SCHAFER AUTISM REPORT "Healing Autism:

No Finer a Cause on the Planet"

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Wednesday, November 20, 2002

MEDIA ALERT

More Autism on CNN 8pm pst.

Dr. Bernard Rimland writes in to say "I was interviewed today for the Connie Chung show on CNN regarding the vaccine issues. The show is on 8pm est and 8pm pst as well."

He said it "went well."

TREATMENT

* A Look at Sensory Integration: Promise, Possibility & the Art of Placebo

ADVOCACY

* Start Of Autism Program Is Fruit Of 10-Year Battle

AWARENESS

* Mother Shares Journey In Alternate Universe Of A Son With Autism

FUNDRAISING

* OAR to Donate Prizes to ASA North County

TREATMENT

A Look at Sensory Integration: Promise, Possibility, and the Art of Placebo A School Psychologist Investigates Sensory Integration Therapies

Anyone who works with children with autism, learning disabilities, or mental retardation has observed the child who craves being held tightly, the child with high pain tolerance, the child with tactile defensiveness, the child who is clumsy, and the child who cannot tolerate tags on the inside of her shirt. Sensory integration (SI) dysfunction appears to be a productive explanation for these problems (American Occupational Therapy Association, 1997; Case-Smith & Bryon, 1999). Moreover, SI therapy seems a logical approach to addressing these issues.

Background of Sensory Integration Therapy

Sensory integration is a normal developmental process involving the ability of the central nervous system (CNS) to organize sensory feedback from the body and the environment in order to make successful adaptive responses (Ermer & Dunn, 1998). The basic tenets of SI are:

1) the CNS is plastic;

2) SI matures along a predictable developmental sequence;

3) SI therapy attempts to revisit and restructure the development of sensory integration in cases where the normal developmental progression has been disrupted;

4) SI therapy links an adaptive response to sensory input; and

5) children have an inner drive to integrate information (Bundy, Lane, Fisher, & Murray, 2002). Among the therapeutic techniques are deep brushing; swings for vestibular input; textures; bounce pads; scooter boards; weighted vests and other clothing; ramps; and generally increasing or decreasing sensory diet, depending on the needs of the child. When Jean Ayres (1979) first developed SI she proposed that, by revisiting the developmental process of integrating information from the senses into an organized whole through a carefully controlled sensory diet, learning disabilities and other developmental disabilities could be cured (Carte, Morrison, Sublett, Uemura, & Setrakian, 1984; Kranowitz, Szlut, Balzer-Martin, Haber & Sava, 2001).

Evidence Belies Appeal of SI

There is one small problem. The problem is that it does not work. There is no evidence that SI therapy is or has ever been an effective treatment for children with learning disabilities, autism, or any other developmental disability. This is not one of those common cases where there is not enough information upon which to effectively evaluate the treatment. In fact, there are plenty of quality outcome studies (41 as of this writing). There is no study that uses a quality research design (e.g., random assignment of subjects, matched control groups, consideration of the effects of maturation, evaluators blind to treatment condition) that finds SI therapy to be effective in reducing any problem behaviors or increasing any desired behaviors. There is plenty of evidence from which a verdict can be drawn. And the verdict is that, despite the intuitive appeal and glowing testimonials, SI therapy is not an effective treatment (Gresham, Beebe-Frankenburger, & MacMillan, 1999; Hoehn & Baumeister, 1994; Shaw, Powers, Abelkop, & Mullis, 2002).

Literature in a field can be compiled and integrated through a method called meta-analysis. All results are reduced to a metric called an effect size. Effect sizes are expressed in standard deviation units. The rule of thumb is that an effect size greater than .50 is large and an effect size of .20 to .50 is moderate. Effect sizes of less than .20 are rarely significant. Another common pattern is that poorly designed studies result in greater effect sizes than well-designed studies. That is the case with SI therapy. Several early studies that did not assign participants randomly found positive outcomes. Forty-one studies had random assignment of subjects, which is considered a minimum criterion for a quality design. Subjects include children with the following diagnoses (N refers to the number of studies considered): autism (N=8), learning disabilities (N=23), mental retardation (N=5), motor problems (N=3) and multiple developmental issues (N=2).

From all of these studies, each with multiple variables, 218 effect sizes were calculated. Of note is that there were no significant effect sizes for language improvement (-.08), behavior (.02) and sensory motor functions (-.10). There were small, but significant effects for motor skills

(.24) and psychoeducational performance (.26). However, if only the studies that considered maturation factors are included (N=12), then the effect sizes for motor skills and psychoeducational performance are reduced to nearly zero (.03 and -.04, respectively; Shaw et al., 2002).

There simply is no evidence of the efficacy of SI therapy (Cummins, 1991). Many have tried. It certainly is possible that the studies lacked sufficient power to demonstrate effectiveness, dependent measures are not sufficiently sensitive to change, or that experimental designs may be biased against finding positive effects (Vargas & Camilli, 1999). These are important academic questions to be answered. However, for a procedure with no evidence of efficacy to be used on the public with claims of success, to charge money for these services, and to train practitioners in this model borders on unethical behavior. At least some evidence that SI procedures are “safe and effective,” to use Food and Drug Administration language, is required before moving a technique from theory and experimentation to the public.

The Placebo Effect of SI

If this is so, then why do so many therapists and parents swear by the effectiveness of SI therapy? In a word: placebo. Placebo is a powerful tool used in many professions. If someone believes that a therapy works and invests personal energy into making a therapy work, then to some degree it will work. In SI therapy a skilled professional is spending one-on-one time with a child, coaching parents on how to interact with their child, supplying answers to parents, and giving parents hope (Ottenbacher, 1982). These are fabulous and valuable activities. Parents are empowered. Parents become hopeful and involved. However, these activities have nothing to do with SI therapy. A professional could provide the same positive messages by giving the child a massage or playing checkers with a child and there would be the perception of positive outcomes. Placebo is neither a bad thing nor something to be ignored. There is an estimate that 30% of physician treatment effectiveness is due to placebo (Roberts, Lauriello, Geppert, & Keith, 2001). Certainly the same is probably true of psychological counseling (Roberts, et al., 2001). I rarely dismiss SI as a treatment option because there is likely to be some good derived from the family working with these skilled professionals. I will only argue against SI when the diagnosis of SI dysfunction and subsequent treatments interfere with a more appropriate diagnosis with a potential to result in an effective treatment plan. Perhaps this is a wrong approach. If parents, Medicaid, or insurance companies are paying 60 to 80 dollars per hour of therapy, then they should be ensured that the child is receiving an effective treatment rather than a placebo.

An interesting phenomena is noted on the popular website Amazon.com. A popular part of this website is that people who have read books submit short reviews. These reviews are posted along with other information about the book. Customers then write in to say how helpful is a given review. Reviews of the popular book, The Out-of-Sync Child (Kranowitz & Silver, 1998), that were positive, glowing, and unquestioning were usually considered to be helpful (19 of 20 comments). The one review that questioned the book’s major premises was universally reported to not be helpful at all (0 of 4 comments). People want firm and intuitively appealing answers, identification of causes of the problems, and guaranteed cures. The general public values certainty. Scientific support is irrelevant. The probabilistic approach of science is not as satisfying to desperate parents as unquestioned conviction, certainty of conclusions and declarations of “fact."

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Close to Psuedoscience?

To a scientist-practitioner there are several extremely disturbing aspects of SI. There are several aspects of SI that are dangerously close to the criteria used to define pseudoscience (Gardner, 1982). Among these criteria are: a) Reliance on subjective validation (i.e., failing to consider maturity, errors in initial diagnoses and the effects other valid treatment regimens in cases where children improve); b) nearly exclusive reliance on anecdotes, rumor, common sense and eyewitness testimony to support a treatment validity; c) an indifference to facts (i.e., despite advances in developmental cognitive neuroscience and a large body of research on SI, there have been no major changes in theory of SI since Jean Ayres’s 1979 book, Sensory Integration and the Child); d) beginning with a spectacular and emotionally appealing hypothesis and only acknowledging supporting items while ignoring all contrary evidence; e) deliberately creating mysteries and mysterious new constructs (i.e., SI theorists invented the concept of “near senses” and refers to mysterious plasticity of the CNS without explanation of how SI uses neural plasticity toward a restructuring of brain structure); f) the literature is aimed at the general public rather than the academic or clinical community; and g) convinces people by appeals to hope and faith in cases where the scientific and clinical community has no scientifically accepted answers. Moreover, the original SI therapy was developed for use for children with learning disabilities. This application of SI therapy is nearly universally discredited (see DiMatties and Quirk [1991] for an exception). Now SI therapy is being applied to children with autism, developmental dyspraxia, mental retardation, nonverbal learning disabilities and children with general motor clumsiness and environmental sensitivities. SI proponents may eventually find or create a disorder that SI therapies effectively treat. At this point, the search continues.

Ties to Psychomotor Patterning

While Awaiting Research Evidence….

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ADVOCACY

Start Of Autism Program Is Fruit Of 10-Year Battle

Mom's perseverance pays off with Busy Bee

Ten years ago, an exasperated Peggy Baber called Bayonne Hospital to ask what could be done to help her 2-year-old autistic son Stephen, who "wasn't speaking." Baber says she was told there were no programs available.

Undaunted, Baber persuaded the city school district to take a chance on educating her son, and she said from that point on, good things began to happen.

"Steven began to use sign language, words," she said. "He began to sit in a chair, not throw it across the room. He started to give you eye contact.

"Most important, he started to laugh and enjoy life."

On Wednesday, Baber was joined by a host of city, school and hospital officials in a celebration at Bayonne Medical Center that marked the opening of the Busy Bee Program, billed as "the first privately funded program in New Jersey to reach out to newly diagnosed (autistic) children between 18 months and (age) 3."

The program, a collaborative effort by the Bayonne Medical Center, Bayonne Board of Education and the Simpson Baber Foundation for the Autistic, will eventually provide 20 hours a week of sensory integration training for up to six youngsters at a cost projected by Baber at more than $300,000 for the first year.

Autism is a complex neurological disorder that affects the functioning of the brain, particularly in the areas of social interaction and communication. Today, the U.S. Center for Disease Control and Prevention estimates that as many as 1.5 million Americans share some form of the disability. Several federal agencies believe that number could reach 4 million by the decade's end.

The Busy Bee Program will operate out of the Bayonne Medical Center's pediatrics unit, as an extension of the city school board's special education wing, under Baber's supervision.

Maryann Cassidy, of Union Beach, who previously taught autistic children at the Morris/Union Joint Commission's Developmental Learning Center, has been hired as the Busy Bee Program's full-time special education instructor. Youngsters will also work with an occupational therapist as part of the 20-hour-a-week program.

Baber said the program will ultimately hire five teacher aides to work with Cassidy and up to six youngsters. There is currently one child, a 2-year-old boy, enrolled in the program, she said.

"This is the culmination of the efforts of many civic-minded people and of philanthropists," Baber said. "It means that with early intervention, there's hope for the future. I know this will succeed. I know this is going to work."

Bayonne Medical Center Board Chairman Herman Brockman called the program "a service sorely needed in Bayonne." Schools Superintendent Patricia McGeehan agreed.

McGeehan said there are now 30 children in the district attending "self-contained classes" for the autistic at the Wilson and Washington elementary schools, and "numerous" others with lesser degrees of the disability are in regular classes.

"Autism is reaching epidemic levels nationwide," McGeehan said, "so if we don't open this window now, by reaching kids at an early age, it will never open again."

BMC President and CEO Robert H. Evans said that while "there is no definite cure" for autism, "we do know that early intervention works."

He cited his own son Brian as an example. After his son was diagnosed at the age of 20 months, Evans said he and his wife Michele found one program in New Jersey that would accept Brian.

Evans said that Brian is 9 now, is in a regular third-grade classroom and has "scored off the charts in standardized tests, he has friends, and a lot of the sensitivities he once had, he no longer has."

"It's wonderful to give hope back to parents," Evans said.

Among the many donors to Busy Bee, Baber credited Pamrapo Bank, Fleet Bank and Tony and Fina Barberi for their contributions. Anyone interested in making tax-deductible donations to the program may call (201) 858-9933 for information, Baber said.

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AWARENESS

Mother Shares Journey In Alternate Universe Of A Son With Autism Book Review

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Kelly Harland's 12-year-old son Will has autism. That not-so-simple fact informs every move, affects every molecule of this Seattle woman's life.

Likewise, a reader looking in on the world Harland tours is transformed by learning of Will's life, which doesn't mesh neatly with the larger society's notion of "normal."

There's a miraculous alchemy to these stories of one small boy: They have the power to change the way a reader sees her own place in society, recast her own definition of "normal."

It's a given that much of this book will resonate with those familiar with autism, a developmental disorder that takes myriad forms: difficulty communicating; a constant need to repeat certain rituals and patterns; difficulty understanding or acting on social conventions that others perform as a matter of course. As Harland writes in her introduction, autism (or Autism Spectrum Disorder as some now call it) is protean in its nature. "There are children with severe challenges," writes Harland, "and there are high-functioning junior NASA scientists" who have autism.

The book is not a treatise on this disorder that "no one can seem to get a handle on," as the author characterizes it. Rather it is a collection of essays about Harland's experiences "navigating Will's universe, about mapping the world he has pulled me into" where even tiny changes or benign unexpected noises are anathema.

Reading the signs

In the most compelling of the many small stories, Harland recalls dealing with one of Will's particularly troubling phobias.

Every six weeks or so, her then-toddler would erupt in fearful sobbing as they drove a certain route through their neighborhood. One day the light

dawned: Will was reacting to a large billboard on a nearby corner. Somehow, Harland marvels, he was able to track time closely enough to know that six weeks had passed and the billboard's advertising image was about to change. The prospect of seeing something unfamiliar unnerved him completely.

In the middle of one hysterical meltdown, a desperate Harland called the billboard company and sought help from the young woman who answered the telephone.

"I know this is going to sound really crazy," she began, explaining that her young son had "some special challenges" and the sight of a new billboard frightened him. As she babbled her explanation, which even to her own ears made her sound like a "bona fide nutcase," Harland realized the woman was actually listening. More amazing, she helped.

For the next few months, the "sign goddess" cheerfully took Harland's calls and briefed her on upcoming billboards. Will, carefully clued in about the impending changes, was able to prepare himself for a dreaded alteration in his personal landscape.

"She had interpreted my craziness for what it was — a cry for help," Harland wrote. "For a moment once a month, her desk job became part of the helping profession. 'Oh it's you, Kelly, I knew it!' she would say when I called. 'How's Will doing?' He was doing so well that eventually, after eight or nine months, I didn't have to call anymore."

This story, like the entire book, is powerful because it works on many levels. It tells of the endless demands of parenthood; the contortions one goes through to get any child safely through his day.

It reveals something of the terrors that lurk for a person — autistic is one label they may wear — who is hard-wired to require predictability, for whom spontaneity is a threat.

And it makes the point, beautifully, that you might be called upon to help someone at the most unexpected time. That stranger on the path or the faceless person on the other end of the phone may need something only you can provide. Countless great thinkers (not a few of them associated with religious movements) have ventured this point with less success than Harland.

A rich view

Is Will's fear of changed landscape and unexpected noise a malady? Or an exquisitely calibrated sense of how things really should be in a safe and perfect world? Read Will's story, then ponder your own fears, routines and rituals. Whose list is "normal?" A century from now will society look back in amazement at our perception of those with autism as disabled, disordered or even "challenged?"

Whatever else is true, it is absolutely so that raising a child with autism is very hard work, and Harland does not sugarcoat that reality. But to live it, and to read about it, is indeed to enter a miraculous alternate universe.

"A Will of His Own," like the wonderful 1960s "Karen" best sellers by Marie Killilea, whose daughter had cerebral palsy, has the potential to educate people about a condition not widely understood. And Harland's book, her first, is well-written. As a singer and songwriter, she brings a fine pacing, a kind of musicality, to her writing.

But its richness is not strictly in its ability to raise awareness about autism or in its well-done narrative.

This is a book that guides the reader to a place where she can look at her same old world from a vantage point she's not visited before. Great books do this.

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FUNDRAISING

OAR to Donate Prizes to ASA North County

[From an OAR announcement.]

Two weeks ago the Organization for Autism Research (OAR) canceled its plans for a scheduled golf outing this month.

"We received a terrific response from the local business community in the form of prize donations and sponsorships," said Escondido's Joy Ciolino, West Coast Coordinator for OAR, "but didn't have quite enough players to have a competitive tournament or a successful benefit event."

With no immediate plans to reschedule the tournament, Mike Maloney, OAR's Executive Director, gave Ciolino the green light to donate the array of prizes the OAR golf committee had collected to one or more worthy autism organizations in the San Diego area. After clearing this with each of the original donors, Ciolino recommended that OAR contribute its prizes to the Autism Society, North County Chapter, for a golf tournament to be held in January. Maloney immediately said, "Yes."

"It was frustrating to cancel our event after working so hard to pull it together," Ciolino said. "But being able to offer our prizes to ASA, North County, offers great consolation and ultimately serves the same purpose-helping better serve persons with autism and their families."

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