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. Thank you very much. That is very poignant
and heartfelt testimony.
Next, we turn to Dr. Judith Favell, CEO of AdvoServ, a
multi-State network of treatment programs for children and
adults with developmental challenges. Dr. Favell received her
Bachelor’s Degree in Psychology from Western University, and
her Ph.D. from the University of Kansas, out my way. Dr.
Favell, welcome to the committee, please proceed.
STATEMENT OF DR. JUDITH E. FAVELL, CHIEF EXECUTIVE
OFFICER, ADVOSERV, EXECUTIVE DIRECTOR, THE
CELESTE FOUNDATION, MOUNT DORA, FLORIDA
Dr. Favell. Thank you, Mr. Chairman.
I’m also executive director of the Celeste Foundation, and
a member of the Professional Advisory Board for the Autism
Society of America.
During my nearly 40-years’ career as a behavior analyst and
as a psychologist, I have devoted myself to the field of
autism, and developmental disabilities.
Now, during this period, I’ve specialized in the treatment
of behavior problems such as self-injury and aggression that
sometimes associated with these disorders. It is on the
delivery of such treatment services that I’m focusing my
While research on the cause and course of autism continues,
while the incidents and prevalence is tracked, while basic
research on the underlying mechanisms of the disorder is
conducted, we cannot lose sight, as just has been said, of the
1.5 million children and adults today living with autism who
need help today. Today they are seeking services that will
allow them to gain the skills and resolve the behavioral
challenges that will enable them to live and enjoy the fullest
Fortunately, across the last years, major advancements have
been made in the development of educational and behavioral
strategies to teach these skills and to treat these problems.
These methods have been tested across, literally, decades of
scientific research, and confirm that children and adults with
autism can indeed be helped in meaningful and substantial ways.
They can learn to communicate, they can learn to care for
themselves. They can achieve academic and job goals. They can
reciprocate love with friends and family. Likewise, people
experiencing autism can engage in behavioral problems that hurt
themselves, or harm others. In short, effective treatment and
teaching methods designed to help people with autism, notably
those based on learning theory, and applied behavior analysis
are available today, and each day are becoming more effective
with continued research.
So, this picture is a decidedly optimistic one. However,
effective methods of instruction and behavioral treatment are
clearly not enough. To impact the lives of people with autism,
an equally important issue must be addressed, and that is, how
to actually make these services available to people who need
them. There exists not just a gap, but a chasm, between what we
know, and what consumers actually receive.
For example, we know as has been said, that to be optimally
effective, services should begin as early in a child’s life as
possible, and be intensive, that is, encompass as many hours as
possible. Yet, as we hear, families lose precious months–
years–waiting for services, and then too often must settle for
a fraction of what their child needs.
Too often, then, those very services are not available when
and where they are actually needed–at bedtime, during meals,
or in the midst of the meltdown during the weekend. Needs of
people with autism do not conveniently conform to professional
appointments or clinic hours. Support may be needed any time,
day or night.
Further, we know that to be effective, and to produce
positive outcomes, services need to be provided by qualified
caregivers, and yet, despite widespread training of families
and service personnel, despite extensive recruitment of
professionals to the field of autism, there remains a serious
shortfall of qualified professionals to guide the treatment
Thus, though we know a great deal about how to help, we
must increase the accessibility and availability of these
services, to ensure that people with autism actually receive
If we’re truly to ensure that services are available early,
in sufficient amounts, and targeted when and where needed,
traditional solutions, for example, increasing training of
professionals–though important–is simply not sufficient. To
meet the challenge, new service models must be developed.
Our own work at the Celeste Foundation provides an example
of possible new approaches to improving services, both their
availability, and potentially their cost-effectiveness. From
support from the Department of Education and the States within
which we conducted this project, we recently completed a
demonstration project, investigating the use of tele-health
systems to provide professional services directly into homes.
Now, in this model, after a brief period of on-site
training, families were linked to professionals via an
interactive video system that enabled live, real-time teaching,
consultation and support directly into the home when and where
it was needed. Through this tele-health model, families
received help teaching their child, coping with their
challenges, from professionals who might be located hundreds,
even thousands of miles away, ensuring rapid and responsive
assistance, regardless of the distance involved.
This demonstration, utilizing technology developed by the
CNOW Organization, proved to be an extremely effective and
reliable vehicle for aiding families and children with autism.
Children learned and maintained a wide array of skills from
communication, to toilet training to eating green beans.
Parents reported relief from stress, and an improvement of
quality of life as a function of having support available to
them on an ongoing basis, and families and professionals alike
affirmed the effectiveness of this method of facilitating
services, and its ease of use.
The following brief news feature provides a graphic picture
of the benefits of the model involved, of using tele-health
systems for service delivery, and it features Josh Cobbs and
his family, who is with us today.
Work such as this by the Celeste Foundation, demonstrating
the efficiency and effectiveness of utilizing tele-health to
facilitate services exemplifies the type of innovative approach
that we must pursue, if we are truly going to meet the ever-
increasing needs of children, and adults, and their families
with autism, bridging that chasm between knowledge and
practice, moving services from the paper to the people.
I ask all in a position of influence, certainly including
the distinguished members of this committee, to support efforts
to find innovative methods of service delivery for all of those
on the spectrum, including my grandson, Alex, so that they may
receive the very best we have to offer, and lead the brightest
[The statement follows:]
Prepared Statement of Dr. Judith E. Favell
“SEEKING INNOVATIONS IN SERVICE DELIVERY”
Good afternoon, Mr. Chairman and members of this distinguished
committee. My name is Dr. Judith Favell. I am CEO of AdvoServ,
Executive Director of the Celeste Foundation, and a member of the
Professional Advisory Board of the Autism Society of America. I have
devoted my nearly 40-year career as a behavior analyst and psychologist
to the field of autism and developmental disabilities. During this
period I have specialized in the treatment of problem behaviors such as
self-injury and aggression which can be associated with autism. And it
is on the delivery of such treatment that I focus my comments this
While research on the cause and course of autism continues, while
its incidence and prevalence is tracked, while basic research on the
underlying mechanisms of the disorder is conducted, we cannot lose site
of the one and a half million children and adults who are now living
with autism, and who need help now. Today they are seeking services
that will help them gain the skills and resolve the behavioral
challenges that will enable them to enjoy the fullest life possible.
Fortunately, across the last years, major advancements have been
made in developing educational and behavioral methods to teach these
skills and treat these problems. These methods, tested through decades
of scientific research, confirm that children and adults with autism
can be helped in meaningful and substantial ways. They can learn to
communicate, to care for themselves, to achieve academic and job goals,
to reciprocate love with friends and family. Likewise, people
experiencing autism need not engage in behavior problems that hurt
themselves or harm other people. In short, the treatment and teaching
methods designed to help people with autism, notably those based on
learning theory and applied behavior analysis, are available today, and
each day are becoming more effective as a result of ongoing research.
This picture is an optimistic one. However, improving these methods of
instruction and treatment is not enough. To impact the lives of people
with autism, an equally important issue must be addressed: how to
actually make these services available to people who need them.
There exists not just a gap, but a chasm between what we know and
what consumers receive. For example, we know that in order to be
optimally effective, services should begin as early in the child’s life
as possible and be intensive, encompassing as many waking hours as
possible. Yet families lose precious months or years waiting for
services, and then must settle for a fraction of the help that their
child really needs. Too often, these supports are also not available
when and where they are needed, for example at bedtime, during meals or
in the midst of a weekend meltdown. The needs of people with autism do
not conveniently conform to clinic hours or professional appointments.
Support may be needed at any time, day or night.
Further, we know that effective services and positive outcomes for
people with autism depend on qualified caregivers, and yet despite
widespread training of families and service personnel and extensive
recruitment of professionals to the field of autism, there remains a
serious shortage of qualified professionals to guide the treatment
Thus, though we know a great deal about how to help, we must now
increase the accessibility and availability of these services, to
insure people with autism actually receive that help. If we are to
truly meet this ever expanding need, if we are to insure that services
are available early, in sufficient amounts, and targeted when and where
they are most needed, traditional solutions such as increased training
of professionals are simply not enough. To meet the challenge, new
service delivery models must be explored.
Our own work at the Celeste Foundation serves as an example of
possible new approaches to improving the scope and cost-effectiveness
of delivering services to people with autism and their families. With
support from the Department of Education we have recently completed a
demonstration project investigating the use of telehealth systems to
provide professional services directly into homes. In this model, after
a brief phase of on-site training, families were linked to
professionals by an interactive video system that enabled live
training, consultation and support directly into the home when and
where it was needed.
Through this telehealth model, families received help in teaching
their children and coping with their challenges from professionals
located hundreds of miles away, insuring rapid and responsive
assistance. This demonstration, utilizing technology developed by the
Cnow organization proved to be an extremely reliable and effective
vehicle for helping families and their children. Children learned and
maintained skills ranging from communication to toilet training,
parents reported relief from stress due to the availability of support,
and families and professionals alike affirmed the effectiveness and
ease of using the system. This very brief news feature provides a more
graphic picture of the model and benefit of using telehealth to
Work such as this by the Celeste Foundation, demonstrating the
efficiency and effectiveness of utilizing telehealth technology in
service delivery, exemplifies the type of innovative approach we must
pursue if we are to truly meet the ever increasing needs of children
and adults with autism, bridging the current chasm between knowledge
and actual practice, moving services from the paper to the people. I
ask all those in a position of influence, including members of this
distinguished committee, to support efforts to find innovative
solutions to service delivery, so that those living with autism now
will receive the best we have to offer, leading to the brightest
Senator Harkin. Well, thank you very much, as I said in my
opening statement, I hear two pleas from families with autistic
children. One, find a cure, but help us now. So many people
that, they just don’t have the ability to have someone come
visit them every day to tell them what to do. I’ll have more
questions about that later, but I just thought–that’s really
the first time I’ve seen that clip, I’d heard about it, since
it did take place in Iowa, I’d heard about it.
So I’ll have more to ask you about that when we get into
our formal questioning period.
Dr. Favell. Certainly.
Senator Harkin. Mr. Bob Wright, Chairman of the Board of
NBC Universal, the Vice Chairman of the Board and the Executive
Officer of the General Electric Company. Mr. Wright, along with
his wife, Suzanne, co-founded Autism Speaks.
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.