Dr. Hirtz. Mr. Chairman, I am Deborah Hirtz of the National
Institute of Neurological Disorders and Stroke [NINDS], at the
National Institutes of Health.
I have been asked to appear before you today to give the
committee and the families of autistic individuals who are here
a sense of what we have learned from research, what we hope to
achieve, and I want to explain that we at the NIH share the
sense of urgency that autistic individuals and their families
and advocates feel with regard to unlocking the mysteries of
this devastating disorder.
As a physician who takes care of children with neurological
disorders including autism, this urgency has a particular
intensity for me as well. By presenting information about a
broad array of NIH autism research activities, I will try to
convey to you the strong commitment of the NIH to increasing
our knowledge about autism, what causes it, how best to
diagnose and treat it, and we hope not too far in the future,
perhaps even how to prevent it.
I would also like to tell you that over the last 5 years,
the total NIH funding for autism research has nearly
quadrupled. It was $10.5 million in fiscal year 1995 and $40
million in fiscal year 1999.
We now know that autism is much more common than we
previously thought. Estimates vary widely, but recent studies
suggest that as many as 1 in 500 people may be affected by some
form of autism. Recent reports suggest that the number of
children with autism may be increasing substantially. It is not
clear whether the reported increases can be accounted for by
improved or expanded diagnosis, or by the increasing
availability of services for autism and it would be necessary
to study the trends of that prevalence over time.
The NIH recognizes the pressing need to look into these
issues and to do this work and is actively working to design
studies that can give us knowledge in these areas. Accurate and
consistent diagnosis of autism is one of these difficult areas.
To address this problem and in response to the requests of
concerned parents, the NIH sponsored a 1998 meeting of major
medical and professional societies, parent advocacy groups and
Federal agencies to review existing evidence for autism
screening and diagnosis. Based on the assembled research and
evidence, a consensus statement is near completion as a
practice parameter, which is a professional guideline for
recommended procedures, criteria and timing for screening and
diagnosis in autism. This will be the first time that such a
multidisciplinary group has reached consensus on screening and
diagnostic procedures in the area of autism. The specific
practice parameters or clinical recommendations, once approved,
which we expect to be shortly, by the boards of various
relevant professional societies, will be published in widely
read medical journals.
In the vast majority of cases, no specific underlying cause
of autism can be identified. A variety of genetic, metabolic,
infectious and unknown factors may be important. The NIH
supports research directed at exploring the possible role of
these various factors and is exploring the feasibility of a
very large, multi-agency, prospective study that could shed
light on some of these questions.
A working group convened by NIH in 1995 reached a consensus
that for at least a significant subgroup of people with autism,
there appears to be a genetic susceptibility that most likely
involves multiple genes, and the NIH has conducted two major
meetings on the genetics of autism.
An exciting development this past year has been the
identification of the gene for Rett syndrome, an autism
spectrum disorder. In addition, genetic ``hot spots,''
potential chromosomal locations, for more classic forms of
autism have been identified. In another area, NIH is supporting
a major pediatric brain imaging initiative to learn how the
brain develops in normal infants, children and adolescents.
This will provide important data for comparison in studies of
developmental disorders such as autism.
Although there is currently no known cure or treatment
which can reverse all the symptoms of autism, interventions
designed to alleviate specific symptoms are available. In
November 1999, the NIH held a workshop in conjunction with the
Department of Education on treatments for people with autism
and other pervasive developmental disorders. The purpose of
this workshop was to evaluate the current biological,
behavioral, psychopharmacological and biomedical treatments in
autism and to identify critical research needs in autism
treatment. The written reports and recommendations from the
working groups at this meeting have recently been assembled and
are currently being reviewed by the members of the NIH Autism
Coordinating Committee, which is a group from various
institutes involved that coordinates the NIH research
activities, and also by the representatives of autism advocacy
groups to see where we go from here in pursuing various avenues
of treatment research.
I have just very briefly described some of the NIH autism
research activities. There are several more presented in my
written testimony.
I would like to add that autism research is a major
priority for the NIH, and we are committed to continuing to
work to expand our efforts.
I have tried to stick as closely as I could to the 5-minute
limit, Mr. Chairman, so that concludes my prepared statement,
but I would be pleased to respond to any questions you might
have.
Mr. Burton. And your full statement will appear in the
record.
Note/Warning:
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.
[Note: Autism is NOT a disease, but a neurodevelopmental difference and disability.]
Fact: Vaccines Do Not Cause Autism.
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