What Autistic Adults Want Autism Research to Focus On

An important 2022 paper in Autism Adulthood brought together autistic self-advocates from around the world to discuss what matters most in autism research. Unlike many studies about autism, this one was led entirely by autistic researchers and advocates.

Why This Matters for Families

Historically, most autism research has focused on children and been conducted by non-autistic scientists. This paper highlights why including autistic voices - especially autistic adults who've navigated systems like schools and healthcare - is crucial for making research truly helpful for our community.

Key Takeaways

• The study wasn't a traditional research experiment, but rather a call-to-action by autistic experts about research priorities.
• It emphasizes that autistic people should be partners in designing studies about autism, not just subjects being observed.
• The authors stress that research should address quality of life for autistic people across the lifespan, not just childhood.

What Parents Can Do

While this paper doesn't offer specific therapy recommendations, it reminds us to:

• Seek out perspectives from autistic adults when making decisions about supports
• Support organizations led by autistic people
• Ask whether programs/services include autistic voices in their design

Limitations

This is an opinion piece by advocates rather than new experimental data. However, it reflects growing consensus that autism research needs autistic leadership.

Read the full paper: Autistic Perspectives on the Future of Clinical Autism Research (Published June 2022 in Autism Adulthood)