This week, Orla and Leanne are joined by Ciara Jones — mother, full-time carer, and one of Ireland's most tireless autism advocates. Ciara is mam to three and a half children (as she puts it) including Gavin, who is autistic, intellectually disabled and preverbal. In 2018 she left a 20-year career to become his full-time carer.
Ciara opens up about her happy childhood in Cabra, her parents' quiet strength, and the devastating loss of her own mother — a moment that pushed her to finally open the autism support hub she'd always dreamed of. She shares the story of volunteering in a Russian orphanage in her twenties, meeting her husband Mick and building their family, and the early, lonely days of parenting a non-speaking autistic child.
From there, Ciara talks through the extraordinary advocacy work she's built: the AsIAm 5K, the Autism Support Hub she runs with her friend Caroline, the Sparkle for Autism Ball (which has raised almost €400,000 towards a goal of half a million), and her role as founder of Chasing Justice — a group supporting over 200 families whose autistic children have been abused or secluded in Irish schools. She speaks candidly about the day Gavin ran from her at school, what daily life with him looks like now, the guilt she carries about what lies ahead for her other two children as young carers, and what keeps her and Mick going as a couple.
It's a raw, funny, and deeply moving conversation about grief, resilience, community, and refusing to let anyone feel alone.
Content note: this episode discusses child illness/death (stillbirth, cancer, end-of-life care), and later touches on the abuse and seclusion of autistic children in schools.
Timecodes
- 00:00 – Intro: Orla and Leanne welcome Ciara Jones
- 00:14 – Ciara introduces herself: mum of three and a half, full-time carer to Gavin (16), Dara (12) and Éabha/her youngest, plus stepson Michael
- 01:24 – Who Ciara was before "mummy" — growing up in Cabra
- 02:08 – Life as a young carer; her dad the grafter, her mam "the most wonderful mother"
- 03:04 – Her mother's history — printing family, a stillborn baby never spoken of, and Ciara's own birth (an 11.5lb baby!)
- 03:51 – Her mam's two cancer diagnoses and quiet resilience
- 07:07 – The day her mother was diagnosed with breast cancer at 69 — and her mam's dark sense of humour through it
- 09:16 – Volunteering in a Russian orphanage in 2004 — meeting Debbie Deegan, the inspiration behind her advocacy
- 13:30 (approx.) – Meeting Mick, becoming a mum, and Gavin's early years
- 18:25 – Trying for more children, Dara's birth, and the isolation of early autism parenting
- 20:04 – Fundraising for Gavin's school and finding a sense of purpose
- 20:48 – Her 20 years working in Aer Lingus and building an autism community there
- 21:50 – 2018: leaving her career to become Gavin's full-time carer
- 22:25 – Stepson Michael's journey — from meeting Adam Harris to working at AsIAm
- 24:05 – Founding the AsIAm 5K — "we're not an island"
- 25:22 – Realising Gavin deserved to be asked about his day too — communicating with a non-speaking child
- 28:15 – Her mother's death during Covid, told through the glass at the nursing home
- 29:27 – "I'm begging you, don't let her die alone" — being with her mam at the end
- 34:47 – The moment she decided to open the Autism Support Hub
- 35:18 – The Autism Support Hub with Caroline — DCA forms, carer supports, and a free, all-voluntary service
- 36:55 – The origin of the Sparkle for Autism Ball
- 43:30 – Nearly half a million euro raised — and how people can support the cause (Instagram: Ciara Jones — Reaching Out to Autism)
- 45:03 – A day in Gavin's life — his routines, his independence, and his joy
- 47:23 – Orla and Dara as young carers, and the guilt of what the future holds for them
- 49:25 – The day Gavin ran from the car — a story about unpredictability and vigilance
- 54:59 – What it's really like for her and Mick as parents and as a couple
- 57:23 – The power of community — "nobody needs to be alone"
- 59:50 – Founding Chasing Justice — supporting over 200 families whose autistic children have been abused in school
- 1:00:44 – The pattern of blaming the child, not the adults in the room
- 1:01:33 – Seclusion is illegal — but it's still happening
- 1:03:59 – A small win: new child protection guidelines in schools, shaped by Ciara's own case
- 1:06:07 – Final words of wisdom: "find your community... you need to feel you belong"
- 1:09:08 – Closing thoughts and thanks