No Behavioral Research? 'Proposals Didn't Pass Experts We Don't Have'

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FEAT DAILY NEWSLETTER Sacramento, California http://www.feat.org

" Healing Autism: No Finer a Cause on the Planet "

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July 25, 2001 Search www.feat.org/search/news.asp

BIAS, ADVOCACY

Also: Advocates for Disabled File Insurance Bias Suit

No Behavioral Research? ‘Proposals Didn’t Pass Experts We Don’t Have’

[Early last month, FEAT Daily Newsletter associate editor

and Ed Berenson discovered that the National Institute of Mental

Health (NIMH) had stopped funding all behavioral research related to autism.

Behavior programs have been proven to be the only treatments so far for

autism. Hundreds of letters from readers poured into the government

institution prompting Director Hyman to respond. He said that there

was no research because, amongst other reasons, the research proposals

submitted did not pass peer review muster. So we took a look at who is on

the NIMH’s peer review committees and discovered that there are no qualified

peer reviews in the field of autism. The experts who are there who decide

what gets funded for autism behavioral research are not “peers.”

Here and Ed Berenson take a closer look at the who’s

who in peer review land at the NIMH for autism.]

It’s official.

There are no peers on the NIMH peer review committee. Not one member

lists a research or clinical interest in the behavioral treatment of autism.

There is one piece of good news: the ITV does include two

members— Aman, Ph.D. and Mark Riddle, M.D.—who are expert in the

pharmacological treatment of autism. Both have published substantial work in

this area.

Two other members, Stephan Arndt, Ph.D., and Guthrie, Ph.D.,

are biostatisticians working in the field of developmental disabilities. Dr.

Arndt is ph Piven’s coauthor on numerous studies of brain size and

structure in autism.

We were unable to locate any autism publications listing Dr. Guthrie

as author.

This gives us 3 committee members, out of 45, who are expert in the biology

of autism.

But we have no one who is expert in the behavioral treatment of

autism—or of any other disorder for that matter. The psychosocial

researchers on this committee all practice interventions like cognitive

behavior therapy.

Knowledge of how to treat autistic children and adults with

medication—or how to analyze the statistics in brain scan studies—simply

does not constitute “training and experience” in the behavioral treatment of

autism.

In case these posts find their way to Doctors Aman, Riddle, Arndt and

Guthrie, we should stress that we don’t intend this last observation as a

criticism. We’re thrilled that these autism researchers are on the

committee; we need them.

We are saying only that being an expert in medication does not make

you an expert in behaviorism.

This is not a peer review committee for psychosocial research proposals in

autism.

* * * * *

The numbers are bad for us in every other way, too. Eleven members

list depression as a research interest; 8 list anxiety. That’s a total of 19

members—out of 41 “peers” (4 people appear to be “public members”)—who study

mood disorders.

Even if Drs. Aman, Riddle and Arndt advocate for every single good

psychosocial proposal that comes to committee, they’ll face the challenge of

convincing the other 41 members who have nothing whatsoever to do with

autism to go along.

And remember: these are 41 members who will be operating on the assumption

that Drs. Aman, Riddle and Arndt don’t know any more about the behavioral

treatment of autism than they do.

Back to depression and anxiety: we think it’s safe to assume that at

least 3 of the 4 “public members” of the committee also belong to the mood

disorder community . . . which puts us up to at least 22 members whose

entire concern in life is anxiety and depression.

And let’s not forget that 18 of the remaining 19 members are also

interested in mental illnesses of various kinds. Schizophrenia, eating

disorders, sociopathy, conduct disorder, with a sprinkling of ADHD folks

thrown in for good measure. This is a peer review committee for psychiatric

disorders, not developmental disabilities.

Put another way: out of 45 committee members, only 4 list a research focus

on any developmental disability of any kind.

The deck is stacked.

Under these circumstances the only way psychosocial research in autism

will be funded is for parents and professionals to continue to take

political action. We can’t rely on a peer review committee that has no peers

to fund good proposals. (We can’t rely on a peer review committee that has

no peers **not** to fund **bad** proposals, either. Given the death of a

healthy research subject at s Hopkins this week, it’s something to think

about.)

As concerned parents and professionals we’ll need to continue to

express ourselves, to keep opurselves apprised of what is happening at the

NIH, to seek information about other autism researchers who have been denied

funding, and to bring what we learn to the public.

The mood disorders community is doing exactly that. NAMI—the National

Alliance for the Mentally Ill—is no shrinking violet when it comes to

lobbying the NIMH. Two years ago NAMI issued a public report, widely covered

in the media, criticizing the NIMH in the strongest possible terms for

underfunding of severe mental illness.

The thesis of that report is that NIMH should fund only studies in

mental illness: the report directly states that the NIMH should not fund any

studies at all having to do with AIDS or Alzheimer’s.

We think it’s more than likely NAMI representatives feel the same way

about NIMH funding for autism (and we’ve heard secondhand reports to this

effect).

We also think it’s safe to assume that if NAMI opposes NIMH funding for

autism they won’t be shy about saying so.

This isn’t to start a shooting war with NAMI. We’re members of NAMI

ourselves, and we’ve always been big fans of Fuller Torrey’s. We wish the

autism community had a Fuller Torrey of our own.

What we’re saying is that we need to be paying attention to the

“competition”—because the structure of the peer review process at the NIMH

places very different disorders in direct competition for funding, not just

at the level of policy and administration, but at the level of the “peer”

review itself.

And we all need to understand, as our friends at NAMI understand, that

funding decisions at the NIMH are, ultimately, political.

Politics means numbers. When hundreds of letters pour into the NIMH in

response to a FEAT posting, things change.

When the Koegels requested “emergency funding” from the NIMH to keep

their research going while they revised their proposal for resubmission,

they didn’t get an answer.

Within a few days of the FEAT deluge, they received a promise of

“bridge funding.”

We have to make ourselves heard, and we are.

We’ve heard that parents and professionals across the country have

been forwarding these letters and posting them to web sites, so please

forward and post anything useful from this one, too.

And please continue to add your names, addresses, emails to the list

of Concerned Parents and Professionals at fundresearch7@....

We especially hope some of you will post our “short form” list of the ITV

committee members and their areas of expertise. ly, we’d like to see

this list posted on every autism site in the country. This is the group of

researchers the NIMH feels is qualified to review psychosocial research in

autism; our parents and professionals should know.

We don’t mean this as a personal attack. The NIMH is funding terrific

proposals in the neuropsychology and genetics of autism, and we’re grateful

and pleased for that. Dr. Hyman is a major researcher in his own right, and

a personal friend of a family affected by autism. He’s smart, dedicated,

thoughtful . . . and he is completely besieged. When you’ve got Fuller

Torrey on the stage, the politics of NIMH funding have moved way past the

squeaky wheel.

We in the autism community must keep up the pressure until the entire

field of psychosocial research and treatment in autism is once again fully

funded.

We’ll be back tomorrow with two important psychosocial studies that were

also denied NIMH funding this cycle.

Until then we’ll leave you with a classic Fuller Torrey salvo drawn from

American

Medical News:

“Dr. Torrey, who has devoted his career to schizophrenia, has long

claimed psychiatry ignores the seriously mentally ill to treat ‘the worried

well.’ He charged that NIMH's failure to adequately fund research stems from

a ‘long-standing grandiosity on the part of behavioral scientists who see

themselves as experts on all forms of human behavior and social problems.’”

We couldn’t have said it better.

A behavioral scientist who studies depression does not possess the

expertise to deny funding to a language remediation study by Bob and Lynn

Koegel — or by any of the other behaviorists and psychosocial researchers

working in the field of autism.

It’s that simple.

NAMI press release and coverage of NIMH criticism:

http://www.nami.org/pressroom/991206.html

http://www.ama-assn.org/sci-pubs/amnews/pick_00/hlsc0103.htm

For a list of the first 18 peer review committee members and their

research interests, send a note to editor@...

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* * *

Advocates for Disabled File Insurance Bias Suit

[issue more directly effects Asperger end of autism spectrum. By

Fernandez in the San Mercury News.]

http://www0.mercurycenter.com:80/premium/local/docs/disabled25.htm

A disabled rights group is suing Bank of America and Provident

Insurance, alleging they discriminate against the disabled by asking unfair

health questions and denying them life insurance.

Sacramento-based Californians for Disability Rights is seeking to

change a mass-solicitation letter that Bank of America sent to its 3.8

million California customers advertising group insurance policies.

Attorneys who filed the lawsuit Tuesday in Alameda County Superior

Court said the bank's letter highlights the hurdles faced by the disabled

community in getting any type of insurance. Although the lawsuit was filed

under a state “unfair business practices” violation code, this week marks

the 11th anniversary of the federal Americans With Disabilities Act.

t Don, Bank of America's San Francisco spokeswoman, said the

company had not “thoroughly reviewed” the lawsuit and had no comment.

According to the suit, the Bank of America letter advertises free life

insurance of up to $1,000 through Provident Insurance, as well as additional

life insurance for monthly payments, to customers who pass the bank's “Good

Health Statement.”

To achieve this benchmark, customers must verify that they haven't

been treated by a doctor in the last five years for problems of the heart or

circulatory system, lungs or respiratory system, stomach or digestive

system, liver or kidneys and brain or nervous system. In addition, the

bank's customers can't have been treated for cancer, AIDS, HIV or diabetes

to be eligible for the plan.

Sidney Wolinsky, the lawyer for Oakland's Disability Rights Advocates,

which represents the plaintiffs, said the health questions are “too

sweeping” and “arbitrary,” effectively denying the disabled of receiving

group insurance coverage at the “front end” of the application process.

The insurance industry is relying on “outmoded data,” Wolinsky said,

adding that the industry is falsely linking low life expectancies with those

who have disabilities. Just because someone suffered polio as a child and

has seen

a doctor for regular checkups, for example, doesn't mean that person is

going to die at an abnormally early age, Wolinsky said.

For the last two years, Wolinsky's group has monitored at least 100

different types of insurance policies -- both life and health -- ensuring

that they don't discriminate against the disabled. Bank of America's

campaign is by far the worst, he said.

At a Tuesday press conference, Wolinksy pulled out a copy of what he

deemed a good life insurance solicitation letter, marketed toward California

lawyers. Only five health questions on this Transamerica Occidental Life

Insurance Company letter are posed: Has the person been hospitalized for

diabetes, high blood pressure or heart disease, and does the person smoke or

participate in a “hazardous” hobby, like piloting or scuba diving?

Those questions are legal, Wolinsky said, because they are in areas that

have hard data to support whether people's life expectancies are reduced if

they suffer these medical problems or engage in these activities.

Bank of America has been known to respond to issues raised by the

disabled community.

Last year, several banks around the country, including Bank of

America, began offering talking ATM machines for the blind in response to

political pressure from the Hayward-based California Council of the Blind. A

retired judge mediated the talks, ensuring the deal would be legally

binding.

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Lenny Schafer, Editor PhD Ron Sleith Kay Stammers

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