National Autism Indicators Report: Establishing a National Autistic-led Research Agenda

In the past, autism research has mostly been conducted by non-autistic people, and researchers have described autism as something bad that should be fixed. Describing autism in this way has negative effects on how society views and treats autistic people and may even negatively affect how autistic people view themselves. A collective of autistic self-advocates, autistic researchers, and like-minded allies wanted to fix this.

In September 2023, the Autistic Self-Advocacy Network (ASAN) and the Policy and Analytics Center (PAC), based at the A.J. Drexel Autism Institute, located within the Dornsife School of Public Health at Drexel University, held a symposium about autism research. A symposium is a meeting that brings people together to talk about an idea or problem.

The symposium was held over four half-day sessions with more than 150 participants, including speakers. We invited autistic self-advocates, autistic researchers, non-autistic researchers and other key collaborators to the symposium. The planning team prioritized autistic attendees as experts. Autistic people expressed what they wanted and needed from future research. Together, autistic self-advocates and researchers, both autistic and allies, set out to create a plan for research. Autistic people led the plan in collaboration with PAC team members. The symposium included discussion of topics that needed additional research and thoughts on how to go about doing this research.

Participatory research was a common topic of discussion at the symposium. Participatory research, in this specific instance, is when the autistic community and researchers work together to design, carry out, and share research. The symposium also centered research led by autistic people and autistic participants who belonged to more than one community that experiences marginalization, including:

• Autistic people of color (such as Black, Hispanic/Latine, Asian, Indigenous)
• Autistic people who do not communicate through speech, either all of the time or some of the time (also called “non-speaking” or “partially speaking” autistic people)
• Autistic people who are LGBTQ+. LGBTQ+ stands for lesbian, gay, bisexual, transgender, queer, and other marginalized sexual orientations and gender identities.
• Autistic people with intellectual disabilities
• Autistic people with mental health disabilities