The role of the autistic in research

Thoughts around autistic people leading research rather than only participate by giving accounts of lived experiences.

I think rather than talking about one autistic or neurotypical being the leader, which seems to imply a position of dominance by one group, we should be thinking more in terms of what Judy Heumann used to term as Collaboration Cooperation. Both disabled researchers and non disabled researchers need to work together for meaningful change. And most research is a team effort anyway. What the non disabled researchers bring to the table is a lot of experience in how to go about research and they’ve had a couple of centuries of head start in this. When you combine this with collaboration and leadership of autistic researchers you get the following added benefits.
  1. Autistic insights through a nuanced understanding of autistic experiences that cannot be fully captured by observation or second-hand accounts. 
  2. Innovative approaches through distinct cognitive and perceptual experiences. This can lead to innovative research methods and findings that might be overlooked by non-autistic researchers. 
  3. Increased relevance and application towards practical and relevant issues. 
  4. Empowerment and representation as autistics in leadership, challenges traditional narratives of them only being research subjects. 
  5. Reducing bias in data interpretation from a neurotypical lens. 
  6. Building trust among autistic participants that this research is likely to be ethical and beneficial.  
  7. Policy and practice impact as autistic researchers are more likely to advocate for changes that directly improve the lives of autistics. Their leadership in research can influence policy, educational practices, and therapeutic approaches in ways that are more aligned with the needs of the autistic community.

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