Episode: Research, Lived Experience & the Future of Neurodiversity Practice
Guest: Dr. Blánaid Gavin — Consultant Child & Adolescent Psychiatrist; subspecialist in ADHD; Chair of UCD's Neurodiversity Equality, Diversity & Inclusion Working Group; Co-lead of Making UCD a Neurodiversity-Friendly Campus; researcher, lecturer, and clinical practitioner.
Host: Michele Van Valey
Producer: Ian Lawton
Dr. Blánaid Gavin joins Michele for a deep discussion on the tension—and necessary collaboration—between medical frameworks, academic research, and lived experience within the neurodiversity movement. The conversation moves through the challenges of accessing assessments, the limits of current systems, the shifting understanding of concepts like PDA, masking, and ABA, and the difficulty of keeping research aligned with rapidly evolving social narratives. Blánaid also describes UCD's large-scale neurodiversity initiative, the development of new interdisciplinary book series, and the need for rigorous, inclusive research methods grounded in first principles.
The tension between clinical, educational, and lived experience perspectives is real but necessary—and can drive meaningful progress.
Modern research funding now requires co-production: "nothing about us without us" is built into proposal structures.
Systems risk tokenism unless there are mechanisms for meaningful lived-experience participation.
Research struggles to keep pace with social media-driven cultural change, especially around terms like PDA and masking.
Masking needs clear definitions, not blanket good/bad labels—its meaning varies with context and intention.
CAMHS and related supports remain chronically under-resourced, reducing capacity for holistic, multi-disciplinary assessment.
ABA's journey—from constitutional "right" to widely critiqued practice—illustrates how social constructs shift rapidly.
First-principles thinking helps when formal diagnostic language is unclear: start with the child, the parent, the present difficulty, and the desired outcome.
Co-occurrence (autism, ADHD, anxiety, PDA profiles, intellectual disability, etc.) demands integrated approaches rather than fragmented assessments.
UCD is building a comprehensive neurodiversity strategy, including environmental audits, qualitative research, staff/student surveys, and action-based policy change.
A major new interdisciplinary book series (mental health, higher education, criminal justice) aims to bring academic and lived-experience voices together.
00:00–01:47 — Introductions; defining the tension between medical and lived-experience perspectives.
01:47–04:30 — Co-production in research; avoiding tokenism; embedding lived experience in funding structures.
04:30–08:06 — The research ecosystem: inequities in mental health funding; burnout; staying current with evolving evidence.
08:06–10:48 — AI, social media, and the speed of cultural change; challenges in generating timely research.
10:48–12:53 — PDA debates; diverse presentations; unmet needs in assessment frameworks.
12:53–14:33 — The case for multidisciplinary, integrated assessment models; the risk of over-subspecialisation.
14:33–17:00 — Systemic underfunding of CAMHS; firefighting in an overwhelmed service.
17:00–20:46 — The ABA pendulum: from constitutional right to human-rights concern; holding the centre.
20:46–22:31 — Listening to lived experience without losing nuance; avoiding extremes.
22:31–25:41 — Masking: definitional drift, social media lingo, and scientific clarity.
25:41–27:03 — Language shifting faster than research; diluted concepts (trauma, masking, PDA).
27:03–31:26 — Making UCD a neurodiversity-friendly campus: research stages, audits, surveys, action plans.
31:26–33:48 — "Everybody" inclusion vs. individual needs; special classes vs. mainstream.
33:48–36:32 — Future direction: interdisciplinarity, international collaboration, building a central hub for neurodiversity research.
36:32–41:37 — New book series with Routledge; emerging topics (mental health, higher education, criminal justice, gender, later life).
41:37–42:37 — The Neurodiversity journal; creating space for unheard voices; closing thoughts.
UCD Neurodiversity Working Group
Stanford Neurodiversity Project
Rutledge (Routledge) Neurodiversity Book Series (new releases on mental health, higher education, criminal justice)
Neurodiversity (journal, Sage)
Baroness Cass Review (UK, gender and clinical care)
"Tension is inevitable—but it can be productive."
"Co-production must be real, not performative."
"If language shifts without clear definition, research can't keep up."
"Systems under pressure can only firefight; they cannot innovate."
"Everyone's needs are different, even when the labels look the same."
Host: Michele Van Valey
Guest: Dr. Blánaid Gavin
Producer: Ian Lawton
Recorded for the Neuroconvergence Podcast.
