Understanding Autistic Burnout
Autism Is Genetic: A Welcome Statement from the NAS
The National Autistic Society (NAS) has recently reinforced something many of us in the autistic community, including autistic women, have long known: autism is a genetic condition.
Research has pointed in this direction for years, but it is important to see the NAS clearly acknowledge the evidence. For many families, this will feel familiar. When one person receives an autism diagnosis, other family members often begin to recognize similar traits in themselves. Sometimes a parent, grandparent, sibling, aunt, or uncle starts their own journey of discovery, reflecting shared neurodivergent experiences within the family.
That was certainly true in my family. When I received my autism diagnosis at the age of 54, some extended family members had already been diagnosed.
Autistic and neurodivergent people are often drawn to one another because of shared ways of thinking, communicating, and experiencing the world. It is therefore not surprising that autistic children frequently come from families where neurodivergent traits are already present.
Autism is present from birth. It is not something that develops later in life. Scientists believe that thousands of genes are involved, and research continues to identify more of them.
Some studies also suggest that autistic traits may have offered advantages throughout human history. Traits such as intense focus, pattern recognition, creativity, and attention to detail may have contributed to human development and survival over generations.
The NAS statement helps to challenge the misinformation still being spread about autism. There is no credible evidence that autism is caused by vaccines, parenting styles, or medications such as paracetamol.
Autistic people are not broken or damaged. We are part of the lovely diversity of human beings, and our differences have always been part of the human story. In addition, many autistic individuals, especially autistic women, may experience conditions such as seasonal affective disorder, highlighting the need for understanding and support within the broader narrative of neurodiversity.
participants needed
Take part in this research project!
Recruiting now: autistic women who are cisgender and aged 18+ for a study exploring neurodivergent experiences related to camouflaging behaviours.
Issabel Bailey is an autistic postgraduate researcher at The University of Salford, currently seeking participants for her MSc by Research study that delves into the lived experiences of camouflaging behaviours among autistic women.
Study details:
- Participants: Autistic cisgender women aged 18+
- Method: Remote interview via Microsoft Teams
- Duration: Approximately 1 hour 10 minutes
- Focus: Personal experiences with camouflaging behaviours and how they relate to daily life, including the impact of issues such as seasonal affective disorder.
This research aims to amplify the voices of autistic women and enhance understanding of their neurodivergent experiences with camouflaging.
For more information, please see the poster below or contact Issabel at i.m.bailey1@edu.salford.ac.uk
NEWS, VIEWS AND UPDATES
Navigating your journey as an autistic person of a marginalized gender is a nuanced experience. Recent research demonstrates that individuals who identify as gender diverse, including non-binary and transgender individuals, are approximately 3 to 6 times more likely to receive an autism diagnosis compared to their cisgender peers. Interestingly, many autistic young people report higher rates of non-binary or gender-incongruent identities or expressions than those who are neurotypical. This gender diversity—being trans, non-binary, or gender-questioning—is notably more prevalent among autistic populations than in the general population.
A recent study found that there is a higher prevalence of autistic traits among transgender and gender-diverse (TGD) adults, particularly pronounced among individuals assigned female at birth (AFAB) and those who identify as non-binary or gender-queer (NBGQ). For instance, 46.2% of NBGQ adults in the TGD sample scored above the clinical cutoff on the Social Responsiveness Scale for Adults (SRS-A), in contrast to 27.6% of binary transgender adults and 15.1% of cisgender adults.
Many autistic women, non-binary, or transgender individuals often receive their diagnosis later in life or may self-diagnose. This phenomenon is largely due to traditional diagnostic tools and societal expectations being predominantly tailored toward a male, cisgender autistic ‘prototype’. Consequently, the intersection of being neurodivergent and identifying with a marginalized gender influences the diagnostic experience and the journey toward self-understanding.
Awareness surrounding masking, identity disclosure, self-advocacy, and the necessity for support becomes especially vital when navigating these neurodivergent experiences. Additionally, individuals may find themselves coping with emotional challenges, such as seasonal affective disorder, which can further complicate their journey. For more resources and support regarding intersectionality, please visit the RESOURCES section and scroll down to INTERSECTIONALITY.
NEWS, VIEWS AND UPDATES
🌟 Welcome to N.E.R.D.S.
A Discord-based community by and for neurodivergent researchers — a space to share ideas, find support, and just be yourself.
N.E.R.D.S. was created by two neurodivergent researchers, Aimee Shepherd and Sarah Jane Nuttall, after they reached out to one another during a time of isolation and realized just how much they needed a space like this — and how many others might, too.
We know that being neurodivergent means our communication and social needs can differ. N.E.R.D.S. is here to offer connection on your terms.
🔗 Join us via the link: https://discord.com/invite/d4YnEH4f
Whether you’re autistic, ADHD, dyslexic, or otherwise neurodivergent — or you're still figuring it out — you are welcome.
Let’s build community. Let’s rewrite the norms of academic spaces. Together.
PLEASE SHARE AS WIDELY AS POSSIBLE.
NEWS, VIEWS AND UPDATES
Do you identify as an autistic woman or a neurodivergent researcher? Or perhaps you know someone who shares these neurodivergent experiences? Join us on Discord to connect and share your thoughts, especially during challenging times like seasonal affective disorder.
🌟 Welcome to N.E.R.D.S.
A Discord-based community by and for neurodivergent researchers — a space to share ideas, find support, and just be yourself.
N.E.R.D.S. was created by two neurodivergent researchers, Aimee Shepherd and Sarah Jane Nuttall, after they reached out to one another during a time of isolation and realized just how much they needed a space like this — and how many others might, too.
We know that being neurodivergent means our communication and social needs can differ. N.E.R.D.S. is here to offer connection on your terms.
🔗 Join us via the link: https://discord.com/invite/d4YnEH4f
Whether you’re autistic, ADHD, dyslexic, or otherwise neurodivergent — or you're still figuring it out — you are welcome.
Let’s build community. Let’s rewrite the norms of academic spaces. Together.
PLEASE SHARE AS WIDELY AS POSSIBLE.
NEWS, VIEWS AND UPDATES
RECAP
Feeling overwhelmed by complex research in education, child development, and parenting, especially when considering the unique needs of autistic women and other neurodivergent experiences? RECAP simplifies this for you. 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, including support for those grappling with seasonal affective disorder.
Lucie Wheeler – Bridging Research and Real Life in Education 🌟
Lucie Wheeler is a passionate advocate for inclusive, informed, and family-centred education. As 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. Her mission extends beyond academia, particularly in understanding the diverse needs of neurodivergent experiences, including those of autistic women.
With over 12 years of hands-on experience in nurseries, primary schools, and special education settings, Lucie has held both practitioner and leadership roles. This background has given her a rich, practical understanding of early childhood development and inclusion. Her BA (Hons) in Child Development and her MA in Early Years Education are powerfully complemented by her lived experience as both a parent and a home educator, allowing her to connect deeply with families affected by seasonal affective disorder and other challenges.
In 2023, Lucie founded RECAP Ltd, which started as a free information-sharing initiative and has evolved into a trusted, research-informed support hub for families and professionals alike.
Under Lucie’s leadership, RECAP is dedicated to:
Empowering parents and carers with accessible, evidence-based guidance that supports every stage of a child’s learning and development, including those navigating neurodivergent experiences.
Connecting families with research by translating academic findings into practical support that can significantly improve lives, particularly for autistic women.
Supporting small and medium-sized businesses and charities that offer valuable, family-focused services and resources.
Breaking down barriers between research and lived experience — ensuring that theoretical knowledge can be applied in everyday life, especially for families dealing with seasonal affective disorder.
Lucie’s work exemplifies what occurs when academic rigor 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 highlights the reality for many autistic women, who are often diagnosed late, and emphasizes how autism frequently co-occurs with other neurological conditions like epilepsy.
The relationship between epilepsy and autism is complex. Approximately 12% of autistic individuals also experience epilepsy, a co-occurrence that is more common among women and girls. On the other hand, around 6% of those with epilepsy also identify as autistic, with a higher prevalence noted in men and boys. One of the strongest indicators of a dual diagnosis is the presence of a learning disability, though this isn't always the case.
For Nic, navigating both conditions brings unique challenges, particularly as she further explores and understands her neurodivergent experiences later in life.
Nic often finds it challenging to determine if a specific experience stems from autism, epilepsy, or their interaction. Here are some of the realities she faces daily:
**Sensory overload and noisy environments**
Nic struggles in noisy places due to her inability to filter out background sounds or follow conversations within a crowd. This challenge has become more pronounced over time. She’s uncertain whether this issue arises from sensory overload linked to autism, the result of temporal lobe damage from epilepsy, or a combination of both.
**Need for predictability**
Much like many autistic women, Nic finds uncertainty to be extremely stressful. Before any hospital appointments or procedures, she researches every detail—even watching surgeries online—to alleviate her anxiety around the unknown. Not knowing what her hospital room will look like or what will happen can be deeply distressing.
**Travel and unfamiliar places**
New environments and sensory-rich settings can be especially overwhelming. They often trigger both seizures and autistic meltdowns. Nic explains that she has no more control over a meltdown than she does over a seizure—they simply occur.
**Social exhaustion and work stress**
Social interactions, such as work meetings, are particularly draining for Nic. Stress and fatigue are well-known triggers for her seizures, which makes it difficult to manage her health in professional settings as she frequently experiences seizures during meetings.
**Emotional impact of seizures**
Pre- and postictal mood swings—those that occur before and after a seizure—are common for Nic. These emotional fluctuations can be intensified by sensory overload or social demands, creating layers of stress that can feel challenging to navigate.
**Medication side effects**
To manage the emotional lows connected with her epilepsy, Nic takes sertraline. Her seizure medication also induces significant fatigue, requiring her to rest in the afternoon and sleep around 9–10 hours each night. She often finds it frustrating that she cannot remain active and busy throughout the day, which may be related to her autistic traits.
**Meltdowns and seizures: a vicious cycle**
It’s not uncommon for Nic to experience a meltdown just before having a seizure. She describes this as a difficult feedback loop: the emotional state leading up to a seizure increases her vulnerability to overwhelm, while the distress from a meltdown can subsequently trigger a seizure.
**A Unique and Overlapping Experience**
Nic’s story serves as a powerful reminder that autism does not exist in isolation. For many, especially women diagnosed later in life, autism interacts with other neurological conditions in ways that are challenging to differentiate. The boundaries between what is attributed to autism and what is due to epilepsy often intertwine.
Complex, intersecting experiences like Nic’s deserve to be shared. Her story enhances our understanding of how autism and epilepsy can coexist and influence one another—and underscores the need for the healthcare system, workplaces, and society to better recognize and support individuals who live 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, including notable autistic women such as Dr Hannah Belcher and Dr Damian Milton, along with Professor Francesca Happé who has recently come 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 — especially in relation to neurodivergent experiences like seasonal affective disorder.
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 experiences. 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 individuals 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 often co-occurs with autism, particularly in autistic women, and can be part of a person’s complex needs profile. On Epilepsy Action, Claudia discusses the unique neurodivergent experiences of living as an autistic person with epilepsy, and how these challenges can be further complicated by conditions like seasonal affective disorder.
Read the full article here: https://www.epilepsy.org.uk/news/epilepsy-and-autism-what-its-like-when-conditions-collide