This past October, Keith Wargo was named the president and CEO of Autism Speaks, an organization dedicated to aiding individuals on the spectrum and their families. Responsible for the management of Autism Speaks, Wargo is working to guarantee that the mission of the organization is being fulfilled. Autism Speaks is working to promote greater understanding and acceptance, to create a world where all individuals on the spectrum can reach their full potential. The organization is devoted to advancing research into causes and treatments for autism spectrum disorder.
The Real Spectrum: I understand you have a son who is on the autism spectrum. How has his diagnosis impacted his life?
Mr. Wargo: My son is 23. He was born in San Francisco but we moved back here when he was quite young. We noticed some differences around when he was 2. He missed some milestones, participated in repetitive behaviors, and exhibited difficulties with attention. My son was diagnosed a couple of weeks before 9/11. He has done really well; there are a number of very good programs here in New Jersey. He graduated from high school about a year and a half ago. He actually just started his first full-time job.
What was it like for your other child, growing up with a sibling with autism?
Our other child is in college. I think if you asked her she’d say that it made her a little bit more mature and definitely allowed her to look at the world from a different perspective, appreciating things that young people may take for granted when seeing the opportunities she was given that [my son] was not able to get.
How would you describe Autism Speaks?
We’ve been around for 17 years now. Autism Speaks is the largest autism advocacy organization. Our goal is to help people of all ages by providing services, science, resources, and support systems. During this month [April], we are focusing on doing everything we can to put forward awareness, acceptance, and inclusion for people on the spectrum since it is World Autism Month. We are focused on doing the most good for the most people across the spectrum.
Having raised a son with autism, how does that influence your vision as the new president and CEO of Autism Speaks?
I feel that the journey that my wife, my son, and I have had together is very similar to the journey of Autism Speaks. My son is 23 years old. Our organization is 17 years old. Back in the early 2000s, there was relatively little awareness and understanding for the disorder. So, when he was diagnosed in 2000, we didn’t know anybody with autism or who had a family member with autism. It was completely foregin to us. There was no Autism Speaks and very little information regarding any support. My wife, Anne, and I relied on the little bits of information we could find on the internet. We happened to be lucky to be in the state of New Jersey, which actually had more valuable resources for autism. We were fortunate that way. When Autism Speaks started in around 2005, the focus was pretty much on awareness. The organization has done some really incredible work that the awareness today is much different. At the same time, over the last 17 years, individuals with autism have grown up, like my son. As you probably know, when you reach 21, the services provided through IEP programs and schools go away and will stop providing, however, your needs don’t go away. Autism Speaks has grown in this way and concentrated on the lifespan, whether it be to help with employment, healthcare, housing, or postsecondary education. We are beginning to look at the impacts of autism on adult aging and looking more broadly across the lifespan of individuals on the disorder. There are 5 million adults in the US that are autistic and 70,000 individuals on the spectrum a year are aging out of school based services.
For every dollar that is donated to Autism Speaks, how much of it goes to research?
86 cents to the dollar that is collected goes to our mission, going to research, advocacy, and support systems.
What types of research are being conducted?
We do research across a variety of numerous areas. With the World Health Organization, we are completing a 6-year long project to do caregiver-skills training. That is a program that is being conducted in 30 countries internationally that are under-resourced in terms of having diagnostic technicians and school services. As I alluded to earlier, we are doing research around aging in autism and what that looks like. We are continuing to do research on health and wellness across the spectrum as well.
What are the biggest challenges you face?
I think the biggest challenge we face is while we are the largest organization in the autism community, we are still quite small. We are about 150 people. We have a very broad mission to serve the community the best we can across advocacy and research. It is a big mission. It is critical that what we are doing is high-quality and is the best we could put forward. We have to be really thoughtful about where we are best positioned to help and where it is the best to partner with others.
What are you most excited about when looking towards the future?
I am most excited about our ability to continue to support across the lifespan. We are blessed with a social media following of 3.8 million people across all platforms. It is a very engaged universe of people. We tell people’s stories and people come to us to tell their story. We are fortunate to provide information and support to a broad population. We have 80,000 contacts per year coming to our autism response team. These are people who come to us regarding diagnoses or jobs locally in their area. Autism Speaks offers resource packages that we hold for the community. We have a million people per year come to us for those resources. I look at that and I am excited because I know there is a big community of people who need our help and are coming to us.