[Note: Shared for #AutisticHistory archive purposes. This is NOT An Autistic Ally.]
IS AUTISM INCURABLE?
By Michele Mohr
Imagine being in a foreign country where you don’t understand the language or the customs and where your failure to act as the residents do is interpreted as stubbornness or stupidity. That scenario, according to parents and researchers, characterizes the world of an autistic child.
Autism is a neurobiological condition diagnosed through certain behavioral characteristics; no one knows what causes it, and there is no cure. However, a determined group of parents is hoping to find some answers; local chapters of the Cure Autism Now Foundation, including a recently formed Orland Park group, are focusing their efforts on bringing together scientists and researchers to share their findings about the syndrome.
“There is too much of an attitude that autism is hopeless and incurable,” said Ellen Bolte of New Lenox. “It is not. We just haven’t found the answers yet.” Bolte, 40, a member of the CAN Foundation’s state board of directors, looked for a medical diagnosis for her son’s autism, and her research led her to the national organization.
Andrew, 6, the youngest of four children, was diagnosed with autism at 25 months old.
“He had very normal development,” Bolte said. “He deteriorated very quickly between 18 1/2 and 19 1/2 months old. It was like a freight train slamming into a concrete wall. All his systems shut down.” Andrew withdrew from family members and became a “screaming, shrieking” child who alternately rocked and banged his head against the wall. After months of medical testing, doctors delivered the diagnosis: Andrew had autism.
Misconceptions about autism abound. Medical researchers previously defined autism as a condition that manifested itself at birth, while some researchers theorized it was the fault of parents, mothers especially, who did not give their infants enough love and attention, said Cathy Steckhan of Orland Park. “More research dollars need to be allocated for a cure for autism,” said Steckhan, 43, who leads a local support group for parents of autistic children and helped organize a southwest suburban chapter of CAN.
According to current scientific research, the primary symptoms of autism are its early onset, usually between the ages of 18 and 24 months, with severe impairment of language, cognition and learning skills. These symptoms result in abnormal social behavior ranging from refusing to make eye contact to repeating certain actions.
A popular conception of autism comes from Dustin Hoffman’s portrayal of an idiot savant in “Rain Man.” The character, a genius with numbers, cannot handle the daily tasks of living or relating and often resorts to repetitive or ritualized behaviors when faced with new situations. That’s one type of autism, Steckhan said. “Autistics exhibit a wide variety of different characteristics,” she said.
Secondary symptoms can include seizures, hyperactivity and self-injurious behavior. Deafness and blindness are also common in autistic children. There is no medical treatment for autism, although there is help for specific symptoms. Drugs may be prescribed to control seizures, but early intervention programs for autism focus on behavior and stress speech, physical and occupational therapies.
“Support is critical for parents,” Bolte said. “There are a lot of misconceptions, and parents have to fight for everything.” At first, Bolte concentrated on educating herself about the syndrome and figuring out what therapies worked for her son. “But I couldn’t shake the feeling that it was something medical,” she said. “I didn’t want to just work with the diagnosis.”
Today Andrew is involved with speech, physical and play therapies, and he attends kindergarten at Little Friends, a Naperville school for children with developmental disabilities. He has improved: Andrew squeals and points and makes eye contact. “But I still want to know what happened at 18 1/2 months,” Bolte said. “There must be an explanation, and that means medical research.”
“When your child is first diagnosed with autism, you need support and education,” said Steckhan, whose autistic son, Kurt, 11, attends regular classes at the local junior high school. “But you eventually move toward acceptance and, finally, action.” Kurt was diagnosed with autism at age 4, although developmental delays were identified before he reached his first birthday. “We had to search for a correct diagnosis,” Steckhan said.
She became involved with groups that promoted awareness of developmental disabilities and eventually autism and helped found an informal parents support group in Orland Park two years ago.”We met to network, to share information and friendships,” she said. The group is in the process of becoming a CAN chapter.
The Cure Autism Now Foundation was founded in November 1995 in California by Portia Iversen and Jonathan Shestack following the autism diagnosis of their son, Dov, at 21 months. “This group was created by parents who were determined to support research by raising the monies themselves,” Bolte said, adding that the Illinois foundation was formed two years ago.
The national group has put together a Scientific Advisory Board from disciplines including neurology, biology, immunology, genetics, biochemistry and pharmacology and engages in fundraising, research and political action. Locally, CAN sponsored a conference in September in St. Charles that brought together nearly 300 parents and medical researchers from across the country. A second conference is scheduled March 21 at Pheasant Run Resort in St. Charles..
In addition, the Illinois organization is working with the Mike Royko Fund for Autism Treatment and Research to sponsor a celebrity golf outing July 13. The late Tribune columnist’s grandson, Ben, 4, was diagnosed with autism just after his second birthday, according to his mother, Karen Royko.
CAN is one of several groups working with the Royko Fund. Donations can be sent in care of the fund to LaSalle National Bank, Relationship Banking Division, Room 106, 135 S. LaSalle St., Chicago, Ill. 60603. The goal for CAN is to help fund research to find the cause or causes of autism. But the benefits hit close to home. “I find it helped me a great deal to become involved in an organization that promotes awareness and education,” Steckhan said. “It helped me to help my child and to share with other people.”
The Orland Park CAN group meets at 7 p.m. on the first Tuesday of the month at the Orland Park School District 135 Administration Center, 15100 S. 94th Ave. For more information about the Cure Autism Now Foundation, call 630-462-3250.
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.