Importance of staying away from Son-Rise, a modality for children with autism that lacks scientific evidence.
Parents should be cautious of any organization that uses parent testimonies and/or advertise a therapy that most specialists haven't even heard of.
Every study has shown time and time again that Son-Rise's practice differs from the way it appears to be in the literature and that "parental perception of [the] intervention" (K. R. Williams & J. G. Wishart, 2003) may have differed from the actual effectiveness of the intervention often "lead(ing) to more drawbacks than benefits for the families involved overtime" (K. R. Williams & J. G. Wishart, 2003):
Proof of the cult-like, family-ran business and their training sessions with the parents at the Autism Treatment Center of America, the division of The Option Institute that teaches The Son-Rise Program in the Berkshires of Massachusetts (the Kaufmans, by the way, used to live in a mansion in Roslyn Heights right here on the North Shore of Long Island, New York back in the 1970s):
From New York City, Catherine Maurice (editor-in-chief - along with the leading behavioral psychologists - of the best-selling, gold-standard Applied Behavior Analysis (ABA) training manual for parents and clinicians in 1997, as well as a founding board member of the Behavior Analyst Certification Board and founder of the Association for Science in Autism Treatment (ASAT), which Dr. Bobby Newman (who ran my home ABA program when I was little) was the president of from 2003 until Catherine's retirement in 2006) wrote a book that was published in 1993 about her two children who fully recovered from autism after obtaining home-based early, intensive ABA therapy; they were even evaluated by Lovaas' clinic at UCLA months after his famous 1987 study was published.
This is what a female staff from The Option Institute told Catherine in the early 1990s when she called to ask them about their recovery and success rates:
"Oh success rates. That’s a funny thing about success rates. I mean what do you mean by 'success rate'? We have a lot of different children here with a lot of different problems... I mean why do you want to know about a success rate? Because you want to prove that you can be successful?"
When I was 16 after my mom called them about me training there when I turned 18, this is what they said:
"Your son probably turned out the way he did because of the ABA. The thing is the Kaufmans’ here have a very specific philosophy of teaching and if parents decide to become involved in other programs than it doesn't stay true to the Kaufmans' ways. However, if you were willing to work for us as a maid, and you and your son lived here with us, and we got to know you and your son better maybe we'd consider it."
What I heard Samahria Lyte Kaufman (Raun’s mother and co-creator of Son-Rise) say in a podcast about seven years ago on their Autism Treatment Center of America's website (while she laughed):
"I know we put in a lot of the marketing materials [especially in the 1970's film and book] that it was at the end of the plate spinning that Raun first smiled and looked at me since he became autistic. This is what really happened. I was actually getting tired of the plate spinning. So I tried introducing a new activity like dominoes. And Raun didn’t even know what to do with it so he threw it at the corner of the bathroom. Then, I 'joined' him in throwing the dominoes at the corner of the bathroom, and by the midst of it, I didn't even at first realize that Raun was smiling and looking at me for the first time."
My dad told me he recalled watching the Son-Rise: A Miracle of Love movie thirty times and cried each time.
In Catherine Maurice and Dr. Gina Green's 2001 sequel ABA training manual, they wrote of a mother's dissatisfied experience with the pamphlet of treatments she ordered in the mail from the Autism Society of America (and every treatment listed - including Son-Rise - all turned out to be scams).
When this parent called The Option Institute, they weren't able to provide her with information about their success rates and couldn't offer her a 5-day parent training course, which they were charging $6 thousand for, until six months because they were packed with families.
But they were able to send her the Son-Rise: The Miracle Continues book written by the founder and owner, Barry Neil Kaufman, and referred her to connect with other parents who found Son-Rise to help their child. Each parent she spoke to said they saw the progress each day and told of how they teach you about having "(full) acceptance of the child" (p. 13), as well as to provide them with "a 'non-judgemental attitude' " (p. 13), but they also noted that their child didn't turn out like Raun Kaufman did, even though each insisted it was working.
So the mother did exactly what Samahria Kaufman did in the Son-Rise book by locking her daughter in the bathroom and imitating her stims and other repetitious activities, which included arranging and rearranging the rows of objects on the floor for 10 days. The mother recalled that, within those 10 days, her daughter only continued to withdraw more and more into herself.
In fact, 6 years ago, the Association for Science in Autism Treatment’s (ASAT’s) - Catherine Maurice's previously noted organization - website wrote an open letter to Raun Kaufman asking him to take those videos off YouTube (of him as Son-Rise versus a guy in glasses as ABA), rightly accusing him of false marketing with misleading and inaccurate information about ABA which could be "abusive to emotionally vulnerable parents."
Further, the open letter mentioned that due to Raun giving a lecture to parents in the United Kingdom (UK) on how to use Son-Rise to cure their child from autism in 3 days back in 2009, The Option Institute/Autism Treatment Center of America was, as a result, chastised by the UK Advertising Standards Authority "for false advertising." And they also pointed out that "any study showing [Son-Rise] to be effective has been long overdue as the methods promulgated by [their] center has been tried and failed for nearly 30 years."
After I attempted to explain to Raun Kaufman on the center's official Facebook page in August 2015 that what they said on YouTube -- 'no one has ever been able to reproduce Lovaas’ 1987 results since' -- was misleading to parents and not accurate as there were three replications of that study (the second of which in the American Journal on Mental Retardation by Sallows and Graupner (2005) did reproduce such results) and how ABA-based interventions, which no longer uses "gentle smacks or a loud 'no!'," are the only set of therapies for autism approved by the Surgeon General and New York State Department of Health (both since 1999), as well as the National Research Counsel, and American Academy of Pediatrics, he replies:
"Thanks for the information, Eli. I still know many people who find Discrete Trials to be verbally and physically abusive to the child -- especially with its approach toward eye contact."
Further, I cannot believe how many parents were tagging me on the center's Facebook page claiming, "Here's thing, Eli Allen. ABA is designed to show progress" and "someone keeps responding on here whose name will remain anonymous but seems to advocate as though he is a high ABA fan."
Raun Kaufman also told me (Reminds me of Dr. Martha Welch, a female psychiatrist from New York City who founded the controversial treatment known as Holding Therapy and is currently the leading professor and researcher at Columbia University at the age of 71, telling Catherine Maurice that autism was caused by bad parenting and when Catherine was so initially involved with the psychiatrist's approach, she would end up with blisters and bruises all over her body since her daughter didn't like to be touched back when she was autistic):
"Well of course the research shows our approach might differ from how it appears to be in the literature. It's a parent-ran program..."
Since the co-founder and CEO, Barry Kaufman (Raun’s father) is a campaign manager when he passes away there will be no one able to successfully market the place and they will probably go out of business.
Let me also compare the videos of my parents living with me at The Option Institute and being trained by the staff there versus the BBC documentary special, I Want My Little Boy Back; the latter of which depicted a family being trained by the staff there:
The boy, Jordan, begins his first session by having the playroom door closed and shut with a facilitator or parent working one-to-one with him the whole time.
My video tape (back when I was 3 years old): There is a part when I walk out of the playroom and I'm kneeing down by myself on the middle of the stairs in the dark throwing dirt particles as the Son-Rise child facilitator "plays" with me from inside the playroom with the door wide open.
BBC documentary special: When the parents don't implement the methodology properly, the staff come in and redirected the family how to implement the procedure.
They did not do that with my parents. They only tried explaining it to them during their "usual" Option Dialogue sessions with my parents there one-to-one with a staff member (i.e., with Samahria Kaufman, Raun Kaufman, Bryn Kaufman, William Hogan (Bryn’s husband), Kate Wilde, etc.). My parents acknowledged then that they still didn’t understand. They did do those dialogue sessions outside of the playroom in a dark hallway with a one-way, rear-view glass window (as it appears to be in the marketing though). The staff also implied at the end of the week that my parents misapplied their techniques but left it up to them to decide "since it's a parent-ran program," and my parents were very loving and playful with me in the playroom.
I didn't respond weeks after I came home using their approach, but before we left, my father recalls Barry Kaufman telling him that "there is always hope" after spending $1,200 for a one week training session (aka Start Up Program). Now, however, they charge $2,600 for their Start-Up Programs' without the child at the center where the staff just do counseling sessions with the parents there and then charge an additional $6,000 for a Maximum Impact (which is when the parents take their child with them).
As I noted above, on their official Facebook page in August, Raun Kaufman tells me "Of course, the research shows that our approach is not always implemented as it is described in the literature. It’s a parent-ran program. I promise you everything we do here is exactly as it appears to be in the literature" was not accurate because they don't guide the parents in the playroom how to do a procedure (like it appears to be in their marketing and in the BBC documentary special).
Over the past couple of years, Son-Rise's website (see here: autismtreatmentcenter.org) have been marketing that they're scientifically proven from a recent study that showed them to be effective for improving social-communication skills but the study concluded by stating "how caution (should be) warned" as the control groups were chosen by the parents based on whether they decided to attend a Start-Up Program or not, and it noted that the parents could've been "positively inclined towards the benefits of The Son-Rise Program" before they underwent treatment. It then added how more studies should "examine the interaction between parental attitudes and [actual] behavioral improvement resulting from [the] intervention."
Parents should stay away from Son-Rise, which although had helped some families, are nothing more than a scam and they seem to be more concerned with making parents feel better than actually guiding them on how to implement their procedures (which is why there has never been a valid study on Son-Rise) nor can they acknowledge the validity of scientific procedures (particularly, ABA) and they seem to have lost touch with today's world and haven't realized that ABA is nothing like it was back in the 1970s through early '80s. It was a different time and world when Lovaas and colleagues at UCLA yelled "no!" if the child responded incorrectly, as well as spanked and electric shocked them as a last resort if they couldn't be restrained (and that's not how Discrete Trials are practiced today).
In addition, Dr. Bryna Siegel, a leading developmental psychologist from San Fransisco, California, wrote in one of her books in 1996 that she works with two of the clinicians who evaluated Raun in the 1970s. They - in addition to all of the other clinics in New York who evaluated him - didn't think Raun displayed any signs of autism but did note he was socially withdrawn and uncommunicative. It was only the sixth and last place that evaluated him that thought he was autistic.
This is rather interesting to note, as I recall reading the book, Son-Rise: The Miracle Continues (the latter of which featured lovely quotes by Coretta Scott-King, Jimmy Carter, and Dr. Carl Rogers) and even watched the 1979 spin-off NBC docudrama Son-Rise: A Miracle of Love back when I was in middle and high school. The book depicts Raun’s pictures in the early years looking very isolated - none of which showed him flapping his hands or spinning plates (like it appeared to be in the movie - which won a Humanities Award - and as Barry wrote in the book). One picture did, however, depict Raun looking like he was about to rock in front of his mother, with his sisters rocking parallel to him and the caption writing that "his sisters joined him in his 'rocking motion.' "
The few black-and-white home videos they do show of Samahria working with Raun in their bathroom in the 1970s (which are featured in their marketing videos for their agency) never showed him spinning plates or hand flapping either. The home videos actually depict Raun’s eyes being dilated and he appears quite frightened. Raun also keeps looking away as Samahria attempts to reengage him by wagging her finger at Raun. Then, another video shows Samahria holding Raun in her arms before he leans over her shoulder and sucks his thumb (none of this was mentioned in Barry’s book or depicted in the movie).
No one knows what really went on with Raun in the 1970s and all The Option Institute is good for is marketing and brain-washing parents in their training sessions by teaching them how to "love and accept their child unconditionally" (and all their good for is taking families' money away). And instead of guiding parents, if they misapply a technique (or the child doesn't respond), it seems that the Kaufman family believe it is the parents' fault.
ASAT's open letter to Son-Rise Program®'s Raun Kaufman. (2010, Sept. 20). Association for Science in Autism Treatment.
Maurice, Catherine. Let me hear your voice: A family’s triumph over autism. New York: Ballantine Books, 1993.
Maurice, Catherine, Green, Gina, and Luce, Stephen C. Behavioral intervention for young children with autism: A manual for parents and professionals. Texas: Pro-Ed, 1996.
Maurice, Catherine, Green, Gina, & Foxx, Richard M. Making a difference: Behavioral intervention for autism. Texas: Pro-Ed, 2001.
Moran, K. (2014). Review of: Promoting child-initiated social communication in children with autism: Son-Rise® program intervention effect. Association for Science in Autism Treatment, 11(1): 23-24. Web.
Mruzek, D. W. (2012). Focus on science: 'Verification' and the peer review process. Association for Science in Autism Treatment, 9(3), 18-19. Web.
Myers, S. M., & Johnson, C. P. (2007). Management of children with autism spectrum disorders. Pediatrics, 120(5), 1162-1182.
National Autism Center. (2009). National standards report. Randolph, MA: National Autism Center.
National Research Council. (2001). Educating children with autism. Washington, DC: The National Academies Press.
New York State Department of Health, Early Intervention Program. (1999). Clinical practice guideline report of the recommendations for autism/pervasive developmental disorders. Albany, NY: New York State Department of Health.
Sallows, G. O., & Graupner, T. D. (2005). Intensive behavioral treatment for children with autism: Four-year outcome and predictors. American Journal on Mental Retardation, 110(6), 417-438.
Siegel, Bryna. The world of the autistic child: Understanding and treating autistic spectrum disorders. New York: Oxford University Press, 1996.
U.S. Department of Health and Human Services (1999). Mental health: A report of the surgeon general. Rockville, MD: U.S. Department of Health and Human Services, Substance Abuse and Mental Health Services Administration, Center for Mental Health Services, National Institutes of Health, National Institute of Mental Health.
Williams, K. R. (2006). The Son-Rise Program® intervention for autism: Prerequisites for evaluation. Autism, (10)1, 86-102. Association for Science in Autism Treatment.
Williams, K. R., & Wishart, J. G. (2003). The son-rise program intervention for autism: An investigation into family experiences. Journal of Intellectual Disability Research, (47)4-5, 291-299.