The Women's Freedom Network Newsletter March/April, 2001, Vol. 8, Number 2. Autism, Motherhood, & the Life of the Mind by Laurie Morrow, Ph.D.

M y nineteen-year career as an English professor ended suddenly, last summer, on the sidewalk outside my son's special education preschool class. A teacher's aide in my son's class grabbed my elbow and escorted me to my car on a pretext. "I could lose my job for telling you this, "she whispered, near tears, "but don't bring him back here!"

Our three-year-old son, Ned, was attending a public school program for special needs children which had been highly recommended to us. We had been optimistic about finding a good public preschool program, as the year before, shortly after Ned's diagnosis, we had enrolled him in a remarkable public program for special needs children, aged birth to three. The staff at this preschool-the Goldman School of C-BARC, in Shreveport, Louisiana had been models of loving professionalism, and under their talented care our son had made substantial progress. Our experience with Goldman had been so thoroughly positive that, like most parents of children with special needs, we had no concerns about his making the transition from his 0--3 program into public preschool, especially as we had carefully researched the schools beforehand.

Before the aide spoke with us, we believed that the new elementary school full of smiling teachers was giving our son the best education he could get. But they weren't. Unfortunately, for legal reasons, I cannot enumerate our concerns, nor the incidents that convinced us he was being mishandled. But we believed we now understood our normally sweet and cheerful little boy's recent descent into somber days and scream-filled dreams.

A teacher's aide in my son's class whispered, near tears, "I could lose my job for telling you this, but don't bring him back here!" We believed we now understood our normally sweet and cheerful little boy's recent descent into somber days and scream-filled dreams.

For over a quarter of a century, I had dedicated myself to the life of the mind, struggling to become a successful scholar and author, public speaker, and tenured professor. I had labored to win awards--teaching awards, awards for scholarship, for creative writing, even a journalism award-- and delayed having a child until my position as an intellectual was secure. My becoming a senior, tenured full professor was driven partly by vanity, but partly also by pragmatism: I have known poverty, and a reprise of want and fear, and what Dr. Johnson describes as "the humiliation of duns" holds no romance for me.

But now, such fears were irrelevant. My only goal became what it should have been all along: to secure for Ned the specialized education that is his only chance of not ending up locked away, alone and silent, in an institution, after his father and I pass away.

Remaining in the state where I had so carefully constructed a career and where we had recently bought a beautiful house was not an option. Merely changing schools or school districts would not solve the problem, for we had already done both. And my son's window of opportunity was closing fast: for children with his disorder, the greatest gains are made prior to the age of 6. My son's was, at this point, almost 4. The year we had spent since his time at the Goldman School had, in our opinion, been wasted.

Neither public school we had tried had been equipped to deal with my son's disorder, despite the fact it is now more common than Down's Syndrome. My son has Autistic Spectrum Disorder, a broad diagnostic category which includes Pervasive Development Disorder (my child's specific diagnosis), Autism, Rett's Syndrome, and Asperger's Syndrome. Children with different types of Autistic Spectrum Disorder manifest arrays of differing symptoms, yet share some common characteristics, most obviously severe communication disorders and difficulty with social situations. They often do not try to include others into their worlds by pointing or gesturing. Even making eye contact with other people -- an important aspect of social functioning -- can offer these children an intolerable sensory overload. Many are horribly hypersensitive to sensory stimuli -- or hypo-sensitive, like my son, who presses his small ear against the dishwasher or a vibrating toy, desperately seeking auditory stimulation because normal sensory input is insufficient.

More obvious, and, for a parent, even more troubling are the problems with expressive language. Many children with ASD are (like my son) both bright and nonverbal. Many can understand most, if not all, of what you say, but cannot motor plan words properly to respond. Those who are verbal often employ language in curious ways (echolalia, for example, wherein they repeat questions addressed to them rather than answer them). Typically, children with ASD do not instinctively imitate adults, and thus miss out on one of the chief means by which children learn. They do not play imaginative, "let's pretend" games.

The need for special education teachers trained specifically to teach children with ASD is immense and unfortunately, growing. Twenty years ago, Autism was a rare disorder. In the past decade, however, the incidence has skyrocketed. According to the Center for Disease Control and Prevention, the incidence is now 1 in 500, exceeding the incidence of Down's Syndrome.

What has caused this sudden rise? First, a disclaimer: I am not a physician. I am, however, a fairly sophisticated researcher, and, despite frequent denials by medical professionals, remain persuaded that the condition is triggered by the MMR vaccine, in which three vaccines are administered at once, typically given around the child's first birthday. There appears to be some genetic predisposition for this condition, but the presence/absence of this genetic factor cannot be predicted. (There is no Autism in either my husband's or my family.) There is, apparently, no medical benefit to giving three vaccines at once; it is done simply for convenience. Please research this controversial vaccine carefully before consenting to its being given a child.

Twenty years ago, Autism was a rare disorder. In the past decade, however, the incidence has skyrocketed to 1 in 500, exceeding that of Down's Syndrome.

Among the things for which I thank God most fervently are the research skills I developed as an academic. I was able to conclude that, for my son, as for many children with ASK, the most successful teaching method would be "Discrete Trial Learning." (Also called "Applied Behavioral Analysis.") This method addresses the common, specific problems of Autism, such as lack of focus and imitation, by breaking skills into minute, "discrete" units which the child acquires through drills. Grim though this may sound, in practice -- done in the right spirit, by well trained professionals -- it looks and feels to the child like play with a somewhat stubborn playmate.

After the aide spoke with me, I prayed to Mother Teresa, who has always answered my prayers about Ned, to help me find a place where my son would receive what he needed. DTL programs which provide the 30 hours a week my son needs are rare and generally expensive, and we are people of increasingly modest means. Through a series of small miracles, in September, 2000, my research led me to Kathy Andrews, a Special Education Technical Advisor at the Vermont Department of Education in Montpelier, Vermont, who told me about the Central Vermont Autism Collaborative. The Collaborative was conceived by Ed Sbardellati, a Ph.D. in Special Education who became aware of the skyrocketing numbers of Autistic children, and frustrated by the lack of services for them. After years of researching Autism and working with children with ASD, Ed designed the administrative and educational structure for the Collaborative and found a way to fund it. The program is funded 60% through Medicaid and 40% through the child's local school district. The "wraparound" administrative and organizational structure of the Collaborative is a genuine work of genius. This successful plan is currently being replicated in Burlington, Vermont and I hope to help popularize and replicate it across the state and the nation. (We had, by the way, also looked into private schools for children with ASD. Pre-K, non-boarding tuition ranged from $48,000 - $60,000 a year, far more than our family could afford. But it didn't matter that we couldn't afford this, as neither school had any openings.)

Five days after learning about the Central Vermont Autism Collaborative, we bought a house in Vermont. We moved here in November. My son started his Discrete Trial program in the refinished basement of our Montpelier home on January 2, 200 1, at the age of 4 1/2.

Four different DTL trainers work with him daily, for a total of 27.5 hours of training each week. The sessions are filled with outdoor play and snack breaks, so Ned is never bored or overwhelmed. When he has trouble with a drill, his trainers switch off, briefly, to something he can do, so his experience is as positive as possible.

Ned loves these sessions -- Todd, Wendy, Sarah, and Jessica are four gifted, loving people, and Ned adores them. When he sees his trainers, Ned races happily downstairs ahead of them, often grabbing their hands and pulling them downstairs to his "classroom." Ned's DTL program drills are well organized and his performance carefully recorded, so at any given moment we know how many times he has attempted a drill and with what degree of success. Charts are kept of (happily, rare) inappropriate behavior. If behavioral problems arise, the Collaborative includes the services of founder Ed Sbardellati, who is an excellent behavioral psychologist.

Two mornings a week, Ned also attends an excellent, public Essential Early Childhood Education program organized by Fran Solin, a delightful woman who was working on her Ph.D. in English when she realized her true passion was Early Childhood Education. There, by participating in charming and delightful activities (such as "Night Day", when the kids come dressed in pajamas, with flashlights and blankets, hear a "good- night" story, pretend to sleep, then have a pancake breakfast) Ned learns to tolerate and, eventually, to play with other children. There, too, he receives speech, occupational and physical therapy. Each of these people knows our boy's strengths and weakness, and he is treated by all with dignity and affection.

" Among the things for which I thank God most fervently are the research skills I developed as an academic."

Once a week, the trainers and three supervisors (educational, administrative, and coordinating) meet with us in our home for an hour to discuss Ned's progress during the past week. Also, once a month, the DTL supervisors meet with us and with the specialists who work with Ned at his Essential Early Childhood Education program.

Through an insightful and creative amalgamation, of a variety of funding sources (state, federal, and grant), Vermont -- a sparsely populated, not overly wealthy, rural state -- is able to offer Ned opportunities heretofore unavailable to him. Always and everywhere, he is treated with respect and affection, by professionals who believe he has enormous potential and who are eager to help him achieve it.

My son is happy again. The nightmares disappeared within a month of our moving to Vermont. He loves his trainers. When they come to the house each day, he runs to the door to greet them and clings to them when they have to leave. And, after three and a half weeks in the program, my silent boy who had never even said "Mama" spoke his first phrase. His DTL trainers had told him that playtime had ended, that he needed to sit back down at his table for more drill time. Ned, who was having a bang-up time on his rocking horse, looked over at them and said, clear as a bell, "Ned MAD!" They laughed and praised him and soon he was back at the table, happily learning to imitate. There is life in that wonderful little mind.

So the meaning of what constitutes the "life of the mind" has changed utterly for me. I am, of course, no longer a professor, and, at 47 unlikely ever to be one again. Our savings are evaporating steadily. This financial uncertainty would have devastated me a year ago. Now, however, I am looking forward to growing the small business I have started out of my home, as a freelance grants-writer and consultant. Let the Deconstruction workers toil: Shakespeare and Milton will survive them, and more, without the aid of this English professor. For me, the life of the mind is no longer merely the contemplative retreat of the scholar, but an active and joyous encounter with a world of new challenges and new hope.