Recently, there was an article written in The Daily (“Autism, allyship and Autism Speaks,” May 27, 2014) that was critical of Autism Speaks, the Stanford Autism Walk and the newly approved Autism Speaks U Stanford chapter. I am the brother of a 16-year-old on the Autism Spectrum and the founder of those efforts here at Stanford, and I believe that the article deserves a response.
My intentions are not to criticize the author of that article, as she is entitled to her own opinions. But I believe that the presentation, in many ways, distorts the true accomplishments of Autism Speaks.
Autism Speaks has invested more than $200 million in innovative research that has led to great progress in uncovering some of the mysteries of autism. It has also assisted in continuously decreasing the possible age of autism diagnosis, finding risk factors for autism and identifying genes involved with the disorder. In progress right now is the largest comprehensive genome-sequencing project in history, in which Autism Speaks will map the genomes of 10,000 people with autism to serve as a database for scientific study into diagnosis and personalized treatment for individuals on the Autism Spectrum.
Apart from research, Autism Speaks has also played a key role in the dramatic increase in autism awareness in the world via its Walk Now for Autism Speaks events – held in close to one hundred cities across North America and involving more than 340,000 walkers – between 2012 and 2013; its Light It Up Blue campaign on World Autism Awareness Day, in which over 8,400 buildings, landmarks and communities participated across all seven continents in 2013; and its advertising campaigns. Its Family Services Committee has also created toolkits to assist parents with everything from everyday tasks, such as brushing one’s teeth, to major life adjustments, such as the first hundred days after an autism diagnosis, the transition from adolescence to adulthood and finding employment. Finally, Autism Speaks has helped pass Autism Insurance Reform Bills in thirty-seven states, requiring these states to cover a portion of each family’s treatment expenses. For more information, go to www.autismspeaks.org.
Despite all its accomplishments, Autism Speaks receives criticism from certain self-advocates, and I would like to dispel some of the common criticisms. The author of “Autism, allyship, and Autism Speaks” claims that Autism Speaks spends more money on fundraising than family services. Yes, it does. However, Autism Speaks will be spending an unbelievable $8 million on family services this year, and it could never do that without its successful fundraising efforts. Furthermore, its Walk Now campaign is characterized as a fundraising expense when it, in fact, serves many critical goals, such as creating awareness, acceptance and a sense of community for families. Comparing fundraising expenses to the family services budget is a misdirection. No other organization has made such a significant commitment to providing assistance to families dealing with autism.
Another argument is that Autism Speaks has no representatives with autism on any senior or advisory board. However, there are individuals with autism on the Family Services Committee (where they can have the most direct impact on the lives of those on the Autism Spectrum and the families), as well as the many others involved within the organization. The Autism Speaks website does not state in these contributors’ descriptions that they have autism, since autism does not define these individuals or their contributions to their respective committees or positions. In addition, the Board of Directors is made up mostly of family members of individuals with autism, who see the challenges of those on the Spectrum firsthand every day and work hard to fulfill their goal of changing the future for all those affected by autism.
Finally comes the argument that most Autistics don’t want a cure for autism. I think we can all agree that we need further support for individuals with autism to help each person maximize their strengths and to create opportunities for those on the Spectrum. So where does the striving for a cure come from? To begin with, children with autism are three and a half times more likely to suffer from severe gastrointestinal issues. In addition, the Spectrum includes individuals who are non-verbal, often become too stimulated to fall asleep and in some cases cause harm to themselves and others around them. Therapies and medications can cost tens or even hundreds of thousands of dollars per year, and many with autism will never live on their own or hold a job.
I am not arguing that everyone should be in favor of a cure or that we should spend all of our research dollars on searching for a cure. Instead, I hope that everyone can understand why many parents want to relieve their children’s symptoms. Each individual with autism and their family has a different experience, and some cases are far more debilitating than others. Few individuals with autism are able to gain admission to Stanford, live independently and write an article for the Daily. Instead, most have significant challenges that can affect their ability to communicate, make friends, live independently and procure employment. I think it is unfair for the author to act as if she speaks for all, or most, of those with autism.
As a community, we must come together with our common goals: to educate Stanford students about autism, to create a sense of community at Stanford for those with autism or with family members on the Autism Spectrum and to raise vital funds for research, awareness, family services and advocacy. I hope that you all will join me in my mission to better support the autism community.
Spencer Savitz ’17
Contact Spencer Savitz at [email protected]