[Note: Shared for #AutisticHistory archive purposes. This is NOT An Autistic Ally.]
The Enemy Within
(September 23, 1996)
September 23, 1996
“No baby was desired more,” says Jonathan Shestack of his son Dov. His birth in 1992 was going to mark another happy chapter for Shestack, producer of an upcoming Harrison Ford thriller,and Portia Iversen, an Emmy-winning art director turned scriptwriter. After a seven-year courtship, the couple had married in 1991, and Shestack was already like a father to Iversen’s daughter Emily, now 18. But their joy turned to despair when, at 21 months, Dov was diagnosed as autistic.
A neurological developmental disorder, autism has no known cure or cause, though it is thought to be genetically based. Says Dr. Pauline Filipek, a professor of pediatrics at the University of California at Irvine: “The symptoms range from mental retardation, lack of awareness of people, mutism and repetitive or self-injurious behavior to normal or above-normal intelligence, poor or inappropriate communication skills, and fewer obsessive-compulsive or ritualistic behaviors.” (Only a tiny percentage of autistic people possess the inexplicable mathematical talents displayed by Dustin Hoffman’s character in the 1988 film Rain Man or are gifted musically or artistically or demonstrate astonishing feats of memory.) Afflicting nearly 20 people in every 10,000, autism is more prevalent than multiple sclerosis, cystic fibrosis or Down syndrome.
Now 4, Dov “is very limited,” says his father. “He can barely do two or three actions in a row. He can’t talk. He can’t tell us what he wants.” Determined to help their son–and others–Shestack and Iversen set up CAN (Cure Autism Now). Based in Los Angeles, the 10-month-old organization raises money for biological research and, through mailings, conferences and a Web site (http://www.canfoundation.org), serves as an information exchange for families affected by autism. With a membership numbering 4,500 families, it has raised $200,000, funded seven pilot studies and started a collaborative gene bank to help develop treatments and find a cure. “Every day there are advances in neurology, genetics and molecular biology,” says Shestack. “It’s our task to focus these new techniques on autism. Once there is research with good results, agencies like the National Institutes for Health will fund further research.”
On a recent afternoon, Jonathan, 37, and Portia, 42–now also the parents of 2-year-old Miriam–sat in the living room of their Spanish-style Los Angeles home and spoke with correspondent Karen Brailsford about their son.
Portia: Dov was born by cesarean section on April 28, 1992. He was a big, 9-pound baby with a full head of hair. He seemed fine, but we weren’t thinking about him being anything but fine.
Jonathan: We were so happy to have him. But as he grew older, he didn’t put on weight. We lived by the scale.
Portia: It was going from having our dream come true to barely holding on to it. We knew there was something wrong with Dov biochemically. We had a kid with severe gastrointestinal problems, bad diarrhea and lethargy. There were days I’d spend all day in the doctor’s office. He’d say, “I hate to send you to the emergency room because they’re not going to know what’s wrong. I don’t know.” Nobody knew.
Jonathan: Eventually, Dov got better. When he was 4 months old, he started to gain weight, he sat up on time, he walked on time, he banged the kitchen cabinets. Then, when he was 11 months old, things didn’t seem quite right. I was obsessively reading child-development books, and he didn’t seem to be moving on to the next step. Portia would say, “Boys develop a little slower than girls. You’re just being overly competitive.”
Portia: I remember Jon coming home one night and standing in the doorway. Dov was three feet away with his back turned. Jon said, “Hi, Dov, Daddy’s home.” There was no response. I said to Jon, “Dov seems to be disappearing into a world of his own.” I’d look at him in his high chair, and he’d look past me. He’d have staring spells, and they became more and more frequent until they just seemed to blend together. He was vanishing.
Jonathan: We were just starting to be worried about Dov when Portia got pregnant again. Had we known Dov was autistic, we might not have had Miriam. There’s a greater chance for us than for other parents that we could have another autistic child. Only now that she’s almost 3 do I say, “Okay, it’s not going to happen to her.” But I watched her like a hawk. If she spaced out in front of the television or seemed absentminded the way any kid might, my heart would race.
Portia: Finally, when Dov was 13 months old, I sheepishly told our pediatrician that Jon was worried about his development. After examining him, the doctor said I should call a specialist. My adrenaline started racing. I asked, “What kind of specialist? What do you think is wrong?” He said, “Sometimes the wiring’s just not right. You know, a personality disorder.” It was Memorial Day, and we couldn’t reach anybody except this one guy. He couldn’t see us, but over the phone he said, “Gee, it sounds like autism. You’ll just have to hold each other and cry as this unfolds.”
Jonathan: Two weeks later, on the advice of a psychologist friend, we began taking Dov to a child-development specialist. She gave us good advice about getting down on the floor and in Dov’s face and trying to force interaction, but she never said the word “autism.” She was afraid to give the diagnosis. We lost six months when we could have been doing a lot of the aggressive intervention we began later.
In February 1993 we went to UCLA to meet with autism experts. Although we had read everything and figured out what it was, we spent six hours doing diagnostic tests and being interviewed. Then they said, “Well, we agree. He is autistic.” Neither of us ever knew anyone with autism.
Portia: I remember sitting in Dov’s room at night and crying. Iknew that he was being sucked into another world without my being able to stop it. The most terrifying thing was that there was no expert out there who knew anything more than we did.
Jonathan: Our doctors didn’t tell us to doanything. The old-liners say, “We don’t want to get the parents’ hopes up.” Why shouldn’t we get our hopes up? The only response is to be active. If you’re not, you’ve given up.
We started a lot of therapies for Dov, including sensory integration (which helps regulate touch, balance and other sensory relationships), speech therapy, occupational therapy (which teaches specific tasks) and behavior modification (which reduces learning into the smallest components), drilling them over and over and rewarding the child for getting it right. Though we made progress–after a year, Dov learned to nod yes and no and to complete a simple task–it was clear that this wasn’t enough. Dov needed medical treatment. We assumed the medical community was going to provide answers. They’re doing research, aren’t they? Then we realized there was no “they,” no concerted, funded effort. So we thought, what can we do to help Dov? We came up with CAN.
Portia: I took a class in immunology and went on to molecular cell biology. It became clear that though autism is a complex disorder, affecting multiple systems, it is a medical problem, not a psychological disorder that will one day have a medical solution.
Jonathan: I took courses in non-profit management, fund-raising and grant writing. But Portia really took over. She got involved with autism groups on the Internet, including parents who later became the core group of CAN. It was like those stories of mothers who lift up the car because the baby is caught underneath.
Portia: We didn’t want to just stand by while our child was very ill.
Jonathan: Every night I go to bed hoping I’ll wake to find my son well. And then in the morning I hear Dov making his sweet little noises in the next room, and I know what we have to do. Dov can barely point to something and indicate what he wants, yet when I look at him and he smiles at me, it seems clear that he’s in there–a person trapped by his disability.
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.