[Note: Shared for #AutisticHistory archive purposes. This is NOT An Autistic Ally.]
ER’s Anthony Edwards curing autism now
Oct. 12, 2000
By John Morgan
With medical adviser Stephen A. Shoop, M.D.
A Doctor In Your House.com
Every Thursday night for the past six years ER star Anthony Edwards has cured people’s ills as the compassionate Dr. Mark Greene.
Last Thursday night at the Beverly Hills Hotel, Edwards was again making rounds. But instead of operating with a scalpel, the Golden Globe winner was helping cure autism, a complex genetically-linked developmental disorder that can cause serious communication and cognitive disabilities.
Autism affects the normal development of the brain, making verbal communication difficult and, when severe enough, preventing social interactions. Not surprisingly, an autism diagnosis can emotionally devastate parents.
Edwards’ boost for the cure is in elevating awareness of the disease — and raising funds to fund critically needed research. “The only real value of celebrity is it can give a voice to those who are without one,” says Edwards, host of a gala benefit to raise money for Cure Autism Now (CAN), the USA’s largest private funding source for autism research.
Assisting Edwards in the CAN fundraising operation were many other celebrated stars, including Carla Gugino of Chicago Hope, Harry Hamlin and his wife actress Lisa Rinna, and Gil Bellows, formerly of Ally McBeal.
“I learned about autism when my manager’s second child was born with it,” shares Bellows, who donated his $25,000 Celebrity Jeopardy winnings to CAN.
“What’s incredible,” notes Bellows, “is that autism is more common than multiple sclerosis, Down syndrome or cystic fibrosis — yet it gets a fraction of the attention or funding.”
Five percent of the funding to be exact.
But CAN is changing that glaring disparity in a hurry. The benefit, which concluded a three-month fundraising effort with Coldwell Banker Southern California, raised over $400,000. To date, CAN has granted over $5 million for new research.
Autism strikes an estimated one out of every 500 people and costs the USA over $13 billion a year to treat. The disease is four times more prevalent in boys than girls.
Upwards of 400,000 families are affected by autism. According to a 1999 California Department of Developmental Services report, the diagnosis of autism has increased a staggering 273% since 1987.
Researchers don’t know exactly why someone is autistic, but the disease is generally believed to be caused by several wayward genes. Environmental influences may also play a role.
[Note: Autism is NOT a disease, but a neurodevelopmental difference and disability.]
While research continues, the best hope for autistic children now is early diagnosis and intervention. Studies indicate that treating infants as young as 18 old months provides the greatest hope.
But diagnosing an 18-month-old with autism can be challenging.
“There’s no diagnostic test. This is a spectrum disorder — no two kids with autism are alike or have the same symptoms,” explains Dr. Ricki Robinson, co-director of the Descanso Medical Center for Development and Learning. “Plus, one symptom of autism is a substantial delay in understanding language and speaking. But many kids don’t speak that much at 18 months.”
Other classic symptoms of autism include:
Delayed social interaction — The patient neither readily acknowledges nor initiates interpersonal communications.
Need for repetitive routines — Rocking back and forth, hand flapping or repeating other movements.
Sensory processing abnormalities — All five senses may be involved. The child may have heightened or decreased sensitivities to sight, sound, touch, taste and smell.
Auditory processing delays are especially pronounced. “The autistic child is not ignoring you when you’re talking,” clarifies Robinson. “You’re simply not on their computer screen. Yet they’ll immediately attend to the sound of a jet flying over head that we’re not even aware of.”
But symptoms vary widely, underscoring the highly individualized nature of the disorder. “Someone with autism gets sensory information, but it’s not processed by their brain to allow the output or reaction that we’d expect,” says Robinson.
Because of these unique facets, determining what the autistic child responds to in his environment — and changing that “prompt,” rather than initially attempting to change the child’s responses — may be key.
To assist autistic children and their families, Robinson creates highly individualized therapies. Children get 30-40 hours per week of therapy from a multi-discipline team of psychologists, physical therapists, nutritionists and speech pathologists.
The therapy is extremely expensive — $60,000-$80,000 per year. For life. More devastating, treatment is typically not covered by insurance.
Nor do the treatments always work. Only a few medications are available to help relieve some symptoms. Very low doses of selective serotonin reuptake inhibitors (SSRIs) seem to work well on repetitive behaviors. Anti-convulsants, like Depakote, can help stabilize moods and treat the epileptic seizures that a third of young autistics develop.
“There is no question we need better treatments,” concludes Robinson. “That’s why it has been so important for CAN to lead the way in research.”
The true guiding lights of the evening were CAN’s founders Jonathan Shestack, who produced Air Force One, and his wife, Emmy award-winning art director Portia Iversen.
Shestack and Iversen, whose son has autism, were surprised and frustrated by the lack of options for families dealing with autism — and the lack of funding for autism research.
Rather then wait helplessly, Shestack and Iversen started CAN. They also started their own gene bank, called the Autism Genetic Resource Exchange (AGRE). The group gives away DNA samples from people with two or more autistic children, as long as the research conducted is shared with other scientists.
“This strategy is unbelievably effective and has motivated dozens of researchers who otherwise would not have studied autism,” reports Dr. Daniel Geschwind, associate professor and director of the neurogenetics program at UCLA.
As a result, genome scans have already narrowed the search for the elusive genes that cause autism. “There was nothing two years ago,” adds Geschwind. “Now I would optimistically predict that in two years we will have some of the autism genes identified.”
But according to a light-hearted Edwards, research still isn’t moving fast enough. “As I always joke with Jonathan, the goal is to put ourselves out of business and cure autism — not in a week or a month or whenever the scientists can get around to it — but NOW!”
Leave it to an ER doctor to drive home the message that every second counts when people are sick and in need of healing.
More With Cure Autism Now
Autistic people have fought the inclusion of ABA in therapy for us since before Autism Speaks, and other non-Autistic-led autism organizations, started lobbying legislation to get it covered by insurances and Medicaid.
ABA is a myth originally sold to parents that it would keep their Autistic child out of an institution. Today, parents are told that with early intervention therapy their child will either be less Autistic or no longer Autistic by elementary school, and can be mainstreamed in typical education classes. ABA is very expensive to pay out of pocket. Essentially, Autism Speaks has justified the big price tag up front will offset the overall burden on resources for an Autistic’s lifetime. The recommendation for this therapy is 40 hours a week for children and toddlers.
The original study that showed the success rate of ABA to be at 50% has never been replicated. In fact, the study of ABA by United States Department of Defense was denounced as a failure. Not just once, but multiple times. Simply stated: ABA doesn’t work. In study after repeated study: ABA (conversion therapy) doesn’t work.
What more recent studies do show: Autistics who experienced ABA therapy are at high risk to develop PTSD and other lifelong trauma-related conditions. Historically, the autism organizations promoting ABA as a cure or solution have silenced Autistic advocates’ opposition. ABA is also known as gay conversion therapy.
The ‘cure’ for Autistics not born yet is the prevention of birth.
The ‘cure’ is a choice to terminate a pregnancy based on ‘autism risk.’ The cure is abortion. This is the same ‘cure’ society has for Down Syndrome.
This is eugenics 2021. Instead of killing Autistics and disabled children in gas chambers or ‘mercy killings’ like in Aktion T4, it’ll happen at the doctor’s office, quietly, one Autistic baby at a time. Different approaches yes, but still eugenics and the extinction of an entire minority group of people.
Fact: You can’t cure Autistics from being Autistic.
Fact: You can’t recover an Autistic from being Autistic.
Fact: You can groom an Autistic to mask and hide their traits. Somewhat. … however, this comes at the expense of the Autistic child, promotes Autistic Burnout (this should not be confused with typical burnout, Autistic Burnout can kill Autistics), and places the Autistic child at high risk for PTSD and other lifelong trauma-related conditions.
[Note: Autism is NOT a disease, but a neurodevelopmental difference and disability.]
Fact: Vaccines Do Not Cause Autism.