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
AUTISM AND THE ENVIRONMENT
Senator Harkin. Mr. Whitford, thank you very much. You give
a very powerful statement.
I thank you all very much, for taking the time to be here–
as I said earlier–but also for your day in and day out
efforts, on behalf of our families and our kids with autism.
I’ll begin this round of questions now, and then yield to
my friend from Illinois.
I want to start with our first panel, Dr. Insel, and I
don’t know if you’re aware of this magazine article, the
Discover magazine article that came out–maybe you are, maybe
not–but I wrote down what you said in your testimony, you said
that we must focus on this as a brain disorder.
At least that’s what I wrote down. I hope I can challenge you on that, and see
what your response is.
This Discover magazine article had a map of Texas, and the
top map was the autism rates per 10,000 from 1990 to 1993, up
on top, you can’t see it, but the bottom two are what’s
important. It was the autism rates per 10,000 of the last few
years of the last decade, and then it had the pounds of
environmental toxic release. When you overlay one over the
other, it is frighteningly the same.
So, is there something in the environment? Why should we
just focus on it as a brain disorder, but maybe it’s, maybe
there’s something environmental out there, that we also ought
to focus on, which is one question, and it leads to the second
part of it–how much of the money, of the $108 million that you
invest in autism research, is on environmental aspects, looking
at some of the environmental aspects of this?
Dr. Insel. These are important questions, Senator Harkin,
and the way that we think of this is that there is an
environmental component, but it interacts with some genetic
component. The reason we believe in the genetic piece of this,
which is driving the brain pathology, is that there is such a
high concordance in identical twins, it’s difficult to explain
that based on just an environmental factor, because in non-
identical twins, the rate goes way, way down.
Senator Harkin. Fraternal twins.
Dr. Insel. Right. So, there’s some effect–it’s not 100
percent concordance, so there’s something beyond genetics–so
we’re talking about both environment and the genes.
What are we doing about the environment? As you know, the
2007 budget that was approved by this committee involved an
appropriation for the Gene Environment Initiative, GEI, that
was a particular request from, in this case, the Secretary–not
simply through NIH, but it was part of the Secretary’s budget.
This, you know, our Secretary Levitt came from EPA, and he came
to Health and Human Services with a tremendous interest in
What he was recommending here was that we bring the very
best genetics and the very best abilities on the environmental
side together in this new initiative, and the $40 million will
be spent each year for 4 years. The first grants in that arena
are just being funded in the next few months—-
Senator Harkin. Did you say $40 million?
Dr. Insel. Per year, for the next 4 years.
Senator Harkin. On the environmental aspects?
Dr. Insel. Not specifically for autism, but generally, if
we’re looking at gene-environment interactions–part of what’s
hung us up here—-
Senator Harkin. Through your Institute?
Dr. Insel. This is the National Human Genome Research
Institute doing the genetics part, and the National Institute
of Environmental Health Sciences, which is developing the
We have great precision on genetic sequencing, not such
good precision on environmental exposure. So part of this will
be to develop the tools, so that we’ll have sensors, and other
ways of looking at environmental exposures, often well after
Senator Harkin. I still need to know, and if you don’t have
it right now, if you’d provide it for the record, about how
much of that $108 million goes in for environmental.
Dr. Insel. We can provide that for the record.
[The information follows:]
Environmental Role of Autism Research
Of the $108 million invested in autism research in fiscal year
2006, $14 million was invested in environmental aspects of autism
research by the following Institutes and Centers: NINDS, NICHD, NIEHS,
NIMH, NCRR, and OD.
Senator Harkin. Second, if we were to provide the increase
that the groups have asked for, how would that money, that
extra money be utilized in the next fiscal year? I’d like to
have some handle on that.
Dr. Gerberding, I was shocked when my daughter and her
husband showed me the schedule of vaccinations for my first
grandchild in the first 2 years of his life. I was shocked.
Evidently this is what is required; and they have good
pediatricians, they go to great doctors out on the west coast,
but I guess I just never realized that. I think, when my kids
were born we had a couple, maybe three shots, but we didn’t
have this long list. I think 12 or 15, is that correct?
Mr. Wright. Thirty-one.
Senator Harkin. Thirty-one, thank you, Bob. Thirty-one.
Mr. Wright. Zero to 18 months.
Senator Harkin. Please, go ahead, what did you say?
Mr. Wright. Between zero and 18 months, there are 31,
Senator Harkin. Okay. That’s the list I looked up. They
were upset, they were asking me, I said, “Well, I’m not a
doctor, how do I know?” So, they wanted me to ask you.
I mean, I’m serious, they wanted me to ask. They’re really
concerned about this. About all of those vaccinations in the
early ages. When you have a small child that’s not an adult, I
would be concerned if I had that many shots in 18 months. There
has been, and there have been some, at least, allegations, some
thought that perhaps, many of these, at least with the use of
thimerosal, which was a mercury additive for preservatives,
might have had some influence in that, although thimerosal has
now been taken out.
Mr. Wright. Not entirely.
Senator Harkin. Except in the influenza, the influenza shot
still has thimerosal, am I right?
Mr. Wright. That’s right.
Senator Harkin. I think that’s right.
Could you address yourself to that? Just the number of
vaccinations, the fact that we still put thimerosal in the
influenza shot, but it’s been taken out of the measles, mumps
and rubella, I understand.
Dr. Gerberding. It’s important, first of all, to recognize
how many children are alive today because of those shots, and
how little vaccine-preventable disease we see in this country
as a consequence of the enormously successful immunization
Keep in mind that an immunization is really just a way to
expose a child to a specific protein or antigen that causes it
to develop an immune response, and that happens to children all
of the time, naturally. They’re exposed in their food, they’re
exposed to things they come in contact with their friends and
with day care, so while they may receive intentional exposures
to protect their health, they’re naturally doing the same thing
to themselves, just as part of being a child, and being exposed
to the environment.
The concern about the safety of vaccine is something that
we take very seriously at CDC, and we recognize that we’re
having our own challenges in keeping up monitoring the safety
of vaccines when so many more are out there, and we haven’t
been able to scale our safety efforts the way we would like to.
But, we do know–and I think the scientists at the
Institute of Medicine have provided great leadership in this,
is that when all of the information that is available has been
looked at by external scientists, not only has the Institute of
Medicine said that vaccines are not associated with autism, but
they have said that there is not an association, that there is
no evidence for an association.
What we say to that is, that’s good, and that’s what we
expected to see, but we have still a lot of work ahead of us to
identify what are the safety aspects of vaccines, in general,
but also what are the causes of autism? We need to continue the
studies that we have in progress, including the study underway
to look at the potential association of environmental toxins
and autism, and the SEED study that’s going on, and not be
I was really struck by Mr. Wright’s statement about the
similarity between autism and AIDS, because I lived through the
very first phases of AIDS, and if you go back to 1981, the
situation we were in with that urgent reality for many, many
people in our country, is we had no idea what caused it, there
was no cure, the people who were affected were driving the
agenda because it was so powerfully affecting their lives and
their health status, and the people that they loved and cared
about. Government was slow to get on board, Government was slow
to scale and provide the kind of scientific leadership, the
door was open for junk science, and for all kinds of theories
to come and go, and ultimately, it was the Congress of the
United States that stepped in and provided the leadership and
the investment to get that whole picture turned around.
Domestically, back in the eighties, and more recently,
internationally with the PEPFAR fund. We don’t want to go
through that cycle again, and I think we really recognize that
this is an urgent threat. While we’re sitting here today in
these 2 hours, at least six children will be diagnosed with
autism in our country, 25,000 children this year. We really do
need to regard this as an urgent threat. So, I just wanted to
put that perspective in the context of your question.
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.