Who is this child? Who is this student?
If I tell you that he has a 125 IQ, do you know him? How about if I add that he has a unique neuropsychological profile, with wide-ranging strengths and weaknesses? Do you sense that you know him when I say that he is socially awkward, preoccupied with airplanes and prone to one-sided conversations? How about when you hear that he doesn't like sunlight in his eyes, loves the smell of old books and enjoys pressing his thumbs hard into the tips of his other fingers? And will you recognize him when I inform you that he's a bit clumsy, speaks with an adult's vocabulary, is awfully disorganized and suffers colossal anxiety?
Like most of us, hearing this description will give you some sense of the child. You will begin to form an impression of him. And when you actually meet him in person, you probably will not be surprised by much of what you see and hear. When he starts to talk and recites in detail the weight and wingspan and flying range of military aircraft, you may nod to yourself. Just as you will when he avoids your eyes or sits rigidly and uncomfortably, as if your mere presence poses danger to him. His relative lack of social etiquette and stilted way of talking will confirm what you're already fairly sure of.
Yes, you are right. This is a boy with Asperger's syndrome. But just because you can rightly identify the child and the Asperger's, does that mean you really know him?
Think, for a moment, what it means to know a child who doesn't have Asperger's. Do we base our knowing that child on measures of intelligence, on IQ and achievement test scores? Probably not. How about on his eye gaze or hand-to-eye coordination? His proper use of pronouns or his ability to express his feelings? Instead of focusing on such finite and piecemeal data, our impressions will probably involve a much deeper, greater and richer gestalt, a virtual potpourri of experiences with that child. If someone asked that we describe that child in a word or two, we'd be hard-put. And yet we tend to rely on the term Asperger's to define and introduce who that other child is. For all its diagnostic and clinical relevance, in many ways the term "Asperger's" utterly fails to tell us who a particular child is. More worrisome, in no way can that term tell us who that child is, all that child can be or, for that important matter, who he himself wishes to become.
All this peril, of course, occurs equally should you discover that the child I've been describing with Asperger's is actually a girl.
My 30 years of clinical experience has taught me many undeniable truths about children with Asperger's:
- Children with Asperger's differ from every other child with or without Asperger's.
- They are much richer and more complex than has been realized.
- They have inner worlds, thoughts and feelings that defy what older research and conventional wisdom about autism has presumed and advised us.
- Their more stereotypical behaviors are not reliable indicators of who they are, of what they think, feel, experience, know and so forth.
- Their communications with people, including with themselves, mean more to them than is assumed.
- They often are more capable of, interested in and understanding of relationships than has been believed.
- Their neurological differences deny them critical opportunities for growth.
- What autism and clinical experts have tended to make of those neurological differences has further deprived these children of experiences that they the children crave and (developmentally) need,
- Concepts most germane to being human -- such as feelings, empathy and creativity -- hold relevance to these children, too.
- These children frequently smash through the glass ceilings that authoritative professionals have predicted for them (especially in the past).
- Any of us who ignores these truths deals a severe and cruel blow to these children's esteem, vitality, selfhood and happiness.
My dramatic words understate the reality. I sense, however, that I am saying nothing new to the parents and teachers who know such children. That Asperger's syndrome is a variant of autism is no longer news. That it is a neurological problem caused by biology, and not bad parenting, has been long and well established. And most readers, I suspect, agree fully with me that the child is a whole child, and not just a tally of discrete skills and scores. But this reality is easier headlined than seen, lived and heeded in the (parenting or teaching) moment, day after day after day.
Children with Asperger's enter the world with fewer resources to communicate, socially relate and deal with feelings. As if these burdens are not enough, they, in turn, lead to secondary deficits, in the way that carrying on with a bum knee can later cause hip and back problems. Being different, these children are then rejected, depriving them of the social experiences and practice that would ironically help them learn to do it (socially) better. At the end of the day, all these factors add up to an existence in which children with Asperger's are certain to go to bed each night having not gotten much, if any, of the validation, admiration, empathy and understanding that their neurotypical peers routinely enjoy. It is with this background and backdrop that children with Asperger's meet you, their parents and teachers.
None of us knows what the future will bring. Perhaps one day we will unravel the biological mysteries of autism and Asperger's. Perhaps our knowledge will lead to cure and prevention, who can say? Scientific miracles happen. Yet, for all the hopes and "who knows?" of science and medicine, there is one truth that we can be certain of even now: whatever technologies and discoveries come ahead for the child with Asperger's, none will ever threaten the basic truth and power that a good and meaningful relationship will hold for such children, most of all children who try their best and use their energies to cope in a world that can be too hard and too demanding, and that moves too fast.
I've yet to meet one child with Asperger's who does not equate empathy with understanding and, in turn, understanding with love. I've countless times seen the eyes of a child with Asperger's well up because I simply got what they meant, because I simply understood. What more need I say? What more need we know?
This piece is adapted from "Embracing Asperger's: A Primer for Parents and Professionals."