[Deleted User]

To: Ruth Wingein and Stephen Schertzer,
Thank you.
I'd like to add to this helplist The Attachment Theory by dr. Gordon Neufeld, which helped me a lot. Krystyna(Elizabeth's mom)

[Deleted User]

Hello all, I wanted to respond to some of the ideas being posted.

There has been some discussion of statistics in regards to recovery rate and mention that scientific studies are not completely generalizable to real life. Very true. I would however like to point out that Dr. Glen Sallows research does have some interesting information on children who received treatment through ABA home program models. I don't remember the actual number but the results were impressive.

I think it is imporant to remember two things when discussing the success of an ABA program: 1. improvement and growth is as important as recovery and 2. In order to consider whether one's program is effective, one must consider the quality of therapy being provided.

1. I too focussed on recovery when I first started my daughter and then later my son's programs. I wanted recovery. I may never see that day, many of us may not. While I've had to accept that this may never change, I am also aware that my children have grown, gained skills and achieved things that seemed impossible only a short while ago. Their lives have improved and continue to do so. If I remember correctly the Lovaas study made mention of this, that while not all of the children "recovered", all showed signs of improvement. THis is significant. Many parents on this board would agree that their children have experienced improvement.

2. Quality of therapy is important. We all want to provide quality therapy, but is everyone achieving this? Sadly, no. When my daughter's program began, our first consultant was not the best person for the job. While she had valid qualifications and was likely knowledgeable, she was not skilled at the type of behavioural input my daughter desperately needs. Not adequately trained or guided through the necessary behavioural interventions we needed, we were not maximizing our therapy potential.

We spent months making progress "academically" but not addressing the behaviours that were quickly becoming rigid and out of control. We were fortunate to work with a Sr. Therapist who helped to draw our attention to what now seems so obvious. AFter months (and months) of training, hard work and re-training and a new consultant we were able to improve the situation. We were fortunate. Not everyone has the opportunity to have someone so amazing come in and make these changes.

My children's lives have been greatly enriched through their aba programs. While I can't speak for other programs or for other families, I can say that the huge improvements we've seen only came when the underlying behaviour problems were addressed.

ABA is most effective when done properly. Due to lack of funding and a lack of local consultants, many of us have been disadvantaged in the therapy we are able to provide.

[Deleted User]

Hello,
I too would like get a few words in regarding not only Option therapy but the general attitude towards "scientific proof" which keeps popping up on the discussion board. Since most of you do not know who I am and since what I will say contradicts some of what you may have already held as "true" I will preface this missive by mentioning some of my qualifications: In addition to belonging to FEAT and having a son with autism I am also clinical assistant professor of psychiatry at the University of British Columbia and Director of Continuing Education (aka CPD) for the UBC Hospital Department of Psychiatry.

Science and Autism Treatment
The first point to make is that almost all clinical researchers and clinicians hold to the axiom that the more scientifically rigorous a study is, the less generalizable are its results. In other words, the fact that Lovaas' study is the most scientifically reliable report on the treatment of autism means that its findings are not likely to be reproduced in the "real world". Several papers published both prior and subsequent to Lovaas' landmark paper, employing both ABA and non-ABA techniques, describe a considerably lower rate of "normalization" than Lovaas. The normalization rate of most of these studies is remarkably close to 25% across the board. Aside from the published data, I know of no consultant who would claim a 50% "cure" rate. This is not necessarily "anecdotal evidence" but closer to "quantitative data". All in all, the outcome of the 19 kids in Lovaas' study is outbalanced by the outcomes of several hundred in other published reports and several thousand who have received "real world" therapy. This is not to say that ABA is not effective. A 25% normalization rate is still remarkable and is not surpassed by ANY other therapeutic intervention. However, my interpretation of the literature is that this 25% is the likely response rate within the autistic population and that this rate is independent of the therapy employed, provided the therapy is a valid technique and not some scam such as facilitated communication or swimming with dolphins.

Unfortunately, by the methods employed in the New York Report, Lovaas's report will always be seen as the "most valid." This is because it is almost impossible for any future study to employ an untreated control group. No ethics committee on this continent would approve it.

Those of you interested in alternative approaches to treating autism should get to know the work of Stanley Greenspan. Unfortunately his writing is excessively opaque and none of his books include an adequate description of the "floor-time" technique which he has developed.

Option Therapy
First, an admission: Ruth and I gave up on ABA almost two years ago, after two years of therapy with no change in Adam's autistic core behaviours in spite of his "successfully" completing the "beginner" curriculum. After trying 10 months of a variant of "floor time" we have now been doing Option Therapy with our son for one year. I concur with Sabrina that the Option program has not published adequate data to back up their claims of success (or justify their exorbitant fees). However, after doing the therapy I am comfortable in reassuring those on the mailing list that there is actually good rationale underlying the technique. Although not stated clearly in any of the Option manuals, the therapy is essentially a behaviour therapy, albeit one based on operant conditioning rather than classical conditioning. Those of you who remember your Psych 101 will recall that classical conditioning was devised by Pavlov. The similarities between Pavlovian conditioning and the Lovaas approach are fairly obvious. For those of you who need a refresher, operant coditioning involves leaving the subject in an environment where spontaneously occurring behaviour is rewarded. So, while in Lovaas the therapist will say "look at me" and toss the child a Smartie when he looks, in Option the therapist will just stay in the room with the child until he spontaneously looks at her. The spontaneous look is then rewarded (with a social reinforcer). Option also embraces the concept of "differential reinforcement" so that a brief look would be rewarded with a smile, a long look with a hug, and a long emotion filled gaze with a tickle. In writing this I am assuming the reader is familiar with ABA as a point of reference. If Claire (or anyone else) needs more detail about the technique employed in Option, the book A Miracle to Believe In provides all the information you would need and probably more than what you want, all delivered in Barry Kaufman's (thankfully) inimitable, onanistic prose sty.

Personal Thoughts
Having tried 3 forms of therapy I feel comfortable in saying that ABA is great if it works. However, the reality is that 50% or more of autistic kids receiving any therapy (including ABA) will remain severely impaired regardless of the quality of the treatment. After over a year and a half of "play therapy" (and that's really what Option and floor-time are) I now have a son who is happier, greets me at the door and wants me to come play with him (albeit on his own indiosyncratic stim-driven terms). I am no longer expecting to have a "normal child." However, at least Adam no longer recoils when I approach and occassionally seeks out my company. Further Option and floor time are less stressful and cheaper to do than ABA. (Admittedly, those first 3 or 4 months when you have to spend 10-12 hours a day in the therapy room are REALLY taxing.)

I hope some of you find this useful. I'll try to respond to e-mails as best I can.

Stephen Schertzer

[Deleted User]

Hello,
I too would like get a few words in regarding not only Option therapy but the general attitude towards "scientific proof" which keeps popping up on the discussion board. Since most of you do not know who I am and since what I will say contradicts some of what you may have already held as "true" I will preface this missive by mentioning some of my qualifications: In addition to belonging to FEAT and having a son with autism I am also clinical assistant professor of psychiatry at the University of British Columbia and Director of Continuing Education (aka CPD) for the UBC Hospital Department of Psychiatry.

Science and Autism Treatment
The first point to make is that almost all clinical researchers and clinicians hold to the axiom that the more scientifically rigorous a study is, the less generalizable are its results. In other words, the fact that Lovaas' study is the most scientifically reliable report on the treatment of autism means that its findings are not likely to be reproduced in the "real world". Several papers published both prior and subsequent to Lovaas' landmark paper, employing both ABA and non-ABA techniques, describe a considerably lower rate of "normalization" than Lovaas. The normalization rate of most of these studies is remarkably close to 25% across the board. Aside from the published data, I know of no consultant who would claim a 50% "cure" rate. This is not necessarily "anecdotal evidence" but closer to "quantitative data". All in all, the outcome of the 19 kids in Lovaas' study is outbalanced by the outcomes of several hundred in other published reports and several thousand who have received "real world" therapy. This is not to say that ABA is not effective. A 25% normalization rate is still remarkable and is not surpassed by ANY other therapeutic intervention. However, my interpretation of the literature is that this 25% is the likely response rate within the autistic population and that this rate is independent of the therapy employed, provided the therapy is a valid technique and not some scam such as facilitated communication or swimming with dolphins.

Unfortunately, by the methods employed in the New York Report, Lovaas's report will always be seen as the "most valid." This is because it is almost impossible for any future study to employ an untreated control group. No ethics committee on this continent would approve it.

Those of you interested in alternative approaches to treating autism should get to know the work of Stanley Greenspan. Unfortunately his writing is excessively opaque and none of his books include an adequate description of the "floor-time" technique which he has developed.

Option Therapy
First, an admission: Ruth and I gave up on ABA almost two years ago, after two years of therapy with no change in Adam's autistic core behaviours in spite of his "successfully" completing the "beginner" curriculum. After trying 10 months of a variant of "floor time" we have now been doing Option Therapy with our son for one year. I concur with Sabrina that the Option program has not published adequate data to back up their claims of success (or justify their exorbitant fees). However, after doing the therapy I am comfortable in reassuring those on the mailing list that there is actually good rationale underlying the technique. Although not stated clearly in any of the Option manuals, the therapy is essentially a behaviour therapy, albeit one based on operant conditioning rather than classical conditioning. Those of you who remember your Psych 101 will recall that classical conditioning was devised by Pavlov. The similarities between Pavlovian conditioning and the Lovaas approach are fairly obvious. For those of you who need a refresher, operant coditioning involves leaving the subject in an environment where spontaneously occurring behaviour is rewarded. So, while in Lovaas the therapist will say "look at me" and toss the child a Smartie when he looks, in Option the therapist will just stay in the room with the child until he spontaneously looks at her. The spontaneous look is then rewarded (with a social reinforcer). Option also embraces the concept of "differential reinforcement" so that a brief look would be rewarded with a smile, a long look with a hug, and a long emotion filled gaze with a tickle. In writing this I am assuming the reader is familiar with ABA as a point of reference. If Claire (or anyone else) needs more detail about the technique employed in Option, the book A Miracle to Believe In provides all the information you would need and probably more than what you want, all delivered in Barry Kaufman's (thankfully) inimitable, onanistic prose sty.

Personal Thoughts
Having tried 3 forms of therapy I feel comfortable in saying that ABA is great if it works. However, the reality is that 50% or more of autistic kids receiving any therapy (including ABA) will remain severely impaired regardless of the quality of the treatment. After over a year and a half of "play therapy" (and that's really what Option and floor-time are) I now have a son who is happier, greets me at the door and wants me to come play with him (albeit on his own indiosyncratic stim-driven terms). I am no longer expecting to have a "normal child." However, at least Adam no longer recoils when I approach and occassionally seeks out my company. Further Option and floor time are less stressful and cheaper to do than ABA. (Admittedly, those first 3 or 4 months when you have to spend 10-12 hours a day in the therapy room are REALLY taxing.)

I hope some of you find this useful. I'll try to respond to e-mails as best I can.

Stephen Schertzer

[Deleted User]

I am looking for contact information for Richard Foxx as well as any other qualified ABA treatment provider servicing BC who specializes in children aged 7 – 16. Treatment providers with experience with Aspergers or FragileX would be of great help also. I am posting this for several families pursuing treatment options. Thank You.

Alex Barclay
604 487 0048
Fax 604 487 0038
thujalog@home.com

[Deleted User]

I would like to respond about the inquiry regarding Son-Rise and the Autism Treatment Centre.

I too have seen the show you are referring to. When my daughter was first diagnosed, Son-Rise was one of the books I read. (I also read about Lovaas but at that point in time, felt the financial cost was out of our reach). As I desperately tried to find something affordable and effective, I stumbled across Son-Rise. The book spoke of an amazing recovery by the author's son through the dedication and hard work of his mother. Once their son was recovered, they started helping others to follow their path.

Within this book, there was an underlying message that the Lovaas method was cruel and too harsh. I began to wonder if the son-rise method wasn't better suited to my family. So I poured through every book, every chapter, every word, looking for some directions on how to get started, how to set up my child's program. NOt finding any directions, I turned to their website which was very slick and full of happy people but lacked detailed information on how to do this method. What I did find LOTS of was sales pitches on seminars that supposedly I needed. These seminars only took place at their treatment facility and cost considerable amounts of money.

I set out to discover does this son-rise method really work and how does it work? Yes, it too is very intensive, if you as a parent are able to spend your entire day with one-on-one with your child. The mother of the original child, was amazing in her dedicaiton and patience… I'll be honest, that's not me! Twelve hours a day in a small room with my child exhibiting behaviour isn't practical for me, especially since I have two children with autism. I wondered about training people myself based on a 3 day seminar, with no further guidance… a little worrisome.

In the end I was unable to find any scientific studies supporting this method. THere were some anecdotal stories but you can find anecdotal stories to support almost anything. With no science and with the costs being almost as high as doing a truly effective method that has lots of scientific research to back its claims, I decided that Son-Rise was not for me.

I wasted a lot of time pursuing this method. Once I realized it wasn't for me, I turned my energy to finding out more about Lovaas protocal ABA. What I found was that it wasn't harsh or cruel. Children weren't turned into little robots, they didn't spend all of their waking hours doing repetitive table work. ABA therapists play with children with autism, they teach skills, they practice conversation, they help them participate in the world the way all children should be able to.

Looking back, I know I wasted precious time. If I could do it all again, I would have concentrated my efforts on getting my children into an effective program from the start. Having experienced the benefits of ABA therapy, I have no doubts that what I am doing is right. Friends, family and associates regularly tell me of the huge changes they see in my children, more importantly, the data behind their progress proves the effectiveness of their programs.

I hope this helps in your quest for information.

Michelle Karren
Breanna and Griffen's mom

[Deleted User]

We are currently setting up an at home program and working on a learning room for 1 on 1. What types of toys, activities, etc., should we be thinking of putting in it. Also, we are trying to put together a team from our community to work with our son. Any suggestions on what we should be looking for and also some important interview questions.

Dave

[Deleted User]

We are trying to start up an ABA at home program with our 2 1/2 year old son Nathan. Some people have recommended WEAP in Vancouver, BC. I haven't had time to contact them personally. What can they do there for us? Also has anyone purchased the package called "HELP US LEARN" through the Austism Society of BC. If so, do you like it.

Lisa Luoma (Nathan's mom)

[Deleted User]

Has anyone heard of the Autism Treatment Center of America. I caught a television program that featured this centre, specifically the Son-Rise intensive program. I would appreciate any input from anybody who has knowledge of this particular program or organization.

Keith Encinas

[Deleted User]

Our sons ABA program is cruising along. Looking to buy new /(used?)cards for a categorization program, wide variety needed.
email thujalog@home.com or phone 604 487 0048
fax 604 487 0038

Alex and Suzanne Barclay

[Author]

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