[Note: Shared for #AutisticHistory archive purposes. This is NOT An Autistic Ally.]
The Anguish of Autism
The Jewish Exponent, October 23rd, 1997
“I have a little boy, my firstborn, who is autistic. I remember very well the day he was born, holding him in my arms, looking into his eyes and marveling about the continuity of life…
And then we took him home and loved him and raised him, but something went wrong. When he was just past 1, he stopped answering to his name. He lost the few words he had. In the space of two months, it seemed that our most precious gift had vanished before our eyes.”
With these words, Jonathan Shestack offered testimony to the Health and Human Services Subcommittee of the U.S. Senate in June.
Shestack, a former Philadelphian, was speaking both as an activist on behalf of autism research–he and his wife, Portia Iversen, are the founders of Cure Autism Now, a national organization–and as a father who has watched his son “vanish”, the casualty of a condition that has no known cause or cure.
Shestack, a Los Angeles film producer whose credits include the recent “Air Force One”, is on a very personal crusade.
“This condition affects over 400,000 people in the United States alone, and estimates are that one in every 500 children born will be diagnosed on the autistic spectrum,” Shestack said recently.
“Yet the scientific community has virtually ignored autism for the past 30 years, despite the fact that of all developmental disorders, it is the one most likely to yield to biological research.”
When Dov Schestack was born in 1992, a 9 pound baby with a full head of hair, said Iversen, she and her husband rejoiced. Dov sat up on schedule, walked, played and made sounds. But when he was about 10 months old, Iversen began to notice troubling changes.
“There were spells of staring that troubled me, and I remember saying to Jon one day that Dov seemed to be slipping into a world of his own,” Iversen said.
By the time Dov was 13 months old his anxious parents had shared their concerns with a pediatrician.
‘All so baffling’ “We weren’t even sure where to go, it was all so baffling,” Iversen recalled. “But at that point, we took Dov to a child psychiatrist, who couldn’t give us a conclusive diagnosis.”
Meanwhile, Shestack was frantically reading books about child development, hoping that his son was just experiencing s developmental lag. That hope ended with a diagnosis of autism when Dov was 21 months old.
“I was stuck in denial at first,” said Shestack. “I couldn’t talk about it. I couldn’t face it.” Iversen said she can remember thinking that her son had been abducted.
“Our child was disappearing before our eyes, and now we had the reason.” she said.
Things grew more difficult in Dov’s second and third year.
“Our son was under siege,” said Iversen, “He ground his teeth, he shrieked, he couldn’t sleep at night and was hyperactive beyond belief. He had dark circles under his eyes from sheer exhaustion”
Back in the 1950’s, said Shestack, psychiatrist Bruno Bettelheim had speculated in The empty fortress that autism was the result of “refrigerator mothers”, who caused autism by being remote.
“That tragic mistake set the entire autism research effort back 40 years,” he said. It is now recognized that autism is a medical disorder–one that usually strikes during the first two years of life.”
According to Dr. Ricki Robinson, a pediatrician at the UCLA Medical Center in Los Angeles, a diagnosis of autism is generally made on the basis of for defining characteristics: difficulty with receiving and expressing language, abnormal responses to sensory stimuli, resistance to change in routines and difficulty with social interaction.
For those with autism, every day experiences can be an assault, said Robinson, who serves on the board of CAN.
‘A terrible sensory assault”
“For example, we might be slightly bothered by a lawn mower’s hum, but we’d learn to absorb it.” The pediatrician said. “An autistic child would be profoundly affected by what would become a terrible sensory assault.”
Robinson describes the treatments for the disorder as “a wooing process” a systematic attempt to meet the child on his or her social / emotional level through intensive therapy.
As they pursued therapy for Dov, Shestack and Iversen founded Cure Autism Now 1993 with a very focused mission.
“We saw a great need for funding research–especially genetic research–and for pilot studies into various aspects of autism. CAN is also working to bring together neurologists, pediatricians, and developmental specialists to establish guidelines for a comprehensive medical workup for children suspected of having autism.
“Because early intervention is vital, and because the prevailing technique is to enter the world of the autistic child as soon as possible, a well defined medical workup is also essential,” said Robinson.
As the research goes forward, 5 year old Dov, who now has a sister, Miriam, almost 4, and a brother, Gabriel, 5 months is progressing, but slowly.
“He’s emotionally related to us, ” said Iversen, “He’ll cuddle and hug, and he can do simple tasks but he’s a little boy with serious problems.”
“There’s terrible frustration in reaching Dov, and it’s a special torture for a parent to have a child who can’t tell you what he needs or feels.”
For Shestack’s parents, Philadelphia communal leaders Marciarose and Jerome Shestack, the diagnosis of Dov’s autism was a devastating blow.
“We grieved three times, once for the beautiful little boy, once for his parents, and finally for ourselves,” said Marciarose Shestack.
“But you move on and Jerry and I are doing everything possible to help CAN because we recognize how much needs to be done.”
One of the immediate goals of CAN is to establish a Philadelphia chapter.
“We’re very anxious to add Philadelphia to our network that now includes chapters in New Jersey, and Orange County, California,” said Jonathan Shestack.
“There’s a lot of catching up to do in all areas of autistic research, and we hope Philadelphia will join our effort, because autism is a heartbreak that won’t go away.”
For more information about CAN, call (323) 549-0500, or 1-888-8AUTISM
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.