Chapter One
A Mother's MissionWhat's the Big Deal About This "Connection"?
The real voyage of discovery lies not in seeking
new landscapes, but in having new eyes.
Marcel Proust
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 thedifferences 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.
Continues.
