NEWS, VIEWS AND UPDATES
RECAP
Feeling overwhelmed by complex research in education, child development, and parenting? RECAP simplifies it. We're a UK-wide organization providing accessible, research-backed information and support for families, businesses, and charities. Think of us as your one-stop shop for practical tools and insights through our Hub, podcast, literature, training, and consultancy, empowering you to make a real difference.
Lucie Wheeler – Bridging Research and Real Life in Education 🌟
Lucie Wheeler is a passionate advocate for inclusive, informed, and family-centred education. A Research Assistant in the School of Education and a PhD candidate at Anglia Ruskin University, Lucie’s academic work focuses on home and alternative education, but her mission goes far beyond the university walls.
With over 12 years of hands-on experience in nurseries, primary schools, and special education settings, Lucie has held both practitioner and leadership roles, giving her a rich, practical understanding of early childhood development and inclusion. Her academic credentials — a BA (Hons) in Child Development and an MA in Early Years Education — are powerfully complemented by her lived experience as both a parent and a home educator.
In 2023, Lucie founded RECAP Ltd, a project that began as a free information-sharing initiative and has since grown into a trusted, research-informed support and resource hub for families and professionals alike.
Under Lucie’s leadership, RECAP is committed to:
- Empowering parents and carers with accessible, evidence-based guidance that supports every stage of a child’s learning and development.
- Connecting families and research, translating academic findings into real-world support that can genuinely improve lives.
- Supporting small and medium-sized businesses and charities offering valuable, family-focused services and resources.
- Breaking down barriers between research and lived experience — ensuring that what’s learned in theory can be applied in everyday life.
Lucie’s work is a shining example of what happens when academic rigour meets grassroots understanding. She’s building a future where research isn’t just published, it’s practically useful, deeply human, and shared with those who need it most.
We’re proud to spotlight Lucie and RECAP as part of our Featured section — making a difference, one family at a time. 💜
👉 Learn more at: www.recapinfo.co.uk
news, views and updates
Autism and Epilepsy: Nic’s Story
Nic was diagnosed as autistic in her forties but has been living with epilepsy for over ten years. Her experience is a powerful reminder that autistic women are often diagnosed late, and that autism frequently co-occurs with other neurological conditions like epilepsy.
Epilepsy and autism have a complex relationship. Around 12% of autistic people also have epilepsy, and the co-occurrence is more common in women and girls. Conversely, around 6% of people with epilepsy are also autistic, with a higher prevalence in men and boys. One of the strongest predictors of a dual diagnosis is the presence of a learning disability—but this isn’t always the case.
For Nic, navigating both conditions comes with unique challenges, especially as she continues to explore and understand her autistic identity later in life.
Nic says it’s often difficult to tell whether a particular experience is due to autism, epilepsy, or the interaction between the two. Here are some of the realities she lives with every day:
Sensory overload and noisy environments
Nic struggles in noisy places because she can’t filter out background sounds or follow a single conversation in a crowd. This difficulty has intensified over time. She’s unsure whether this is sensory overload from autism or a result of temporal lobe damage from epilepsy, or both.
Need for predictability
Like many autistic people, Nic finds uncertainty extremely stressful. When she has hospital appointments or procedures, she researches every detail in advance—even watching surgeries online—so she knows what to expect. Not knowing what her hospital room will look like, how she’ll get there, or what will happen can be deeply distressing.
Travel and unfamiliar places
New environments and sensory-rich settings are especially overwhelming. They can trigger both seizures and autistic meltdowns. Nic explains that she has no more control over a meltdown than she does over a seizure—they just happen.
Social exhaustion and work stress
Social interactions and meetings took a significant toll. For Nic, stress and fatigue are well-known seizure triggers. She often experienced seizures during meetings at work, highlighting how hard it can be to manage health in professional settings.
Emotional impact of seizures
Pre- and postictal mood swings (those that occur before and after a seizure) are common. These emotional shifts are often intensified by sensory overload or social demands, creating layers of stress that are difficult to untangle.
Medication side effects
Nic takes sertraline to help manage the emotional lows associated with her epilepsy. Her seizure medication also causes intense fatigue—she often needs to rest in the afternoon and sleeps 9–10 hours per night. Although she’s not sure whether it’s an autistic trait, she finds it frustrating that she can’t stay active and busy all day.
Meltdowns and seizures: a vicious cycle
It’s not uncommon for Nic to have a meltdown just before a seizure. She describes a difficult feedback loop: the emotional state that precedes a seizure makes her more vulnerable to overwhelm, and the distress of a meltdown can in turn trigger a seizure.
A Unique and Overlapping Experience
Nic’s story is a powerful reminder that autism doesn’t exist in a vacuum. For some people, especially women who are diagnosed later in life, autism interacts with other neurological conditions in ways that are difficult to separate. The boundaries between what is “autistic” and what is “epileptic” often blur.
Complex, intersecting experiences like Nic’s need to be shared. Her story adds to our understanding of how autism and epilepsy can co-exist and inform each other—and how the healthcare system, workplaces, and society at large need to do better at recognizing and supporting those living with both.
🔗 Read more about Nic’s story on the Epilepsy Action website.
If you have a story to share about life as an autistic woman, with or without co-occurring conditions, we’d love to hear from you. You’re not alone—and your voice matters.
News, views and updates
A Small Step Forward: Channel 5’s ‘Are You Autistic?’
I approached Channel 5’s documentary Are You Autistic? with some hesitation. Like many autistic viewers, I’ve learned to brace for oversimplifications, stereotypes, or language that simply misses the mark.
This time, though, I was (cautiously) surprised.
The programme, hosted by neurotypical GP Dr Claire Taylor, set out to explore what autism really looks like today. Refreshingly, all the featured contributors, apart from the host, were autistic, and several were researchers in the field, including Dr Hannah Belcher and Dr Damian Milton, along with Professor Francesca Happé who has recently some to terms with her own autistic identity. Their voices brought nuance to topics often flattened in public conversation: masking, sensory differences, empathy (or rather, the lack of reciprocal empathy), and the toll of being misunderstood.
There was a clear effort to use neuroaffirmative language — a shift that matters. The documentary tackled the diagnostic criteria (DSM-5/ICD-11), exploring social communication differences, sensory sensitivity, repetitive behaviours, and stimming. It also tried to distinguish between autistic traits and the broader pattern that forms an autistic identity.
Importantly, it addressed the staggering diagnostic backlog: 170,000 people currently on the waiting list. The cause? Greater awareness, yes, but also a system struggling to adapt to that awareness.
Several autistic individuals shared their lived experience. Most were diagnosed late in life, and many expressed the grief and relief that comes with that realization. It was good to see more representation from women and people of colour. But significant gaps remained: the documentary did not include autistic people with learning disabilities, nor did it explore gender or sexual diversity — key aspects of our community.
Still, this felt like progress. For once, I didn’t finish watching with a knot in my stomach. No documentary will ever capture the full picture of autism, but this one gave more space to autistic voices, and fewer to harmful myths.
That alone makes it a step forward.
Watch here:
epilepsy and autism: when conditions collide
Claudia talks about living with epilepsy and autism
Epilepsy co-occurs with autism and can be part of a person's complex needs profile. On Epilepsy Action, Claudia talks about what life is like being an autistic person with epilepsy.
Read the full article here: https://www.epilepsy.org.uk/news/epilepsy-and-autism-what-its-like-when-conditions-collide