July 13, 2003
For more details
Visit the Autism Society of America's Web site at www.
autism-society.org. To learn more about local resources and services
for people with autism, visit the ASA Oakland County Chapter's Web
site at www.asaoakland.org.
There are few more frightening things parents can hear than that
their child has been diagnosed with autism.
And that is something more and more parents are hearing, nationally
and in Oakland County. The Autism Society of America reports a 172
percent increase in cases of the developmental disorder in the past
decade. In Oakland County, the number of students placed in special
classrooms for the autistic has risen by more than 400 percent in
those years.
There are variations in severity - but most experts agree there is
no cure. Generally, children with autism will never learn, achieve
and communicate as other children do. Their parents often face a
lifetime of physical, intellectual and emotional demands.
"It's very, very, very stressful," said Vicky Debold, an assistant
professor in the School of Nursing at the University of Michigan.
A Royal Oak resident and the mother of a 6-year-old son with autism,
she has learned first-hand how taxing the disability can be. The
worries about the health, safety and future of these children never
stop.
"As a nurse and a practicing clinician for 25 years, I was familiar
... but I know now that this is what parents of children with autism
deal with all the time."
Seeking answers
Though the cause or causes of autism are unclear, medical experts
and educators are increasing their knowledge of just what it does
and what therapies may help in coping with it.
The first signs of the disability typically appear within the first
three years of life and include impaired language development,
delayed or non-apparent social skills and abnormal reactions to
sensory stimuli such as light, sound or touch.
Not every case is the same. Autism is described as a "spectrum
disorder" because those affected can display any of a wide variety
of characteristics and behavior traits. The severity of these traits
can vary from mildly apparent to debilitating.
On the extreme end, children and adults with autism are sometimes
described as living in their own worlds. Before autism was
identified as a separate condition in 1943, the disability was
mistakenly diagnosed as childhood schizophrenia.
Those who have a more mild form of autism known as Asperger's
syndrome may be able to function but have difficulty socializing
with others and a strong insistence on observing routines.
And some feel that a lot of different conditions have been lumped
together by those who diagnose the disorder.
"The more I meet people with autism, the more I wonder how they can
all be put under the (same) umbrella," said Beth Kimmel, outgoing
president of the Autism Society of America, Oakland County Chapter.
"I can introduce you to five people who have autism and guarantee
you'll wonder how they all got the same label."
Though no medical connections have been made, some within the autism
community believe so-called "attention deficit syndrome" and
hyperactivity disorder are actually mild forms of it, as well.
Like so much surrounding autism, this is subject to intense
disagreement and debate.
Dr. Ernest Krug, director of the Center for Human Development at
William Beaumont Hospital in Royal Oak, said that 10 percent to 20
percent of autism cases may be spurred by medical disorders such as
Fragile X syndrome, tuberous sclerosis and congenital rubella
syndrome. Yet more than 80 percent of cases are diagnosed as
idiopathic - meaning the cause is unknown.
Krug also said recent research indicates those affected by autism
may have a genetic disposition to it, but he added that there is
much to be learned.
"You also have some environmental factors that contribute to
realization of the autistic behavior," he explained - then added
that there is insufficient knowledge about just what those factors
are.
Debold agreed that the medical community needs to focus more
attention on research.
"The way I've heard it said, the genes load the gun, but the
environment pulls the trigger," she said. "We've got to find out
what those factors are."
One possible trigger, some in the autism community say, is mercury
used in an immunization preservative called thimerosal. A growing
number of caregivers are convinced that simultaneous increases in
use of thimerosal and autism, as well as similarities in the
symptoms of mercury poisoning and autism, speak volumes about the
role immunizations have played in autism cases.
But Krug said medical research exploring that possibility has
convinced the scientific community that no causal relationship
exists.
"When you look at the effects of mercury poisoning on people
neurologically, they're very different," he said.
Whatever the cause, there is no debate about the alarming rate with
which autism diagnoses are growing.
Still considered a low-incidence disability, autism affects between
two and six of every 1,000 children born. For unknown reasons, boys
are four times as likely to be affected as girls.
Why the mysterious spurt in cases? Some blame it on increased use of
thimerosal. Others argue improved diagnostic tools and increasing
public awareness have led to more diagnoses. Still others say the
growth rate is as mysterious as the disability itself.
Room for hope?
Much of the literature on autism describes it as a lifelong
disability for which there is no cure.
And, indeed, many parents and caregivers of people with autism live
with the concern that their charges will need support and care even
after they are gone. But like many other issues surrounding autism,
even the notion of a cure is a matter of debate.
"Every medical article out there will start with the phrase: Autism
is a lifelong disability with no cure, or have it somewhere in the
text. It's an absolute fallacy," Debold said.
She argued that advancing that notion fails to acknowledge advances
some people have seen with various approaches to treating the
disorder.
Experts working with Debold's son have been startled by changes
they've seen during the past 31/2 years and would not likely
diagnose him with autism now, she said.
A number of published accounts echo Debold's experience.
In addition to using traditional therapies, Debold has changed her
son's diet to avoid food suspected of worsening the symptoms, and
she has provided him with dietary supplements to address biochemical
deficiencies.
But, she cautioned, "The approach we've used with him may not be
correct for another child."
Debold added that because there is so much uncertainty surrounding
autism, she isn't sure that the positive changes in her son's
behavior are permanent.
"He's not out of the woods by any means," she said.
Traditional therapies that are used to make autism more manageable
reward children for desired responses and behaviors.
Another approach, called the Play Project, being pursued by
researchers at the University of Michigan, has shown encouraging
signs of reducing the effects of autism by engaging children with
the disability in time-intensive, directed-play activities designed
to capitalize on their ability to learn.
Long term, the greatest hope may lie in science's growing ability to
manipulate genes.
"If we can become a little more certain about where the genetic
markers are that play a role in autism, we may be able to develop a
gene therapy to replace them," Krug said.
But don't hold your breath. Like other gene therapies, Krug said he
believes one addressing autism is at least a decade away.
Today's challenges
Without a definitive cure and faced with a rapidly growing
population of students with autism, Oakland County is feeling the
strains of meeting the educational needs of those with the
disability.
Sharon Schwarze, supervisor of regional autism services for Oakland
Schools, said because its services are effective, the system has
become a magnet for parents of children with autism.
"It's both a blessing and a curse because it says we're serving kids
well, but it overloads us and it also overloads the social service
network here," she explained.
There are more than 800 such students in local programs now, with
another 100 expected to enroll next year.
Center programs in Royal Oak, Birmingham, Clarkston and West
Bloomfield handle the educational needs of students with the most
severe forms of autism. Several local school districts operate
classroom programs specifically for less-impaired students, and
students with high-functioning forms of the disability are often
integrated into general education classrooms.
Schwarze said Oakland Schools strives to place all autistic students
in the least restrictive environments possible and to optimize their
potentials to learn.
"To the extent that those kids are capable, you plug away with them
at the general education curriculum."
But students with autism learn differently from others. Many don't
generalize things they learn. A trip to learn how to go shopping,
for example, might have to be repeated at several grocery stores to
reinforce patterns.
For some people with autism, "they never see the forest," Schwarze
said. "It's all trees."
In addition to teaching life skills and elements of the general
education curriculum, state law requires school programs to begin
life transition and career planning curricula for students with
autism beginning at age 14.
Because of the growing demand and limited resources, Oakland Schools
has convened an Autism Focus Group.
Teachers, consultants, administrators, parents and school staff
spent several months last year comprehensively investigating
population growth and student needs with the Oakland Schools Autism
Program.
Kathleen Golinsky, director of special education for Oakland
Schools, said a broad range of recommendations for improvements
within the system is now before its board of trustees.
These include increasing the number of classroom programs in local
districts.
"The more district staff that are comfortable with their abilities
to meet the needs of these children, the less likely they are to
refer them to a center program," she said.
When possible, "you want a student in their local community because
they are part of that community. That is our guiding light."
Another challenge: A lack of teachers certified to work with
students with autism.
"There's a shortage across all areas of special education, but this
one is critical," Golinsky said.
Oakland Schools, along with a number of state and local education
organizations, is offering future special education teachers
incentives, including grants and tuition reimbursements, to enter
the field.
A broader issue
The medical and educational communities are not the only ones
struggling with the problems of autism. There are at least 25
community organizations in Oakland County that in some way serve the
needs of the autistic.
Kimmel said the recent creation of the Autism Council of Oakland
County - made up of a number of independent autism organizations -
will help not only the autism community but society in general meet
the needs of this growing population.
One aspect the council has agreed to focus on is the need of
families of people with autism to find occasional relief from the
constant caregiving demands. A respite center where people with
autism could be cared for would provide such opportunities.
Kimmel said participants in the Autism Council are combining efforts
to address the respite issue and others.
"I'm just so pleased that egos were checked at the door, and we were
able to start working on some of these things," she said.
Carolyn Gammicchia, a Shelby Township police officer and mother of a
12-year-old son with autism, said she, too, has been pleased to see
increasing societal efforts to meet the needs.
Co-founder of Law Enforcement Awareness Network (LEAN) on Us, she is
working with Michigan Protection and Advocacy services to improve
emergency responder training in ways related to people with
disabilities.
The collaboration also seeks to better educate parents of disabled
children to respond to emergencies and to prevent victimization of
the disabled.
Gammicchia said that because parents are accustomed to providing so
much for their children in care and support, they sometimes neglect
teaching the children to work with emergency responders and to avoid
victimization.
"Safety and health concerns are always the last things they teach
because, as a parent or caregiver of a person with a disability,
people often think they will always be there to take care of them."
Because parents of people with autism won't always be there for
their children, many in the community say society needs to assume a
larger role in caring for them.
With this come costs, however. The Autism Society of America reports
that dealing with the disability costs this country $90 billion per
year. It estimates that cost could rise to $400 billion a decade
from now.
Besides financial concerns, many in the autism community hope to see
a society that better understands autism and how to relate to those
with it.
Gammicchia said this is particularly important when it comes to
dealing with behavioral characteristics considered rude or
disruptive in general society.
"People often have a preconceived notion that we are bad parents or
that (their son) was out of control," she said. "We would get mad
because we would say he has autism and expect people to know what
that meant. But people really don't."
So now, she hands out cards containing information about autism and
its effects to people alarmed by behaviors they don't understand.
Characteristics of autism
Resistance to change in activities or environment.
Difficulty expressing needs with language.
Repeating words or phrases in place of responsive communication.
Laughing, crying or showing distress for no apparent reason.
Frequent temper tantrums.
In some cases, lack of eye contact and hesitance about cuddling.
Sustained unusual forms of play.
Prolonged or inappropriate attachment to objects.
Apparent oversensitivity or undersensitivity to pain.
No response to verbal cues.
- Source: Autism Society of America
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construed or intended as providing medical or legal advice. The decision
whether or not to vaccinate is an important and complex issue and should
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"A foolish faith in authority is the worst enemy of truth."
-- Albert Einstein, letter to a friend, 1901
"I know of no safe depository of the ultimate powers of the society but the people themselves, and if we think them not enlightened enough to exercise control with a wholesome discretion, the remedy is not to take it from them, but to inform their discretion by education."
-- Thomas Jefferson, letter to William C. Jarvis, September 28, 1820
"What's the point of vaccination if it doesn't protect you from the unvaccinated?"
-- Sandy Gottstein
"Who gets to decide what the greater good is and how many will be sacrificed to it?"
