‘We have so much to offer’: Community members’ perspectives on Autism research

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First published online 13 May 2024.

Why this study was done

Autism research is undergoing a shift. For a long time, most studies focused on what’s “wrong” with Autistic people, often ignoring their voices and lived experiences. But now, more Autistic advocates and researchers are calling for a new approach—one that values Autistic perspectives and focuses on improving real-life outcomes.

However, while researchers have started to listen more to Autistic people, we still know little about what everyday community members, including Autistic individuals, their families, and professionals, think about autism research. This study aimed to fill that gap.

What the study did

The researchers analysed data from online focus groups involving 55 people across Australia. These participants included:

  • Autistic adults

  • Parents and caregivers

  • Professionals like teachers, psychologists, and support workers

They discussed their experiences with autism research and what they thought needed to change.

What the study found

The researchers identified three major themes from the discussions:

1. Changing the narrative

  • Many participants felt that autism research often paints a negative picture of Autistic people—focusing too much on what’s “wrong” rather than what’s different.

  • This “deficit-based” view can harm self-esteem and mental health.

  • Participants wanted research to focus more on how environments (like schools or workplaces) can be more inclusive, rather than trying to “fix” Autistic people.

  • They emphasised that non-autistic researchers often misunderstand Autistic experiences because they lack lived experience.

2. “We have so much to offer”

  • Autistic people and their families have valuable insights that can improve research and support systems.

  • Participants stressed that they know what works for them and want research to reflect their real-life needs.

  • They also highlighted the diversity within the Autistic community and said this diversity should be seen as a strength, not a challenge.

3. It’s time to take Autistic people seriously

  • The community strongly supported the idea of “nothing about us without us”—meaning Autistic people should be involved in every step of the research process.

  • They want to be treated as equal partners, not just subjects of study.

  • Some were sceptical that researchers would be willing to share power, but others were hopeful that change is possible.

What this means?

  • Autism research needs to move away from trying to “normalise” Autistic people and instead focus on helping them thrive in a world that often isn’t built for them.

  • Researchers should work closely with Autistic people to co-design studies that are meaningful and respectful.

  • More training and support are needed for researchers to understand and value lived experience.

  • Ultimately, this shift could lead to more effective, inclusive, and impactful research that truly benefits the Autistic community.

This study was conducted by:

Ms. Tori Haar, Prof. Charlotte Brownlow, Ms. Gabrielle Hall, Dr. Melanie Heyworth, Dr. Wenn Lawson, Dr. Rebecca Poulsen, Ms. Tamara Reinisch and Prof. Elizabeth Pellicano.

To read the full article, visit the journal.

For other accessible formats, please see the column to the right.

Disclaimer: The QDRN has utilised generative AI to refine the wording of this plain language summary. All content has been checked for accuracy, appropriate tone and clarity and approved by the author.

First published online 13 May 2024.

Why this study was done

Autism research is undergoing a shift. For a long time, most studies focused on what’s “wrong” with Autistic people, often ignoring their voices and lived experiences. But now, more Autistic advocates and researchers are calling for a new approach—one that values Autistic perspectives and focuses on improving real-life outcomes.

However, while researchers have started to listen more to Autistic people, we still know little about what everyday community members, including Autistic individuals, their families, and professionals, think about autism research. This study aimed to fill that gap.

What the study did

The researchers analysed data from online focus groups involving 55 people across Australia. These participants included:

  • Autistic adults

  • Parents and caregivers

  • Professionals like teachers, psychologists, and support workers

They discussed their experiences with autism research and what they thought needed to change.

What the study found

The researchers identified three major themes from the discussions:

1. Changing the narrative

  • Many participants felt that autism research often paints a negative picture of Autistic people—focusing too much on what’s “wrong” rather than what’s different.

  • This “deficit-based” view can harm self-esteem and mental health.

  • Participants wanted research to focus more on how environments (like schools or workplaces) can be more inclusive, rather than trying to “fix” Autistic people.

  • They emphasised that non-autistic researchers often misunderstand Autistic experiences because they lack lived experience.

2. “We have so much to offer”

  • Autistic people and their families have valuable insights that can improve research and support systems.

  • Participants stressed that they know what works for them and want research to reflect their real-life needs.

  • They also highlighted the diversity within the Autistic community and said this diversity should be seen as a strength, not a challenge.

3. It’s time to take Autistic people seriously

  • The community strongly supported the idea of “nothing about us without us”—meaning Autistic people should be involved in every step of the research process.

  • They want to be treated as equal partners, not just subjects of study.

  • Some were sceptical that researchers would be willing to share power, but others were hopeful that change is possible.

What this means?

  • Autism research needs to move away from trying to “normalise” Autistic people and instead focus on helping them thrive in a world that often isn’t built for them.

  • Researchers should work closely with Autistic people to co-design studies that are meaningful and respectful.

  • More training and support are needed for researchers to understand and value lived experience.

  • Ultimately, this shift could lead to more effective, inclusive, and impactful research that truly benefits the Autistic community.

This study was conducted by:

Ms. Tori Haar, Prof. Charlotte Brownlow, Ms. Gabrielle Hall, Dr. Melanie Heyworth, Dr. Wenn Lawson, Dr. Rebecca Poulsen, Ms. Tamara Reinisch and Prof. Elizabeth Pellicano.

To read the full article, visit the journal.

For other accessible formats, please see the column to the right.

Disclaimer: The QDRN has utilised generative AI to refine the wording of this plain language summary. All content has been checked for accuracy, appropriate tone and clarity and approved by the author.

Page published: 26 Aug 2025, 03:07 PM