Somewhere Over the Sea (13 page)

It may well be admirable to bear the weight of literary fame at an early age, as the girl on stage is doing now, responding with studied self-assurance to the audience's enthusiastic bravissimos. But if you ask me, that's nothing compared to the unflinching way you carry your life, each and every day, and all too often at the risk of being booed off the stage.

Now I hear our names, and it feels as if we're being summoned from the playground to the principal's office because we've done something wrong and are about to be reprimanded. Naturally, I'm nervous and tense. It's one thing to sit hidden behind a screen and write about you, but to stand exposed on stage and talk about you — about us?

Yes, dammit! If you can do it, then I can do it too. And what's more, it's you I'm talking to; this is all about you. So listen:

I start with a few words about your problems, what typifies them, and what it was like to be told by the doctors that our son was born with certain difficulties he would have to struggle with all his life, but for which they — the doctors — unfortunately couldn't give us any real explanation. They couldn't say anything definite about the causes of the problems, and they were uncertain about the degree of hardships we might expect them to cause you. The only thing they were certain about was that your problems had a name, and so they gave you a so-called diagnosis.

Naturally it came as a shock, perhaps less for Mom, who suspected something was wrong, than it was for me. It was as though I refused to believe there could be anything wrong with my son. Instead I comforted myself with the thought that you would develop at your own pace and in your own time, and that all would work out in the end. It was, I told myself, just a question of being patient, of letting time and maturity work for you. But then we got the diagnosis, and there was no longer any point in protesting.

A diagnosis. You have no idea how many times I've twisted and turned that word around in my head, trying to come to terms with what it means, what it implies for you and for us, your family. And I have come to think that with a problem as deep-seated and pervasive as yours, the diagnosis itself can in many ways be compared to having a grave to visit for a mother or father who has lost a child.

This may sound extreme, almost brutal. But all I mean to say is that there's a certainty there, a kind of clarification; a grave is a concrete place to go to with one's grief and one's loss. However, a grave doesn't have much more to offer than that. It cannot give the child back to his or her parents, no more than it can explain why this awful thing has happened, nor how to learn to live with it.

In that sense it's similar to your diagnosis: It solves nothing. It can't help you be like the others, and it doesn't explain which connections in your neurobiological circuitry are functioning in a different way; nor why you, and not someone else, have been afflicted; nor what we can do to help you and ourselves to live with your problems.

Then what use is it? You have a perfect right to ask.

I'm sorry, son, but again, I'm at a loss to answer you. The only way you can use the diagnosis is to identify your problems. It won't make them go away. It will just give them a name to use when you talk about them, a name that will, hopefully, help other people understand why you are the way you are.

We've talked about this before, how names can be important. Names are what keep the world in order when we talk to each other about it. Names are what enable us to know what we're talking about.

Many years ago you explained this to me yourself in your own way. You must have been about ten or twelve years old, an age when you thought you knew all you needed to know about what a real Indian was. You came up to me with an unusual glint in your eyes and asked:

— Hey Dad, if you had a friend who was a real Indian, would you call him up once in a while to find out how he was?

I, who in my innocence thought that you were investigating the extent of my kind-heartedness, at once replied that if the Indian were a good friend of mine, then of course I would call him up from time to time to make sure he was all right.

At that you grinned hugely, certain that on this occasion you had the verbal advantage over me, a practical understanding of the significance of a name.

— No, you said. Because if your friend had been a real Indian, then he wouldn't have had a telephone!

This little story of yours raises a chuckle in the audience. I use the interlude to wind up my introduction with a few words about why I wrote this book to you, and why I wrote it the way I did, in the form of a long letter.

It was, I say, first and foremost because I had to find a form that did not compromise you, a form that would enable me to look you in the eye — and myself in the mirror — when the time came for you to read what I had written. I wanted there to be no reason for you to feel misunderstood or exposed or betrayed, and therefore I had to be on guard against anything that might seem hurtful or sensational or improper or vulgar. I also needed to find a form that compelled me to be open, honest, and — to the extent it might be necessary — to reveal unpleasant sides of myself as well. I had to avoid prettifying or idealizing the situation. That, it seemed to me, would be tantamount to not taking you, your problems, or myself seriously. Another form of betrayal.

I spent a long time experimenting with different ways of doing it, but nothing worked until I finally decided to write you a letter. When a father writes a letter to his son, I thought, a letter that will also be read by others, strangers, then he cannot permit himself to write hurtfully or superficially or poorly. Whether or not I have succeeded, in the final analysis only you can be the judge of that.

Now it's time to read an extract. This is the part I have dreaded the most, even though I've done it many times before, because it always feels oddly private to be sharing my thoughts about you, and to you, with others.

At the same time — and without it seeming the least bit contradictory — I look forward to it, because when I stand in front of the microphone with the book in my hand and look down at the sentences I have written (though in fact I know most of them practically off by heart), you appear before me so clearly it's as though we're standing there together.

I open the book to the page I've decided to read from, and in my mind I reach out a hand and take yours. I feel the security and encouragement that flows from you, and so I begin.

Afterwards, I close the book and thank the audience for listening. The room remains silent for a disquietingly long time. Then the applause comes, but it seems strangely reserved, not as enthusiastic as I had hoped.

The moderator replaces me at the microphone and rather hesitantly announces that the next and final guest really needs no introduction. She is a revered grand old lady of American letters, and without a doubt the main attraction for the audience.

The silence in the room is palpable as she strides onto the stage. She stands there with a few sheets of paper in her hand and seems to draw out the silence, as if unsure what to do. And then she pays us — you and me, Gabriel — the greatest compliment I can imagine. She stares down at her manuscript for a long time before setting it down, then lifts her gaze towards the room and says firmly:

— You know what? I think we should all just go out into the park and think about things for a while.

And that's where I'm sitting now, on a bench in the park, finishing off this email to you that has turned out to be so much longer than I intended. But it's late evening here, and therefore early morning where you are, so you should have plenty of time to read it.

Have a good day, son. Talk to you soon.

Big hug from Dad.

AFTERWORD

T
he “problems” that are referred to in this book have been diagnosed respectively as atypical autism and
ADHD
.

Autism (from the Greek auto, meaning “one self”) is a so-called pervasive developmental disorder. It is called “pervasive” because it affects crucial functions such as the ability to communicate and to understand interaction with others, and because it affects behaviour in all contexts and situations. We don't know the exact cause, but scientists agree that autism results from an abnormal development in the nervous system that causes certain brain activities to develop in a different way than they do in most people. Although more than sixty years have passed since the American psychiatrist Leo Kanner first used the term autism as an independent diagnosis for people suffering from such a developmental disorder, no one has yet been able to explain why and how it arises — although some theories seem more plausible than others. Furthermore, many will argue that the children who meet the criteria for autism are so different from one another in their development and manners that it would seem unreasonable to suggest that their conditions have a single common cause. There are probably several different causes for their functional disorders, and the causes may vary from child to child. Many autistic children (up to seventy percent) also have a milder or more serious mental disability.

Even if the causes of autism remain largely unknown, we now know a great deal about its most important features. Autism is basically a lack of ability to understand social relations and interaction. A scientist has put it this way: “Autism is [among other things] not being able to imagine that oneself and one or several other persons are talking about the same thing. Therefore much of the social world is perceived as unpredictable and thereby frightening.” The American Academy of Science has said that autism “affects basic human behavior such as social interaction, the ability to express thoughts and feelings, imagination and the establishment of relationships with others.”

The specific diagnosis of “atypical autism” is made in cases where there is a lack of sufficiently established criteria to comply with the alternative, which is “infantile autism.” For example, the criterion of “stereotyped, repetitive behavior” might not be found, and therefore the diagnosis cannot be sufficiently proven.

There is agreement that autistic persons have serious difficulties with social interaction because they somehow lack the ability to understand what others say and do, and why. Autistic persons are not able to empathize with other people's thoughts and conceptions, or to appreciate the value of doing so. They therefore have a serious challenge in all social contexts: if two or more individuals are to participate equally in a school class, a game, or a conversation on the street, it is an important condition that they, at least then and there, have a common understanding of the situation in which they are participating. Should one of them lack such an understanding, he or she would be like the one blind person in a group of friends who are conversing about a sculpture. While the others discuss the colour and shape of the figure in front of them, the blind one will have to be content with talking about the impression he or she has gathered from touching it. How can the individual understand what the others are saying, and how can the others understand the individual? Both parties may as well be talking about two different sculptures.

Another way of putting it, when explaining autism to children, is asking them to imagine that a Canadian boy travelled in a time machine to a small Chinese village two hundred years ago. He won't understand what the Chinese are saying to one another or to him, and they won't have a clue what he is saying in return. This last part is important, because an autistic person has a twofold problem: he doesn't always understand what other people are saying or doing, and in addition, he himself is easily misunderstood because others don't often consider that he doesn't get what they say and do. Instead, the others may accuse him of being less intellectually endowed than they.

But autism has nothing to do with intellectual capability. Among autistic persons there are, just as among everyone else, geniuses and individuals with severe intellectual impairments. Furthermore, the diagnosis spans those who are so severely afflicted that they completely lack language and others who have only mild autistic features and might seem indistinguishable in their behaviour from those who function normally. Scientists therefore use the term the autism spectrum to suggest how great the differences are between the various forms and degrees of autism.

Many books and movies give the impression that autistic people surely have their problems, but that on the other hand they are idiot savants, “wise idiots,” all of them ostensibly equipped with rare and somehow inexplicable gifts in fields such as music, mathematics, or astronomy. This is a myth that contributes to the mystification of a condition that is mysterious enough as it is — although it is correct that many autistic persons become unusually passionate about a specific activity and cultivate specific talents.

When autism was first made an issue, many thought that children were afflicted because they had cold and distant mothers. The vast majority of scientists now view this as being completely wrong. Instead, they have tried to chart the basic features of autism and to create explanatory models of how the disorders develop.

In several books written by autistic persons it is more or less explicitly implied that autism can be “cured.” This is not true, and such suggestions are dangerous in that they lead parents to have unrealistic expectations when they should be concentrating on helping their children. These writers are right to say that
it is possible to learn and train oneself to live with one's autism in
a way that is less detrimental to one's life. An experienced scientist puts it this way: “Autism is a lifelong disorder which might lighten some with age, partly because certain mechanisms may start functioning after a long delay, and therefore are not permanently damaged.” For one thing, surveys show that preschool-aged children who appear severely autistic may show much milder symptoms in their youth and as adults. Still, not even such an “improvement” is within a realistic range for many autistic people, who have such grave difficulties that they will never live approximately normal lives. On the other hand, people with severe autism and developmental impairment might be able to establish contact with their surroundings, provided that they are given necessary help and encouragement.

ADHD
stands for Attention Deficit Hyperactivity Disorder. People with
ADHD
have problems with concentrating their attention on one issue over time, and they are full of bodily restlessness — what is often called “hyperactivity.” In addition,
ADHD
often causes anger and aggression, and can lead to thoughtless, impulsive actions.
ADHD
is, like autism, the result of neurological failure or damage, but is unrelated to intellectual capacity.

Only a very few who have a diagnosis within the autism spectrum also have an
ADHD
diagnosis. The way diagnostic criteria are formulated, an autism diagnosis would exclude
ADHD
, even though clinical practice shows that many autistic persons also have problems that are associated with
ADHD
. But despite the frequent overlapping of the two groups,
ADHD
is not considered a part of the autism spectrum.

Recent studies suggest that there are up to sixty people afflicted by autism per ten thousand. That means that there could be more than two hundred thousand autistic persons in Canada and over ten million worldwide.

The figures for
ADHD
patients are even higher. Five to six percent of the population is believed to be affected, that is to say, as many as two million Canadians. Or more precisely: two million unique, exceptional, and singular individuals.

For more information about autism and the autism spectrum:

AUTISM SOCIETY OF CANADA
(nationwide chapters)
Represents the largest collective voice of the autism community in Canada. The provincial and territorial autism societies and their member groups in each region provide direct support to people with
ASDS
(Autism Spectrum Disorders) and their families.

1670 Heron Road

Box 22017

Ottawa, Ontario
K1V 0c2

www.autismsocietycanada.ca

AUTISM TREATMENT SERVICES OF CANADA
A national affiliation of organizations that provide, or are actively planning to provide, treatment, educational, management, and consultative services to people with autism and related disorders across Canada.

404 – 94th Ave.
se

Calgary, Alberta
T2J 0e8

www.autism.ca

GENEVA CENTRE FOR AUTISM
Committed to providing resources for parents, professionals, and those who are affected by Autism Spectrum Disorders.

112 Merton Street

Toronto, Ontario
M4S 2z8

www.autism.net