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.
National Institutes of Health
National Institute of Mental Health
STATEMENT OF DR. THOMAS R. INSEL DIRECTOR
Dr. Insel. Thank you, Senator Harkin and Senator Specter.
It’s a real pleasure to be here, and I too would like to
express my gratitude for the support that we’ve gotten from
both of you, and your leadership positions over the years.
As you mentioned, the NIH budget has increased very
significantly, in the case of autism, it’s gone up, actually,
almost five-fold since 1997, and that’s only possible with your
leadership and with your advocacy for bio-medical research.
I think in view of the time and the number of the things
that we want to cover, you already have my written testimony, I
think I will make my comments rather brief.
What I thought I would do is speak to what we actually
know, that we’re confident about at this point in time, and
unfortunately, I can do that in less than 5 minutes, because
it’s a fairly short list.
So, what you have before you are what, I think, are the
four most important points that we can use as a baseline for
the knowledge-base. We can talk more about some of the
specifics and some of the actual research, as we get further
into the hearing.
The first point to make, and it may seem obvious, but it’s
actually a fairly complicated point, is that autism is a
developmental brain disorder. Yes, it involves other organs of
the body, and the gut is one that has been implicated, as you
mentioned Senator Harkin, but it’s important for us to focus on
this as a brain disorder that evolves through development.
The reason I stress that is, because when you think about
developmental brain disorders, it’s not simply what happened,
or where it happened, it’s when it happened that may be really
critical. So, much of what we need to understand is when the
train goes off the tracks in brain development to result in the
kinds of deficits that Dr. Gerberding mentioned–the
difficulties in social reciprocity, the difficulties in
language, the abnormal behaviors that are really key to autism.
It changes the way we think about this a little bit because
it suggests also that there could be multiple causes that if
they occur at the same point in time–and many of us think that
that point may be prenatal–it sets up a trajectory that’s
abnormal, that leads to this very, as you mentioned,
Point number two, you’ll hear from constituents and you’ll
read in the press–is this really genetic? Is this really
environmental? The answer is, it’s both. That, with this
disorder, as with so many of these developmental disorders that
we study now, we’ve–in the scientific world–have gotten
beyond the point of arguing between genes and environment, it’s
like the old nature/nurture debate. The debate now is about how
genes and the environment interact to result in this disorder.
We do know there’s an important genetic component, no
question about that, from what we have from twin studies, but
we also know that that doesn’t explain the entire disorder. And
it certainly wouldn’t explain any potential increase in the
prevalence–or increase, even, in the incidents–over the last
So, lots of interest in what the environmental factors
might be. But, to understand those, we will need to drill down,
and get a very good understanding of who has the genetic risk
to be responsive to that environmental factor. So, much
interest now, in trying to understand the complicated
interaction of those two factors.
Third, this is–as Dr. Gerberding mentioned–important to
have early detection, early interventions.
There are treatments that work–they don’t work for all children. Perhaps 25 to 30 percent of children respond beautifully to behavioral
interventions, but they respond best with early detection and
early intervention, particularly before age 3.
As Dr. Gerberding mentioned, many of these children aren’t even
diagnosed until sometime thereafter.
Finally, current science more and more is telling us that
this is not one illness. This is a group of disorders–much the
way we think about hypertension, much the way we think about
other classes of disorders in medicine. This is one–in the way
that we perhaps once talked about mental retardation–it’s
likely we’re going to find many, many disorders within this
overall rubric. Increasingly, at NIH, we talk about “autisms”
instead of “autism.” That is probably an important
perspective to remember, as we begin to think about causes, and
also about treatments.
Thank you, I look forward to your questions, and I look
forward to the discussion, as well.
[The statement follows:]
Prepared Statement of Dr. Thomas R. Insel
Good afternoon, Senator Harkin and members of the subcommittee, I
am pleased to present a brief review of the research activities and
accomplishments in autism research of the National Institutes of Health
(NIH), an agency of the Department of Health and Human Services (HHS).
I deeply appreciate your continued support for our mission: making
medical discoveries to improve health and save lives. In focusing
today’s hearing on autism we will be discussing an urgent, critical
public health challenge affecting many families.
WHAT IS AUTISM?
Autism is a developmental brain disorder, with onset by 3 years of
age. We now believe that autism includes a large number of disorders
that share deficits in social behavior, abnormal communication, and
repetitive behaviors. Autism in turn is part of a broader continuum of
syndromes called pervasive developmental disorders, now more commonly
known as autism spectrum disorders (ASDs). ASDs range in severity, with
“classic” autism being the most disabling, while others, such as
Asperger’s syndrome, produce milder symptoms. Among children at the
more severe end of this spectrum, mental retardation, seizures, and
self-injurious behaviors are common.
Current Centers for Disease Control and Prevention (CDC) estimates
of the prevalence of ASDs are as high as 6.7 children per 1,000.\1\
“Prevalence” refers to the number of affected individuals at a given
point in time, essentially a snapshot. While prevalence estimates have
increased many-fold since the early 1990s, it is unclear if there also
exists an increase in “incidence”, which measures the number of new
cases across time in the same population. It is unclear whether the
rise in prevalence is due to a rise in incidence, better identification
and awareness of the disorder, or both. A similar increase in
prevalence has been observed in many countries outside of the United
States, and in virtually every study, boys are three to four times as
likely to have ASDs compared to girls.\2\
\1\ Centers for Disease Control and Prevention. Prevalence of
Autism Spectrum Disorders’ Autism and Developmental Disabilities
Monitoring Network, 14 Sites, United States, 2002. Surveillance
Summaries, February 9. MMWR 2007;56 (No. SS-1).
\2\ Fombonne E. Epidemiology of autistic disorder and other
pervasive developmental disorders. J Clin Psychiatry. 2005;66 Suppl
WHAT CAUSES AUTISM?
There is much that remains unknown about the causes of autism.
Scientific research has demonstrated that autism is highly heritable,
as measured by concordance rates in twins. If one identical twin has
autism, there is a 60-91 percent chance the other will also have it.
For fraternal twins, the concordance for autism drops significantly, to
0-10 percent.\3\ While higher concordance in identical twins is not
proof of a genetic cause, approximately 10 percent of autism cases with
a family history of ASDs are associated with genetic mutations.\4\
Recently, a study of people with autism who did not have another family
member also affected found approximately 10 percent associated with
spontaneous genetic mutations.\5\ In addition, autism is frequent in
children with several known genetic neurodevelopmental disorders, such
as Fragile X, Rett Syndrome, or Tuberous Sclerosis Complex.
\3\ Veenstra-VanderWeele, J, Christian, SL, Cook, EH (2004) Autism
as a paradigmatic complex genetic disorder. Annu. Rev. Genomics Hum.
\4\ Barton M, Volkmar F, J Autism Dev Disord., 1998, 28(4):273-8.
\5\ Sebat et al, Strong Association of De Novo Copy Number
Mutations with Autism. Science. 2007 Mar 15; [Epub ahead of print].
Identifying both the environmental and the genetic underpinnings of
autism are critical first steps in bringing the full scientific power
of modern neuroscience to bear on this complex set of disorders. We now
have the genetic sequencing and neuroimaging tools that will permit a
more thorough understanding of the neural substrates of autism. Indeed,
what these scientific tools may tell us is that ASDs are illnesses with
multiple causes and, much like hypertension or cancer, may be treated
and possibly prevented through interventions on multiple fronts.
Importantly, these new scientific approaches will enable us to develop
new diagnostic tests and rational therapies based on the biology of the
illness that will permit us to detect and treat ASDs in much the same
way was as other medical conditions.
HOW IS RESEARCH COMBATING AUTISM?
Combating autism is a collaborative effort, involving several NIH
Institutes, the CDC, and public-private partnerships with advocacy
organizations. NIH has increased funding for autism nearly five-fold
since 1997, to support broad research efforts across genetic,
neuroscience, environmental, and treatment studies. Already, this
investment is bearing important results for better understanding the
brain abnormalities in autism, improved methods for early detection,
and refining interventions for optimizing daily functioning.
NIH continues to fuel this research momentum, most recently with program
announcements encouraging research on the characterization, genetics,
pathophysiology, and treatment of autism and related neurodevelopmental
disorders, as well as requests for applications to collect data and
biomaterials from autistic individuals and their relatives for use in
genomic, basic, translational neuroscience research, and clinical
trials. Here I will note just a few of the recent developments that
offer hope for families struggling with autism.
The recently established NIH National Database for Autism Research
(NDAR) for the first time provides an open-access platform to
facilitate sharing of raw research materials, foster collaborations and
public-private partnerships, and enhance rapid dissemination of
research findings into clinical practice. It is envisioned as a
dynamic, federated system, with improvements and updates being added
routinely to meet the most critical and valuable needs of the research
Early detection is important for improving outcomes. The National
Institute of Child Health and Human Development (NICHD) and the
National Institute on Deafness and Other Communication Disorders
(NIIDCD) continue to partner with Autism Speaks to support the High
Risk/Baby Sibling Research Consortium, an effort to improve early
detection and diagnosis. The Consortium?s primary project is to
identify factors that may influence recurrence rates of ASDs and
broader developmental outcomes in infant siblings of individuals with
ASD. Recruitment of sibling and comparison groups is on target and
database development and data analysis have begun.
Responding to the urgent need for an amplified autism effort, the
National Institute of Mental Health (NIMH) created a new, integrated
autism research program in its intramural laboratories in Bethesda.
Several new clinical trials were launched in 2006 that provide
opportunities for rapid progress in defining the biological and
behavioral characteristics of different subtypes of ASDs and examining
effects of innovative treatments for autism. Intramural researchers are
also collaborating with M.I.N.D. (Medical Investigation of
Neurodevelopmental Disorders) Institute and University of California at
Davis scientists in a pilot of the first large-scale effort to provide
a comprehensive biomedical and behavioral characterization of 1,500
individuals with autism spectrum disorders. The goal of this Autism
Phenome Project is to identify the many subtypes of autism, providing
guides for personalized approaches to treatment.
In addition to these efforts, NIH is striving to identify and
understand environmental influences as potential causes of ASDs. The
National Institute of Environmental Health Sciences (NIEHS), in
partnership with the Environmental Protection Agency (EPA), supports
research through Centers that focus on this important question. One of
the centers, at the University of California at Davis, is conducting
the first large population-based, epidemiologic case-control study of
children with autism. In addition, the National Institute of
Neurological Disorders and Stroke (NINDS) is providing support for a
five-year prospective epidemiological study of a large Norwegian birth
cohort of 75,000 women and their babies. The study, which we expect to
include up to 500 children with ASDs, will examine the contribution of
genetic and environmental factors to the development of autism and
other neurodevelopmental disorders; these factors include infection
history, low birth weight, dietary and environmental exposure to
methyl-mercury, and vaccination history.
Solving the mysteries of autism will require scientists from many
disciplines working together on common problems. To launch a broad,
multidisciplinary attack on autism, NIH recently created an ambitious,
integrated program in order to maximize coordination and cohesion of
NIH-sponsored efforts–the Autism Centers of Excellence (ACE), for
which the first grants will soon be issued. Research projects will
focus on identifying biological and environmental causes and preventive
interventions for autism, as well as improved pharmacological and
behavioral treatments. These Centers will be coordinated through NDAR
and will represent the first integrated, national research effort for
this disorder, with an estimated funding level of $25 million per year.
HOW CAN WE CURE AUTISM?
While there is not a proven biological treatment for the core
symptoms of autism, it is generally agreed that early identification
and behavioral intervention is beneficial. Thirty years of study have
shown the value of employing behavioral methods to enhance social
skills, language acquisition, and nonverbal communication. Such gains
may be evident in individual responses to particular behavioral
techniques in the short term ? in as little as a matter of months.
Yet even in studies where children have received the largest gains,
outcomes are variable, with some making significant progress and others
advancing quite slowly or not at all. A multi-study analysis of the
effect of treatment indicates that behavioral treatments are most
successful when they begin early, are intensive, and highly structured.
Current NIH-funded research includes studies for toddlers that involve
parents in the delivery of interventions at home, immediately after
diagnosis, as opposed to waiting for community or other services to
While medications are useful for some of the accessory symptoms of
autism, such as self-injurious behaviors, we lack medical treatments
for many of the core symptoms, such as social deficits. As we discover
more about the causes and the mechanisms of autism, we expect to
develop a new generation of medications to help children and adults
affected with ASDs. Ultimately, our goal is prevention, based on early
detection of risk, understanding environmental factors that increase or
decrease symptoms, and development of effective interventions before
behavioral and cognitive deficits appear.
The Combating Autism Act of 2006 (Public Law 109-416) was signed
into law on December 19, 2006. Plans are underway to implement the
provisions of this law, which calls for the establishment of a new
Interagency Autism Coordinating Committee (IACC) to coordinate all
efforts within HHS concerning autism spectrum disorders, including the
development of a strategic plan that sets research funding priorities.
Thus, broad collaborative partnerships involving government, private
industry, public and educational institutions, and families of those
with autism will continue to fuel the vital research endeavors that
will reveal the mysteries of this disabling disorder and lead to
prevention and effective treatments.
Autism is a serious, disabling developmental illness that affects
many families in this country. Research is our best hope for making a
difference for these families. Given the complexity of the disorder,
answers will not be as simple or as quick as we wish, but NIH is
committed to bringing the best minds and the best tools to ensure that
we get the correct answers that will lead to the best treatments. I
therefore appreciate the interest of the members of this Subcommittee
on autism research. I look forward to answering your questions.
Senator Harkin. Thank you very much, Dr. Insel, and Dr.
I’ll yield to Senator Specter.
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.