Andy put a post up asking autism parents to name the one fear they have never said out loud. 858 people answered, and 103 of them said almost exactly the same thing.So we sat down and read them. Not the tidy ones, the ones people only admit when nobody can see their name next to it. Mourning the child you thought you were getting. Envying families who can wake up and just go somewhere. Feeling like you are managing your child rather than enjoying them. Wondering, honestly, what your life would look like if this had gone differently.And underneath nearly all of them, the same question that every one of us circles back to at three in the morning: what happens to them after I am gone.If you have ever had a thought you were ashamed of, this episode is 858 people telling you that you are not the only one who has had it.Timestamps00:00 Cold open00:13 Intro00:39 The Indi app and a summer of tracking02:25 The post that got 858 replies03:33 The child you thought you were getting07:12 Watching other families do the ordinary12:38 "It's not a superpower, and I'm tired of pretending"16:00 Neuro spicy, and who gets to pick the words23:11 Managing, not living26:33 What it costs the other children30:52 The fear nobody says out loud32:47 What happens when I die42:42 Studio news, guests, and the fantasy league47:13 Why we now support a Serie B team in ItalyGaz and Andy are two dads raising autistic children, talking about the bits nobody else says out loud.Link tree in bio.
Robbie Williams announced at 52 that he is autistic, and said he has "a little bit of autism". Within a day the community had split over the phrasing.Gaz and Andy use it as a way into the question that keeps coming back. If one word covers Robbie Williams, and the same word covers Lydia, who is five, non-verbal and working with Makaton cards, does it still tell anyone anything? And if it doesn't, would splitting autism into levels help, or would it quietly move support away from the families already fighting hardest to get it?Along the way, Lydia brings her mum her shoes and says ""Daddy"" for the first time. Thomas drops his communication card in a packed Aldi, and two strangers know exactly what it is.Timestamps00:00 Robbie Williams, 52, and ""a little bit of autism""07:42 Has the word ""autism"" stopped meaning anything?09:23 ""I have to explain that she's not Robbie Williams""11:25 What levels would do to the families in the middle14:03 ""Mild"" autism, and who gets to decide it's mild16:25 Making profound autism visible enough to change policy18:16 Lydia brings her shoes and says ""Daddy""20:26 A spectrum ""widened to the point of collapse""21:53 Private clinics, and the money behind a diagnosis22:54 Should the diagnosis just be the starting point?25:21 Why is the EHCP process still on paper?26:58 The enemy isn't another autistic family30:11 Does ""autism"" tell you enough about the person?32:12 The autism community police35:04 ""Thomas isn't suffering. I am.""37:23 Aldi, and the stranger who knew what the card was for41:27 Who would be in charge of drawing the lines?44:23 If it's already split where you live, tell us how it works47:21 The autism dads' night out51:07 Country Fest, and two men judging dogsLink tree in bio.
Andy put a video up asking one question: which phrase from a professional never left you? His own was a paediatrician who would not answer whether Lydia was autistic, and instead said "we just need to ensure she reaches her potential, whatever that looks like." Around 685 parents answered. It is the only post we have ever done that got more comments than likes.So we sorted the lot and read them back. The denial, the low expectations, the gatekeeping, the ones that were meant kindly and landed like a brick, and the small number that got it exactly right. Over half of the worst of it came from a professional or a school. This one is heavy in places and very funny in others, and if you have ever been told your child does not look autistic, you are going to recognise most of it.Timestamps00:00 Thomas spells Playbarn on his iPad and reroutes the whole day02:49 The video Andy posted, and the phrase that never left him06:26 685 replies, and more comments than likes07:30 The split: denial, low expectations, cruelty, blame09:18 Over half of it came from a professional or a school10:34 "He doesn't look autistic" and what spazzy is actually short for15:10 The comebacks parents keep ready15:48 The grandad in the supermarket18:15 "Your autistic children may never thrive in school"19:02 Why families actually want a diagnosis22:35 "She isn't worth the funding" and the iceberg23:24 "Masking is a skill you should be proud of"24:38 The tongue tie nobody would treat25:51 Written off, and proven wrong32:05 The ones that were meant kindly34:53 The worst thing anyone said35:50 The comments about the comments36:01 What autistic adults asked us to hear37:38 The professionals who got it right40:36 A diagnosis doesn't change who your child is41:10 Hope without a promise41:25 Eye contact, and who it is really for45:04 Takiwatanga: in his or her own time46:01 "So am I. Don't worry. We see each other."47:20 Lydia's sleep, transitions and the summer holidaysTimecodes are taken from the raw recording and need tightening once the cold open is on the front of the final cut.Latest episode in the link tree in bio.
Across the world, parents of autistic children are being offered something thatsounds almost miraculous. Clinics promise better speech, better eye contact,calmer behaviour, and in some cases claim to repair or reverse autism. The priceruns from £10,000 to £40,000, and often more than once.Over the last few months we've been approached by clinic after clinic wanting tocome on the show and sell it to you. We said no. Instead we went and read thestudies.This one isn't about having a go at parents. Every parent looking at this isacting out of love, and we've both been desperate enough to try anything. Butlove doesn't mean a clinic gets to make huge claims without evidence. Stem celltherapy is a legitimate area of research. It is not currently a proven treatmentfor autism, and there's a difference between something being researched andsomething being proven.We also get into the ITV whistleblower, and the GB News piece asking whether"those people" should have access to children.Timestamps00:00 Hope, science, or a very expensive gamble02:21 We are not attacking parents10:15 What autism actually is13:18 What stem cells actually are15:56 The 2017 Duke study, 25 kids and no placebo18:47 The 2020 Duke study, and what it found24:38 Claim: a 95% success rate29:08 Why you'd swear blind it worked31:45 Thomas and Lydia progressed. Neither had stem cells35:37 Claim: it repairs the autistic brain38:12 Claim: most children improve40:45 Claim: our treatment is evidence based43:02 The risks nobody puts in the brochure48:00 What that money could buy instead50:45 The influencer taking commission54:02 Have a word with yourself66:45 "Have you missed the treatment window?"72:32 Myths and facts82:55 The ITV whistleblower86:50 GB News and "those people"Latest episode in the link tree in bio.
This week Gaz and Andy sit down with Jolanta Lasota, Chief Executive of Ambitious about Autism, at their college in Isleworth. 16 years leading the charity and mum to a 21-year-old autistic son, Jolanta has seen the whole picture, from the early years right through to adulthood and employment.We talk about why purpose matters more than exams, the young man who is non-speaking and holds down two jobs, the boy who was allowed to come to school in his pyjamas, and naming the grief nobody warns you about. Jolanta describes raising an autistic child as walking through woods with no path and no torch, and says the job is to be the one who carries the light. Honest, hopeful, and one of our favourite conversations yet.Timestamps- 00:00 Welcome, and where we are today- 00:27 [GUEST]'s journey, 16 years at Ambitious about Autism- 01:07 What's really changed in how we understand autism- 05:57 The sensory pod that blew us away- 06:58 The schools, the age groups, and post-19 provision- 10:36 Why "purpose" matters more than a curriculum- 12:20 "Walking through woods with no torch": what family life feels like- 13:27 The non-speaking young man with two jobs- 15:03 Are employers actually changing?- 15:49 Policy, the white paper, and autism as a political football- 20:06 Being the "happy helper", never enemy-ising people- 22:14 What school looks like at four to seven- 24:40 Focus on strengths, don't drill them on what they can't do- 27:09 Gaz's own school story: six D's and learning differently- 33:03 The weight of GCSEs and "lost leaders"- 38:02 Don't underestimate them: the iPad "daddy" moment- 40:28 Parents' guilt, and why it won't always be okay- 43:47 Grief without a death- 45:06 What's next for Ambitious about Autism- 49:13 Thanks and close