When a doctor told Susan Levin her 4-year-old son, Ben, was autistic, she was shocked. It was October 2007, and autism wasn’t mentioned in the media nearly as much as it is today.
“I remember thinking, ‘Oh my God. What are we going to do?’ ” Levin recalls. “Everyone knew autism was a lifelong disorder and couldn’t be cured.”
Except that in Ben’s case, it could be. And it was.
The family’s journey — the many treatments tried and dismissed, from biomedical interventions to speech therapy to occupational therapy and more — is detailed in her new memoir, “Unlocked: A Family Emerging From the Shadows of Autism.”
Levin doesn’t call this particular cure a silver bullet for autism: There is no silver bullet, no one-size-fits-all approach. Rather, she credits his transformation to a number of things, including a home based and child centered social-relational program called the Son-Rise Program.
“Over the years I’ve been privy to a million parents, a million cures,” says Andrew Baumann, president and CEO of New York Families for Autistic Children. “Parents are willing to try just about anything.” And while he concedes that diet can have a very positive effect, he just doesn’t see it as a cure for autism: “You can’t cure something [when] you don’t know what the cause is.”
Steven Novella writes that the Post article is pseudoscience:
There does appear to be room for larger rigorous trials [of dietary interventions], but over 40 years of research has failed to find any signal in this data. It is also possible, as some of the authors note, that children with autism might also incidentally have food allergies or insensitivities, and removing this food will have a positive effect on their behavior simply because it is removing an irritant. There is no evidence to suggest, however, that gluten or casein is playing any causative or significant role in the etiology of autism itself. There is no diet that treats autism, let alone is a cure.
If you’re interested, Paul Offit reviews diet and other fake cures for autism in his book, Autism’s False Prophets. He goes into more detail about the history of the gluten and casein-free diets for autism.
Dawson and other journalists writing for the “Living” section of their newspapers should really just not write about science. In this case she failed to consult or listen to any experts on the topic, she relied upon misleading anecdotes and the pronouncements of gurus. She failed to properly reflect that state of the research, or mention the common caveats in interpreting these stories. In short, anyone reading her article would be significantly misled about the science.
This is also a serious issue that directly affects peoples lives. Parents of children with autism face a daunting amount of misinformation. In this case they are being told that they need to put their child on a draconian and expensive diet, and will be made to feel guilty if they don’t. This is just magnifying the burden that raising a child with a developmental challenge can pose. This type of misinformation causes direct harm.The Association for Science in Autism Treatment says:
Description: The Son-Rise Program was developed and trademarked by Barry and Samahria Lyte Kaufman decades ago. The program offers training sessions to parents and others on how to implement home-based programs for children with a wide range of disabilities. The program is based upon the Kaufmans’ own personal theories of learning and development. A central principle of the Son-Rise program is that parents must convey an attitude of “total acceptance” of their child including all of his/her behaviors. The training that the Kaufmans offer places emphasis not on the child’s skills, or behaviors, or challenges, but more on the parents and caregivers.
Research Summary: There have been no scientific studies of Son-Rise for individuals with autism spectrum disorders.
Recommendations: Researchers may wish to conduct studies with strong scientific designs to evaluate Son-Rise. Professionals should present Son-Rise as untested and encourage families who are considering this intervention to evaluate it carefully.