Nothing About Us Without Us: How Neurodivergent Voices Shape Autism Research

In this Psych Crunch episode, Emma Palmer Cooper speaks with James Cusack, Chief Executive of Autistica, and Amy Pearson, developmental psychologist, about the imperative to include autistic and neurodivergent voices in psychological research. They discuss shifts from a medical model to a human-centred, inclusive approach, the value of participatory methods over tokenistic consultation, and practical guidance for researchers on engaging lived experience from diagnosis through to translation of findings into real-world outcomes. The conversation highlights how diverse autistic experiences require thoughtful methods, meaningful dialogue with autistic people and families, and proactive strategy to ensure research translates into better support, employment, healthcare, and attitudes.

Introduction and the premise of inclusive research

The episode foregrounds the maxim nothing about us without us, applying it across psychology with a focus on neurodiversity and autism. Host Emma Palmer Cooper explains the aim to explore how including autistic and neurodivergent voices can improve research quality and real-world impact. The guests bring lived experience and policy leadership to the conversation: James Cusack, Chief Executive of Autistica, and Amy Pearson, a developmental psychologist who is autistic. The core message is that autistic people experience significant inequalities and that research should be framed to address those disparities while valuing diverse lived experiences.

“The big thing that I hope that we've got better at is thinking about how autism research can actually improve people's lives.” - James Cusack

Evolution of autism research and inclusion

The speakers trace a shift away from purely medical models toward understanding autism as a lived experience with diverse trajectories. They emphasize acknowledging inequalities in quality of life, health outcomes, and life expectancy, while recognizing autistic contributions to society. This reframing supports priorities set by autistic people and their families, including diagnosis access, mental health, and employment. A recurring theme is that inclusion isn’t a one-off consultation but an ongoing life-cycle involvement, integrating autistic voices from conception through dissemination.

Cusack notes that meaningful inclusion involves selecting the right tools for the job, acknowledging that consultation can be a legitimate method rather than tokenistic activity. He argues that including autistic people throughout the research life cycle helps prevent incorrect assumptions about lived experience and leads to more robust, applicable findings.

“Including autistic people properly throughout the life cycle of research is really, really important.” - James Cusack

From tokenism to genuine co-production

The discussion contrasts tokenistic approaches with genuine co-production and participatory research. Pearson shares her journey from being a late-diagnosed autistic researcher to focusing on experience-based research, emphasizing autistic identity and masking. Both guests advocate for a range of participatory methods and warn against approaches that presume a single autistic experience or that aim to “solve” problems that autistic people do not prioritise.

The dialogue also covers how to avoid common missteps: assuming a universal autistic experience, reducing involvement to checkbox compliance, or failing to translate research into practical outcomes. The hosts and guests agree that genuine involvement requires relationships, trust, and an openness to adapt project aims as communities discuss their priorities.

Shifts in demographics, inclusion, and funder expectations

The speakers note a broader but still incomplete diversification of who participates in autism research. While more autistic women and adults are involved, many samples remain predominantly white and female. This signals progress but also the need for deeper, intentional outreach to marginalised groups. The rise in adult diagnoses and a broader view of neurodiversity are welcomed, yet they caution against simply swapping one homogeneous group for another. Funding bodies increasingly require lived-experience inputs in research plans and reviewer panels, which can help reduce tokenism and promote real impact.

Cusack explains that funders now value plain-English summaries and robust lived-experience plans, which can improve grant success and ensure research translates into policy and practice. This shift, he suggests, helps “move the needle” toward outcomes such as better diagnosis, employment, and healthcare access for autistic people.

Amy Pearson and lived experience in practice

Amy Pearson describes her background as an autistic researcher who centres experiential knowledge in research design. She highlights an organic, collaborative approach—starting with informal conversations and evolving into co-produced projects with autistic researchers and allies. Her work on suicidality and autistic experiences illustrates how lived experience can reframe questions, refine measures, and produce more relevant findings for intervention and support.

She reflects on the value of early involvement, noting that meaningful collaboration can fundamentally alter research questions, methods, and interpretations. Pearson also emphasizes the importance of not siloing autistic researchers in autism-specific topics but encouraging cross-neurotype leadership to benefit broader science and policy.

Advice for researchers and practical takeaways

The guests offer concrete guidance for researchers embarking on lived-experience work. Start with dialogue, ask communities what questions matter, and be prepared for ideas to evolve. It is essential to avoid solving problems that autistic people do not prioritise and to recognise that autistic behaviours can be adaptive responses to environments. When done well, lived-experience engagement can lead to more relevant measures, higher recruitment quality, and better research uptake in real life.

They stress the need to view involvement as integral rather than optional, and to invest time up front in building genuine relationships across neurotypes. The conversation also underlines the value of allies in leadership roles and the importance of translating research into practical changes in diagnosis, employment, healthcare, and attitudes toward autistic people.

Quotes that capture core themes

“If you get involvement right, you can create the right sort of forms of support and intervention which ultimately enable people.” - James Cusack

“One size never fits all.” - James Cusack

“I am a late diagnosed autistic autism researcher.” - Amy Pearson

“It’s urgent, and you have to treat this like it’s urgent.” - Dame Stephanie Shirley

Conclusion and a call to action

The episode closes with a collective call to researchers to listen to neurodivergent voices and to embrace participatory practices that are ethical, effective, and geared toward real-world impact. The guests remind listeners that research should serve autistic people and their families by improving emotional and practical outcomes, altering attitudes, and creating inclusive worlds where neurodiverse people can thrive.