Why Autism policy must address hypermobility EDS, Autism ACT 2009: Response to Government Committee

SEDSConnective Exposes Critical Gaps in Autism Policy

SEDSConnective's submission and evidence to the Parliamentary Committee reviewing the Autism Act 2009 has now been published, revealing a critical gap in current autism policy that is causing real harm

While discussions continue to centre almost exclusively on social, emotional, mental health and behaviour, they ignore a fundamental reality: countless autistic people live with physical health conditions that affect both body and brain and these are being systematically overlooked

RESEARCH- Research demonstrates a strong and well-established link between autism and conditions such as Ehlers-Danlos Syndromes (EDS) and Hypermobility Spectrum Disorders (HSD) in adults. Yet symptoms including pain, fatigue, gut issues and joint instability are too often dismissed as anxiety or behavioural problems. What professionals fail to recognise is that anxiety itself can be physiological, a direct result of connective tissue differences affecting the autonomic nervous system not only a psychological issue to be managed through behaviour support alone.

Misattribution: The Harm It Causes

This misattribution is not just inconvenient it is harmful. Dismissing physical symptoms delays diagnosis and treatment, causing unnecessary suffering.

Despite significant investment in social, emotional and mental health support, outcomes for autistic and other neurodivergent children have not improved. Since COVID-19, they have worsened.

Children who are autistic, ADHD, dyspraxic, dyslexic, have Tourette's or connective tissue differences linked to hypermobility have been especially affected. Yet their physical realities remain invisible within autism policy and practice.

The EBSA/NA Problem

Children who are physically unwell are frequently labelled as anxious or school avoidant under Emotional Based School Avoidance (EBSA). When they report pain or struggle to sit still, they are seen as having behaviour problems.

Imagine being a child in pain that adults don't believe. Frustration builds. They lash out and are labelled disruptive, or they internalise it. Most remain undiagnosed because teachers and doctors do not know what to look for, or their distress is misinterpreted as EBSA/NA rather than recognised as a physical co-occurring health issue with neurodivergence.

The Safeguarding Crisis

For parents, the stakes are even higher. When professionals fail to recognise that these conditions are heritable, physical symptoms can trigger safeguarding investigations. Families find themselves wrongly suspected of abuse when their child has an undiagnosed connective tissue disorder.

The Gender Gap

Girls and women face particular discrimination because hormones profoundly affect connective tissue. During menstrual cycles, pregnancy and menopause, hypermobility symptoms worsen, bringing increased joint instability, clumsiness, pain and fatigue.

Yet this reality is completely ignored. Women are penalised at work due to caring responsibilities or during pregnancy and perimenopause, with disability symptoms treated as performance issues. What we often call "burnout" is, in many cases, physical chronic exhaustion from untreated hypermobility-related conditions. This also affects those in work but struggling to continue due to unmet needs.

The publication of our evidence means SEDSConnective has secured a direct voice within formal policy scrutiny processes. Our data, expertise and lived experience of hypermobility, autism / ADHD and wider neurodivergent health inequalities are now part of the evidence base being considered by policymakers and the Committee.

The Path Forward

Our evidence is now on the record. It will inform parliamentary scrutiny, shape policy recommendations and challenge the current paradigm that treats neurodivergent health from stereotypical perspectives. We need sustained pressure, continued advocacy and the courage to challenge systems that are failing neurodivergent individuals with symptomatic hypermobility whether formally diagnosed with EDS, HSD or paediatric types or without but living with chronic pain, hormone changes, chronic fatigue, allergies, gastrointestinal issues, virus diagnoses or crossover autoimmune conditions. It will also help those with these health issues but realising they might be neurodivergent too.

If you are a parent who has fought to have your child's pain taken seriously, you are not alone. If you are an autistic or neurodivergent adult whose physical symptoms have been dismissed as anxiety or 'all in your head' your experience matters. If you are a professional who has witnessed these gaps firsthand, your voice is needed. The publication of this evidence is a milestone, but it is only the beginning. Real change will come when physical health is no longer an afterthought in neurodivergent care, when people are believed, and where you receive the support you desperately need.

Why It’s Important for SEDSConnective to Contribute to this Policy

SEDSConnective is a user-led charity. Our evidence is grounded in lived experience, our professional expertise, community engagement and emerging research.

We represent a significant cohort across Early Years, Education, Health, Care, Employment / Business and older age. Without our contribution:

• Misdiagnosis and harm across the lifespan - Physical symptoms (pain, fatigue, dysautonomia, anxiety, burnout) will continue being mislabeled as anxiety or behavioral issues, leading to inappropriate treatment, delayed care and worse health outcomes including earlier death for autistic people.

  Our community's complex needs risk being misunderstood or overlooked entirely

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• Children excluded and traumatised - Physically unwell autistic children will keep being seen as "school-avoidant" or having behavioural problems, leading to safeguarding issues, educational exclusion and lifelong emotional damage from being disbelieved when in pain.

  
  

• Pushed out of education and employment - Adults struggle to enter, remain in, or return to employment. For women, hormonal impacts on hypermobility (puberty, menstruation, pregnancy, menopause) will remain unrecognised, resulting in capability dismissals and exclusion rather than proper adjustments, with "burnout" misunderstood as mental health rather than physical exhaustion

  
  

• Fragmented healthcare and wrong interventions - The body-brain divide persists with no clarity on where hypermobility sits in the health system, while funding flows to mental health programs that don't address physical root causes, leaving people trapped or invalidated.

  
  

• Policy failures continue - Autism strategies, NICE guidance and statutory frameworks will keep excluding physical health conditions, using outdated terminology, lacking connections and missing the voices of those with lived expertise in the autism-hypermobility neurodivergence connection

  
  

• Underdiagnosis persists with serious consequences - Women, older adults and ethnic minorities will continue being missed by biased diagnostic tools and cultural barriers, with undiagnosed autistic people facing worse health, disability, chronic illness and earlier death, while debates about overdiagnosis mask decades of past disbelief and delays

Contributing to this inquiry allows us to shape national reform so it reflects real experiences, not assumptions. This demonstrates that SEDSConnective is engaging at a national policy level and making significant progress in ensuring our members are heard.

As the user-led charity for people with hypermobility conditions (including EDS, HSD, POTS, dysautonomia, MCAS, ME/CFS, Long COVID, and fibromyalgia) and neurodivergence (including autism, ADHD, dyspraxia, dyslexia, dyscalculia, and Tourette's), we specifically address the experiences of those living with these conditions whether diagnosed or not at all stages of life. We particularly focus on the overlapping experiences of autistic people with hypermobility.

SEDSConnective was created to meet unmet needs, and we will continue to ensure that the voices of our community shape the national agenda.

Read our written evidence submissions here:

• https://committees.parliament.uk/writtenevidence/142379/html/

• https://committees.parliament.uk/writtenevidence/142379/pdf/

You can find us at www.sedsconnective.org