5/16/2016

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

Recently a momentous, 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

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

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

Click here to buy Walker Finds A Way

The movie producer Sam Goldwyn once said about the release of a new film, “I don’t care if it doesn’t make a nickel. I just want every man, woman, and child in America to see it.”

Minus the not “make a nickel” part (nickels, plenty of them, would be highly appreciated) this is how I feel about my book released today, Walker Finds a Way: Running into the Adult World with Autism.

The subject of the book—what happened when my low-functioning child with autism “aged out” of the educational system at 22—is one of critical concern to parents, families, and our political system. All parents of severely autistic children, no matter how much progress they see the child make as he ages, experience an ever-louder and more piercing tornado siren of anxiety the closer the child gets to age 22.

What will happen? Where will he live? How will he live when we are gone? The political and social problem is also dire: what will society do to help a growing population of people who can’t help themselves?

I wrote this book to tell the hard truth about young people like my now 30-year-old son. I think in speaking for him I speak for many thousands of other young adults who have no voice, no ability to speak for themselves. There are many Breakthrough Books that tell wonderful stories about curing autism. But that kind of story arc is not what the troops experience on the ground: no critical breakthrough occurs, the child does not show signs of living independently, parental worry about the future goes through the roof.

In Walker Finds a Way I tell how Walker’s life in a group home was very good until it became less and less good and finally very bad. In navigating this disaster, in extricating him from a damaging group home and vocational program, we realized new things about our son: his hidden resilience, his sophisticated understanding of his plight, his determination to affect his own fate.

As his mother Ellen and I struggled to help Walker, we began to see the resourceful ways in which he was helping himself.  Lesson for his dim parents: Never, never underestimate him.

Another reason I wrote this book is because I know Walker’s story and ours is very much like that of other young adults with autism and their families. As I say in the book, “I’ve written this because nobody would pay attention to me if I stood with a megaphone at the corner of State and Randolph streets in Chicago, shouting, ‘My son and others like him are worthwhile people! Get to know them! Make friends with them! Your life will be enriched! And pass laws that will help them lead satisfying lives!’ Come to think of it, maybe people would pay attention in ways that would surprise me. It could be worth a try, actually.”

For now, I’ll stick to this book and this website, but I still won’t rule out the street theater. It’s too damn important.

Thanks to DNAinfo Chicago reporter Ariel Cheung for this excellent article using Walker’s story in Walker Finds A Way to illustrate the effects of dire service cuts in Illinois.

State Becoming like ‘Ancient Sparta’ with Cuts to Autism Services: Author

By Ariel Cheung | January 28, 2016
@arielfab

LAKEVIEW — Robert and Ellen Hughes didn’t watch Tuesday’s State of the State address.

As far as they were concerned, they’d seen enough to realize the state wasn’t functioning they way they needed it to. Worse, Robert Hughes said, “there’s no end in sight.”

Walker Hughes (l.) is the subject of his father’s second book, “Walker Finds A Way,” in which the Hughes family navigates the world of adult autism.

In fact, just two days earlier, the Hugheses learned the state’s largest social service provider, Lutheran Social Services of Illinois, was cutting 30 programs, unable to operate them with $6 million owed by the state that was seven months overdue.

Home care for seniors, adult protective services and a day care for adults with disabilities were among the suspended services.

It’s a situation the Hugheses understand all too well.

At the heart of Robert Hughes’ new memoir, “Walker Finds A Way,” is his son Walker’s transition into adulthood as a person with low-functioning autism in Chicago. After aging out of the school system at 22, Walker tests out independent life in a group home at the start of the book.

The smiling young man who adores country singer Clint Black, “popcorn parties” and long walks through Lincoln Park seems eager for a chance at independence, which his parents also grow to enjoy after a brief period of empty nest syndrome.

But as six years go by, Hughes writes that the quality of care at the home declined in an alarming way, leaving Walker desperate to express his distress with limited verbal abilities.

Hughes, who lives in Lakeview, describes a subtle shift in the North Side group home he blames on the state’s financial disarray — an added pressure for the home to take on too difficult of a workload.

“Behind this group home that went bad was the fact they were financially strapped,” Hughes told DNAinfo Chicago. “They were making up rationalizations about Walker because they didn’t have the staff to deal with the situation they had taken on.”

Hughes and his his Walker took daily walks for years, traveling from their Lakeview home to North and Clybourn, visiting Lincoln Park and making stops at Starbucks or Walgreen’s.

While Walker was unable to verbally tell his parents what was wrong, his physical decline spoke volumes, they said. In two months, he lost 65 pounds. He started coming home with bruises, and his parents were alarmed.

Yet they felt trapped, fearing that pulling Walker from the home would cost him state funding for the service or leave them trapped on wait lists for years.

As they grappled with limited options, Gov. Bruce Rauner announced in April 2015 — World Autism Month — that he was freezing $1 million of state support for people with autism, many of them children.

“Illinois isn’t ancient Sparta, where disabled infants were left to die of exposure on hillsides,” Hughes wrote in the memoir. “But some voters here seem to envy the practice.”

After writing “Running With Walker” in 2003, Hughes felt “his saga was over, as far as strangers reading a book about him were concerned.” In the first memoir, Walker starts off as a “severely active” 2-year-old in the 1980s. At the time, autism was believed to affect one in 10,000 births (now, it’s more like one in 45 children ages 3-17) and little was understood about the spectrum of abilities children with autism could display.

Walker Hughes, seen here as a child, is now 30 and continuing to forge his own path as an adult with autism.

As the first generational class of growing autism awareness reach adulthood, their changing needs are being considered at a national level. Earlier this month, presidential candidate Hillary Clinton announced a plan to improve safety, education, employment and housing for people with autism. Former Florida Gov. Jeb Bush and Ohio Gov. John Kasich have also addressed the topic.

As the Hughes family sought a solution to their turmoil, “I thought this is a story that should be told,” Hughes said. “People should know about this.”

“Walker Finds A Way” was released Jan. 21 and is available on Amazon.

Link to DNAinfo Chicago article 

Here’s the illustrious author enjoying the hell out of his illustrious book.

Get yours now!

• Jessica Kingsley Publisher
• Amazon
  
  
  
  

Walker,
Christmas Present

And a post from Christmas Past:

Chicago Tribune
December 24, 2006

Are these the shadows of the things that Will be, or are they shadows of the things that May be only?” Ebenezer Scrooge asks the Ghost of Christmas Yet to Come.

Surely fans of Charles Dickens’ “A Christmas Carol” find this scene the scariest in the story. It touches twin nerve endings: our fear of the future and our dread of death.

Unfortunately for me, I’ve experienced this moment, oh, upwards of 65 times, for “The Muppet Christmas Carol” is my autistic son Walker’s favorite film. For years, from the day after Thanksgiving until sometime after New Year’s when I have the courage to put a stop to it, Walker plays this video nearly every day, the words and songs serving as a background to whatever else is going on in our house. I’ve learned to tune it out, but when Scrooge reaches that moment when he begs to know the future, I cringe, if only a little.

As the years race by, Scrooge’s question becomes more and more urgent. My wife, Ellen, and I are 57; Walker is 21. His autism is so severe that he can’t–so far–converse or do productive work. He can’t safely leave the house alone. He can’t tell a doctor what’s wrong when he feels sick.

What will happen to Walker when we’re gone? Or, in the blunt words of countless friends and acquaintances, “What’s your plan?” (It’s amazing how frequently we’re called upon to make casual conversation about our inevitable demise.)

“What’s yours?” and several other not very snappy comebacks teeter on the tip of my tongue but are never uttered. I know that the question is a natural and obvious one, the elephant in the room. But the real answer I want to give is complicated, for the future is only one element in the juggling act the two us must perform as parents.

The short answer is, “We’re doing our best.” While not impoverished, we never seem to have an extra dime. So we work feverishly with a private foundation to establish a group home for Walker and other kids like him, a neighborhood residence where he can have his own world and do his nearest approach to normal work. All the while we do this, we are astonished at the lack of interest that state and federal governments have in a problem that will someday explode in all our faces. According to figures from the National Centers for Disease Control and Prevention, autism now afflicts up to 1 in 166 children and the numbers are getting worse. What will happen to all these children as they reach adulthood? Where is the No Adult Left Behind program that will face this problem honestly?

The future is only one ball we must keep aloft. Another, contradictory one, is hope–Walker’s dreams for his own life and ours for him.

No one is sure what causes autism or how it can be cured, but solid scientific knowledge about it grows steadily. So we persist in trying new medications–he now takes two new Alzheimer’s drugs that seem to have helped him with his concentration and following through on tasks–and trust in his own incredibly positive spirit.

He works hard and happily at writing sentences on his computer. He goes off to his special school each day with a grin and a spring–I should say, leap–in his step. And he tries every waking moment to say things to us, to make his thoughts known. And yes, he does improve, slightly, all the time.

The third ball, for us the trickiest one, is the challenge of valuing Walker as he is, here and now. He can be difficult. He’s a strong, 6-foot-3-inch young man who can suddenly, explosively jerk away from me and run through the mall laughing and shouting “french fries!” to the shock of everyone around us. He can, playfully but incessantly, repeat one-word demands until people feel like running screaming from the room.

But he’s also a charming, flirty, engaged guy who can suddenly turn off the “Law and Order” episode his parents have seen three times before, fall giggling onto the sofa, and with a gleam in his eye shout, “It’s a party all the time!”

Walker is rewarding to live with. Contrary to a recent theory that says autistic people lack empathy, he’s the emotion barometer of the family.

The real challenge that Ellen, Walker’s brother, Dave, and I have is empathizing with him, getting at the motivations and thoughts and needs of a young man who often seems like a kidnapping victim with duct tape over his mouth.

Years ago I saw a circus performer on TV juggle–successfully!–a flaming torch, a sword, and a bowling ball. It was dangerous, it was “impossible,” but most of all, it was funny. This is how my juggling act as a father often feels: risky, contradictory and absurd.

But as Walker cheers happily for the quadrillionth time at the end of his favorite movie and looks into my eyes for my response, I cherish Dickens’ words about the resurrected Ebenezer Scrooge: “His own heart laughed: and that was quite enough for him.”

Thanks to Chicago Tribune columnist Mary Schmich for her insightful column about holiday traditions at our house – and many, many houses like ours.

Walker Hughes, 29, gets a goodbye kiss from his mother, Ellen Hughes, at the Clearbrook CHOICE Center in Evanston. (John J. Kim / Chicago Tribune)

Release Date: 1/21/16

Here it is – ta da – my new book! 

It’s called Walker Finds a Way: Running into the Adult World with Autism.  A sequel to Running with Walker, this book  catches up on life since then, while focusing on the catastro-comedy of my autistic son Walker’s life in the last three years or so.

Running with Walker ended when Walker was 15, with a hopeful and positive feeling about the future.  Things continued to go well for several years until he entered a new land of troubles. Walker Finds a Way chronicles how Walker found an escape route and taught his parents a great deal about autism and life in general. It provides an intimate look at a family and a glimpse of an issue that looms larger in society year by year.

Walker is one of a growing population of young people with low-functioning autism. All over the U.S., when children “age out” of state-supported services, they and their parents suddenly find themselves abandoned by a system that purported to care. Adults with disabilities are practically invisible in comparison to young children with the same difficulties. How can people like Walker lead secure and satisfying lives? How can they have friends and work and feelings of self-worth? How can they make progress throughout their lives in connecting with others?

Walker Finds a Way explores these issues by looking closely and honestly at how one family—ours—faced them. It’s a book—if I do say so myself—that would be rewarding for any reader but especially for family and friends, teachers and caregivers of people with autism.

More information, and to order Walker Finds A Way