A Lived Experience Education on FND with Erica Tilley

“This is such an exciting time to talk about FND… researchers are finally acknowledging they’ve been too slow to listen to people with lived experience and use that to inform practice and future research.”

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Note: this episode contains sensitive information including experiences of restrictive practices. If this episode brings up feelings of distress, please reach out to your support network or call Lifeline on 13 11 14. If you or someone else is at immediate risk of harm, please dial 000. (These numbers apply within Australia; if you’re listening elsewhere, please contact your local crisis service.)

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In today’s episode, we explore the intersection of mental health and speech therapy with Erica Tilley, a neurodivergent (Autism, FND, ABI) Quality Auditor with prior clinical experience as a Speech Pathologist.

Erica has worked in clinical practice, research, and compliance - contributing to allied health guidelines, publishing on atypical parkinsonism and delirium, and presenting at conferences, including the 2015 Speech Pathology Australia conference. After her own health challenges, including a brain tumour and developing Functional Neurological Disorder (FND), she brings a valuable perspective that combines professional expertise with lived experience.

This episode is an opportunity to hear directly from someone living with FND - an area where lived experience has too often been ignored or dismissed due to misinformed guidelines and misconceptions. Erica’s insight invites us to consider how listening more closely to lived experience of FND can broaden understanding, reduce stigma, and shift how care is thought about and delivered.

In this conversation, Erica shares:

• What FND is and how it presents
• Common misconceptions and challenges in current guidelines
• The role of lived experience in shaping therapy and research
• Stigma, invalidation, and systemic barriers
• Personal experiences of restrictive practices (content note: restrictive practices are discussed)

This is not just a story about one person - it’s an invitation to reflect on how lived experience can guide more compassionate and effective care for people with FND.

Erica will be joining us again for a part 2 where she shares lived experience informed recommendations and principles of care for FND. This episode will be recorded on 5th November 2025. She welcomes questions beforehand, you can submit these to:

• mindfulspeechies@gmail.com
• Or DM us via our instagram @mindfulspeechies

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Connect with Erica Tilley:

• Email: ericatilley@live.com.au

Erica is available for paid Zoom/online meetings and presentations. Erica has created FND resources on lived experience informed and affirming support for FND, which will be shared as part of the second episode with her.

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Resources & Links Mentioned:

• Paper review, inc. Professor Mark Edwards: https://onlinelibrary.wiley.com/doi/10.1002/brb3.70168
• Janet Baker: https://neurosymptoms.org/en/symptoms/fnd-symptoms/functional-speech-swallowing-symptoms/
• Sonny J Wise:
• Neurodiversity paradigm: https://lnkd.in/gYSUbs54
• Services: https://www.livedexperienceeducator.com/services
• Neurodiversity affirming checklist
• Dr Katherine Gill:
• Website: https://fndaus.org.au/about/
• Commissioned Report on FND

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Separate to this episode, there’s currently an open petition calling for FND to be formally recognised by the NDIS. The petition closes on 3 October 2025: https://www.aph.gov.au/e-petitions/petition/EN7833

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The Mindful Speechies Podcast:Instagram: @mindfulspeechies

Andrew Watt

• Website: www.unitytherapy.com
• Email: andrew@unitytherapy.com

• X: https://x.com/SLPAndrew
• LinkedIn: https://www.linkedin.com/in/acwatt/

Kizzy Searle

• Website: www.attunedspeech.com.au
• Email: kizzy@attunedspeech.com.au

• Instagram: @attunedspeech
• LinkedIn: https://www.linkedin.com/in/kizzysearle/

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Thank you for listening :)