Son-Rise costly and controversial

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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 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.

In his now-discredited 1967 book, “The Empty Fortress,” psychoanalyst Bruno Bettelheim blamed cold, unresponsive “refrigerator mothers” for autism and recommended institutionalizing their children. At the same time, psychologist Ole Ivar Løvaas had started to advocate the use of rewards and punishments to help children on the spectrum communicate more and harm themselves less. His approach, which now falls under the umbrella of applied behavioral analysis (ABA), is the most widely used therapy for autism, but it is not without controversy. Some adults on the spectrum who have experienced ABA decry the idea of forcing children with autism to conform to neurotypical standards of behavior.

Son-Rise, by contrast, is intended to tap into the well of unconditional love that parents feel for their child. Although the Option Institute declined to make Kaufman available for interviews, he responded by email to questions regarding this article. He also described the method and its origins in detail in his 1976 memoir and in subsequent publications and videos. With dark, expressive eyebrows and a snow-white beard, Kaufman looks less like a young James Farentino, who plays him in the movie, and more like an aging folk singer.

The Son-Rise story, as Kaufman relays it, begins with his third child, Raun. As an infant, Raun had a severe ear infection that nearly killed him, and he subsequently retreated inside himself. By the time he was about a year old, the curly-haired boy spent hours each day rocking back and forth or spinning plates on their edges. When he was 18 months old, doctors diagnosed him with autism and an intelligence quotient (IQ) under 30. In the Son-Rise movie, which is based on Kaufman’s memoir, one physician tells Kaufman and his wife she can do nothing for Raun until the boy is 3 years old and, even then, it will make little difference. “Wait a minute, wait a minute, Dr. Field. Are you saying autism is not curable … it’s not treatable?” Kaufman asks.

“I’m saying that we can’t offer him much hope,” the physician replies.

Instead of trying to quell his repetitive ‘stimming’ behaviors, as an ABA therapist might do, she joined him. And after five months, Kaufman says in his memoir, Raun was speaking more, eating by himself and playing with family members. The parents continued to work with their son for three more years — at which point he bore “absolutely no traces of his original condition.”

The institute often features Raun in its advertising and plays up the contrasts between Son-Rise and ABA, criticizing the more widely accepted approach for having lax training standards for facilitators and creating “robotic” children. In 2010, for instance, Raun produced a series of videos that were a play on the “Get a Mac” ad campaign from the early 2000s. In his version, a slouching nerd in a tie represents ABA, whereas Raun, sporting a hip goatee and a black leather jacket, embodies Son-Rise. “Would you rather your child be able to perform 25 scripted behaviors or would you rather he be able to relate to people?” he asks.

Hogan says that her adopted daughter, Jade, now 22, has also “recovered” from autism thanks to Son-Rise. (Jade was never diagnosed outside the institute.) For decades, recovery stories like this confounded researchers, who characterized autism as a lifelong condition. When they came across a child who seemed to lose his diagnosis, they often assumed he had initially been misdiagnosed. In her 1996 book, Siegel has expressed skepticism about Raun’s autism diagnosis alongside her doubts about the program.

Since that time, however, opinions about the permanence of an autism diagnosis have started to shift. A 2008 review of autism outcomes reported that between 3 and 25 percent of individuals with autism may eventually outgrow that label. Rather than calling these children ‘cured,’ researchers prefer to say the children have achieved an ‘optimal outcome.’ Some of these children become virtually indistinguishable from their neurotypical peers, says Deborah Fein, professor of psychology at the University of Connecticut, who has led much of the research. Magnetic resonance imaging (MRI) scans, however, reveal that the children recruit different brain areas during certain language comprehension tasks than typical children do. The finding suggests that instead of recovering, these children find ways to compensate for their neurological differences.

But after 30 years, there is no independent evidence that the program leads to success stories like Raun’s or Michael’s — or even modest improvements like Jay’s. In fact, at least one study has found that the intensity of the program can sometimes increase family stress levels. That 2003 survey of 87 parents who had pursued Son-Rise concluded that the program “led to more drawbacks than benefits for the families over time.” Part of that may be a matter of expectations. In 2009, the United Kingdom’s Advertising Standards Authority sanctioned the institute for misleading the public after they ran an ad touting Son-Rise as an autism “cure.”

In 2013, psychologist Kat Houghton, a former employee of the Option Institute, published the first attempt to evaluate the Son-Rise Program, studying only 12 children with autism. According to court records, the institute agreed to pay Houghton $16,500 to gather, code and analyze data for the treatment study, but Houghton did not disclose any conflict of interest in the published article. Houghton directed questions about the research funding to psychologist Charlie Lewis at Lancaster University in the U.K., who is a co-author on the study and her Ph.D. advisor. Lewis says he was unaware that Houghton was explicitly paid for that research, but that they had both been “passionately committed to an unbiased study design and a completely independent research process.”

Last year, two researchers, including one of Houghton’s co-authors, tried to gauge the program’s effectiveness from another angle, surveying 49 parents who had attended two five-day Son-Rise courses at the institute. But they based their positive conclusions on the parents’ subjective assessments. Anecdotally, at least, negative reviews of Son-Rise from parents are hard to come by. Spectrum spoke with a number of parents who felt the program had given them powerful tools for connecting with their children, though they disliked the program’s rigidity. Some, like Liz, ended up feeling deeply conflicted.

Today, the upper ranks of the Option Institute are mostly members of the Kaufman family, who have a home on the campus. In 2015, Bears and Samahria Kaufman receive a combined salary of approximately $240,000, along with $260,000 for the lease of the property on which they built the campus. Combined with donations and other unspecified sources of income, the institute’s annual revenues approach $6 million, according to tax documents. The Son-Rise Program brings in more than $2.5 million of that through classes held in the United States, the U.K., Singapore and other countries.

They are impressive earnings for an intervention that, even when it helps, may not lead to sustained improvements. In Sam’s case, for example, his progress tapered off after his initial gains. At almost 16, Sam has just completed 8th grade in a special-needs class, where he was taught ‘life skills,’ such as making coffee with a Keurig machine and selling it to teachers. “Their expectation of his development was so low,” Liz says.

Are you just sharing information? Looking for an opinion?

It was an interesting read. I'm skeptical, thought it doesn't sound as potentially damaging as some of what I've heard about ABA. Wait an see I guess. If it's legitimate research should not be that hard to compile.

Not as damaging can still be damaging.

The program has been around for decades enough time to gather evidence.

I wasn't saying it was acceptable, only that other methods, like ABA, that appear worse, have already reached a certain level of acceptance, or have even reached mainstream. I wondered, without judgement, why this is controversial when others are not. Perhaps I am just unfamiliar. For the record I hate ABA. This is the first time I've heard of Son-Rise. Thank you for raising my awareness.
I saw the original date but had it in my head it was a thing back then, died off, and this was some kind of resurgence. Yes, clearly there should be evidence by now. The fact that there is not, by now, should immediately discredit it.