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
SUMMARY STATEMENT OF DR. JULIE L. GERBERDING
Dr. Gerberding. Thank you, it’s good to be back. We really
appreciate the committee’s interest in this topic. Is my
microphone on, can you hear me okay?
Senator Harkin. Yes.
Dr. Gerberding. We are very grateful for all of the support
that the committee has given us, and particularly for our
ability to expand our autism activities significantly.
Senator Harkin, I also know that you walk your talk on this
issue, having had a chance to be with you at the summer
Olympics–the Special Olympics last summer–and knowing your
commitment to developmental disabilities, and disabilities of
all nature. So we really appreciate your championing this
I’d like to share with you the CDC perspective on autism
and the work that we’re doing. It’s important to appreciate
that we recognize that we’re talking about a spectrum of
diseases here, not a single disease. We’re talking about
autism, per se, about pervasive developmental disorders, and
some other conditions that have characteristics in common with
autism–Asperger’s disorder and some other conditions–and
these are diseases that are not diagnosed by a test. They’re
diseases that are diagnosed by observing behaviors, and
watching behaviors change and develop over time. So, there’s a
lot of difficulty in making a distinction between who has what,
and where one of these conditions leaves off and the other one
We know that autism has a tremendous impact on children who
are affected as well as their families and the people who care
for them. The diseases are characterized primarily by
difficulties in forming relationships, and engaging in the kind
of social interactions and communications that enrich life, and
allow people to effectively communicate with one another.
Many of these children also have differences in the way
they respond to stimuli in the environment; the way they learn,
the way they play, and the way they experience their life
The bottom line is, there is no cure for autism now, and
these effects can last a lifetime. We also know that the sooner
we make the diagnosis of autism spectrum disorders, the more
likely children are to benefit from interventions, and so it’s
imperative that we not wait until the full-blown syndrome has
evolved, but that we have early detection and characterization.
Under the Combating Autism Act, CDC has three main
responsibilities. One is, to answer your first question, what
is the prevalence of autism in our communities, and is it
changing over time, and who is at risk, why and when?
Our second priority is research. We are engaged in several
kinds of epidemiologic research that will help us look at a
variety of the hypotheses about causality, and try to make some
determinations about which are the most promising associations,
and what can we learn about cause that could help us lead to
intervention, or even treatment.
Last, and importantly, is our responsibility for awareness.
We need to be able to inform parents and caregivers, as well as
teachers and clinicians about the full spectrum of these
conditions so that earlier diagnosis is possible. We also need
to improve community awareness so that children can live more
comfortably in their communities, and overall public awareness
so that we have the kind of support we need to solve these
Just recently, CDC published information about the rate of
autism in communities around our country. I’m going to focus on
the communities that were reporting data in 2002, we also have
a report from 2000, and there will be an upcoming report on
information from 2004. But the information from 2002, probably
is the largest sample, and so I’m going to focus on that–this
represents about 10 percent of 8-year-old children in our
country, so it’s not everyone, it’s not every community, but
it’s a significant proportion.
What was found in this study is that about 1 in 150
children have autism. Boys, in general, were more likely than
girls, and at least some of the sites showed that white
children were more likely to have autism than non-white
children. So, this is a healthy–a helpful–perspective, but we
can’t yet say anything about trends over time, until these
studies go on for a longer period of time.
We also have initiated a set of studies in a group of sites
called CADRE, Centers for Autism and Development Disabilities
Research and Epidemiology. And this is a study that will allow
us to look at causes. We’re going to compare children who have
these disorders, with children who have other disabilities, and
children who are normal, and look for the frequency of a
variety of factors, including infections, as you mentioned in
the Discover magazine, their parents’ health status, their
family health status, their genes and so on and so forth. We
will be able to tease out of that leading hypothesis about why
are children with autism different from children who have other
conditions, or who don’t have a developmental disability. This
is a project we’re starting this spring, and we will probably
have information from the study over the next couple of years.
The last point I wanted to make very quickly, was the
importance of awareness. We know that at least half of children
with autism have obvious symptoms and signs before they’re age
three, but most children with autism are not diagnosed until
they are 4 or 5 years old, so there’s a gap between when it
should be completely clear what is going on, and the gap when
they come to attention.
So, we initiated this “Learn the Signs, Act Early”
campaign to target parents, health professionals and caregivers
in pre-school and daycare to be able to recognize the child who
is at risk, or who may have early signs. Of course, we’re doing
this with a number of our partners.
This has been an incredibly effective campaign already.
Pediatricians now indicate that they have the tools to be able
to diagnose autism at least two-thirds of the time, parents
understand that this disease can be detected through
developmental screening, and an increasing proportion of
doctors recognize that you can diagnose autism as early as 18
months, and that you need to initiate the screening much
earlier than when the child enters school, which is often when
these conditions are initially detected.
So, we’re going to continue this awareness campaign, we
hope that will create a platform so that the work that we’re
doing on research, on causality and interventions will have a
better chance to really make a difference.
So, I–again, I thank you for your attention, and I look
forward to being able to answer some specific questions that
you mentioned at the beginning of this hearing.
[The statement follows:]
Prepared Statement of Dr. Julie L. Gerberding
Good afternoon, Senator Harkin and distinguished members of the
subcommittee. Thank you for the opportunity to appear before you on
behalf of the Centers for Disease Control and Prevention (CDC), an
agency of the Department of Health and Human Services, to discuss our
agency’s research and prevention activities addressing autism spectrum
disorders. Thank you also for your continued support of CDC’s goals in
support of healthy people throughout all stages of their lives and
facets of living. Good health is essential to a good life, and the
health and well-being of a Nation’s people are essential for its
continued strength and growth.
Today, our Nation and the world are focused on urgent threats such
as pandemic influenza, natural disasters, and terrorism. While these
threats require and deserve our immediate attention, we cannot lose
sight of the pressing realities of public health issues that we face
every day, such as autism and other developmental disabilities. Autism
spectrum disorders include autistic disorder, pervasive developmental
disorder–not otherwise specified (PDD-NOS, including atypical autism),
and Asperger’s syndrome.
Autism spectrum disorders cause considerable impairments in social
interaction and communication that show up early in a child’s life–
before the family celebrates the child’s third birthday–and can
dramatically affect a child’s ability to participate in activities with
loved ones, caregivers, and peers. It is often difficult for a child
with an autism spectrum disorder to communicate and interact with
others, and they can retreat from group activities. An affected child
may also have unusual ways of learning, paying attention, or reacting
to different sensations, and can show unusual behaviors and interests.
There’s no cure at this time, and the effects of these disorders can
last a lifetime. The profound lifelong impact of autism spectrum
disorders, tremendous costs to the affected individuals and their
families, the lack of known causes or cures, and concerns about the
increased rates of diagnosis all make autism spectrum disorders one of
our urgent realities, and a top concern for many families, health
professionals, educators, and local and national organizations.
CDC’s efforts on autism spectrum disorders are led largely by our
National Center on Birth Defects and Developmental Disabilities
(NCBDDD), which was created following the Children’s Health Act of
2000. The Center takes a life-span approach by working to identify and
prevent birth defects and developmental disabilities–including autism
spectrum disorders–and by promoting the health of children and adults
with disabling or potentially disabling conditions. The Center’s top
priorities are improving health and wellness for people with
disabilities, preventing birth defects, and addressing autism and
As reauthorized by the Combating Autism Act of 2006 (Public Law
109-416), NCBDDD’s work in autism spectrum disorders focuses on three
broad areas--understanding rates and trends, advancing public health
research in the search for causes or a possible cure, and improving
early detection and diagnosis so that affected children can begin
receiving intervention as soon as possible. Early intervention that
provides structure, direction, and organization can often help a child
with an autism spectrum disorder. Today, I will provide an update on
the prevalence of autism spectrum disorders, discuss the launch of
CDC’s epidemiologic study of potential causes and correlates, and share
with you some of our successes in promoting early identification of
autism spectrum disorders and other developmental disabilities.
CDC’S WORK IN AUTISM SPECTRUM DISORDERS PREVALENCE
Parents, policy makers, and the public want to better understand
how many people are affected by autism spectrum disorders–and whether
the higher rates are due to better identification or a true increase in
the occurrence. In order to address these questions about rates and
trends, we have focused our efforts on developing prevalence estimates
of autism spectrum disorders in multiple communities over time.
“Prevalence” is the number of existing disease cases in a defined
group of people during a specific time period, and it should be
differentiated from “incidence,” which is the number of new cases for
a given period of time.
Previous efforts to understand the prevalence of these conditions
have varied widely in their methods and findings–making it difficult
to accurately answer critical questions about trends. For example,
studies published before 1985 indicated that the prevalence of autism
and related conditions was 0.4–0.5 per 1,000 children. However, later
studies using updated diagnostic criteria and differing methods from
multiple countries have identified rates ranging from 2.0 to 12.0 per
1,000 children with “best estimate” rates ranging from 2.0 to 6.0 per
1,000 children. Two previous CDC studies specific to U.S. communities
from the mid-1990s found rates of 3.4 and 6.7 per 1,000 children 3-10
years of age and have identified the urgent need for population-based
autism spectrum disorder prevalence monitoring in the United States.
CDC has been monitoring the prevalence of developmental
disabilities since the 1980s and autism spectrum disorders specifically
since 1996. Since 1999, CDC and its partners in 14 States have been
building the Autism and Developmental Disabilities Monitoring (ADDM)
Network to better understand the size and characteristics of the
population of children with autism spectrum disorders, and to provide
consistent and reliable estimates over time.
This network, the only one
of its kind, provides multiple-site, multiple-source, population-based
prevalence data on the number of children with an autism spectrum
disorder. CDC began with six sites (Arizona, Georgia, Maryland, New
Jersey, South Carolina, and West Virginia) in 2000 and in 2002 expanded
to include eight additional sites (Alabama, Arkansas, Colorado,
Missouri, North Carolina, Pennsylvania, Utah, and Wisconsin). Today, we
are continuing our surveillance efforts in 10 of these sites. While
this method does not provide a nationally representative sample, the
network represents the largest effort to monitor prevalence to date,
capturing up to 10 percent of the U.S. population of 8-year-old
children. The network aims to provide accurate information and a strong
basis for bringing autism and developmental disabilities surveillance
to scale, similar to our national efforts in monitoring other urgent
RECENT PREVALENCE ESTIMATES
Together with our partners in the ADDM network, CDC is beginning to
answer one of the critical concerns that I discussed earlier–are rates
of autism spectrum disorders truly increasing?
In February of this year, the CDC released the largest summary of prevalence data from
multiple U.S. communities ever reported. The results showed an average
of 6.7 children out of 1,000 with an autism spectrum disorder in the
six communities assessed in 2000, and an average of 6.6 children out of
1,000 with an autism spectrum disorder in the 14 communities included
in the 2002 study. The average finding of 6.6 and 6.7 per 1,000 eight-
year-olds translates to approximately 1 in 150 children in these
communities. This estimate is consistent with the upper end of
prevalence estimates from previously published studies, with some of
the communities having an estimate higher than those previously
reported in U.S. studies. Reported rates ranged from about 1 in 100 to
1 in 300 children in the 2002 study year.
Six of the participating sites (Arizona, Georgia, Maryland, New
Jersey, South Carolina, and West Virginia) reported data in both 2000
and 2002. Autism spectrum disorder prevalence was similar across the 2
years in four of the six sites. New Jersey’s prevalence estimates are
higher than all other sites in both years, but did not increase
significantly between 2000 and 2002. In West Virginia, the prevalence
estimate is significantly higher in 2002 than in 2000; the prevalence
in Georgia appears to have increased, but not significantly. While the
stability of autism spectrum disorders in four of the six sites is
fairly consistent, the increase in two sites is a concern.
As anticipated, the findings from both study years confirmed a
higher prevalence for boys than girls; this finding is consistent with
past studies. Also, the data show some differences in rates among
children by race or ethnicity. Similar to past reports, prevalence
rates in most sites were similar for white and black children; however,
five of the 14 sites found a higher prevalence among white children
compared to estimates for black children.
In addition to measuring prevalence and demographic differences,
the studies looked at when parents and others first noted signs of
developmental concerns in their children. We know that autism and
related conditions can be diagnosed as early as 18 months. However,
these studies showed that up to 88 percent of children with an autism
spectrum disorder had documented developmental concerns before the age
of three, but half of these were diagnosed between 4\1/2\ and 5\1/2\
years. It is of critical importance to diagnose the child as early as
possible, as early intervention services hold the most promise to
improve the quality of life for these children and their families.
The 2000 and 2002 data points do not constitute a trend, but they
do provide important baseline information on the prevalence of autism
spectrum disorders in multiple areas of the United States. As I
mentioned earlier, we are continuing to work with our network partners
on prevalence estimates for 10 of these same sites for 2004 and 2006.
Since the system has now been established, I expect information for
these new data points will come more quickly, hopefully by the end of
I want to stress that CDC and many of our public and private
partners see these numbers as an important step in understanding autism
spectrum disorders, but more importantly, we recognize that “1 in 150
children” represents the lives of the hundreds of thousands of
children and parents touched by autism and related conditions. Because
of this, we are committed to the search for answers. We are also
working to ensure that parents, health care and child care
professionals, and everyone who cares for children, are able to
recognize the early signs of autism spectrum disorders. In the absence
of a cure, early identification and action hold the most promise for
affected children and families.
We all want to know the causes of autism and related conditions. In
addition to building a public health surveillance network for
developmental disabilities, CDC has also been researching potential
causes. Following the passage of the Children’s Health Act of 2000, CDC
has been working closely with partners in five sites to develop the
Centers for Autism and Developmental Disabilities Research and
Epidemiology, or CADDRE. This multi-state collaborative study will help
to identify factors that may put children at risk for autism spectrum
disorders and other developmental disabilities.
CADDRE is a collaborative effort from which we expect to build a
large pooled data set that will be used to examine priority research
questions. As the largest epidemiologic study of its kind, it holds the
potential to be an important complement to the array of other work
occurring at the National Institutes of Health and in academia. It is
important to note that what CDC brings to autism spectrum disorder
research is a unique perspective of studying health issues in large
populations–not just among individuals or families who self-refer for
intervention or study. To date, CADDRE sites have studied conditions
that often occur with autism spectrum disorders, screening and
management, and associations with immune system and genetic and
Later this spring, CADDRE will begin data collection to study a
number of factors for their potential association with autism spectrum
disorders. Known as the Study to Explore Early Development (SEED), the
factors include: infections or abnormal responses to infections in the
child, mother, or father; genetic factors in the child, mother and
father; mother’s reproductive history; abnormal hormone function in the
child, mother or father; gastrointestinal problems in the child; family
history of medical and developmental problems; select environmental
exposures; behaviors during pregnancy; and parents’ occupations and
other socio-demographic factors. The information will be obtained by
conducting interviews and exams, reviewing medical records, and by
collecting cheek swabs and blood and hair samples.
Several steps in the development of SEED have already been
completed. The protocol has been written, and Institutional Review
Board approval has been obtained. In addition, site-specific advisory
boards have been established to review the study materials and the
study design. Focus groups with parents of children–with and without
developmental disabilities–were conducted to obtain additional
feedback on the study design and feasibility of the study. The
implementation and quality control protocols for all aspects of SEED
field work have been developed and “train-the-trainer” sessions for
field implementation procedures have been completed. Data sharing
protocols and general analysis plans have been developed, and the
CADDRE Information System (web-based subject tracking and data
collection application) has been established. We expect data collection
to take 3 to 4 years, and preliminary results would be available
Study participants will include approximately 3,000 children ages
2-5 years and their parents. All study children will be drawn from the
cohort of children born and currently residing in the study areas of
each CADDRE site in select birth years. Three groups of children will
be selected: children identified with autism spectrum disorders,
children identified with other developmental problems, and a random
sample of all children in each area born in the selected birth years
(most of them typically developing).
LEARN THE SIGNS. ACT EARLY.
Recent studies have shown that developmental disabilities such as
autism spectrum disorders can be diagnosed as early as 18 months;
however, we know that about half of all children are not diagnosed
until much later. Early intervention is a child’s best hope for
learning to communicate and connect with his or her parents and friends
and to be able to learn in a classroom with his or her peers.
CDC, in collaboration with a number of national partners–the American Academy of Pediatrics (AAP), Autism Speaks (Cure Autism Now and the National Alliance for Autism Research, which have both recently merged with Autism Speaks), the Autism Society of America (ASA), First Signs, the Interagency Autism Coordinating Committee (IACC), and the Organization for Autism Research (OAR)–launched a national public
awareness campaign in 2004 called Learn the Signs. Act Early. The
campaign aims to educate parents, health care professionals, and child
care providers about child development, including the early signs of
autism spectrum disorders and other developmental disabilities, and to
encourage developmental screening and intervention. Learn the Signs.
Act Early. builds on familiar experiences of parents, such as
monitoring their children’s physical growth, and expands to social and
emotional milestones such as how children speak, learn, act, and play.
Just as taking a first step is a developmental milestone, so are
smiling, pointing, and waving goodbye.
We know that when developmental delays are not recognized early,
children cannot get the help they need. By increasing the awareness of
autism spectrum disorders and other developmental disabilities and
their signs and symptoms, we can increase early developmental
screening, diagnosis and intervention. This means affected children can
receive the help they need to enhance their development and improve the
quality of life for them and their families.
To date, the campaign has reached more than 11 million health care
professionals, parents, partners, campaign champions, and it is
achieving its first goal–to encourage target audiences to “Learn the
Signs” of autism spectrum disorders and other developmental
disabilities. Outcome data show significant improvements in the
percentage of parents who are aware of early warning signs of
developmental delays, as well as increases in the number of
pediatricians who agree that a child with an autism spectrum disorder
can be diagnosed as early as the age of 18 months. Since the launch of
the campaign, more pediatricians report that they regularly screen
pediatric patients for developmental delays.
In November 2006, Learn the Signs. Act Early launched the childcare
provider segment, targeting the more than 407,000 childcare facilities
in the United States. This new phase will provide free materials to
help childcare providers and preschool teachers educate parents about
child development and autism spectrum disorders.
CDC recognizes that parents want answers. If a child has an autism
spectrum disorder, his or her parents want to know what caused it, the
most effective intervention, and how they can lower their risks if they
plan to have other children. We share their frustration at not having
more answers about the causes and possible cure for the debilitating
symptoms of autism and related conditions. That is why CDC continues to
track the rates of autism spectrum disorders, research possible causes,
and provide accurate information about identifying developmental
concerns and seeking help during a child’s early years of development.
CDC is positioned to bring surveillance, research, awareness and
intervention activities to scale. Building on the encouraging success
in these areas, CDC can continue answering important questions about
prevalence and trends and can bring to bear population-based research
tools in the effort to find answers about potential causes of autism
spectrum disorders. The CDC can encourage the best known timely
interventions for children and their families. Enhancing our programs
would allow us to maintain surveillance in key sites and evaluate
prevalence for different age groups, research potential causes more
aggressively, and answer prevalence and trend questions faster. We can
build on successes in educating the public about early intervention and
education in our Learn the Signs campaign by continuing to develop and
implement strategies to support parents, healthcare professionals and
childcare providers in their efforts to Act Early when concerns are
raised about autism spectrum disorders and other developmental
Thank you for the opportunity to appear here today to discuss this
important public health issue. Thank you also for your continued
interest in, and support of, our activities on autism spectrum
disorders. Together we hope to find answers for this very complex
I appreciate your longstanding support for our vision of healthy
people throughout all stages of their lives and all facets of living. I
will be happy to answer any questions you may have.
Senator Harkin. Thank you, Dr. Gerberding, and I just
mentioned, I am going to change the format since Senator
Specter has to leave, I will go with Dr. Insel, then we will
have some questions for the two of you before we bring the
other people up.
Dr. Gerberding. Thank you.
Senator Harkin. Now, we turn to Dr. Thomas Insel, Director
of the National Institute of Mental Health since September
2002. Dr. Insel received his B.A. and M.D. degrees from Boston
University. Dr. Insel, welcome back to the committee
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.