Pervasive Developmental Disorder (PDD) is a dauntingly vague term for a
spectrum of autistic-like behaviors that psychiatrists have been struggling
to characterize for years. But for parents of children with PDD, and for
adults who have long faced the challenge of their "differentness" without
benefit of diagnosis, reading
Pervasive Developmental
Disorders: Finding a Diagnosis and Getting Help, by Mitzi Waltz,
will be an "Aha!" experience.
PDD is sometimes called Autistic Spectrum Disorder (ASD); autism accounts
for one-third of the cases, and most people with PDD have at least some
autistic traits, such as difficulty with social and emotional interaction,
repetitive behavior, and language dysfunction.
The news is that PDD is on the rise. In California, according to the
California Department of Developmental Services, autism is up 273 percent
over the last 11 years. PDD types including the category "Not Otherwise
Specified" (PDD-NOS) that is the particular focus of this book have risen
by nearly 2000 percent-astronomical even given the increased awareness of
the disorder that probably accounts for some of the rise.
Profound personal experience often makes for the most compelling literature
on a subject. At age two Waltz's son Ian communicated "with grunts and
shrieks, and only occasionally sounds that resembled words...He was clumsy,
constantly banging into furniture and falling, often with no sign of pain,"
wrote Waltz, adding the poignant words so many PDD parents have voiced: "We
loved our little boy, but we knew something was not quite right."
Pervasive Developmental
Disorders, however, is not a personal narrative. It is an
exhaustively researched and referenced handbook for families and individuals
coping with PDD. It walks us through the process of diagnosis; negotiation
with health care and school systems that may not be well educated about PDD;
early intervention and the various therapies; and dealing with finance and
insurance. There's a "crash course in basic neurology" geared to non-technical
readers, and advice born of personal experience, like her "Semi-sneaky tips"
on getting around voice-mail barriers, staying calm, and using humor to get
through the bureaucracy.
An appendix lists books and web resources for both adults and children with
PDD, along with resources on general disability, health care and insurance,
parenting, special education, and the many kinds of therapy.
"I wanted to write the book I needed when Ian was two years old," said Waltz.
As such, said editor Linda Lamb,
Pervasive Developmental
Disorders is in the O'Reilly tradition of "people who have gone
through hell trying to figure out what's going on and have then written a
book about it."
Waltz is a technical editor with a degree in journalism, a background in
investigative writing and research, and a lifelong interest in science and
health. She is finishing a book on bi-polar disorder and researching one
on obsessive compulsive disorder. She is the mother of Ian, now 8, and
Carmen, 17.
New research on autism and PDD is focusing on finding biological markers
for the disorders. Genetics plays a role in susceptibility, but other
factors may be involved. For instance, researchers have recently linked such
PDD-related behaviors as obsessive compulsive disorder and Tourette's
syndrome with ordinary strep infection. "It's a reaction to strep
antibodies," said Waltz, and it points to another PDD characteristic: a high
frequency of autoimmune disorders, which in turn appear to be on the
increase.
Symptoms of PDD-NOS are so varied that getting a correct diagnosis is a
big hurdle. Furthermore, interventions that work for one child may actually
hinder another's progress, pointing to the probability that PDD has a
variety of genetic and environmental origins.
It's important to find the right doctor and to get a multidisciplinary
evaluation, according to Waltz. Pediatricians are not equipped to recognize
PDD. "It's not up their alley," said Waltz. "They're busy treating strep
throat." Referrals must be made carefully. "Neurologists in particular are
often not interested in or aware of PDD." Case studies abound in which
patients suffered through a series of diagnostic attempts ranging through
"cerebral palsy," "psychotic disorder," "borderline intellectual
functioning," developmental delay," and the all-purpose "give him time,
he'll grow out of it."
Waltz recommends finding knowledgeable local resources with the help of the
Autism Society of America or the
Autism Research
Institute.
Although each person with PDD is unique, and differences from the norm
can be subtle, there are some common threads. "Communication difficulties
are often the first things parents notice," said Waltz. There may be
physical problems such as clumsiness and unusual actions. Many PDD children
are inordinately sensitive to stimuli such as sounds, smells, or the feel
of stiff new clothing.
Children with PDD often find social interactions so confusing that they
cope either by withdrawing or by being aggressive. But most are capable
of warmth and affection.
"People have the idea that autistic kids don't have a relationship with
anyone," said Waltz. However, all but the most severely autistic children
are capable of relationships--especially with their parents. Parents
instinctively or through diligent research tend to figure out what throws
their children off track. Carefully designed behavior modification
interventions and medications have been effective in widening the social
and emotional world of those with PDD.
Waltz hopes for continuing research into behavior modification techniques
such as applied behavior analysis, which may actually work to retrain
brain circuitry, and into more precise medications and dosages for children
with PDD.
What parent has not wondered if a child's problems are the result of bad
parenting? The older literature laid heavy blame for autism on parents,
but here there is reassurance and evidence that these disorders are not
caused by poor parenting, abuse, or economic deprivation.
Meanwhile, some question whether the term "disorder" is altogether
appropriate, given the unusual talents of many people with PDD. Waltz's
father, for instance, was a successful engineer even though he was
eventually diagnosed with Asperger syndrome, a PDD characterized by the
narrow and focused analytical ability that often leads to brilliant
accomplishment in computer and engineering fields.
"Many adults with autism are offended by the idea of a cure," Waltz said.
She cites
the
work of Dr. Temple Grandin, and Jim Sinclair, author of Don't
Mourn for Us. It's been proposed that Albert Einstein had
autistic traits.
For anyone grappling with PDD, says Waltz, research and contact with others
are essential. "There's a temptation to withdraw from the world and focus
on your kid--you have to get out there and seek out other families. You
quickly find out you can't do it on your own."
Pervasive Developmental
Disorders is a good place to start.