[FEAT BC Admin]

In this topic area, discussion is on all issues relating to setting up and running a home-based intervention program. Please feel free to bring up any problems or suggestions. Parents can help each other greatly by sharing information and giving suggestions.

In addition to parents helping parents, A.B.A. professionals on in the Discussion Group can also help provide insight and guidance.

Topic

[Terry Suzuki]

Hi everyone,
If someone has experience on KTY funding
(Kindergarten transition funding)
please share your information.
I hear that It is for ages 4.5 -6years to help with the transition from pre-school to kindergarten for the families who have kids with autism in Vancouver
and there are two options (individual service or an organization service).
I woukd like to know which option is better.

Thank you,

[Deleted User]

I received more than few phonecalls, therefore is the list of the books I am constantly using:
ABA
„h Let Me Hear Your Voice ¡V Catherine Maurice
„h Behavioral Intervention for Young Children with Autism ¡V Catherine Maurice
„h Activity Schedules for Children with Autism ¡V Lynn E. McClannahan, Ph.D. & Patricia J. Krantz, Ph.D.
„h A Work in Progress ¡V Ron Leaf & John McEachin
„h Teaching Developmentally Disabled Children ( The ME Book ) ¡V O. Ivar Lovaas
ABA and natural environment type of learning
„h Teaching Language to Children with Autism or other Developmental Disabilities ¡V Mark L. Sundberg, Ph.D. & James W. Partington, Ph.D.
(All above ordered from Different Roads of Learning)
Hanen( ordered from Hanen institute)
„h More Than Words ¡V Fern Sussman
Option( ordered from Option Institute-see their www)
„h Son Rise The Miracle Continues ¡V Barry Neil Kaufman
„h A Miracle to Believe In ¡V Barry Neil Kaufman
Floor approach
„h The Child with special needs ¡V Stanley I. Greenspan, M.D. Serena Wieder, Ph.D.(library or any bookstore)
AUDIO TAPES
„h Special Children / Special Solutions ¡V Samahria Lyte Kaufman(Option)
CD-ROM
„h Autism Academy, Behavioral Programming for Children with Autism ¡V EDEN II(Different Roads of Learning)
VIDEO
„h Discrete Trial Teaching ¡V New York Families for Autistic Children Inc.
„h A Miracle of Love ¡V NBC( Option)
„h I Want My Little Boy Back ¡V BBC(Option)
„h Montessori program for preschoolers(West Van library)
I also follow the Japanese treatment of autistic children encouraging a lot of physical exercises every day: swimming, skating, gym, trampoline, running, hiking, dancing, plying a ball, massaging, push-pull games, spinning, swinging, and climbing, chasing, hide-seek, and many outings. Do I have any result? I¡¦ve heard today that she loves me the first time in her and my life. Yes ,this all listed above is accessible for the second language parents just like me. Krystyna(Elizabeth¡¦s mom)

[Deleted User]

And a last word from Stephen….
I agree with nearly all of Sabrina's posting, as well as with the comments from Stephen Sutherland and Michelle Bregrif. (Hope I got the name right.)

Let me reiterate that NO intervention has published data showing a superior "cure" rate or even an equivalent "improvement" rate to studies employing ABA. Comparing these studies is difficult for the usual methodological reasons, but ABA is CLEARLY the treatment for which the best evidence exists.

Neither Ruth nor I would advise a family looking to start treatment to ignore ABA and go directly to Option therapy. There were many factors contributing to our decision, which I do not feel like including on this discussion board. However, I should mention that although stimming behaviours are detrimental in the workforce they make little difference in the group home or institutional setting, which is where close to 50% (sorry, don't have article here to give the exact numbers, but it was authored by Lovaas himself) of the UCLA Autism Project subjects ended up.

I have other thoughts regarding the Smith study and its implications for ABA, as well as Greenspan, whose excellent work and published study of over 200 autistic children treated using floor-time cannot be dismissed. However, I would rather discuss these in another forum.

Stephen Schertzer

[Maureen St. Cyr]

Sabrina, bravo. You are astute and learned and always have something to write worth reading, no matter how long it is .

I would encourage everyone to read Sabrina's words a few times and reflect on them. We all try to do the best for our children, but sometimes in our angst and desperation and frustration, we may be doing exactly the wrong thing.

If I hear the doublespeak "best practices" spoken by our "friends" in government one more time, I will positively shriek. As always, "best practices" to some means "we're going to find some amoral twits with letters after their name to legitimize our gross violation of the rights of children.

We saw this in the Auton case, when the morally bankrupt NDP put their pet UBC "experts" up to defend their useless "treatments". Fortunately, Justice Allan saw through the scam and used — what was it? — six pages of her judgment to talk about how their testimony was obviously biased towards the government and not credible as a result.

Be aware we are seeing and will see it again and again. The same so-called service providers who preached against Lovaas and ABA for years have now suddenly changed their tunes and claim to be ABA experts as they belly up to the EIBI trough.

As we put more and more pressure on government to right the wrongs of the past and present, the BC autism industry are screwing themselves into the ground trying to protect the millions they have sucked out of the system for years, and of course the future millions they want to keep on sucking. Apparently the number of children they irrevocably harm in the process is irrelevant to them.

People, keep vigilant. Don't be fooled by the imposters. Your child deserves nothing but the best, so he or she can be the very best they can be. That means legitimate science-based treatment, not baby-sitting.

Avery
Ariel's Dad

[Sabrina Freeman]

Hello Everyone,

I’d like to respond to the post Stephen made regarding “Options”. Before I discuss Options in general, it’s important to discuss comments Stephen made regarding “Scientific Proof”.

SCIENCE

Science is theory driven … someone comes up with a theory about the way things interrelate. They suggest a causal relationship between variables such as, in this case, autism and the amelioration of autism through the use of certain principles which have been developed into a particular treatment. Then, bona fide scientists go about trying to test their theory by designing and running experiments. Each time an experiment provides data to support their theory (via support for the hypothesis derived from the theory), the validation is termed an “instantiation” of the theory. This is simply an instance where the theory is supported by a piece of evidence. The more instances support a theory, the more evidence we have the theory is sound. By way of example, the “law” of gravity is actually not a law at all but a theory. We commonly refer to it as a law because every time it’s tested, the theory is supported. So, if one drops a pencil, it falls to the floor and the theory of gravity is again supported. We are so confident in the theory of gravity, that it’s now called a law. In fact, however, we still have no PROOF that gravity exists, but we have a vast amount of evidence to support the theory.

In short, one does not “prove” theories are correct, one must provide adequate “evidence” to support the theory. The more evidence collected, the more confident we are the theory is correct. If we have an instance where the theory is not supported, then we have to explain why this occurred. In other words, the theory must be able to explain the “instance” in which it was not supported so we can still have confidence the theory is correct. Otherwise, the theory must be modified to accommodate the failed instantiation. This is the process by which a theory is refined.

SCIENCE, AUTISM AND LOVAAS

And now, back to autism.

It is generally recognized that Lovaas is a very good scientist. He designed an experiment to test a hypothesis regarding his treatment method for autism. Lovaas used a ‘between-subjects’ design, also utilizing ‘within-subject’ measures. This was, and remains, the best way to see if indeed a hypothesis is supported or must be rejected — it is a very well designed experimental approach. Lovaas’s hypothesis was supported by his first experiment and by subsequent experiments.

IMPORTANT … ‘47 percent recovery’: the hypothesis Lovaas tests is unrelated to percentage of children who became “indistinguishable” from their peers, as impressive as those numbers may be. The Lovaas hypothesis has to do with whether ‘Group A’ (the 40 hour a week group) benefited more than ‘Group B’ (the first control group) or ‘Group C’ (the second control group). Since that time, not only have there been other ‘between subject’ designs (experiments where two groups of children are matched) but there have been at least several hundred individual children who have gone through this treatment protocol with baseline data and follow-up –tantamount to a ‘within-subject’ experimental design, conducted across a large number of children.

Every time a child improves using the Lovaas protocol, this is another “instantiation” of the theory … Lovaas’s claim that his treatment protocol is effective in the treatment of autism. There are quite a few studies published showing the efficacy of the treatment. There are many, many more unpublished instances (with data to show improvement) where this treatment protocol has also been very effective. In fact, the improvement of children with autism in ABA programs is so common place, it’s unlikely a combined ‘single-subject’, ‘within-subjects’ Lovaas design would be accepted for publication at this point.

REPRODUCTION OF LAB RESULTS IN THE REAL WORLD

I’ve always been puzzled by the irony in this argument since it basically says Lovaas and colleagues did such a good job treating autism in the lab that it would be impossible to get exactly the same results in the ‘real world’. In other words, a good researcher’s work is actually criticized here for its rigor. This logic is unfortunate and clearly inappropriate. If one fixates on a specific percentage of recovery, this misses the point entirely. Remember, Lovaas’s theory is not about 47% rate of recovery; the theory centers on whether a treatment protocol significantly AMELIORATES a previously INTRACTABLE disorder. The 47% recovery rate was simply one instantiation of the theory.

An autism study was done by Sheinkopf and Siegal (1998) in which children were in treatment programs unaffiliated with UCLA or any of the Lovaas replication sites. These parents were using a workshop model with a variety of providers, some without appropriate oversight. In addition, most of the children in the study did not have more than approximately 20 hours. Even with this sloppy situation, children showed marked gains, although not anywhere close to Lovaas’ results or those of WEAP. What the Sheinkopf and Siegel study does show is that the Lovaas protocol is VERY robust, and it supports the argument that with appropriate oversight of the treatment program, treatment outcome can be much improved.

In short, the concept that Lovaas’ experiment was so rigorous that it can’t be done in the real world is an argument that really doesn’t hold up when one looks at the data, particularly when we now have a clinic in town!

THE FALLACIOUS CLAIM THAT 25% NORMALIZATION IS ‘COMMON’ IN AUTISM, REGARDLESS OF TYPE OF THERAPY EMPLOYED

My first reaction to this outrageous contention is, “please, show me the data!” In the available literature, the ‘normalization’ rate in absence of autism treatment is a mere 1 in 64. Even this low number may be overstated since rigorous data has not been collected.

We very much need to address the following question:

How can a purported 25% normalization rate occur under ‘other’ therapies if,

a) proponents do not take good baseline data and follow up data, and,

b) they don’t take data during the therapy?

We would all LOVE to see scientifically sound 25% normalization data across the field of autism treatments … but we’re still waiting.

THE NEW YORK REPORT VS. STANLEY GREENSPAN’S PURPORTED BEST-PRACTICES

The New York Department of Health autism report used the ‘gold standard’ of methodology to evaluate data on autism treatment efficacy. This gold standard is developed by the Agency for Health Care Policy and Research (AHCPR), part of the U.S. Federal Government. Greenspan’s ‘best practices’ journal does not use any scientifically rigorous, objective review protocol even resembling the AHCPR.

At this point, it is certainly unethical to put children with autism into a ‘control group’ for Lovaas treatment studies (a study group that does not receive the treatment vs. a group that does). This ethical consideration is why randomized assignment is no longer impossible. However, that said, there are still ways to do studies that look at comparative efficacy of treatments. For example, all children whose parents have chosen ‘Options’ could be matched with children whose parents have chosen ‘Lovaas.’ Baseline measures and periodic measures could be taken throughout the study and at the end of the day, we would have more knowledge on the relative efficacy of these two therapies. In fact, I heard Lovaas challenged Greenspan to just this type of study at a conference they both attended … second-hand knowledge, the stuff of urban legend :-)

OPTIONS THERAPY

After reading Stephen’s post, I have to say I have never heard ‘Options’ therapy described as a form of behaviourism. If this indeed is correct, then why do the Options people not take data to support the claim? Even a ‘within subjects’ design would be better than nothing. If the Options protocol is behavioural, then taking data should not pose a problem.

“No Data, But Believe in Us, We’re For Real”

Everyone should be leary of ‘experts’ who say “believe me, my autism treatment method works because I have letters after my name”. This is my feeling about those who supply unsubstantiated treatments.

I would never want FEAT BC members to believe Lovaas-ABA is the way to go simply because someone with credentials, like Lovaas for example, says so. In fact, the opposite is true. It would be disturbing if people were to make important decisions on their child’s future based simply on what “people” say. Members of this group are intelligent and can read the research data. The point here is that anecdotes can be harmful, even if they come from experts with letters after their name.

PERSONAL DECISIONS

I believe deeply that a parent must do what they believe is best for their child. However, that said, Stephen mentioned that his child did not benefit as much from an ABA program as compared to his current program. At face value, this would appear to be an instance where Lovaas’s hypothesis was not supported. A ‘good’ scientist would need to examine all the variables in this case to arrive at an explanation that accounts for the negative result. There may be many variables to account for this result. Since I do not know all the particulars about this specific treatment program, it would simply be conjecture on my part to suggest possible variables that were interfering with effective treatment. So, it’s important to stress comments here are of a general nature and do not apply specifically to Stephen’s child.

If a parent is looking at the child’s program data and finds no improvement, there are several variables that should be examined carefully. These include the following examples:

1) The quality of the ABA consultant
2) The quality of the treatment team
3) The amount of consultant supervision
4) The amount of parent ‘follow through’
5) Whether the “too-many-cooks-spoil-the-broth” phenomenon is at play
6) Medications interfering with learning
7) Number of times programs have been modified
8) Any critical learning stages “skipped” by the consultant or team?

We could go on and on with possible program flaws to explain the failure of treatment, or more accurately, failure in the implementation of the Lovaas treatment protocol.

There is new evidence to indicate that when implemented properly, the protocol is very powerful. The Smith et al. (1998) study demonstrates in compelling fashion that even the most challenged children improve significantly with the Lovaas protocol relative to control group. The gains are not as astounding as the 1987 Lovaas study; however, the Smith et al. children made considerable gains in view of the fact that not only were they autistic, but also severely Mentally Retarded. So, if even these severly challenged children can advance with the Lovaas protocol, it is indeed a very robust treatment method.

HAPPY CHILDREN WHO ARE ALLOWED TO SELF-STIM CONSTANTLY

My next comment has less to do with science and more to do with a world view which differs considerably from those parents who choose to permit unchallenged self-stimulatory behaviour in their children.

Self-stimulatory behaviour may seem to make a child “happy”, but it also serves to block out the world from the child. If no demands are placed upon a child — a license to ‘self-stim’ — that child’s life may become very small as an adult. The real world is ruthless when it comes to acceptance of differences and that child, as a self-stimulatory adult, will likely be condemned to a life of group homes with much free-time to ‘self-stim’.

A competing philosophy that espouses autistic disorder as being “Part of our world, not a world apart”, is in fact a belief system that says this society should accept strange, erratic people; this is a pipe dream – it’s not going to happen. Our society is sadly only good at giving high-level lip service to “caring” about, and “including” disabled children and adults. There are volumes of pretty words on paper, but parents come up against the ugly reality every day.

Truth is that without pushing our kids to learn control over self-stimulatory behaviour, they will most assuredly be marginalized in society and will likely have little opportunity to learn skills they need to hold down a job … they will probably never find meaningful employment and may be dependent upon others for a lifetime.

Greenspan may not place demands on the child, and may not care if the child engages in self-stim. That child may look happy (in the short term), but in the long run the child will likely not learn the necessary skills to succeed in and enjoy the larger world, with all the opportunities the real world offers.

Simply because a child may not be ‘normalized’ doesn’t mean that autistic child should be deprived of opportunities to be the best they can be. By allowing unbridled self-stimulatory behaviour, the child is sold short … big time!

Regards,

Sabrina
(Miki’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.

[Stephen Sutherland]

I'd like to add to Stephen Schertzer observations.

Lovaas did not compare 40 hours of ABA to 40 hours of another therapy. His study compared 40 hours of ABA to 10 hours of other therapies. The conclusion most people draw is that Lovaas's technique is effective. A different, but equally valid conclusion, is that 40 hours of good therapy time is effective. Subsequent studies certainly indicate 40 hours of ABA is better than 20 hours of ABA, which seems to support this argument. Until someone actually does a study comparing 40 hours of ABA to 40 hours of something else, we'll never really know what technique works better. So I don't disagree with Stephen Schertzer on the science.

Proving the validity of other techniques is in the realm of science. The real issue here is in the realm of politics and policy.

Governments have largely ignored their responsibility to children with autism. "Ignore" seems too weak a word, since governments have actively worked against those trying to help these children.

A valid technique to treat children with autism needs to be firmly established. Government has the funds and the power to do this. Government needs to be held accountable to its responsibility for helping children with autism.

FEAT of BC has had a laser sharp focus on getting services established. It distinguishes itself from other groups of indignent advocates by having volumes of research-based evidence back up their assertions.

By saying any treatment technique "may" be equally valid causes that focus to be lost. One of the main reasons autism has gone so long without research or funding is that parents and professionals in the autism community could never reach a concensus on a plan for action. Without a common vision, parents and professionals could never effectively lobby government to take action. Government has taken advantage of divisions in the autism community, and paying more attention to special interests in other areas who have found and articulated a common objective.

Acknowledging that any treatment "may" be equally valid also encourages government to spread limited autism funding among various treatment providers. This would certainly make non-ABA parents happy, as well as existing service providers threatened by ABA. This may sound fair, but there is a danger. For any treatment to be truly established, it requires a certain critical mass of funding. When you reach that funding level, you start getting other benefits, such as the development of university programs, professionals developing important sub-specialties, centers of excellence, and so on. These things firmly establish a therapy locally, and continuously improve the quality of technique. Giving government reason to divide up funding decreases the likelihood that that critical mass of funding will be attained.

The science is in ABA. Options, Floor-time, TEAACH, and other treatments may have their merits, but they don't yet have the science. Don't make the mistake of muddying the issue. Firmly establish one treatment first.

Stephen Sutherland
President, Manitoba FEAT
Father of Jacob

[Sabrina Freeman]

I’d like to respond to the ‘Options’ thread by first apologizing that I didn’t come on immediately and remind everyone that this is an ABA discussion board and not a board designed to debate all unsubstantiated, so-called autism treatments peddled by innumerable service providers.

That said, as subscribers to the ethos of ‘freedom of speech’, we will maintain the ‘Options’ thread for 72 hours.

By Thursday (11/07/01), the ‘Options’ thread will be closed and we will go back to discussing ABA and related topics. I urge anyone with a contribution to the ‘Options’ thread to please share thoughts with the group over the next three days. I will also visit this issue again in an upcoming post.

For those who would like to discuss non-ABA treatments after this thread is closed, please visit other venues such as the St. John’s list (to subscribe, please send an email to: listserv@MAELSTROM.STJOHNS.EDU)

Thank you.

Sabrina
(Miki’s mom)

[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

[Author]

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