Re-Storying Autism: Why We’re Doing This Work and Why It Matters

Helen Edgar

By Helen Edgar (Associate Director Neurohub Community & Founder of Autistic Realms)

Together with David Gray-Hammond, I co-created Re-Storying Autism because we both reached the same point from different paths: we could no longer accept the stories about autism that dominate families’, professionals’, and Autistic people’s lives.

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Stories that frame autism as a tragedy, a deficit, or a problem to be fixed. Stories that place responsibility on Autistic people to adapt, endure, mask, and comply often at profound cost to their well-being. Stories that leave parents and carers feeling blamed, professionals feeling stuck, and Autistic people feeling broken.

Re-Storying Autism exists to interrupt those narratives and offer something more honest, more ethical, and more humane.

The book and on-demand video course — now a number one Amazon bestseller in Family Health — are not checklists or behaviour manuals. They are an invitation to rethink how we understand autism itself. Rather than locating autism solely inside an individual, we take a relational and ecosystemic view, exploring how Autistic experience emerges through interactions between nervous systems, sensory environments, relationships, culture, and systems of power.

At the heart of this work is a radical shift:
from “What is wrong with this person and how can we make them fit in?”
to “What does this person need, and what needs to change around them?”

Across the 6 modules, we explore core ideas that many families and professionals tell us finally help things make sense: monotropism and deep attention, sensory and interoceptive differences, regulation and co-regulation, burnout, trauma, and the double empathy problem. Meltdowns, shutdowns, withdrawal, and burnout are not framed as behaviour problems or failures of resilience, but as nervous system responses to chronic overload, misattunement, and lack of safety.

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We also centre Autistic play, learning, and interests, not as distractions from development, but as vital pathways to regulation, identity, and wellbeing across the lifespan. Deep interests are not something to extinguish; they are often where safety, meaning, and flow live.

Re-Storying Autism is not written about Autistic people from a distance. We are both multiply neurodivergent, both parents and carers, and both deeply shaped by lived experience as professionals too. This work emerges from community knowledge as well as academic theory. Community sits at the centre of our framework, because connection, a sense of belonging and understanding can heal people support good mental health.

When we talk about Autistic burnout, we describe it as a crisis of connection from systemic ableism and unmet needs which result in overload and not enough capacity to cope. Burnout is not an individual failing. When we talk about trauma, we understand it as the cumulative impact of living too long in environments that demand masking, endurance, and silence. When we talk about support, we move away from compliance and control, toward consent, collaboration, and dignity.

Last night’s community webinar (recording in Neurohub Community and on YouTube here), reminded us why this work matters. Parents, carers, professionals, and Autistic people told us they felt listened to, validated, and perhaps most importantly, hopeful. Hope that things can be different and that support does not have to mean erasure of Autistic identity, and that understanding can replace blame.

Re-Storying Autism is about rewriting the stories we tell about being Autistic, so that Autistic people’s lives can unfold with safety, meaning, and belonging.