16 Dec 24

Connecting Autism, Hypermobility and Advocacy – Insights from Jane and Ollie

In this blog post Jane, MBE, founder of SEDSConnective, and Ollie, a member of the AYE Panel, explore the challenges, triumphs and advocacy needed to improve understanding and support for individuals with overlapping neurodivergent and connective tissue conditions.

Navigating life as a neurodivergent individual with complex health challenges can feel isolating, but it doesn’t have to be. Ollie, a passionate autistic young expert and Jane Green MBE, founder of SEDSConnective, the foremost neurodivergent and hypermobility charity, offer insights into the unique intersection of autism and Hypermobile Ehlers-Danlos Syndrome (hEDS), Hypermobility Spectrum Disorder (HSD) and Generalised Joint Hypermobility (GJH).

Their experiences shed light on the gaps in awareness, the fight for recognition, and the ongoing work to create a more inclusive future for all.

Ollie’s Perspective: An Autistic Young Expert

I’m autistic and have symptomatic hypermobility (formally known as EDS, HSD or JH), which impacts my life in so many interconnected ways. Securing my diagnoses and the necessary support was a hard-fought journey for me and my family. I’m passionate about learning, especially maths and art, and aspire to become a teacher to help schools become safer and more inclusive for children like me.

Why is the connection between autism and hypermobility so under-recognised?
Jane explains that historical stereotypes about autism are partly to blame. For years, autism was mischaracterised as primarily affecting young boys with pronounced traits, which left little room to explore its diverse presentations. Symptomatic hypermobility (EDS HSD or paediatric types) likely have connective tissue structure which is different compared to the general population.

If diagnosed with hEDS more than 80% are likely to be female (NB). Males are less likely to be diagnosed due to the strict criteria but probably are symptomatic hypermobile. Highlighting the importance of raising awareness among healthcare providers and educators.

Advocacy through charities like SEDSConnective can help individuals access better support and amplify understanding of this brain-body connection. The connective tissue structure is different for a person with hypermobility compared to the general population.

How do you feel about the term "disabled"?
Language preferences vary across individuals, but Jane shares her perspective: while she uses terms like “disabled” or “chronically ill,” she emphasises free choice for individuals to use terms they feel most comfortable with. Advocacy is essential to validating the real medical challenges individuals face.

What challenges exist for autistic women seeking diagnoses and support?
Ollie and Jane highlight how autistic women often mask their struggles to avoid judgment. Jane recounts being dismissed for years as a “hypochondriac” or “dim.” She wasn’t diagnosed with hypermobility or being autistic until her 50s, and even then, there was no support. This is a common story for many autistic women, who are frequently misdiagnosed or remain undiagnosed due to systemic biases.

How do you manage fatigue while living a busy life?
Fatigue from hypermobility can feel like being weighed down by cement, Jane says. Effective pacing is crucial but challenging in practice. Through her advocacy work at SEDSConnective, she shares strategies to help others manage energy and minimise exhaustion.

Jane’s Perspective: Founding SEDSConnective

What inspired SEDSConnective, and how has it grown?
Jane founded SEDSConnective in 2018 to address the needs of neurodivergent individuals with symptomatic EDS HSD. Starting with no funding and few resources, her determination transformed it into a globally recognised charity.

What are SEDSConnective’s biggest achievements, and what’s next?
SEDSConnective’s milestones include winning awards and offering critical support during the COVID-19 pandemic. The charity’s greatest achievement however, lies in staying true to its vision: a community charity, offering belief and tangible support for neurodivergent individuals with hypermobility and empowering its members so future generations do not suffer as previous ones did.

Looking forward, Jane aims to expand their impact across education, healthcare, and policy to create lasting change.

Ollie and Jane’s stories highlight the challenges and triumphs of navigating life at the intersection of autism and hypermobility. From the systemic barriers that delay diagnoses to the fight for recognition and support, their experiences emphasise the importance of advocacy, community, and education.

SEDSConnective is a shining example of what can be achieved when lived experience drives change. By fostering awareness and offering resources, the charity is paving the way for a future where neurodivergent individuals with co-occurring evidence-based conditions or rather EDS HSD Joint hypermobility and associated conditions like POTS, MCAS and IBS can thrive.

Jane Green MBE, is a trailblazer in neurodivergent and disability advocacy, with a distinguished career in education and charity leadership. As the founder and chair of SEDSConnective, a pioneering charity supporting neurodivergent individuals with Symptomatic hypermobility (EDS HSD) and related conditions, Jane has transformed awareness and care for these often-overlooked communities.

Despite being dismissed as "dim" in her youth and facing lifelong health challenges, Jane pursued education later in life, earning qualifications in psychology, child development, and teaching. She became an accomplished secondary and special needs educator, a Local Authority Advisory teacher, and a leader in national autism education initiatives like the Autism Education Trust and National Autistic Society.

Beyond education, Jane serves as a Non-Executive Director for several organisations, contributes to policymaking, and co-authored the first peer-reviewed paper on neurodivergence and occurring health conditions. She regularly speaks at global conferences and advocates for inclusive systems in education and health and was awarded an MBE for this voluntary advocacy in 2023.

Learn more, support SEDSConnective’s mission, or get involved:

SEDSConnective