visual to help him know what he can do and some cues on what to expect of his body as he gets older.
My sister was born with a brain tumor, found out when she was about 8 and had operations and became blind. She has seizures and other issues and never really developed and looks young still.
She is about 40 and has worked for years with CEA in Flemington and still lives at home. I remember always seeing adults with disabilities on the buses and working at various orgs in NJ.
Here in Los Angeles I see many adults with assistants at the malls and walking around Mervyns and Target.
The first year that the Wrights were involved in autism they did that special for weeks on the NBC stations and that was made into a DVD. There were a few encouraging stories of adults working and they started in HS. This girl made pizza boxes for a pizzeria, another guy stocked soda, another one vacumed at Holiday Inn (I saw my son doing that type of task, with an aide watching).