Talking Autism… Now

- The Beautiful story of one of our supporters Bob, written out by Macy Graham (Thanks Macy!)

One summer, Bob Lehr pushed a videocassette of “Rain Man” into his VCR. It was a movie he had put off seeing, despite Dustin Hoffman’s Oscar-winning performance as an autistic man. Sitting in the room with Lehr was his 16-year-old son, Ben, who at a young age had been classified as autistic. Currently, the Lehrs were told, he had an I.Q. of about 37 and the reasoning ability of a preschooler.

Although Ben attended high school in Syracuse, he wasn’t taking academic classes, and there was no evidence that he could read or understand arithmetic. His vocabulary was limited, and some of the things he said made no sense at all — they seemed to be random phrases picked up from television and school.

Over the years Ben had gouged himself with knives, ripped electrical sockets out of walls, taken a hatchet to the fiberglass bathtub and used his head to smash most of the windows in the house. In calmer moods, Ben liked to stare at objects, like tape-recorder reels, or stand at the kitchen sink, running the water through his fingers for hours

When Raymond Babbitt, the Hoffman character, appeared on the screen, Ben rocked back and forth, moaned and hit the side of his neck, until his father grabbed a nearby laptop computer and asked, “Is there something you want to say?” With his hand resting on Bob’s for support, Ben typed out, “That man is autistic.”

Rain Man

Ben was using “facilitated communication,” a writing technique introduced to the United States from Australia in late 1989 by Douglas Biklen, director of the division of special education and rehabilitation at Syracuse University. As the name suggests, it is not a cure for autism but an aid to communication: a parent or teacher supports the arm of an autistic person as he or she types out messages on a keyboard, using the hunt-and-peck method. In the Syracuse area, 45 autistic children and adults using facilitated communication are expressing their feelings and helping explain some of the enigmatic behaviors associated with autism.

Autism is characterized by, among other things, an inability to feel love or form social attachments, a lack of self-awareness, mental retardation, difficulty understanding speech and an inability to grasp abstract concepts or symbols. Biklen’s researchers, however, are finding that some people who have been labeled unteachable can read, write, calculate and do schoolwork appropriate for their age.

Preschoolers use facilitation to tattle on classmates, and teen-age boys try to find out if girls are interested in them. At their keyboards, students write poetry, tell lies and even crack jokes. When Ben Lehr was asked, as part of his biology homework, to name two causes of high blood pressure, he answered, “Cholesterol and tests.”

At home, Ben has been using the keyboard to try to help his family understand his behavior. He attempts to describe the difference between being the gentle, likable young man so fondly regarded by his teachers and many friends, and being capable of such anger that it frightens him. It’s not “Ben” who causes such damage and pain, he has spelled out, but “host,” a term his sister Penny guesses came from his biology classes. Explaining host seems excruciating for Ben; in one two-hour session he ekes out the typing while screaming, banging his head on the floor, biting himself and hitting his mother, Sue, and his sister Sherry.

Facilitation has given Ben and others a voice, not a cure. It is therefore profoundly encouraging and profoundly frustrating. “What the students are telling us is that they don’t want to have autism, and that they want to be able to talk,” Biklen says. “And these are things that are probably not going to change.”

BIKLEN’S WORK IN SYRACUSE HAS ALREADY challenged the traditional understanding of autism. If it can be applied to a broader group of autistic people, facilitated communication could upset a half-century of thought about this baffling cluster of disabilities.

Before 1943, when Leo Kanner, a child psychiatrist at Johns Hopkins University, published the first systematic description of the disorder in a medical journal called Nervous Child, autism was generally regarded as “childhood schizophrenia” or “childhood psychosis.” Kanner’s term, “infantile autism,” pointed to the child’s apparent preference to dwell in a self-generated world rather than form relationships with other people. And for decades, such withdrawal was blamed on insufficiently nurturing parents, popularly called “refrigerator mothers.”

Then in his 1964 book “Infantile Autism,” Bernard Rimland, founder of the Autism Society of America and director of the Autism Research Institute, argued that the causes of autism were neurological, not psychological. He cited, among other things, studies in which sets of identical twins were found to be autistic — while other siblings are almost never autistic, despite being raised in the same home. Other leaders in the field, notably Bruno Bettelheim, continued to treat autism primarily as a mental illness.

Even today the precise physical cause of autism remains elusive. Two hypotheses currently lead the pack: it may be a result of excess levels of serotonin, a neurotransmitter, or underdevelopment of the brain. In the meantime, relatives of the autistic find themselves bombarded with new causation theories, behavior modification techniques, medications and teaching methods. Some of these have improved the lives of some people, but many have merely disappointed.

Biklen initially regarded facilitated communication with skepticism. A specialist in mental retardation, he has worked for many years to integrate developmentally disabled children into mainstream classrooms, and in 1972 he helped start the nationally renowned program at Edward Smith Elementary School in Syracuse, at which developmentally disabled children attend classes with “normal” students.

He first read about facilitation in a 1980 book, “Annie’s Coming Out,” written by Rosemary Crossley and Anne McDonald. McDonald was born with cerebral palsy and lived from the age of 3 in St. Nicholas Hospital in Melbourne, Australia, a state-run institution, now defunct, for severely retarded people.

Annie's Coming Out

When Crossley, who had an undergraduate degree in humanities, became a “play leader” at the hospital in 1975, McDonald was 14 and her mental age was measured in months. Two years later, Crossley had taught her to read, and McDonald revealed a sophisticated ability to write and do math, although she required Crossley’s support on her arm to fight her powerful muscle spasms and point accurately to her answers.

In 1979, McDonald successfully sued for the right to leave St. Nicholas Hospital and has lived with Crossley ever since. McDonald went on to college and published journal articles about rights of the disabled.

Her case generated a white-hot controversy, with Australian psychologists and speech therapists accusing Crossley of putting words in McDonald’s hands, as it were. But the Supreme Court of the state of Victoria decided otherwise, ruling that McDonald could control her own life and finances. Five years ago, the Government recognized Crossley’s work with nonverbal people by honoring her as a Member of the Order of Australia

While giving a series of talks in 1985 on integrating the disabled into conventional schools, Biklen had dinner at Crossley’s house in Melbourne and observed facilitation in action. He had never doubted that such a technique could work for some people with cerebral palsy, many of whom have normal or above-average I.Q.’s. But a year later when he got a letter saying that Crossley was using the same technique with an autistic child, he replied perfunctorily. “They were nice people, and I didn’t want to have to say, ‘You’re crazy,’ ” he recalls. “From what I knew about autism, and I knew quite a bit, it just didn’t make sense to me.”

Curious nonetheless, he revisited Australia twice, briefly in November 1988, and for six weeks in mid-1989. There he observed Crossley’s work at the DEAL (Dignity, Education and Language) Communication Center. Supported by the Government, the center has helped more than 800 people with non-speech communication.

Some Australian professionals warned Biklen away from the center, calling it a hoax. But the clients Biklen saw communicating through facilitation — including people labeled autistic — erased his doubts. Among them was the autistic boy Crossley had written to Biklen about in 1986, who, she says, had been used in Australia as a benchmark of the “unteachable, unreachable autistic child with no potential.” In Biklen’s presence, with a staff member’s hand resting on his shoulder, the boy typed: “I like Dougg butt hhe is maad . . . He talks to me like I’m human.”

On returning to the United States, Biklen described what he had seen in an article titled “Communication Unbound: Autism and Praxis,” which appeared in the August 1990 issue of the Harvard Educational Review. For Biklen, facilitated communication had become something more than an intriguing line of research. “It was important for me not only that I could in some way prove what I had seen,” he says. “But I also felt an absolute moral obligation to get it in place in the United States.”

More can be learned through our Workshops

Gifted Is The Word

- Another truly emotional and utterly special story send in by one of our supporters: Kelly Mulligan (Kelly, you are an amazing woman! I thank you for this)

When Maggie was still in the womb, meconium, the first stool passed by an infant, lodged in her breathing passage and hindered her ability to take in oxygen when she was delivered. An electronic fetal heart rate monitor might have helped, as it does for babies today. But in the 1960′s fetal monitoring was in its infancy. In fact, it wasn’t until the mid-1980′s that this device came into widespread use. Without a heart rate monitor to give a fetal distress warning, Maggie’s fate was sealed. She was born with irreversible brain damage leading to Autism.

My parents were devastated. I, on the other hand, not understanding the long-term implications of her disability, cheered her arrival. The third of four children, I liked the idea of having a baby sister. At the time I was too young to understand Maggie’s handicap, although it was evident early on. As an infant, she had difficulty coordinating her sucking and breathing and, thus, it was hard to give her a bottle. On her first birthday she could not sit, but had to be propped in a highchair by a pillow. Maggie did not begin to walk until she was 18 months old. But at the time none of this mattered to me. What I remember’ most about my baby sister was her thick, naturally curly, brown hair, which framed her delightfully round expressive face. She was funny and silly. When she finally learned to walk, she would spread her legs wide apart, bend over, sausage curls dangling, and peer at us between her legs with a broad smile sweeping across her face.

Of course, as the years passed and I grew older, I recognised that Maggie and I were different. Things that came easily to me, she had difficulty achieving on her own. To this day, for instance, she cannot tie her shoes; she lacks the Maggie McDonald and her fine motor ability for that. But the differences are much greater than this. While I moved from one exciting milestone to the next–boyfriends, graduations, a career, marriage, children–Maggie stayed at home with my parents, often spending her time in the solitude of her room, listening to music and putting puzzles together.

These are differences I see clearly in adulthood, but as a child I did not know any better. Maggie was simply my sister. It was when my innocence was tarnished with ignorance that I began to see her differently. A friend of my mother had a daughter a few years younger than Maggie. My mother kindly offered the woman some of Maggie’s hand-me-downs, but she quickly refused. The words, though unspoken, permeated the air–she did not want her child’s skin rubbing against the clothing worn by a “retard.” In her uninformed opinion, the risk would be too great. This occurred again and again. Daily I was bewildered to see parents passing their uneducated views onto their children, who in turn acted with unusual cruelty toward my sister. It was clear to me, even in my youth, that some adults, although they appeared friendly on the surface, were the kingpins of hate and their children were their hapless pawns.

A painfully shy and quiet child, I initially watched this progression with a certain detachment, until anger and rage grew and inevitably erupted. For me, silence was no longer an option. Maggie helped me find my voice. On days when she burst into the house in tears after being teased and taunted, I marched outside, bypassed the children and headed directly to the source–their parents. I remember telling them in no uncertain terms about the injustice and harm they were inflicting upon my sister. They often looked at me through their screen doors with glazed, steely expressions. It was a look I had seen before.

Child Autism

Some of the families attended our Catholic church. As was their routine, they’d parade into Mass dressed in their finest clothes and mindlessly participate in the service. They’d sit, stand, kneel, pray and sing, but when the priest gave a sermon with a lesson about love, kindness and acceptance, the families would fidget, whisper or stare ahead, pretending to listen but hearing nothing. I know this is true, for if they had heard even an eighth of the words spoken, they could have applied this goodness to their lives.

This is not to say that I have been a paragon of goodness myself. Nearly five years old when Maggie was born (the age my son Ryan is now), I’m sure I felt a loss when my parents’ attention shifted wholeheartedly to my sister. Sometimes, as an adult, I have asked my mother what I was like at five, six, seven or eight, and she can’t remember. In her words, years of her life were literally “blanked out” by Maggie’s circumstance; so years of my life were “blanked out” as well. I recall my parents being very overprotective of Maggie. Once, when she wandered away from our home in suburban Cherry Hill, N.J., they were hysterical with fear and blamed me and my older brother Tommy and my older sister Susie for her disappearance. After a lengthy search, Maggie reappeared on her own, innocent of the turmoil she had caused.

Her dependent existence boosted my early independence, but at the same time put severe restrictions on it. One day, out of pure frustration I said to her: “You’re retarded, you know. And I hate it. I hate it.” Although she had heard this from others, never before had she heard it from her own sister. My stark words stung, and she cried. A shower of guilt and shame washed over me. On that day I learned a vital lesson about sensitivity. Needless to say, I have never uttered biting words again.

Over the years, Maggie, without knowing it, has challenged me, forced me to grow as a person, especially during the times when I felt like buckling under the pain life often thrusts upon us. After the birth of my first son, I desperately hoped the second baby I was carrying would be the little girl I longed for. My mother, father and Maggie accompanied my husband, Tim, to my obstetrician’s office for and me a tell–all ultrasound. It was a jovial occasion. My father and husband placed dollar bets on the sex of the child, and my mother gave me a good luck doll as a gift for her future granddaughter. I felt sure it must be a girl, but the ultrasound revealed otherwise. I would have another son. I was devastated and cried uncontrollably. For more than an hour I lay across my bed and mourned the loss of the daughter I would never have.

My parents and Maggie waited patiently in the living room. But my mother soon appeared and said: “Enough crying. You’re having a son. But your doctor says he’s healthy. Be glad of that.” These words spoken by my mother, who clearly understood what it was to have an unhealthy child, provided an instantaneous reality check. Suddenly I felt petty and selfish. Maggie appeared in the doorway. As I glanced in her direction, wiping my tears, I decided I must try harder to count my blessings.

My parents have tried to do the same. Since Maggie’s birth they have held steadfast to the belief chat my sister is a “special gift from God,” as are all people with mental retardation. Honestly, this thought process never made any sense to me. Certainly it appears Maggie has been cheated out of a full life. She will never have a career, never have the love of a husband, never enjoy the pleasure of a sexual relationship, never have a child of her own, who in quiet moments would gently wrap tiny arms around her neck and whisper the words we mothers long to hear–”I love you, Mommy.” Knowing all of this, I have, in cynical moments, questioned whether Maggie is a gift or a cruel mistake, God’s faux pas. But then I dig deeper and believe there must be a purpose, a reason for her existence.

Not too long ago, our neighborhood playgroup gathered at Playspace, an interactive play area, which has a miniature restaurant, grocery store, doctor’s office and theater. In this setting our children engage in imaginative adult–like activities. Dressed in various costumes, Ryan and his buddies energetically performed a play. Off to the side of the stage stood a boy about their age with Down’s syndrome. He intently watched their humorous attempts at acting. My son and his friends recognized his interest but ignored him, and the boy was left to stand-alone. At that moment I wished my son would break away from the pack, from the comfort sameness brings, and reach out to this child. I wished my child would dare to be different, would act with sensitivity, would look beneath the surface. I realized that day I had much to teach my children, but I wondered where to begin.

When Maggie finished reading the storybook to Ryan, they remained seated on his bed. He told her about our mad rush to a movie theater earlier on that day. I had promised to take the boys to the latest Disney movie, but just as our turn came to purchase the tickets, the attendant told us the movie was sold out. Ryan told my sister how sad this made him. Without missing a beat, she comforted him by saying, “If you don’t see it at the movies you can rent it when it comes out on video.” Practical by nature, Ryan appreciated her advice and exclaimed, “You’ve got a good brain, Aunt Maggie!” He patted her head. She smiled and said, “Thank you, Ryan.” The door creaked. In unison they turned and captured me spying on them. “Just seeing what you’re doing,” I explained. “We’re reading books, Mommy,” Ryan said. “O.K. then, I’ll get going,” I replied, sensing they wanted to spend some more time alone.

I bent down, picked up the laundry basket and headed to my bedroom. As I began to fold the clothing, the question that plagued me for so many years–why?–finally had an answer that made sense. I believe my sister and people like her have been sent to this earth on a mission. Their job is to challenge us, expose our weaknesses, build our strengths, discourage hate and encourage understanding. They’re here to show us that life isn’t perfect and neither are we. But there is hope for all of us if we take risks, step outside our own personal cocoons and embrace each other despite the superficial differences that conspire to tug us apart.

With the last shirt folded, I lumbered down the steps and into the kitchen to begin dinner preparation. Maggie’s and Ryan’s buoyant laughter chased after me. I won’t disturb them again, I thought. Maggie has a gift to share with my son. I want to give him time to unravel the beauty within the package.

– Stories like these empower us at the Autism Solution Center and make us appreciative of everything we do. I hope they gave our readers some good energy too.

Incredible speech on Autism at Ted Talks

In this calm and factual talk, geneticist Wendy Chung shares what we know about autism spectrum disorder — for example, that autism has multiple, perhaps interlocking, causes. Looking beyond the worry and concern that can surround a diagnosis, Chung and her team look at what we’ve learned through studies, treatments and careful listening.

Highly recommended!

Welcome to the Autism Solution Center!

Pardon our Dust!

We’re excited to be on a new web platform! Over the next few weeks we will be bringing back all of the great information, resources and articles that we have shared with our community over the years. Please bear with us as we sort through mountains of data and post it on the website.

Welcome

At the Autism Solution Center, Inc. (ASC), our goal is to make sure that this phrase becomes a well-known fact. It is our goal to make sure every individual has access to the interventions needed to provide them with the opportunity to reach their fullest potential. We are passionate in our role as treatment facility, advocate, and educator. We are dedicated to providing critically necessary, early intervention and life-long services to those with Autism Spectrum Disorders (ASD’s), and support and services to their families and caretakers. We strive to educate our communities about all aspects of autism and its treat-ability.

We are developing initiatives to address an unmet, ongoing need within our communities for autism treatment, therapy, support services, research and other assistance. While many of our initiatives are locally based, we also provide assistance on a national and international basis.

Autism touches the lives of millions and knows no boundaries. Whether you are rich or poor, close or far; ASC is dedicated to providing the no cost resources and assistance needed.

Check out the “About Us” section to learn more about ASC and our long-term plans. Also be sure to contact us if you have anything to share or ask!