Neuroshambles

Episode 50 of this neurodivergent parenting podcast takes a clear, practical look at how families in the UK end up navigating the healthcare system when they suspect their child might be autistic and/or ADHD. Mark is joined by Lucy Pocock, a registered GP and parent of a neurodivergent child, as they pull back the curtain and take a deep dive into how the system works (and why it so often doesn’t).

 

They talk through the routes families are typically funnelled into when they’re seeking support: school evidence, GP involvement, referrals, and the confusing reality that the pathway can look completely different depending on where you live. It’s the sort of honest, informative discussion many families of autistic, ADHD and PDA kids wish existed when they first started asking questions.

 

Mark and Lucy also unpack what happens once ADHD enters the mix - including medication pathways, titration, prescribing delays, and the complexities of shared care. Lucy explains why bottlenecks happen, what GPs can and can’t do, and how those constraints land on families already stretched to breaking point.

 

Along the way, the conversation touches on demand-avoidant (PDA) profiles, why some parents go private, and what families can realistically expect when it comes to letters and evidence for things like EHCP and DLA. It’s the kind of candid, good humoured and insightful chat that this neurodivergency parenting podcast is known for.

 

CHAPTER TIMESTAMPS (ESTIMATED)

00:00:37 - Episode 50 intro

00:01:20 - Meet the Guest (Lucy Pocock)

00:03:07 - Topic of the Week – UK healthcare and ND referrals (the two main routes)

00:09:23 - The postcode lottery, delays, and mismatched pathways

00:17:42 - ADHD medication: shared care, titration, and why CAMHS take so long

00:27:31 - Lucy's journey with her own PDA son's diagnosis as a GP

00:34:00 - Training: Oliver McGowan and the impact within the NHS

00:37:15 - How much neurodiversity scepticism is there within the healthcare system?

00:42:00 - What can you do if your GP is not informed about neurodiversity?

00:46:15 - Are there really parents trying to take advantage of the system?

00:56:00 - What support can we ask for from our GP that we don't know about?

00:59:45 - Could GP's relieve some of the burden from CAMHS?

01:04:30 - GP limitations on prescribing drugs: melatonin and anti-depressants

01:07:00 - Shared care, Right to Choose and commissioning constraints

01:10:45 - Is the system broken? Why is support for neurodivergency such a postcode lottery?

01:20:30 - How can we fix the flaws in the healthcare system?

01:27:00 - Looking at the positives

01:30:03 - Neurodiversity Champions

01:32:27 - Tiny Epic Wins

01:35:26 - What the Flip Moments

 

LINKS TO STUFF WE MENTION IN THIS EPISODE

Shared care - https://www.wessexlmcs.com/guidance/understanding-shared-care-nhs-right-to-choose-and-private-providers/

Right to choose - https://adhduk.co.uk/right-to-choose/

CAMHS - https://www.youngminds.org.uk/young-person/your-guide-to-support/guide-to-camhs/

Oliver McGowan training - https://www.hee.nhs.uk/our-work/learning-disability/current-projects/oliver-mcgowan-mandatory-training-learning-disability-autism

FII (Fabricated and Induced Illness) - https://www.nhs.uk/mental-health/conditions/fabricated-or-induced-illness/overview/

Neuroshambles: Medicating our children | Danielle Jata-Hall - https://neuroshambles.com/episode/medicating-our-children-danielle-jata-hall

Melatonin - https://www.nhs.uk/medicines/melatonin/

Neuroshambles: The Bumpy Road to Diagnosis | Tam - https://neuroshambles.com/episode/the-bumpy-road-to-diagnosis-tam

Murmuration Community, Bristol - https://www.murmurationcommunitytherapy.com/

Incredible Kids, Bristol - https://incrediblekids.org.uk/

 

CONTACT NEUROSHAMBLES

🌐 Website: www.neuroshambles.com

📧 Email: [email protected]

📸 Instagram: @neuroshambles

🎵 TikTok: @neuroshamblespod

📘 Facebook: Neuroshambles

 

CREDITS

🎶 Theme music by Skilsel on Pixabay: pixabay.com

If you’ve ever felt like Key Stage 2 at school was when it all got harder - not only for your neurodivergent child, but also for you as a parent - this is the episode for you. Mark is joined by philosophy educator and fellow Neuroshambler Grace Lockrobin for a cathartic look at the ages of 7-11, which is where the wheels can start to wobble more for our autistic, ADHD or PDA kids.

Together, they unpack the pressures of conformity, the nightmare of homework and the heartbreak of parents evenings. From school trips and transitions to SATs and navigating playground politics, they shine a light on why this age can be so tough - and why the system often gets it wrong.

It’s warm, witty, and full of the kind of honesty that makes you feel just a little less alone when your child doesn’t quite fit the mould. 

If you’re searching for an autism parenting podcast or ADHD parenting podcast that actually reflects the messy, hilarious, heartbreaking truth of raising neurodivergent children, you're in the right place.

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CHAPTER TIMESTAMPS (Estimated):

00:00 - Intro and meet the guest

03:30 - What’s changed since we last spoke

05:50 - Intro to topic of the week

23:00 - The challenges of the shift in KS2 teaching style

10:00 - Misguided attempts to get them to "catch up"

13:00 - The role that transitions play in these difficulties

22:15 - Social cliques and friendship dynamics

35:15 - Bullying

43:00 - The difficulty of parents’ evenings

57:15 - Homework nightmares

1:00:40 - The unhelpful pressure of SATs

1:06:25 - School trips

1:12:10 - It's not all rubbish: looking at the positives

1:24:15 - Neurodiversity Champions

1:27:45 - Tiny Epic Wins

1:30:00 - “What the Flip?” Moments

1:33:50 - Wrap-up and where to find us

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LINKS TO STUFF WE MENTION IN THIS EPISODE:

SATs - https://educationhub.blog.gov.uk/2022/05/everything-you-need-to-know-about-sats/

Karate Zone - https://karatezone.com/

PDA Society - https://www.pdasociety.org.uk/

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CONTACT US

🌐 Website: www.neuroshambles.com

📧 Email: [email protected]

📸 Instagram: @neuroshambles

🎵 TikTok: @neuroshamblespod

📘 Facebook: Neuroshambles

🧵 Threads: @neuroshambles

⸻

CREDITS

🎶 Theme music by Skilsel on Pixabay: pixabay.com

What do we mean when we describe someone as “severely autistic”? Why is it so hard to explain what being autistic actually means? And how useful (or harmful) are terms like high-functioning, low-functioning, profound autism, or even Asperger’s?

Kieran Rose returns for a deep dive into the language we use to describe autism - and why it often does more harm than good. He and Mark explore the flaws in functioning labels, the dangers of ranking autistic traits, and how trying to quantify someone’s autism usually misses the point.

In a wide-ranging and compassionate chat, Mark and Kieran explore how complex, deeply personal and often contradictory this topic is - both for parents and for autistic people themselves. What starts as a provocative question ends up as a fascinating conversation about diagnosis, co-occurring conditions, identity, education, eugenics, power, and prejudice.

A powerful, enlightening and empowering episode - a must-listen for anyone parenting autistic kids who’s ever felt under pressure to explain, justify or minimise their child’s neurodivergence.

 

📍 CHAPTER TIMESTAMPS (Estimated):
00:00 - Intro: Meet Kieran Rose

04:30 - Life in a Fully Neurodivergent Household

08:00 - Topic of the Week: How Autistic Is Your Child?

12:00 - Labels, Bias, and the Stigma Around Autism

18:00 - High vs Low Functioning: Where It Comes From

23:00 - What Even Is Autism?

28:30 - The Flawed Legacy of Asperger’s

35:00 - Identity vs Diagnosis

42:00 - DSM-5 Levels of Autism: Why They Don’t Work

49:00 - Profound Autism and The New York Times Article

55:00 - A Counterpoint: The Voices We Don’t Hear

1:00:00 - Co-occurring Conditions and the Real Source of Needs

1:07:00 - Clinical Labels vs Lived Experience

1:14:00 - Mark’s Imposter Syndrome as an Autism Parent

1:18:00 - What’s the Alternative?

1:23:00 - Final Thoughts: Humanising, Not Diagnosing

1:27:00 - Neurodiversity Champions

1:33:00 - Tiny Epic Wins

1:39:00 - “What the Flip?” Moments

1:43:00 - Wrap-up & Where to Find Us

🔗 LINKS TO STUFF WE MENTION IN THIS EPISODE:
Kieran Rose website - https://theautisticadvocate.com/

Eugenics - https://www.newscientist.com/definition/eugenics/

Asperger Syndrome - https://www.autism.org.uk/advice-and-guidance/what-is-autism/the-history-of-autism/asperger-syndrome

Hans Asperger - https://en.wikipedia.org/wiki/Hans_Asperger

Lorna Wing - https://www.autism.org.uk/what-we-do/news/lorna-wing-an-autism-hero

DSM-5 - https://en.wikipedia.org/wiki/DSM-5

PDF Download of DSM-5 - https://ia800707.us.archive.org/15/items/info_munsha_DSM5/DSM-5.pdf

New York Times article: The Autism Spectrum Is Too Broad - https://www.nytimes.com/2025/10/16/opinion/autism-diagnosis-category-stigma.html

Greta Thunberg - https://www.bbc.co.uk/news/world-europe-49918719

What is monotropism? - https://www.autism.org.uk/advice-and-guidance/professional-practice/what-is-monotropism

Ehlers Danlos Syndromes - https://www.nhs.uk/conditions/ehlers-danlos-syndromes/

Communication First - https://communicationfirst.org/

Autism Central - https://www.autismcentral.org.uk/

Kieran Rose Animated Guide to Monotropism - https://youtu.be/qUFDAevkd3E?si=diwlbe4AHRcxfjQF

Kieran Rose Animated Guide to The Double Empathy Problem - https://youtu.be/qpXwYD9bGyU?si=7bnGR2UsrCgLa_hL

 

KIERAN'S HOMEWORK

Kieran Rose Blog: Autism, it’s Labels and the Language of Pathologising Rhetoric - https://theautisticadvocate.com/autism-its-labels-and-the-language-of-pathologising-rhetoric/

Sunday Times article: Extra time in exams ‘unhealthy’ for children with ADHD and autism - https://www.thetimes.com/uk/education/article/extra-time-exams-unhealthy-children-adhd-autism-k820s56zh

TES magazine article: Sami Timimi: Why ‘invented’ SEND labels are disabling pupils - https://www.tes.com/magazine/teaching-learning/general/sami-timimi-interview-problems-with-send-diagnosis-adhd-autism

Yahoo News: Badenoch says motability cars not for people with ADHD - https://uk.news.yahoo.com/badenoch-motability-cars-not-people-135341300.html?guccounter=1

📣 CONTACT US
🌐 Website: www.neuroshambles.com

📧 Email: [email protected]

📸 Instagram: @neuroshambles

🎵 TikTok: @neuroshamblespod

📘 Facebook: Neuroshambles

🧵 Threads: @neuroshambles

🎙️ CREDITS
🎶 Theme music by Skilsel on Pixabay: pixabay.com

Why won’t our neurodivergent kids just take the bloody Calpol? Michelle Parton joins mark to explore the baffling and emotionally loaded issue of kids who resist medical help.

Mark and Michelle swap tales of their kids’ iron-willed resistance to all forms of treatment - even when they’re clearly in pain, bleeding, or itching uncontrollably. Together, they explore the many reasons this might be happening - from sensory issues and PDA to past trauma, masking, and a fundamental lack of trust in strangers in latex gloves.

It’s funny, cathartic, at times heartbreaking - definitely one for any parent of autistic, ADHD or PDA kids who have ever tried (and failed) to put a plaster on their dysregulated child before they bleed out!

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CHAPTER TIMESTAMPS (Estimated):

00:00 – Intro & Meet the Guest: Michelle Parton

03:00 – Topic of the Week: Refusing Medical Help

08:00 – Kids hiding injuries

13:00 – Dysregulation about the prospect of going to the doctor

17:30 – Trust issues with medical professionals

23:00 – Lyme disease and the unholy nightmare of blood tests

29:00 – Trying to administer medication

35:00 – The impact of sensory overwhelm: Plasters, creams & the taste of medication

42:00 – The added complication with PDA kids

47:00 – The role that masking might play

54:00 – How alexithymia and interoception can influence things

59:00 – The impact of past traumatic experiences

1:04:00 – The positives

1:06:00 – Neurodiversity Champions

1:10:00 – Tiny Epic Wins

1:14:00 – “What the Flip?” moments

1:18:00 – Wrap-Up & Where to Find Us

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LINKS TO STUFF WE MENTION IN THIS EPISODE:

Lyme Disease - https://www.nhs.uk/conditions/lyme-disease/

Alexithymia - https://www.bbc.co.uk/news/articles/cg4ky5qgrlpo

Interoception - https://www.autism.org.uk/advice-and-guidance/professional-practice/interoception-wellbeing

Beyond Creative Education - https://www.beyondcreativeeducation.org.uk/

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CONTACT US

🌐 Website: www.neuroshambles.com

📧 Email: [email protected]

📸 Instagram: @neuroshambles

🎵 TikTok: @neuroshamblespod

📘 Facebook: Neuroshambles

🧵 Threads: @neuroshambles

⸻

CREDITS

🎶 Theme music by Skilsel on Pixabay: pixabay.com

In part two of this deep dive into transitions, Mark reunites with Pete Wharmby to look at more reasons they can cause such a monumental challenge for autistic, ADHD and PDA kids (and adults).

From difficulties pulling our kids away from screen-time and replacing a broken fridge, to the regular flashpoint of brushing teeth, Mark and Pete share real-life strategies that can make these transitions more manageable - or at the very least a bit more fun.

Pete shares what he wishes more teachers understood, and Mark reflects on how small wins in transition can change the whole feel of a day.

Essential for any parent of neurodivergent kids who has ever said “we need to leave now”… and regretted it instantly.

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CHAPTER TIMESTAMPS (Estimated):
00:00 - Welcome back and reintroducing Pete Wharmby

02:30 - Recap of what we covered in episode 45 and why transitions affect all neurodivergent kids

06:10 - Screen time, flow states and Pete's oil tanker analogy

16:45 - The role that monotropism plays in transitions

27:00 - Strategies: lead-In Times, choice and routines

36:40 - Understanding how PDA affects transitions and why it’s not just defiance

46:00 - Strategies for control-driven transitions (e.g. declarative language)

55:30 - Difficulty throwing stuff away: fridges, crocs and clinging to familiarity

1:04:30 - Schools as the perfect storm of transitional triggers

1:15:20 - The positives

1:18:00 - Neurodiversity Champions

1:20:40 - Tiny Epic Wins

1:23:15 - "What the flip?" moments

1:26:00 - Wrap-up and thanks

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LINKS TO STUFF WE MENTION IN THIS EPISODE:
Pete Wharmby website - https://petewharmby.com/

Untypical by Pete Wharmby - https://amzn.eu/d/8gGK6v4

What I Want to Talk About, by Pete Wharmby - https://amzn.eu/d/6tY0kZQ

What is monotropism? - https://www.autism.org.uk/advice-and-guidance/professional-practice/what-is-monotropism

Last One Laughing - https://en.wikipedia.org/wiki/LOL:_Last_One_Laughing_UK

Ausome Training, Cothu course - https://ausometraining.com/cothu-with-pete-wharmby

Declarative language - https://lifeskillsadvocate.com/blog/declarative-language-for-neurodivergent-communicators/

Anna Freud - https://www.annafreud.org/

Georgia Pavlopoulou (LinkedIn) - https://www.linkedin.com/in/dr-georgia-pavlopoulou-651a042a

Neuro Nook Storytime - https://www.neuronookstorytime.com/

Bedknobs and Broomsticks - https://en.wikipedia.org/wiki/Bedknobs_and_Broomsticks

Silksong - https://en.wikipedia.org/wiki/Hollow_Knight:_Silksong

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CONTACT US
🌐 Website: www.neuroshambles.com

📧 Email: [email protected]

📸 Instagram: @neuroshambles

🎵 TikTok: @neuroshamblespod

📘 Facebook: Neuroshambles

🧵 Threads: @neuroshambles

⸻

CREDITS
🎶 Theme music by Skilsel on Pixabay