A Father's Journey with Autism: Book Review

I had numerous professional and personal distractions while reading A Different Kind of Boy. Some days I thought I would not get back to the books for months. Yet, in spite of a tough summer, I kept coming back to the book because I was hooked. Because it was so good.

A Different Kind of Boy: A Father's Memoir about Raising a Gifted Child with Autism was written by Daniel Mont, an economist who specializes in disability and welfare issues and who worked as an Assistant Professor at Cornell University, for the U.S. Government and the World Bank. He is the father of Alex, who is autistic and Simon, who is Neurologically Typical, or NT. He is the husband of Nannette Goodman.

Alex was born in 1987 and his delivery was atypical. How much this has to do with his autism, no one will ever really know. But it was the beginning of a plethora of atypical developmental milestones, from keen observation skills at a very early age, a high I.Q, a love of spinning objects, difficulties showing emotions to being a math whiz.

Some of these are symptoms of autism, which, according to the Autism Network International (ANI), typically appear during the first three years of life. ANI, in its definition of autism also states that "it occurs in approximately 15 out of every 10,000 births and is four times more common in boys than girls. It has been found throughout the world in families of all racial, ethnic and social backgrounds."

And so, Daniel and Nannette loved, played with and observed their first child, Alex. They saw his precocity with books and numbers, something that any parent would be proud of. They tired of his perseveration with Dr. Seuss and rhymes. They worried about his lack of interest in other children, including his new baby brother, born when Alex was two years old. They feared even routine journeys through their hometown of Ithaca, where Alex would scream if anyone attempted to open a door for them - a task he relished as his everyplace, at all times. And they would die inside when neighbors and strangers gave them disapproving or strange looks when they were out and about with Alex.

The book details all of these experiences, feelings and the journey of discovery that their son is autistic. It is so very readable and filled with "ah-ha" moments for other parents of autistic children and for every lay person or professional reading the book. It should be required reading for any teacher in training, not only in special education studies, but for all in education and early child development. And of course it is a gift to all parents of an autistic child.

Learning the ropes

Dr. Mont intersperses anecdotes from the family's journeys with some of the best practical parenting lessons for all children, including those with autism. For example, he talks about teaching rules to Alex, and how life continuously requires adaptation and exceptions to these rules. But nonetheless, it is important for children to learn these, and it is absolutely critical for autistic children to learn them as early as possible.

One example is when they were trying to teach Alex how to tell if someone is speaking to him. They first taught him to look for people looking at him and talking. O.K., that worked until Alex came back with the observation that if his dad was driving and talking to him, he was not looking at him. Or, that you can seat yourself and wait to place an order in a restaurant, unless there is a sign to wait for seating, or unless in a fast food restaurant where orders are placed at a counter. And when his younger brother Simon used imaginary play to try to go to the moon - it took a great deal to persuade Alex that this was not a lie. Alex might miss inferences and body language cues, but he was so bright that he could always pick out exceptions to the rules, whether concerning math problems or daily life.

Or, we read about how the family used flow charts and lists to help Alex cope with emotional situations and his atypical responses to sounds and other sensations. They learned that logic was often their salvation - except when there was an exception! Alex was very typical of so many with autism who perceive the world as overwhelming and confusing, but can learn to adapt and even thrive when structure and certainty can ground their lives.

It took a few years for the Monts to get the diagnosis of autism. When he was in nursery school, his teachers called for a conference to discuss his problems and this, together with gentle pushing from colleagues, persuaded the Monts to have Alex evaluated. When the diagnosis of autism came back, in part the Monts were relieved, a feeling often echoed by parents who know something is needed for their child but they are not sure yet what it is. They then proceeded to advocate for the best education and special services while they continued to love him as the same son he was before the diagnosis. But, as all parents know, especially those with children having unique requirements - life can be exhausting.

Learning from peers and role models

Alex attended an integrated school with additional support. They founded an organization called HiFAN (High Function Autistic Network) to be in touch with and support parents of autistic children like Alex. They learned all they could about autism, getting in touch with the Autism Network International (NSI) and every other professional organization they could locate. But their greatest gift came from hearing the voices of autistic adults - who served both as positive role models of a life possible for Alex and taught them more than anyone else could about life with autism. Following this article you will find a reprint of "Don't Mourn for Us" by Jim Sinclair, reprinted with permission from Mr. Sinclair and ANI. Reading it, the Monts learned what people with a variety of disabilities tell us over and over and over again - that their life has value, adventure, capability and a future. And, that often, it is society and those without autism (or other disabilities) than limit one's capacity and potential. And often there is an advantage in living life in this way. As Nannette Mont says "He thinks outside the box because he doesn't realize there is a box". This is what many of us working in the disability field say all the time - people with disability have much to teach the rest of the world about daily adaptations, flexibility, creativity, etc.

So we watch the Monts breathe a sigh of relief, somewhat at least, about what was possible for Alex in the future. They attended their first conference for autistic people where Alex was the one making decisions about the amount of stimulation and interaction he would have. What a gift to Alex and his family.

Schools and rules

When the family moved from Ithaca, N.Y. to the Washington, D.C. area, they had to find at least the same level of support for Alex in his second grade classroom and beyond. Plus, his new school and classroom had to learn about Alex, everything from his telling the teacher that she was two minutes off schedule when she began a lesson to how Alex helped his class win the Math Olympiad. The family had their first article written about them - and here they learned a lesson often shared by parents who have children other than one who is disabled - that sometimes it is the "other" child who is forgotten, as was the case in their first article. The family was famous - but it was Alex who called the shots and decided they would not interview for other articles or TV programs.

The book ends with Alex still in elementary school. Today he is in high school and had his first summer job at a physics lab at the National Institute of Standards and Technology. We are told that he continues to be more self-aware about his difference. Daniel and Nannette Mont still worry about Alex's acceptance in the real world.

Now 17 and quite articulate at expressing himself, especially in writing, Alex has mixed feelings about his involvement with the non-autistic world. He believes that the emphasis that non-autistic people put on social interaction and relationships can be a liability because it fosters a dependence on others for happiness, interferes with decision making, and leads people to engage in self-destructive behaviors in order to gain acceptance. Because of this, Alex does not believe "that the lack of social acceptance will hinder my ability to operate in the real world. I may not make as many friends or chat on the phone as much as non-autistic people, but I don't believe I will be any less happy for it."

At the end of the book, we learn that Alex has counted 6562 rules he has been given; we learn from Dan that the maximum amount that a young man like Alex should be given at one time is three; and that father and son continue to learn from each other...

A Different Kind of Boy: A Father's Memoir about Raising a Gifted Child with Autism

Jessica Kingsley Publishers
116 Pentonville Road
London N1 9JB, U.K.
www.jkp.com

For more information:
www.ani.autistics.us

Follows is a reprint of "Don't' Mourn for Us" by Jim Sinclair

DON'T MOURN FOR US
by Jim Sinclair

[This article was published in the "Our Voice," the newsletter of Autism Network International , Volume 1, Number 3, 1993. It is an outline of the presentation I gave at the 1993 International Conference on Autism in Toronto, and is addressed primarily to parents.]

Parents often report that learning their child is autistic was the most traumatic thing that ever happened to them. Non-autistic people see autism as a great tragedy, and parents experience continuing disappointment and grief at all stages of the child's and family's life cycle.

But this grief does not stem from the child's autism in itself. It is grief over the loss of the normal child the parents had hoped and expected to have. Parents' attitudes and expectations, and the discrepancies between what parents expect of children at a particular age and their own child's actual development, cause more stress and anguish than the practical complexities of life with an autistic person.

Some amount of grief is natural as parents adjust to the fact that an event and a relationship they've been looking forward to isn't going to materialize. But this grief over a fantasized normal child needs to be separated from the parents' perceptions of the child they do have: the autistic child who needs the support of adult caretakers and who can form very meaningful relationships with those caretakers if given the opportunity. Continuing focus on the child's autism as a source of grief is damaging for both the parents and the child, and precludes the development of an accepting and authentic relationship between them. For their own sake and for the sake of their children, I urge parents to make radical changes in their perceptions of what autism means.

I invite you to look at our autism, and look at your grief, from our perspective:

Autism is not an appendage

Autism isn't something a person has, or a "shell" that a person is trapped inside. There's no normal child hidden behind the autism. Autism is a way of being. It is pervasive ; it colors every experience, every sensation, perception, thought, emotion, and encounter, every aspect of existence. It is not possible to separate the autism from the person--and if it were possible, the person you'd have left would not be the same person you started with.

This is important, so take a moment to consider it: Autism is a way of being. It is not possible to separate the person from the autism.

Therefore, when parents say,

"I wish my child did not have autism,"

what they're really saying is,

"I wish the autistic child I have did not exist, and I had a different (non-autistic) child instead."

Read that again. This is what we hear when you mourn over our existence. This is what we hear when you pray for a cure. This is what we know, when you tell us of your fondest hopes and dreams for us: that your greatest wish is that one day we will cease to be, and strangers you can love will move in behind our faces.

Autism is not an impenetrable wall

You try to relate to your autistic child, and the child doesn't respond. He doesn't see you; you can't reach her; there's no getting through. That's the hardest thing to deal with, isn't it? The only thing is, it isn't true.

Look at it again: You try to relate as parent to child, using your own understanding of normal children, your own feelings about parenthood, your own experiences and intuitions about relationships. And the child doesn't respond in any way you can recognize as being part of that system.

That does not mean the child is incapable of relating at all . It only means you're assuming a shared system, a shared understanding of signals and meanings, that the child in fact does not share. It's as if you tried to have an intimate conversation with someone who has no comprehension of your language. Of course the person won't understand what you're talking about, won't respond in the way you expect, and may well find the whole interaction confusing and unpleasant.

It takes more work to communicate with someone whose native language isn't the same as yours. And autism goes deeper than language and culture; autistic people are "foreigners" in any society. You're going to have to give up your assumptions about shared meanings. You're going to have to learn to back up to levels more basic than you've probably thought about before, to translate, and to check to make sure your translations are understood. You're going to have to give up the certainty that comes of being on your own familiar territory, of knowing you're in charge, and let your child teach you a little of her language, guide you a little way into his world.

And the outcome, if you succeed, still will not be a normal parent-child relationship. Your autistic child may learn to talk, may attend regular classes in school, may go to college, drive a car, live independently, have a career--but will never relate to you as other children relate to their parents. Or your autistic child may never speak, may graduate from a self-contained special education classroom to a sheltered activity program or a residential facility, may need lifelong full-time care and supervision--but is not completely beyond your reach. The ways we relate are different . Push for the things your expectations tell you are normal, and you'll find frustration, disappointment, resentment, maybe even rage and hatred. Approach respectfully, without preconceptions, and with openness to learning new things, and you'll find a world you could never have imagined.

Yes, that takes more work than relating to a non-autistic person. But it can be done--unless non-autistic people are far more limited than we are in their capacity to relate. We spend our entire lives doing it. Each of us who does learn to talk to you, each of us who manages to function at all in your society, each of us who manages to reach out and make a connection with you, is operating in alien territory, making contact with alien beings. We spend our entire lives doing this. And then you tell us that we can't relate.

Autism is not death

Granted, autism isn't what most parents expect or look forward to when they anticipate the arrival of a child. What they expect is a child who will be like them, who will share their world and relate to them without requiring intensive on-the-job training in alien contact. Even if their child has some disability other than autism, parents expect to be able to relate to that child on the terms that seem normal to them; and in most cases, even allowing for the limitations of various disabilities, it is possible to form the kind of bond the parents had been looking forward to.

But not when the child is autistic. Much of the grieving parents do is over the non-occurrence of the expected relationship with an expected normal child. This grief is very real, and it needs to be expected and worked through so people can get on with their lives--but it has nothing to do with autism.

What it comes down to is that you expected something that was tremendously important to you, and you looked forward to it with great joy and excitement, and maybe for a while you thought you actually had it--and then, perhaps gradually, perhaps abruptly, you had to recognize that the thing you looked forward to hasn't happened. It isn't going to happen. No matter how many other, normal children you have, nothing will change the fact that this time, the child you waited and hoped and planned and dreamed for didn't arrive.

This is the same thing that parents experience when a child is stillborn, or when they have their baby to hold for a short time, only to have it die in infancy. It isn't about autism, it's about shattered expectations. I suggest that the best place to address these issues is not in organizations devoted to autism, but in parental bereavement counseling and support groups. In those settings parents learn to come to terms with their loss--not to forget about it, but to let it be in the past, where the grief doesn't hit them in the face every waking moment of their lives. They learn to accept that their child is gone, forever, and won't be coming back. Most importantly, they learn not to take out their grief for the lost child on their surviving children. This is of critical importance when one of those surviving children arrived at the same time the child being mourned for died.

You didn't lose a child to autism. You lost a child because the child you waited for never came into existence. That isn't the fault of the autistic child who does exist, and it shouldn't be our burden. We need and deserve families who can see us and value us for ourselves, not families whose vision of us is obscured by the ghosts of children who never lived. Grieve if you must, for your own lost dreams. But don't mourn for us . We are alive. We are real. And we're here waiting for you.

This is what I think autism societies should be about: not mourning for what never was, but exploration of what is. We need you. We need your help and your understanding. Your world is not very open to us, and we won't make it without your strong support. Yes, there is tragedy that comes with autism: not because of what we are, but because of the things that happen to us. Be sad about that, if you want to be sad about something. Better than being sad about it, though, get mad about it--and then do something about it. The tragedy is not that we're here, but that your world has no place for us to be. How can it be otherwise, as long as our own parents are still grieving over having brought us into the world?

Take a look at your autistic child sometime, and take a moment to tell yourself who that child is not. Think to yourself: "This is not my child that I expected and planned for. This is not the child I waited for through all those months of pregnancy and all those hours of labor. This is not the child I made all those plans to share all those experiences with. That child never came. This is not that child." Then go do whatever grieving you have to do-- away from the autistic child--and start learning to let go.

After you've started that letting go, come back and look at your autistic child again, and say to yourself: "This is not my child that I expected and planned for. This is an alien child who landed in my life by accident. I don't know who this child is or what it will become. But I know it's a child, stranded in an alien world, without parents of its own kind to care for it. It needs someone to care for it, to teach it, to interpret and to advocate for it. And because this alien child happened to drop into my life, that job is mine if I want it."

If that prospect excites you, then come join us, in strength and determination, in hope and in joy. The adventure of a lifetime is ahead of you.

Reprint permission: All articles published in "Our Voice" may be freely copied and shared for personal use, and reprinted in other publications, provided the original author and publication credits are included in all copies or reprints. If you reprint any of my articles, I would appreciate being sent a copy of the publication containing my article. My mailing address is:

Jim Sinclair
P.O. Box 35448
Syracuse, NY 13235

 printer-friendly format