What autistic people actually want researched

Work in progress. Public outline; prose to follow.

What AutINSAR is

AutINSAR is the annual conversation between autistic people, researchers, family members, and professionals about what autism research should actually study. The 2025 edition (INSAR, Seattle) was compiled by Thinking Person’s Guide to Autism.

The gap, in one sentence

Research overwhelmingly studies causation and “treatment” — the things most autistic people neither benefit from nor want studied. What autistic people actually prioritize is barely funded.

The top research priorities autistic people named

• Mental health — how autism stigma becomes embodied shame, and how to reject it.
• Sensory processing — core to autistic experience, under-recognised, under-researched.
• Co-occurring conditions — AuDHD (autism + ADHD), PMDD, EDS/POTS/MCAS, ARFID, sleep, GI. Autism rarely comes alone; research still silos it.
• Autistic adulthood — employment, housing, autonomy. Research drops off a cliff after childhood.
• Autistic culture, joy, and lived experience — inherently valuable, not a deficit.

What’s missing from the research conversation

• How autistic people think (thinking and learning patterns).
• Barriers to healthcare and mental-health care, from autistic adults’ own views.
• How therapy can be effective when clinicians speak our language.
• The long-term harm of compliance-based “treatments” (ABA) and alternatives.

Why access is a research problem too

• Paywalls and jargon are the #1 barrier autistic people named to research reaching them. Accessible, plain-language synthesis is a stated unmet need — which is exactly what this subdomain exists to provide.

What parents and builders can do

• Center autistic-led sources (TPGA, ASAN, AutINSAR, #ActuallyAutistic researchers).
• Fund and amplify the priorities above, not causation/cure research.
• Translate research accessibly — that’s a contribution in itself.

Draft. Prose to follow. Source: AutINSAR 2025 recap, Thinking Person’s Guide to Autism.