Jeremy Sicile-Kira, Adult with Autism: "It takes a community to assist those with autism"
Public Invited: NVAC H1N1 Vaccine Safety Report Conference Call

National Autism Survey: Evaluating Satisfaction With US Government’s Investment and Approach To Investigating Causes of Autism

Opinion-poll-unsatisfactory Below is a portion of the detailed report generated from a new survey titled, National Autism Survey Evaluating the Satisfaction With the US Government’s Investment and Approach To Investigating Causes of Autism, by Beth Clay. You can read the Full Report HERE  including charts and graphs.
"There is the need to regard Autism Spectrum Disorders as an urgent public health concern." (CDC)

Author: Beth Clay

National Autism Survey
March 2010

Introduction: In March 2010, an online survey was launched to seek current perspectives from individuals in the autism community as it relates to the United States (US) government’s handling of autism research. The survey was promoted on Facebook, Twitter, and through email. Several organizations and electronic information resources were gracious enough to post online or email an announcement of the survey for their constituents to be informed. These included Unlocking Autism, SafeMinds, Age of Autism, and the Schafer Autism Report.

In the Eyes of the Community They Serve, How are the CDC and NIH Doing? While I am a woman of many opinions, it is not my opinion that matters when it comes to evaluating the focus and investment of US government agencies into autism research. Rather it is the opinion those who are living with autism, individuals themselves, parents, grandparents, siblings of individuals with autism as well as medical and educational personnel working with individuals on the spectrum.

Who Might Benefit From This Report? The White House, Legislators, Policymakers, Autism and related organizations, researchers, educators, families and the media. More than 2,000 People Responded: It was hoped with the launch of the survey to have at least 1200 respondents in order to give the survey the power to be a ‘national’ survey. With 2090 individuals completing the survey of 14 questions, 12 of which were multiple choice questions, the goal was achieved. Question 13 requested demographic information including city, state, and country. Because there are many aspects of the government’s interaction with autism, research, services, and education, a final question was posed that provided the opportunity for a personalized text response. Sixteen hundred (1,600) individuals took the time to offer their personal comments on the government’s handling of autism spectrum issues.

Key Findings:

• 90.4% of the autism community is not satisfied with the level of resources and approach that the US government is taking in their investigating the causes of autism.

• Over 40% not satisfied at all with NIH’s spending on autism research. Only 1% completely satisfied.

• 41.6 % of respondents are completely dissatisfied with the NIH autism research focus.

• 43 % are not satisfied at all with the quality of research funded by the CDC as it related to autism statistics?

• 58.3% are not satisfied at all with the research conducted by or funded by the CDC regarding any potential relationship between autism and vaccine injury?

• 94.1% want to see more research funding on environmental toxins and their potential relationship to autism and other neurodevelopmental disorders?

• 90.2% want to see parents have a greater say in what the government funds relative to autism spectrum disorders research?

• 90.3% want to see studies comparing vaccinated and unvaccinated individuals to determine if there is a difference in the rates of autism and other medical conditions?

• 60.6% of respondents were parents of a child with autism who also has or has had gut issues.

A Diverse Group Responded: While the largest group of responders (1592) was parents of someone with autism, 17.5% of responders were non-parents, thus giving the survey a diverse group of respondents. This was followed by 8.3% (173) of individuals who knew someone with autism (but did not fit into another category); 4.8% (99) grandparents; 4.1 percent (86) of respondents were individuals living with autism; 4% (83) educators; 1.8% (38) health care professionals; 0.5% (11) siblings; and five people (0.2%) of respondents did not know anyone with autism. Ninety-nine (99) percent of the respondents were in the United States, with 29 international individuals responding.

Conclusions: It has been ten years since Congress launched an in depth inquiry into what the CDC and NIH were doing to investigate the epidemic increases in the rates of autism spectrum disorders. This national survey shows major dissatisfaction by the autism community with the amount of resources committed to the investigations as well the focus and quality of much of the research. The community wants research looking at environmental toxins and their potential relationship to the autism epidemic and other neurodevelopmental disorders. The autism community also wants to see a study comparing diagnoses between vaccinated and unvaccinated populations. The autism-vaccine injury question is far from settled science.

Furthermore, the autism community overwhelming desires for parents to have a greater say what the government funds. Autism remains fastest growing disability in the country. The rates of autism continue to skyrocket.

The overwhelming requests from the autism community: “Listen to Us!” and “Help Us!”

You can read the Full Report HERE.

About the Author:
Ms. Beth Clay serves as Senior Vice President of Capitol Strategy Consultants, Inc., where she works with clients on their Executive and Legislative branch interactions, strategic and media planning, and grassroots campaigns. Prior to entering the private sector, Ms. Clay served as a Senior Professional staff member on the Committee on Government Reform with Chairman Dan Burton and subsequently the Subcommittee on Human Rights and Wellness. She led oversight activities regarding health research, practices, and regulation. These included extensive investigation into the epidemic rise of autism, vaccine injury, ADHD, and other health related investigations affecting children, seniors, and military members.

Prior to her service on Capitol Hill, Ms. Clay served seven years at the National Institutes of Health in administration and committee management capacities within the international, alternative medicine and rare disease organizations of the NIH. Ms. Clay's volunteer activities have included scouting, children's and veterans' charities, human rights and hospice.

All Rights Reserved 2010


Feed You can follow this conversation by subscribing to the comment feed for this post.

Amanda Blinn

Thank you Ms. Clay for stepping up to the plate. If only this survey could have been part of the Census. But I agree with another poster here. The US Government doesn't want to know.


Great report! Unfortunately those in power don't care or aren't listening and just want us to go the hell away.

Yet they keep making more of us. Soon we will outnumber them, and then they will be screwed.


I remember filling this out. Well, the autism community and others have what are they going to do?? What if anything? More of the same...??? Nothing.


Excellent report.

I never completed the survey but my family is also completely disattisfied with the CDC and NIMH/NIH regarding autism research and spending. Actually we're disgusted and disconcerted by the level of conflicts both these agencies are burdened with.


Thank you, Beth Clay -- this is excellent.

Regarding gut issues, as noted 60.6% of repondents were parents who said "yes" to the question on whether the person w. autism has digestive issues. But another 16.4% were other respondents who said "yes" to this question (grandparents, educators, people on the spectrum...) So a total of 77% of respondents said that the person they know with autism has digestive issues. This is so high!

Becky Estepp

Fantastic work Beth. Let's hope this survey gets traction. I truly feel it is representative of the community.

Kevin Barry

• 90.4% of the autism community is not satisfied with the level of resources and approach that the US government is taking in their investigating the causes of autism.

(The other 9.6% are only kidding.)

Tanners Dad

Thank you Beth. Great information. This will be a tool to show elected officials that there is unity within Autism Community #UWAC & We Vote!

Verify your Comment

Previewing your Comment

This is only a preview. Your comment has not yet been posted.

Your comment could not be posted. Error type:
Your comment has been saved. Comments are moderated and will not appear until approved by the author. Post another comment

The letters and numbers you entered did not match the image. Please try again.

As a final step before posting your comment, enter the letters and numbers you see in the image below. This prevents automated programs from posting comments.

Having trouble reading this image? View an alternate.


Post a comment

Comments are moderated, and will not appear until the author has approved them.

Your Information

(Name and email address are required. Email address will not be displayed with the comment.)