Adulthood Is Just Around the Corner
December 22, 2008 by Kristina Chew, PhD
Filed under Health
Soon as December started, my students started asking me what we were getting Charlie for Christmas. I fumbled with an answer—what do you get for the child who doesn’t ask for anything?—and they seemed quite incredulous that he’d no desire for any electronic devices or a football jersey with X player’s last name emblazoned on it. I’ve been used to telling people that things are different with Charlie but, on further reflection, the thought occurred to me:
Charlie, at 11 1/2, is getting closer and closer in age to my college-students. Certainly there’s more than a few similarities between him and the tall guys with really big sneakers or Timberlands with legs too long to fit in the desks and always fishing around in a beyond dog-eared notebook for the homework they forget they had to do. But it’s been a new thing to conceive of, that, before I know it, Charlie will be nearing the age of a college freshmen—a young adult—an adult.
Well of course—-like anybody, Charlie is going to be an adult for most of his life. With his limited expressive language (two and three word sentences) and his struggles with his academics (finally finally he is writing both his first and last names), I guess some would say that Charlie “seems” or “is” a lot younger than his age; that, “mentally” he’s at preschool level or some such. I guess this might seem to be the case to some when they first see Charlie, taller than all of his cousins on Jim’s side (and that includes the cousin in his 5th or so year of college), and when some hear Charlie humming more than saying words, and when they see Jim and me hold Charlie’s hand as we cross an icy parking lot. But time and again I know, never presume too little competence, to little understanding.
Often there seems to be a sense of division—of interests, of needs, of priorities—between parents of young autistic children and autistic adults. Parents of younger children tend, understandably, to focus on early intervention and educational services, and ways to obtain and pay for such services. Talk about “autism rights” might strike some as absurd and beside the point in trying to teach a child to say his own name. But—while my son clearly has a lot of challenges and is most likely always going to need a lot of support to work and live—I find that, more and more, discussions about autistic adults’ needs and autism rights speak to him and his situation.
My son is tall and strong. I don’t believe that restraints or any physical procedures, and certainly not any aversives, are how to help him, at school and elsewhere. He’s in a school district that understands this but that’s not everyone and my son needs always to be treated with respect and in ways that acknowledge his sense of self, his dignity. Too often, this gets forgotten. Charlie has his reasons for organizing his stuff in the living room in a certain way and we don’t see this as odd or aberration, but as Charlie making sense of the world around him, in his own way, in a way that we’ve come to appreciate and then some.
I mean, I like to order the stuff on my desk and in my bag in a certain way; last thing I want to be doing is scrambling for the car key when I’m flying off to meet Charlie’s school bus.
The question that keeps playing in my head, truly, is: When Charlie is the same age as my college freshmen, will he be as tall as the tallest guys and with those seriously big feet?
“Often there seems to be a sense of division—of interests, of needs, of priorities—between parents of young autistic children and autistic adults. Parents of younger children tend, understandably, to focus on early intervention and educational services, and ways to obtain and pay for such services. Talk about “autism rights” might strike some as absurd and beside the point in trying to teach a child to say his own name. But—while my son clearly has a lot of challenges and is most likely always going to need a lot of support to work and live—I find that, more and more, discussions about autistic adults’ needs and autism rights speak to him and his situation.”
Yup. This is why we “evil neurodiverse” tell parents that they really should be listening to, and engaging, and thinking about the issues faced by, autistic adults.
Their kids are going to be the next decades’ adults. The sooner they realize the importance of joining us on issues like housing and household management, postsecondary and vocational education, employment, and living in the community as consumer and citizen, the better for their kids as they grow into adulthood.
Each of those issue areas will unfold differently for different autistic kids-growing-into-adulthood, but I maintain that none of those areas are *completely* irrelevant to the vast majority of autistic kids-grown-into-adults.
The options available to autistic soon-to-be-adults in *all* regions of the spectrum, in *all* of these areas, need improvement. Pick the parts of that picture relevant to your own children, and then *join us* in the fight to improve that picture.
Maybe this is part of why even though my G is only 6 I’ve already been looking out to his adult future, and thus find myself sharing a lot of those same “evil neurodiverse” views. Because I’ve already got his 14-year-old half-brother (who’s less than a sneaker heel thickness short of my height) that, while not on the spectrum, has an LD that’s going to influence the amount of adult independence he’ll attain. The pending adulthood of my children has been up in my face, literally, for some time.
P.S. Take heart, Kistina. My son’s relative maturing in the last couple years, though his academic skills are still at a glacial crawl, has made the idea of his life as an adult seem a little less far-fetched. There is some comfort in that. Yeah he’s still very much a “child” at heart, as parents we are likely to always see our kids as such anyway.
But I’ve found more and more that “academic age” taking a backseat in the definition of who he is becoming, and thus who he can be.
Kristina,
I know all too well of what you speak. With about 6 months to go until the big 1-8 birthday and a year and a half of high school left, these questions loom large. At this point it doesn’t matter what – if anything – “caused” the autism, it is simply a part of life that must be considered as we all get on with that life.
Thanks for a great, as always, post, and Merry Christmas to you, Jim, and Charlie.
@Tyler,
When Charlie was younger so much of the focus seemed to be on him learning to read—-still working at it, and yet we’ve grown quite comfortable (maybe that’s not the best word) with Charlie not being a reader (Jim and I both huge readers with books and things are all over the place all the time). I have this idea that Charlie may well be able to read and will just show that one of these days, or maybe not—-and it’ll be all right either and every way. thank you—-
@Phil, I’ve been thinking more and more, the truth will out and the evils of the “evil NDs” will seem…….significantly other than evil!
@Brett,
18? That is a big one——warmest wishes to you and yours in the holidays!
Do you think the Risperdal has anything to do with the rate of his growth? I wonder if Matt would be larger if we had kept him on it instead of changing to Geodon, where there is no side effect of weight gain.
The upside is that he is not too large to handle since he does jump me from behind when in stores, etc.
Nick is catching up to me quickly. I need to learn more about the ITP that is at age 14 in LAUSD although fed law says age 16.
I got a letter from school today saying Matt may not culminate at end of 8th grade due to unsatisfactory grade for work habits in Horticulture, that is his gen ed class and no mention of modified curriculum, so I will be going to school in Jan to straighten out, although I do want him to be in school thru the legal age he can be, not sure if that is based on state or not, but either 21 or 22? Not sure how they go about it, so maybe staying in middle school an extra year would work out, but dont like the way the letter is done.