INTRODUCTION

What is Autism?
Autism spectrum disorder (ASD) refers to a group of complex neurodevelopment
disorders characterized by repetitive and characteristic patterns of behavior and
difficulties with social communication and interaction. The symptoms are present from
early childhood and affect daily functioning.
-National Institute of Neurological Disorders and Strokes (NINDS)
ASDs affect one out of every 68 children in the U.S. and they occur more often among boys
than girls.

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-WebMD

What is the spectrum and what does that mean?

The term spectrum refers to the wide range of symptoms, skills, and levels of disability
in functioning that can occur in people with ASD. Some children and adults with ASD
are fully able to perform all activities of daily living while others require substantial
support to perform basic activities, such as tying their shoes or asking a questions.
(NINDS)
Until recently, the types of ASD have been determined by guidelines in the diagnostic
manual (Diagnostic and Statistical Manuel of Mental Disorders, Fifth Edition (DSM - IV)
of the American Psychiatric Association. According to the CDC, the three main types of
ASD are: Asperger's syndrome, Pervasive developmental disorder, not otherwise
specified (PDD-NOS), and Autistic disorder. The DSM -IV also included two rare but

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severe autistic-like conditions -- Rett syndrome and childhood disintegrative disorder.

(WebMD)
What does ASD do to a person?
Many people with ASD find social interactions difficult. The nature of typical
communication and interaction is often particularly challenging. Children with ASD may
fail to respond to their names, avoid eye contact with other people, and only interact
with others to achieve specific goals, speaking minimally to accomplish that. Often
children with ASD do not understand how to play or engage with other children and may
prefer to be alone, or rather play next to a child rather than with them. People with ASD
may find it difficult to understand other peoples feelings or talk about their own feelings.
People with ASD may have very different verbal abilities ranging from no speech at all
to speech that is fluent, but awkward and inappropriate. Some children with ASD may
have delayed speech and language skills, may repeat phrases, and may give unrelated
answers to questions, such as answering every question with yes or no. In addition,
people with ASD can have a hard time using and understanding non-verbal cues such
as gestures, body language, or tone of voice. People with ASD may also speak in flat,
robot-like or a sing-song voice about a narrow range of favorite topics, with little regard
for the interests of the person to whom they are speaking as they dont think about
anything but their topic at that moment in time. Many children with ASD engage in
repetitive movements or unusual behaviors such as flapping their arms, rocking from
side to side, or twirling. They may become preoccupied with parts of objects like the
wheels on a toy truck. Children may also become obsessively interested in a particular
topic such as dinosaurs or memorizing the dates movies come out. Many people with

ASD seem to thrive so much on routine that changes to the daily patterns of life, like an
unexpected stop on the way home from school, can be very stressful. Some children
may even get upset and have emotional outbursts, especially when placed in a new or
overly stimulating environment. (NINDS)
Why Does Autism Need Reasearch Funding?
Every day, scientists are unraveling the complexities of autism. Every day, researchers and
scientists are asking the right questions and discovering a broad-spectrum of causes,
treatments and cures for autism. We fund autism research because only through the most

brilliant scientific minds will we continue to unlock the answers to autism. Although scientists
are constantly developing and achieving breakthroughs, we face the reality that there isnt
enough funding to keep pace with the growing need. This work is complex and often takes
years of research and in many cases a large investment. (Autism Science Foundation)
Why Does Autism Need Funding for Services?
The organization Autism Speaks estimates that it takes around $60,000 a year to support
someone with an ASD. Such costs typically include an ongoing mix of special education

programs, medical care and lost wages. After all, many parents of autistic children reduce their
work hours, or even quit their jobs altogether, to help their child full-time. The costs are so
prohibitive that many affected families actually pick up and move to states that offer a superior
array of therapeutic services. (Time)

WHERE DOES THE FUNDINGIT COME FROM

Government Funding: What the Government Wants Us to See

Recently President Obama signed legislation renewing the landmark Combating Autism
Act, which assures continued federal support for critical autism research, services and
treatment for the next three years. The Combating Autism Reauthorization Act (CARA),
originally sponsored by Chris Smith and Mike Doyle in the House of Representatives
and Robert Menendez and Mike Enzi in the Senate, would not have passed without the
tireless efforts of advocates throughout the autism community. CARA passed
unanimously in both the House and Senate despite an uncertain fiscal environment.
The new law continues the federal governments commitment to autism research,
services and treatment at current levels, authorizing $693 million over the next three
years. The original act provided nearly $945 million over five years. Since its passage in
2006, significant advances have been made in determining potential causes for autism
as well as promising new early intervention behavioral treatments. By signing CARA
into law, President Obama has ensured the federal governments commitment to autism
so that crucial research can continue unimpeded for the next three years. (Leonard)
Government Organizations that have helped with funding dealing with autism:

HHS- Human and Health Services

o NIH- National Institute of Health

OARC- Office of Autism Research Coordination

IACC- Interagency Autism Coordinating Committee

CDC- Center for Disease Control

DOD- Department of Defense

ACL- Administration for Community Living

DOE- Department of Education

HRSA- Health Resources and Services Administration

-Info from GAO testimony

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A Graph of the Amount of Funding Given For Research and

Treatment of Issues Affecting US Children
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What I See

Many different gGovernment agencies put forth money to help out in autism funding. This fact
alone is very important to me. However autism is still a very low priority in the life of the

government. It often gets pushed aside for more urgent matters in the eyes of the public and
so while money does get funneled in, its not nearly the same amount as money for the funding
of Leukemia, Muscle Dystrophy, AIDS, and Juvenile Diabetes. It is close to half of what the

seconded lowest amount is, however it autism affects a larger percentage of our population.
one1 in 68 kids are diagnosed with autism, while one1 in 100,000 have muscle dystrophy and
that receives over double the amount of funding. The total National Institute of Health funding
budget in 2011 was $30.5 billion. Of this, only $169 million goes directly to autism and related

conditions research. This represents 0.6% of the total NIH funding (TACA). The government
tends to focus on things that they know they can solve and fix immediately once a cure is found
rather than taking the time and money to look into something that cant be cured.

WHERE DOES IT GO
Research
According to If you look at the last few years, Autism Speaks, one of the largest
organizations supporting autism in the US, spends 35-45% of funding on research.
According toAnd if you look at the last few years of the National Institute of Health
funding, they only gives funding to projects that involve research. Research when it
comes to autism is crazy abnormally high as no one is 100% certain what causes
autism and where it comes from. Scientists have managed to figure out that it is at least
partially due to genetics but results past that are indecisive. This causes more and

more money to be spent on research in hopes of being able to prevent autism from
occurring once scientists figure out what causes it. Unfortunately this is only a small
portion of what is actually needed to help people with autism and their families and the
government and scientists seem to forget that the children also need services, such as
therapy and camps that can help them become integrated into society and help them
live a full life..
Families are looking for interventions, not papers.
- Thomas Insel, National Institute of Mental Health, on the need to translate genetic
research findings into practical treatments for autism.
Autism has been littered with decades of false promise and small piolet pilot trials that
turn out to be nothing, and even silly, silly medicines that lead to a lot of hope but go
nowhere.
-Alexander Kolevzon, Seaver Autism Center in New York City, on proceeding
with cautious optimism following promising results from a trial of IGF-1 to treat PhelanMcDermid syndrome.
Advertising & Services
The other parts funding goes to included advertising/awareness and services. Making
people aware of autism is very important as it can help others who may not have heard
about autism before and their child or family member could very well be affected without
realizing it. Advertising also helps to pull in additional funding from sources other than
the government. While all this is great the most important part of funding is the services

for the people with autism and their families. The people need the services to help them
live as normal a life as possible given whatever variation of ASD they have. However
according to Autism Speaks that was their lowest percentage of the funding spent. At a
measly three percent there are not as many great and helpful services as there could
be. If you go on the U.S. Department of Human and Health Services and the National
Institute of Health websites about autism funding they briefly mention that services exist
and then speak of research for multiple paragraphs. For an organization designed to
help people with autism they should invest in more funding spent on services to help
instead of advertising and research.
WHAT NEEDS MORE FUNDING
Autism is a major public health emergency that is taking an enormous toll on millions of
families across the country who need answers that can only come through further
research. Families are also desperate to access services that are, at this point, grossly
inadequate to meet the current and growing needs of people with autism. According to a
2007 Harvard School of Public Health study, it costs the United States approximately
$35 billion each year to care for people with autism a number that has clearly
increased over the past two years with the rising prevalence among the youngest
people with ASD and a growing demand for housing, work skills and opportunities,
healthcare, and other services that simply do not exist for adults with ASD.

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As you can see from this graph, although federal funding for autism research fluctuated
from fiscal years 2008 through 2012, it increased overall during this period, from
approximately $169 million in fiscal year 2008 to $245 million in fiscal year 2012about
a 45 percent increase (about a 37 percent increase when adjusted for inflation to fiscal
year 2012 dollars). However even as funding has increased the actually services
needed by people with autism, such as therapies and doctor visits, has yet to
significantly increase. It seems people are too focused on the reasoning behind autism
and what causes it, they stray away from actually helping the people who have it.
My Solution:

In order to fix the problem I see in where the funding goes I believe there needs to be a
charity created that strictly focuses on providing services for people with autism,
specifically adults with autism. Who, according to the 2007 Harvard School of Public
Health survey, don't have the services that are offered for children, offered to them. It is
time to make the playing field even between research scientists and families with
autistic members.

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Work Cited
"Autism Speaks Again Calls Upon the Federal Government to Increase Funding for Autism."
Autism Speaks. Autism Speaks Inc, n.d. Web. 03 Dec. 2015.

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Autism Spectrum Disorder. WebMD. WebMD, n.d. Web. 10 November 2015.

Crosse, Marcia. Federal Autism Activities. Autism Speaks. United States Government
Accountability Office, 20 May 2014. Web. 4 November 2015.

Crosse, Marcia. "Federal Autism Research: Updated Information on Funding from Fiscal Years
2008 through 2012." GAO. U.S. Government Accountability Office, n.d. Web. 03
Dec. 2015.

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Funding: Project Listing by Category. Research Portfolio Online Reporting Tools. National
Institute of Health, 8 July 2015. Web. 7 November 2015.

Leonard, Andrew. President Obama Signs Landmark Combating Autism Act. Autism Speaks.
Autism Speaks, 12 September 2014. Web. 2 November 2015.

National Institute of Neurological Disorders and Stroke. Autism Spectrum Disorder Fact Sheet.
NINDS. National Institute of Health, 3 November 2015. Web. 10 November 2015.
Taylor, Chris. "The Costs of Raising an Autistic Child." Money. Time, n.d. Web. 02 Dec. 2015.
"What We Fund." Autism Science Foundation. Autism Science Foundation, n.d. Web. 2 Dec.
2015.

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