When Autistic Children Become Adults

[Guest guest]

September 15, 2010, 2:37 pm

When Autistic Children Become Adults

By LISA BELKIN

Today, one in 110 children is estimated to have some form of autism spectrum

disorder. But back in 1943 there were a total of 12. That was when the first

article about a condition “unlike anything reported so far” appeared in a

medical journal. A boy named T. was called “Case 1” — the first child

given a diagnosis of autism.

In the October issue of The Atlantic, the reporters Donovan and Caren

Zucker tracked T. down and wrote about his life. “His full name is

Gray Triplett,” they write. “He’s 77 years old. And he’s still in Forest, Miss.

Playing golf.”

In part, the Atlantic article is a tale of a little boy’s life — of how he was

institutionalized at for a year at the age of 3, when doctors blamed his parents

for overstimulating him, and of the 33-page letter his father, Oliver Triplett,

wrote to the leading child psychiatrist of the day, detailing ’s symptoms,

quirks and differences that will be familiar to the parents of any child with

autism:

Their little boy, Oliver wrote, had almost never cried to be with his

mother. He appeared to have withdrawn “into his shell,” to “live within

himself,” to be “perfectly oblivious to everything about him.” Entirely

uninterested in human beings—including his parents, for whom he displayed “no

apparent affection” — he nevertheless had several obsessions, including “a mania

for spinning blocks and pans and other round objects.” He was fascinated with

numbers, musical notes, pictures of U.S. presidents and the letters of the

alphabet, which he enjoyed reciting in reverse order.

Physically awkward, he also had intense dislikes: milk, swings, tricycles —

“almost a horror of them” — and any change in routine or interruption of his

internal thought processes: “When interfered with he has temper tantrums, during

which he is destructive.” Generally nonresponsive when his name was called — he

seemed not to have heard — he instead had “to be picked up and carried or led

wherever he ought to go.” When asked a question, if he answered at all, he

generally kept his response to one word, and then only if it derived from

something he had memorized. Certain words and phrases captivated him, and he

would loop them aloud endlessly: trumpet vine, business, chrysanthemum.

Mostly, though, the article is a look at what comes next for children like

. What to do for the wave of children with autism when they grow into

adults? There are an estimated 88,000 such adults today, and their parents all

face the anxiety that hundreds of thousands more parents will confront in coming

years. As Donovan and Zucker write:

The question that haunts every parent of a child with autism is, What will

happen when I die? This reflects a chronological inevitability: children with

autism will grow up to become adults with autism, in most cases ultimately

outliving the parents who provided their primary support.

Then what?

It’s a question that has yet to grab society’s attention, as the discussion

of autism to date has skewed, understandably, toward its impact on childhood.

But the stark fact is that an epidemic among children today means an epidemic

among adults tomorrow. The statistics are dramatic: within a decade or so, more

than 500,000 children diagnosed with autism will enter adulthood. Some of them

will have the less severe variants — Asperger’s syndrome or H.F.A., which stands

for “high-functioning autism” — and may be able to live more independent and

fulfilling lives. But even that subgroup will require some support, and the

needs of those with lower-functioning varieties of autism will be profound and

constant.

How we respond to those needs will be shaped in great measure by how we

choose to view adults with autism. We can dissociate from them, regarding them

as tragically broken persons and hope we are humane enough to shoulder the

burden of meeting their basic needs. This is the view that sees the disabled in

general as wards of the community, morally and perhaps legally, and that, in the

relatively recent past, often “solved” the “problem” of these disabled adults by

warehousing them for life — literally in wards.

Alternatively, we can dispense with the layers of sorrow, and interpret

autism as but one more wrinkle in the fabric of humanity. Practically speaking,

this does not mean pretending that adults with autism do not need help. But it

does mean replacing pity toward them with ambition for them. The key to this

view is a recognition that “they” are part of “us,” so that those who don’t have

autism are actively rooting for those who do.

You can read the entire story here.

http://www.theatlantic.com/magazine/archive/2010/10/autism-8217-s-first-child/82\

27/3/ Then, those of you who are struggling with this question in your own life,

please use the comments to discuss your plans and fears for your children — and

let us know how the rest of us can “actively root” for them as they navigate the

future.