SEDSConnective – Written Evidence (AAC0201)
1a) Current estimates say about 1 in 100 people in England are diagnosed autistic, but this likely understates the true number. Autism was once thought to be far more common in boys, but evidence now shows many girls and women were missed due to biased tools and outdated views. Cultural attitudes also delay diagnosis in some communities. Undiagnosed autistic people face worse health and earlier death, showing a need for system change.
Awareness and diagnosis are improving, especially for women, older adults, and ethnic minorities. While official rates stay near 1 in 100, the true number is higher. Some say overdiagnosis, but SEDSConnective and advisers link this to past disbelief and delays. More NHS diagnosticians and less stigma are making diagnoses fairer and more accurate.
2 a)
Autistic people need public services that address both physical and mental health, with policies shaped by lived experience and research on co-occurring conditions like hypermobility. Key issues include access to informed healthcare, inclusive education, and support across the lifespan. We believe as asked many times where hypermobility sits whether in neurology, rheumatology, MSK, cardiology or other health policy group. We say all whole bodybrain. We are asking for a national centre with expertise from leading charities connecting Autism and hypermobility (informal terminology) here.
b) Over time, there is growing awareness of the link between neurodivergence and physical health, but policy has been slow to catch up. Lived experience and user-led research are pushing for change, yet many remain excluded from decision-making.
3 a) Physiology often misattributed to mental health alone, delaying care. Despite a decade of robust research. We need integrated policy covering birth to death, with education, health, science, care and employment joined up in one national body. This should be led by a specialist or champion with proven experience
3b) Policy must now recognise charities like ours, leading this work, to ensure lives are not just supported but saved through better health, care, education, employment, and economic outcomes We need integrated policy covering birth to death, with education, health, science, care and employment joined up in one national body. This should be led by a specialist or champion with proven experience
4a) The autism strategy overlooks important physical health issues like pain and sleep that affect education, work, and wellbeing. These must be fully included. Organisations with real experience and knowledge should lead change.
b) The Government must fund research and services that connect body and mind, especially for conditions like Ehlers-Danlos syndromes and dysautonomia. User-led groups with lived experience should be supported, and a wider range of autistic voices must be included.
5 a) Since 2009, the Autism Act and related strategies have aimed to improve support, but progress is limited. Key initiatives like NICE guidance and OMMT often overlook the full lived experience of autistic people, excluding physical conditions like hypermobility, fatigue, pain, and dysautonomia. Terminology is outdated, and important physiological issues are ignored or stereotyped.
b) The Government must involve autistic-led charities with deep expertise, use accurate terminology, and ensure co-occurring physical health is integral to training and service design. Without this, strategies will continue to fall short.
6. a) The statutory guidance has been limited in effectiveness. It lacks enforcement, overlooks co-occurring physical health like hypermobility, and is poorly understood in practice.
b) NHS and local authorities are inconsistent in meeting duties. Implementation varies by area, with gaps in training, terminology, and inclusion of lived experience.
c) Make guidance mandatory, updated with accurate neurodivergent health content, including physical health. Involve autistic-led organisations like SEDSConnective in co-production and monitoring.
7 A) Accountability is shared across national and local bodies, but they often work separately, exclude lived-experience charities like SEDSConnective, and ignore recommendations. For example, the OMMT board left out physical conditions like hypermobility despite our input, and training for psychology still misses co-occurring health needs.
b)To be effective, lived-experience groups must be properly funded and empowered to lead. Neurodivergent voices should be included in decision-making, psychology training must cover physical health, and expert champions from user-led groups need real power in statutory bodies.
8 a) The 2021–2026 Autism strategy covers key areas but lacks a deep, science-based understanding of autism. Our charity, SEDSConnective, built on decades of work, has raised concerns that have been ignored and is not included in decision-making. Policies led by a small group risk repeating mistakes. Education, health, care, employment, community, and justice are all affected by physical issues like hypermobility and pain, which are central to autistic experiences. Without this understanding, progress stays shallow. Autism-only groups do not represent all autistic people. Experienced organisations with proven records should lead for everyone's benefit.
b) The Government must fund research and services that connect body and mind, especially for conditions like hypermobility related conditions. User-led groups with lived experience should be supported, and a wider range of autistic voices must be included.
9a) Public understanding is still narrow, often based on surface views. Autism is seen mainly as a behaviour or speech issue, not as involving physical health, sensory needs, or the strain of dealing with hard-to-use systems. Health care access is a clear issue—appointments are often rushed or too much to manage. Many autistic people are treated as problems, not as patients needing tailored support. After bad care, many avoid help, leading to worse health and isolation.
9b)
Awareness is growing, especially among younger people and some in schools. Media is starting to reflect more real stories. Autistic-led groups and social media help share true lived experiences.
9c) How can public understanding and acceptance of autistic people be improved?
We need action, not just talk. All public-facing staff in health, travel, and schools should have training led by autistic people. Campaigns must show the full picture, including health and sensory needs. Services must be built to include everyone from the start, so support is fair and not a fight.
10a) What are the main problems with community inclusion for autistic people?
Community inclusion often fails to recognise the complexity of autistic lives. From pre-pregnancy health to domestic abuse, food and environmental allergies, co-occurring conditions, and caregiving responsibilities these factors create layers of exclusion. Many autistic people, particularly women and carers, are unable to participate fully in work, education, or social life, often due to long-term ill health and trauma. There remains significant stigma, particularly in Global Majority communities, where traditional views of autism persist, often tied to outdated stereotypes. Funding initiatives that rely on old models—focused on white, male, learning-disabled profiles—leave out most of our community. The system does not yet reflect the true diversity of autistic experience.
10b)
Some growing awareness in the media, especially through social platforms, is encouraging. User-led charities, especially those driven by lived experience, are beginning to challenge narratives and provide better support. There is increased visibility of younger autistic women, and more people are beginning to understand that autism intersects with other neurodivergent conditions such as ADHD, dyspraxia, and Tourette’s, as well as with physical conditions like EDS, HSD, and paediatric joint hypermobility ( pGJH)
10c) Community inclusion can be improved through co-produced solutions led by autistic and neurodivergent people, especially those often overlooked. Move beyond one size projects and fund user-led groups already making an impact. Sectors must work together, and media should show autism as lifelong and more than behaviour or social model with real stories from older autistic whole people children and adults. Inclusion means recognising lived reality, not just diagnosis.
11 a) Current autism pathways are fragmented and focus only on autism, missing wider neurodivergence and physical health issues. SEDSConnective supports multi-condition pathways, already in some NHS centres, but needing expansion. Diagnosis should screen for conditions linked to connective tissue differences, like ME/CFS, fibromyalgia, digestive issues, post-COVID, endocrine problems, and more. This approach would provide support at all life stages and reduce school absences wrongly labelled as unauthorised.
b) Strengths include growing public and clinical awareness of intersectional neurodivergence and the increasing inclusion of autistic voices in research and policy. Some good practices exist in isolated areas, including partnerships between user-led organisations and NHS research centres. There is increasing acknowledgement of the impact of lifelong and co-occurring conditions, but this has not yet translated into policy or widespread practice.
c) The main problems include long diagnostic waits, services that exclude those with co-occurring conditions, and dismissal of physiological symptoms as psychological or behavioural. Statutory systems often lack training and awareness around connective tissue disorders and multi-diagnosis presentations. Pathways are not yet inclusive of the broader neurodivergent population or the complexity of needs that span physical and mental health. Over-reliance on condition-specific charities and siloed services worsens trauma. Trusted, expert user-led charities, such as SEDSConnective, must be embedded into system design and delivery, regardless of whether 'autism' is in the name, to ensure inclusion for all genders, ethnicities, and co-occurring needs.
12. a) The Government must fund pathways covering autism and common co-occurring conditions like ADHD and hypermobility. Clinicians need training to recognize these together. Post-diagnosis support must include trusted user-led groups.
b) Support should focus on needs, not just diagnosis. Staff in education and health need training on overlapping physical and neurodevelopmental traits. Screening should be routine, and funding must go to proven user-led groups.
c) Support must link education, health, care, and work across life stages. Lifelong issues like pain and hormones must be recognised. Funding should back leaders and a whole-person autism champion to unite body and mind.
14a ) Autisitic people are more likely to be poor unless very well supported early to have a career and therefore more at risk of all health issues and also mental health. It is not the environment but statistically adolescents and young adults are more likely to be anxious (we think a new word is needed) or depressed 72-90% WHO ref. wherever they are located.
d) Understand that eating disorders are sometimes caused by misdiagnosis or diagnostically misattributing autism and eating disorders to mental health when they are probably physical in origin hypermobility pain , gastrointestinal entry exit issues but then lead to eating mental health disorders. In ref.
15. Social subscribing is inconsistent and often depends on knowing the right person. Our members report harm from unsuitable wellbeing classes like yoga, which can be damaging. Community-led support by experts is needed. We have a strong track record here.
Autistic health is too often siloed. Doctors may give easy labels like fibromyalgia, but referrals for hypermobility are now rejected. SEDSConnective supports practitioners with research and events, showing fibromyalgia, ME, IBS, postCovid, PTSD, pain, and endometriosis often link to hypermobility. Anxiety and depression can also stem from this, not just mental health.
There’s little voice in NICE and other groups, who exclude physical aspects of hypermobility. We need to lead, as we did with the autism peer project in NHS England, which was promising but stopped. A charity with expertise should be funded to support people before and after diagnosis.
Autism alone should not define this work. We use the term neurodivergence health. Expert-led toolkits for GPs and rheumatology are vital, as is more research into neuroscience and body systems.
16a) Key issues: attendance, attainment, inclusion, belonging, safeguarding, SEND provision. Despite decades of effort, data hasn't improved and since Covid, things worsened. PostCovid symptoms aren't solely mental health related; research shows neurodivergent children particularly those with Autism, ADHD, and connective tissue differences are around 30% less likely to recover from post-Covid illness. These symptoms mirror those already experienced by many with hypermobility conditions, yet most children remain undiagnosed due to lack of awareness among clinicians and educators.
This lack of understanding means autistic children are often physically unwell but mislabelled as anxious or school-avoidant. Issues include dizziness, dysautonomia, gastrointestinal distress, pain, difficulties with chewing or toileting, palpitations, and sensory dysregulation all affecting their ability to attend and participate in school. Autistic girls particularly in secondary age are affected but always put down to secondary schools only. This is hormonal and we explain why it affects them and increases hypermobility symptoms explained before. Emotional dysregulation is often result of interoceptive and proprioceptive challenges, not just behaviour or unmet need. Breathing difficulties, allergies (eczema, rhinitis, MCAS), and pain from inflammation are also frequently overlooked, though they significantly impact engagement, safeguarding, and mental health.
These aren't minor issues they're barriers to access and inclusion. Without recognising the physical basis of these challenges, autistic children are misrepresented in safeguarding systems, unsupported in learning, and misunderstood in their behaviours. A child disbelieved hurting in pain might lash out leading others to think they have behaviour issues; for others it causes lifelong emotional invalidation. For parents carers can cause unsubstantiated safeguarding issues due unprecedented body trauma without understanding of heritability.
Movement is key, pain worsens when sitting or stuck in one position and wise to use proprioception movement and strengthening. A specialised PE toolkit for hypermobility with SEDSConnective is being produced. A new school toolkit for neurodivergence and hypermobility should be funded and led by those who started the first one, Jane Green MA Ed. and SEDSConnective educating team. Only focusing on SEMH mitigates the physical and makes the child feel failure when it doesn't mainly work, hence the data despite other intentions.
16c) Funding mostly goes to mental health programs, often supporting those with vested interests. Teachers need expert help on neurodivergence and physical issues like pain and hypermobility, with a focus on the whole child and movement, not just mental health. This only masks pain not autism masking
17. Transitions rarely work due to funding issues. Social care too and understanding the physiology is key
We need schools and health services to work together to identify and support these children earlier particularly those with symptomatic hypermobility and to understand that body and brain are connected. Without that, education remains inaccessible for many autistic children and young people. Again understanding that for many the hormones are absolutely key and for autistic girls the physiology we have pushed on affects those in puberty but comes to the height around transitions times to adults until 23.
18 a)
Hormonal impacts on hypermobility completely ignored: Menstrual cycles causing increased joint instability, pain, and fatigue affecting attendance and performance
Worsening hypermobility during pregnancy leading to capability dismissals rather than proper adjustments
Misattributed "burnout" is often physiological exhaustion from untreated hypermobility-related conditions
b) Growing research recognition of autism-hypermobility link, with EDS individuals 7.4 times more likely to be autistic
c) Mandatory hormonal health screening during transition planning for autistic girls/women
Connective tissue assessments as standard in education-to-work transitions. Workplace adjustments for hormonal fluctuations affecting hypermobility. Training for transition professionals on autism-hypermobility-hormonal interactions from expert charities and innovators who have experienced this as well.
19 a) Autistic women are often dismissed during hormonal changes like puberty, pregnancy, and menopause, when hypermobility symptoms worsen. Conditions such as endometriosis, migraines, and fatigue are wrongly viewed as reliability issues, not disability related. Perimenopausal women face capability procedures as low oestrogen worsens connective tissue symptoms. Burnout is misunderstood as purely mental health, not physical exhaustion. Legal protections are weak, with hormonal impacts on hypermobility often unrecognised in disciplinary processes.
b)
Awareness of neurodivergence and discrimination law is growing, especially when correct terms are used. There’s some recognition of adjustment needs and early research is linking autism and hypermobility.
c) Hormones affect connective tissue in autistic women, with legal recognition of these symptoms as disability related. Employers and health professionals need training on autism’s physical aspects, with standard adjustments like flexible hours, ergonomic support, and medical leave to prevent avoidable exclusion.
22. The UK is leading the physiology (hypermobility and neurodivergence ) in the world with our expertise and advisers team. Working with neurological organisations in Europe not only with autism autistic in the name but the actual symptoms and problems we have. This is the bigger picture .
Under 3000 words.
SEDSConnective the hypermobility and neurodivergent user led charity.
2nd June 2025
References:
Donaghy, B., Moore, D., & Green, J. (2023). Co-Occurring Physical Health Challenges in Neurodivergent Children and Young People: A Topical Review and Recommendation. Child Care in Practice, 29(1), 3–21. https://doi.org/10.1080/13575279.2022.2149471
2022 https://doi.org/10.3389/fpsyt.2021.786916
2022 https://www.tes.com/magazine/teaching-learning/general/autism-5-adjustments-needed-your-classroom
2023 https://www.sedsconnective.org/post/understanding-hypermobility-disorders-syndromes-in-schools
2024 https://www.sedsconnective.org/post/new-study-hypermobility-and-emotions-are-linked-to-the-brain
2024 http://doi.org/10.1098/rstb.2023.0247
2024 https://doi.org/10.1136/bmjph-2023-000478
2024 https://www.bps.org.uk/psychologist/connective-issues
2024 https://www.bps.org.uk/psychologist/connective-issues