As the largest autism science and advocacy group in the United States, Autism Speaks offers support for families, provides funding for researchers, raises awareness of the disorder, and fulfills many other important roles. However, there are some important controversies that surround this major non-profit. If you're considering becoming involved in this organization, it's helpful to understand a bit about its goals and policies.
A Charity With Clout
Since its founding in 2005 by grandparents of a child with ASD, Autism Speaks has grown into one of the most influential ASD advocacy groups in the country. According to Charity Navigator, the organization brought in more than $53 million in 2012, most of which came from gifts and contributions. It spends a relatively small percentage of its budget on administrative expenses, and it has excellent financial transparency in all its dealings.
Additionally, Open Secrets reports that Autism Speaks spent about $525,000 on government lobbying in 2013. The organization attempts to sway lawmakers in favor of greater autism awareness and funding.
In its mission statement, the organization says that its primary goal is to "change the future" for families and individuals dealing with the challenges of ASD. Specifically, this involves funding research that the organization finds promising, raising public awareness about ASD, and supporting families affected by autism.
The organization funds research into possible causes of autism, the best treatments and therapies, and other important aspects of the disorder. According to the Autism Speaks website, some of its research areas include environmental factors that may cause autism, the development of high risk baby siblings of children on the spectrum, the role of probiotics in treating symptoms of ASD, genetic factors that may influence the disorder, and many other topics.
One of the primary goals of Autism Speaks is to increase public awareness about the signs and symptoms of autism, possibly leading to earlier diagnosis of children with the disorder. From the "light it up blue" campaign that involved using blue lights in buildings and homes to attract attention to the iconic puzzle piece symbol you may see on cars, the organization has worked hard to make autism part of the national dialog and help younger children gain access to early intervention services.
With helpful guides on everything from helping a child with autism make daily transitions to navigating the relationship between home and school, Autism Speaks has a wealth of resources to support families. There are also "tool kits" for particularly challenging situations like going to the dentist or getting a haircut and helpful information about safety, technology, and other issues. Families can also find out how to connect with each other and even participate in research about ASD.
Autism Speaks is a popular organization, but there are a few controversies that have tarnished its reputation with some audiences. From the focus of its research funding to its view of autism, it's important to understand these criticisms before becoming involved.
Funding of Vaccine Research
The controversy of whether vaccines are related to autism rates has been raging since the first scientific paper on the topic was published in 1998. Despite assurances from the Centers for Disease Control and Prevention (CDC) and other scientific organizations that vaccines and the vaccine preservative thimerosal are unrelated to ASD, Autism Speaks continued to fund research into a vaccine-autism link through 2009. That year, the journal Nature reported that the organization's top communications executive, Alison Singer, resigned in protest.
Autism Speaks has since revised its position on autism and vaccines, stating that it recommends that parents immunize their children according to established schedules and that there is no link between the disorder and vaccines.
View of Autism as a Disease
According to Psychology Today, another important controversy surrounding the organization stems from its focus on autism as a negative disorder needing a cure. Instead of this focus, many people in the autism community want more resources to go to support independent living rather than attempting to solve the "problem" of the disorder.
How to Get Involved
If you want to donate your time or financial resources to this organization, you can learn more about the ways you can help on the Ways to Give website. From sponsoring a fundraising walk to "liking" the organization on Facebook, there are many ways to get involved.
A Powerful Organization
Although the organization is controversial among some groups, Autism Speaks has worked hard to raise awareness and funding for ASD. Whether or not you agree with its policies and approach, there's no denying that this is a powerful organization that hopes to help the autism community.