Susan Senator

This came my way via a friend who is connected with the ARC of Illinois, who ran this in their newsletter. Thanks, Kim!

ELITE Magazine

A Sun-Times News Group publication
November, 2005
When Autism Hits Home

By Robert Hughes

The term “autism,” a new one for me, was in bold print, but this wasn’t enough to catch my eye. My eye was hard to catch at 1 a.m. that morning in 1970 as I read my college Introduction to Psychology text for the first time before the final exam. It was a struggle just to stay awake.

What did manage to penetrate my skull, though, was the spooky photograph next to the word: a boy sat in a corner staring at the floor with his fingers in his ears. It reminded me of an old horror film, “The Village of the Damned,” in which the kids were scary space aliens menacing the nice adults.

Cool, I remember thinking.

The child was autistic, the text explained. That meant he had no speech, no interest in people, and rigid body posture. Like all the “auto-” words, autism meant “by oneself,” so the boy hated to be touched and lived in a world of his own. Autism was extremely rare and had no known cause or cure.

Freaky.

And that was it. The most interesting condition described in the book was covered in a couple of paragraphs.

Autism, the reality of it, hit me in 1988 with the force of a tsunami. That was the year that my 3-year-old son Walker was diagnosed with autism, and ever since there has been no corner of my life not immersed in it.

Autism affects every single thing the four of us do – Walker, my wife Ellen, our other son Dave, and I – when we sleep (if we sleep), what we eat, where we go, how we play. Autism limits and often twists our family relationships, our friendships, our plans for the future, our ability to navigate the worlds of work and school.

This shift in my life from autism-as-distant-ripple to tidal wave parallels autism’s larger journey in the medical world. What used to be considered a very rare condition is now known, according to the Centers for Disease Control, to affect 1 in 166 births. What was once an obscure but memorably haunting syndrome now makes the covers of Newsweek and Time and front-page stories in newspapers. Today nearly everyone is connected to it, not by six, but by just one or two degrees of separation.

The Autism Society of America estimates as many as 1.5 million Americans today have autism in some form and this number is rising at a shocking rate. Based on numbers from the U.S. Department of Education and other agencies, autism is growing 10 to 17 percent a year and could afflict 4 million Americans in the next ten years. Autism is four times more prevalent in boys than in girls, though it is no not restricted to any ethnic group or class or area of the globe.

Despite this stunning near-epidemic, there is still no agreed-upon cause or cure. So autism is described in terms of symptoms, not cellular activity. In Walker’s case, autism takes the form of limited speech: he can’t converse, can’t reliably answer yes or no, and most mysteriously, never points. He’s always moving: walks on tiptoe, bounces on his huge exercise ball, jumps in place.

He’s physically handsome, but his actions – index fingers in ears, laughter for no clear reason, shouting of odd words and phrases – always give his condition away. He can’t safely leave the house alone, can’t introduce himself, can’t play a game or – except at odd, wonderful moments – make a comment.

But just as with the neurologically normal, no two people with autism are alike. In fact, autistic traits vary so enormously that autism is described as a “spectrum” of disorders, from low functioning, like Walker, to high functioning, like authors Donna Williams and Temple Grandin.

In fact, high-functioning autism is present in attenuated form in the personalities of countless “normal” people. (Time magazine once had a sidebar comparing autistic traits with some eccentricities of Bill Gates.) This form is known as Asperger’s Syndrome, and my own understanding of Walker’s trouble has grown enormously because of the work of Tony Attwood, a leading psychologist in the field.

But to parents of low-functioning kids, Asperger’s Syndrome is what writer Ellen Pinkham calls “autism lite.” As emotionally and socially devastating as it can be, many Asperger’s people can nevertheless take classes, get married, and hold down jobs. If our son could suddenly make a phone call and walk to the store alone – well, it would be time for trumpets on the rooftop, dancing in the streets, and the Walker Hughes segment on “Prime Time Live.”

Despite failures to find cures, understanding of autism and medical hopefulness about it have grown greatly since Walker was first diagnosed. One tack has been behavioral therapies. Some of the better known are Lovaas, Applied Behavioral Analysis, Floor Time, the Denver Model, and Pivotal Response Training. Though according to a report in the New York Times last year, none of these methods is a “cure,” all rightfully claim some degree of success because of the love, enthusiasm and intelligent, intense interaction all these methods share.

Many parents try large doses of vitamins such as B6 and magnesium or special diets. Others have paid for healing touch therapy or had their child swim with dolphins, or ride horses. Parents report these methods can sometimes help with certain behaviors but do not address the underlying disability.

The other tack, and to Ellen and me, the more promising one, is neurological. Much autism work has shifted from the psychiatrists to the neurologists and genetic researchers. Autism is now known as a neurological problem, not a behavioral one, and the ultimate cure will doubtless come from brain research.

Dr. Michael Chez, a leading pediatric neurologist in the field, emphasizes how dangerous it can be for parents to focus only on the behavioral approaches. “If the brain is sick,” Chez says, “or biochemically malfunctioning, or having epileptic activity at night, therapy would certainly go better if medical intervention was done first or at least simultaneously.” Chez stresses that a sleep EEG to detect seizures in the night is an important first step. Cure Autism Now and Autism Speaks! are foundations that raise money for research such as Chez’s and are excellent sources for parents looking for solid medical information.

The popular perception of autism has changed over the years. Once it was blamed on “refrigerator mothers,” women who withheld affection from their children. Gradually – especially due to our understanding of the brain – that slur was put to rest.

But another myth, popularized by the film “Rain Man” in 1988 (the year of my son’s diagnosis!) persists. Now it was autistics themselves who became the “refrigerator people.” In that film the Dustin Hoffman character is portrayed as robotic, humorless, unemotional, uninterested in others, but possessed of a redeemingly nifty gift for numbers. My son, whose autism is more severe than this character’s, is loose-limbed, purposely funny, ultra-emotional, crazy about people, but nifty gifts, sadly, elude him.

Recently, a new theory has arrived, one I think of as Rain Man Redux. A much-publicized book, The Essential Difference, by Cambridge University psychologist Simon Baron-Cohen, claims that the one trait linking all people across the autistic spectrum is lack of empathy. Autistics have no “theory of mind” and cannot understand, and do not care about, what others are thinking.

However well-meaning and in some respects accurate this theory is, its main theme contradicts the experience of many who work with these children. Walker’s teachers at his school will testify to the emphatic empathy the kids exhibit daily. “They’re right here engaged with us,” says one of his teachers, Lauren Mucha.
“They’re not off on some planet of their own.”

I worry that this spurious perception of children with autism as uninterested in others, as cold to friendship, as uncaring and unemotional will impede the help they so desperately need. Though autism is the most widely diagnosed developmental disability in the country, Autism Speaks! founder Bob Wright notes that it receives only $15 million per year from private sources, compared to the more than $500 million for other childhood conditions like muscular dystrophy, cystic fibrosis and juvenile diabetes.

But who wants to help or befriend unlikable people?

Right now as I sit here typing on my laptop, Walker is doing his impression of that autistic boy I saw in the photograph back in 1970. He’s sitting in the corner of our dining room with his fingers in his ears, hunched over and staring at the floor. A retro-minded medical photographer could, I suppose, take a snapshot of the two of us and place a cut line underneath: “Autistic young man in typical posture. Autistic people live in a world of their own and are unable to connect with those around them, even family members.”

But a video of the scene would reveal something sharply different. The young man’s position is just a momentary break for a near-perpetual motion human being. He’s not sitting on a chair, after all, but on an exercise ball on which he bounces happily and eternally. (He’s burst seven so far this year.) He’s not silent but playfully needles his dad every few minutes with demands – for food (“SPAGHETTI CHEESE!”); for videos (“‘LOVE ACTUALLY!'”); for topics of conversation that I’m supposed to write down in the notebook that lies forever on the table next to him (“AT MALL WE EAT FRIES. LISTEN TO ALAN JACKSON IN CAR.”)

When I try to put him off, he comes over to me laughing with the notebook in his hand. He brings his face inches from mine, eyeball to eyeball in a comic, fake-dramatic sideways angle that gets me every time.

It’s all there, really. Love and humor and intelligence and fun – he somehow manages to hoist them all over the neurological wall he faces every day. He reminds me every minute that he’s a fellow working hard with what he’s got to reach the people in his life. He reminds everyone he comes in contact with that he’s a real live person in the room, somebody to get to know.

And he reminds all of us, with a force that takes the breath away: He’s a guy worth helping.

Robert Hughes is the author of Running With Walker, a Memoir.
More information is available at www.runningwithwalker.net

Note, especially, what he says about this “real, live person” who “takes his breath away.” Just beautiful. Just a dad. But an extraordinary one.