A 'cure' for autism at any cost
Scores of parents abandon mainstream autism treatments to pursue Son-Rise, an intense, expensive — and unproven — behavioral therapy.
From the moment her 18-month-old son Sam was diagnosed with autism, Elizabeth B., or Liz, found it difficult to accept. When Sam failed to make much progress in an early-intervention program and, later, at a special-needs preschool in Manhattan, Liz consulted with his speech therapist. The therapist suggested Liz look into the ‘Son-Rise Program,’ taught at the Option Institute’s Autism Treatment Center of America in western Massachusetts. (Liz asked that we not mention her last name, out of concern for her and her son’s privacy.)
The name rang a bell with Liz. She had a vague recollection of seeing a 1979 made-for-TV movie called “Son-Rise: A Miracle of Love.” In the movie, a New York advertising executive named Barry Neil Kaufman and his wife ‘cure’ their son’s autism at home, spending more than eight hours a day immersed in his world and copying his behaviors.
The therapy seemed worth a shot. So in August 2005, Liz and her husband paid $1,623 in fees, left Sam, then almost 4, with a family friend, and drove to the institute’s 100-acre campus for a five-day Son-Rise ‘startup’ class. The angular brown buildings scattered in the woods give the institute the look of a New Age monastery. Adding to the monastic vibe, participants are advised to leave their valuables at home because the dormitory doors lock only from the inside.
Liz hadn’t anticipated how deeply the experience would affect her. Having a child with autism can feel isolating, and because Sam didn’t participate in school activities or have friends, she had few friends herself. But on the first day of the Son-Rise Program, as she took a seat on the floor of the lecture hall with about 100 other parents, she immediately felt at ease. “You have a powerful sense that you are with cousins,” she says.
On Tuesday evening, Barry Neil Kaufman, known as “Bears,” made his rounds in the dining hall, clad in his usual getup: a blazer and a black turtleneck. Liz found his message of love and acceptance intoxicating and, for the first time since Sam’s diagnosis, felt she had a way to help her son. When Kaufman spoke of children with autism as having limitless potential, his words resonated strongly with Liz.
Over the next four years, she spent nearly $50,000 on Option Institute programs, both for Sam, her husband and herself, and to train as a mentor for other parents. Although that amount may seem extreme, she is hardly alone: More than 30,000 families from more than 120 countries have participated in the Son-Rise Program over the past three decades, according to the institute. Some families pay full price to attend multiple courses, others receive scholarships from the institute, and a few even resort to crowdfunding. “Your generosity would allow our beloved son to experience the best treatment available,” reads one plea to raise $25,000 on the GoFundMe website.
The prices at the institute are especially steep given that states such as California and New York pay for a wide range of evidence-based interventions. Son-Rise startup classes are advertised as $2,200 per parent; an ‘intensive’ course, attended by parents and children, can run to $18,000. “Should you be selling your house to pay for this extraordinarily expensive program?” asks Catherine Lord, founding director of the Center for Autism and the Developing Brain at New York-Presbyterian Hospital in New York. “That’s where we are getting worried.”
Investing in Son-Rise, experts say, is a little like buying a lottery ticket. “I’m not aware of any rigorous scientific evidence that supports it,” says Fred Volkmar, head of the Autism Program at Yale University. There are no independent clinical trials or scientific studies of Son-Rise to back the institute’s claims that the program “helps parents cure their children in some cases” and “achieve significant improvement in almost all cases.”
At the same time, autism researchers express frustration that the Kaufmans discourage parents from combining Son-Rise with proven behavioral therapies and direct them instead toward alternative treatments, such as horse therapy and homeopathy. Some former employees Spectrum interviewed describe the institute as rule-bound, lacking in transparency and focused on fundraising. The Kaufmans, they say, control nearly every detail of the program and demand unstinting loyalty from staff and commitment from families.
Bryn Hogan, executive director of the institute’s Autism Treatment Center of America and the Kaufmans’ daughter, says that the center welcomes more research on its programs and that the criticism it’s received is unfair or inaccurate. “People tend to be suspicious of things they don’t fully understand,” she says.