Son-Rise Rises Again
After attending a conference in London run by the Autism Treatment Center of America—aka the Son-Rise Program–a family is seeking to raise 10,000 pounds (= about $18,818)—to send their autistic four-year-old son, Thiago, to this “pioneering course in America which is [sic] claimed could cure his autism,” according to an article in today’s Guardian. Mark and Simone Taylor (who says that she has Asperger’s Syndrome) are holding fundraisers in the UK and in Spain to raise the money.
I more than understand the Taylors’ needing to do as much for Thiago as they can. However, I would like to know if they have taken into account not only the “pros” of the Son-Rise Program but also the “cons,” as stated on the National Autistic Society’s website.
Apart from the costs of the Program, a major criticism of Son-Rise is that the Options Institute has never allowed or carried out any formal research on the effectiveness of it. It argues that it does not have the resources to carry out any large scale evaluation of the success rate (Kaufman, R. 2002), but it is said to have also turned down external researchers’ requests as well. Jordan (1993) points out that the informal, successful reports there have been of the Program have been with young children and there are no reports on older children (Jordan 1993)…….
On April 4th I wrote The Autismland Dream, an Autismland post that notes that the director of the Autism Treatment Center of America, Raun Kaufman, is a sort of “autism treatment guru.” According to the Autism Treatment Center’s website, Mr. Kaufman
…was diagnosed as severely and incurably autistic” and “recovered” from this “‘hopeless, lifelong condition’” by his parents, Barry (”Bears”) Neil Kaufman and Samahria Lyte Kaufman. The Kaufmans’ program was “unique” from other methods (unspecified on the website description of their method for treating autism). Their program “transformed Raun from a mute, withdrawn child with an IQ of less than 30 into a highly verbal, socially interactive youngster with a near-genius IQ.”
………
Mr. Kaufman terms autism …. a “relational, interactional disorder” and his treatment plan calls for teaching a child to enjoy learning–to be motivated to learn–rather than the dull drill of “traditional methods” (not otherwise specified, though ABA seems to be referred to here).
This sounds too good to be true—–or at least something that parents ought to scrutinize more than carefully before spending $18,818.00.
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POSTED IN: Autism Organizations, Fundraising, Treatment, Uncategorized
12 opinions for Son-Rise Rises Again
Jannalou
Jun 2, 2006 at 10:52 am
My main criticism of the Options Institute’s approach to autism (and, indeed, all disability) is that much of the “therapy” is geared towards getting the parents to love their child. Because supposedly, if you love your child enough, they will “choose” to “come out” of autism.
I have read Bear Kaufman’s books and seen the movie made of Son-Rise, and honestly… all they did was behaviourism. It killed me to watch a documentary about it, because they locked the kid in a room and wouldn’t let him have his parents or his parents go to him, when it was obvious that was all he wanted. All the good stuff is kept way up on a shelf, so the kid has to verbalize to get any fun toys. The room is bleak, and bare, and boring. How is a therapist even supposed to come up with something to do with a kid without toys and stuff to draw the child’s interest?
(I know a couple of autistic adults who swear up and down that Raun is definitely autistic; I also know a number of people who like to clarify that he was never actually diagnosed with autism before his parents started their “revolutionary” treatment program.)
I have more info on this; I could do a blog post of it if you like!
Kristina Chew, PhD
Jun 2, 2006 at 11:19 am
That would be a post I will look forward to!
What evidence do those who say Raun Kaufman is autistic base this on? I understand he was never diagnosed with autism and many elements of Son-Rise sound like other treatment/education programs—-it is hardly “pioneering.”
Jannalou
Jun 2, 2006 at 12:12 pm
Those who say he’s still autistic swear he’s got a lot of autistic traits still (probably Aspie-ish). And apparently they got him to rock at a conference. It was pretty funny when they told me about it. That was a few years ago.
I’ll make that blog post now; hot, lazy summer afternoon and I have no more work to do anyhow. (If I didn’t have to wait for people to come in to pick up their invitations to the service on Sunday - Prince Edward will be there - I’d be on my way home now!)
serge's dad
Sep 5, 2006 at 10:22 pm
I loved the book, it was an inspiration (but I didn’t believe a word of it)
Kristina Chew, PhD
Sep 6, 2006 at 5:49 am
But it was still inspiring?
johanna
Mar 6, 2007 at 9:01 pm
Why is that people is so judgemental?Have you been in the program?I had and it was the best thing I never did for me and my child.I met a friend’s child completly recover from autism.As long as you think autism is not treatable that is what you are going to have as a result.People should ask parents who actually been there not the s called “experts”who will dischard your child from society.All open minded parents I invited you to investigate this program before you decide to turn away.
Kristina Chew, PhD
Mar 6, 2007 at 10:48 pm
Thanks for commenting here, Johanna. My husband went to an informational session with Raun Kaufman and I think we concluded that it did not seem the right program for our son.
des
Sep 23, 2007 at 3:29 am
I was one of the original aspies that guessed that Raun was high functioning autistic. I have found myself quoted over and over.
des
Sep 23, 2007 at 3:51 am
I found this kind of dead blog discussion while doing a search on Son rise.
I was one of the original aspies that guessed that Raun was most likely high functioning autistic. (He– or I have always thought, one of the staff–wrote back a scathing letter saying that if everyone thought as I did that he would be in an institution playing with his feces.) I have found myself and “Raun” quoted over and over, its rather funny actually. There were all kinds of statements in one of the books (that I admittedly didn’t read) that described some of his interests, things like time travel, etc.etc. It was like if you saw a description of a kid who loved Thomas Train, outer space, computers, etc etc. I think this should be in the DSM. :-)
I also don’t think anyone is “cured” of autism. I think that kids who might do well (even with no real program as such) probably do well in various treatments. It is pretty well established that you can’t tell by looking at a very young kid with hfa from a low functioning young kid, afaik.
Since Raun was diagnosed so young, it stands to reason that his family would have had little idea of his eventual prognosis. (Actually it was not an official dx. but I have little doubt that he was/is on the spectrum somewhere). I’m actually rather appauled by the no. of people claiming that autism is like some kind of disease that is curable. ABA has a particularly bad history of this kind of thing, so you know they are competing with ABA.
I actually approve of some of the Son Rise ideas. Anyway there are other programs around these days that don’t have the price tag and use some similar techniques like DIR Floortime and RDI.
At least the developers of these recognize they don’t cure autism.
It remains questionable that you would want to eliminate all traces of a condition that has certain advantages (like a strong visual sense). Some autistic people will get furious on this topic, btw.
I have seen a lot of good anecdotal reports on Son rise, but as I said I think it is an educational approach (that other methods share).
BTW, I heard a radio interview of Raun. He seems quite articulate. This in no way means he does NOT have hfa.
–des
Jessica
Jan 14, 2008 at 2:52 am
It is the 3rd time I run into this website while doing research on the son rise program. Jannalou lovong your child is very different than having faith and hope. I see the progra, offers hope and does not emphasize on how much love you can pour over your child and he or she magically improves. The program offers a ray of hope to those parents who want to try it. Another thing, I am not sure if you have children but limiting a child to encourage him to grow is not torture. The child is not locked in there forever, he has to make adjustments and that may mean not being with his parent for a couple of hours. That is very similar to leaving a child in day care and he throws a fit because he wants his mom. To you the room is bleak and boring but to them it becomes a safe placewhere they are not overwhelmed, how is that harmful? The good stuff on the shelfs is to encourage the child to seek other means besides himself to obtain them and yes you can be creative as a therapist the toys will be your tools to reach him with minimal distractions. I truly do not understand why chew down on a program that has brought hope and presents amazing recoveries in many cases. Johanna, I agree with you, ask the parents and look at the way the children respond to therapy. Des, what kind of a comment is that? Wow you must have it all figured out! You havent read the book but already stated its like a description of Thomas Train? Outer Space? Computers? What? so havent read the book but an expert on it?
Deborah
Apr 18, 2008 at 5:00 pm
18,000 is nothing! The 2 ABA based programs where I live are 64,000 and 68,000. Every insurance I’ve seen excludes coverage, and Early Intervention only gives twice a month. I guess the non-upper middle and on down can just commit crimes and get sent to jail or a state institution for their care.
Kristina Chew, PhD
Apr 18, 2008 at 5:41 pm
We know a few families who have done the Son-Rise program and, after initial excitement, they have not said much about it.
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