How Helen Learned She Was Autistic After a Lifetime of Misdiagnosis
In this episode, Angela speaks with Helen Shaddock about being diagnosed with anorexia at 13, spending 25 years in eating-disorder treatment, and only later discovering she was Autistic.
In this meeting of The Late Diagnosis Club, Dr Angela Kingdon welcomes Helen Shaddock, a multidisciplinary artist, writer, and PhD researcher whose work explores autism, eating distress, OCD, and healing through creativity.
Helen was diagnosed with anorexia at 13 and spent the next 25 years moving through eating-disorder pathways that never fully explained her experience. It wasn’t until her late 30s — after years of treatment, physical injury, and burnout — that an occupational therapist recognised what others had missed: Helen was Autistic.
Helen and Angela explore the long overlap between eating distress, OCD, and autism, how Autistic regulation was repeatedly misread as pathology, and how late diagnosis reframed decades of self-blame. Helen shares her experiences around interoception, stimming, routine, sensory regulation, and the difference between Autistic eating and eating disorder treatment.
This episode is also about creative becoming — how art, writing, and storytelling can be tools for survival, meaning-making, and identity reconstruction.
🎧 Listen to this episode:
🪑 Attendees
Chair: Dr Angela Kingdon — Author, community-builder, and Autistic advocate
Guest: Helen Shaddock — Autistic multidisciplinary artist, writer, and PhD researcher
You: The Listener!
🗒️ Meeting Agenda
Opening remarks from the Chair
Member introduction: Autism missed across treatment pathways
CBT, clinical harm, and misinterpretation of Autistic regulation
Autistic eating vs eating disorder frameworks
Burnout, grief, and late autism recognition
Creative becoming through art and storytelling
Key learnings
Club announcements
🧾 Minutes from the Meeting
1️⃣ Opening Remarks
Angela welcomes Helen as a long-standing member of the LDC community and frames the conversation around storytelling, creativity, and late recognition. This meeting emphasises intimacy and pacing — meeting one another “one at a time,” in a way that feels distinctly Autistic.
2️⃣ Member Introduction: Helen’s Story
Helen was diagnosed with anorexia at 13 and spent her adolescence and adulthood navigating eating-disorder treatment, CBT, and medical surveillance.
Many Autistic traits, including routine, stimming, sensory sensitivity, and the need for predictability, were interpreted as pathology rather than regulation.
She experienced chronic fatigue in early adolescence, missed significant periods of school, and was bullied. Later injuries, stress fractures, and physical complications were consistently attributed to anorexia, obscuring the role of autism and interoceptive differences.
3️⃣ Discussion Highlights
25 years missed: Autism identified at 38 after decades of eating-disorder treatment
Misinterpretation: Autistic stimming and regulation framed as calorie-burning or compulsion
Interoception: Pain, hunger, and bladder signals go unnoticed until extreme
Routine & safety: The difference between Autistic eating and eating distress
Grief: Mourning the support that could have existed earlier
Language shift: Choosing “eating distress” over “eating disorder”
Creative becoming: Identity as fluid, evolving, and reconstructed through art
ArtEd: Digital storytelling, visual diaries, and community zines
4️⃣ Key Learnings
Eating distress can mask autism — and vice versa
Late diagnosis can dissolve decades of self-blame
Autistic regulation is often misunderstood as a disorder
Creativity is not a luxury — it is a survival tool
Community reduces isolation and restores dignity
📌 Notice Board
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🎙️ Executive Producers
Amy Burns, Anamaria B Call, Andrew Banner, Anna Goodson, Ashley Apelzin, Audrea Volker, Ben Coulson, Brian Churcek, Cappy Hamper, Carley Biblin, Charlene Deva, Chloe Cross, Clay Duhigg, Clayton Oliver, Danny Dunn, Daria Brown, David Garrido, Emily Burgess, Eric Crane, Erik Stenerud, Fiona Baker, Grace Norman, Helen Shaddock, Jaimie Collins, Jason Killian, Jen Unruh, Jennifer Carpenter, Julia Tretter, Kathie Watson-Gray, Kenneth Knowles, Kira Cotter, Kristine Lang, Kyle Raney, Llew P Williams, Laura Alvarado, Laura De Vito, Laura Provonsha, Lily George, Nelly Darmi, Nigel Rogers, Rachel Miller, Tim Scott, Tyler Kunz, Victoria Steed, Yanina Wood.
🎧 Producers
AJ Knight, Bobby Simon, Da Kovac, Eleanor Collins, Emily Griffiths, Hannah Hughes, Jennifer Kemp, Jonas Fløde, Kate F, Katie N Benitez, Kendra Murphy, Lisa Dennys, Logan Wall, Louise Lomas, Melissa Nance, Nicola Owen, Rebecka Johansson, Sam Morris, Sarah Hannah Morris.