A Letter from Autism Speaks CEO this World Autism Month
Autism Speaks is committed to a clear vision: a world in which all people with autism can reach their full potential. In this world, access to information and resources is a universal right, untethered to geographical or societal boundaries. People with autism — and the family and friends who stand alongside them — are supported through every stage of life. Where total acceptance of autistic people — beyond simple awareness — is the societal standard.
This vision of the future gives Autism Speaks its clarity of purpose. It fuels and guides our organization every day. It is why we work non-stop to support autistic job seekers, advocate for policies at the state and federal level for access and inclusion and ensure our Autism Response Team is on-call to offer people with autism, families and caretakers with information, tools, and the highest quality of resources available. And it is why we will continue to increase our efforts to engage the community more directly. As the father of an autistic son, it’s a vision that I’m dedicated to creating for future generations.
But hindsight can be just as important as foresight.
Autism Speaks was founded in 2005. Over the past 18 years, advances in research coupled with the lived experiences of people with autism have greatly evolved the world’s understanding. It has also transformed our organization, allowing us to learn and grow in our journey. While we’ve helped countless people through our resources, grants, research and programs over the years, we’ve also made mistakes. We have not been perfect in our representation of autism and what it means for each person’s experience with it. From content produced years ago that we would not consider now, to language we no longer use today, we continue to learn and evolve. We no longer advocate, support or discuss searching for a “cure” and removed the term from our vocabulary many years ago. We no longer simply use blue in our materials, instead featuring a spectrum of colors. We know that each experience with autism is uniquely individual and personal. We won’t always get it right, but we will always work to do our best, and we will continue to look to the autistic community to help guide us in our efforts.
It is important to us that the work we do with the community is informed by and driven by those in it. That is why we employ, consult and partner with many autistic people and those connected to autism. We have autistic individuals on our Board of Directors, in leadership positions, on advisory committees and on the front lines of the services offered such as the Autism Response Team. Our network includes autistic individuals, as well as caregivers; they are writers, engineers, IT specialists, graphic designers – and the heart of our organization.
Recently, the CDC reported an increase in the prevalence of autism from 1 in 44 children to 1 in 36 children, including increased diagnosis in minority communities. This makes our vision feel more important today than ever before.
So, what can I promise from Autism Speaks as we continue the next chapter?
As an advocacy organization, we will make sure that others’ stories are heard. We will continue to listen, and to fund research, grants and scholarships for those looking to positively impact the lives of autistic individuals. We will continue to lobby for insurance and other benefits for those with autism nationwide, no matter who they are or where they live. We won’t stop fundraising. And we’ll continue to use those funds to invest in enhancing and creating new services to reach and support autistic people in every community. We’ll continue to provide the broadest range of resources available, with significant attention given to those who may need more help than others. We’ll find new and exciting ways to bring people together. We’ll be by the side of anyone who looks to us for support in navigating this journey.
I’ve seen firsthand how the needs and aspirations of autistic individuals and their families can change over time. We know, for instance, that information on autism and aging is significantly lacking. For me and my family, the focus now is helping my son make a successful transition to adulthood in a way that is meaningful and achievable for him. With global estimates ranging as high as 85 percent unemployment or underemployment in autistic individuals, our workplace initiatives, such as Workplace Inclusion Now, are increasingly important. Helping autistic individuals find employment, and whenever possible, live independently, has been a top priority for me since becoming CEO, and it’s an area that I promise we will continue to improve as we fulfill our vision for a better future.
Autism Spectrum Disorder (ASD) is just that – a spectrum – with an ever-evolving range of characteristics, capabilities and considerations. Having autism is complex. It is unique, emotional and at times, both challenging and inspiring. It is something to be further discussed and understood. It is something to be included, not othered. Embraced, not stigmatized.
It is on us, as Autism Speaks and as the broader community, to make sure that we are doing all that we can to stand together for a world of difference.