The recent debate sparked by autism researcher Uta Frith has exposed a growing divide between traditional autism research and autistic lived experience.
As more adults identify as autistic and the autism spectrum continues to expand, an increasingly urgent question emerges:
Who gets to define autism?
Researchers? Clinicians? Or autistic people ourselves?
Read the full article on Substack: Divergent Menopause
In this episode, I unpack the controversy surrounding recent interviews with Professor Dame Uta Frith and reflect on what the debate reveals about the past, present, and future of autism research.
Drawing on my own experiences as an autistic ADHDer (AuDHDer), parent of autistic children, and survivor of perimenopause, PMDD and surgical menopause, I explore why many autistic people feel triggered by this discussion, and why autistic voices must be central in conversations about autism.
In this episode
• The controversy surrounding recent interviews with autism researcher Uta Frith
• Why some researchers believe the autism spectrum has become “too wide”
• The growing divide between traditional autism research and autistic lived experience
• Why masking, sensory needs, and late diagnosis are still debated
• How generational views of disability shape autism discourse
• The rise of autistic-led research and advocacy
• Why many autistic people feel distrustful of traditional research models
• The urgent need for research that improves autistic quality of life
• Future research questions that could genuinely help autistic people
Topics discussed
Autism research, Neurodivergence, Late autism diagnosis, Masking and autistic burnout, Medical misogyny, Self-diagnosis, The social model of disability, The double empathy problem, Neurodivergent mental health, Autistic menopause
About the host
Sam Galloway (she/her) is an autistic ADHDer (AuDHDer), writer, and creator of Divergent Menopause.
Following her own experiences of neurodivergent perimenopause, PMDD, and surgical menopause, Sam writes and speaks about the intersections of autism, neurodivergence, hormones, and midlife mental health.
Her work focuses on peer support, advocacy, and helping neurodivergent people navigate difficult transitions.
Content note
This episode includes discussion of:
• medical gaslighting• medical misogyny• mental health services• suicide and suicidal ideation
Please take care while listening.
Discussion questions
This topic has sparked huge debate online, and I’d love to hear where listeners land:
• What do you think the biggest gap is between autism research and autistic lived experience?
• Have you ever encountered professionals who dismissed masking or sensory needs?
• What areas of autism research do you think deserve more attention?
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This publication runs on a patron membership model, and paid subscribers help fund independent writing and advocacy centred on neurodivergent lived experience.
