SCHAFER AUTISM REPORT "Healing Autism:

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Thursday, February 06, 2003

CARE

* Vulnerable Work Force Needs Help -- From Sea. . .

* . .To Shining Sea. . . Budget Cuts & Layoffs Bring Fear of Isolation

* The ABC's of Special Needs Planning. . .Made Easy? Part III

Failing to Take Action!

EDUCATION

* A Parent and Educator's Guide to Section 504 of the Rehabilitation

Act of 1973

TREATMENT

* L-Carnosine and Autism Improving Language and Behavior in ASD Children

* In Defense Of Occupational Therapy's Sensory Integration

READERS' POSTS

Vulnerable Work Force Needs Help -- From Sea. . .

Shame on us for not being appalled and outraged by the proposed $100 million state budget cut in services for the developmentally disabled in our communities.

Shame on us for not standing up and fighting for the men and women who can't stand up and fight for themselves.

It wasn't that long ago that we labeled them "retarded" and institutionalized them because that was easier and cheaper than trying to assimilate them into the community.

Why bother, the thinking went, for with their limited mental abilities what could these people possibly do that was productive? How could they survive? Well, they can do a lot. And, they're surviving very well, thanks to some great nonprofit community organizations like Tierra Del Sol, Work Training Programs, New Horizons, and Ability First that give developmentally disabled young adults a chance to lead full, productive lives.

Every morning, 20 feet from the desk where I write these columns, I watch 34-year-old Marcella Cowley sort the mail. I watch her, Renee Steiner, Linda Anderson and Ray Tzeng -- all four with developmental disabilities -- sit in the lunchroom on their break. They read magazines, listen to music on headphones and talk, just like any other employee.

Thirty years ago, they would have been sitting in the recreation room at Camarillo State Hospital.

To get to this part-time job, Marcella and her friends get up at 5 a.m. A van picks them at 6 a.m. from the group homes where they live, then takes them to Valley Village School at Sherman Way and DeSoto Avenue to meet Marisela Hernandez, their job trainer from Tierra Del Sol.

Together, they catch an MTA bus and arrive at the Daily News for jobs and lives they would never have had but for this service. Back in the Dark Ages we would have warehoused people with disabilities, because that seemed easier and cheaper.

But now we see them everywhere -- washing cars at Hamer Toyota in Mission Hills and at the auto gallery in Woodland Hills, stocking shelves at the Northridge Sportmart, handing out towels at the North Valley YMCA and watering plants and sweeping up at Home Depot in Canoga Park.

There are plenty of young adults out there leading productive lives. But their opportunity to continue is being threatened by the proposed budget cuts.

"It's unconscionable and appalling," says Cindy Burton, executive director of Work Training Programs Inc., in Burbank, which has placed hundreds of developmentally disabled workers in jobs in the San Fernando Valley.

"They're California's most vulnerable population, and here the state is trying to balance the budget on the backs of the people who can least afford to give anymore," she said.

"They're underserved and under-resourced now, yet the state still wants to take away more of the vital services they are receiving. Is California prepared to see people with mental retardation out on the street? I don't think so."

Steve Miller, executive director of Tierra Del Sol in Sunland, concurs.

"This is not just another cut on the backs of previous cuts; this is the state turning its back on us," he said. "There's only so much private fund-raising we can do to keep helping our clients."

Of the $7 million Tierra spends every year to provide work and educational opportunities for 500 adult clients, 95 percent of the money comes from the state.

Without that money, doors will be closed and services for the developmentally disabled severely curtailed, the experts in the field warn.

"We're looking at the day when people again will be living in large institutional settings because it's cheaper," Miller said.

A setting like the old Camarillo State Hospital, where Sharon Cambern was sent when she was 9 and diagnosed with autism and severe mental retardation.

Today, at 49, she's leading a rich life full of enjoyment thanks to Tierra Del Sol, says her mother, Pat Cambern.

"She came to Tierra in 1973 to a program designed to meet the needs of the client, instead of just being pigeonholed like she was at Camarillo," Pat said.

"There are so many wonderful success stories out there," she said. "People who have made contributions to the community and seen the blossoming of their personalities.

"Success stories you would have never seen in an institution."

And now a cash-strapped state is looking to take a giant step backward -- onto its most vulnerable population -- and no one outside the mental health community seems to care.

Shame on us.

If you want more information on the effects of the proposed state cutback in funding for services for people with disabilities, a grass-roots organization called Coalition of Californians with Developmental Disabilities has been formed.

Write them at Tierra Del Sol, 9919 Sunland Blvd., Sunland, CA 91040, care of Steve Miller. Or call them at (818) 540-5280.

And it wouldn't hurt to lean on your local assemblyman and state senator, either.

--- Dennis McCarthy's column appears Tuesday, Thursday, Friday and Sunday.

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. . .To Shining Sea. . . Budget Cuts and Layoffs Bring Fear of Isolation

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For Robert Taylor, 38, there will be no more Thursday night swims or Saturday hikes with friends, and probably a lot more time sitting in his room, alone with thoughts that even his parents cannot always fathom.

For Jason Sargent, 24, and his brother Scott, 23, the days of confidence-building dance parties and dreams of winning medals at the state Special Olympics are also gone, lost to state budget cuts and layoffs that many of Connecticut's most vulnerable residents regard as more cruel than necessary.

And for Dick Santo, 58, a single father of two mentally retarded sons who relied on state-employed therapists for his sons' only glimpses of the outside world, there is no longer any doubt about sending Richard Jr. and Ted to live in a group home.

With the therapists out of work and his other state aid for his sons dwindling, said Mr. Santo, an auditor for the state revenue agency, "the one link we had to the community is now broken."

For a decade, hard times and Connecticut seemed as mutually exclusive as yacht parties and welfare checks. Since December, however, Gov. John G. Rowland has used layoffs and program cuts as a way to keep the state's declining fiscal health from worsening, after years of enormous budget surpluses turned into a looming $2 billion deficit.

As Democratic lawmakers argue over their plans to increase taxes and state labor unions refuse to give in to his demands for wage concessions, Mr. Rowland, a fiscally conservative Republican, has shown little hesitation in trimming jobs at dozens of agencies, including those that help care for people with disabilities.

The cuts have been deep enough to shut down entire branches of state departments affecting, in part, how thousands of residents care for disabled family members.

"I would never be able to find someone who could take care of them," Patty Sargent, Jason and Scott's mother, said Thursday at the family's home in Willimantic, in northeastern Connecticut. Mrs. Sargent and her husband, Stanley, both mail carriers, said their sons require constant help, from shaving in the morning to getting to sleep at night.

For the past decade, state rehabilitation therapists took the Sargent brothers out for small group activities several times a week, building their confidence and teaching them to be more independent, Mrs. Sargent said. "It allowed Jason and Scott to say, `I went to a dance with my friends,' " she said. "It was something to do on their own, away from us."

Because of cuts in state transportation aides, the Sargents said, Jason and Scott will probably miss out on this year's state Special Olympics, a highlight of their spring for the past several years.

As she spoke, Scott, in a red Mickey Mouse sweatshirt, bashfully stared at a visitor; Jason sat silent on the couch, hands cupping his knees. Both men are mentally retarded and unable to communicate verbally, so the family relies on a system of hand signals.

For Mr. Taylor — tall, handsome and autistic — the state Department of Mental Retardation's recreation program turned an introverted personality, who once asked his parents to buy him a mannequin for Christmas so he could have a friend, into a social one, with buddies who would call him up just to chat, said his sister, Kathy Taylor.

"He tends to engage in conversation much more now," Ms. Taylor said Thursday. "My mother told me, `We never thought we'd see the day when we would have to leave the light on for him.' "

After confronting him with news that the therapist would no longer be visiting, Ms. Taylor said her brother could not understand how budget problems could mean no more time with his pals. "To him, these are his friends," she said.

Experts said ending mental-health services like these can be traumatizing for people with disabilities, especially if they have no social outlet other than parents and siblings.

"That person is going to be penalized," said Mary Beth Bruder, director of the University of Connecticut's A. J. Pappanikou Center for Excellence in Developmental Disabilities. "Any skill development that may happen as a result of, say, recreation, isn't going to happen."

"Any time social services are cut in the area of family support," Dr. Bruder added, "you're going to increase the burden on that family."

The Rowland administration is planning to cut about 3,800 jobs by early spring. Chris Cooper, Mr. Rowland's press secretary, said today that the cuts have been planned to keep core services intact and that several mental retardation therapists and social workers from the Department of Social Services were still on duty.

"We attempted to do this across the board in the fairest way possible," he said.

People with disabilities and their familes are not the only victims of the layoffs, of course. By the middle of February, 269 of the Department of Mental Retardation's 5,500 or so employees — therapists, secretaries, maintenance workers included — will have been laid off, an agency spokesman said.

"Twenty years of my dedicated service to these people, and they just take it away," said Roger Ings, 47, a father of four young children, who lost his $55,000-a-year job as a rehabilitation therapist. In an interview today, he betrayed both sadness for his clients whom he can no longer counsel, including Jason and Scott Sargent, and a determination to make ends meet, somehow.

"It's like having a death in the family almost," he said about not seeing his patients. "We enrich their lives by doing things that they would never get a chance to do," he said.

Mr. Ings said: "I just feel so violated and unappreciated by the state. Why?"

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CARE

The ABC's of Special Needs Planning. . .Made Easy? Part III Failing to Take Action!

["The ABC's of Special Needs Planning. . .Made Easy" is the name of a book by Bart Stevens that promotes itself as a "step-by-step comprehensive guide" that "helps families and professionals plan for the furture care, supervision, security and quality of life for a person with special needs."

This is the third and final installment in a series written by the author, Bart Stevens, and is provided for our readers' information only. If you are aware of similar planning services, please let us know: edit@doitnow.com –LS]

For the past two days I have talked about why planning for the future of your loved one with a disability is so crucial, and the consequences of what happens when you don’t plan. The following poignant case studies illustrate my point. These are true stories of circumstances that could have been prevented by taking some simple planning steps. Don’t let yourself and your loved one become another story of the consequences of not planning.

Divorce

Marc and Amy divorced about 18-months after Kenny was born. The divorce was not pleasant, but it was not a war either. Marc agreed to Amy having custody of their two children. Kenny, who has Cornelia de Lange Syndrome, is the youngest.

Marc paid alimony and child support regularly for the first few months. His bi-monthly visit to the children became less and less frequent. Support checks arrived late, and sometimes not at all. Marc remarried about two-years later and moved to another state. The support checks stopped altogether as did the visits and holiday cards. Amy was “on her own.”

Amy’s family helped. Even Marc’s parent’s provided some financial assistance. Amy inherited $300,000 from her grandfather. This was a tremendous help, as it allowed her to work fewer hours at her job and spend more time with Kenny.

Kenny was 12-years-old when Amy was diagnosed with breast cancer. Surgery and months of chemotherapy and radiation were unsuccessful. Believing she would not die, Amy did not make any provisions for her estate or children.

After Amy’s death, Marc, being the biological father, was given custody of the children even with his history of defaulting on child support, and not having seen the children in years. He also received control of Amy’s estate. Could this have been his motivation to get custody of the children? Control of their inheritance? Is Marc truly the best person suited to care for these children? Do you think this is what Amy wanted?

What could Amy have done to avoid this situation? There was no guarantee that Marc could be kept from getting custody of the children. Amy would have been wise to keep a journal of missed support checks, the infrequent calls and visits, and how Marc voluntarily estranged himself from the children. At least other family members would have had a strong case to contest Marc’s appointment as guardian and trustee. However, Amy could have guaranteed that Marc would have no access to, or control of the money she left her children. A Special Needs Trust for Kenny and a traditional Trust for her other child, would have a Successor Trustee appointed by Amy, to manage and control the funds for the benefit of the children and out of the hands of Marc. The Successor Trustee also has sole discretion in disbursements from the Special Needs Trust. Amy might have been able to convince Marc to rescind his parental rights leaving her able to appoint a Successor Guardian of her own choice. Regardless, she should have discussed this with him. She could have stated what she wanted for Kenny and made the necessary arrangements while she was still able.

If Marc violated his duties as Trustees and misused the assets in the trusts he would have been liable for criminal charges. However, the likelihood of the money being replaced is zero to none. A big problem was ignored. The opportunity to resolve it easily was gone. This is a common occurrence.

Bubba, Bubba, Bubba

Michael is 42-years-old and lives with his mother, Anne. Michael has multiple disabilities. His communication and functioning skills are at the level of a two-year-old. He uses a wheelchair and requires assistance for all of his needs. Anne has cared for him his entire life.

Michael is able to speak a few words. One of the things he does is roll his head from side-to-side, smile and say, “Bubba, Bubba, Bubba.” I asked Anne what Michael meant. “What do you think it means?” she responded. I told her I had no idea. Anne said, “Bubba, Bubba, Bubba means “bubbles!” So I assumed Michael wanted Anne to blow bubbles for him. Anne further explained, “It’s bubbles in a soft drink. He likes the tickle in his throat when he drinks it.”

It is a cute story, however, it made me think. Anne had done no planning. There was no written information or instructions for Michael’s care needs. Imagine if Michael came to live with you and you have to figure everything your yourself. You watch him roll his head and hear Michael say, “Bubba, Bubba, Bubba” a few times each day. What would you think he meant? After a few days he says it again, this time without a smile and fewer times each day. By the end of two weeks he never says it again.

Michael’s limited communication skills allowed him to express a desire for one of the few things that made him happy and gave him pleasure. Who knows what self-esteem he felt because he was able to make a request and have it understood and fulfilled. What a tragedy it would be if Anne died and never let anyone know about, “Bubba, Bubba, Bubba.” Think about how well and secure Michael would feel, if after losing his Mother, being moved from his home, and changing his life completely, he says to his new care providers, “Bubba, Bubba, Bubba,” and they know to give him that favorite soft drink. How do you think it would make Anne feel if she could see Michael’s smile?

It is a touching story, however, it made me think, “What happens if like in Anne’s case, you had done no planning?” As in Michael’s situation, there was no written information or instructions for your loved one. Imagine if Michael came to live with you, and you had to figure everything out yourself. You watch him roll his head and hear him say, “Bubba, Bubba, Bubba” a few times each day. What would you think he meant? After a few days he says it again, this time without a smile and fewer times each day. By the end of two weeks, he never says it again. I addressed earlier the reality of mortality and the fact that your child may very well survive you. You will not be gone for “just a few hours.” You are gone permanently.

My intention these past three days has been to help you appreciate and understand how dire the consequences will be for your loved one with special needs if you have not done any future planning for them.

These two stories make abundantly clear that the person you are hurting by not doing special needs planning, is your love one with special needs. Who better than you to know and understand their wants and needs? They are relying on you to take care of them, because they cannot take partial or full care of themselves.

Since 1993, those attending my seminars or hearing my presentation at a conference, would ask afterwards where they could get the most up-to-date information I presented? Until recently, the answer was “no where.” That’s why I finally wrote, “The ABC’s of Special Needs Planning Made Easy©, released in November 2002. The book removes the obstacles in planning, answers your questions, and guides you through the planning process in a simple, step-by-step method. It takes an overwhelming process and breaks it down into simple steps that you can easily understand. After reading my book, you will be prepared to begin the actual planning process, by utilizing “The Special Needs Planning Kit©, a do-it-yourself planning kit that I developed to enable you to achieve your planning goals easily and affordably.

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EDUCATION

A Parent and Educators Guide to Section 504 of the Rehabilitation Act of 1973 Equal Rights for all Students

A Parent Guide to Section 504 is a pamphlet which provides information and describes the requirements of Section 504 of the Rehabilitation Act of 1973 with respect to preschool, elementary and secondary school policies involving placement of children with physical and mental disabilities.

This pamphlet is designed specifically to give parent's understanding by providing information to help them access services for eligible Section 504 students.

Many states have developed Section 504 Guidelines for Educators that explains how a student might be eligible for Section 504 services. A copy of these guidelines are available by calling the State Department of Education.

What is Section 504?

Section 504 is the part of the Rehabilitation Act of 1973 which applies to persons with disabilities. Section 504 is a civil rights act which protects the civil and constitutional rights of persons with disabilities.

Mandate

Section 504 states that no person with a disability can be excluded from or denied benefits of any program receiving federal financial assistance.

Section 504 and special education are two separate services. All school districts should have a Coordinator to answer your questions about Section 504. A Parent and Educators Guide to Section 504 of the Rehabilitation Act of 1973 Equal Rights for all Students

Historical Background

Section 504 of the Rehabilitation Act of 1973 was implemented by Congress in 1977. For many years school districts perceived its main obligation as ensuring physical access to public buildings (i.e., ramps were installed, curbs were cut, elevators were added to multi-level buildings, rest room stalls were enlarged, etc.). Schools were at the same time committed to compliance with special education regulations now referred to as the Individuals with Disabilities Education Act-Amendments of 1997 or IDEA.

With passage of the Rehabilitation Act of 1973, Congress required that school districts make their programs and activities accessible and usable to all individuals with disabilities.

Within the last several years, the Office for Civil Rights (OCR) has become active in assisting school districts in further defining "access." The definition of access means more than physical access, a student may require special accommodations such as modified assignment in order to benefit from their education.

How Does Section 504 Define "Appropriate Education"?

A free appropriate education is one provided by the public elementary or secondary school which includes general or special education and related aids and services that (1) are designed to meet the individual educational needs of persons with a disability as adequately as the needs of the non-disabled persons are met, and (2) are based upon adherence to evaluation, placement and procedural safeguard requirements.

How does section 504 define "disability"?

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TREATMENT

L-Carnosine and Autism Improving Language and Behavior in ASD Children

L-Carnosine is a naturally occurring amino acid found in high concentrations in muscle, heart and brain tissues. L-Carnosine—not to be confused with the popular supplement, L-carnitine—is a highly effective anti-aging nutrient that possesses powerful antioxidant, free radical scavenging and neurotransmitter properties. Carnosine inhibits the formation of carbonyl groups, thereby reducing the formation of abnormal proteins. L-Carnosine extends maximum cell division capacity, protects against DNA oxidation, blocks glycosylation and reduces Advanced Glycation Endproducts (AGEs), as well as acting as a cell membrane stabilizer and an intracellular buffer.

L-Carnosine is already a well-established anti-aging nutrient that is used to treat liver disease, cataracts, Alzheimer's disease, and cancer. L-Carnosine has recently been shown to possess a tremendous potential for improving language and behavior in children diagnosed with Autistic Spectrum Disorders (ASD).

New Research

Researchers treated 31 autistic children, ranging from 3 to 12 years in age, with either 400 mg of L-Carnosine, twice a day, or a placebo, for 8 weeks. At the end of the study the children treated with L-Carnosine showed significant improvements in behavior, socialization, and communication, as well as increases in language comprehension based on CARS (Childhood Autism Rating Scale), vocabulary tests (E/ROWPVT) and biweekly parent reports. In the conclusion to their report the researchers state, "Oral supplementation with L-Carnosine resulted in demonstrable improvements in autistic behaviors, as well as increases in language comprehension that reached statistical significance."

Benefits of L-Carnosine in Autism In the Chez, et al study, the researchers report that L-Carnosine may improve receptive language, auditory processing, socialization, awareness of surroundings, and even help fine motor planning and expressive language when compared to placebo. Responses are usually seen between one to eight weeks after beginning treatment.

Dosage Based on his clinical experience in treating autistic spectrum disorders, Dr. Chez recommends 400 mg of carnosine, twice daily, as an effective dose. VRP's Carnosine is available in 50 mg capsules, allowing for smaller doses and greater parental control when titrating to evaluate treatment effectiveness. L-Carnosine can be given with or without food, and since it is tasteless capsules may be opened to mix the white powder with foods and liquids. L-Carnosine is well tolerated by diabetics and can be used with ketogenic and gluten-casein free diets.

Long-Term Use Anecdotal evidence suggests that some autistic children regress in some of their language gains when treatment with L-Carnosine was stopped. All children regained function when dosing was restarted.

Safety Carnosine is considered an extremely non-toxic and safe substance. As with other antioxidants, carnosine acts synergistically when taken with other antioxidants. (For example, when vitamin E was taken with carnosine, levels of both substances were higher in cardiac muscle than when either was taken alone.)

Side Effects Chez reports that manic or hyperactive autistic patients may show signs of over stimulation, including increased irritability, hyperactivity, or insomnia, when given higher doses of L-Carnosine. Symptoms usually respond by decreasing either the dose of L-Carnosine or other medications concurrently. No permanent negative physical changes have been noted in over 1,000 children treated with L-Carnosine since June of 2001. Further-more, Chez reports no signs of adverse liver, blood, kidney, or central nervous system side effects.

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Abstract

Double-Blind, placebo-controlled study of L-carnosine supplementation in children with autistic spectrum disorder

Michael G. Chez, M.D., Cathleen P. Buchanan, Ph.D., Jamie L. Komen, M.A., Marina Becker, R.N.

OBJECTIVE: L-Carnosine is an amino acid dipeptide that may enhance frontal lobe function. We therefore sought to investigate whether L-Carnosine supplementation for children with Autistic Spectrum Disorders

(ASD) results in observable, objective changes in language and/or behavior in contrast to placebo.

DESIGN/METHODS: Thirty-one children (21 M, mean age= 7.45; range = 3.2-12.5 yrs) meeting inclusion criteria were enrolled in an 8 week blinded trial of either 400 mg BID powdered L-Carnosine or placebo. Children were assessed at a pediatric neurology clinic with the Childhood Autism Rating Scale (CARS), the Gilliam Autism Rating Scale (GARS), the Expressive and Receptive One-Word Picture Vocabulary tests (E/ROWPVT), and biweekly parental Clinical Global Impression of Change (CGI), at baseline and 8 week endpoint.

RESULTS: Children on placebo (n=17) did not show statistically significant changes on any of the outcome measures. After 8 weeks on L-Carnosine, children (n=14) showed statistically significant improvements on the GARS total score, GARS Behavior, Socialization, and Communication subscales, and the ROWPVT (all p's<.05).EOWPVT and CARS showed trends in improvements, which were supported by parental CGI.

CONCLUSIONS: Oral supplementation with L-Carnosine resulted in demonstrable improvements in autistic behaviors as well as increases in language comprehension that reached statistical significance. Although the mechanism of action of the amino acid is not well understood, it is believed that it acts to modulate neurotransmission and affect metal ion transfer of zinc and copper in the entorhinal cortex. This may enhance neurological function or act in a neuroprotective fashion.

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In Defense Of Occupational Therapy's Sensory Integration 'Empirical Evidence Related to Therapies for Sensory Processing Impairments'

In October 2002, “A School Psychologist Investigates Sensory Integration Therapies: Promise, Possibility, and the Art of Placebo” was published in Communiqué (Shaw, 2002). The article elicits this question from school psychologists and other readers: “Should I recommend sensory integration therapy for children believed to have sensory processing impairments?"

Children with sensory processing impairments suffer from devastating symptom complexes that significantly affect their self-regulation, self-esteem, social participation (Cohn, Miller, & Tickle-Degnen, 2000) , school performance and other functional abilities (Parham & Mailloux, 2001).

The impact of these impairments on children and their families is substantial. Rigorous research evaluating the effectiveness of sensory integration therapy is crucial and must continue over the upcoming decades. However, these children and families cannot wait for definitive research evidence. They need support, and they need it now.

I have chosen to respond to Shaw’s provocative article by focusing on substantive conceptual issues. First, I address the fundamental flaws in Shaw’s contention that sensory integration therapy is ineffective. Next, I briefly appraise readers about the current empirical research on sensory processing impairments.

Unproven, Not Ineffective Many studies exist suggesting that the intervention works (e.g., Kinnealey, Koenig, & Huecker, 1999) . Studies also exist suggesting that it does not work (e.g., Polatajko, 1991). An appropriate scientific conclusion is that the effectiveness of Occupational Therapy (OT) using a sensory-based approach is neither proven nor unproven. Therefore, Shaw’s deduction is erroneous, and his condemnation of this type of therapy is premature given the lack of rigorous methodology in previous studies.

The knowledge base from research in this field is in its infancy and substantial work is needed before enough rigorous empirical data are available to proffer valid conclusions about the effectiveness of this intervention approach. Empirical evidence characterizing the physiologic and behavioral manifestations of sensory processing impairments is accumulating (Mangeot, Miller, McIntosh et al., 2001; McIntosh, Miller, Shyu et al., 1999b; Miller, McIntosh, McGrath et al., 1999) Furthermore, in a careful pilot intervention, study, we demonstrated significant improvements when OT was administered in a replicable fashion to a homogenous group of children with physiologic indicators of sensory processing impairments (Miller, Brett-Green, Dickinson & James, in preparation).

In addition, our current randomized clinical trial is almost complete. Clearly, answering the question, “Is Occupational Therapy effective for children with sensory processing impairments?” requires a long-term program of research addressing efficacy questions as well as questions about the underlying mechanisms of sensory processing impairments and the validity of sensory processing impairments as a separate diagnostic category.

The Effectiveness of Sensory Integration Therapy-- What We Know The question, “Is sensory-based OT an effective intervention?” cannot presently be answered by empirical data. Shaw (2002) acknowledges 41 articles on this topic; we found over 80.

While opinions differ about the effectiveness of this intervention, no serious scientist would dispute the fact that studies adhering to rigorous criteria for randomized controlled trials have not yet been published. This is not surprising given the inherent difficulty in conducting this type of clinical trial with children. Effectiveness studies administered in natural settings such as a therapy clinic (as contrasted with laboratory settings) are complex and must deal with multiple potential confounds; by contrast, efficacy studies such as those which test the effects of new medications can be much more controlled.

Shaw’s statement that “There is no evidence that sensory integration therapy is or has ever been an effective treatment for children with … disability[ies]” (Shaw, 2002, p. 5) is blatantly misleading, given that in this area of social science, only foundations for sophisticated randomized clinical trials have been laid and no rigorous randomized clinical trial that adheres to all required standards has been published yet.

To be considered reliable and valid, randomized clinical trials must adhere to four key standards (Boruch, 1997) : replicable intervention, homogenous sample, sensitive and relevant outcome measures, and rigorous methodology. Of Shaw’s 41 related studies and our 80 identified studies, none satisfies all four criteria for a rigorous clinical trial. Each of the existing studies has one or more fatal flaws, and evidence from flawed studies, no matter how many there are, cannot constitute “proof” that intervention is either effective or ineffective. For example, as Shaw notes, random assignment of subjects is crucial. Only three of the 80 studies we reviewed implemented random assignment (see, for example, Wilson, Kaplan, et al., 1992) . Thus, even using his own criterion, Shaw is mistaken when he states that there are “plenty of quality outcome studies (41 as of this

writing) …” (Shaw, 2002, p. 5) . Until a series of rigorous randomized trials are conducted, the only unbiased scientific conclusion is that no definitive, reliable and valid evidence exists either supporting or refuting the effectiveness of this intervention. This does not mean that intervention does not work. A lack of effectiveness data is not equivalent to a negation of effect. The four standards to which future randomized clinical trials must adhere are detailed below.

Replicable Intervention. School psychologists and others may ask: “What is ‘sensory integration therapy’?” Although the originator of the approach used that term decades ago (e.g., Ayres, 1972) , today “best practice” by expert clinicians uses a global intervention -- “occupational therapy” (OT). This difference in terminology is not trivial; and it is not semantic. Shaw’s insistence that sensory integration therapy does not work indicates his lack of awareness that current best practice intervention for children with sensory processing impairments is intervention focused on “occupation” as defined below, not treatment using specific sensory techniques in isolation.

OT strives to improve the occupational performance of clients using a transactional approach that considers the person, his/her environment and occupations that are personally meaningful (Baum & Law, 1997) . For example, childhood occupations target daily activities such as eating, dressing, sleeping and playing, as well as school and community activities. Contrary to the uninformed discussion by Shaw, the goal of OT is never to “cure” people. Instead, OT uses purposeful, motivating and meaningful activities in contexts related to life roles to maximize potential and life satisfaction, not to cure individuals. Although OTs may intervene at the impairment level (e.g., to address specific sensory problems in processing tactile, proprioceptive or other sensory stimuli), these interventions are always embedded in occupational functioning (Coster, 1998) . Sensory-based approaches (e.g., OT with a sensory frame of reference or sensory-based OT) are used to establish a foundation for intervention at the level of occupational functioning.

OT is based on dynamic clinical reasoning (Mattingly & Fleming, 1994) . Whenever possible, best practice includes direct treatment to ameliorate sensory processing impairments combined with home, school and community intervention to alter environments/situations ultimately increasing function and life satisfaction. Therapists practicing isolated elements of sensory-based approaches (e.g., strict tactile or auditory protocols alone) are not employing best practice, since they are not intervening within the context of the whole child and his/her environment.

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READERS' POSTS

Art & Soul Fundraiser (Cure Autism Now) Honorary Chairs: Bradley Whitford & Jane Kaczmarek March 1, 2003, 6:00 p.m. Four Seasons Hotel, Newport Beach, CA Donations, sponsorships, tix, please contact Dr. Bill Murphy 949-494-5940 or lagunamurphy@cox.net

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The Adult Living Options Committee of the Louisiana State Autism Chapter is currently working to identify families who would be interested in community living options for their family member with autism spectrum disorder. We have been researching programs that have been successful addressing the living needs of individuals who require special options for the behavioral, social and communication needs specific to those with ASD. We would like input from families throughout Louisiana facing this important area of need. Contact Pat Giamanco, ALOC Chair, in Baton Rouge at 225-757-8890. or e-mail pjmanco@cox.net

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Anyone out there working on a life plan for their autistic child? It seems so overwhelming but I really want to do this for my 3 children. cynjo@earthlink.net

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Improving Play Skills - This video is 54 minutes packed with information on the following: The six different stages of play, Scripting, Schedules, Vide Modeling,Basic,Intermediate and Advanced Target Skill,Task Analysis,Reinforcers,Language Masters and much more. $59.99 plus $7 shipping and handling See address previous post.

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The project to put a full-page ad in the Washington Post changed hands recently to The Autism Autoimmunity Project (TAAP). Because of the transfer, it is unrealistic to expect we will be able to raise the money to place the ad in the Washington Post. The full-page ad is not targeted to run in a publication called "Roll Call," the official publication for Capitol Hill. We feel we need to educate lawmakers about our cause. If you feel motivated to contribute, we'd still love to have all of your children's names present, but if you'd rather your child's name not be on there any longer, please e-mail me at JPiker@aol.com and let me know. To contribute to the ad by credit card call April Oakes at 1-800-939-TAAP (8227) or Jo Pike at 843-423-4678

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