It is an honor to be asked by the AANE, an organization that has always been close to my heart, to give the keynote address this morning. While I have the privilege of sitting on the Boards of several wonderful organizations, none in my opinion, can rival the incredible growth and expansion of services of the AANE. It is hard to believe that it was just in 1995 that a group of about 75 parents and professionals met in the auditorium of a middle school in Newton, where I presented the first Keynote Address. It is amazing how little was generally known and available about Asperger’s Syndrome at that time.
Today, the early to mid 1990’s seems like a different era—and it was. The Asperger’s diagnosis had received some legitimacy in DSM IV, which had just been published in 1994, but not much pizzazz. Parents, schools, and, at last professionals, were finally beginning to ask, “What is it?” This was about 4 years before Tony Atwood’s first book was published. There was virtually no research or academic literature, aside from a very few scattered articles and papers. I did a computer search around that time, and, if I remember correctly, about 9 or 10 hits came up; today, it is pages and pages. This morning, I am not going to be talking about microscopic molecular or cellular deficits. Instead, this talk is largely at the level of anecdote and history.
That fledgling group that came to that first keynote address slowly coalesced during the next year. We shared a common sense of urgency to help our children (adults with AS were barely on our radar screen at that time.) After that first keynote address, we set up small organization, AANE, with a small Board of Directors, a page or two of by-laws, and one or two committees. And so we began.
Let me give you a few examples of the mystery around the diagnosis in the mid nineties. A set of parents formally requested their HMO to pay for me do a diagnostic assessment of their son whom they suspected had Asperger’s.* The parents were informed that the HMO already had doctors within their HMO who could do the evaluation. In fact they gave the parents the name of a psychiatrist to call. A day or two later I got a call from the doctor. He said that he was happy to do the evaluation if I could just tell him what Asperger’s was.
*Philosophically, the author strongly opposes reducing people to their medical labels, e.g., a “schizophrenic,” an “Asperger’s,” etc. In this paper because of space and editing considerations, please know that when Asperger’s is used as an adjective, or in a reductionistic fashion, it is not meant disrespectfully or without awareness of the linguistic h.
In late 1995, I was in Texas delivering a paper on children’s artwork at the American Academy of Child and Adolescent’s annual meetings. Midway through my talk, I said “the next three slides are drawings done by 3 of my patients who have Asperger’s Disorder. A murmur went through the auditorium. On a show of hands I discovered that out of about 300 child psychiatrists in the audience, approximately 80% admitted they didn’t know what it was. This was about 2 years after the publication of DSM IV, and these were child psychiatrists. Asperger’s was barely understood by even the medical professionals in the mid 1990’s.
The growth of the AANE in the past dozen years has been absolutely breathtaking. The changes in just the last 18 months have been incredible. And the proliferation of what the world now knows about Asperger’s—the hundreds upon hundreds of research publications, media articles, workshops, manuals, books, memoirs, experts—was unthinkable the first time we gathered in that cramped middle school auditorium 13 years ago.
But the ground floor of the AANE is not where I want to begin my comments this morning. In fact, if you will indulge me, I want to begin in the sub-basement of my experiences with AS almost 20 years before the AANE was born. I want to try to capture for you what is was like for me as a young physician, and an even newer psychiatrist, to slowly become entwined, not just in the Asperger’s diagnosis, but in the Asperger’s experience. I am a little bemused by the fact that since my first patient with AS in 1978, I have now been involved with close to 3,300 individuals who have had Asperger’s or related disorders from age 2 1/2 to 87 years old.
For someone who is now meandering into the vestibule of my own old age, it is, I think, meaningful to pass on to you while I still can, how I had to try, and continue to try, to piece together an understanding of this strange, lonely, and counter-intuitive syndrome. This is a story of serendipity on the one hand, but also of a temperamental pull to a group of people who were disregarded and invisible, and who for decades were trapped in a medical-diagnostic waste-land.
I have to tell you that as a Family Physician (which I was for several years after I first finished my medical training), and then as a Developmental Pediatrician at Boston Children’s Hospital, and even when I became a psychiatrist in my mid thirties, I had absolutely no interest in severe Autism. I suppose Autism frightened me. It seemed so catastrophic, the kids so unreachable, and the impairments so intractable. I do not still feel that way today about severe Autism, but you will see why I am still drawn to working with individuals with Asperger’s and related problems.
When I was a young child psychiatrist, what really interested me was the way people made connections to each other. I was especially interested in children who, for many reasons, were difficult to connect to in psychotherapy. When I was Chief Resident, I asked the department head to assign me child patients who would not sit still for, or tolerate, conventional play therapy. I have always been interested in how one started and maintained a relationship. In a very serious way, it always seemed to me that the central core of healing in psychiatry was a trusting, mutually respectful relationship between two people. Whatever the theoretical dogma, be it Freudian, psychodynamic, insight-oriented therapy, psychoanalysis, even psychopharmacology, whatever the formal system or doctrine of therapy, I always felt that the relationship, and what transpired within it, was a crucial part of the healing. So for me, the issue was how to create a relationship with kids who were so traumatized, abused, emotionally injured or even psychotic, that they could not interact well enough to take part in therapeutic change. I never dreamed I would end up seeing children on the autistic spectrum.
In 1978, when I was about to finish my 4th year of psychiatry training, I was assigned a 6-year-old boy in our hospital clinic who had just moved to Boston. For confidentiality, I will change some of the names and details of this (and other patients I refer to in this talk). I will call him Teddy. While today, his early history will sound very familiar to all of you, in 1978, in my downtown Harvard teaching hospital, he was said to have childhood schizophrenia, even though to me, he did not seem to fit the criteria. My hospital clinic thought of him as a “UPC,” a Unique Psychiatric Curiosity.
Teddy was born after an unremarkable pregnancy, and his first year of life was noteworthy for some colic, hypersensitivity to sounds, and the ability to play for long periods of time in his playpen and crib by himself. His developmental milestones were not remarkable. If anything, he was verbally precocious, but by about 18 months of age he began to run away from baby groups, would attack other children, refuse to listen, and was very demanding. Other parents often did not want their children to be around him. At age 3, his pediatrician referred him to a child psychiatrist because he seemed to be so taken by locomotives, steam engines, and diesels. He would insist on going to railroad crossings to watch them pass. On his psychiatric evaluation, he was found to have an extremely high IQ, so high as to be off the scale.
He had been referred to several local child psychiatrists, but either Teddy shrieked and ran out of their offices, or he refused to enter at all. About 6-8 weeks before I first saw him, he began to insist that he was a Penguin. He refused to answer to his name, and he became furious when anyone called him Teddy. He was now walking or waddling like a penguin, and was angry with his mother for not having hatched him out to look more like a penguin. My colleagues and our clinic secretaries began to refer to him as the Penguin Boy.
Just before his first session, I wondered how to make contact with him. I went to a toy store and bought a cheerful, fuzzy, stuffed penguin doll, a box of animal crackers, and a bag of little rubber fish. I set them on a small play table inside the door of my office, and waited with some trepidation for Teddy to appear. His mother brought him to my door, and then retreated back to the waiting room. He stood before me as a tall, thin, blond child. He walked stiffly and made no eye contact. For the next several sessions, he continued to stay just outside my door; I stayed on one side of the open door in my office, and he insisted on being out on the other side of the door, in the hallway of this busy hospital clinic.
He totally ignored the penguin doll. I later realized that it was much too cuddly and too warm for him. But he did ask to see the little fish. He named and told me something about each and every fish as if he were the curator at the Boston Aquarium. It was my first experience with this prodigious cataloging capacity. I said, “You seem to know a lot about fish,” and he said, “Yes, that is quite correct.” Again, my first experience with formal, aloof, and pedantic prosody. He was very stiff, very bookish, and very, very precocious. At the end of the hour, he darted into my office and with great glee and Darwinian delight, he bit the head from each animal cracker, and carefully and sadistically spit them out. As he was leaving, I asked him if he had any pet fish at home. He took a small scalloped seashell from his pocket and showed it to me, “this is a Warbat, it pecks eyes out, it goes caw-caw.” He then turned on his heel and left. Thus began my translocation as a therapist onto the lonely, harsh, cold Arctic coast that over the years I have come to inhabit with many similarly remote, detached Asperger’s patients.
I am sure all of you have arrived at Teddy’s diagnosis, but in 1978 the term PDD did not yet exist, let alone Asperger’s Disorder. There was no such thing in America as an Autistic Spectrum. We were still using DSM II, which had a relatively small number of categories, none of which seemed to apply to Teddy. The main issue for me at this point was not so much diagnostic, but rather how to make a trusting therapeutic relationship. How do you make a relationship with a Penguin?
Parenthetically, Teddy and I were in therapy together for 7 years, much of it 2 or 3 times/week. In those days, insurance was incredibly generous. I learned more about Asperger’s from him than from any other single source of information since. I learned by trial and error, by watching and thinking, and trying out strategies. I gradually over-came my fear of his strangeness, and came to grips with my vain excitement about what an “Interesting Case” he was. I have to remind you that this was literally decades before any notions of occupational therapy, physical therapy, pragmatic speech therapy, and social skills training that we have now evolved for these children.
Over the course of the next few years, I developed an hour-long, academic presentation for medical students and staff. I included many of Teddy’s drawings and the strategies that worked and didn’t work. I began to give this talk at Grand Rounds and at scattered educational gatherings in the Boston area. Gradually during the early 80’s, my friends and colleagues began referring to me a few similarly confusing and difficult-to-reach kids. From my readings and supervision, I knew these children had echoes of autistic behavior, But they were so bright and articulate—certainly nothing like Kanner’s Syndrome. After DSM III was published in 1980, I began to label them as PDD-NOS, because there was nothing else to call them.
Then in 1983, while browsing in the medical school library, I came across Dr. Lorna Wing’s paper, which had been published in a British journal in 1981, but had not really been noticed here in the U.S. I cannot describe what an epiphany finding this article was for me, probably similar to what Dr. Wing felt when she stumbled across Hans Asperger’s lost paper. In the paper in front of me, she was describing and naming Asperger’s Syndrome. At last, I had a clear name and a formulation for the growing trickle of kids I was beginning to collect, and this was extraordinarily comforting and conceptually orienting. It was like turning a grip on a telephoto lens and watching the scenery slowly come into focus.
Let me to return for a minute to the early part of my therapy with Teddy. I quickly realized that Teddy had a whole elaborate fantasy world centered around the Warbat creatures that he obsessively played with constantly. One of the first major, technical decisions I needed to make in the therapy, was what stance to take regarding these perseverations. I was advised by my supervisor to ignore the Warbat world, and work on here and now, reality issues, but I felt that I could not do this without driving Teddy out of the room. I needed to find a comfortable relationship that allowed me some semblance of empathic connection. It had always been clear to me that a therapist’s empathy has to center in the reality of the patient, not his own. Yet I had no idea that Teddy’s reality and my reality could be so fundamentally different, and this realization was one of my first defining moments in working with Asperger’s Syndrome. So I decided to enter the Warbat World at Teddy’s pace, respectfully, like a collector of folk songs in Appalachia, like Alan Lomax. Teddy asked me to scribe all the species of Warbats for him on a giant piece of easel paper. There were at least 80 species of Warbats. He knew each one’s characteristics, and they were stable over time. I was trying to understand and document the Warbat World at the same time that was I trying to allow him to see that I was a safe person.
It seemed to me in those days as I got to know this world, that it was a defensive displacement from our real world. It was a world in which he could make the rules, set out the players, define the emotions. It was understandable to him in a way that he could not comprehend our reality, which for him was much too fluid and spontaneous and ever-changing. Even though it was a scary, terrible world, he called the shots. It took many months for Teddy to allow me to slowly and respectfully enter this world and introduce healthier subspecies who solved problems and got along with each other in more human and adaptive ways. Thus our therapy gradually began.
From this relationship, came a guiding principle in terms of beginning psychotherapy with individuals with Asperger’s: Start with where the child is and gradually broaden the margins of his narrowed interests. So in the next several years, with the ever-larger stream of Asperger’s kids who wandered into my office with their bags of plastic dinosaurs, their Thomas the Tanks, my little Weather Announcers, Guinness Book of Records keepers, the collectors of paper clips and cigarette butts, the Historians of the Titanic, the Star Trekkies, the map-makers and herpetologists, I always started with where they were, and was quick to be enthusiastic and interested and excited by what they were interested in. I wanted to know the details, even if by neuro-typical standards, they could be boring and repetitious.
I remember one little 6 year old who came to see me. He brought in a large hour glass, which he kept turning over to see the sand sift down. Like all the Asperger’s kids, he wanted nothing to do with my doll house or action figures. I did happen to have a small 3 minute sand-glass egg timer. We sat next to each other doing the same thing in parallel. The next week, I purchased a medium size hour glass. So at this point, we had his large one, my small egg timer glass, and now a middle size glass. You know what? We had a family of hour glasses! A Daddy, Mommy and a Baby, and we could begin an admittedly bizarre, but at least anthropomorphic play about an Hour Glass Family. This slowly became the start of his therapy. He is a grown-up now, but I still see him for follow-up visits and medication management.
We call these maneuvers “bridging techniques.” Consequently, when new kids came to see me, and, for example perseverated on drawing maps, I always managed to draw my town on the far side of the paper, and eventually draw in a connecting highway. It took a while, but from playing in parallel, we over time connected our towns and made countries and continents. We eventually had a metaphor to begin to work out how people run a country, how people get along with each other. I had what today the finance people call “leverage.”
When kids brought in their Thomas the Tank trains and track, I always found a way to build my tracks to bridge over theirs, or even, God forbid, actually connected the tracks so our trains could go on the same track, though they sometimes crashed. In fact, not all of these bridging techniques worked, and some did crash and burn. Not every kid responded.
The second guiding principle was: Once we had found a way to bridge, the hour had to be fun. What good is it to come see some guy every week if it’s not fun? The very best bridge was some episode of intensely shared humor, a really funny joke where both the patient and I really laughed together hard. So before we even got to the therapeutic interventions per se, I had to let the child know I liked him or her. The truth is that in those days, despite the perseverations, these children were so unique and special, that they were always fascinating for me to spend time with and try to understand.
Let me say now a word about their parents. Many of these parents had been from pillar to post with their children. They had been given all kinds of diagnoses and advice. They were urged to set firmer limits, to take all the toy trains out of the house, to forcefully take control of their children. They were often criticized by teachers, in-laws, friends, and psychotherapists—by the very people who should know better, whom one would expect to be supportive and validating of competence—and they were accused of spoiling, over-protecting, and “enabling” their children.
Still, I worried about telling them their child had something related to Autism. I was frightened about conveying a diagnosis that seemed to me would create such pain and panic. In fact, many of the mothers did cry when I explained my understanding of their child’s disorder, but to my surprise, these were tears of relief. They were grateful to at last have a name and to have a formulation, and to have found someone who had seen other kids with the same problems. In those days, the parents were often as isolated with their troubles as was their child. To discover they were not to blame, were not bad parents, did not have to feel guilty, but instead could understand this as a genetic issue with a biologic basis, was truly liberating.
I have to say that despite this initial reaction, parents still experienced a slow, mournful awareness of the enduring nature of the disability. This struggle with on-going grief is often painfully evoked again and again during developmental turning points: the aching obstacles interspersed along the life cycle of the child, such as summer camp, transitioning to middle school, going off to college, getting and keeping a job. Later, I want to come back in greater depth to the notion of grief and parents of Asperger’s children. I think it’s a subject we don’t talk enough about in these conferences.
I’ve alluded to the solitary posture of the kids with AS and to the isolation of their parents, but I need to mention that in the 80’s, and actually for several years beyond, being one of the few, maybe even the only, child psychiatrist interested in Asperger’s anywhere near here, was itself personally and professionally isolating and lonely. In Boston, in those days clinicians working with autism were involved almost entirely with the severe PDD and with ABA type treatments. General psychiatrists and pediatricians would listen politely when I gave a lecture about Asperger’s, but many of them just did not believe in it. Other child psychiatrists would leave my talks and say, “That Rosenn has an interesting little hobby, but there’s no future in it.” A principal of a school was quoted as saying, “I’ll follow his classroom recommendations, when I’m allowed to write prescriptions for medications.” A parent once told me one of my colleagues warned her, “If you want to get a diagnosis of Asperger’s, just take any kid to see Dan Rosenn.” Fortunately for my own self esteem and confidence, I was by then Chief of a Division of Child Psychiatry in a Harvard teaching hospital, and deeply involved in general psychiatry, seeing and consulting on a huge variety of other kinds of cases.
But I always felt myself drawn back to the children and adolescents with Asperger’s. They looked at the world so differently. They made me re-examine what perspective-taking, imagination and play was all about. For example, people said that kids with autistic spectrum disorders had no empathy or feelings, and clearly this was wrong. They had huge reservoirs of intense feelings. In fact, they were often excruciatingly emotional, especially around certain issues, like fairness and justice. They had lots of their own feelings—it was just that many did not seem interested in other people’s feelings. People said they were not aware of subtleties of verbal expression, but I noticed my patients were incredibly sensitive to small shifts in tones of voice—they just read them entirely differently from the way I would, or the way they were intended. A little annoyance by the teacher meant to the Asperger’s student that she hated him. They were not little robots or even for the most part Little Rainmen. Unlike the myth, many of them did tell lies—they just lied poorly and transparently. Sometimes they didn’t mean to hurt other people, and were unintentionally rude and obnoxious. But at other times they did intend to lash out quite fiercely although unreasonably, because of trivial events that usually would not have bothered other people.
Then there was the myth of empathy. At times they could be extremely caring and affectionate. They especially loved their mothers, with a deep abiding love that could be attached only to someone who constantly stood ready to help them interact with a world they often didn’t understand, or distorted or feared. Although they could clearly mistreat their mothers, even be quite abusive at times, there was no doubt they were often quite empathetic to mothers, even to their subtle feelings. Once I came across one of my seven year old Asperger’s patients, walking together with his little five year old sister in a park in Wellesley. Their mother had run back to her nearby car to get something, and they were momentarily by themselves. A big old friendly black dog ambled up to the two kids and begin sniffing them. They were both immediately terrified of the dog, and both began crying and screaming. Their mother and I began running from opposite directions towards them. But before we could get there, my patient did something I will never forget. He held his sister’s hand, and put her behind him, as the dog circled them, sniffing and licking. He was absolutely terrified, but he always re-positioned himself between the dog and his sister, all the while sobbing and trying to shoo the dog away. To me, this was an incredibly moving and heroic piece of empathy in an Asperger’s child. He was literally willing to sacrifice himself to the dog to protect his sister. I discovered that people with Asperger’s do have empathy, it is just erratic. It is like Swiss cheese: it has big holes in it. You, and they, cannot rely on it being there consistently.
Of course this is just one of the many the inconsistencies and contradictions I was trying to piece out about this disability. It certainly confuses teachers, who notice that one day a child can do something that he cannot do the next. It can make them feel he is being manipulative, and they can get very punitive about it. But this unpredictability is especially confusing and scary to the Asperger’s individual of any age, who often is not sure how, at any one point in time, his efforts at social approach will be received. Often he or she can never quite be sure whether he will be laughed at, ignored, or accepted.
In those days (the late 80’s and early 90’s) the schools, especially the Kindergartens and elementary schools, were very interested in Asperger’s, much more than were the medical or psychological establishments. While many OTs and younger teachers intuitively got it, it was often harder in the 1980’s to convince the older teachers to let my students chew gum, or suck on candies during class. We cut inch-long pieces of clear rubber tubing to put on the end of pencils so the kids could chew. It was harder to convince teachers that letting a kid slump across his desk during math class, or doodle while she was talking, or letting him play with a small nerf ball during a lecture, all were soothing and enhanced focus. It was just another part of the counter-intuitive puzzle that is Asperger’s.
When I introduced the notion to schools or care-takers that Asperger’s was a mild form of autism, I had to quickly say that the intensity of accommodations and the level of misery and pain caused by this disorder were not at all mild. Even though I was not comfortable declining or conjugating degrees of suffering, it was clear from talking to the parents and the kids themselves that this was a wretched, often excruciating disorder, and the children’s very strengths—their intelligence and high levels of analytical functioning—gradually allowed them to experience and grow aware of their own differentness, sorrow, and estrangement.
In these early years, many staff thought if you could just make the kids look at you, then you were halfway to a cure. So there was a tremendous push to get kids to look in the eyes of speakers. Adults would even take hold of the lower jaws of the Asperger’s kids and pull them around so their eyes were facing theirs. By this time I had several bright articulate middle-schoolers, who could say how much they absolutely hated these interventions. Many of the kids told me that it hurt physically to make direct eye contact. It was like running finger-nails down a blackboard. So we began to work with kids on just looking at eyebrows, or at least turning their bodies in the direction of the listener. Eye contact was just a small piece of a complicated face-to-face ballet that involved subtle shifts in gaze patterns.
The kids themselves were eloquently telling me this was a much bigger problem than just mutual regard. Once, early in my career, I was talking with a really bright boy with Asperger’s, then a ninth grader (who, by the way, has since graduated from MIT). We were really talking about his chronic social anxiety. He said to me, “Dr. Rosenn, you’d be anxious too if you were plunked down in Tokyo and you didn’t speak any Japanese.” I said, “Yeah, that’s true, But you go to Newton North. They speak English there.” He replied, “No. No. You guys [meaning us neurotypicals] speak a different language. It’s the language of the eyes and face. [He pointed to the upper part of his face and eyes.] You do things up here that I just don’t get.” Of course he was talking about the whole gamut of Asperger’s difficulties in reading subtle social expressions: context, fine muscle movements, the second-to-second changing landscape of tiny smile and frown lines that cross our faces without us even thinking about it. The children who had the skills to talk to me were often incredibly articulate about their issues. They deeply influenced me. I found myself paraphrasing them in my lectures.
Around this time, I happened to do an observation together with the principal of a middle school where I had a 6th grade patient I’ll call Marion. The school felt she was doing well in the classroom, and therefore was balking at seeing her as having a significant problem. This is still a major issue for many schools. If, academically, a child is doing even adequately in the classroom, then accommodations can be very grudgingly granted, or even entirely withheld.
We were watching Marion in the cafeteria, where she sat a table with 8 other girls. The Principal pointed out parenthetically that another 6th grade girl at the next table was just starting school today. She just moved from Russia and didn’t speak a word of English. I said, “Great, let’s compare how well these two girls do.”
Marion sat virtually alone at her table with her back to the girl next to her. She looked sullen or vacant. One or two kids said a few words to her, but the conversation went nowhere. Another got up to get some milk and happened to accidentally bump Marion’s chair. Marion quickly became angry and spoke harshly to her. She was pretty much eating by herself despite the 7 other girls, and she looked miserable. At the next table, the little Russian girl was having the opposite experience. Her face was incredibly animated. She pointed to glass and said the word for it in Russian, and smiled. The kids immediately were taken by her. They all laughed and giggled and gesticulated, and soon were communicating nonverbally in a virtual game of social charades, and having a wonderful time.
I explained to the Principal that Marion had a really serious disability, a disability far more devastating than a typical classroom learning disability like dyslexia. Perhaps this year, she could do academic work, but she had a significant language-based disorder. She spoke English words, but couldn’t really communicate. She could read phrases in books, but could not read people. The Russian girl, who spoke no English, communicated with a universal language we neurotypicals all have available to us: the language of the face, the smile, the gesture—a language of eagerness, and warmth. Unless we found a way to help Marion with her disability, her classroom skills (even if they remained adequate, which I doubted) would ultimately never prepare her for the world. The principal believed me, and we were able to get a decent IEP.
Before we had the term and concept of Asperger’s, many of the kids in those days literally believed they belonged to a different species. Huge numbers were drawn to Mr. Spock. They felt literally as if they came from another world, and belonged in a different universe. They knew they did not belong here. No one could explain to them, in any comprehensible way, how at the same time they were different, but how they were still like us, too. It took us many years to work out the semantic relationship between defective and just different. In the meantime, at recess they wandered around the edges of the playground by themselves. They had no friends. They constantly annoyed or embarrassed their siblings. Their fathers were often stymied, since they wouldn’t play baseball or any other team sport. In my office, many of them sometimes cried bitterly that no one liked them, that they were stupid. Some believed that “something must have happened to them” in their mother’s stomach. They didn’t deserve to be alive. The paradox for me as a physician was that to obtain services and recognition medically and by funding agencies, I need to formulate the problem persuasively as pathological entity. However, at the same time, I was struggling to find a language and a method to present Asperger’s Syndrome to the kids as a differentness, not as defect—as a matter of strengths and weaknesses, not as being broken.
In the 1980’s I began to sort through techniques in my office that would be helpful to kids with Asperger’s. All of this will seem old hat to you, and is pretty obvious from today’s perspective. It is hard to describe how in the dark we were. In other parts of the country or the world there were probably scattered o people doing this, too. I simply didn’t know of them. It was trial and error, and the kids helped by telling me what was stupid or what worked. They were my supervisors. I knew that just playing chess or Uno was not enough, but lecturing or giving advice about socializing was entirely useless. And conventional play therapy, where so-called inner conflicts were uncovered and worked out in pretend play with dolls, was also ineffective.
One thing that helped was putting the feelings that the children were groping to understand into concrete diagrams, drawings, and cartoons. It wasn’t so much strong feelings like anger or pleasure that they didn’t understand, but gradations of feelings. I was constantly making thermometers and yardsticks of mild feelings like disappointment, fairness, longing, spite. Many of these rulers or thermometers we shared with the parents and teachers, since the kids often overestimated how mad or disappointed a parent was, and they worried a lot about it. So on the Anger yardstick, which was really a strip of cardboard with a hand-drawn 1 to 7 point scale, had #1 impatience, #2 annoyance, and so forth, through minor irritation to exasperation to frustration to anger to #6) major pissed off, all the way to #7 “Watch out, Baby.” We would teach kids to ask their mother or teacher where they were on the yardstick. “Mom, are you really mad at me now,” and the mother could say, no I’m only a number 2, I’m a little annoyed, but you still have to pick up your pajamas.”
Everything was concrete and visual. If a child described a time he was teased on the school bus, we would drag in some chairs from the waiting room and make a pretend row of bus seats. I would be the bad kid, and with my patient’s instructions, we would play out what happened. And then we would switch roles, and try to come up with a strategy to try out, and practice role play in my office. Teenagers and I wrote scripts for short phone conversations with classmates whom they were afraid to call, since they did not know what to say. Long before I met Carol Gray, we would process confusing things that happened in school by breaking things down into parts and drawing a comic strip. Then we would try to re-draw it so that the comic strip sequence came out with a better solution.
If the child had a few major worries that she couldn’t get out of her mind, we could write them on a piece of paper (me scribing of course) which I would put in an envelope and seal, then lock it up in my desk drawer and say, “I will take care of these worries this week, and you can just leave them here with me, and they can’t get out because we’ve locked them in.” Sometimes this worked much better than Prozac, which, by the way came on the market around 1987.
Eventually, I left academia and opened a private office in my home town. I was careful to choose an office in a kind of Sesame Street neighborhood with a toy store, a Brigham’s, a hardware store, and a coffee shop all within one block, plus a small park with sliding boards, swings, and regular neighborhood kids right around the corner. Much of the therapy was done out of my office. If we went for ice cream, there was always an assignment: “Let’s see how good the waitress is at social skills. Lets see if she says hello, or looks at us, or says thanks you, etc.” We had checklists and lots of positive re-inforcers.
The perseverations were always sticky things to deal with. Therapy involves change, and change is toxic to Asperger’s. How do you stop a child who is going on and on about something for 20 minutes, and anything that you say—like “Time Out,” or lets talk about something else”—just does not work? I learned by accident that a starkly discrepant event can act like a fracture point to a perseveration. So if you “accidentally” knock over your waste basket, or your pen just happens to roll off the desk under a chair, or the air conditioner knob gets stuck, you can break in and say, “I really need your help finding my pen or cleaning up my waste basket. Can you help me fix the air conditioner?” So you can actually temporarily snap the perseveration by using a major distraction.
I do not want to make this sound like I was brilliant strategist. Actually about half of what I tried really worked. Sometimes the kids just laughed at me or balked, and occasionally I really screwed up. One of my major early fiascos involved my efforts to devise an intervention for a kid who spoke in such a loud voice, that he was driving his family and his classroom up the wall.
Now you have to remember this was in the mid 1980’s. I could not pick up the phone and send him to my good friend Elsa Abele, who knows more about pragmatics than I ever will. Elsa herself did not start getting involved in pragmatics till the early 90’s, and she has told me that most of her first clients were my patients, who I had diagnosed with Asperger’s in the ‘80’s.
It occurred to me that my tape recorder in those days had a plastic window with an arrow that moved up and down according to volume. If things were too loud, it went into a visible red zone. So we would sit in my office talking and playing with the tape recorder between us. If he could keep his voice from making the arrow go into the red zone for 5 minutes, he got a reward.
It seemed like a pretty reasonable intervention to me. Instead, within a week, he became obsessed with tape recorders. And any that he could get his hands on, he painted the red zone with green magic marker. Then he got obsessed with taking tape recorders and radios apart. I had created a Destructo Demon who still had a foghorn voice
By the 1990’s, many other people were beginning to work on the upper part of the spectrum, and I no longer felt so alone. In 1995, when I left my job at McLean Hospital, I went into a mostly private practice, where I could pick and choose my patients. It was at this point that I became absolutely over-run with patients with Asperger’s. While there were some OT’s and speech therapists and psychologists, there were still very few physicians who felt comfortable with AS. Even though I tried to preserve the part of my practice in which I saw other kinds of patients, I was deluged with spectrum kids and adults, often seeing as many as 10 Asperger’s patients a day, giving many talks about it, and doing lots of school consultations. I literally dreamed about fragments of Asperger’s conversations and sessions almost every night for at least three or four years, trying unconsciously to metabolize what I was immersed in.
It is amazing how encompassing the Asperger’s experience can become. Even today, if my wife Barbara and I go to virtually any social event, say a wedding or a cocktail party or a college reunion, and people at the table discover I understand a lot about Asperger’s, it seems that everyone knows someone or has a relative with this disorder, and that’s what the table talks about. I find it uncomfortable to be considered an Expert or “the Guru” on a subject that I feel still do not completely understand and have a many unanswered questions about.
But there is another very personal and often guilty set of feelings that I sometimes bump up against in my broad experience with Asperger’s. Psychiatrist refer to these feelings as Countertransference Reactions.
Now many of you are aware that the term Transference in our culture has come to mean projecting subjective feelings or judgments from some important person in your past on to the therapist or some other authority figure, who has come to represent at that moment, the old past relationship. Hence, in a clichéd example, we often unconsciously invest in a kindly and elderly boss or professor or therapist some of the warmth and even love that we had for, say, our idealized father. Like so many other child therapists, I always get a big kick when one of my child patients, in the midst of some intense board game, will blurt out spontaneously, “Mom! Watch out, you’re a goner if you move your man there.” This happens about 2-3 times a year.
Countertransference is sort of the opposite. The reaction I’m talking about, is the situation where the therapist unconsciously invests in the patient some feeling that comes from some other part of his own life. These feelings can unknowingly effect the therapist’s actions towards the patient, for better for worse, depending on whether the original relationship was positive or negative. Therapists are highly trained to be constantly alert to these reactions in themselves, or the feelings can do considerable damage in a therapy.
Here is an example of a piece of my countertransference that took place many years ago that I still feel embarrassed and guilty about, even though I’ve since worked hard on analyzing my actions. I was once treating a10 year boy with Asperger’s, whom people experienced as cold, surpercilious, and extra-competitive. Not only did he always have to win, but he was gleeful in victory. He was an incredible chess player, well on his way to becoming a champion. He had read almost every chess book and memorized thousands of games. He insisted that we start each session with a chess game, during which he sadistically checkmated me by the 8 or 9th move, and then lorded it over me.
Finally, and almost as an intellectual puzzle, I asked myself, if I truly wanted to beat him (and by this time I truly did), how could I use what I knew about his Asperger’s to do it. [This is pretty embarrassing, and it is a bit painful for me to tell this story.] After thinking about it for awhile, I realized that whatever opening I used, he had memorized all the opening moves. In fact he had memorized virtually every set of chess moves someone at least at my middling level of chess might ever use. So I decided to move absolutely randomly. I decided to disregard every known chess strategy. I moved my bishops out to the corners, my knights away from the middle. Any mediocre player would have defeated me immediately, but my patient had never seen a game like this. He was dumbfounded by this new strategy, and did not know how to proceed. He made a stupid mistake, and in only a few moves his Queen was exposed, he was checkmated, and I had won.
And I immediately felt terrible, and wished I had not done it. He began to cry and wanted to go home. It was a very difficult session. Hours later, when I was still trying to figure out why I had allowed myself to beat him, it dawned on me that my brother, who is four year older than I am, often played board games with me when I was around 8 or 9, and he always mercilessly beat me. All these years I had forgotten how furious it made me. When your patient unconsciously reminds you of your brother, that’s countertransference. As I said before, it is imperative that the well-trained therapist has to be scrupulously careful about examining his unconscious feelings about his patients to guard against or repair these kinds of reactions.
But in truth, my over-identification with my patients often works in opposite ways than this. For years, it has been very hard for me as a physican to see my patients mistreated by individuals and institutions who should know better. I have to constantly guard against losing my professional posture when outrageous things happen to my patients.
This often comes up in the arena of “discipline” and “punishment” in schools. Now I want to be very clear how much I respect our schools and especially how much admiration I have for so many of our teachers and Sped personnel. They have often made a huge difference for our spectrum children. In the last few years, they have been struggling to perform services in the midst of horrendous budget cuts, financial constraints, and tax over-rides. I cannot say enough about the truly memorable individual school staff I’ve worked with.
But every once in a while staff not only don’t get it, but inflict shockingly insensitive disciplinary measures, which make me angry enough to behave non-professionally. I have had a few patients where school principals actually called the Police to punish infractions. Once a young 7th grader with High Functioning Autism was actually taken to jail for several hours for lightly kicking the shins of a male aide. Another time, a 6th grader refused to do a spot quiz and ripped the quiz paper up. He was told that since he liked ripping paper so much, he would have to go down the hall to a small room where he was punished by having to rip discarded papers for several hours.
Not only schools, but other agencies of our society still do not understand or make allowances for Asperger’s. The adult criminal justice system has been particularly slow to understand. I have had several patients over the age of 18 sentenced to jail for serious time for various felonies, committed without understanding the consequences or legal implications. Some of the saddest days of my practice, have been just before these kids went off to prison, when I worked with them paradoxically at running backwards the social skills they had been taught. In preparation for prison, I needed to re-teach them not to make eye contact with anyone, to stand at the periphery, not to ask questions, not to self-advocate if someone is taking advantage. Prison is one of the worst experience I can think of for people with Asperger’s. The guards can sometimes be as brutal and insensitive as the in-mates.
These empathic failures in our society bring me much resentment and even more sorrow. But parents of Asperger’s individuals have to live with inflictions of even deeper sorrows. I want to return now to talking about the profound, highly personal, and private sorrow of bearing a child on the autistic spectrum, and then being forced to grieve for all that means in the deepest recesses of parenthood. I said a few minutes ago that I am not sure we talk as much about this as we ought to in these meetings, and I want to take a few minutes now.
Several years ago, I was asked to speak at a small conference about Grieving and the Autistic Spectrum. I shared the podium with a very thoughtful psychoanalyst, who himself had a ten year old child with severe Autism, who was so difficult that he was institutionalized. The analyst spoke about his own trauma and that of other parents of severely autistic children. He pointed out felt that for parents of more severe Autistic individuals, the trauma is so cruel because it is unremitting and sustained. More importantly, the severely autistic child is so difficult to empathically relate and connect to, that the very mourning process becomes distorted and protracted.
But I have always wondered if the Grieving Process on the upper part of the autistic spectrum has a different texture and quality. I believe all parents of every healthy newborn experience intense joy and pleasure. I know I did. In our adoring parental eyes, this baby has boundless potential for accomplishment. It embodies a kind immortality for us in the carrying forward of our family-line. It seems to have, in those early years, the promise to render boundless returns on investment of love. But for the parents of the severely Autistic child who often knows relatively soon in infancy that something has gone terribly wrong, the fall from pleasure and joyfulness is rapid and brutal.
For parents of Asperger’s children there is in some ways a different kind of cruel touch: that is, many of the Asperger’s toddlers and preschoolers appear at first truly gifted. Those with hyperlexia are reading by age 2 or 3. Others have prodigious memories for facts and numbers, while some have encyclopedic knowledge of insects, the solar system, or, like the Penguin boy, for species after species of marine life. While the parents are investigating educational programs for the gifted, the realization slowly dawns that sociality and reciprocity are significantly deformed. The special interests and splinter skills, which carry forward into childhood and beyond, can become a cruel reminder of the fall from earlier parental pride and delight.
The trauma of having a young infant labeled with the diagnosis of severe autism has been referred to vividly as a kind of internal “shattering,” —a metaphor for me much like the sudden dashing into pieces of a plate of glass.
I have spoken with some parents of children with Asperger’s who have voiced similar but less intense feelings. I do not know this for fact, but I believe the experience of dislocation for parents of children on the upper half of the spectrum is perhaps less shattering, and is quantitatively different from the internal reactions of those parents of children on the more severely afflicted half of the spectrum,
Because of the slower unfolding and the lesser degree of the neuropathology, the diagnosis of Asperger’s is usually made at least three years later than that of Early Infantile Autism. For the Asperger’s parents, the fantasy and the reality have had more time to commingle and become more stable and substantial. There is much more opportunity for mutuality and reciprocity between parents and the Asperger child. Metaphorically, the “shattering” with Asperger’s Syndrome is more like the breakage of safety glass in a windshield. The whole stays together better, fewer pieces fly off, and not at the same time.
But most important, the re-combining of the fragments, the restoration and healing for the parents of children with Asperger’s, is in the slow and steady growth and development of the child, in the child’s courage and creativity, and in his or her relentless tropism towards health and hard-fought efforts at empathic connection. It is the child itself who can do a lot to help restore for the injured parents their sense of inner worth, self esteem, and integrity as parents. And that is one reason why the stakes are so high for optimal early and continued intervention.
Two years ago, at the Tenth Annual AANE conference, I gave a talk entitled “Ten Years, Ten Observations.” I spoke briefly about 10 separate but overlapping issues of the decade, such as: the increasingly high prevalence not just of Asperger’s but the whole spectrum; the lack of precision in diagnosis of Asperger’s; the promise and the disappointment of medications, and so forth.
Today, since I am also looking backwards but in a more self-disclosing way, I thought I would touch on several deeply felt issues related to my own immersion in the Asperger’s experience. I want to focus on the personal experience of being an Asperger’s therapist, and finally in the last few minutes of the talk, turn to issues of being an advocate for Asperger’s patients in the community at large. I believe these observations have relevance to all the many disciplines we use to treat people with Asperger’s, such as OT, Speech Therapy, Psychology, and Social Work, not just Psychiatry.
1) In deference to Eric Ericson, I will call the first observation, Fatigue in the Therapist vs. Energy Conservation. To those professionals of all disciplines in the audience this morning, I must warn you how exhausting it is doing on-going and multiple therapies with individuals with Asperger’s of all ages year after year. The required activity level, the constant need for creative reframing, the repetition, the accompanying of children out of the office, the effort to keep an emotional connection over time, to name a few, are extremely grueling and draining.
And the quantity of after-hour phone calls to and from teachers, pediatricians, co-evaluators of all sorts, not to mention parents, is also enormously time-consuming and arduous. This barely acknowledged, end-of-the-day fatigue in the treater in some ways parallels the exhaustion in the Asperger’s kids who, in an average school day, are putting enormous effort into juggling their ADHD and SI issues, their social and transitional anxiety, assorted learning deficits, and a host of other hidden demands we cannot even imagine. My after-hour phone calls are also in some peculiar way analogous to all the scheduled after school therapeutic activities like private OT, social skills groups, tutoring, therapy, Homework Club, karate, all of which eat into the kids’ “down time,”—a quiet, solitary, restorative time we all need—but which individuals with Asperger’s need even more. I would strongly advise therapists not to schedule more than 3 or so intensive therapy sessions per day with Asperger’s individuals. It is important to shuffle your schedules with other kinds of non-Asperger’s cases, or do groups, professional teaching and speaking, and perhaps writing and research.
2) My second observation I think I will call Countertransference Loneliness vs. Shifts in Fulfillment. The intense psychotherapy of Asperger’s youth and, especially, adults can take a different kind of toll on therapists than just physical exhaustion. I am talking about the personal hardship a treater faces trying to consistently empathize with a group of people who are so different internally. As I said in the beginning of this talk I, like so many mental health professionals, was drawn to this field by the wish to connect and understand.
There is some intangible but powerful satisfaction that transpires when you can let someone know that you share and understand a difficult feeling or inner reality. Therapist and patient often do this nonverbally, by a subtle facial expression, a caring elevation of an eyebrow, leaning slightly forward, or some other delicate gesture that completes a reciprocal exchange of shared inner experience. Sadly, these moments are rare in the psychotherapy of individuals with Asperger’s.
Another very gratifying part of therapy with neurotypicals occurs when, after a great deal of tactful and thoughtful effort on the therapists’ part, the patient experiences deeply emotional insights or self revelations, and these presumably lead to internal change and adaptation. These also are very hard to harvest in Asperger’s, where most therapy is cognitive behavioral, and relies on patterning of external behaviors and actions. If you are the kind of therapist who searches for these moments of affective transcendence, it can be like panning for gold nuggets in a muddy Sacramento River.
So insight-oriented psychotherapy can be very lonely and empty. I have had colleagues who’ve tried to do therapy with AS adults. They experience a sensation of being cut off, of feeling unable to influence anything that really mattered, except maybe some suggestions about job searches and advising on social skills. I myself feel that intensive life skills coaching is incredibly useful, but still, there are many adults and even older children with Asperger’s, with whom one can do satisfying humanistic-relational therapy. The satisfying shift for me away from loneliness, lies in trying to understand the different inner reality of the patient. For most of us therapists, this a right hemispheric, inferential experience. In a very odd way, I have come to learn to empathize with Asperger’s folks by partially shifting right hemispheric intuiting to a mixture of more left hemispheric analytical process. Who is this person? What would he feel, if he could feel something like what I am feeling? How can I package emotional insight into left hemispheric language, and still convey relational connection?
It often comes down to how to truly feel and convey affection and fondness for the patient. One must be able to maintain a warmth for the patient, when the interpersonal life he talks about seems so flat and monotonal and emotionally drab, while at the same time the patient’s expressed excitement lies in facts and rule-based activities and graphic, left-sided, “brain teasers,” like computer games or mineralogy or quiz shows.
3) This leads to my third point, which I will call Ability to Absorb Anxiety. One extraordinarily important aspect of the Asperger’s population is their pervasive anxiety. The anxiety fuels their rigidity. In my thinking, anything that reduces anxiety, by definition, increases resilience and adaptation.
Here is a pearl. You cannot truly understand a person’s Asperger’s profile until you really understand his or her anxiety. This can be somewhat different for each person. I am not simply talking about recognizing that it is there. We all know the usual arenas where the anxiety gets played out: transitional anxiety, performance anxiety, social anxiety, anxiety at discrepancy or at violation of expectancy.
I am referring to a need to comprehend the inner dimensions and the substance of the anxiety. At its heart, it is often a nameless disorientation, a loss of balance, an absence of any basic sense of goodness or trust in the future unknown, or in the yet-to-be-experienced. The resistance to change, like all perseverations, is, at its core, a security operation. Deep inside, transition and discrepancy threaten inner cohesion and sense of inner direction, the loss of up and down. For many with Asperger’s, there is no internal compass to rely on, to show you the way in the forest of a new event. This feeling is often walled off by a dense protective shell of oppositionalism. If you force the issue, say as a parent, the child feels a ferocious sense of betrayal: “Why can’t you protect me, why do you make it worse for me?” To the frightened Asperger’s child, at that moment, the mother cruelly defrauds that unspoken contract of unconditional love, by relentlessly pushing the child forward into the mundane demands of life. From the Asperger’s child’s perspective, he or she is being shoved down the dangerous gauntlet: go to school, go to bed, cut your nails, change your underwear, eat this roasted chicken, call up that classmate, just try on the new dress. In his neuro-untypical soul, for the AS person, change and novelty is a storm cloud threatening inner disruption and dislocation.
In the last 6 or 7 years, I have shifted my private practice. To my dismay but to my relief, now I do not accept any new weekly, on-going psychotherapy cases. I do have several old, long-term, with neurotypicals, many of whom I have been seeing for over 25 years. I also have a huge number of Asperger’s patients whom I started seeing years ago, and who I now see once, twice, or several times a year. A wonderful part of this is that many patients I started seeing in, say, early elementary school, have stayed in my practice for decades. I have watched scores of kids, and incidentally their siblings, grow and adapt and move forward into their lives, and this has been a privilege.
I have also seen, by the way, many of my colleagues and friends who work on the autistic spectrum grow along with me and my patients. It is thrilling to see how many of these good friends’ insights, expertise, and commitment have matured and blossomed over the years. They, and others like them who have joined the battle, who have been toiling these years on the spectrum, have become inspirations and resources to patients and families, and models and mentors for young therapists.
I now primarily do consultation and diagnostic evaluations for new patients of all ages who have high functioning PDD or related disorders. I miss getting to know new patients in depth, but the consultations are still quite fascinating to me. I no longer am excited simply by making the diagnosis of Asperger’s Disorder. Now I am especially interested in what kind of Asperger’s the patient has. What is his unique profile, and what ingredients of that smorgasbord menu that is Asperger’s Syndrome does he or she demonstrate? How does the profile suggest specific interventions, not just the usual generic Asperger’s accommodations? How much of the future is predicted by the profile, and how can I convey realistic optimism to parents about the prognosis?
Currently, I often receive referrals of very complicated cases with many overlapping diagnoses. I am especially involved with a varied population of children who present with neurocognitively based symptoms leading to inflexibility and social disconnectedness. At any one time in their development, they may have symptoms associated with several over-lapping spectrum disorders, such the Asperger’s continuum, the ADHD-Bipolar spectrum, and Tourette’s and Obsessive-Compulsive Disorder. The intensities of these overlapping symptoms can vary greatly during the life cycle. So at 7 years old, a child may be primarily treated for Tourette’s Syndrome, which remits in a year or two, and then Asperger-like symptoms become prominent. A child with Asperger’s may develop a so-called Mood Disorder, and become a candidate for Bipolar medications. These symptoms wax and wane, and the intensity of any one of these intersecting spectrum disorders trumps the other diagnoses at any particular time.
I am struggling to dissect these overlapping syndromes. While discrete diagnostic labels like Asperger’s or ADHD or OCD may have different validity at different times, these disorders seem to be associated with a small olive-sized collection of neural tissue deep inside of the brain, called the Basal Ganglia. Some day we may refer this whole group of children who have various severities of tics, who are obsessive, unmodulated and socially dysfunctional as having Developmental Basal Ganglia Disorder, rather than having a long list of discrete, single diagnoses that come and go in intensity over time. One of the major consequences of this family of disorders is social rigidity, lack of flexibility, and difficulty with spontaneous adaptation. In fact, descriptively, I often think of this overlapping population of children with Tourette’s, OCD, Asperger’s and ADHD as having a disorder of mental rigidity. Perhaps one of their most significant vulnerabilities is their lack of resilience.
In the last decade, our society has learned a great deal about resilience in normal children. For example, my good friend Bob Brooks, and several of his colleagues, have written and spoken extensively about how to foster this quality of resilience, of coping and sense of inner-competence in our own neurotypical children. However, we who deal with Asperger’s Syndrome and these related disorders, have a special responsibility to figure out how to increase resilience in neurologically rigid and socially disconnected children. This is a difficult task.
We already know many techniques, but there is still much to be learned. The workshops we will go forth to after this keynote address will highlight many of these techniques. We know that Asperger’s children can do well when loving parents provide structure and stability and enjoy their children’s strengths. Adults with AS who have found a supervisor or boss at work willing to be directive or flexible enough to accept the individual where she is, these Asperger’s folks also have been able to access greater resilience. In a safe and caring environment, socially challenged individuals of all ages are willing to take a chance and practice social skills that do not come naturally to them.
But teaching resiliency in this population is more than a personal, a family, or even an professional issue. At the end of the day, fostering resiliency in these children and adults is all about the larger community. We, who live and work with autistic spectrum disorders, need to convey to the general community the crucial importance of support, acceptance and accommodation in schools and in the workplace, where many individuals with Asperger’s are still not understood well enough.
As a Commonwealth, how much is Massachusetts willing to climb out there on the limb with our special needs citizens? I am not just talking about sympathy and compassion, but especially about money, funding, flexibility, and programming. Recently I attended three IEP meetings in wealthy western suburbs where IEPs were refused because the Asperger’s children’s grades were acceptable. When will NO CHILD LEFT BEHIND mean for Asperger’s kids NO CHILD SLIPPED THROUGH THE CRACKS? Why do PDD-NOS kids have to pass MCAS to graduate? Why does DMR refuse services to an adolescent, like one of my current patients, whose IQ score is one point above the cut-off, but who cannot make change or cross the street without supervision? When will some highly challenged Asperger’s adults stop plummeting into a no-man’s land between DMH and DMR?
How much are we willing as a community to bend the limb for people who have neurological rigidity and innate social differentness? Our workplaces need to make jobs more easily available to Asperger’s adults who are slower, who dress and relate differently, but are often steady, and conscientious workers, who deserve more than they get. We need to be resilient as a culture in order to foster resilience. Sadly, we are simply not there yet.
My friends, there is a Wall in front of our disabled sons and daughters in this country. Perhaps it is weakening a bit, but this Wall is nevertheless higher and wider than it should be, and more impenetrable than we in this room want it to be.
Some of you may not see the Wall clearly because you have seen so much progress for our children compared to a decade ago. Some will say the American for Disability Act has breached it. But there are still too many Asperger’s children circling the edge of the playground alone at recess, friendless or bullied. There is the little girl suspended from school for a week for making a symbol of a gun with her thumb and forefinger, or all the Asperger’s middle schoolers screamed at by the hall monitors or angrily punished by the Vice principal. They are still not understood. Say there is no wall to the young college graduate, who has had a hundred interviews in two years with no call backs, or to the brilliant young lady fired repeatedly from menial jobs, or to the naive, uninformed Asperger’s college student sentenced to a mandatory 5 years in prison for downloading child pornography.
We are doing better, and our patients are so much better off than they were ten years ago. Many of our Asperger’s adults have gone on to make significant contributions in the workplace, and we can be truly proud of them. We should take hope and courage from these impressive gains. But too many individuals with Asperger’s Syndrome and their families still live in the shadow of that Berlin-like wall I alluded to—in a lonely, isolated, stalemated life of unrealized potential and stultified pain. Today, there are people with Asperger’s of all ages who call out to us silently, with a voice they cannot lift because of the nature of their disability. They call soundlessly, but no less poignantly.
I ask you to raise your voices for them, to make yourselves heard in our schools, our marketplaces, medical centers, research labs, and legislatures, and especially in charitable giving. All of us can join voice symbolically and in reality with those silent individuals with significant special needs. We can do it with our renewed support, our checkbooks, our attendance in PACS and school committees. Wherever in the larger community our commitment can be expressed, we can be there, and we can make a difference.