A STORY OF AUTISM AND RECOVERY


The day our world fell apart came shortly before Christopher’s second birthday. His newly appointed therapist from Early Intervention, Luisa, sat with me on the couch while we watched him play quietly. Christopher lined up rows of plastic animals, ordered by size and kind. Smaller animals were grouped at the front of the line; baby tigers and hippos arranged head to tail, facing forward. As the line progressed, the animals gradually increased in size. The line ended with the largest of the bunch: the dotted leopard, the tiger with black and orange stripes. A ten-inch sorrel Clydesdale with large white hoofs stood tallest at the end. I suspected Luisa had been keeping something from me during her past few sessions with Christopher. This time I was determined to find out what it was. I questioned her repeatedly, and finally, reluctantly, she answered.

“I think Christopher has P.D.D,” she said. I asked her what P.D.D was. She responded with a perplexing monologue about the many forms of childhood developmental delay. My mind was spinning with confusion. What could this mean? After Luisa left, I sat alone at the computer and searched the Internet for “P.D.D.”

My screen filled with writing. Over and over again I saw the same word.

Autism.

The word hung there like a thundercloud. Images raced through my mind; children sitting in corners on old black fold-up chairs, their small bodies rocking furiously to a mysterious inner beat. Larger, older children with glazed eyes, hands flapping up and down in the air. That autistic man in the movie Rain Man, not able to love, or laugh.

It was unbearable to think of Christopher in this way, yet I kept reading. It didn’t take long before I understood the truth. Christopher couldn’t make any sounds. He spent hours playing with increasingly complex puzzles, flipping each piece in front of his eyes before placing it in its slot. He paged through the same books repeatedly, methodically. He treated other people as though they didn’t exist; he wouldn’t look into their eyes.

My son was autistic.

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Christopher was my first baby, born in the spring of 1996 in Newton, Massachusetts. He learned to crawl and walk as expected, but after the age of six months, Christopher stopped making sounds. My husband, Mike, and I assumed this was due to Christopher’s chronic ear infections, which we believed made it impossible for him to hear us. At twelve months of age, Christopher underwent surgery to insert tubes into his ears. The ear infections soon stopped, and we waited eagerly for Christopher to start talking. This never happened. We worried about Christopher’s lack of speech, but everybody we spoke to had the same advice: wait and give him time to develop. We were told that boys sometimes talk late. After all, our pediatrician told us, Einstein didn‘t talk until he was seven.

At eighteen-months old, a teacher in a toddler art class I attended with Christopher approached me with some concerns. She was worried about his lack of speech, and the fact that he didn‘t socialize or play like other children. Looking for answers, I read obsessively on the topic of child development. It didn‘t take long to realize that Christopher was atypical in many ways. Christopher couldn’t make sounds and spent hours lining up plastic animals, or playing with increasingly complex puzzles, flipping each piece in front of his eyes before placing it in its slot. He paged through the same books repeatedly, methodically. We asked the pediatrician for his opinion. He told us not to be concerned until Christopher was at least three years old. But our own instincts told us differently. Against our pediatrician’s advice, Mike and I took Christopher to be evaluated by a speech therapist, an early childhood specialist, and two well-known neurologists.

Like most parents, we harbored high hopes for our baby. In our dreams, we imagined Christopher as an adult: attending college, getting married, and having kids of his own. We simply assumed what any parent wants: the best future for our child. But soon after Christopher’s second birthday, everything changed. He was diagnosed with autism, a devastating neurological and biological disorder, deemed incurable. Overcome with shock and grief, we resolved to help our son in whatever way possible.

After the diagnosis, we became immersed in the churning waters of the autism culture. We stalked the experts persistently and demanded answers. What was said to us most frequently, with resounding finality, was that Christopher would be autistic for the rest of his life. He would never speak or learn normally. He would never be able to tell us his thoughts and dreams. He would not grow up to be a successful, independent adult. We were told to learn how to accommodate Christopher’s disability and, as one esteemed psychologist put it, “to plan for his care after our deaths.” We were told to accept our misfortune and grieve.

When we asked about treatments, the doctors were consistent with their advice. We should bring Christopher back for annual checkups, and when he turned three we should enroll him in a special education school. A few of the doctors noted that, as Christopher grew, he would likely become aggressive and possibly self-injurious. When that time came, we might have to consider a “residential or institutional setting.” We were stunned.

Each of the experts cautioned us against using “alternative therapies.” One renowned doctor from Boston Children’s Hospital cautioned not to try something called Applied Behavioral Analysis (ABA). He told us this type of therapy was worse than ineffective; it would turn Christopher into a robot — a child who would not experience or display any happiness or individuality. “It’s better to be autistic,” he said, “than inhuman.”

Before we could accept this dismal outcome for our son, we studied the medical literature ourselves. We delayed making any decisions until we understood all of the latest autism research and treatments. Mike’s uncle, a prominent surgeon at Johns Hopkins University Hospital, had access to the latest medical research and sent us all the autism studies he could find. We discovered more information in books and on the Internet. What we found surprised us.

After the earlier warning, we were understandably suspicious of ABA. But we quickly discovered a different picture than the doctors had presented. ABA was not a new intervention. We were surprised to find more than 550 studies about ABA dating back into the early 1960s.[1] In fact, early as 1981, ABA was identified as the most effective treatment for autistic behavior.[2] Since then it had been endorsed by many state and federal agencies, including the American Academy of Pediatrics, U. S. Surgeon General and the New York State Department of Health. In 1987, Dr. Ivar Lovaas from UCLA published a ground-breaking study which has since been replicated at sites all over the world. The study showed that children who were diagnosed with autism and who received an intensive program of ABA, starting around age two, had a nearly fifty percent chance of recovery. It’s interesting to note that these were children who received no medical interventions (such as special diets, supplements, detoxification, etc.).

ABA is a technique that uses the principles of basic human psychology as its foundation: behavior that is reinforced will increase, and behavior that is not reinforced (or negatively reinforced) will decrease. This is the basis of all human learning. To treat autism, ABA is used as a methodology to teach children the skills they need in order to speak, interact, play and learn. ABA therapists use an extensive, layered curriculum, starting with the basics: eye contact, imitation, and receptive language. The therapists then progress into more advanced areas: conversation and play skills, critical thinking and problem solving. In addition, ABA therapists work to reduce and eliminate negative behaviors such as arm-flapping and other forms of self-stimulation.

Mike and I chose to use ABA for our children, along with a host of other therapies that we believe enhanced our children’s outcomes. Today, we are convinced that the chances for recovery are even higher if parents combine a high-quality ABA program with the appropriate medical treatments for their child.[3] Most importantly, it’s clear that the earlier parents intervene, the better.

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Armed with copies of the studies, we returned to each of the autism doctors. Surprisingly, most were neither aware of, nor interested in, reading them. The others had heard of Dr. Lovaas, but dismissed him as “not credible.” We were gently told to face reality and whisked out of their offices. At the time, we had no idea why these experts, highly respected PhDs and M.Ds, were so uneducated about autism, and opposed to learning more. Now we can understand this phenomenon. Part of it stems from the fact that medical students spend very little time learning about autism and related disorders. Many are taught that autism is an incurable mental illness, even with all of the new information that is being published. This is reinforced by the fact that the official diagnosis is still defined in the Diagnostic and Statistical Manual of Mental Disorders. Today, it clear that autism is not a mental illness. We now know that autism is a complex bio-medical disorder relating to toxicity, and the body’s inability to remove toxins properly.[4]

In addition to the mislabeling of the disorder, there is a sinister underside to the autism culture. It took us a long time to uncover and understand the reasons behind this. Some of it can be traced back to money. If autism were thought of as a medical disorder with effective treatments that leading to a full recovery — doctors, health insurers and schools would be forced to cover the bill. Treating autism with the most effective and proven interventions (including both ABA and medical treatments) could easily exceed $100,000 per year, per child. Though this amount sounds like a large expenditure (and it is), it’s more cost effective to spend the money when the child is young and has a chance at recovery, rather than spending much more for a lifetime of government supported care.

Even when a family can garner the necessary financial resources, most children with autism today will not get the kind of treatment they need. This is due to a combination of factors: widespread misinformation, a scarcity of properly trained doctors and therapists, and the frustrating lack of early autism diagnoses, to name a few. As a result, it is almost impossible for most autistic children to recover.

The more Mike and I educated ourselves about autism, the more we believed there was hope for Christopher. We were especially moved by a lecture we attended by Dr. Temple Grandin, a self-labeled adult autistic. Dr. Grandin, an accomplished writer, university professor, and expert in animal science, didn’t start talking until she was three and a half years old. She communicated her frustration by screaming, chirping, and humming. In 1950, she was diagnosed with autism and her parents were told she should be institutionalized. Her mother refused to accept the doctor’s prognosis and provided Temple with an environment where she was constantly interacting and learning, a program similar to today’s ABA therapy. Temple’s first memoir, Emergence: Labeled Autistic (1996), tells her story of “groping her way from the far side of darkness” and credits early intervention with her successful outcome. Dr. Grandin has become a prominent author and speaker on the subject of autism because, in her own words: “I have read enough to know that there are still many parents, and yes, professionals too, who believe that ‘once autistic, always autistic.’ This dictum has meant sad and sorry lives for many children diagnosed, as I was in early life, as autistic. To these people, it is incomprehensible that the characteristics of autism can be modified and controlled. However, I feel strongly that I am living proof that they can.”[5] Listening to Temple, we began to visualize Christopher’s future — not one dictated by autism, but instead with a real possibility that Christopher could live a normal life. We knew this wouldn‘t come easily. Our lives would have to change significantly. We began a journey, unsure of where it would take us. We chose to pursue the best case scenario: a full recovery.

Based on our research, Mike and I designed a unique program for Christopher. It was composed of the most effective therapies we could find: a minimum of forty-hours per week of ABA and an array of medical treatments including: a diet without wheat or dairy, customized supplements and medications, and other treatments. We expected that these interventions would take a minimum of two to three years.

Mike and I knew that treating Christopher’s autism would be expensive. To fund his therapies, we sold our home and bought one that was less expensive. I quit my job as a software engineer in order to research and manage Christopher’s program full-time. Our lives narrowed, revolving entirely around autism. After just several months of treatment, Christopher began to respond. For the first time since he was a baby, he began to notice other people and could look us in the eye. He even began to make sounds.

Then the unthinkable happened. The disease struck again.

Our second child, Cierra, born nineteen months after Christopher, had exhibited none of Christopher’s learning problems. She was fascinated with people and interacted with both children and adults. She spent hours each day just watching us. By ten months, she was chattering away with her first handful of real words; dog, Mom, and the emphatic “no!” which she uttered so appropriately and deliberately that we never guessed she wouldn’t be talking even more within a few months.

But around her first birthday, Cierra’s words started to disappear. Gradually she said less and less, and then nothing at all. Worse still, at around the same time, she lost her ability to walk properly and began staggering around on one leg, walking mostly on her toes. She wouldn‘t look at us anymore. We could hardly believe this was happening. Again. At the age of fourteen months, Cierra was diagnosed with autism, one of the youngest children on record to receive an autism diagnosis. Just like before, none of the experts believed she could get better. Even worse, we were told that, though girls are less likely to have autism than boys, autism in girls was usually more severe.[6]

Pushing our fears aside, we moved the furniture out of my office and set up a second therapy room. We started Cierra on the same diet as Christopher, and made appointments for her with all of his doctors. Miraculously, we were able to secure an opening for Cierra in the same ABA program we used for Christopher, and she began right away; Cierra became the youngest autistic child they had ever worked with. Each day, at least six therapists would enter and leave our home, starting in the morning and ending late at night. Christopher and Cierra each had their own separate teams of therapists, and we held weekly staff meetings for each child. Weekends and weekdays blended together and every day was the same: therapy, special foods and supplements, and more therapy.

As Christopher gradually learned to make noises, we quickly realized that they all sounded the same; though it was clear that he thought they were different. After several consultations with a specialized speech therapist, we found out why. In addition to autism, Christopher had verbal apraxia, a motor speech disorder. Children with verbal apraxia have great difficulty planning and producing the precise, highly refined and specific series of movements of the tongue, lips, jaw and palate that are necessary for intelligible speech.[7] Most children with autism do not have verbal apraxia, and many children with verbal apraxia by itself never learn to speak at all. Now Christopher had an additional obstacle to overcome.

As with everything else, we tackled the apraxia quickly and aggressively. We started by adding a speech therapist to our ABA team. She created special pre-verbal programs every week that helped Christopher learn to suck, blow and move his tongue. For hours each day Christopher practiced these programs, eventually learning to make sounds, then words, though they all came out in monotone. Next, we hired a voice coach. Christopher received the same training as a professional singer, again incorporated into his ABA program. He practiced breathing and scales for hours each day. Eight months after Christopher was diagnosed with apraxia, he was articulating sounds within the normal range. He still had a long way to go, but he was talking, and we could understand him for the very first time.

Hearing Christopher speak words was spectacular, but still we hoped for more for him. The money we gained from the sale of our house soon ran out. We approached our school district for financial support to continue the children’s therapy. When this was not fruitful, we were forced to hire a lawyer and sue our school district to continue funding the children’s programs. After months of legal maneuvering and thousands of dollars spent on expert witnesses and legal fees, we were successful in forcing the school district to pay about half the cost of the children’s programs. Meanwhile, we did everything within our power to get money to cover the difference. We refinanced our new home and borrowed money from family. I found a job where I could work from home much of the time. Even so, when we look back on those years, we still cannot explain how we paid for everything.

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Three years after Christopher was first diagnosed, our lead therapist, Julia, sat Mike and I down one night. “You guys are done,” she said. “You need to let us go.” It was 2001; Christopher was five-years-old, and Cierra three and a half. We weren‘t sure if we were really finished, or what that meant. We took the children back to Dr. Castro, the psychologist who had originally diagnosed them. We asked him to run a full evaluation on both children. He hadn‘t seen them since their original autism diagnosis. A week after the evaluations, Mike and I came in by ourselves to hear the results.

“I have to say I’ve never seen anything like this,” said Dr. Castro. “The results are similar for both of your children, which make these findings even more shocking. We’ve looked at everything we could possibly test: language, articulation, social skills, play skills, eye contact, problem solving, motor skills…”

“And?” I said impatiently.

“And you should be very proud of whatever it is you’ve done with these children. They tested in the average to superior range in everything. They’re both indistinguishable from their peers in every way we can test.”

It was time for us to admit it: Christopher and Cierra had recovered.

Soon after Dr. Castro’s pronouncement we were advised by our ABA consultant, a well-known expert whom we trusted, to remove ourselves from the world of autism entirely. He told us to move away from people who knew of our children’s history, and not to talk about autism with anyone we met. Over the therapy years, we‘d come to know a handful of families with recovered children. Every one of them had moved to a new city after their child recovered, and they’d all advised us to do the same.

It was devastating to think about leaving the community we‘d grown to love, but we soon understood why so many had recommended we do so. We learned the hard way about the “autism stigma” — that even the best-intentioned people will treat a child differently if they think of them as autistic. The root of this behavior stems from the myth that autism isn‘t curable. In a small town where everybody knows everybody else, we came to the realization that it was not possible to erase our children’s past, and living there meant a lifetime of bias against our children.

We packed up and moved to California — a place where we could be near family and start fresh. That fall, Christopher started in a public kindergarten and Cierra in a local preschool. The children’s teachers knew nothing of their past history. We waited nervously to see what would happen. Months went by with nothing but positive reports. Christopher quickly made a best friend who is still his best friend today. Though the children were thriving both academically and socially, adjusting to life without ABA was challenging for Mike and me. Over the “therapy years” we‘d become close with many of the children’s therapists, and we relied on them for advice and counsel. Now we were on our own, making decisions that once had been analyzed by a series of experts. For the first time, we were experiencing life in the same way as most other parents.

EPILOGUE

In 2003, after having two more children who developed normally, we were blessed with our fifth and final child — a boy named Cameron. Shortly after his first birthday, Cameron began to regress, losing the words he’d already learned and his interest in others. To hear Cameron’s diagnosis of autism at eighteen months was crushing, of course. But we knew exactly what to do. We began right away and replicated the other children’s treatment exactly. Less than two years later, Cameron was no longer considered autistic and his diagnosis too was removed.

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People sometimes ask me if I know what caused my children’s autism. Could it be genetics? Vaccines? A family history of the disease? The fact remains that nobody knows with certainty why autism occurs. We do know, however, that autistic children are born with a genetic pre-disposition to the disease, and are exposed to environmental toxins that trigger the disease. Even though my husband and I have no family history of autism, there is clearly a genetic component in our children’s autism; the fact that three of our five children were autistic shows this to be true. Additionally, my sister’s son is autistic, confirming a genetic link on my side of the family.

There is still much debate over what the environmental triggers for autism might be. Vaccines and the preservatives contained inside them have been widely considered, but scientists have yet to prove a direct correlation. In our case — Christopher was vaccinated, Cierra received her first few vaccinations and Cameron received none. Yet, all three became autistic. With so much left unknown, Mike and I chose not to focus on the cause of our children’s disease. Instead, we put all of our energy into the children’s treatment and recovery.

According to the Centers for Disease Control (CDC), 1 in every 68 children is diagnosed with autism, making it more common than childhood cancer, juvenile diabetes and pediatric AIDS combined. An estimated 3.5 million individuals in the U.S. and tens of millions worldwide are affected by autism. Government statistics suggest the prevalence rate of autism is increasing 10–17 percent annually. Given these statistics, it’s hard to find anyone who is not touched in some way by autism — whether a family member has the disorder or they know somebody who does. Most children who are given the diagnosis of autism receive it too late for appropriate early intervention and are virtually guaranteed a life of severe disability. Those who are lucky enough to be diagnosed early (ideally before the age of two) are still not usually provided with adequate treatment. Why is this? The most obvious reason is shortsightedness and a lack of knowledge within our medical profession, government and early childhood professionals. It’s easier for them to not take on the monstrous expense and dedication that the recovery of an autistic child demands. It’s easier to put blinders on and to blame somebody else, or to deny that it’s even possible to recover. It’s easier for a parent to put their faith in the professionals they trust, until they realize they’ve made a mistake and it’s too late to fix it. I’ve known countless families in this heart-breaking situation.

Catherine Maurice, author of the seminal autism memoir Let Me Hear Your Voice, wrote: “Yes, aiming for and achieving recovery from autism is expensive. So is chemotherapy. So is a lifetime of state-supported custodial care. Why would we not attempt to recover anyone from cancer, or autism? No, we cannot guarantee a cure or recovery for everyone, but is that sufficient reason to lower the bar? Do we start deciding how many people should have access to science-based treatments for cancer? Do we start deciding how many children should have access to ABA?”[8]

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Our story is not about a magic formula, or one single approach in treating our children’s autism. Rather, it’s about a lot of failures followed by learning and change, and an acute awareness of the unique needs of each of our children. Mike and I established our core philosophy early on: we’d try any intervention that had scientific backing and wouldn’t hurt our children. We scoured the research and used the data as our guidepost. If something worked, we did more of it. If it didn‘t, we stopped. We brought in experts from all over the country, and were never satisfied with only one opinion. If our children failed to respond, we learned more and tried harder. We worked only with people who were as dedicated to helping our children as we were, and rejected all others.

Mike and I don’t claim to have discovered the cure for every child with autism, but we have learned how to cure our children. For us, it was not a magic potion but a persistent quest for information and interventions that could reverse what would have been a dismally limited future for them. Through our story, we wish to give hope and direction to those families struggling every day with autism and related disorders. We believe that every child touched by this bewildering and potentially catastrophic disease deserves a real chance for recovery and the most fulfilling life possible. Don‘t we all deserve that?

[1] Charles Ferster, Ivar Lovaas, Montrose Wolf and Todd Risley are some of the best known early ABA researchers. [2] See the literature review by Marion K. DeMyer, J. Hingtgen and R. Jackson. [3] I believe the best medical protocol for autistic children is the DAN protocol described eloquently in Autism: Effective Biomedical Treatments by Jon Pangborn and Sidney MacDonald Baker. [4] Changing the Course of Autism, by Bryan Jepson, M.D. [5] Emergence: Labeled Autistic, by Temple Grandin (1996). [6] Autism prevalence is 4 to 5 times higher for boys than for girls (CDC, 2009) [7] Understanding Apraxia: A Brief Overview of Language and Approaches to its Assessment by Thomas Powell, Ph.D., CCC-SLP. [8] Maurice, Catherine (2001). Leadership Perspectives in Developmental Disabilities, Volume 2, Issue 4.