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
Senator Harkin. I wanted to ask you a question, and I’m
glad my panels are still here for Dr. Gerberding, Dr. Insel. In
this party, in Discover magazine, there’s some interesting,
interesting language about different approaches to treating
kids, people with autism. There’s some indication that using
chelation therapy, chelation therapy, which I’m not all that
familiar with, I just kind of halfway know what it is, after
reading this, I looked it up some more, but that it quotes at
least one or two families in here whose, I think they had more
than one child that was autistic that went through this, and
they just, improved immensely. I’m wondering, have you looked
at that? Is there something there?
This, the doctor they quote in this is a Dr. Asco, she’s a
microbiologist, she has a Doctorate in Microbiology and other
things. Now, I’m intrigued by this. Is this part of looking at,
you know, of treating people with autism?
Dr. Insel. One of the ways that, at NIH, we’ve tried to
increase our effort in this whole area is to develop an
intramural program, the first such program for focusing on
autism. It started about a year ago, there are five protocols
that have been rolled out there, and this is to have a kind of
rapid response team that can pick up an idea and run with it
quickly, where we don’t have to go through a very long process
They have, as one of their protocols, they do have a
chelation protocol, that was approved by our Science Committee
in September. It’s actually been held by the Institutional
Review Board, whose members have some additional questions,
they’re going to address it again on May 1. So there have been
no subjects actually entered into the protocol. But the hope is
that will be approved and we can use this intramural program as
the first place to do a controlled trial, a real, randomized
controlled trial to find out whether there’s, a, value in this
approach, and b, what the risk is.
Senator Harkin. Is NCCAM involved in that?
Dr. Insel. I’m sorry.
Senator Harkin. NCCAM?
Dr. Insel. NCCAM is not involved. This is one that NIMH is
taking the lead on.
Senator Harkin. But, you say on May first, you’re going
Dr. Insel. May first the IRB, the Institutional Review
Board, will be reviewing this particular protocol, and we are
hopeful that once it’s approved, we can begin to run with it.
But I must say, they have has some considerable reservations,
the Review Board itself, about the safety of chelation, they’ve
brought in some outside experts who have made them even more
concerned about the potential risks involved, based on some
very recent animal research.
Senator Harkin. Dana Halburtson, from Iowa, told me that
chelation therapy made a big difference with her 8-year old
daughter, Robin. So, again, this is something I don’t
understand completely, but if things are happening out there,
that people are having success with, I would think that NIH
would want to look at it.
Dr. Insel. That’s exactly why we have this intramural group
put together for just that purpose, and it’s not only on this,
but on a number of other ideas that have come up, we’re trying
to move quickly to be able to test them out, but we want to
bring the best science to those questions, and we want to make
sure that we’re doing it in a way that’s safe as well as
Senator Harkin. I know, Dr. Gerberding, you have to go, and
I’m respectful of your time, but again, I just, I want to be
reassured that you’re coordinating with NIH in your, in your
epidemiological studies, that you are coordinating with them,
and that you’re looking at, in your studies, the different
aspects of these vaccinations that we talked about, I mean,
look–I agree that, you know, the vaccinations obviously have
saved a lot of lives. But, one has to begin to wonder, are
there some other side effects that are happening out there that
we don’t know about? Maybe they need to be modified, or
something, I don’t know.
But, I’m just, I want to be reassured that CDC is
coordinating with NIH, in looking at the possible causes, and
maybe environmental factors that might, that might spur on the
genetic predisposition to have autism.
Dr. Gerberding. First of all, we are collaborating across
the Department, in particular with NIH in two lanes that are
relevant to your question. The first has to do with the autism
agenda, and we have the inter-agency approach to doing that.
Separate from that, we have collaborative work going on, on
vaccine safety, that includes NIH, CDC, FDA and the National
Vaccine Program Office, and those are two separate but related
issues, and we are fully engaged. I love to spend NIH’s money.
So, I have a very strong incentive to collaborate with NIH on
the development and research agendas and so forth. I’m
concerned, Senator, because I’ve been long aware of the worries
about the safety of vaccine with respect to autism, but we
really need to get past that, and I think one of the downsides
of focusing on that association is that it’s closed us off to
really looking, broader, at some of the more biologically
So, I want to reassure your daughter that she’s doing the
right thing for your grandchildren, but we also know that no
vaccine is ever going to be 100 percent safe, and we have a
responsibility to investigate safety, not just from this lane,
but from the whole spectrum.
Senator Harkin. I don’t want to continue on this, we can
discuss this at further hearings that we’ll have, Dr.
Gerberding. My point is not that these vaccines aren’t safe.
That’s not my point. My point is, that you add them all up, and
do we really know that 31 of those, given in the first 18
months–within that short span of time–each one of them may be
individually fine, but do we know what the outcomes, what the
impact is, say, on someone who may be genetically predisposed,
to have autism. Then you hit them with 31 of these vaccines,
all combated in a short period of time. What may be–how could
that, perhaps, trigger that genetic predisposition? I don’t
know that you can answer that question.
Dr. Gerberding. Well, I can tell you that it’s not related
to thimerosal. Because the childhood vaccines that your child,
your children are getting do not contain thimerosal as a
Senator Harkin. Except that one.
Dr. Gerberding. If they, some of the flu shot vaccines
still contain thimerosal, they’re trying to take it out, but it
Senator Harkin. Yes.
Dr. Gerberding [continuing]. Across the board, yet.
Senator Harkin. Yes.
Dr. Gerberding. But, it’s a very small amount of
thimerosal, and you know, we’ve been talking about, is the
prevalence of autism increasing in our country? It’s continuing
to either stay the same, or increase, even though we have
removed the thimerosal as a preservative of vaccine for several
years now, so—-
Senator Harkin. But I’m not talking about thimerosal. I’m
just talking about the combined effects of all those vaccines
on a small body that may be genetically predisposed anyway?
That’s what I’m talking about. I’m not talking about
Dr. Gerberding. It’s one of the hypotheses that, I think,
needs to be evaluated in the studies that are going on. I don’t
think it’s the most likely hypothesis, but it certainly should
be included in the risk profile.
Dr. Insel. I think the message that we’d like to convey is
it’s too early to reach premature closure on any of this–we
simply don’t know–I think all of us agree that there must be
something beyond the genetics.
Senator Harkin. There’s got to be, because, Dr. Insel–and
that’s why I asked the question at the beginning–do we know
what’s happening in other countries? Now, there are other
countries that have a pretty decent standard of living in which
they do not give all of these vaccinations in the first year or
two of life. Do we know what the incidents of autism is in
Dr. Insel. We have good prevalence estimates for most of
Western Europe and for Japan. So, we have some comparisons, and
in fact, the United Kingdom is a good example where, in this
case, the thimerosal came out in the early nineties—-
Senator Harkin. I’m not talking about, I’m just talking
about all of those vaccines—-
Dr. Insel [continuing]. But in terms of the early child,
Senator Harkin. Does every child in Great Britain get 31
vaccinations before they’re 18 months?
Dr. Insel. Julie would have a better idea of that.
Dr. Gerberding. No, and their rate of prevalence of autism,
if anything, is higher than it is here.
Senator Harkin. Well, then I’d, that’s what we’d like to
look at. Other countries, too, to see what’s happening. Now,
that would be an interesting epidemiological study. To compare
what we’re doing here to other countries, and to see if there’s
any correlation. Now, you say they have a higher incidence in
Great Britain than we have here.
Dr. Gerberding. When we talk about the incidence or
prevalence of autism, there’s been an issue that hasn’t come up
in this hearing, and I just want to lay a marker down, so we
can talk about it. In order to know how many children have this
disease, we have to have access to their health records, as
well as their education records. As you know, we are stymied in
getting that information. So, in order to compare across
countries, we have to be able to get similar information from
all of the other countries that are in play here, and that’s
really touch–that’s a tough challenge to make those direct
Senator Harkin. You had, earlier, a memorandum of
understanding with the Department of Education.
Dr. Gerberding. That’s right.
Senator Harkin. I understand that they stopped that because
of privacy concerns.
Dr. Gerberding. Well, smart people have looked at the law,
the Family Education Responsibility Privacy Act, and the
Department of Education attorneys have interpreted that law, to
say that our means of having access to children’s educational
records is inconsistent with FERPA, that act.
We think, our responsibility is toward the HIPPA Act, the
Privacy Act, and under the Privacy Act, public health
utilization of data is allowed, so there’s a stalemate here,
and the Department of Health and the Department of Education
are trying to work this out, but right now, it’s really
jeopardizing our ability to understand the true prevalence of
autism in our children, and that’s a big concern to me.
Mr. Wright. We’ve looked at this at Autism Speaks, this is
a very serious issue, because it, obviously so much work has
been done at Government expense at CDC to put in the system of
developing the data that the CDC is publishing, and this whole
system relies upon getting information from school records. If
you lose that, the system–which has taken several years to
build–will collapse, and it would be a lost, you know, tons
of–years will be lost.
My personal conclusion is, that having looked at this,
hard, that it probably is going to take, it is going to take
some congressional action to clarify this. Because it, after
all, it is going to end up being the reading of legislation and
when you have disagreements, you’re going to have different
kinds of positions, and at some point or other, I think, that’s
going to require a congressional, a few lines, in a few bills,
to say that this is the interpretation we intended. Because
this all comes from congressional legislation over prior years.
It probably is absolutely necessary.
Senator Harkin. Well, I would welcome any suggestions you
have that your, or your organization has on legislative
changes, legislation that we need to do to change the language
so that we can get that kind of information from the Department
Mr. Wright. We would be happy to help you in any way we
Senator Harkin. I would apreciate that–that could be very,
very helpful. Or you, or anybody else. I don’t know if I could
call on Federal Government people to do that, or not, I don’t
know if I can ask you to do that.
Well, listen, this has been a very helpful hearing. Again,
I feel good that through NIH that we’re doing more research.
Now, we have ramped it up, but I do want to say this. I
hear every time, I hear people tell me, “Well, you know, the
percentage increase has been so great here or there.” I always
remind people that from zero to one is infinite increase.
Now, I’ve got to know where you start before you tell me
what the percentage increase is. I want to look at the total
dollars, and what is needed and what can be used. That’s why I
ask, Dr. Insel, if we had this increase, could it be used, what
it would be used for, and whether or not.
Now, I do believe that your answer to the questions of
Senator Durbin, I think informs me that, yes, if only 20
percent of the peer-reviewed are being funded, well, that
indicates that, obviously, there are more out there that can be
funded, that are peer-reviewed, obviously. So, that we can
provide that kind of, if we provide that funding for you.
But, I also thank the other panelists for being here. I,
we’ve just got to do something about getting to these kids
earlier. Darn it, we just always patch and fix and then later
on it costs us a thousand times more. If we can get these kids
earlier with the kinds of interventions that we know works. I
mean, we’ve seen what’s happened with families that had the
wherewithal to do that and we’ve seen what’s happened to their
kids and how much better they perform. So, what’s most cost
effective? How do we reach out?
I am anxious to see how the Celeste Foundation will expand
this and we’d like to be helpful in any way we can. But, I
just, my senses tell me that this could really be very helpful
to a lot of families around the country who are somewhat
isolated. I’m thinking of rural areas, obviously in small towns
and communities where they just don’t have the ability to get
that kind of intervention.
So, I’m hopeful that we can take a further look at that. I
would, I would invite any from you, Dr. Favell, any suggestions
that you have for how we might expand the scope of this. You
suggested that in your testimony in response to a question.
Mr. Whitford, I just want to say that, that you mentioned
something about celebrity status. I wrote it down here, about
celebrity. You know, people pay attention to people like you
and, you know, if you’re one of those celebrities that are
dancing with the stars, or running off to the Riviera and all
that, well, people read this, they pay attention. But, if
you’re a celebrity and you’re using your status, and the fact
that you reach a lot of people and you’re using that to focus
people’s attention on good things that they can do to help our
society, to help people live better, to help us do our job
here–I think that’s commendable. I just want to commend you
for that, for doing that, and being out in front on this issue.
It helps a great deal that you would use your status to do that
and I appreciate it very much.
Do we have anything else that any of you want to say for
the record or, anything before I call this to a close, at all?
Dr. Insel. I think all of us would like to thank you for
your interest in this problem. This is the first such hearing
we’ve had on this topic and for everyone here at the panel,
even for somebody who’s not at the panel, but right behind us.
This is a mission, and we really appreciate your interest and
your willingness to support it.
Senator Harkin. Well, I appreciate all of you, and the
organizations that you started or that you’ve been involved in.
Dr. Gerberding, I thank you for your great leadership and Dr.
Mr. Whitford, no Ms. Favell.
Dr. Favell. Yes.
Senator Harkin. Dr. Favell, and all of you.
So, this, I think, this is the first hearing of this
nature, but there will be more. I’m hoping that our budget,
again to echo what Senator Specter said at the very beginning,
I just hope that within our budget confines that we can move
ahead more aggressively on this whole area of autism than we
ever have before. It, it almost is like that AIDS epidemic.
We’ve just got to get to it.
Mr. Wright. Mr. Chairman, this reminds me, almost a little
bit, of the early 1980s. There were two things going on. It was
the AIDS issue was going on and, if you also remember at that
point in time, there was this enormous outcry for cancer
treatment, effective cancer treatments. People were running off
to South America and Mexico and France. It was not like one or
two people. It was, that they were just going down there for
treatments, they were all considered to be too risky—-
Senator Harkin. Yes.
Mr. Wright [continuing]. For the United States. That
brought on a tremendous surge in, in cancer study. Some of it
had to do with AIDS, some of it didn’t. You had, Herceptin came
out of all of that and you had the AIDS vaccine and the AIDS
treatment. You know, it took a period of time, but it was an
I get, I have a sense that this is the same, we’re in the
same timeframe here with the same kinds of issues.
You know, even though Dr. Insel is, I understand exactly
the concerns of safety, but there are thousands of children
that are undergoing that Kelation, one or more of those
Kelation processes today. The parents are all told, they all
know there are risks involved. They’re saying, “Look at the
risks I have at home. I have to make a judgment. Look at the
state of my child. If this has a possibility of making him
better, much better, I’m going to have to take the chance.
Because I just don’t, I don’t believe I can’t.”
So, there is, there is a, it isn’t going to Mexico for
cancer treatment, but it is going, this Kelation activity, you
know, rightly or wrongly, is a little bit like that migration
that took place, you know, years and years ago.
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.