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THE ADHD AUTISM CONNECTIONA STEP TOWARD MORE ACCURATE DIAGNOSIS AND EFFECTIVE TREATMENT
By DIANE M. KENNEDY WITH REBECCA S. BANKS | PAUL T. ELLIOTT, M.D., & CARL DAISY
WaterBrook PRESSCopyright © 2002 Diane Kennedy
All right reserved.
Chapter OneA Mother's Mission
What's the Big Deal About This "Connection"?
The real voyage of discovery lies not in seeking new landscapes, but in having new eyes.
I live in a laboratory. My three children are walking, talking examples of the fascinating yet little-known ways that attention deficit disorders (ADHD) and autism are related.
ADHD is classified with disruptive behavior disorders in the Diagnostic and Statistical Manual of Mental Disorders, Fourth Edition Text Revision, 2000, which I'll refer to in these pages as the DSM-IV-TR. Although ADHD is considered the leading developmental disorder of childhood, it is the most controversial and misunderstood of all psychiatric disorders. "No mental disability this decade has been assailed by as much criticism, skepticism and flat out mockery as ADHD," said Matthew Cohen, president of Children and Adults with Attention Deficit Disorder (CHADD). Nevertheless, hundreds of thousands of children and adults are diagnosed with this disorder each year.
As for autism, researchers and physicians currently use the term "pervasive developmental disorder"(PDD) to refer to a group of related disorders that includes autism, Asperger's syndrome (also called "Asperger syndrome" or "Asperger's disorder"), and pervasive developmental disorder-not otherwise specified (PDD-NOS). These disorders are broadly categorized as pervasive developmental disorders because they manifest in a child's social, communication, and behavioral development.
It is a considerable advancement in autism awareness that Asperger's syndrome has recently been identified as a subtype of PDD. It is milder in degree than autistic disorder as defined in the DSM-IV-TR and, as you will see, shares an amazing number of similar characteristics with attention deficit hyperactivity disorder (ADHD).
What began as my desperate attempts to find help for my sons has ended up as a mission-a mission to increase awareness about the similarities between ADHD and autistic spectrum disorders, especially Asperger's syndrome, and thereby facilitate more productive dialogue, more accurate diagnoses, and more effective treatment for children affected with these conditions. My journey has been like that of a warrior with battles of ignorance raging all around me. In raising three sons with various degrees of developmental disorders, I have debated the definition and treatment of their conditions with the experts and have struggled with educators who didn't understand. As a mother, basic training wasn't optional. I had to face combat ready or not. So, armed with a mother's intuition and my Christian faith, I set out to prove something I'd come to suspect as each of my sons was diagnosed with varying degrees of ADHD: There had to be a better answer than "hyperactivity," "inattentiveness," or "impulsivity" at the root of their difficulties. These labels left too much unexplained.
Consequently, I've spent the last seven years discovering what every parent of a child with ADHD should know: ADHD and Asperger's syndrome are closely related disorders. They may even fall in the same spectrum, along with autism and pervasive developmental disorders. However, until now, no one has examined the overwhelming similarities between ADHD and Asperger's syndrome. Instead, researchers and clinicians from both ADHD and autism have focused upon the differences between these two disorders. I have come to believe that this focus upon the differences, to some extent, is fostered by the paradigm of isolation practiced in the scientific community. That is to say, research is a fairly isolated pursuit, and when we refer to research that takes place in two apparently unrelated fields, then the chances that these researchers have shared information are slim at best.
Nevertheless, it is my hope that the information in this book will open new areas for dialogue, research, and treatment between the fields of ADHD and autism. Even more important for parents of children with attention deficits, autism research offers a biomedical view rather than a strictly behavioral approach usually taken by ADHD specialists. With recent advances made in neurobiology; genetics, nutrition, and cognitive research, autism research presents a more complete view of what is now considered ADHD, especially in terms of causes, symptoms, diagnosis, and treatment. Current ADHD research still focuses on controlling the impulsivity; inattentiveness, and hyperactivity associated with the disorder, even though, as you will see in chapter 5, these behaviors are simply symptoms of the underlying disorder and not the disorder itself.
But I am jumping ahead. Let me begin at the beginning.
How I Encountered the Connection
My initiation to ADHD came through my middle son, Ben. Ben is truly what experts call a textbook case of ADHD, if there is such a thing. A happy but busy child, he didn't run into any trouble until the first grade when we realized he wasn't learning. The teacher insisted Ben's lack of progress was because he wasn't motivated. However, we feared retardation, because Ben couldn't hold a fork or tie his shoes even though he was six. When his school delays resulted in a diagnosis of ADHD as well as an extremely high IQ, I was momentarily relieved. After all, ADHD accounted for his delayed social and motor skills.
The relief I felt is common to many parents whose children have just received an ADHD diagnosis. I truly believed that the diagnosis would lead to answers and solutions. Instead, it led only to medication.
As is common even today, the experts recommended we treat Ben's condition with Ritalin. My husband, Tom, and I resisted this until I'd done enough research to discover there was really no other treatment option. After we gave Ritalin a try, Ben seemed to calm down almost immediately and moved into his school's advanced education program.
He still struggled with motor-skill problems and maintaining friendships, but these didn't frustrate him as much as when he wasn't on medication. So for us, Ritalin seemed a success.
During this time I came to believe much more could be done for people with ADHD, so I joined CHADD. As a parent advocate, I immersed myself in local and national conferences on ADHD and read every bit of research I could. At that time all of the literature focused upon people who exhibited hyperactivity along with inattentiveness. Soon, however, the portrait of a person with ADHD changed to reflect children more like my oldest son, Jeff, who was inattentive but not hyperactive. This newer subtype was just emerging in ADHD research.
Unlike Ben, Jeff performed well in school during his elementary years. He was by all accounts a happy, bright student. Consequently, due to our preoccupation with Ben's difficulties, my husband and I failed to see that Jeff was having more and more trouble keeping up. We reasoned that some of Jeff's difficulties stemmed from his entering middle school. We accused him of being unmotivated and lazy, unlike his brother Ben, who had a disability. It was difficult for Tom and me to see Jeff any other way at this stage. He and Ben were nearly polar opposites. Ben had always lagged behind developmentally; Jeff had always developed ahead of schedule. Where Ben had been easygoing as a baby, Jeff was much more demanding, self-sufficient, and bossy. And though Ben had his share of social troubles, Jeff made friends easily and was a natural leader. So it was hard for Tom and me to understand what was happening to Jeff.
My firstborn moved into first place for my attention when his teacher called to report Jeff was isolated, depressed, and unmotivated. In many ways he resembled the newer portrait of ADHD that had recently emerged in the research-that of learners who internalize their inattentiveness rather than acting out on it. These people tend to be dreamers who have less-defined attention deficits and who become hyperfocused and hypoactive rather than hyperactive. Jeff tested ADD with no hyperactivity, giving me another way of viewing this syndrome.
I began to consider ADHD and ADD as something like a cold virus. In one person the virus is manifested as a head cold, in another as a chest cold. This is what it seemed like with attention deficit. At first the researchers said, "It's hyperactivity-we have it figured out." And then, "No, maybe not exactly. It's also hypoactivity. Well, actually it could be both."
As a mother who had closely followed the ADHD research for five years, I thought I understood what ADHD really was, especially since I had two textbook cases of the ADHD syndrome in my home. However, I quickly discovered that my journey with ADHD had only begun. With the birth of my third son, Sam, it would soon cross over into areas of autism research.
By age three, Sam was diagnosed with severe ADHD as well as oppositional defiant disorder (ODD). The doctors told me that his ADHD was "the worst case we've ever seen," and they explained his extreme antisocial behavior was intentional and willful, hence the ODD diagnosis. To complicate matters, we were told that Sam was highly gifted with a genius IQ. Yet raising a genius with the worst case of ADHD ever seen didn't make me want to start planning for Harvard. I simply wanted Sam to be able to complete kindergarten with a measure of peace.
Where Ben's social difficulties led to his having problems making friends, Sam's behavior led to more extreme isolation. He would have numerous temper tantrums, bite other children in the back while they quietly waited in line for the rest room, disrupt class, and refuse to go to gym if he couldn't be line leader for the twelfth week in a row. And while I couldn't deny that these behaviors looked like behaviors of a strong-willed child who challenged authority, something just didn't seem to fit his diagnosis. Many times, Sam actually got along better with adults in charge than with his peers. As I examined his behavior more carefully, I concluded that Sam's tantrums weren't in response to being told what to do; they occurred in response to some change in his environment or routine.
Another characteristic I noticed about Sam was his extreme sensitivity to sensory stimuli. He never looked at me directly, and getting a kiss out of him was like negotiating a peace treaty. I never got spontaneous hugs or kisses, only "deals." Likewise, anytime I would put him into the shower he would throw an extreme fit as if he were in some sort of pain. Yet all of the ADHD research left me more confused about Sam's diagnosis. Impulsivity, hyperactivity, and inattentiveness did not begin to address the complexity of Sam's behavior. Plus the medications were having little effect on him.
At this point my intuition told me there was more to be discovered, even though the doctors assured me that Sam's ADHD was the central disorder. Yet, as a mother, I simply did not know where to look for more research to explain my son's difficulties. I continued to immerse myself in ongoing ADHD research in the hope of helping Sam.
Finally, at a national ADHD conference, I met Dr. Paul Elliott, a physician dedicated to treating individuals with ADHD and aiding their families through education. I boldly approached him with some questions about medication during a break between sessions. Specifically, I wanted to know why Ben and Jeff had responded so well to medication, whereas Sam experienced little relief. I described Sam to Dr. Elliott, who explained that the horizon of ADHD is usually broadened to subsume cases like Sam's. In other words, when a patient presents symptoms that fall to one extreme or the other in ADHD-that is, explosive and in-your-face, or silent and withdrawn-the definitions expand to compensate for these types. What has emerged from this approach are numerous subtypes of ADHD.
Around this same time, I met a mother named Joni who ran CHADD's state council and who had a particular interest in tough cases like Sam's. She had done some research on autism and urged me to do the same. Autism? I thought. She must not have understood. My son is not an idiot savant. She must not have heard me say that heal had no language delay I pictured a child spinning or rocking, totally uncommunicative and unresponsive. Still, she guided me to some basic facts about autism that changed forever my views of my son's diagnosis.
Joni showed me a simple checklist of behavioral problems commonly associated with autism, especially Asperger's syndrome. The checklist described my son's behavior completely, yet I would never have found this checklist in any ADHD research. Imagine my sense of urgency as I set out to track down any and every overlap between ADHD and autism. It wasn't long before I felt the relief that comes from knowing that my child and I were not alone and that he was not the "worst case ever seen." In fact, I soon discovered Sam's verbal abilities placed him at the mild end of the autistic spectrum. However, the challenge and frustrations of obtaining an accurate diagnosis for Sam paled in comparison to our experience in obtaining an ADHD diagnosis. The autism guidelines are more stringent and exacting than those of ADHD. There is also much less room for subjective opinion. Instead, autistic spectrum diagnoses rely more fully upon direct observation from clinicians.
Through Joni I met a researcher who frequently taught educators about autism. This researcher almost immediately spotted Sam's autism. Although she was not in a position to give a formal diagnosis, she encouraged me to pursue that and referred me to a more qualified coworker. I assumed the diagnosis would be a mere formality. I never imagined that someone familiar with autism would not see the symptoms in my son. Nevertheless, according to this psychologist, Sam did not meet enough criteria to be placed on the autistic spectrum. Imagine my disappointment in still not having reached a firm answer regarding Sam's condition.
To make matters worse, this physician recommended putting Sam on antipsychotic medications. These would sedate him far more than Ritalin. His reason for such extreme measures? He believed that because Sam's IQ levels were so high, we needed an outside force to "control" or contain him in ways that would make society feel "safe."
Outraged at such fear-based and extreme measures for containing rather than treating my child, I reviewed line by line the behaviors in Sam's evaluation sheet that could be found in the volumes of literature relating to Asperger's syndrome and PDD. Refusing to be discouraged in my search for help, I persevered.
A different psychologist who had served as one of my professional advisors told me of an expert, Dr. Peter Tanguay, who had spent over twenty years researching autism and who had been the technical advisor for the movie Rain Man. I called him immediately. He calmly asked me why I believed my son has autism.
"Because I gave birth to Data," I blurted out, referencing Temple Grandin's comparison to an android from Star Trek. "I also married Spock," I exclaimed, unleashing years of frustration with a single statement. "Last night I had the same argument I've had with my husband one thousand times. He can't put himself in my shoes. He just doesn't get two-way social interaction. So I told him to get a dictionary, look up this word and then write it, memorize it, do whatever it takes to understand it."
"What was the word?" Dr. Tanguay asked.
"EMPATHY!" I nearly screamed.
Fortunately, Dr. Tanguay was in the mood to listen to a frantic, frustrated mother. He invited me to his office that very afternoon.
Tom accompanied me to the meeting for the autistic diagnostic interview, which usually lasts two hours. Ours lasted four! You see, when Dr. Tanguay would ask specific questions about Sam's behavior, Tom often replied, "I'm not so sure about him, but how did you know that about me?" Later, Tom confided in me that he had never felt so understood.
Excerpted from THE ADHD AUTISM CONNECTION by DIANE M. KENNEDY WITH REBECCA S. BANKS | PAUL T. ELLIOTT, M.D., & CARL DAISY Copyright © 2002 by Diane Kennedy
Excerpted by permission. All rights reserved. No part of this excerpt may be reproduced or reprinted without permission in writing from the publisher.