Our evolution

Since Autism Speaks was founded in 2005, advances in research coupled with the lived experiences of autistic people have greatly evolved the world’s understanding of autism spectrum disorder (ASD). This has also transformed our organization, allowing us to learn and grow in our journey.

We recognize that our understanding of the autism community today is not the same as it was in 2005. We may not have always been perfect in our representation of autism and what it means for each person in our community, but we have taken steps to become more inclusive and represent the diversity of experiences of autistic people and their loved ones. Over the years, we have helped millions of people through our resources, grants, research and programs and made significant strides in creating a world in which all autistic people can reach their full potential.

Examples of our evolution

Expanded advocacy efforts

Autism Speaks stands alongside the autism community in working on the federal and state levels to pursue policy solutions for autistic people and their families. Thanks to federal advocacy efforts started by Autism Speaks and its predecessor organizations, over $5.2 billion in federal funding has been gone toward programs focused on autism research, data, training of medical professionals, and development of evidence-based services and family resources since 2006. Every year, our federal funding requests evolve to address important issues for the autism community—from transition age and adult services to health disparities, supports for those with severe and challenging behaviors and more.

On a state policy level, in the early 2000s, we launched a nationwide campaign to begin autism insurance reform in every state. After achieving that goal, our focus shifted to address the remaining gaps in coverage of autism care and to improve access to quality lifespan services, from IEP transition planning to home and community-based services (HCBS). With time, our advocacy efforts have evolved and diversified, now spanning the fields of healthcare, employment, education, financial planning, safety and law enforcement interactions, caregiver supports and more.

Increased autistic representation and community engagement

Over the years, Autism Speaks has made significant efforts to increase the representation of autistic people in our organization, advisory boards and in our messaging. We have autistic employees, leaders and board members who participate in decision-making, contribute to our programming and advise on our activities.

Our organization also seeks external perspectives from the community to guide current and future programming. We collaborate with autistic people, parents and caregivers, healthcare professionals, researchers and advocates from around the world on our programs and initiatives.

Shift in research priorities

Autism Speaks grew out of mergers with the Autism Coalition for Research and Education, the National Alliance for Autism Research and Cure Autism Now. Early on, we aligned with other research organizations and funding agencies, including the federal government, to prioritize research into finding a cure for autism and understanding its underlying causes. Today, the consensus in the field around the goals of autism research has transformed in response to community feedback and our growing understanding of ASD—and our organization’s funding priorities have evolved with it.

Our current Science department priorities focus on improving quality of life for autistic people through greater understanding of health needs, developing and delivering personalized healthcare, increasing access to quality care and enhancing our understanding of autism across the lifespan. Autism Speaks does not support eugenics and no longer supports research that aims to find a cure for autism.

Greater focus on inclusion and acceptance

As autism has become more widely understood in our society, Autism Speaks has shifted the focus of our messaging from awareness of autism to acceptance and inclusion. We are committed to celebrating the diversity of the spectrum, highlighting the stories and perspectives of autistic people and their caregivers, and sharing evidence-based information and resources to educate the public about autism and create a more inclusive society.

Since our founding, we have worked hard to accurately portray the wide range of experiences one may have with autism, and unfortunately, sometimes we have missed the mark. In 2009, a video called “I Am Autism” was published which represented autism as a burden to families. This video is in no way reflective of the Autism Speaks of today. This video has been a great regret in the history of our organization, and we deeply apologize to those who we offended with it.

Expansion of programs and resources

Autism Speaks is committed to delivering crucial information and resources to our community. In 2007, we launched our Autism Response Team (ART), which provides direct support to hundreds of thousands of autistic people and their families. The Autism Response Team helps connect community members with local resources, information, best practices, financial tools and other services. In recent years, ART has begun serving community members in Spanish as well as English.

Our community outreach team also hosts educational webinars and events for autistic people, caregivers and service providers that inform them on topics covering the full lifespan. Every year, we expand our database of resources, culminating in this year’s launch of our updated Resource Guide.

Our Services and Supports programs have grown as a direct result of increased autistic representation and a greater focus on acceptance and inclusion. In response to community feedback, we have put greater emphasis on adolescence and adulthood with the launch of Workplace Inclusion Now (WIN), our employment program.

Learn more

To learn more about our evolution as an organization, check out this letter from our CEO, Keith Wargo.