Panicked Speculation and Polarization Over
Autism Spread in Illinois
[By Becky Beaupre in the Chicago Sun-Times.]
The number of children classified as autistic has risen starkly in
Illinois and across the country, perplexing parents, schools and medical
researchers.
The new cases of autism have unleashed panicked speculation from
parents, strained special education programs, polarized researchers, and
sparked a passionate debate over whether vaccinations could be the cause.
"We cannot pinpoint exactly why this has happened," said Arlene Blaha,
executive director of the Autism Society of Illinois, in Lombard. "It's been
really difficult for the schools, even schools with good special ed
departments. It's becoming a major, major concern."
The number of students classified as autistic in Illinois nearly
tripled from 1995 to 1999.
Among the effects:
* Schools, like those in Blue Island District 130 and Palatine
District 15, have stepped up training to deal with students with this
complicated neurological disorder, which impairs social interaction and
communication.
* Parents, such as Wilmette resident Liz Birt, whose son Matthew, 6,
is autistic, have taken on the cause as unpaid jobs, pouring 60 hours a
week--sometimes more--into research and lobbying.
* Doctors have offered dueling explanations.
Some attribute the rise to increased awareness, better diagnosis and a
broader definition of the disorder. They believe schools are doing a better
job of classifying and meeting the needs of autistic children.
"Prior to the last few years, these kids were classified as mentally
retarded," said Bennett Leventhal, a child psychiatrist at the University of
Chicago. He and many others believe the cause is largely genetic.
But other medical experts have pointed to a different, more
frightening theory: Certain vaccines--including the three-in-one "MMR" shot
given to prevent measles, mumps and rubella--could play a role in triggering
autism. They point to cases where the signs of autism emerged shortly after
an MMR shot was given.
"It's extremely alarming," said Bernard Rimland, director of the
Autism Research Institute in San Diego and founder of the Autism Society of
America. "It's an incredible tragedy. It needs to come to a halt."
The Centers for Disease Control and Prevention has noted that the
signs of autism sometimes emerge shortly after age 1--the same time the MMR
vaccination is given.
"There may be a correlation, but it may not be causal," said Frank
DeStefano, a medical epidemiologist for the CDC.
Still, the rising numbers have been alarming enough to prompt several
major research projects, including a clinical study that began Sept. 30 at
the U. of C.
The 18-month study, conducted by the National Institutes of Health and
the CDC, will evaluate whether a link exists between vaccinations and
autism, said Marie Bristol-Power, special assistant for autism at the
National Institute of Child Health and Human Development. The research will
focus on regressive autism, in which signs emerge as a loss of skills at age
1 or 2, rather than appearing immediately after birth.
"We really need to look at why the numbers are increasing,"
Bristol-Power said. "I think part of the increase is explained by the
changes" in diagnosis, classification and awareness. But is that enough to
explain the entire rise? "Probably not."
So for now, the questions remain.
* * *
At 15 months, Liz Birt's son Matthew could count to 10. He had started
saying "mama" and "daddy" and "ready, set, go!"
"He was very social," said Birt, an attorney who practices part time.
But by the time he turned 2, Matthew had changed.
He began retreating into a private world, seeming at times to tune out
those around him. He did a lot of jumping and spinning. Finally, he stopped
speaking.
"It was horrifying," Birt said, a sick expression drifting across her
face as she remembered the slow, heartbreaking regression.
Matthew was diagnosed with autism in October 1996, when he was nearly
3.
Now, at 6, Matthew says fewer words than he did at 15 months. He uses
single words to express his needs--such as "go" and "more"--but he can't
carry on a conversation. He has trouble focusing and rarely makes eye
contact with strangers.
"There's somebody in there, but not all the pathways are open that
allow him to speak," his mother said.
In addition to the autism, Matthew has been plagued by bowel problems,
exacerbated by his difficulty in communicating his persistent pain and
discomfort.
For a couple of years after the diagnosis, Birt was at a loss to
explain these problems. Her two other children, Sarah, 8, and Andrew, 4, are
fine.
But then Birt began hearing about possible links between vaccinations,
autism and bowel disease. She realized that the bowel problems and signs of
autism had begun not long after Matthew was given his MMR vaccination.
For Birt, that's when things began to make sense. The spiking fever
her son had gotten just after his MMR shot. The sudden change in his
behavior. The skyrocketing autism numbers she was hearing about.
It was a pattern she could not blame on genes.
"I don't think there's any such thing as a genetic epidemic," she
said.
* * *
Dr. Edwin Cook, a child psychiatrist at U. of C., has found all the
speculation about an autism-vaccine link a bit unsettling. For one, he
hasn't seen any convincing proof that such a link exists.
"Is it possible? Yes," he said. "But a lot of things are possible."
For another, he worries that an unproven theory can suck parents in,
convincing them that they could have prevented their child's horrifying
transformation.
"The MMR [theory] gets tied into parental guilt, which really bothers
me," he said.
Third, he worries that parents could stop immunizing children.
"Under-vaccination may lead to the deaths of children," he said.
And it could also lead to more cases of autism. A rubella infection in
a pregnant woman could lead to autism in the child, Cook said.
Much of the fuel for the vaccine theory comes from Dr. Andrew
Wakefield, a gastroenterologist at the Royal Free Hospital in London. In
1998, he studied 12 autistic children who also had gastrointestinal
problems. He concluded that the weakened measles virus in the MMR vaccine
could cause bowel problems that might lead to autism by disrupting the
absorption of nutrients.
To Liz Birt, Matthew's mother, the theory made perfect sense,
instinctively and intellectually. After all, she knew what she saw.
"He was not born this way," she said of her son. "He was a perfectly
normal little boy."
But Wakefield's study has been criticized as flawed by much of the
medical establishment. The CDC and others have said the study used too few
cases and didn't have adequate control groups.
Critics have also pointed to a later study by Dr. Brent Taylor, also
of Royal Free Hospital. Taylor studied nearly 500 autistic children and
failed to find a link.
But Wakefield believes his theory deserves serious consideration--and
balks at the notion that the MMR and onset of autism in some children merely
coincide.
"You do not assume from the outset that it's coincidence," he said.
"It's an argument of convenience."
Cook, the child psychiatrist, agrees that there needs to be further
study.
"The other thing that haunts me," he said, "is that one of these
[theories] may be right."
* * *
There is one thing autism researchers, educators and parents know for
sure.
The rise, regardless of cause, is having an impact in classrooms and
living rooms. From 1995 to 1999, autism cases in Illinois rose to 3,662 from
1,353, an increase of 171 percent, according to the Illinois Board of
Education.
Nationally, the cases rose nearly as much, 136 percent, to 53,576 from
22,664. Educating an autistic child can cost two to five times as much, and
requires more expertise.
Stevenson High School in Lincolnshire has begun offering more training
for staff members working with autistic children.
Palatine District 15, which has seen the number of autistic children
rise to about 40 from just 15 in four years, has added nearly a dozen
teacher aides, a speech pathologist, a social worker, an occupational
therapist and a part-time autism specialist in recent years.
"This particular disability is just so much more challenging," said
Darrell Mittelheuser, District 15's director of student services. "The
intensity of involvement between staff [and students ] is tremendous. It has
to be one-on-one to the maximum extent possible."
Autism also has exacted an emotional toll that is harder to quantify.
Sharon Crist of Northfield knows well the feelings of loss, guilt and
frustration. Her son Willie, now 8, was developing normally until he began
to regress when he was about 15 months old.
"There's so many times you look in his eyes, and it's like he's so
close to being who he was," she said. "We have definitely lost the child we
knew, and that is so devastating."
Stuart and Denise Charney of Buffalo Grove first noticed something was
wrong with their son Trevor, now 4, when he was about 19 months old.
"He was developing fine," Stuart Charney said. "He was beginning to
speak. He was happy. He was engaged. Then all of a sudden--withdrawing. . .
. You couldn't interact with him. It was as if someone took him away,
someone took a very happy boy and just left the body."
Charney isn't completely convinced that vaccines are the cause, though
he finds the explanation plausible.
But, as he plans for his son's future, he knows this: He wants
answers.
"It's overwhelmingly frustrating," he said. "You sit back and say,
`What's going to happen to him?' "
For more information on autism, call the Autism Society of Illinois at
(630) 691-1270 or visit its Web site at www.autismillinois.org.
Author: Becky Beaupre
Source: FEAT DAILY NEWSLETTER
