Funding Autism Research
A hearing was held on progress made since the subcommittee’s April 17, 2007, hearing on autism in the United States.
Dr. Insel talked about autism research initiatives the the National Institutes of Health and various statistical analyses associated with research.
He was followed by a panel of parents who testified about their experiences with autistic children and treatments for the disease
DEPARTMENTS OF LABOR, HEALTH AND HUMAN SERVICES, AND EDUCATION, AND RELATED AGENCIES APPROPRIATIONS FOR FISCAL YEAR 2008
TUESDAY, APRIL 17, 2007
U.S. Senate Subcommittee of the Committee on Appropriations, Washington, DC. The subcommittee met at 2:05 p.m., in room SD-124, Dirksen Senate Office Building, Hon. Tom Harkin (chairman) presiding. Present: Senators Harkin, Durbin, Reed, and Specter.
DEPARTMENT OF HEALTH AND HUMAN SERVICES
STATEMENT OF DR. JULIE GERBERDING, DIRECTOR
OPENING STATEMENT OF SENATOR TOM HARKIN
Senator Harkin. Good afternoon, the Subcommittee on Labor,
Health, Human Services, Education, and Related Agencies of the
Appropriations Committee will come to order.
The subcommittee has invited a number of distinguished
witnesses to appear before this hearing and this subcommittee,
to tell us more about a very important issue, autism.
The Centers for Disease Control and Prevention estimates
that 1 of every 157 children born this year will be diagnosed
with autism. Millions of families across the country are facing
the very real difficulties in coping with this disease.
It’s tough on parents who would do anything to help their
children at home, while at the same time, fighting to find the
supportive services that their children so badly need. We hear
the heartbreaking stories, day after day, about families just
trying to get the best treatments for the children, and
wondering why it’s their family that faces this ordeal.
I know we have heard from several families and groups, and
I want to thank them for sharing their stories.
This hearing will address a number of questions. First, is
the prevalence of autism on the rise, both in the United States
and other countries? If so, why is that? Is there really an
increase in children of autism, or is the disease being better
diagnosed? I keep hearing both sides of that debate.
Second, of course, what causes autism? Is it environmental,
is it genetic? Is it a combination of both? Imagine my
surprise, when I read the last issue of Discover magazine. It
had a big story in there about understanding autism, and the
subtitle is, The Answer May Lie in the Gut, Not in the Head,
saying that there may be a direct link between physical
illness–physical illness–and the onset of autism. So, again,
I’ll be asking questions about that article. [Discover
magazine, April 2007, ``Autism: Its Not Just in the Head,” by
Third, what therapies work best for children with autism?
Are parents able to find the services they need for their kids,
and at what cost?
As Dr. Favell will point out, and also Marguerite Colston
in her testimony, that in looking for a cure and putting more
research dollars out there, and trying to find how we have a
cure, or a good intervention, we can’t forget the families need
help now. Now–not 10 years from now, they need help right
now–in finding the best possible support for their children.
So, we have two panels of witnesses today. The first panel
will be, of course, Dr. Julie Gerberding, the Director of the
Centers for Disease Control and Prevention, who will talk about
the incidents, and prevalence, of autism. Dr. Thomas Insel, the
Director of the National Institute of Mental Health, will bring
us up to date on some of the science.
Our second panel will include Dr. Judy Favell, who has done
great work with young children with autism; Marguerite Colston,
a parent of a child with autism who can speak to the issue from
the perspective of a parent; Mr. Bob Wright, the Co-Founder of
Autism Speaks; and, Bradley Whitford, actor; as well as, former
Deputy Chief of Staff to President Jed Bartlett (on TV, of
course) and foremost an advocate for children with autism.
[The statement follows:]
Prepared Statement of Senator Tom Harkin
Good Afternoon. The subcommittee has invited a number of distinguished witnesses, this afternoon, to bring us up to date on a very important topic: the status of autism, and of autism research, in the United States. The Centers for Disease Control and Prevention estimates that one of every 157 children born in the United States this year will be diagnosed with autism. Millions of families are grappling with the profound difficulties of understanding and coping with this disease. My heart goes out, in particular, to parents who go to heroic lengths to assist their autistic children at home, and who fight the daily fight to secure the support services that their children so badly
This hearing will look at several key questions:
First, the number of diagnosed cases of autism is on rise, both in the U.S. and in other countries. Why is this? Are we simply doing a better job of diagnosing autism, or has there been a real increase in the incidence of this disease?
Second, what causes autism? Are the causes environmental? Are they genetic? My guess is that it is a combination of the two, but I am eager to hear the views of our witnesses.
Third, which therapies work best for children with autism? And are parents able to find the services they need for their children, and at what cost? As Dr. Favell points out in her testimony: while doing research on causes and cures is important, people need help now to overcome or lessen the effects of autism.
Last, what is the outlook for finding a cure for autism? And what more can the federal government do to help?
We will have two panels of witnesses today. The first panel includes Dr. Julie Gerberding, the Director of the Centers for Disease Control and Prevention, who will talk about the incidence of autism; and Dr. Thomas Insel, Director of the National Institute of Mental Health, who will bring us up-to-date on the science and research.
Our second panel includes Dr. Judy Favell, who has done great work with young children with autism; Marquerite Colston, a parent of a child with autism, who will speak to this issue from the perspective of a parent; Bob Wright, the co-founder of Autism Speaks; and Bradley Whitford, former deputy chief of staff to President Jed Bartlett–actually, a very accomplished actor–and an outspoken advocate for children with autism.
Senator Harkin. With that, I will turn to my colleague,
Senator Specter. …
Autistic people have fought the inclusion of ABA in therapy for us since before Autism Speaks, and other non-Autistic-led autism organizations, started lobbying legislation to get it covered by insurances and Medicaid.
ABA is a myth originally sold to parents that it would keep their Autistic child out of an institution. Today, parents are told that with early intervention therapy their child will either be less Autistic or no longer Autistic by elementary school, and can be mainstreamed in typical education classes. ABA is very expensive to pay out of pocket. Essentially, Autism Speaks has justified the big price tag up front will offset the overall burden on resources for an Autistic’s lifetime. The recommendation for this therapy is 40 hours a week for children and toddlers.
The original study that showed the success rate of ABA to be at 50% has never been replicated. In fact, the study of ABA by United States Department of Defense was denounced as a failure. Not just once, but multiple times. Simply stated: ABA doesn’t work. In study after repeated study: ABA (conversion therapy) doesn’t work.
What more recent studies do show: Autistics who experienced ABA therapy are at high risk to develop PTSD and other lifelong trauma-related conditions. Historically, the autism organizations promoting ABA as a cure or solution have silenced Autistic advocates’ opposition. ABA is also known as gay conversion therapy.
The ‘cure’ for Autistics not born yet is the prevention of birth.
The ‘cure’ is a choice to terminate a pregnancy based on ‘autism risk.’ The cure is abortion. This is the same ‘cure’ society has for Down Syndrome.
This is eugenics 2021. Instead of killing Autistics and disabled children in gas chambers or ‘mercy killings’ like in Aktion T4, it’ll happen at the doctor’s office, quietly, one Autistic baby at a time. Different approaches yes, but still eugenics and the extinction of an entire minority group of people.
Fact: You can’t cure Autistics from being Autistic.
Fact: You can’t recover an Autistic from being Autistic.
Fact: You can groom an Autistic to mask and hide their traits. Somewhat. … however, this comes at the expense of the Autistic child, promotes Autistic Burnout (this should not be confused with typical burnout, Autistic Burnout can kill Autistics), and places the Autistic child at high risk for PTSD and other lifelong trauma-related conditions.
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