TV Character who talks to God
By John Morgan, Spotlight Health, with medical adviser Stephen A. Shoop, M.D. in USA Today
On the CBS hit Joan of Arcadia, Amber Tamblyn’s character talks to God. Now the actress wants to talk about something equally important -helping people with developmental disabilities such as autism, cerebral palsy and mental retardation.
“Developmental disabilities affect millions of people either
directly or indirectly,” says Tamblyn, who also appeared in The Ring. “I wanted toget involved because getting treatment can be really expensive. To know there might be help for your child or someone you love but not be able to do anything about it simply because of money is terrible.”
Tamblyn literally took steps to help make sure that doesn’t happen.
Tamblyn supports the Achievable Foundation, a Los Angeles charity
that endeavors to improve the lives of people with developmental disabilities
such as autism and cerebral palsy but who cannot afford treatment.
“I got everyone from the show to join me in their annual 5K walk,”
says Tamblyn, who is excited about the show’s premiere Friday, Sept. 26, 8
p.m. ET/PT on CBS. “It was a fun day, and we raised money for a great
cause.
We had entire families out walking with their sons and daughters who had
autism and other developmental disabilities. It was a day full of a lot of
smiles.”
Tamblyn is particularly familiar with autism, a developmental
disorder that adversely affects early brain development, often causing
communication difficulties and problems with social interactions.
“My co-star Joe Mantegna has a daughter with autism,” Tamblyn says.
“And one of my friend’s has a brother with the disorder. So it is always
close to me. Does anyone not know someone with autism?”
Perhaps not many. Autism statistics are steadily getting worse.
Up to 10 million people have a developmental disability, an umbrella
term referring to an adaptive challenge caused by cognitive and/or
physical impairments. According to the Centers for Disease Control and Prevention,autism is the most common developmental disorder. As many as 1.5 million Americans – or 1 in 250 live births – have some form of the disorder.
Based on the current growth rate, by the next decade the prevalence of autism could exceed four million people.
God’s work But scientists and researchers are hoping to stem the
tide on the flood of autism. At the Autism Society of America’s 35th National
Conference on Autism held two weeks ago in Seattle, new research was
presented that brings some hope to families dealing with the disorder.
“Right now we are employing a two-pronged approach to solve the
autism puzzle,” reports Geraldine Dawson, professor of psychiatry and director of the University of Washington Autism Center. “One is a long-range strategy based in genetic research to try and understand at a biological level what causes autism. We have virtually no understanding of this mechanism. We don’t have any medications. We can’t even explain to parents why their
child is behaving at a molecular level the way they are.”
Dawson says genetic research into the cause of autism will
undoubtedly pay off at some point – the question is: how long will it take? “Maybe within five years we might know enough about the genetics of autism to have what is called a biomarker – where at birth you could look for an abnormal product from a gene in the blood and are able to determine that the child is at risk for autism,” Dawson says. “This would allow us to start the
intervention as early as possible.”
Early diagnosis is critical because the second prong is effective behavioral interventions. These behavioral interventions – like applied behavioral analysis – if instituted early enough may even prevent autism by essentially “re-wiring” the brain.
Dawson reports that initial evidence shows that these intensive
interventions can actually stimulate brain circuitry that hasn’t worked
normally before.
“We are targeting parts of the brain that aren’t working well, like
the ability to process information from faces,” Dawson explains. “We have
a study where we are teaching people with autism to be face experts. We hope to determine whether we can activate brain regions through these
behavioral interventions that were not working properly.”
Scientists have demonstrated that the brain develops in response to
specific types of input. But a child who is never exposed to language is
not going to develop normal language skills even if they had the potential to
do so.
“While the brain comes ready to receive certain types of
information, it doesn’t develop normally unless it actually receives that information,” Dawson states.
One of the classic signs of autism is that children do not become
socially engaged – like paying attention to faces or speech. Behavioral
interventions teach children with autism that the world of social
information is interesting and important.
Divine intervention “Once they begin paying attention to this social
information, the brain systems can start to get the input they need to
begin developing more normally,” Dawson says. “We don’t know yet how much of the autism symptoms we see is secondary to just failing to get the appropriate input at early points in development.”
Dawson has launched an interv ention trial for infants 18 months of
age. The children will receive intensive intervention over a two-year
period where they get up to 30 hours a week of one-on-one intervention.
Ultimately, Dawson says the goal is to prevent up to 25% of cases of
autism in the long run just through early intervention and early
identification. To help identify infants with autism sooner, Dawson is
collaborating with the University of Connecticut on a more effective
screening checklist that is used at 18 months.
“The kind of impairments you see in autism – like not having an
interest in other people – are something we should pick up early on
because even a very young infant is interested in looking at other people,” Dawson states.
In the meantime, MRI technology may also provide help in
understanding early brain development as well as give clues about which kids will respond to behavioral interventions.
“As early as age three, we found using MRI that the size of the
amygdale predicted how easily the child acquired social skills during
early life,” Dawson says. “Kids who early on have an abnormally large amygdala tend to do less well over time.”
Dawson is passionate about good clinical research because she says
science is way ahead of social policy. Many insurers will not pay for
autism treatment, leaving families holding the bag on up to $40,000 per year in therapy costs.
“We know that these early interventions are not only effective for
improving children’s outcomes, but they are very cost effective,” Dawson
says. “Cost benefit analyses of early intervention have shown that by the
time someone with autism is 55 you will have saved one million dollars per
individual on average. If our study finds the intervention effective, I am
ready to go out to the insurance companies and the government and get them to help these families.”
Tamblyn is also a passionate advocate.
“For other diseases, many of the people afflicted can actually go
out there and speak for themselves and raise money for themselves,” Tamblyn says. “Kids with autism often cannot do that. They need and deserve our support.”