Autistic Culture Presents Late Diagnosis Club: How Helen Learned She Was Autistic After a Lifetime of Misdiagnosis
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.
🪑 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
📣 Club Announcements
🎧 The Late Diagnosis Club is available on Spotify, Apple Podcasts, and all major platforms.
💬 Join our online meetups and community at latediagnosis.club.
📌 Check the LDC Notice Board for Member Contributions
💜 There is a small charge — but no one is turned away for lack of funds.
🌈 Celebrate autistic voices with early access, ad-free listening, and our full archive at AutisticCulturePlus.com
🌐 Visit www.autisticculturepodcast.com
📲 Follow us on Instagram: @autisticculturepodcast
🎙️ 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.
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