[Note: Shared for #AutisticHistory archive purposes. This is NOT An Autistic Ally.]
TV Meets Reality: Brad Whitford Lobbies For Autism
By John Morgan, Spotlight HealthWith medical adviser Stephen A. Shoop, M.D.
Sometimes truth is stranger than fiction. But for The West Wing star Brad Whitford, the truth about autism actually became fiction -as an episode of NBC’s Emmy-winning drama. In real life, Whitford has seen the face of autism.
He was college roommates and is best friends with film producer Jonathan Shestack, who along with his wife Portia Iversen founded Cure Autism Now (CAN), the largest private funding source for autism research in the country. Shestack’s son has autism, a complex developmental disorder that can cause serious communication and cognitive disabilities.
Whitford decided to lend his support to a federal bill to help fund autism programs. “I was involved as part of the celebrity lobby helping to pass the Children’s Health Act of 2000, of which funding for autism was the engine on the bill,” recalls Whitford. “I was green to the political process but became fascinated with how a bill becomes law.”
The biggest hurdle, according to Whitford, was preventing the bill from becoming a “Christmas tree.”
“Everyone wants to hang an ornament on it in the form of riders and attachments,” says Whitford, who plays Josh Lyman. “People were trying to attach tobacco and abortion legislation. It was important the bill be decided only on its own merits.”
Through skillful lobbying efforts, the bill passed unanimously and was signed into law last October. For children’s health advocates, the passage of the legislation is a major victory.
To families with autistic children, the new law is a miracle – authorizing $200 million over five years for the creation of five national Centers of Excellence for research, prevention and treatment.
But the Children’s Health Act victory only whetted Whitford’s appetite. He became so intrigued with the bill process that he pitched his boss, West Wing creator Aaron Sorkin, an idea for an episode based on his real Washington experience.
Sorkin, however, was already working on a show about a filibuster and felt the entire autism issue would play perfectly and incorporated it into “The Stackhouse Filibuster” script.
“It’s not precisely what I pitched Aaron,” says Whitford. “But who’s going to argue with the best writer in Hollywood?”
In the show, an aging Senator Stackhouse stages a filibuster to prevent passage of the Family Wellness Act because it neglected to include funding provisions for autism. Unbeknownst to the White House, the senator has a grandchild with autism and will not yield the floor to a vote.
The episode is vintage West Wing – funny and moving while illuminating an important national debate. The show was seen by millions of viewers and helped raise autism awareness across the USA.
“Aaron is a brilliant civic-minded human being, but because he’s an incredible showman, he can’t stand a grim serving of civic vegetables,” says Whitford. “A lot of families called in thankful for the awareness the show raised.”
And autism needs greater awareness. Not just for increased research, but because the sooner a child is diagnosed with autism, the sooner they can begin treatment. To this end, funding from the Children’s Health Act will also support physician education programs to ensure early diagnosis of autism.
“The sooner we begin treating a child with autism the better the prognosis,” says Dr. David L. Holmes, chair of the professional advisors for the Autism Society of America (ASA). “We can’t cure autism, but we can mitigate the expression of it with early intervention.”
In the show, timely intervention by the president saves Senator Stackhouse.
Under filibuster rules, Stackhouse can rest only if asked a question so the president, played by Martin Sheen, dispatches a loyal senator to the Senate floor ask Stackhouse a friendly question about autism, interrupting the filibuster. The move succeeds and the bill is returned to committee, where autism provisions are eventually attached.
Many families are not only asking questions about autism, they’re looking for answers.
This month, researchers provided more pieces to the autism puzzle and again restored hope that more effective treatments will emerge. A recent multi-center, Phase II study determined that the hormone secretin, which stimulates the pancreas to aid digestion, was in fact effective in treating autism.
“This is a good, clean study showing efficacy,” reports Dr. Stephen M. Edelson, director of the Center for the Study of Autism in Salem, Ore. “Now we need Phase III trials and a FDA approval for synthetic secretin to move forward.”
Secretin previously had generated excitement based on anecdotal evidence of near-miraculous reversals of autism. But studies deemed the treatment ineffective, cutting short many families’ budding hopes.
“These previous conclusions were based on Phase I studies,” explains Edelson. “But Phase I trials only allow you to determine safety, not efficacy. The only valid conclusions from these studies should have been that secretin has no side effects. Not that it wasn’t effective.”
While the exact mechanism of how secretin helps people with autism is unknown, the theory is that it stimulates similar neural pathways and possibly neurotransmitters used by the brain to communicate with the gastrointestinal tract.
“There are a lot of gastrointestinal problems in the autism patient population,” says Edelson. “We need a lot more studies to investigate this connection.”
Holmes, who is also an adjunct professor of psychology at Princeton University, agrees that secretin warrants further investigation. In the meantime, however, he stresses that researchers are getting closer and closer to determining the causes of autism.
Researchers at the University of Rochester have identified a gene, HOXA-1, that is significantly involved with the development of the brain and that may play a substantial role in autism. Another study has identified a protein present in 65% of the children with autism.
By identifying proteins and genes involved in autism, doctors can recognize and treat children earlier.
“This is all good news, but it doesn’t mean we’ll necessarily find a cure,” says Holmes. “We still have to emphasize the quality of care because it is absolutely critical for children.”
Both Edelson and Holmes are confident that increased funding from the Children’s Health Act will improve delivery of services to families dealing with autism.
“There is hope. Autism is not a death sentence,” says Holmes. “People can live fulfilling lives if they are given the opportunity to avail themselves of appropriate specialized services.”
That’s a declaration Whitford can get behind.
“I’ll do anything I can for CAN because it was heartbreaking when Jon andPortia’s son started to go away,” he says. “My wanting to help comes from their vision to help not just their own family but all families tragically touched by autism.”
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.