Ontario Adult Autism Research and Support Network - OAARSN

Ontario Adult Autism Research and Support Network

OAARSN offers information and communication tools to connect adults with Autism, family members, caregivers, friends, support workers, teachers, administrators and policymakers. We can all benefit from the opportunities for mutual support and encouragement and the sharing of knowledge and experience. Our efforts to promote positive approaches and best practices in supporting adults with Autism can help all who live and work on the front lines.

A Hope That Is Not Conditional
An abbreviated version of a speech to a Conference of Ontario Special Education Teachers in Toronto in 1975.

What is it like to be the parent of an autistic child? Clearly as I attempt to answer this I can only speak for my husband and myself. Many parents, however, would probably agree with the first point I would like to make: having an autistic child is most certainly an education. 

By this I do not mean that we all learn a great deal about Autism. Much has been written in the past fifteen years but it doesn’t take a lifetime of research to discover that no one really knows much about the condition. Few professionals even agree on what it is, or on who should be included in that diagnostic category. 

When I say it is an education I refer to an awakening process in the consciousness of the parent, as he or she begins to understand the implications of the diagnosis. The parents begin to re-examine their assumptions about what really matters and what does not in this uncertain life. If they are lucky, they will find themselves in agreement on these fundamental questions. 

Secondly, they become more aware, not just of their own assumptions, but of the assumptions of others – particularly the people who work with their child. Oddly, these assumptions are not primarily about the child, but about the parents.

We were told that our son Timmy was autistic shortly after his third birthday. He is now six. We knew at the time of the diagnosis that there was something amiss, but we were not prepared for the news that he was very “sick” and that he would never be normal. It takes a good year, I think, before it finally hits home that there is no cure for Autism, that no one knows what causes it, and that there is a lively debate about how best to treat it. As the irreversibility of the situation sinks in, the plight of the child completely engages the parents’ thoughts, in their waking moments and in their dreams. They are obsessed with the child and with the medical sentence that has been passed on him. At the same time they must help their other children to understand and adjust to this new dimension in the life of the family. Being the brother or sister of an autistic child is not the easiest role to play. I think it is amazing how happily and how well the siblings in many families are able to manage it.

While these adjustments are being made, one finds the most common remark from kindly neighbours, (and by and large neighbours are most kind), is something like: ”You must wonder why this happened to you?”  I can say in all honesty that the last thing we wonder is “Why us?” Autism, as far as we can make out, is a fluke. It could happen to anyone. The point is, however, that it did not happen to us. It happened to our son. That is the source of a parent’s anguish.

One mother, whose son is older than ours, spoke for many parents when she said that she wouldn’t mind the upheaval and the chaos of her life if her son were not so profoundly unhappy and distressed. When you live with an autistic child, there is no doubt in your mind as to who it happened to. The painful fact is that too many of the blessings are ours, and too many of the difficulties our son’s.

I cannot safely generalize in the matter of blessings. There are families for whom the prime concern is sheer survival; just getting from one day to the next.  Sometimes, through no one’s fault, the child’s behaviour is so disturbed that parent relief becomes the most important factor if the whole family is not to fall apart. But just as I cannot generalize about other families, I would like to think that professionals who work with autistic children might also see the pitfalls of generalizations.

In the beginning, parents naively set out with their child on the long treatment road. As they go from one research program to another, or from one treatment centre to another, a pattern emerges which they soon realize is going to repeat itself for as long as they seek help. It is something like this: the parents arrive with their autistic child at the time and place designated. They endeavour to appear as composed as possible while their child rearranges the furniture in the waiting room and makes strenuous efforts to escape by window, elevator shaft or door. Before long, a cheerful and efficient soul appears and tells the parents that he or she is going to take their child off for a short while to play. In the meantime they are ushered into a room where they at first believe they will be questioned about their child’s difficulties. What happens, in fact, is that they are confronted with a whole set of instant assumptions which the child psychiatrist, or whoever, has formed about them, though he or she has never set eyes on them before.

If, for example, the mother has any kind of training or skill, it is assumed that she must find having an autistic child unbearably frustrating, because he keeps her, and will continue to keep her, from “fulfilling” herself. If the father is engaged in academic work, it is assumed that he must resent and eventually reject a son who may never speak or make it through first grade. If there are siblings, it is assumed that they must suffer from their brother’s monopolization of their parents’ time, and that they will have serious problems of their own because of this.

So, the parents’ first task is to help the professionals to get to know them and the other members of their family as quickly as possible. In this way many of the assumptions are laid to rest and we can get on with helping the child. While this openness in communication is not too difficult to achieve, the frustrating thing is that it must be accomplished over and over, each time the child is discharged from one program and moved into another.

On the positive side, parents can make a lot of friends along the way. There are people who continue to show interest and concern for the child even after he leaves their care. But for many parents who are already under considerable strain, the experience of being constantly on trial is not very pleasant.

The one assumption that we have felt helpless to dispel, and the most pernicious, is that which we first met when Timmy was initially assessed. It is the judgment that if your child is not going to “make it”; if he cannot achieve much academically or hold a job or become socially “integrated”, then that pretty well wraps things up. All that remains is to find parent relief, preferably on a permanent basis. When our son was three and a half we were strongly advised to put him in an institution as soon as possible. It was predicted that if we tried to keep him at home our other children would deteriorate, and we would likely end up hating him. During the next two years we had four meetings with this doctor and we got the same message each time. “Timmy is a lemon. Put him away and forget about him. Get on with your life.”

Perhaps a doctor cannot be expected to know what people’s lives are all about. This being so, more of them might refrain from such deadly advice. Had we put Timmy in an institution at the age of three, I have no doubt that by now I would have joined him as another patient. The fact is, of course, that you can’t judge the significance of a life solely in reference to a person’s medical history. I think most of us would agree that life’s possibilities are more encompassing than that.

A final point, in terms of parental education, has to do with expectations around particular programs. It seems that most people working with autistic children take for granted that the idea uppermost in the minds of the parents is hope in outcomes. They assume that the big question for the parents is: “Do they have some technique in this place that is really going to help my child change; that might even cure him?”

Two years ago a poem called “The Autistic Child” was circulated at a Conference for Exceptional Children here in Toronto.  The child speaks first to himself, then to the therapist, and finally to his parents. These are the remarks which he addresses to the therapist:

Can you remember who I was? Can you still feel it? 
Can you find my pain? Can you heal it?
Then lay your hands upon me now
And cast this darkness from my soul
You alone can light my way
You alone can make me whole.

Now I know there are some very competent therapists in this city, but let’s be realistic. That we hope for our son is one thing, but it is not the kind of hope that rests on any particular treatment approach, however enlightened. It is a hope that is not conditional.

For many parents, their greatest concern when putting their child into a program is not hope, but trust. The question is not so much, “Will they really help him?” Rather it is, “What will be required of him?” The parents are not saying, in effect, we’ll try anything once. Although they are not likely to put it into words, they are trusting that the child’s life will not be made any more anxious and bewildering than it already is.

This uneasiness that the parents experience has little to do with the professionals as persons. I would not like to leave the impression that we feel there are a lot of quacks in the business. We have been very fortunate in the three years since Tim was diagnosed. The therapists, psychologists and teachers who have worked with him have been genuinely caring, concerned, and responsible human beings. The problem is simply that, with regard to Autism, we do not know enough. We have to keep reminding ourselves that a very important aspect of finitude is that we only have one perspective on something. There is no God’s-eye view, so errors are bound up in the very nature of human knowledge. And yet, working as we do always on the edge of uncertainty, we are incredibly quick to judge and to manipulate, and incredibly slow to accept and to enjoy.

This does not mean that we should not devise programs to help these children. They need all the help they can get. But given the present state of things, there are many people of intelligence and goodwill whose enthusiasm tends, at times, to get ahead of the knowledge of what they are treating. The child, unable to respond in the way he is expected to respond, is the loser.

Here, one can see, it is not simply educational having an autistic child, it is extremely challenging. On one level it is a challenge for the parent, on an ongoing basis, as it is for the teacher or therapist a few hours a day, to find ways to help these children to learn and grow. But by far the greater challenge for the parent, and the real strain of raising an autistic child, is ensuring that the expectations and priorities of the society in which we live do not either tempt or push the parents into denying their own instinctive sense of what really matters with regard to him.

Autistic children seem to have remarkably little awareness of themselves as persons, and their world appears to be either terribly confused or just plain empty. Now the implications of these observations are likely, I think, to suggest themselves first to parents, who are closest to the child. They are not, at any rate, given much consideration by one of the most influential groups currently doing research with autistic children.

In a major work published in the Journal of Applied Behavior Analysis in the spring of 1973, Ivor Lovaas and his colleagues present some measure of the changes that they observed in the behaviour of 20 autistic children as a result of intensive and prolonged therapy. The experimental rigour and emphasis on reliable measurement in the study are most impressive, and Lovaas is able to show that both mute and echolalic children, all of whom came to the study with a very poor prognosis, did improve with behaviour therapy, though one child learned in an hour what another learned in a year. Whether the improvement can be sustained over time, without continuous therapy, is another question.

In discussing the study, Lovaas writes under the heading “Major Strengths”: Behavior therapy programs for autistic children help. That is their major asset. Then under “Major Weaknesses” he goes on: “The most significant disappointment was the failure to isolate a pivotal response.  … This means that in the beginning we searched for one behavior which, when altered, would produce a profound personality change. We had once hoped, for example, that when a child was taught his name … that his awareness of himself (or some such thing) would emerge. It did not. Similarly, the child who learned to fixate visually on his therapist’s face did not suddenly discover people.”

Under what conditions do we become aware of ourselves as persons? Surely these are essentially social. That is to say, if we are going to know anything about ourselves we need others, not to condition our behaviour, but to relate to us.  It seems a necessary part of the integration of the self to be recognized by other persons, not as an object to be manipulated, but as a human being. For each of us, our world is the structure of relationships within which we exist.

Given the nature of Autism, it is precisely in the area of relationships that I believe we must eventually find the key. If you have ever worked with autistic children you will know that Autism is a condition involving multiple handicaps, and one of the biggest, in many cases, is constant and extreme anxiety. We have found this anxiety in our son more puzzling and disturbing than any other of his symptoms. As far as we know, he has never had any kind of traumatic experience, unless one counts being born. He has never been hospitalized, sent away, or left with strangers. He knows that he is loved and accepted by all the members of his family. Why then is he constantly anxious?

The closest I can come to a guess is in terms of Timmy’s world. If it is in the world that we seek and find ourselves, and not in isolation, then if our world makes absolutely no sense – if it is a jumble of particulars, none of which connect – our very existence will be threatened. That, I would think, would be ample cause for anxiety in anyone. I hazard that something like this may be causing it in autistic children.

This means that my prime task, as a parent, is to help Timmy enter into the kind of relationships that could give significance to his world; that could give him a secure centre upon which I can help teachers and others to build. We actually know very little about Tim’s world, even though he lives solidly in our midst. But we do know that it is vital that we help him to understand that he matters, that he is precious to us, and that all his autistic symptoms do not detract from this. The more his awareness of himself and his worth increases, the more likely it is, I think, that we will all be able to help him to grow. As parents, our first priority is to love and support him. Our second is to teach him to brush his teeth, tie his shoes, and put red on red. And any faltering in these secondary areas must never be allowed to signify to him that he is diminished in our eyes. Nor can we allow others to so diminish him.

Finally, I would end these remarks with the suggestion that being the parent of an autistic child is most of all an opportunity. One day a couple of years ago, I found among my grandfather’s books a short and rather quaint little tract by William James, the American psychologist and philosopher. It was written in 1899 and published under the title On Some of Life’s Ideals.  At one point James is discussing the blindness in human beings to the significance of other people’s lives. He suggests that we cannot simply scrutinize another person for a period of time and then make a judgment about the quality or significance of his life. He writes:

“The observer (poor soul with all his documents!) is all abroad. For to look at the man is but to court deception. It is to miss the true realism, which is … that of the poets: to find out where joy resides … For to miss the joy, (and here James is quoting Robert Louis Stevenson), is to miss all. In the joy of the actors lies the sense of any action. That is the explanation, that the excuse.”

We have one life. If, in our frantic efforts to condition our child and break his obsessions and compulsions, we fail to respect and love and enjoy him, what on earth is the point? “In the joy of the actors lies the sense of any action.” Timmy’s joy and ours is in the relationship between us. And it is that relationship, I believe, that makes the difference between a forlorn confused child and a happy confused child. That is the explanation and that the excuse for our priorities.

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