Archived | Autism Treatment & Research Hearing: Questions Submited by Senator Daniel Inouye & Thad Cochran | Circa April 17, 2007 #NotAnAutisticAlly

Questions Submited by Senator Daniel K. Inouye

AUSTISM SPECTRUM DISORDER


Question. I would like to thank the Centers for Disease Control and
Prevention (CDC) for their attention to accurate reporting of autism
spectrum disorders by each State.

The startling rise in the prevalence
of autism spectrum disorders presents many challenges to society. The
uniqueness of Hawaii raises even further challenges when one considers
the remoteness and relative lack of resources available to support
individuals affected by autism spectrum disorders.

How can the Centers
for Disease Control and Prevention (CDC) work with States such as
Hawaii with rural areas and other unique needs to contribute to a
better understanding of autism spectrum disorders?

Answer. Early identification and intervention hold the most promise
for children and families affected by autism spectrum disorders (ASD)
and other developmental disabilities. CDC is working with partners on a
campaign reaching parents, health professionals, and childcare
providers with information on developmental milestones and the early
signs of autism. The campaign–Learn the Signs. Act Early.–is helping
to change perceptions about the importance of identifying developmental
concerns early.

Recent ASD surveillance data show concerns had been raised for more
than half of the children with autism or related disorders prior to
their third birthday, yet children were not diagnosed until well into
their fourth or fifth years. Encouraging early intervention will help
children reach their full potential during the critical window of early
development.

Since the launch of the campaign in October 2004, information about
Learn the Signs. Act Early. has been made available to more than 11
million health care professionals, parents, partners, campaign
champions, and child care providers
. CDC and its partners have
distributed more than 83,000 resource kits targeting the three major
audiences.

CDC continues to work with campaign partners on new ways to reach
parents, child care professionals, and health care providers with the
most up to date information about developmental disabilities–including
ASD. Also, CDC has been working with partners to reach underserved
populations–including minorities and both urban and rural/remote
populations.

For example, campaign staff recently worked with the
Autism Society of America (ASA) on a project to increase dissemination
of campaign materials in underserved communities (including rural
populations) through ASA chapters throughout the country.

The campaign is also in the process of piloting multi-disciplinary
teams of medical professionals, educators, policymakers, and parents to
develop action plans to address obstacles in early identification and
intervention at the State and local level. If this model proves to be
successful, it could be replicated in additional States.

COMBATING AUTISM ACT


Question. A recent study by the Centers for Disease Control and
Prevention (CDC) found that autism spectrum disorders now affect 1 in
150 children in the United States, up more than tenfold from a decade
ago. The Congress responded to this growing public health crisis when
it passed the Combating Autism Act, which authorized more than $900
million over 5 years for the Department of Health and Human Services’
autism activities. How does the NIH and the National Institute of
Mental Health intend to implement the Combating Autism Act’s
recommendations with the budget recommendations that have been sent to
us?

Answer. The NIH has made considerable progress in implementing
provisions of the Combating Autism Act (CAA) of 2006 (Public Law 109-
416). A noteworthy accomplishment was the creation of the Autism
Centers of Excellence (ACE) program, which received $25.5 million in
fiscal year 2007. The ACE program represents a consolidation of two
existing programs, the Studies to Advance Autism Research and Treatment
(STAART) and the Collaborative Programs of Excellence in Autism (CPEA),
to maximize coordination and cohesion of NIH-sponsored ASD research
efforts. The ACE program encompasses research centers and networks
focusing on a broad range of autism-related research, including topics
such as neuroimaging, biomarkers and susceptibility genes,
pharmacotherapy, early intervention, and personal and environmental
risk and protective factors.

INTERAGENCY AUTISM COORDINATING COMMITTEE


Question. How does the National Institute of Mental Health intend
to implement the recommendations of the Combating Autism Act with
respect to the Interagency Autism Coordinating Committee (IACC)
strategic plan?

Answer. The Combating Autism Act (CAA) of 2006 (Public Law 109-416)
requires the Secretary of the Department of Health and Human Services
(HHS) to establish a new Interagency Autism Coordinating Committee
(IACC) with the following responsibilities regarding autism spectrum
disorders (ASD):
–Develop and annually update a summary of advances in ASD research
–Monitor Federal activities with respect to ASD
–Make recommendations to the Secretary regarding any appropriate
changes to Federal activities and public participation in
decisions relating to ASD
–Develop, annually update, and submit to Congress a strategic plan
for the conduct of, and support for, ASD research, including
proposed budgetary requirements

The IACC was chartered under the Federal Advisory Committee Act
(FACA) with the National Institute of Mental Health designated as the
lead for this activity. With a sense of urgency and a spirit of
collaboration, the IACC is developing a strategic plan for ASD research
that focuses on the unique needs of individuals with ASD and their
families. The plan will encourage public and private partners to work
together to rapidly advance our scientific understanding of ASD,
improve health and well-being across the lifespan, and help individuals
with an ASD lead fulfilling lives. In developing the strategic plan,
the IACC assembled expert workgroups to tackle challenging tasks,
identified recent investments and accomplishments in ASD research,
gathered ideas for research priorities from many stakeholders, and
convened four scientific workshops with broad stakeholder
participation. Furthermore, the IACC has decided to amplify its efforts
and accelerate progress by meeting four times a year (a minimum of two
meetings per year are required by the CAA).

The IACC strategic planning workgroup will consider the research
initiatives proposed by the scientific workshops. The IACC strategic
planning workgroup will review public comment and current ASD research
funding to offer recommendations for structuring the strategic plan and
estimating budgetary requirements for components of the plan. The IACC
will consider the recommendations of the strategic planning workgroup
and define the next steps in the strategic planning process, which may
include additional opportunities for stakeholder input through Web-
based town hall meetings or other innovative approaches for outreach.
Once approved by the IACC, a draft strategic plan will be posted on the
IACC website for public comment. Upon completion, the IACC will submit
the strategic plan to the Secretary of HHS.

CARE OF INDIVIDUALS WITH ASD LIVING IN HAWAII


Question. Realizing that the care of individuals with autism
spectrum disorders requires an interagency approach, what suggestions
do you have for those living in Hawaii faced with the unique challenges
of remoteness caring for individuals with autism spectrum disorders?

Answer. NIH does not provide direct patient services, but several
agencies that belong to the IACC address issues concerning care for
individuals with ASD in remote or rural locations, and these agencies
have provided information to NIH on their efforts. For example,
according to the Centers for Medicare & Medicaid Services (CMS), adults
with ASD enrolled in Medicaid receive many home and community-based
services through Hawaii’s section 1915(c) waiver for children and
adults with developmental disabilities and/or mental retardation. The
CMS renewed the waiver in June 2006 for 5 years. The waiver provides
numerous services to about 3,000 people throughout the islands,
including people with ASD, who choose to live in community, rather than
institutional, settings. The operating agency for this waiver is the
State’s Department of Health, supervised by its Department of Human
Services, the State Medicaid Agency. These two entities are charged
with working together to assure that eligible individuals are aware of
and can access waiver services.

The CMS also indicates that the State of Hawaii has included a
“self-directed” option in the waiver that permits individuals to
hire, fire, supervise, and train direct support workers. This option
greatly expands the universe of potential providers, particularly in
rural areas, and may include family members and spouses as providers.
In February 2008, CMS approved an extension of the State’s section 1115
demonstration, which will provide mandatory managed health care
starting in November 2008 to aged, blind, and disabled beneficiaries in
Hawaii. The expansion of the demonstration to include this group, which
likely also includes individuals with ASD, will permit the State to
streamline and better coordinate care and expand provider networks in
remote areas.

In addition to these efforts from CMS, successful models for
providing interagency services within remote and rural settings may be
found among the Systems of Care Sites (including programs in Idaho,
Wyoming, Alaska, Hawaii, Montana, and other States) funded by Substance
Abuse and Mental Health Services Administration (SAMHSA
), another
member of the IACC. These programs emphasize the core principles and
practices of the Systems of Care, focusing on designing services that
are child-centered, family-driven, community-based, and culturally
competent. Some interagency groups have used technology to employ tele-
health, tele-psychiatry, clinical supervision, case consultations, and
interactive videoconferencing. Training of local leaders is another
important element. Some programs employ culturally-specific approaches
developed with community elders that respect native traditions–e.g.,
oral traditions and storytelling, a holistic “heart centered”
approach or understanding that the family is the central unit, rather
than the individual. Cross-agency training has been used in several
locations. Hawaii is conducting innovative work linking communities of
practice at the local and State levels.

Furthermore, SAMHSA’s Children’s Mental Health Program has a grant
in the Kalihi-Palama area in Oahu (urban area) that is focusing on
transition-age youth with emotional or behavioral challenges. This
cross-agency approach uses combined funding to surround the individual
with formal and informal services and supports. The approach is
appropriate in rural areas where there are often shortages of trained
professional providers.
______

Questions Submitted by Senator Thad Cochran

AUTISM DEVELOPMENTAL DISABILITIES PROGRAM


Question. The CDC supports autism surveillance through a
collaborative program, the Autism Developmental Disabilities Program
(ADDP). It is my understanding that the program now has monitoring
sites in 17 States. Could you comment on the CDC’s plan for expanding
this program and project a timeline when all States will benefit from
the data collected through this program?

Answer. The dramatic increase in the number of children diagnosed
and receiving services for autism spectrum disorders (ASD) suggests
that the disorder is more common than was once believed. Understanding
the prevalence of a disorder like autism depends on collecting and
analyzing data from multiple sources. In addition, it is important to
use this method of data collection in multiple locations across the
nation at different points in time. Doing so gives us the best
understanding of ASD rates and trend in different communities in the
United States

In order to do this, CDC currently supports the Autism and
Developmental Disabilities Monitoring (ADDM) Network at 11 sites
(including CDC). Together with the ADDM partners, CDC provides critical
data needed to answer questions about how common ASD are, whether we
are identifying more children with ASD over time, and whether ASD
affect certain groups more than others (i.e. boys are affected more
often than girls). Also, it provides clues into potential causes that
can be investigated further through research.

The goal of the ADDM Network is to provide comparable, population-
based estimates of the prevalence rates of autism and related disorders
in different sites over time. The program has made significant strides
in attaining this goal. During the first phase of the project, as many
as 16 sites (including CDC) have participated in the ADDM Network to
determine the prevalence and characteristics of children with ASDs in
their study areas.

In 2006, CDC awarded funds to 10 ADDM Network sites to allow the
network to develop ASD prevalence estimates for 2006 and 2008. The
sites are currently working on a report from 2004 and another report to
look at changes in ASD prevalence across 3 time periods in 4 sites.

Establishing a national surveillance system for ASD is complex. CDC
will continue to support in-depth, ongoing prevalence tracking in the
current ADDM sites. Opportunities to enhance autism surveillance
efforts in the United States include:


1. Developing and implementing projects that continue to link
prevalence studies with screening and early identification efforts,
2. Supplementing national surveys, and
3. Conducting investigations of ASD occurrence in adults. Doing so
will enhance our understanding of the population characteristics of
ASDs and how they have changed over time.

CENTERS FOR AUTISM AND DEVELOPMENTAL DISABILITIES RESEARCH AND
EPIDEMIOLOGY


Question. The Children’s Health Act of 2000 directed the CDC to
create regional centers of excellence to study autism spectrum
disorders and other developmental disabilities. The Centers for Autism
and Developmental Disabilities Research and Epidemiology (CADDRE)

Network was created in response to this direction. Can you comment on
the most recent research developments resulting from implementation of
this network?

Answer. The search for the causes of autism spectrum disorders
(ASD) is a top priority at CDC. CDC has engaged with partners in the
Centers for Autism and Developmental Disabilities and Research
Epidemiology (CADDRE) network to develop and implement public health
research tools to identify potential causes.

Last year, CDC and CADDRE partners launched the Study to Explore
Early Development (SEED)
. Through this effort, study partners expect to
collect information on 2,700 children with ASD and their parents that
will help answer questions about the characteristics of affected
individuals as well as potential ASD causes. Researchers will explore a
number of priority hypotheses such as the role of infections, genetic,
reproductive and hormonal factors as well as select exposures.

As the largest epidemiologic study of its kind, SEED holds the
potential to be an important complement to the array of other work
occurring at the National Institutes of Health and in academia. CDC
brings a unique public health perspective of studying health issues in
large populations–not just among individuals or families who self-
refer for intervention or study.

LEADING RESEARCH HYPOTHESES ON THE CAUSE OF AUTISM


Question. In recent years, certain vaccines have been suggested as
being linked to autism. Scientific evidence and the most recent
Institute of Medicine report do not support this theory. What are the
other leading hypotheses among the research community of the cause of
autism? How much of current autism funding is being focused on research
to determine the cause of autism-related disorders?

Answer. Most scientists believe that there are multiple causes of
autism spectrum disorders (ASD), resulting in various manifestations of
the core symptoms. Twin studies provide strong evidence that ASD is
highly heritable, but that the disorder involves the interaction of
many genes. NIH-funded research has begun to reveal clues about how
genetic variations affect the risk of developing ASDs. Although some
studies have shown that mutations in individual genes are linked to
only a small percentage of autism cases, new reports suggest that part
of the explanation for ASDs may be due to deletions and duplications of
genetic material. Many of these are spontaneous de novo mutations not
present in the parents. The study indicates that different cases of
autism could be traceable to any of 100 or more genes, alone or in
combination.

Environmental modifiers may also interact with genes to cause ASD
or modify its expression, although such environmental mechanisms have
not yet been identified. The delicate interplay between genetic
susceptibility and immunological and environmental triggers may lead to
differences in the healthy development of brain circuits and brain
function. NIH is committed to meeting this complex challenge,
determining the potential causes of ASDs.

In fiscal year 2007, the NIH spending for autism-related research
totaled approximately $127 million. About 22 percent of the funding
supports grants addressing specific risk factors, including genetics,
environmental mechanisms, and gene-by-environment interactions. An
additional 29 percent supports grants aimed at better understanding the
underlying neurobiology of the disorder, which is critical knowledge in
order to identify hypotheses about additional risk factors for
investigation. Several large initiatives to uncover the underlying
causes of ASD involve joint initiatives and activities sponsored by the
NIH Autism Coordinating Committee (NIH/ACC). The NIH/ACC functions to
synchronize autism research activities funded and conducted by the
various NIH Institutes (NIMH, NICHD, NINDS, NIDCD, and NIEHS).

SUBCOMMITEE RECESS


Senator Harkin. Well, thank you all again very much. It’s
been a very informative and constructive hearing.

The committee will stand in recess to reconvene at 9:30
a.m., Friday, April 20, in room SD-116. At that time we will
hear testimony from the Honorable Richard J. Hodes, M.D.,
Director, National Institute on Aging.

[Whereupon, at 4:16 p.m., Tuesday, April 17, the
subcommittee was recessed, to reconvene at 9:30 a.m., Friday,
April 20.]




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 workIn 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.


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


Fact: Vaccines Do Not Cause Autism.


Explore Autistic History


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