SCHAFER AUTISM REPORT "Healing Autism:

No Finer a Cause on the Planet"

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September 20, 2002 CALENDAR LISTING: EVENTS@doitnow.com

CARE

* Mental Health Parity Opponents Make Their Case in US Congress

PUBLIC HEALTH

* My Name is Oliver and Please May I Speak To The Minister About MMR?

* Flu Vaccine Contains Mercury in Ireland

TREATMENT

* Risperidone in Children With Autism and Serious Behavioral Problems

FUNDRAISER

* Network Stars to Auction 'Clothes Off Their Backs' From Sunday's

Emmy Awards

EDUCATION

* Indiana School Distrs. "INDY 500" Approach To Least Restrictive

Environment

COMMENTARY

* Comments About "Recovery" and "Science" Demand A Response

Mental Health Parity Opponents Make Their Case in US Congress

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Even as key members of the US Congress continue negotiations with the Bush administration over how to guarantee parity between insurance benefits for mental illness and those for other ailments, opponents of the leading bill in Congress argued on Tuesday that its enactment would be a mistake.

With health costs already rising at double-digit rates, "to add mandates to the current third-party payment system is just going to cause it to collapse," said Rep. Jim DeMint, R-S.C., at a forum sponsored by the National Center for Policy Analysis (NCPA). "So anyone who's arguing for mandates at this point is really arguing for single-payer," he said, assuming the government would take over the health insurance system if it truly fell apart.

DeMint agreed that it is unfair that patients with mental illness are frequently offered lower benefits than those with other ailments, but he said a better way to address the problem is to move to a "consumer-driven" system, in which patients are given money to spend on healthcare and decide themselves how to allocate it. "That would be better coverage" for mental health, he said.

In agreement was NCPA President John Goodman, one of the earliest proponents of Medical Savings Accounts and other ways to make individuals more responsible for their own healthcare. "Patients are the best monitors of their care, they should control the money," he said.

Paul Dennett of the American Benefits Council said that in addition to the cost problems, the bill sponsored by Sens. Pete Domenici, R-N.M., and Paul Wellstone, D-Minn., is too ambiguous.

While it purports to bar plans that offer different visit limits or copayments for mental health services than for other services, he said, most plans have visit limits for other types of care, such as physical or occupational therapy. And virtually every plan has different levels of cost-sharing, such as for doctor visits, emergency room care, and prescription drugs, he said, making it unclear which levels mental health benefits should match.

Dr. Sally Satel, a psychiatrist representing the American Enterprise Institute, questioned the bill's requirement for coverage of all mental disorders, rather than just the most serious ones. "It makes some sense to hold some diagnoses to a different standard," she said, adding that the potential cost "of people with mental health problems rather than mental illness seeking unrestricted care is not trivial."

But Dr. Henry Harbin, Chairman of Magellan Health Services, the nation's largest managed mental health firm, said the vast majority of claims his firm handles--85%--are already for the more serious mental disorders.

Dr. Harbin said that the cost of a parity requirement is hardly prohibitive. While several states have passed similar laws over the past several years, he said, "at Magellan we have yet to see a cost increase of greater than 1% as a result of a state parity law."

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PUBLIC HEALTH

My Name is Oliver and Please May I Speak To The Minister About MMR? Can anyone help?

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Autistic schoolboy Oliver Loch wandered the deserted corridors of power at the National Assembly yesterday looking for someone to talk to about his problems.

In the absence of Health Minister Jane Hutt and her deputy Brian Gibbons, the six-year-old was reduced to handing over a high-profile petition to civil servants.

The Newport youngster cut a lonely figure roaming the almost empty building as he waited with his mother Julie for officials to make their way across the city to meet him.

Oliver, who developed the devastating condition soon after being vaccinated with the controversial measles, mumps and rubella jab, had made the journey to the capital on behalf of all the children in Wales suffering from regressive autism to call for immediate tests to determine the root of their illnesses.

But he and his mother left Cardiff Bay disappointed and angry that the Health Minister could not find five minutes in her schedule to hear their concerns.

Mrs Loch said, "The issue about whether MMR is involved is secondary to what is essentially a question of child health. For the minister not to acknowledge that is disgraceful."

William Graham, AM for South Wales East, said, "It's disappointing that the minister was not here as this is a matter of wide interest. That the minister of deputy minister were not available to take the petition in person is a poor show for Wales."

As Oliver was waiting for someone to collect his petition children in England, Scotland and Ireland were handing in similar documents to their governing bodies.

They are all calling a full medical investigation into their condition and tests to determine the extent of the damage caused by the measles.

There are thought to be 20,000 children diagnosed with regressive autism in the past decade in the UK. Most of these children, like Oliver, developed normally before regressing.

Tests have revealed that Oliver's blood and digestive system are infected with the same strain of measles used in the MMR vaccine.

Mrs Loch said, "If it isn't a vaccine that has caused these problems and it is purely coincidental, at least investigate it to find out what has happened to our children. Children don't develop normally for a year and then regress.

"Our petition seeks to bring the plight of our children to the public's attention and we ask the Government to provide for the routine testing of our children.

"For the sake of these children the Government should put aside any fears it might have that by addressing this condition it would be underminingits own case for the present measles vaccination programme."

The petition was received by head of family health Peter Lawler and Dr Gwen Lowe, a public health doctor working with the Assembly.

They said it would be passed on to Ms Hutt, who would respond to the Loch family in due course.

It would also be circulated to all the members of the Assembly.

A spokeswoman for Ms Hutt said she had prior commitments in London which could not be changed and Dr Gibbons was undertaking other engagements on behalf of the minister.

"An Assembly official did go down to meet Julie Loch and all her comments will be passed on to the minister," she said.

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Flu Vaccine Contains Mercury in Ireland

Autism campaigner Kathy Sinnott has expressed concern over the inclusion of mercury in the flu vaccine being promoted by the Department of Health.

Thiomersal, a mercury-based vaccine preservative, was implicated in the MMR controversy.

Campaigners believed the build-up of mercury from other childhood vaccines, such as DPT, rendered vulnerable children's immune systems unable to cope with the live MMR vaccine.The MMR jab does not contain thiomersal.British and American health authorities have recommended that vaccine companies phase out the use of thiomersal.More than 500,000 doses of Agrippal, which contains thiomersal, have been imported for this year's flu vaccine campaign, which begins on Monday.In a circular to doctors, vaccine producers Chiron Vaccines said the content of thiomersal has been reduced.However, Kathy Sinnott, whose son Jamie is autistic, described mercury as a highly-toxic substance."There is no safe level of mercury.

They say there is only a trace amount of thiomersal.A trace amount of mercury is more than the body needs.

It is interesting that the company says that reducing the amount of thiomersal makes the vaccine safer that is admitting there is a problem," she said.While the flu vaccine is targeted at the elderly, it could pose a risk to autistic children, she said.The Department of Health recommends people aged over 65, those with chronic diseases such as heart or kidney disease and those with a suppressed immune system, be vaccinated against flu.Chiron medical director Dr Anjelica Banzhoff said a link between thiomersal and autism had never been proven, but admitted scientific committees have not yet come to a conclusion on the potential toxicity of thiomersal to foetuses.For this reason, vaccine companies have agreed to remove the mercury preservative from children's vaccines.A spokeswoman for the Irish Medicines Board said they were not concerned about the vaccine."It is quite rare that it is given to children.

The trace element (of thiomersal) is so small we are not concerned about it.

It is very carefully prescribed," she said.A spokesman for the Department of Health urged target groups to visit their GP to receive the vaccine.

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Risperidone in Children With Autism and Serious Behavioral Problems McCracken JT, McGough J, Shah B, et al.

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The authors conducted a randomized, controlled trial to determine the effectiveness of risperidone, an antipsychotic medication, in improving behavior in children with autism. The authors note that, in addition to the problematic core symptoms of autism, many autistic children also suffer from behavior problems that can limit the effectiveness of educational and other therapeutic efforts. They note that few drugs have been shown to improve behavior in children with autism and that the drug most consistently shown to do so (haloperidol) has significant side effects limiting its use. The atypical antipsychotic medication risperidone may hold the promise of effectiveness with fewer side effects.

Children 5 to 17 years of age at 5 centers around the United States were included in the trial. Children were excluded if their mental age was < 18 months, if they had severe medical problems or psychiatric diagnoses other than autism, or if they were already on a behavior-modifying medication that was believed by parents and clinicians to be effective. Children with seizures were included if the seizures had been under good control. The first portion of the trial was a randomized, double-blind, placebo-controlled period of 8 weeks. The outcomes measured included scores on 2 behavioral checklists. Children received risperidone doses adjusted for their weights. Of the 101 children enrolled in the trial, 82 were male. Forty-nine received risperidone and 52 placebo. Two thirds of the children were Caucasian.

Children in the treatment group demonstrated a 57% reduction in irritability (measured by the Irritability subscale of the Aberrant Behavior

Checklist) compared with a 14% reduction in the placebo group. In addition, 69% of the treatment group met the authors' definition of a "positive response" (25% reduction in irritability score and improvement on a more global behavior scale) compared with 12% of the placebo group. There were also significant reductions in stereotypic behaviors and hyperactivity in the treatment group compared with placebo group, but neither group improved their social withdrawal or inappropriate speech behaviors. Side effects of treatment included some sedation (which improved with time on the drug), an average weight gain of 2.7 kg in treatment subjects (compared with 0.8 kg gain on average in placebo subjects), and slightly more tremor.

Reviewer Comment - The authors note that the small sample size in this study may preclude making very strong statements about the safety of risperidone in children with autism, but having controlled-trial evidence of the effectiveness of the medication in improving the behavior of children with autism is a significant step forward. They also note that they did not look for improvement in the core symptoms of autism. I am sure that parents, teachers, and physicians of children with autism would be thankful for any improvement in behavior that may allow other interventions, be they educational or therapeutic, to be more effective.

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FUNDRAISING

Network Stars to Auction 'Clothes Off Their Backs' From Sunday's Emmy Awards

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PRNewswire via COMTEX - Bradley Whitford ('The West Wing') and Jane Kaczmarek; ('Malcolm In The Middle') Rally Fellow Actors and Emmy Nominees; To Auction Off Their Formal Wear for Charity; All Proceeds to Benefit Cure Autism Now, Heifer International,; UNICEF and Union of Concerned Scientists;

WHO: Jane Kaczmarek ("Malcolm In The Middle"); Bradley Whitford,; Martin Sheen and Richard Schiff ("The West Wing"); Patricia; Heaton, Ray Romano and Brad Garrett ("Everybody Loves; Raymond"); Eric McCormack, Megan Mullally and Sean Hayes; ("Will & Grace"); Jennifer Garner ("Alias"); Wendie Malick; ("Just Shoot Me") and Patricia Clarkson ("Six Feet Under");

WHAT: The first ever "Clothes Off Our Back" Emmy outfit charity; auction where today's hottest television stars and Emmy; nominees donate their award show formal wear to auction to the; public -- all in the name of charity.; All proceeds from the auction to benefit Cure Autism Now,; Heifer International, UNICEF and Union Of Concerned Scientists.;

WHEN: Monday, September 23, 2002, for two weeks.

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EDUCATION

Indiana School Distrs. "INDY 500" Approach To Least Restrictive Environment

During the 2001-2002 school year, Bobby Brown, a six-year-old Indiana boy diagnosed with autism, made progress in an educational program paid for by the Bartholomew Consolidated School District ("the school district") which included speech, occupational therapy, intensive 1:1 Verbal Behavior Applied Behavior Analysis interventions at home and a half-day (mainstream) kindergarten classroom four mornings a week. Bobby was being supported in his half-day kindergarten classroom by one of his highly trained and experienced ABA therapists, both of whom were being paid at an hourly rate of only $12/hr. The annual cost of Bobby's ABA therapists, for purposes of the home and school components, totaled approximately $22,000 per year.

For purposes of the 2002-2003 school year, after assessing Bobby's level of functioning as being somewhere between 6 and 24 months across a variety of domains, the school district decided that as of September, 2002, Bobby should start attending kindergarten on a full-time basis, five days a week, and that while there should be a continuation of "verbal behavior" type ABA interventions in school, the home-based ABA component should come to an end. The school district also decided to look for a different classroom aide. Noted experts in the field of autism, including James Mulick, Ph.D. and Carl Sundberg, Ph.D, concluded that such a move would be both premature and inappropriate because (a) Bobby needs consistency and continuity in his educational program, (b) Bobby barely has the prerequisite skills to benefit from a half-day kindergarten setting, (c) Bobby's classroom support aide needs a certain level of training, experience and skill and (d) Bobby's home-based ABA program (which is teaching Bobby the prerequisite skills) needs to continue. In light of the foregoing dispute, Bobby's parents were compelled to take the Bartholomew school district to due process. Bobby's due process hearing was made open to the public.

The Bartholomew school district, ostensibly anticipating litigation, apparently had retained its own experts way back in the Fall of 2001. The school district paid its experts approximately $20,000 for their opinions and recommendations. This significant expense, which is essentially equal to the annual cost of Bobby's ABA therapists, is in addition to thousands of dollars which the district will have to pay in attorneys' fees. Unfortunately, the Bartholomew school district failed to heed the advice and recommendations which they had paid for.

One of the school district's handsomely compensated experts testified that since the school district was proposing the continuation of Bobby's verbal behavior (ABA) program, it was important for the school district to retain the services of a verbal behavior consultant who would have the training and expertise to oversee and guide Bobby's verbal behavior ABA program. Although this recommendation was communicated in writing to the school district by its own expert back in February of 2002, even as late as September of 2002, some seven months later, the school district still had not retained a verbal behavior consultant! Significantly, the school district was forced to admit that it had not placed even a single advertisement to attract candidates for this position.

Both of the school district's experts testified that it was essential that there be a systematic "transition plan" to support and facilitate increasing Bobby's kindergarten time from four mornings a week to mornings and afternoons, five days a week. One of the school district's experts quantified that even under the best of circumstances, such a plan would need to be effectuated over 4-6 months, depending upon Bobby's progress.

This apparently was "news" to the district's special education director, who testified that he did not believe that it was at all problematic to jump Bobby from four mornings a week to a full-time, five-day schedule starting in September, 2002. The school district's special education director's position on this issue may help to explain why the school district failed to propose or develop any meaningful transition plan, let alone one which would cover the 4-6 month time frame which the school district's own expert said would be necessary even under the best of circumstances.

In addition to the foregoing, evidence was presented that the school district's IEP for the 2002-2003 school year was improperly predetermined.

Bobby's experts testified that for the 2002-2003 school year, until such time as Bobby acquires greater readiness skills, the school district should simply maintain the current status quo.

Post-hearing briefs are scheduled to be exchanged in October. The hearing officer's decision is expected in November.

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COMMENTARY

By Frank J Marone, PhD, BCBA

Maurice's Comments About "Recovery" and "Science" Demand A Response

- in the Association for Science in Autism Treatment (ASAT) Newsletter

Catherine Maurice's recent comments about "Recovery" and "Science" demand a response.

Science is inherently skeptical. Ms Maurice for some reason treats this skepticism as an attack. Yet, the 'treatment' of 'autism' is replete with snake oil remedies. Megavitamins, Gluten Free Casein Free Diet, Autitory Integration Therapy, Deep Pressure Brushing, Secretin, and many more unproven 'recovery methods' are all pursued zealously by many, on the basis of little or no empirical evidence of effectiveness. Alongside this there is more empirical reason to believe that implementation of the principles of Applied Behavior Analysis can have a predictable, measurable effect.

Ms Maurice seems to say that asking questions is an obstacle to treatment and 'recovery'. The use of the word 'recovery' is inherently problematic. 'Recovery' from what? We don't know what 'autism' is. At present, we utilize a purely behavioral diagnostic procedure without the possibility of physiological quantitative confirmation.

Meantime, parents and professionals are encouraged to pursue 'recovery'. All it takes is just enough of just the right interventions, especially discrete trials. This is insulting and disrespectful of the individuals these people assert to help, besides presenting a false message. And, it creates tremendous obstacles.

Most (more than half) of the parents with whom we work are convinced that their children will become 'normal' if given just the right combination of intensive intervention; and, are completely uninvolved in this effort (spend virtually no time implementing ABA procedures), insisting that paid support, ranging from school district programs to individual tutors, is the answer. This leads to situations in which children have been receiving 'discrete trials' drills for several years, sitting at a table naming pictures, but have not yet learned to use the toilet properly, eat at the table, watch a video start to finish, play alone constructively, play with others, stay with an adult while in the community, engage in exercise, participate in everyday community activities, appreciate what requests may be made in a particular situation, accept 'no' for an answer to a request, etc., etc., etc. While many of these children demonstrate an ability to name numerous pictures while seated at 'their' table, language use is virtually nonexistent in context.

Perhaps Ms Maurice is unaware of these widespread problems. Nevertheless, it is difficult to understand what purpose is served by attacking scientific questioning and adopting a "you're either with us or agin us" stance. This is very reminiscent of the current controversy over vaccinations, mercury, and even the actual prevalence of 'autism'.

Because ABA is the most validated method of successfully impacting children called autistic, it seems imperative to do everything to avoid allowing it to become submerged in the quagmires that surround most other 'approaches' whose effectiveness continues to be asserted without evidence. Scientific inquiry is the way to accomplish this.

[Dr. Frank Marone is a Board Certified Behavior Analyst living and working in the San Francisco Bay Area. Dr. Marone has been providing positive applied behavior analysis services for children and adults with autism for almost 30 years. He has parented two children considered nondisabled and two children with profound disabilities. He writes commentaries for the SAR regularly.]

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