Reading at Truman College

Upcoming Reading – All Welcome!

2 pm, Tuesday, Sept. 27
Truman College Library
1145 W. Wilson Ave., Chicago

Truman Distinguished Professor Robert Hughes will discuss his new book, Walker Finds A Way – Running into the Adult World with Autism – providing an up close and personal look at autism in real life. Reading, book signing, Q & A.

Autism Chic

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Northwestern University Magazine, Fall 2016

Television idolizes characters on the spectrum, but such portrayals leave many behind.

by Robert Hughes

He’s obnoxious but handsome, rude but brilliant, socially inappropriate and embarrassing and infuriating but always the smartest person in the room. His colleagues might not like him, but they know he has a heart of gold and make excuses for him. The boss would love to fire him but realizes he’s much too valuable to let go.

He — and sometimes she — is that staple of scripted television, the protagonist on the spectrum. From House to The Mentalist to Monk to Bones to Star Trek and, of course, every incarnation of Sherlock Holmes, television has produced heroes who embody several, sometimes many, traits on the autistic spectrum. One character, Sheldon Cooper of The Big Bang Theory, is like a walking textbook of Asperger’s syndrome traits.

When I first started writing about my son’s autism in 1997, I wondered whether or not I needed to define terms like “autism” and “OCD” for the reader. Were they part of the common reader vocabulary? Wasn’t autism rare? When my son was diagnosed, a psychologist friend estimated that there couldn’t be more than a handful of autistic children in the Chicago area. But when I started writing, I quickly learned otherwise; so many families were, like mine, grappling with a staggering rise in the incidence of autism. The rate was said to be one in 10,000 in the 1980s, when Walker was young, but had risen to one in 500 by the late 1990s. It is now estimated to be one in 68 births, according to the Centers for Disease Control and Prevention.

However much experts parse these numbers, the word autism itself is now part of our common vocabulary.

The rise of the protagonist on the spectrum has kept pace with this growth in awareness. Sherlock Holmes is the quintessential example. For most of the time after his creation by Sir Arthur Conan Doyle in 1887, he was an eccentric superhero. His personal psychology wasn’t parsed as it is today: What is his sexuality? Is he autistic? Is he emotionally damaged?

He was simply superior. He was cool.

Today Holmes’ character has an autism-like component that only adds to his mystique: He and the other pop heroes with a similar profile share stunning mentalities along with endearingly obsessive qualities. Medical research and, more significantly, conventional wisdom now recognize that people with autism might be intelligent or even extraordinarily so. I’ve more than once heard acquaintances say casually, “Oh, yes, he’s so smart he’s almost autistic.” In the world of television and movies, there is definitely a kind of “autism chic” — personal trouble with socialization that only adds to the glamour of the character.

Autism chic is, in one way, a very good thing. It entertainingly teaches the viewer empathy: Friends and colleagues of the hero see through the wall of eccentricity the character puts up because they sense the beating heart behind. They are forgiving and tolerant despite the hero’s regular rudeness. They know he needs friends even when he seems to be pushing people away. In this sense, autism chic is a small step toward understanding the world of autism.

But in another sense, it’s a distorting image of autistic people generally. Yes, these TV characters and my son are “on the autistic spectrum” — but — what a spectrum it is! Like millions of others, Walker is on the so-called “low-functioning” end. Because Sheldon Cooper and Sherlock Holmes et al. converse and support themselves, went to college and have occasional comically enhanced dates, they are good fodder for scriptwriters.

My son doesn’t have this kind of TV potential. All these characters can tell a doctor where it hurts. They can say “stop doing that” to someone hurting them. They can walk to the drugstore, select a toothpaste, pay with a credit card and return home without getting hit by a car or losing their wallets. They can chat with people about baseball, play cards, ride a bike. They can connect with others by exhibiting a special skill, a savant-like ability others find valuable or amazing.

My son, like many adults at the low end of the spectrum, cannot do any of these things. He’s a charming man with a warm personality and, for those who get to know him, a fun and rewarding friend. But Mr. Spock he’s not.

Instead, Walker needs a canny, well-funded, intensive support system. He needs society to recognize that his life can’t go forward without help, and help implies friendship, guidance, community and money. He needs people who like him and accept him on his own terms and are able to learn, like Holmes’ Dr. Watson, that a friend on the spectrum can be an excellent friend indeed.

Link to the magazine article

Robert Hughes ’72 MA, ’77 PhD of Chicago retired from teaching at City Colleges of Chicago in 2014. He has written two memoirs about his son, including Walker Finds a Way: Running into the Adult World with Autism (2016).

E-mail comments or questions to the editors at letters@northwestern.edu.

 

And What A Party It Was!

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Thanks to everyone who joined us Friday night for the Chicago Launch Party for Walker Finds A Way! What a terrific turnout for the reading, book signing and lively discussion at Chicago’s very own Women and Children First Bookstore.

Chicago activist Anne Sullivan posted:
The charming and witty author Robert Hughes, reading from his new book at Women and Children First Bookstore last night. To deal with the giant issues of an adult child with autism and still have the energy for this level of advocacy is inspiring! Read his books, then do something yourself to urge our legislature to fund services for people with disabilities. Illinois is the nations 5th richest state. We are 48th in funding for people like Walker. SHAMEFUL! Ellen Jividen Hughes, thanks for inviting me. You guys are the best.

More photos from the night:

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Book Launch Party!

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Book Launch Party for Walker Finds A Way

Friday, July 29, 7:30 pm

Women & Children First Bookstore
5233 N. Clark Street, Chicago

Reading by the Author – Q&A – Book Signing – Treats

Hope you will join us!

 

A doctor said my son had ‘no hope.’ At 30, he doesn’t let autism hold him back.

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5/16/2016

Robert Hughes is author of “Walker Finds a Way: Running Into the Adult World With Autism.”

Recently a moWashingtonPostphotomentous, fabulous, electrifying thing happened.

My son, my wife and I got into the car, and she asked him, as she always does, where he would like to go.

“No idea,” he said.

No idea!?  Ellen and I sat up in our seats. Our spirits rose like party balloons.  No idea!  We burst out laughing, and Walker smiled like a stand-up comedian who had just landed a joke.

Walker is not a 1-year-old starting to put words together. He’s a handsome, 30-year-old, 6-foot-3 man with severe autism. He speaks, a little. He converses not at all. He can barely tell people his thoughts. We had only very rarely heard a casual, flip response like this.

Normally our conversations are distilled imitations of conversations. Where do you want to go? “The mall.” What do you want to eat? “Pizza.” What do you want to do? “Zoo train walk” (his code for a long trek through the city). This little remark of his was, as far as we were concerned, Shakespearean. It seemed to reflect the lively, knowing, humorous look he has had in his eyes his whole life.

One of the many odd things about this scene was the reflexive joy that shot through his parents. Ellen and I are 66 and 67, respectively. Walker is well past the age of “development” as the elementary education world sees it. At his age, he is locked into the category of “low-functioning autism.” He is long past the cutting-edge, hopeful world of possible cures celebrated on TV and in the media. He has aged out of not only the education system but also plausible medical solutions to his condition.

Yet we reacted like young parents looking for a break in their toddler’s dire autism diagnosis. In fact, our reaction to small, even infinitesimal, signs of “breakthroughs” has remained the same all his life, despite what could be considered our stunning lack of success. He now lives in a group home, and we pick him up on weekends.

When Walker was born, autism was considered beyond the reach of medical science. In the late 1980s, when he was 3, a pediatric neurologist pronounced, after checking him out for 10 minutes, “I hold out no hope for this child.” He was a judge issuing life without parole. Story over. As Walker grew, however, the experts began to believe that with “early intervention,” a child could escape autism.

But salvation by early intervention implies doom without it. Someone like our son, who did not benefit from the wonderful methods we now know, is presumed by many to be beyond help. Conventional wisdom ruled out his successful growth as a child; today it rules out his growth as an adult.

But Walker himself clearly doesn’t buy this. He’s pursuing growth like a champ.

Ellen and I know this because we’ve seen the video. After his most recent lesson with his lifelong friend and speech teacher Maureen, we watched the session she recorded for us. There they sit at a table chatting about things to eat. Maureen says she likes strawberry yogurt. What does Walker like? He glances at the camera. He pauses. He leans back in his chair, closes his eyes, braces for a mighty effort, and shouts out the words like an Olympic shot putter throwing a heavy weight: “Chips and cheese!” He stays glued to his chair beside Maureen for an hour, never letting up on the intense and strenuous trying.

And at his vocational center, the staff — his good friends — help him deliver Meals on Wheels, help him try to do yoga, try to read books, try to dance, try to play games. Occasionally and strikingly, he does more than try and actually succeeds. He believes in himself because his friends do.

Ellen and I live by the healthy axiom that people our age — in their 60s, 70s, 80s — can grow and change. We see no reason why this isn’t true also for a positive young man who happens to have a terrible but only partially understood disability. There is no reason to set limits on how far he can go with a determined nature and a cohort of friends who believe in him. The secret here is not the goal, anyway; it’s the process. A happy life of friendship and working is all any of us wants at 60 or 70 or 80 — or 30.

Where do we all want to go? I have no idea. But a habit of hope can take us a long way.
Read on Washington Post site

 

 

Starbucks’ Grande Comfort for My Autistic Son

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Feb.15, 2016

Starbucks and the Grande Comforts of Familiarity for an Autistic Man

My son and I stroll through the doors of Starbucks looking every inch like a TV commercial for the place. Walker, a tall, handsome, smiling 30-year-old, leads me, his aging boomer father with shaky knees, like a star actor assisting the elderly. We look, I think, like some Madison Avenue-produced, one-minute scenario of father-son bonding. For the first five seconds of the ad, you feel some predictable tag line coming as in the old beer commercial, “Life doesn’t get any better than this.”

Then as we stand in line, Walker, who has severe autism, blows his cover — big time. His hands start shaking rapidly at his sides. He points with odd intensity to something in the glass display case and shouts, “CROISSANT!” Not smooth. Others standing near turn and check him out. Customers at tables spin around to see where the commotion is coming from. When they spot the source, though, they see a happy, gentle, grinning young man who’s having momentary trouble expressing himself. Smiles stretch from the counter to the window.

He loves this place. A commercial might suggest that the cafe is a local hangout for these two, but for us “this place” is actually any one of about nine spots in the greater Chicago metropolitan area. Walker needs to move fast, every day, so we drive far and for hours, and we walk, rapidly, for miles up and down Chicago’s North Side. But he also craves the reassuringly familiar. So driving takes us to a far north suburb — and a Starbucks. Walking means hitting the streets along a familiar route and also hitting the croissants in two or even three Starbucks along our route.

He loves his extended big city, but he also seems to like the way he can always count on stepping into the same Starbucks twice, or three times, or 90 times. Starbucks helps make our mega-city a small town: No matter how far we walk or drive, we still walk into the same familiar place where the barista knows his name.

When he was younger and not so able to control himself, I was never sure how a visit to any store or restaurant would go. Unable to express what he was thinking or what he was fearing, he could suddenly burst into a shouting, pushing, shoving explosion of impatience and fright. Just getting him out the door was a huge issue. But the baristas at Starbucks have always been helpful and nonchalant about his trouble, even when the issue was getting him up off the floor where he inexplicably had planted himself. Through repeated visits over the years, he has come to regard it as his place, and the baristas as his friends.

Of course, there is a huge, very obvious downside to the Starbuckization of America. Like McDonald’s and Taco Bell and Wendy’s, etc. — giant franchises crush local color and produce a more monochrome world. But this seems like a grumpy quibble when I see the smile on Walker’s face as he walks into one of his old familiar places. Severe autism creates a wall that blocks connection and isolates; it creates insecurity and the fear that one will not be able to cope with what life throws at you next.

So I say, in a limited way, bring on the franchise that breaks down a wall, if only for the 10-minute flashes of time that allow a bright charismatic young man to feel at home in the world.

Robert Hughes is the author of “Walker Finds a Way: Running into the Adult World with Autism.” He lives in Lakeview.
Link to Chicago Tribune article

 

 

Cruel Cuts to Autism Services

Scandalous cuts to autism services here in Illinois have hit service providers across the state in a devastating way. The Hope Institute, one of the finest agencies offering help for autistic people, has been hit very hard.

As I show in Walker Finds a Way, a Crisis Team from the Hope Institute essentially saved Walker’s life. This is the kind of help the state says it can no longer afford.

Who’s getting hurt and how?

Children, families, providers sort through ‘devastating’ cuts in autism-related services
 By Dean Olsen, The State Journal-Register, 2/3/2016

Families of Illinois children with autism are reporting declines in their children’s communication skills and heightened anxiety after the ongoing lack of a state budget prompted drastic reductions in services statewide.

Springfield’s Autism Clinic at The Hope Institute for Children and Families has heard from parents who are seeing their children regress socially after losing services that were made more affordable to low-income families through a $4.3 million grant to Hope’s statewide Autism Program.

Hope hasn’t received any of that money because of a state budget impasse that began July 1, the first day of fiscal 2016, more than seven months ago.

“The parents we talk to are frustrated,” said Clint Paul, president and chief executive officer of Springfield-based Hope Institute. “They feel the state has turned their back on them and doesn’t care. If a child is not receiving services, there’s a very good likelihood that their child will regress.”

Scientific evidence is clear that early intervention can prevent or reduce the amount of special-education services needed once a child is in school and when those services may be less effective.

Early intervention can lead to less spending on welfare benefits and other societal expenses associated with educational failure in the long term, Hope officials said.

“This is a cost that will just compound as a child gets older,” said Corey Moore, supervisor of the Autism Clinic.
Link to the full State Journal-Register article