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Senator Harkin. Thank you very much, Dr. Insel, and Dr.
Gerberding.

I’ll yield to Senator Specter.

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BUDGET ALLOCATIONS

Senator Specter. Well, thank you very much, Mr. Chairman
for accommodating my schedule.

Dr. Insel, the funding for autism has risen, as I noted,
from $27 million in 1998, to a projected budget in 2008 of
$107,870,000–that’s actually about a $400,000 decrease from
last year.

The allocation for autism is substantially less than the
allocation for other major research activities, of the National
Institutes of Health. It is obviously a very serious disorder,
striking 1 children out of 150. With the New Jersey statistics,
which are said to be more representative of the national
average, being 1 child out of 97.

There is total discretion left within the National
Institutes of Health to make the allocation of the $29 billion
which is appropriated by Congress, and that is so we do not,
so-called “politicize” it–we don’t make political decisions,
but leave it up to the scientists. But, I think within the
range of following that very important principle, it is not
inappropriate to raise a question. When you take a look at the
budgets for cancer–and I’m all for cancer research–or the
budgets for heart disease, they range into, close to $5 billion
for cancer. How are the allocations made, to have the $107
million, roughly, which is a very, very small part of the NIH
budget, compared with other research budgets?

Dr. Insel. Well, as you mentioned, much of this is driven
by the science, it’s investigator-initiated for the largest
part of what we’re currently doing.

In the area of autism, unlike many of the other areas that
you mentioned, and many areas in medicine, in general, we do
have an organization in place to begin to think about how best
to deploy the funds that we have. That’s this Inter-agency
Autism Coordinating Committee, that meets twice a year,
includes public members as well as members of several Federal–
—

Senator Specter. How about the basic decision as to how
much goes to the National Cancer Institute, for heart research,
contrasted with $107 million for autism?

Dr. Insel. So, how is the decision for the envelope, the
overall envelope, made for autism, versus other priorities at
NIH?

Senator Specter. Start there.

Dr. Insel. Right. So, I would have to again, give you the
answer that Dr. Zerhouni has given when you’ve asked him a
similar question, that it’s a combination of public health
needs and scientific priorities. This case, the public health–
—

Senator Specter. Public health, what?

Dr. Insel. Public health needs. There, and as you
mentioned, the public health urgency here is obvious, to all of
us. This is a problem which is increasing in everyone’s radar
screen, this is, without question, a much bigger issue for us
than it was 5 years ago—-

Senator Specter. I’ve got to move on to some other
questions because of limited time, but you will be here for the
entire proceeding today, and maybe when you hear some of the
parents, you’ll have a little different view of the urgency of
a greater allocation. That is a judgment which NIH is going to
have to make.

Autism is characterized–as the experts have written–by
three distinctive behavior difficulties, with social
interaction, display problems with verbal and non-verbal
communications, and the exhibition of repetitive behavior, or
narrow obsessive interests.

It is well-known, Dr. Gerberding, and you’ve noted it, that
the early detection of these behavioral disorders can produce
improvements. What should parents do as soon as they observe
some of these behavioral disorders? Your comments here will get
some substantial coverage on C-Span–what advice would you give
to parents who–well, let’s start with something more concrete
than the definition I’ve just given you, which is pretty high-
falluting. What should parents look for, specifically, in lay
terms?

Dr. Gerberding. You know, when you have a child, you’re
used to thinking about, what is its weight, what is his or her
height, what is their head circumference–we’re used to
measuring those physical development milestones. But, there are
behavioral milestones just like that.

By early age, a child ought to be able to make eye contact,
if you play peek-a-boo with a child, they should engage your
attention, they can repeat after you—-

Senator Specter. Okay, eye contact–eye contact is not
made. Give us another easy-to-understand symptom.

Dr. Gerberding. If a child is unable to repeat simple
motions, in other words, if you clap your hands, a young child
ought to be able to repeat your pattern–we have these laid out
by age, just like you would lay out weight by age—-

Senator Specter. Laid out where, are they on a website?

Dr. Gerberding. They are, absolutely, on the CDC website,
http://www.cdc.gov, they are posted prominently in pediatricians’
offices around the country—-

Senator Specter. Can you give us a couple of other simple
illustrations?

Dr. Gerberding. I would be happy to give you a whole little
chart, because I have here—-

Senator Specter. Why don’t you repeat them, so people can
hear you on C-Span?

Dr. Gerberding. Okay, I’d be happy to.

I’m quoting from Newsweek magazine, because I thought they
did a terrific job in one of the articles here of laying them
out.

By 7 months, a normal child ought to be able to turn its
head when its name is called and smile at another person. If
your children is a year old, usually they can wave “bye-bye”
and they can make sounds like “mom” and “dad” or “ma” and
“da” and they can clap when you clap.

At 18 months, a child ought to be able to pretend, like
pretend to talk on a telephone, or to look at objects when you
point to them. By 2 years, a child ought to be able to make
simple sentences with several words in a phrase, and follow
simple instructions, and, I think most importantly, engage
socially with other children, they’ll play—-

Senator Specter. Let me interrupt you, at that point–to
ask you what should a parent do to try to deal with the issue
of the behavioral disorder as soon as it noted?

Dr. Gerberding. If a child is–if a parent is concerned
about their child’s development, the pediatrician or the family
doctor is absolutely the first place to go, and we have really
been pushing information–about 85,000 kits have gone out to
pediatricians around the country. So, parents go in, express
their concern when they’re bringing the child in for well-baby
care, or for the immunization clinic visit, and the most
important thing to the parent is, don’t give up. If the doctor
says, “Oh, no, maybe your child is just a little slower to
catch on,” ask for the doctor to do a screen, and if there’s
any worry, make sure that you get a second opinion, or ask the
child to be seen by someone with more expertise.

Senator Specter. But, what kind of a screening?

Dr. Gerberding. It’s a developmental screening, and
typically the doctor will ask the child to go through some of
the same activities that I just mentioned to you, they’ll
conduct a developmental assessment.

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NEW DIRECTIONS FOR RESEARCH

Senator Specter. One final question, because I don’t want
to go too long, and out of sequence.

Dr. Insel, if more funds were available, suppose we’re able
to increase NIH funding so all the boats would rise, where
would those additional research funds be directed to the kinds
of problems that Dr. Gerberding has described?

Dr. Insel. Well, there are at least three very urgent
problems that we would like to do more of, and do them faster.
One would be very similar to what Dr. Gerberding is describing,
looking at the tools for early detection or early diagnosis,
early intervention–much of that’s going through what we call
our “baby sibs” project, looking at children at risk, and
studying them in a very comprehensive way.

Second area, very important, is to lay out what we call the
“autism phenome” project, the idea of being, the phenome is
like phenomenology, understanding the full spectrum of this
disorder, and all of the components, so that we can get a sense
of, what are the sub-groups? That this is many disorders, if
it’s 10 disorders, what are they? How do we diagnose them? How
do we treat them?

Third area that’s very important, it doesn’t sound so sexy,
perhaps, but is developing a database, which we call the
National Database for Autism Research–we have such a database
that brings the entire research community, as well as,
potentially, families together. It’s a federated database,
which means it will take other databases that are out there and
bring them in for imaging, genetics, and clinical information.

What we’d like to do–we have this now, it went live on
April 2, but it’s still very restricted–we need to grow that,
and we need to make this a sort of electronic meeting place for
both families and scientists from across the country, to try to
get the best information possible about autism.

Senator Specter. Well, in conclusion, let me just make an
observation or two.

Dr. Gerberding, I think the website is fine. If people
write to you, not having access to the website, or not
understanding the website, is CDC in a position to respond to
parents by providing this kind of a graphic illustration of
symptoms and signs to look for, perhaps even a copy of what
appears in Newsweek, under the caption, Babies and Autism?

Dr. Gerberding. We would be happy to get information to
parents and to their doctors, and we can do that by a variety
of means, absolutely.

Senator Specter. Dr. Insel, when you take a look at your
priorities, I know you’ll pay attention to all of them, and I
know you’ll listen carefully to what you hear today.

Senator Harkin and I, and some of the others on the
committee are magnets for a lot of comments from parents,
because they see what the committee has done. It is accurate to
say that I hear a disproportionate comment from parents whose
children have the autism disorder. I hear a lot of people–and
a lot of my friends are dying of cancer–and I know a lot of
people with heart conditions. I’ve seen a fair amount of that
in the mirror. But, on a numerical basis, I hear, just a lot
about autism, and maybe that comes because we advertise on this
Subcommittee with what we do for NIH, but I’d like to see it
get a little more attention.

Senator Harkin, thank you for your courtesy.

Senator Harkin. Thank you, Senator Specter.

Again, just another little change because the clock is
ticking, and I want to hear the testimony of others. I would
ask if you two could maybe, give us some bookends here, Dr.
Insel on one side, Dr. Gerberding, because I have questions for
you, I’m sure other Senators do. But I’d like to ask our second
panel to come up, if I could, at this time.

Marguerite Colston, Dr. Judith Favell, Mr. Bob Wright, and
Mr. Bradley Whitford.

Again, welcome to the committee, and as I said at the
beginning, all of your statements will be made a part of the
record in their entirety, and I’d appreciate it if you’d just
sort of sum up for us, the essence of your statements, and I’ll
go in the order in which I had called people up.

First, we’ll recognize, Marguerite Colston, Communications
Director for the Autism Society of America. More importantly,
she’s a parent of a child with autism, her 6-year old son,
Camden. Welcome to the committee, and please proceed.

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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.

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[Note: Autism is NOT a disease, but a neurodevelopmental difference and disability.]

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Fact: Vaccines Do Not Cause Autism.

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