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 IN OTHER COUNTRIES
Senator Harkin. Well, Dr. Gerberding, obviously, CDC during
your epidemiological studies also, I’m wondering, are they also
looking at some of these environmental factors?
Second, has CDC looked at autism rates in other countries?
Has any research been done to see if countries in Europe and
Asia have different autism prevalence rates? If so, can this
tell us about possible environmental factors that can, or may
contribute to autism?
Dr. Gerberding. The SEED study that I mentioned that’s
going on in six sites initiated this summer is designed to look
for a variety of potential associations and causes of autism,
including exposure to mercury in the environment, in Rhogam,
which is sometimes used to treat mothers with Rh factor
incompatibilities, and a variety of other sources. So, it’s
looking at genes, it’s looking at environment, it’s looking at
the social-behavioral context of the family.
Also looking at occupational exposures in parents that
could potentially create a hazard of exposure in the home for
children. So, a comprehensive look, as a first study.
You might know about the NIH study that will be starting in
Europe in the cohort of Norwegian children–children in The
Netherlands, excuse me—-
Dr. Insel. It’s Norway.
Dr. Gerberding. Norway–to follow a cohort of children
longitudinally to look for prospective evidence of causality,
and then there are studies, for example, in the United Kingdom.
that have been tracking children over time, and looking at
changes in rates.
Finally, a very important study that we don’t have data
from, going on in Italy, where just by coincidence, some
children were enrolled in a study of a whooping cough vaccine,
some of the vaccine was made with thimerosal as a preservative,
and some of it was made without thimerosal as a preservative,
so the study was designed to compare the efficacy of the two
vaccines, we will indirectly be able to determine whether
there’s any difference in autism among the children who did or
did not receive the vaccine that contained the preservative.
So, we have more information coming, but I think we’re
beginning to work in the international context of a community
of investigators all looking for the same kinds of information.
This is a global health issue, not just an American health
Senator Harkin. Well that’s, that is comforting to know,
that you–CDC is looking at other countries, you are
coordinating with other countries to find out about the
prevalence rates, and you’re also looking at the Norway study,
Are you also coordinating with Dr. Insel, and his Institute
Dr. Gerberding. The Norwegian study is an NIH study.
Dr. Insel. But this is an area where there’s a lot of
coordination between all of these Federal agencies, we’re
actually organized around this. This is, very much, an
The Norwegian study, if I can just take a moment, because I
think it’s going to help us over the next couple of years. It
makes no presumption about the cause, it says, “We don’t know
enough, to even have a hypothesis,” but it takes 100,000
children, following them, their moms, from the second trimester
to birth cohort, waits 5 years to see, 400 or so children with
autism, and then it goes back, because samples are collected
all the way from the very first prenatal visit. So, we have
biological samples, we have a tremendous amount of clinical
information. It goes back to ask, what is it, then, that might
have been an exposure for the children who ultimately had
autism, versus those who didn’t?
Senator Harkin. I’m going to yield to my colleague for some
questions now, I have a couple more for Dr. Gerberding and Dr.
But really, in my next round of questions, I want to focus
on you, Dr. Favell, and I want to talk about this intervention
program which holds so much promise, and again, involve you and
Ms. Colston in that, and also Mr. Wright, in terms of your
experiences with your grandson, with Dov, and see how we start
getting to families early on, and providing that kind of help
and support, if we don’t really have an infrastructure for it,
and we don’t–what’s the most cost-effective way of doing it? I
am intrigued by this idea of a tele-health distance-type thing
where you could support someone in a family 24 hours a day, so
I want to focus on that in my next round.
But, with that I would yield to my colleague from Illinois,
ALLOCATION FOR AUTISM
Senator Durbin. Thank you, Mr. Chairman, and thank you to
all of the witnesses. This is the first hearing I’ve attended
on this issue. It isn’t for lack of interest. There are many
things pulling at us, in the position I have in the Senate, and
the work that we have to do in so many other places, but I
wanted to make a point of being here today. Not because we have
any situation in my immediate family, that relates to autism
spectrum disorder, but because of the number of friends that
have been touched by this, and what appears to be the alarming
increase in the diagnosis of autism across America.
My wife and I, fortunately, raised three children, and have
a grandchild without a problem in that regard, but we
frequently speak of this, the incidence of this, and why it
appears to grow as it has, I know there’s a serious question as
to whether this is an indication of incidents or just
identification now, better identification, but I think that
begs the question. I think, the fact is, this is a significant
I thank all of you for testifying, Dr. Gerberding, again we
really appreciate your public service, Dr. Insel, I’ll have a
question for you in a moment, thank you for what you do at NIH,
and for all of you on the panel, starting with Ms. Colston and
Mr. Wright, you raised a question which comes to the office
of a Congressman and Senator more frequently than you can
imagine. People visit us from my State of Illinois or other
places, and say to you, “Senator, can you possibly explain why
they’re spending “x” amount of dollars at the NIH on this
issue?” There are people who represent children with juvenile
diabetes, there are people with parents who have Alzheimer’s,
there are victims of Parkinson’s–you name it. They all come
with the same basic question–how can they possibly rationalize
this amount of money for this issue of such gravity, why isn’t
more money being spent when it comes to research–and you
raised that question. You compare the amount of money being
spent on autism to other significant diseases and disorders,
and I’d like to ask Dr. Insel the question.
Because, as I see the numbers here, in the past 10 years
there’s been a dramatic increase at NIH in terms of research
funding for autism spectrum disorders. In 1998, in the range of
$27 million, by the year 2008, about $108 million, and I’d like
to ask you, if you could, give me some indication of whether or
not this amount is adequate to the task. Do you believe that
you are able to fund the promising research proposals that come
before NIH in the field of autism with this amount of money,
$108 million each year?
Dr. Insel. Overall, what we call our success rate, that is
the possibility that anyone in any area will get funded when
they come to NIH is roughly 20 percent. There’s a 1 in 5 chance
that you’re going to get funded.
Senator Harkin. That’s a peer-reviewed.
Dr. Insel. Peer-reviewed grant, that’s right. But,
virtually all of our, other than contracts, virtually
everything that we fund is through peer review. That’s a system
that provides the quality control that we need.
Is autism–how does that stack up against other areas?
Well, obviously, we’re doing better there, because it’s growing
faster. Overall, the budget’s grown, a little more than double
since 1997, this area has grown almost by five-fold, but
remember, we were starting at a very, very low baseline. So, we
still have a ways to go in this area.
I’m not proud to tell you that I can give you the full sum
of our knowledge in less than 4 minutes, when we talk about
autism. This is an area where we have many more questions than
answers. We have a long way to go to fill in those answers. The
good news is we have some of the tools now, that were not
available 5 years ago. So, we should be able to make progress
faster, going forward, than we have in this past period.
Senator Durbin. So, does your response suggest that 4 out
of 5 of these peer-reviewed clinical trials that you think are
worthy of investment each year, have to be denied?
Dr. Insel. Well, this isn’t to say that all of the other
four would be worthy of investment. We would like to be able to
fund, always, more than we can do, that’s the reality, it’s the
same reality we all experience with our pocketbooks, we can’t
go as far as we’d like.
However, in the area of autism, we’ve made that a priority,
and we’ve tried to reach as far as we can.
The problem isn’t only that we may not have enough funding
to do everything we’d like to do, but here also, we haven’t
until recently, had the capacity, we haven’t had the population
of outstanding scientists out there really pushing this agenda.
That’s taken time to build. I think it’s there now, and I think
part of it has been through the help that we’ve gotten from
this subcommittee, that’s really helped us to grow overall, and
it’s also helped us to stay focused on areas of public health
need, but there has to be the people out there asking the right
questions for us to spend the money on.
Senator Durbin. In order for those people to commit their
lives and careers to that research, they have to feel that
funding for research is somewhat reliable, and predictable in
the years to come, is that not true?
Dr. Insel. That is absolutely the case, and that is, of
course, right now a particularly sensitive question. Because
there are many people who are asking whether they can have a
career in science, because they find that funding at this 20
percent success rate is a high-risk game.
Senator Durbin. I think we made some dramatic progress, and
I want to thank my colleague from Iowa and Senator Specter from
Pennsylvania for all their leadership in that regard, but I’m
afraid that we have reached a part where we’re flat-lining
stagnant here, in terms of the growth in medical research at
NIH, and I hope we can change that. We are spending a lot of
money in other places in the world, but I think most families
would agree that this is a high priority for us to spend.
Mr. Whitford, you talk about, and I thank you, and Mr.
Wright for being here, in your public capacities to engage in
this issue–but you talk about the frustration of your friends,
that you know, who find it difficult to qualify for help in
Government programs without making some radical personal
decisions about their finances and their marital status and
things of that nature.
I think that is the part that Ms. Colston was raising
earlier, too, is how do we sustain the families that are doing
their level best to help their child, suffering from autism? I
really believe that that is something that we overlook.
Research is the first place to turn, but beyond that, it’s
support for these families with children in this circumstance.
One of the things that I’ve thought about is to view the
role of caregivers in America as a special group that receive
special consideration. Whether we’re talking about daycare
centers or personal attendants for the disabled, there is at
least one State that gives all caregivers automatic health
insurance, provided by the State. It’s the State of Rhode
Island, provides Medicaid for caregivers. It strikes me that in
many instances, families with children with autism would be
able better to afford the services of caregivers if they could
offer health insurance as part of the bargain, and we can help
them do that.
So, I’m hoping we can find some innovative ways to expand
the spectrum of services for children who are going to need
much more, but I thank you for raising that.
Mr. Whitford. I don’t think it’s possible to overstate the
impact that I–actually my, I, subsequent to my involvement
with CAN, my godson was diagnosed, and it was a different
situation, they live in a one-bedroom apartment, they do not
have the funds that they need, and it is absolutely devastating
to a family, it is–depending on where you are in the spectrum,
you know, these kids, it’s 24 hours. There is a tremendous
amount of anxiety wondering, where on the spectrum the kid will
end up. There is, it’s an absolutely full-time job, the career
goes out the window, the marriage goes out the window, and
you’re juggling therapies in a desperate race to see if your
kid can live an independent life. So, it sounds like a great
Senator Durbin. I hope we can interest some people in it.
Ms. Colston, I’ll ask you the last question I have, and
turn it back to the chairman on this, but your son, Camden is
in public schools now?
Mrs. Colston. He is, he’s in Montgomery County, Maryland.
Senator Durbin. How is that working out?
Mrs. Colston. It’s great. I live–I’m lucky, again, I live
in Montgomery County, Maryland which is the top 10 counties in
the Nation in the way they handle disabilities, and the IDEA
Act. It’s great–he gets picked up at my door on the school
bus, he goes to school, he gets 10 hours a week of intensive
therapy, he is mainstreamed, or included if you will–not
mainstreamed, he’s included with his typical peers for a third
of the day, and in a contained classroom for two-thirds of the
day. I’ve seen just remarkable improvement in his socialization
and cognition. So, I’m very grateful for that.
Senator Durbin. Very fortunate to be in Montgomery County,
Mrs. Colston. That’s right, I’d say to people, “I love
D.C., I’d love to move there, but I can’t.”
Senator Durbin. That just tells the story.
Mrs. Colston. Yeah, right.
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.