Robert Hughes 2009 on 'Running with Walker'

Running with Walker is the story of how Robert and Ellen Hughes coped with their son Walker's autism - it is an incredible journey for any parents to go through. Here Robert has very kindly answered Jayne's questions. In the picture above Robert is on the left with Walker on the right.

J: This book is full of the trials and tribulations you went through with Walker, did you find it hard to put it down in writing?

RH: At first I found it very difficult. As a freelance writer, I had come to think of myself as a would-be "humorist." I wrote short comical pieces for magazines and newspapers about family life, a little bit like Dave Barry or Robert Benchley. But as our family life got more and more outside the "normal"-way, way outside, I'd say-I didn't know how I could connect with a general audience about our odd lifestyle. As you know, autism is overwhelming to a family and it determines the hour-by-hour goings on.

But in 1997 I put together an essay about Walker for Newsweek magazine (I've included a PDF of it in this message) and this got me thinking that I could actually do it. And after I wrote a longer piece for Chicago Magazine I felt I had gotten into a groove, had a knack for it.

J: When Walker was younger did you ever think that life would be so hard for you as a family after he was born?

RH: Oh, no. It's a good thing we don't have the "gift" precognition, eh? Who would lunge forward smilingly into the jaws of the Rottweilers along the road ahead? My wife Ellen and I actually thought we could beat this thing, or rather that Walker could. In fact, in a weird way, despite the fact that at age 23 Walker remains "uncured," we still think he can beat this thing. There's a lot to be said for denial and cockeyed optimism as a way of life. Intelligent hoping brings out the best in him and us.

Parents who get a diagnosis of severe autism in their child should never predict doom or horror. Prediction is a self-fulfilling prophecy.

Every child is different, every family is different, and medical help keeps improving. Ellen and I kept thinking: What if we raised Walker in an atmosphere of catastrophe and then it turned out that he was cured by a pill at age 25? What a waste that would be. So we tried to live as happily as possible in the here and now, a day at a time, willing to look like chumps if ultimately we all go down in flames.

J: There seems to have been many issues not only with Walker but also with your other son, did you find it hard to cope with both their disabilities?

RH: Yes. In fact, my other son's troubles have been, in a way, more difficult for Ellen and me as parents. The child who can talk, can give voice to his prob lems, inevitably gets more attention. I don't discuss Dave very much in the book, simply because I feel that he can speak for himself. He's a terrific writer and some day, if he wants, he may write about his life. Walker can't voice his trouble and part of my object in the book was to speak for him.

Dave has lived with OCD, depression, and Addison's Disease most of his life. These probems wreaked havoc on him and us. But he's blessed with a gift for writing stories and he has written wonderful plays, short stories, novels, graphic novels and cartoon strips for years. We're very proud of him.

J: It is extra-ordinary that when a child is so young when he is diagnosed that society can automatically assume he will never succeed in anything - did you find this aspect hard to deal with?

RH: Sure. This is why we initially home schooled him. Teachers and therapists usually had preconceived notions of limits for autistic people, limits that have since been proven false and were based on very little research. We steered clear of them until we found good teachers who took their cues from him and thought the sky's the limit.

J: Walker showed some amazing insights into the world around him and his sense of humour must have made some days with him real magic is that the way you saw it as a family?

RH: We made a religion of appreciating the here and now, of look ing for the tiny positive signs in his behavior. And they were always there. Walker had and still has a wide-eyed appreciation of life and the people around him. He's my shaman. I'm always trying to emulate his love of life.

J: How did you deal with peoples constant disapproval, especially when he would play up in the supermasrket.

RH: Sometimes pretty badly. I usually didn't actively make a scene, but I did fume silently and self-destructively. But I have noticed that over the course of his life as autism has become a household word, people seem more knowledgeable and more understanding of his odd behavior. I would say, by and large, strangers have been pretty kind and respectful. It's just that the exceptions are so galling.

The supermarket scenes stand out especially, since it seems Walker and I have spent a lot of time shopping for food. We have always made friends with certain checkout clerks and he came to look forward to seeing them. When you let strangers in on your life, they're often very pleased. We all need more friends.

J: What gave you your strength to cope when worrying about the boys and their diagnosies.

RH: Two things gave us strength: The first was that we spent so much time with Walker and felt we knew him so well that negative diagnoses seemed ignorant. We knew he was smart, that he loved the people in his life, that he wasn't lost in world of his own," that he had empathy and good sense of humor. So even when a doctor was basically right about him, there was so much missing and unaccounted for in the diagnosis, so much that we knew was wrong, that we were seldom intimidated.

The second was each other. Ellen and I had the sheer luck of agreeing about Walker and what we had to do. I say "luck" because nobody interviews a potential marriage partner on the topic of How You Would React to Having a Child with Autism. So when Ellen despaired, I didn't, and vice versa.

J: Did you ever meet with other parents that really understood what you were dealing with?

RH: No. In the late 1980s and through the 90s we found that most parents-at least the ones we met-believed that after a diagnosis they were supposed to "grieve," then after their grieving period was over, accept how limited the child's life would be. Since this grief idea was seemed preposterous to us, we just wanted to get on with education and shoot for the stars. We did find that some good friends who did not face this problem could listen and give smart encouragement, and we did lean on them.

J: Did you feel like you were acting as prison warders when you could not leave the door unlocked in case Walker escaped?

RH: Not really. I joke in the book that we were his prison guards, but I just mean that it seemed unnatural and weird to have to take so many precautions to keep him safe. The ultra-protectiveness was just a part of the household atmosphere, part of our odd routine. But it was low on the list of annoying problems.

J: I found this story immensely moving and could feel the frustration that you and your wife suffering especially with both having special needs did you ever feel like giving up?

RH: No, we never actually gave up in any big way. We never sought out any other residence for Walker, for example. But of course we "gave up" in short bursts of severe exasperation very often. The key thing for a parent is to know that this will happen-almost uncontrollably-and that one has to get past the feeling, forget it.

J: I felt for your wife when she went to mums and toddlers and was felt to feel like a freak, How, did it make you feel when there was no way of protecting her from the other parents attitude?

RH: I always got very upset when Ellen told me about these adventures.

Again, our shared attitude helped. We usually were able to talk through our feelings and buck each other up. Also, I usually realized that it was a very good thing that she had been the parent present in these situations. She always handled them with way more wit and strength than I could have mustered.

J: When Walker started to run did you ever think that you would be able to take him for long runs and that he would understand that roads meant danger?

RH: I was absolutely delighted that he liked running, and knew it would be a release for him and for me. Now I also knew that there was no way I would be more than a couple of feet away from him-ever-on these runs. Now he's 23 and I'm pretty sure he has a good grasp of the danger of traffic. But he still has a wild edge that makes him untrustworthy near stop lights and stop signs. To this day I can't let him approach a corner alone. At his group home, however, they're doing a better job than I could of letting him have a little more independence.

J: How is your other son coping now with his ADHD, you don't say a lot about him?

RH: Dave is doing great in college. He lives at home with us and is astonishingly productive in his writing work. We're very proud of him. He has had a play produced at his college and has published a couple of stories. He's unstoppable. He still copes with depression but has largely overcome his OCD and ADHD.

J: What is Walker doing now since the end of the book?

RH: Walker lives in a group home created by his special school. The home has 6 residents and a fantastic staff. It's a lovely old house next door to his school (Which is also in a lovely old house). It's about a ten minute drive fr om our house on the north side of Chicago. I pick up Walker every Saturday morning and bring him back Sunday afternoon. He's happy to come home and happy to go back to his friends. Here's the web address of his house: http://www.pactt.org/ He has a small job emptying trash in a nursing home (and has an aide).

He goes to school for vocational training every day and loves it. He and his house mates love to work, with a passion.

Oh, and Walker voted! He voted for Obama and his was a very informed decision. Every morning during the presidential campaign, the staff read the newspaper with and to the residents and talked about the issues. Walker was very proud of his vote.

J: What would you suggest is the best thing a parent can do to help get the education and the start in life for their autism challenged child?

RH: I hope this list isn't too flip. This was the basis for a talk I gave to a parent group last night:

Bob Hughes's Top Ten Truths for Parents of Children with Autism or Lessons from the dark side of disaster-prone parenting:

10. You know your kid better than any expert.

9. But you don't know your kid as well as you think you do.

8. Your kid is not "autistic" in the sense of "lost in a world of his own."

7. Your kid wants friends just as much as you do.

6. Your kid is always trying to communicate. Always.

7. Your kid has empathy-it just doesn't take the forms you expect.

4. Your kid can be helped by the right kind of self-fulfilling prophecies.

3. Your kid needs you to be firm, friendly, not freaked out.

2. Your kid needs to enjoy the here and now.

1. Your kid wants a job.

J: What really hit you when Walker asked you to write down the route you had taken for your run?

RH: Walker loves lists and loves his schedule. It's a bit daunting. He can insist that I write a list while driving on a highway; he can stop me 12 times walking a short distance to write a long list over and over. When he's more relaxed, he does this much less.

J: What are your plans for the future for Walker and his brother.

RH: We're very happy with Walker's progress and how happy he is in his group home. It's ideal. But we worry that it can continue. I think the whole world has heard about our disgraced Illinois governor. Well, Illinois ranks dead last in the U.S. in the support it gives to adults with disabilities, and the governor was a big part of the problem. It's an uphill battle to get the political and philanthropic backing we need.

Dave is making his own plans. He will probably support himself with graphic design work until he breaks through with one of his artistic projects.

Ellen and I are very hopeful and very proud of Walker and Dave.