[Note: This article is for archive purposes in Autistic History. It’s to illustrate the the voices heard during this era. It’s to show how the Wrights, co-founders of Autism Speaks, and pals used their privilege purposefully to drown out the voices of the Autistic community and others.]
Inside the autism treatment maze
No single approach is best for every child
By Jane Weaver
Updated: 9:12 p.m. ET Feb. 23, 2005
Every child who receives the diagnosis of autism may be different, but the families of those children face the same overwhelming challenge — finding the best treatment for the complex condition.
While there has been significant progress in easing symptoms of autism and educating children diagnosed with the disorder, there is little agreement among doctors, parents and researchers over which type of treatment most effectively helps an affected child grow into an independent adult. Parents can find themselves confronted with a confusing maze of often expensive strategies and methods, some of them promising miracle cures but backed by little or no medical evidence.
“With autism, the variation in treatments is huge,” says Laura Schreibman, an autism researcher and professor of psychology at the University of California at San Diego.
“Parents not only have to deal with the emotional impact of the devastating diagnosis, [but] there’s no clear course of where to go. The amount of garbage that’s out there and what parents have to sift through is truly astounding.”
For many kids, autism treatment involves some combination of intensive behavioral therapy, speech and language therapy and special education in public schools. Anecdotal reports support newer forms of play-based behavioral therapies and alternative methods involving vitamins and dietary restrictions, although many autism experts vigorously disagree over whether these offer benefit.
‘The beginning of this journey’
“We do have some important knowledge in treatment of autism, but we’re still very much at the beginning of this journey,” says Geraldine Dawson, a professor of psychology at the Center on Human Development and Disability at the University of Washington in Seattle.
Since autism was first recognized in 1943, the search for an effective treatment has been frustrating for those involved. Once promising medical treatments have later been shown in tests to have no benefit.
Research supporting newer or alternative treatments is lacking. The causes of autism are unclear, and the wide range in the type and severity of a patient’s disabilities can make it particularly challenging to select a specific therapy.
Early diagnosis, now being given to children as young as 8 months, improves the chances of treatment success, experts say.
“We know that most children, but not all because we can’t guarantee, do well with early intervention,” says Dr. Fred Volkmar, a professor of child psychiatry at Yale University and an expert on autism.
But the report stopped short of endorsing any particular treatment beyond education and support for parents, noting that the type of treatment might differ depending on the child.
“There is no one treatment that is going to work for all children or one treatment that is going to do everything for any given child over a long period of time,” says Catherine Lord, director of the autism and communication disorders program at the University of Michigan in Ann Arbor and chairwoman of the National Academy of Sciences expert panel.
Many children with autism have additional problems such as gastrointestinal illnesses, sleeping difficulties or anxiety that can complicate treatment, researchers also note.
A treatment program called Applied Behavior Analysis (ABA), which is based upon a rewards system, is widely accepted by parents and doctors largely because it is the most researched and is supported by numerous anecdotal success stories. ABA is considered especially beneficial for children with more severe symptoms.
ABA calls for one-on-one interaction between a teacher and a child for up to 40 hours a week. In the highly structured program toddlers receive positive reinforcement for initially learning simple actions like identifying colors and then gradually working up to more advanced activities that target deficits in learning, language, play-interaction and attention.
Advocates of this behavioral therapy pioneered by Dr. O. Ivaar Lovaas, professor emeritus at the University of California at Los Angeles, point to a study published in 1987 that suggested that with a comprehensive ABA program of 40 hours a week, about half of kids with autism were indistinguishable from other kids at age 7. But even within the field, the research has been questioned.
“No one else has been able to replicate that,” says Lord. “That finding was an anomaly.”
Other researchers like Schreibman support more varied, less structured programs than the intensive 40-hour ABA. Such methods include Floortime, which gets children and therapists down on the floor and engaged in imitation play, and the Denver model developed by Sally Rogers, which integrates speech and language therapy and focuses on helping children with autism form relationships with their peers.
“Young people tend to learn better from people their own age, they watch the people more, and putting the kids with other kids allows them to learn appropriate behavior for their age,” says Robert Hendren, a psychiatry professor and executive director of the MIND Institute, part of the University of California at Davis Medical Center, which focuses on the causes and treatments ofautism.
A variation of behavioral treatment is the classroom-centered TEACCH program, which uses visual cues to help children focus their attention. “A lot of our intervention is based on teaching organizational strategies and skills,” says Gary Mesibov, director of the TEACCH program, based in Chapel Hill, N.C.
One of the most controversial treatment methods, a detoxification treatment called chelation therapy, has been gaining acceptance among some doctors and parents. Based on the theory that exposure to heavy metals, particularly the mercury preservative in some children’s vaccines, is behind some cases of autism, advocates claim chelation is an effective treatment.
“There is no question that chelation, taking the mercury out of the kids, is by far the most effective treatment available,” says psychologist Bernard Rimland of the Autism Research Institute in San Diego.
Others warn that it could harm the child.
“Chelation brings risks of its own,” says Dr. Eugene Arnold, a psychiatry professor at Ohio State University in Columbus. “A doctor shouldn’t do chelation therapy unless [body] tissue tests show high levels of mercury or lead.”
Because it’s so difficult to match the child to a treatment, desperate parents often experiment with multiple therapies at the same time.
An estimated 30 percent of parents try alternative therapies like special diets, vitamin treatments or other non-traditional methods on their children, according to a 2004 study from The Children’s Hospital of Philadelphia. Many parents also enroll their children in music and vision therapy or programs like horseback riding and yoga to help develop motor skills.
Unfortunately, doctors can’t yet predict which children will benefit from a particular program or whether a child will ever fit into a regular classroom. Even with treatment, about 25 percent of children never develop language skills, according to researchers. On the other hand, about 25 percent are able score in a normal range for their IQ and to function in public school.
Federal law requires public schools to provide special education classes for children with autism, although programs vary from state to state and some parents prefer private treatment, especially for their younger children. Yet because of a lack of scientific evidence supporting certain therapies, parents often find themselves battling health insurers for coverage or suing school systems to provide home-based instruction.
“Some parents hire a lawyer before they meet the preschool teacher,” says Mesibov.
More From 2005
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.