Archived | Autism Treatment & Research Hearing: Statement of Bob Wright Co-Founder of Autism Speaks | Circa April 17, 2007 #NotAnAutisticAlly


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

View Video : https://www.c-span.org/video/?197628-1/autism-treatment-research


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.

Mr. Wright is a graduate of the College of the Holy Cross,
received his law degree from the University of Virginia School
of Law.

Mr. Wright, again, I thank you for your leadership in this
area, and for co-founding Autism Speaks, and again, your
statement will be made a part of the record in its entirety,
and please proceed as you desire.


STATEMENT OF ROBERT C. WRIGHT, CO-FOUNDER, AUTISM
SPEAKS
, FAIRFIELD, CONNECTICUT


Mr. Wright. Mr. Chairman, thank you very much for having us
here.

Our grandson was diagnosed in 2004, at just 2 years and 3
months, and we were helpless. He was potty-trained, he spoke,
he was very active, he was apparently a very normally-
developing child, and everything slipped away from him. We were
helpless as we watched him slip away into this cruel embrace of
a disorder. My wife, Suzanne, likes to call it kidnapping, as
if someone had taken Christian who was meant to live, yet he
was taken away, and we got nothing back, and there’s no way to
restore him back to his family–he’s a little prisoner.

Since that diagnosis, we embarked on a mission to learn as
much as we could about autism. We received, Christian received
the best therapies and treatments that were available, but we
discovered, however, that there are scarce resources for
parents dealing with autism, and how thin the knowledge base is
on the whole issue.

We had so many questions, and instead of answers, we were
confronted with a bewildering array of theories and guesses.

Here’s what we do know about autism. The numbers that Dr.
Gerberding
talked about, 1 in 150 children in the United
States, 1 in 94 boys, that’s the ratio. A decade ago, the
experts estimated the prevalence in autism to be 1 in 2,500.

This year, more children will be diagnosed with autism than
with AIDS, diabetes, and cancer combined. Autism costs the
society, American society, approximately $35 billion in direct
and indirect expenses each year, according to a Harvard School
of Public Health study. Caring for a child with autism can cost
over $3 million over a person’s lifetime, those are the
estimates.

Frankly, Mr. Chairman, we were shocked that a disorder this
prevalent commands so little in terms of resources devoted to
research and treatment when compared to other, less common,
disorders.

For example, leukemia affects 1 in 25,000 people, children,
but receives $300-plus million a year of support from the NIH.
Pediatric AIDS affects 1 in 8,000, and it’s about $400 million
a year. And autism affects 1 in 150, and the funding level is
approximately $100 million.

To help close this gap, we launched Autism Speaks in
February of 2005 to help raise the funds that would quicken the
pace of research
. We worked–and together we worked with
literally thousands of families affected by autism, to
introduce, and pass, and have the President sign the Combating
Autism Act.


This is an historic act, it is considered by some to be the
most comprehensive piece of single-disease legislation ever
passed in the U.S. Congress. It authorizes $920 million over 5
years for research and autism surveillance, awareness, early
identification, and authorizes a 50 percent increase in the
Department of Health and Human Services spending on autism.

For fiscal year 2008, the Combating Autism Act authorizes a
spending level of a total of $168,000, to the Health and Human
Services Secretary for autism activities, and within that
total, provides for three, distinct, autism-specific items.

Sixteen and a half million dollars to the Centers for Disease
Control and Prevention
, to conduct the developmental disability
surveillance and research program, which Dr. Gerberding
outlined, the $37 million for Health Resources and Services
Administration to carry out an autism education, early
detection, intervention program; and $144 million for NIH
funded research.

Mr. Chairman, let me elaborate quickly on each of these.
First, for the NIH, the funding increases are incremental, in
total. Most important, the act directs the NIH to spend those
dollars more wisely, according to a strategic research plan,
devised by an Inter-Agency Autism Coordinating Committee with
consumers and advocates comprising a third of its membership.
The act also directs the NIH to ramp up its investment in
research, and potential environmental causes of autism.

With these new funds, CDC can expand its awareness and
intervention activities, to reach more parents, health
professionals, et cetera. Previous investment in the CDC has
produced the largest-ever surveillance study, which established
a baseline to measure autism prevalence trends in the United
States.

These studied need to continue so that we can measure the
true changes in autism prevalence over time. They probably
aren’t enough, by a long shot, but you know, that’s the best we
have right now.

It is also critical that funds be appropriated to the CDC
to fund the Seed Study, which is the first epidemiological
study to search for environmental exposure, and exposure gene
immune interactions.


The Combating Autism Act also creates new and innovative
State-based programs in autism education, detection, and early
intervention. Early intervention, as we’ve heard here, can lead
to improvements in speech relating to learning.

One of the things I would offer as a comment here, that–
this is something we do know, that a child that does early
intervention, is diagnosed before 3 years old, and is fortunate
enough to have active therapy such as behavioral, occupational,
or speech therapy, has a 50 percent chance of being able to
matriculate to a public school. If you don’t do that, you have
almost no chance.

What we also know, is that children in the minority
community, the average age of diagnosis is 7 years old. So, if
you put those two together, there’s almost no chance those
children are going to be able to matriculate through a public
school system. The two largest minorities are African-Americans
and Hispanics, which total almost 80 million, in total. A third
of our population is in the minority community. So, I mean,
this whole thing, the cost involved, the issues involved, it’s
critically important.

Mr. Chairman, the funding increases recommended by the
Combating Autism Act are relatively modest, at only $25 million
more than the Congressional Budget Office’s baseline estimates
for HHS’s autism activities. But the impact this subcommittee
would have by not just matching those increases, but by
dictating how those funds would be spent, would be a start.

By doing so, Mr. Chairman, this subcommittee would take a
giant step toward fulfilling the promise offered to hundreds of
thousands of children and their families when Congress passed
the Combating Autism Act. The public health crisis posed by
autism requires an extraordinary response. With every new child
diagnosed with autism, we’re looking at another $3 million bill
over their lifetime–it isn’t business-as-usual. I know you
understand that, I know everybody sees this.

But we see a response needed that is akin to what happened
with AIDS–a crisis in the 1990’s. With line-item
appropriations for autism intervention, surveillance and
research tied to a strategic plan. This is a leg-up, it’s late-
coming to recognize the prevalence, if we don’t do something
special, the funding won’t rise at a fast enough level to deal
with that.

I’m fully aware that the autism community is asking this
subcommittee to do something which many claim to oppose, in
principle, namely to appropriate by disease. In fact, Congress
already took that extraordinary step when it passed the
Combating Autism Act. The act–by authorizing the creation of
autism-specific line-item appropriations–recognized that
autism deserves, no, requires, this approach, because of the
combination of autisms high prevalence, coupled with the
historical neglect exemplified by the numbers you heard today
on NIH and the inability to prioritize autism within its
portfolio, at least at this juncture.

PREPARED STATEMENT

Last year, the House and the Senate unanimously passed the
Combating Autism Act and we urge you to make the funding part
of the implementation of the act, as it’s written, equally
bipartisan, and universally a supported effort.
Thank you very much, Mr. Chairman.

[The statement follows:]

Prepared Statement of Robert C. Wright

Good afternoon, Mr. Chairman. I am Bob Wright, chairman of the
board of NBC/Universal and vice chairman of the board of the General
Electric Company.
But I appear before you today in another capacity, as
co-founder of Autism Speaks and as a grandfather of child with autism.

Our grandson, Christian, was diagnosed with autism in 2004.
Helpless, we watched him slip away into the cruel embrace of this
disorder. My wife, Suzanne, likens it to a kidnapping, as if someone
had taken away the life Christian was meant to live. We all want
nothing more than to have him back where he belongs, restored to his
family.

Since the diagnosis, our family has been on a mission to learn all
we could about autism, and to help ensure our grandchild received the
best therapy and treatments available. What we discovered, however, was
just how scarce the resources are for parents dealing with autism, and
how thin the knowledge. We had so many questions, and instead of
answers, we confronted a bewildering array of theories and guesses.

Here’s what we do know about autism.
–According to a recent CDC report, autism is now diagnosed in 1 in
150 children in the United States, and a shocking 1 in 94 boys.
–A decade ago, experts estimated the prevalence of autism to be 1 in
2,500.
–This year more children will be diagnosed with autism than with
AIDS, diabetes and cancer combined.
–Autism costs society the American economy more than $35 billion in
direct and indirect expenses each year, according to a Harvard
School of Public Health study. And caring for a child with
autism can cost over $3 million over the person’s lifetime.

Frankly, Mr. Chairman, we were shocked that a disorder as prevalent
as autism commands so little in terms of resources devoted to research
and treatment, when compared to other, less common disorders.
–For example, leukemia affects 1 in 25,000 people but receives
research funding of $310 million per year;
–Pediatric AIDS affects 1 in 8,000 children; its funding, $394
million per year; and
–Then there’s autism, which affects 1 in 150 children and yet NIH
research funding is a paltry $108 million.

To help close this gap, we launched Autism Speaks in February 2005
to help raise the funds that will quicken the pace of research. Mr.
Chairman, we also worked together with thousands of families affected
by autism to introduce, pass and have the President sign the Combating
Autism Act.
This historic act is considered by some to be the most
comprehensive piece of single-disease legislation ever passed by the
U.S. Congress. It authorizes appropriations of $920 million over 5
years for autism research, surveillance, awareness and early
identification, authorizing a 50 percent increase in the Department of
Health and Human Service’s spending on autism.

For fiscal 2008, the Combating Autism Act authorizes a total of
$168 million to the HHS Secretary for autism activities and within that
total provides for three distinct autism-specific line items–
–$16.5 million for the Centers for Disease Control and Prevention to
conduct its Developmental Disabilities Surveillance and
Research program;
–$37 million for Health Resources and Services Administration to
carry out an Autism Education, Early Detection, and
Intervention program;
and
–$114.5 million for NIH-funded autism research.

Mr. Chairman, let me elaborate on each of these items.

For the NIH, the funding increases are incremental. Most important,
the Act directs NIH to spend those dollars more wisely, according to a
Strategic Research Plan devised by an Interagency Autism Coordinating
Committee,
with consumers and advocates comprising a third of its
membership. The act also directs NIH to ramp up its investment in
research into potential environmental causes of autism.

With these new funds CDC can expand its awareness and intervention
activities, to reach new parents, health care professionals and health
care providers. Previous investment in CDC has produced the largest-
ever surveillance study which established a baseline to measure autism
prevalence trends in the United States. These studies need to continue
so that we can measure the true changes in autism prevalence over time.
It is also critical that funds be appropriated to CDC to fully fund the
SEED study, which is the first epidemiological study to search for
environmental exposures and exposure-gene-immune interactions.

The Combating Autism Act also creates new and innovative state-
based programs in autism education, detection and early intervention.
Early intervention can lead to profound improvements in speech,
relating and learning. Right now, we consider getting a diagnosis and
intervention for a 3-year-old child a success. But we can do better.
Through new diagnostic instruments we can reduce the age of diagnosis
to within the first year of life. Service provision must keep pace.

Mr. Chairman, the funding increases recommended by the Combating
Autism Act
are relatively modest at only $25 million more than the
Congressional Budget Office’s baseline estimates for HHS’s autism
activities. But the impact this subcommittee would have by not just
matching those increases but dictating how those funds would be spent
would be historic. And by doing so, Mr. Chairman, this subcommittee
would take a giant step toward fulfilling the promise offered to
hundreds of thousands of children and their families when Congress
passed the Combating Autism Act.

The public health crisis posed by autism requires an extraordinary
response. With every new child diagnosed with autism costing an
estimated $3 million over his or her lifetime, we cannot afford to rely
on standard, “business as usual” practices. The autism crisis demands
a focused, coordinated, and accountable response by our public health
agencies, similar to the Federal response to the AIDS crisis in the
1990s, with line-item appropriations for autism intervention,
surveillance and research tied to a strategic plan.

I am fully aware that the autism community is asking this
subcommittee to do something which many claim to oppose in principal–
namely, to appropriate by disease. In fact, Congress already took that
extraordinary step when it passed the Combating Autism Act. That act,
by authorizing the creation of autism-specific line-item
appropriations, recognized that autism deserves, no, requires, this
approach because of the combination of autism’s high prevalence,
coupled with historical neglect exemplified by the failure of the NIH
to appropriately prioritize autism within its portfolio.

Last year, the House and the Senate unanimously passed the
Combating Autism Act. We urge you to make funding the implementation of
the CAA an equally bipartisan and universally supported effort.

Thank you, Mr. Chairman.


Senator Harkin. Thank you very much for your statement, and
thank you for taking your time to be here today, and for all of
your involvement in this issue.

Next, we’ll turn to Mr. Bradley Whitford, well-known
Broadway and TV actor, who is probably best-known for his role,
of course, on “West Wing”.


* The “autism community” is not the Autistic Community. The autism community was created by non-Autistic led organizations and includes mostly parents, professionals and their friends. Most of what the world knows about autism is sourced from the non-Autistic “autism community.”



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


Explore Autistic History


2 Replies to “Archived | Autism Treatment & Research Hearing: Statement of Bob Wright Co-Founder of Autism Speaks | Circa April 17, 2007 #NotAnAutisticAlly”

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