Capacity: Individual with a formal diagnosis of autism (since 2018), and campaigner for autism awareness and support. 2
Date of Submission: 15 June 2025 3
1. I received a formal diagnosis of autism in 2018, providing me with a unique lived experience of the Autism Act 2009 and the broader autism strategy4. From my perspective, the Act's effectiveness is significantly hampered by inconsistent implementation, a critical lack of public understanding, and severe underfunding of essential services, leading to a postcode lottery of support across the UK, especially in Wales where health, education, environment, and transport are devolved matters5. My campaigning efforts for the Wales Autism Bill 2019 6, alongside personal challenges such as the recent bereavement of my father over Christmas and the daily difficulties of life as an autistic person 7, have starkly highlighted these systemic gaps and inadequacies in current support systems. 8
2. The most critical recommendations I believe the Government should make are: Firstly, to drastically reduce unconscionable waiting times for autism diagnosis through substantial investment in diagnostic services and by adopting a "needs-led" approach to support, rather than "diagnosis-led," particularly in educational and social care settings999. Secondly, to implement mandatory, comprehensive, and ongoing autism-specific training for all public-facing professionals across health, education, and employment sectors, focusing on neurodiversity-affirmative practices and reasonable adjustments10101010101010. Thirdly, to provide significant, sustainable, and ring-fenced funding for the autism-specific third sector, which offers vital community support and crucial crisis prevention, ensuring greater transparency and accountability in how these funds are managed to directly benefit frontline services. 11111111
3. My name is Mr Spencer Errol Grennan FRSA, I’m a 31-year-old male from Cardiff, Wales and I received a formal diagnosis of autism in 201812. This has provided me with a unique lens through which to observe and experience the implementation and impact of the Autism Act 2009 and the broader autism strategy. 13
4. I am submitting this evidence to share my lived experiences and insights, particularly in relation to how the Act and strategy are working on the ground for autistic individuals14. While I am based in Wales, I recognise that education, environment, health and transport, among other areas, are devolved issues within the Welsh Parliament15. However, I am delighted to hear that Autism is on the agenda for UK-wide policy review16. This is particularly encouraging knowing that many of my Westminster petitions have been rejected by the Petitions Committee with the following statement: 'Sorry, we can’t accept your petition – “Debate on UN Report on Extreme Poverty and Human Rights in the UK”. It’s not clear what the petition is asking the UK Government or Parliament to do. Petitions need to call on the Government or Parliament to take a specific action. We're not sure exactly what you'd like the Government or Parliament to do.' 17 Despite this, my experiences inform my campaigning efforts, such as the Wales Autism Bill 2019, which sought to address similar challenges. 18
5. Furthermore, recent personal challenges, including the bereavement of my father over Christmas and the general difficulties of day-to-day life as an autistic person, have starkly highlighted existing gaps and inadequacies in current support systems, which I will elaborate on in response to the Committee's questions. 19
6. It is also important to note that Wales is the first country in the world to enshrine into Law the Wellbeing of Future Generations (Wales) Act 201520. As is frequently quoted, ‘What Wales is doing today, the world will do tomorrow.' 21 I am aware that Lord Bird has been a prolific campaigner for lobbying the Westminster Parliament for a UK-wide Future Generations Bill, reflecting the forward-thinking approach already adopted in Wales. 22
7. Public understanding of autism is significantly lacking, leading to frequent misinterpretations of behaviour and communication23. This has created barriers in social interactions and professional settings24. Common misconceptions, such as autism being solely a childhood disorder or linked to intellectual disability, foster judgmental attitudes and limit support25. These experiences have strained relationships and made accessing necessary services challenging26. Discrimination, sometimes unintentional, highlights the urgent need for greater awareness and acceptance27. While figures like Greta Thunberg and Elon Musk have raised global awareness of autism in their respective fields, it's crucial for the public to fully recognise that these celebrity figures often have different upbringings and lifestyles compared to many within the broader autistic community, particularly in the UK28. Many autistic individuals here experience significant hardship, strained relationships, and mental health issues29. There is currently no single, official voice that speaks for the entire autism community, as everyone on the spectrum is different and has diverse needs30. While we can relate to one another in some ways, the spectrum of experiences is vast, and public understanding must reflect this diversity, rather than focusing solely on a few prominent examples. 31
8. My campaign to resurrect the Wales Autism Bill 2019, which garnered attention from Welsh Conservative MS Paul Davies (as evidenced by press articles like those in Nation.Cymru and Pembrokeshire Herald), revealed a concerning history: the Bill had been previously tabled twice by Mark Isherwood MS, who is now the Chair of the Senedd's Cross-Party Group on Autism32. This highlights a persistent, unaddressed need for dedicated autism legislation in Wales33. Promoting the campaign on platforms like the National Autistic Society's online community forum (see: https://community.autism.org.uk/f/adults-on-the-autistic-spectrum/40829/we-need-your-support-demand-action-for-autistic-rights-in-wales) exposed a stark reality: the provision of support and public services, particularly autism diagnoses, is a postcode lottery, especially in rural Wales34. The feedback received confirmed significant challenges for autistic individuals living in these areas, exacerbating the impact of poor public understanding due to a lack of accessible services35. The very act of resurrecting this Bill, despite its prior rejections, underscores the ongoing, unmet needs within the Welsh autistic community and demonstrates the power of grassroots efforts to bring crucial issues back to the forefront of legislative debate. 36
9. It remains perplexing why the Welsh Government, with a budget of approximately £39 billion, refused to approve the Wales Autism Bill 2019, which sought an estimated £7 million to fulfil the needs of the autistic community37. This is particularly puzzling given that Wales was the first country in the world to legislate the Wellbeing of Future Generations Act 2015, which mandates long-term, integrated, and preventative approaches to public policy38. While the Welsh Labour government chose to address needs through the Autism Code of Practice, this document, unlike statutory legislation, does not fully enforce public services to meet the specific needs of autistic people39. This often allows individuals to fall through the safety net, with no guaranteed redress when services fail40. This creates an environment where adherence is discretionary rather than mandatory41. Most recently, however, the Welsh Labour government announced £13.7 million of funding to transform neurodiversity services and cut ADHD and autism waiting times (https://www.gov.wales/137-million-transform-services-and-cut-adhd-and-autism-waiting-times)42. While this recent investment is welcome, it highlights the historical underfunding and the reactive nature of current policy, rather than a proactive, legislated commitment43. My experience also suggests that party politics does not always benefit the autism community44. Although I felt impacted by the austerity policies of the UK Conservative Party, which supported a harsh environment of sanctioning Universal Credit claimants to achieve high employment rates, I was intrigued to see Welsh Conservatives, specifically Paul Davies MS, seemingly doing a better job representing the autism community in Wales than Welsh Labour45. Despite this, I had to reach out to my former Labour MP Kevin Brennan to resolve a DWP sanction I experienced last year, reflecting the complexities and sometimes contradictory nature of political representation46. This experience highlights the need for all parties to prioritise the well-being of autistic people, rather than allowing political allegiances to hinder progress. 47
10. The Government could take several specific actions to improve public understanding and acceptance:
○ National Awareness Campaigns: Implement large-scale campaigns that highlight the diversity of autism, focusing on real-life stories and experiences to personalise the issue48. These campaigns should be culturally sensitive and accessible to all, including those in rural areas, and actively combat stereotypes by showcasing the breadth of the autistic experience beyond high-profile figures. 49
○ Inclusion in School Curricula: Integrate education about autism into school curricula at all levels to ensure that young people grow up with a better understanding and acceptance of neurodiversity. 50
○ Mandatory Training for Public-Facing Professionals: Provide mandatory and comprehensive training for professionals in healthcare, education, social services, and law enforcement to enhance their ability to interact effectively with autistic individuals and provide appropriate, non-discriminatory support51. This training should address the specific challenges faced by autistic people in rural areas. 52
○ Community Workshops and Events: Organise community-based workshops and events to facilitate dialogue and interaction between autistic individuals and the general public53. These should be adequately funded and accessible in all parts of Wales, addressing the postcode lottery issue. 54
○ Utilise Diverse Media Platforms: Use television, radio, social media, and other platforms to share accurate and up-to-date information about autism, ensuring information reaches remote communities effectively and represents the full spectrum of autistic lives. 55
○ Legislate for Autism: Revisit and pass dedicated autism legislation, such as the Wales Autism Bill, to provide a robust statutory framework for improved services, consistent support, and public awareness initiatives across Wales56. This would ensure that public services are legally obliged to meet the needs of autistic people, thereby preventing individuals from falling through the safety net and ensuring that political differences do not impede essential provisions for the autism community57. This legislative approach would also align more directly with the proactive spirit of the Wellbeing of Future Generations Act 2015. 58
Links to Your Campaign and News Articles:
● Senedd Petition Link: https://petitions.senedd.wales/petitions/246466
● National Autistic Society Community Forum Link (your post): https://community.autism.org.uk/f/adults-on-the-autistic-spectrum/40829/we-need-your-support-demand-action-for-autistic-rights-in-wales
● Press Articles Mentioning Your Campaign:
○ https://nation.cymru/news/senedd-petition-launched-to-resurrect-rejected-autism-legislation/
○ https://pembrokeshire-herald.com/105852/paul-davies-backs-new-autism-bill-petition/
○ https://www.paul-davies.org.uk/news/paul-davies-backs-new-autism-bill-petition
● Welsh Government Funding Announcement: https://www.gov.wales/137-million-transform-services-and-cut-adhd-and-autism-waiting-times
11. Your diagnostic journey involved a referral from your GP, Dr. Williams, after a manager at your workplace suggested you might have an autism spectrum disorder59. You underwent two assessment appointments in May and June 2018 with Lucy Wells, Highly Specialist Occupational Therapist, and Martin Connolly, Autism Specialist Nurse60. The assessment included the Autism Diagnostic Observation Schedule-2 (ADOS-2), which helped observe your responses to structured questions and tasks61. A second appointment was a clinical interview, which you attended with your mother and older sister, Cath Grennan, to gain information about your developmental history62. The assessment adhered to the NICE Guidance for 'Autism: recognition, referral, diagnosis and management of adults on the autism spectrum (NICE, 2012)'63. You received your formal diagnosis of Autism Spectrum Disorder (ASD) according to both ICD-11 (6A02) and DSM-5 (F84.0) on September 10, 2018, from the Integrated Autism Service, NHS Cardiff and Vale University Health Board64. While your diagnostic report doesn't detail the waiting time for your initial assessment, your forum post indicates that the journey to diagnosis was complex, involving challenges with recalling childhood experiences and initial considerations of private assessments due to financial constraints65. Crucially, during a recent telephone call (June 2025) with Martin Connolly of the Integrated Autism Service, you were informed that you were "lucky" to receive an urgent diagnostic assessment in 201866. This was due to your proactive request for the earliest possible appointment (in case of a cancellation) and the fact that the Cardiff & Vale Integrated Autism Service was a newly formed NHS initiative at the time67. You were surprised to learn that the current waiting time for an autism diagnosis in the Cardiff & Vale area is now 28 months. 68
12. Following your diagnosis, you were placed on a waiting list for a 'Post Diagnostic Group' and received information about Autism forums69. You also accessed support from the Integrated Autism Service and met with Martin Connolly and Katrina Farrah to discuss your support needs and help you understand your diagnosis70. However, your forum post and additional details highlight significant gaps and challenges post-diagnosis, which were further exacerbated by several traumatic events:
○ Traumatic Employment Dispute: The employment dispute with HMRC, which led to your dismissal on April 30, 2018, was profoundly damaging to your wellbeing71. You felt you lost your income, a sense of purpose, and your daily routine72. The lack of aftercare and the need to navigate the legal process without legal aid added to this distress73. You ultimately chose not to pursue your employment tribunal claim due to concerns about the potential impact on your mental health or bringing back bad memories. 74
○ Inadequate Handling of Workplace Incidents: At the time of the racist remark that caused upset and offence – an incident you stated was unintentional and of which you were unaware of the offence caused – only one of three such incidents was officially reported by the person who received the comment, while the other two were merely logged by the line manager75. This indicates an inconsistent and insufficient approach to addressing workplace issues involving autistic employees. 76
○ Impact of Sensory Environment: The racist remark incident occurred in a big open-plan office environment where you felt overwhelmed by numerous sensory stimuli, including noise, light, and smell77. You explicitly stated finding this environment "very stressful"78. This highlights how unsuitable environments can exacerbate challenges for autistic individuals and contribute to misunderstandings or incidents. 79
○ Lack of Internal Support and Advocacy: Despite receiving positive feedback from DWP mentors, who noted your professionalism, calm demeanour, ability to hit call targets, and effective communication with vulnerable claimants, and their guidance to seek help within your own HMRC workplace, as they felt you were being treated "like the butt of the joke," the internal HR processes proved insufficient80. While a line manager encouraged communication with Sir Philip Rutnam (former Disability Champion of the UK Civil Service), the overall support structure within the Civil Service proved inadequate in preventing your dismissal81. This points to a significant gap in the practical application of disability awareness and support within large organisations, despite individual strengths and mentor support. 82
○ Engagement with the United Nations: In the summer of 2018, you emailed the United Nations Special Rapporteur Philip Alston, who visited the UK to report on human rights and extreme poverty83. You detailed the issues affecting the last generation, including the poverty gap, lack of opportunities, and social exclusion, based on extensive research84. This experience highlighted the importance of clear, evidence-based communication, sensitivity, and diplomacy when addressing challenging issues. 85
○ Benefits and Daily Living Support: You experienced difficulties obtaining Personal Independence Payment (PIP) and navigating complex support systems, suggesting a gap in practical advice and assistance for daily living and financial support86. The subsequent reduction in Universal Credit while in full-time education further complicated your financial situation. 87
○ Bereavement: The death of your beloved Jack Russell Terrier due to cancer and multiple organ failure in December 2018, and the recent passing of your father over Christmas, added significantly to your emotional distress and challenges with day-to-day life. 88
○ Reliance on, and Undermining of, Community and Charitable Support: You found engaging with ad hoc charitable courses/workshops and community organisations to be significantly beneficial for your wellbeing, personal development, and lifelong learning89. This demonstrates the critical role these non-statutory services play, often operating under principles like the Social Value Act, in fostering resilience and enabling individuals to overcome trauma in a supportive environment with like-minded people90. Such support is crucial for integrating back into civil society after hardship, exclusion, or mental health problems91. However, the effectiveness of these organisations, such as School of Hard Knocks (rugby charity), UpRising UK, Patchwork Foundation, and Prince's Trust, is being undermined as many have regrettably relinquished their support for adult employability or youth (young adult) development programmes92. While these charities are adept at helping individuals build "growth mindsets," their efforts can sadly crumble under the weight of failed government welfare policies, such as austerity measures and punitive systems, which erode the very foundations of recovery and progress. 93
○ Awareness and Acceptance: Your experience with an unintentional racist remark at work leading to dismissal, despite your unawareness of the offence, highlights a broader societal lack of understanding regarding autistic communication styles and the need for improved public understanding and acceptance. 94
13. Based on your journey, the following improvements could significantly enhance assessment, diagnosis, and post-diagnostic support:
○ Address the Interplay of Devolved and UK-wide Issues: While health is a devolved matter, the UK Parliament must address areas within its direct remit, such as employment law, welfare benefits, and national strategies, to ensure they effectively support autistic individuals across all four nations95. The UK Government's autism strategy should strongly influence and support best practices in devolved administrations, ensuring a consistent baseline of rights and support96. Support and learn from grassroots initiatives like the Wales Autism Bill 2019 campaign, which demonstrate proactive efforts to drive legislative change and highlight the ongoing need for comprehensive, statutory frameworks for autism support. 97
○ Drastically Reduce Waiting Times for Assessment: The current 28-month waiting time for an autism diagnosis in Cardiff & Vale is unacceptable and a significant barrier to timely support98. The government must invest substantially in increasing the capacity of diagnostic services across the UK, including the recruitment and training of more specialists, to meet demand and reduce these unconscionable waits. 99
○ Ensure Equitable and Accessible Diagnostic Pathways: While your experience benefited from an urgent cancellation and a newly formed service, the system should not rely on "luck"100. Standardised, accessible pathways should be in place to ensure all individuals receive timely assessments, regardless of their ability to proactively seek cancellations or the recency of local service establishment. 101
○ Enhance the Comprehensiveness of Assessments and Reports: Ensure that assessment processes gather thorough historical information, potentially through more guided interviews or questionnaires, to alleviate the burden on individuals to recall complex childhood details. 102
○ Provide Tailored, Comprehensive, and Proactive Post-Diagnostic Support Packages:
■ Proactive Signposting and Navigation: Instead of solely providing information, offer direct and personalised signposting to relevant services103. This should include employment support, benefits advice (like PIP), mental health services, community groups, and legal aid resources104. This should be a structured, integral part of post-diagnostic care, with dedicated navigators or key workers to guide individuals through the complex support landscape. 105
■ Emotional and Practical Support: Implement programmes that offer ongoing emotional support and practical advice for daily living challenges106. This should include strategies for managing stress, sensory sensitivities, emotional regulation, and bereavement. 107
■ Robust Workplace Support and Employer Education: Develop clear, legally enforceable pathways for newly diagnosed autistic individuals to access specialised workplace support108. This must include mandatory, in-depth autism awareness training for employers and HR departments, focusing on practical reasonable adjustments, communication differences, and conflict resolution that accounts for neurodiversity109. This training should also cover appropriate incident reporting and management110. Direct liaison services between autism support teams and employers are crucial to prevent discrimination and foster truly inclusive environments, as demonstrated by your experience despite your strong performance and positive mentor feedback. 111
■ Support for Sensory Sensitivities in Workplaces: Guidance for employers on creating sensory-friendly work environments, particularly in open-plan offices, is essential to minimise distress and improve productivity for autistic employees. 112
■ Accessible Financial and Legal Aid Support: Provide clear and easily accessible pathways for accessing financial and legal aid support, especially in cases of employment disputes or benefits claims, to ensure autistic individuals are not disadvantaged when navigating complex bureaucratic or legal challenges. 113
■ Integrated Mental Health Support: Ensure access to mental health services that are specifically trained and sensitive to the needs of autistic individuals, particularly in the aftermath of traumatic experiences such as employment disputes or bereavements. 114
■ Grief and Bereavement Support: Provide specialised resources and support for autistic individuals coping with grief and loss, acknowledging the unique ways in which autistic people may process such experiences. 115
■ Long-term Support: Recognise that post-diagnostic support is not a short-term intervention116. It requires ongoing, adaptable support to meet the evolving needs of autistic individuals throughout their lives. 117
○ Strengthen and Sustain Community and Charitable Support:
■ Strategic Investment in Non-Statutory Services: Recognise and strategically invest in the vital role played by charitable courses, workshops, and community organisations118. These non-statutory services are fundamental for promoting wellbeing, personal development, and lifelong learning, enabling individuals to overcome trauma and re-integrate into civil society after periods of hardship, exclusion, or mental health challenges119. Their ability to foster "growth mindsets" is invaluable. 120
■ Protect and Expand Employability and Development Programmes: Address the concerning trend of organisations like School of Hard Knocks, UpRising UK, Patchwork Foundation, and Prince's Trust reducing or relinquishing support for adult employability or youth development programmes121. Government policy should actively seek to sustain and expand such initiatives, perhaps by leveraging mechanisms like the Social Value Act, rather than allowing their capacity to diminish. 122
■ Align Welfare Policies with Support Efforts: Critically review and reform government welfare policies, including those related to austerity and the benefits system, to ensure they complement, rather than undermine, the rehabilitative and developmental work of charitable and community organisations123. Policies should foster a conducive environment that supports long-term recovery and growth, ensuring that the progress made by individuals through these valuable initiatives is not negated by punitive or insufficient state support124. This includes providing accessible and consistent financial support (e.g., through Universal Credit) that does not penalise individuals for pursuing education or personal development. 125
○ Improve Public Understanding and Acceptance (Broader Context):
■ Beyond workplace training, invest in national, government-backed public awareness campaigns to foster greater understanding and acceptance of neurodiversity across all aspects of society126. This could include dispelling common myths, highlighting the diverse strengths of autistic individuals, and promoting respectful and inclusive interaction. 127
14. Your personal experience, particularly the stark contrast between your 2018 assessment and the current 28-month waiting list, coupled with the profound emotional and practical challenges you faced including the traumatic employment dispute, personal bereavements, and navigating complex support systems, provides powerful evidence for the urgent need for significant investment and holistic reform in autism assessment, diagnosis, and post-diagnostic support across the UK. 128
15. As a formally diagnosed autistic individual since 2018, I am keen to respond to the House of Lords Autism Select Committee's call for evidence, particularly addressing the question of how the Government can improve the identification and support of autistic people, including those without a diagnosis129. While I understand that health is a devolved matter for the Welsh Parliament, I believe the House of Lords can play a vital role in influencing UK-wide policies and best practices that impact autistic individuals across the four nations130. I also wish to use this opportunity to highlight my campaign for a Wales Autism Bill and the personal challenges I've faced, including the recent bereavement of my father. 131 Here are my views on how the Government can improve the identification and support of autistic people, including those without a diagnosis: 132
16. Before my formal diagnosis in 2018, my life was a constant struggle to understand why I felt so different and why my needs were consistently misunderstood133. The difficulties in getting my needs recognised and supported were profound and pervasive:
○ Feeling Misunderstood and Dismissed: For years, I felt like I was speaking a different language to everyone around me134. My struggles with social interactions, sensory sensitivities, and executive function were often interpreted as shyness, defiance, or simply not trying hard enough135. Professionals, including teachers and some healthcare staff, often dismissed my anxieties and difficulties as behavioural issues or general stress, rather than considering an underlying neurodevelopmental difference136. There was a lack of curiosity or understanding about why I was struggling. 137
○ Lack of Appropriate Support: Because my autism was not identified, I did not receive any appropriate support for my unique needs138. In educational settings, I struggled significantly with transitions, group work, and the unstructured nature of social times, leading to anxiety and school avoidance139. In healthcare, my communication style and sensory sensitivities often made appointments overwhelming, and my distress was often attributed to anxiety rather as a direct result of the environment or interaction style140. There was no framework for professionals to adjust their approach to accommodate my differences. 141
○ Internalised Difficulties and Self-Blame: Without an explanation for my challenges, I internalised the struggles, leading to significant self-blame, low self-esteem, and feelings of inadequacy142. I constantly tried to "mask" my difficulties, which was exhausting and ultimately unsustainable, leading to burnout and mental health issues like anxiety and depression143. I genuinely believed there was something fundamentally "wrong" with me, rather than understanding that my brain simply processed information differently. 144
○ Navigating Bureaucracy and Services: Even when I sought help for mental health issues that stemmed from my undiagnosed autism, the pathways were not designed to consider neurodiversity145. The focus was on managing symptoms rather than identifying the root cause, leading to a cycle of short-term interventions that rarely provided lasting relief. 146
○ Self-Medication with Alcohol: During workplace incidents and the arduous pursuit of a formal diagnosis, the immense stress of avoiding burnout, fulfilling job duties, and the constant dread of losing my employment contract led me to self-medicate with alcohol147. I was deeply surprised to later learn from the National Centre for Mental Health how common alcoholism is within the autism community, a fact highlighted by their collaboration in a new study offering fresh insight into autism in adults: https://www.ncmh.info/2020/01/14/ncmh-collaborates-in-new-study-offering-fresh-insight-into-autism-in-adults/148. This personal experience underscores the critical need for early identification and appropriate support to prevent such damaging coping mechanisms149. Moreover, the prevalence of these issues highlights the systemic failures within workplaces to identify and accommodate neurodivergent needs, forcing individuals to mask their struggles to avoid professional detriment. 150
○ Undiagnosed Gut Health Issues: Furthermore, as highlighted in my diagnostic report, in my early years, I attended a special school and was a regular outpatient at the bowel clinic at St David's Hospital, Cardiff151. There, I would speak to a clinician about irregular bowel movements and discuss the characteristics of my stools as highlighted on the Bristol Stool Chart152. I have recently found these life experiences highly relatable with a growing number of studies being published around the world, including from the USA and Taiwan, that mention the association of early childhood constipation with the risk of autism spectrum disorder153. This raises a crucial question: why isn't gut health, or significant and persistent gastrointestinal issues, considered as another potential symptom or early indicator of autism spectrum disorder? 154 Could acknowledging this connection help to facilitate formal diagnoses in early childhood, significantly sooner than in late adult life? 155 The potential to identify autism through such physiological markers, alongside developmental and behavioural observations, warrants serious consideration and further research156. Such an approach would align with a "prevention is better than cure" philosophy, potentially averting years of distress and the development of maladaptive coping mechanisms. 157
○ Challenges with Romantic and Intimate Relationships: A deeply sensitive but pervasive challenge throughout my pre-diagnosis life has been the history of having little to no romantic or intimate partners158. While I regularly experience feelings of loneliness, as many do within the autism community, I can recall opportunities to engage in romantic relationships but felt too shy, socially anxious, or simply unsure how to proceed, only to later regret these missed chances159. This often led to what is commonly termed "double empathy" issues, where the social disconnect leads to mutual misunderstanding160. In attempts to cope with this loneliness and lack of intimacy, I at times found myself consuming excessive adult entertainment and spending extortionate amounts on dating sites, neither of which genuinely addressed the underlying need for connection161. Interestingly, I have found it incredibly beneficial connecting with members of the Japanese Hikikomori communities who practice self-isolation away from the demands of society162. Their personal struggles with relationships and societal pressures resonate deeply with my own experiences, providing a sense of shared understanding and reducing the feeling of isolation163. This highlights the profound impact of social and relationship difficulties on autistic individuals and the varied, sometimes unhelpful, coping mechanisms employed in the absence of appropriate support164. The lack of understanding and specific support for autistic individuals in navigating social and romantic relationships contributes significantly to mental health struggles and social isolation within the community. 165
17. The delay in my diagnosis has had a profound and multifaceted impact on my life:
○ Lost Years of Support and Understanding: The most significant impact is the loss of many years where I could have received appropriate support, understanding, and strategies to navigate the world166. My academic and professional potential was undoubtedly hindered by the lack of recognition of my specific learning and social needs. 167
○ Compounded Mental Health Issues: The sustained effort to mask and the constant misunderstanding led to significant and deeply entrenched mental health challenges, including the development of maladaptive coping mechanisms like alcohol use and unhelpful patterns in seeking intimacy168. It took years after diagnosis to begin to unpick the trauma and self-blame accumulated over a lifetime of feeling "othered." 169
○ Missed Opportunities: There were opportunities in education, employment, and social development that I was simply not equipped to access or maintain due to my undiagnosed autism170. Without understanding my own neurotype, I made choices that were not conducive to my well-being or success171. This also extends to missed opportunities for meaningful romantic relationships and genuine social connections. 172
○ Strain on Relationships: My undiagnosed autism also placed a strain on personal relationships, as communication differences and unmet needs often led to misunderstandings and frustration on both sides. 173
○ Delayed Self-Acceptance: It took until my formal diagnosis for me to truly begin to understand myself and embark on a journey of self-acceptance174. This crucial step towards a more authentic and fulfilling life was delayed by decades. 175
18. To improve the identification and support of autistic people, including if they do not have a diagnosis, the Government must focus on a multi-pronged approach that prioritises early identification and inclusive practices across various settings:
○ Mandatory Autism Awareness and Neurodiversity Training for All Public Sector Professionals:
■ Scope: This training should not be limited to healthcare professionals but extend to all public sector workers who interact with the public, including educators (teachers, teaching assistants, support staff), social workers, police officers, housing officers, Job Centre Plus staff, and administrative staff across all government departments. 176
■ Content: The training should cover the diverse presentation of autism (including in females and those who mask), common autistic traits, communication differences, sensory sensitivities, and executive function challenges177. Crucially, it must emphasise the importance of presuming competence and accommodating differences even without a formal diagnosis178. It should also touch upon co-occurring conditions, including mental health challenges, the risk of substance misuse often linked to undiagnosed autism and burnout, and the specific challenges autistic individuals face in forming and maintaining social and romantic relationships179. Furthermore, it should include awareness of common co-occurring physical health issues, such as gastrointestinal problems, that are frequently reported by autistic individuals. 180
■ Regular Refreshers: This should not be a one-off course but include regular refresher training to ensure knowledge is current and to address emerging best practices. 181
○ Early Identification in Educational Settings:
■ Universal Screening: Implement a non-diagnostic screening tool in early years settings (preschool, nursery) and primary schools to flag potential signs of autism, not for diagnosis, but to trigger further observation and support182. This is about identifying individuals who may benefit from adjustments, not labelling. 183
■ Teacher Training: Enhance teacher training programs to include comprehensive modules on neurodiversity, with a specific focus on identifying early signs of autism and understanding how it presents in the classroom184. Teachers are often on the front lines and in a prime position to notice differences. 185
■ "Needs-Led" Support, Not "Diagnosis-Led": Schools should be legally obliged to provide reasonable adjustments and support based on a child's observed needs, regardless of whether they have a formal diagnosis186. If a child is struggling with sensory input, communication, social interaction, or persistent physical health issues like severe gut problems, support should be put in place, and a pathway to further assessment (if deemed appropriate by parents/carers) can be discussed187. This aligns with the "assess, plan, do, review" cycle already embedded in SEN support. 188
■ Increased Funding for SENCOs and Support Staff: Provide adequate funding for Special Educational Needs Coordinators (SENCOs) and support staff to allow them to dedicate sufficient time to observing, assessing, and implementing individualised support plans for students. 189
○ Improving Identification and Support in Healthcare and Social Services:
■ GP Training: General practitioners (GPs) are often the first point of contact for individuals and families seeking help190. Comprehensive training for GPs on recognising the diverse presentations of autism, making appropriate referrals, and understanding the impact of pre-diagnosis struggles (including the risk of self-medication and relationship difficulties) is essential191. They should be equipped to offer initial signposting and practical advice192. This training must also explicitly cover the high prevalence of co-occurring physical health conditions in autistic individuals, particularly gastrointestinal issues, and how these might present or be reported. 193
■ "Autism-Friendly" Healthcare Environments: Implement guidelines for making healthcare environments more accessible for autistic individuals, even without a diagnosis194. This includes offering quiet waiting areas, clear visual schedules, allowing a support person, and communicating in a direct and clear manner. 195
■ Social Care Assessments: Ensure social care needs assessments are conducted by professionals trained in autism, who understand the specific challenges autistic individuals face in daily living, social interaction, and accessing community resources, regardless of diagnostic status196. These assessments should explicitly consider issues related to loneliness, social isolation, and difficulties with romantic relationships. 197
■ Public Information Campaigns: Launch public awareness campaigns that demystify autism, challenge stereotypes, and highlight common signs in adults and children198. This can empower individuals and families to seek support earlier199. These campaigns should also address co-occurring conditions and unhealthy coping mechanisms that can arise from unrecognised needs, and provide realistic information about neurodiverse relationships. 200
■ Research and Recognition of Associated Physical Symptoms: The Government should fund and promote further research into the association between gut health, other physical health markers, and autism201. If studies consistently demonstrate a strong correlation, then persistent, unexplained gastrointestinal issues in early childhood should be considered a potential red flag for autism spectrum disorder, prompting earlier developmental assessments202. This could significantly contribute to earlier formal diagnoses and interventions, reducing the lifelong impact of late diagnosis203. It is vital to investigate if symptoms like chronic constipation or other bowel irregularities could be integrated into early screening tools or diagnostic criteria as an associated feature, rather than a primary diagnostic criterion204. This could be particularly impactful for non-speaking or minimally-speaking children where behavioural indicators may be less obvious or harder to interpret. 205
○ Community Support and Peer Networks:
■ Funded "Pre-Diagnosis" Support Groups: Provide government funding for local charities and organisations to run support groups specifically for individuals who suspect they are autistic but are awaiting diagnosis, or for those who choose not to pursue a formal diagnosis but still need support206. These groups can offer invaluable peer support, practical strategies, and a sense of belonging, particularly around challenging topics like relationships and social isolation. 207
■ Accessible Information and Resources: Create and disseminate easily understandable, accessible information about autism, self-advocacy, and coping strategies that are available to everyone, not just those with a diagnosis208. This could include online resources, community workshops, and local library initiatives209. Special attention should be given to resources addressing social skills, navigating relationships, and combating loneliness for autistic individuals. 210
■ Facilitating Neurodivergent Social Connections: Fund initiatives that specifically aim to facilitate safe and supportive social connections for autistic individuals, including social groups, hobby clubs, and mentorship programmes211. This goes beyond just "social skills training" to foster genuine community and belonging, acknowledging that traditional social environments can be challenging. 212
○ Legislative and Policy Changes:
■ Strengthened Duty to Make Reasonable Adjustments: Reiterate and strengthen the duty under the Equality Act 2010 for public bodies to make reasonable adjustments for disabled people, explicitly clarifying that this duty applies even where a formal diagnosis is not yet in place, provided there is a reasonable belief that the individual has a disability (e.g., strong indicators of autism). 213
■ Wales Autism Bill (or similar legislation across the UK): As I have campaigned for, a specific Autism Bill would provide a legislative framework to ensure consistent and high-quality services and support for autistic people across health, education, and social care, regardless of diagnosis214. Such legislation could mandate the needs-led approach I advocate for, and potentially incorporate provisions for considering a wider range of early indicators, including physical health concerns, in the assessment pathway, and crucially, address the broader well-being and social inclusion needs of autistic adults. 215
○ Improving Support in Employment:
■ Addressing the Autism Employment Gap: The current UK autism employment statistics are stark, with only 32% of autistic adults in some form of paid work compared to 80% of non-disabled people216. This "autism employment gap" is a direct consequence of systemic barriers and the widespread lack of identification and appropriate support. 217
■ Proactive Reasonable Adjustments in Workplaces: Employers must be educated and mandated to understand that the duty to make reasonable adjustments under the Equality Act 2010 applies to individuals with disabilities, including autism, even without a formal diagnosis, if there is a reasonable belief that the individual is disabled218. Training for line managers and HR should cover common autistic workplace challenges, such as executive functioning difficulties (e.g., planning, prioritisation, time management) and sensory sensitivities (e.g., noise, lighting in open-plan offices), and how to implement proactive adjustments. 219
■ Neurodiversity-Inclusive Recruitment and Retention: The Government should incentivise and promote neurodiversity-inclusive recruitment practices (e.g., alternative interview formats, clear communication of expectations) and provide ongoing support for retention220. This includes greater promotion and streamlining of access to the Access to Work scheme, which is a vital but often underutilised resource for autistic employees. 221
■ Addressing Communication and Social Challenges at Work: Provide resources and training for workplaces on effective communication strategies for neurodiverse teams, acknowledging differences in communication styles and reducing reliance on implicit social cues or "banter" that can be exclusionary. 222
○ Addressing Post-Diagnostic Support for Adults:
■ Bridging the "What Now?" Gap: For adults receiving a late diagnosis, there is often a significant lack of structured post-diagnostic support compared to that available for children223. The Government must ensure that newly diagnosed autistic adults are not left feeling adrift after diagnosis, but are provided with clear pathways to support services, information, and peer networks. 224
■ Autism-Informed Mental Health Therapies: Mental health services need specific training to deliver autism-informed therapeutic approaches225. Traditional cognitive behavioural therapies (CBT) or talking therapies may not be effective or appropriate without adaptation for autistic communication styles, sensory processing differences, and cognitive patterns226. Funding for specialist autism-aware mental health services for adults is crucial. 227
○ The Critical Role of Research and Data Collection:
■ Comprehensive Data on Undiagnosed Needs: The Government must invest in more robust data collection on the experiences and unmet needs of undiagnosed autistic people, as well as those currently on extensive diagnostic waiting lists228. This data is essential to accurately gauge the scale of the problem and allocate resources effectively. 229
■ Longitudinal Studies: Support and fund long-term longitudinal studies that track individuals from early childhood through to adulthood, paying close attention to developmental milestones, co-occurring conditions (including physical health indicators like gut issues), and later diagnostic outcomes230. Such research is vital for improving early identification methods. 231
19. All these recommendations coalesce around the fundamental principle that early identification and needs-based support, even in the absence of a formal diagnosis, is not merely about addressing existing problems but is a powerful preventative measure232. It can avert years of distress, prevent the escalation of mental health issues, improve educational attainment, reduce the staggering unemployment rates among autistic people, and ultimately lessen the need for more intensive and costly interventions later in life, benefiting both individuals and society. 233
20. In conclusion, improving identification and support for autistic people, particularly those without a diagnosis, requires a fundamental shift from a "diagnosis-first" model to a "needs-led" approach234. This necessitates comprehensive, mandatory training for all public sector professionals, early identification strategies in education, and a commitment to making all services and environments more accessible and understanding235. My personal experience, compounded by the recent bereavement of my father which has highlighted the ongoing challenges of day-to-day life without adequate systemic support, my struggle with self-medication prior to diagnosis, my early life experiences with significant gut health issues, and the profound impact of relationship difficulties and loneliness, underscores the urgent need for these reforms236. The Government has a crucial role to play in fostering a society that not only accepts but actively supports and empowers autistic individuals, irrespective of their diagnostic status, and by considering a broader range of potential early indicators and lived experiences, we might significantly reduce the diagnostic age and improve life outcomes. 237
21. As an autistic person diagnosed in 2018, I've consistently encountered significant challenges when accessing general healthcare, mental health services, and even specific medications238. These experiences highlight critical gaps in understanding, provision, and consistency, which ultimately lead to autistic people disproportionately experiencing crisis and, tragically, a reduced health span. 239
22. My interactions with general healthcare, such as GP appointments and hospital visits, frequently present substantial hurdles240. GP consultations often feel rushed, leaving insufficient time for me to process information or articulate my concerns effectively241. The sensory environment of waiting rooms – with their bright lights, loud conversations, and unpredictable wait times – can be overwhelming, causing significant anxiety even before I see a doctor. 242
23. During consultations, I've found that healthcare professionals, while generally well-meaning, often lack a fundamental understanding of how autism impacts communication, sensory processing, and the presentation of symptoms243. This can lead to misunderstandings, misinterpretations of my needs, and a failure to implement simple, yet vital, adjustments244. For instance, direct eye contact can be uncomfortable for me, and I might need more time to formulate my answers, or prefer information presented in a written format rather than purely verbal245. The fast-paced nature of these interactions, coupled with a lack of autism awareness, often means my specific needs are not identified or addressed, resulting in suboptimal care and a reluctance to seek help in the future. 246
24. Hospital visits present even greater difficulties247. The chaotic and unpredictable nature of these environments, with their constant sensory overload from alarms, bright lighting, and continuous movement, can be incredibly distressing248. During a recent A&E visit for an injury, the sheer volume of noise and the absence of a quiet space exacerbated my distress, making it difficult to communicate my pain levels or understand instructions249. There was no apparent system for flagging my autistic needs, nor did staff seem trained in offering appropriate adjustments like dimmed lighting or a clear, written explanation of what would happen next250. This profound lack of understanding about the impact of sensory sensitivities and communication differences within clinical settings creates significant barriers to effective and compassionate care for autistic individuals. 251
25. The high co-occurrence of mental health conditions within the autistic community is well-documented, and my personal experiences, particularly following the deeply distressing bereavement of my father over Christmas, regrettably reflect this reality252. I sought mental health support to navigate this profound loss, alongside the existing challenges of day-to-day life as an autistic individual253. My experience with mental health services has been largely disappointing, highlighting significant difficulties in obtaining appropriate and timely support tailored to my autistic needs254. Initial assessments often feel generic, failing to adequately account for how autism can influence the manifestation of grief, anxiety, or depression255. Traditional diagnostic criteria and therapeutic approaches commonly used in mental health services are often not designed with neurodivergent individuals in mind, leading to misdiagnosis or, more commonly, a failure to address the root causes of distress256. For example, traditional talk therapy models can be incredibly challenging if communication differences are not acknowledged and adapted257. The expectation of direct verbalisation of complex emotions, or the use of metaphors and abstract concepts, can be particularly difficult for me to engage with effectively. 258
26. Furthermore, waiting lists for specialist mental health support are unacceptably long, and even when services are accessed, there's a clear deficit in autism-informed therapy259. The profound grief associated with my father's passing, compounded by the inherent challenges of being autistic in an often-unaccommodating world, has underscored the urgent need for mental health professionals to possess a deep understanding of autism and its unique intersection with mental well-being260. Without this specialized knowledge, autistic individuals are left feeling misunderstood, unsupported, and often deteriorate further, creating a significant crisis in care. 261
27. This issue is exacerbated by the fact that, while the Integrated Autism Service (IAS) in Wales has done tremendous work for myself and other autistic people, offering vital diagnostic assessments, post-diagnostic support, and advice, it is explicitly not a crisis service262. This is a critical and dangerous gap in provision263. When autistic people are failed by mainstream society – be it in education, employment, or general healthcare – they frequently find themselves in crisis264. At such points, there's a distinct lack of appropriate, autism-informed crisis intervention265. We are often left to navigate a system ill-equipped to support us, leading to further distress, hospitalisations, or even contact with the criminal justice system – outcomes that could often be averted with timely and appropriate crisis support266. The fact that the IAS, which possesses the most expertise in autism, cannot intervene during these critical moments leaves many highly vulnerable. 267
28. A further concerning issue I've personally faced relates to access to appropriate medication, even when it is widely recognised as beneficial for autistic people268. Despite experiencing chronic insomnia symptoms, my local GP surgery refused to prescribe Circadin (melatonin), a drug commonly used by autistic people worldwide to treat sleep issues269. Their stated reason was that they "didn't have the license"270. This situation is not only deeply frustrating but, as I observed, it "beggars belief" given the local availability of illegal substances. 271
29. This experience highlights several critical failures:
○ Lack of GP Knowledge and Confidence: There appears to be a significant lack of understanding and confidence amongst general practitioners regarding the prescription of medications like melatonin for autistic patients272. While Circadin has a specific license for over 55s, it is routinely prescribed off-label for sleep disturbances in children and adults with neurodevelopmental conditions, often with specialist initiation and GP continuation under shared care agreements273. My GP's refusal demonstrates a clear deficit in awareness of established clinical practice and national guidelines that permit such prescribing. 274
○ Barriers to Essential Support: Sleep disturbances are incredibly common among autistic individuals and can profoundly impact quality of life, mental health, and the ability to function day-to-day275. Denying access to a relatively safe and effective medication like melatonin, which is a vital tool for many in the autistic community globally, creates an unnecessary barrier to fundamental well-being. 276
○ Devolved vs. UK-wide Issues: While healthcare is devolved in Wales, the licensing of drugs like Circadin occurs at a UK level via the Medicines and Healthcare products Regulatory Agency (MHRA)277. This suggests that while the Welsh Government has responsibility for healthcare delivery, issues around drug licensing and national prescribing guidelines (which should inform GP practice across the UK) can have a direct impact on the ground in Wales278. The discrepancy between what is acceptable practice elsewhere in the UK or internationally for autistic people and what I encountered in Wales needs urgent addressing. 279
30. Despite the good relationship I have with professionals like Martin Connolly of the IAS, I have found it incredibly distressing whenever an organisation such as the NHS or social services experiences staff turnover or a restructure280. I value routine and find long-term relationships for coaching and life advice extremely beneficial281. When I have to connect with new professionals, it becomes a significant barrier to developing the necessary rapport282. My experience when Martin left his role to return to London, only to later return to his IAS role here in Wales, perfectly illustrates this283. Even when a familiar face eventually returns, the period of uncertainty and the need to adjust to a potential new contact can be highly unsettling. 284
31. This constant flux within critical services can lead to:
○ Increased Anxiety and Stress: The unknown aspects of new staff or new structures trigger significant anxiety. 285
○ Regression in Progress: Having to re-establish rapport and educate new professionals often means that previous progress in support or personal development is stalled or even reversed. 286
○ Reluctance to Engage: The sheer effort required to navigate these changes can lead autistic individuals to disengage from services altogether, missing out on vital support. 287
○ Breakdown in Trust: A lack of consistent relationships can erode trust in the services themselves, making it harder to seek help when needed. 288
32. This issue highlights the need for a person-centred, consistent approach to care, recognising that while staff changes are inevitable, their profound impact on autistic service users must be recognised and mitigated. 289
33. Perhaps one of the most alarming health concerns for autistic people is the significantly reduced health span and life expectancy, which is inextricably linked to socioeconomic factors290. This is a profound and deeply distressing issue, particularly for me in Cardiff291. I am acutely aware that in my current city, there can be as much as a 10-year difference in life expectancy between areas in the highly deprived South (like my local area of Ely) and the more affluent North of Cardiff292. My Freedom of Information request to Cardiff Met about a revised study on this disparity (https://www.whatdotheyknow.com/request/study_on_health_span_disparity_i) underscores my concern that this gap may be widening293. This stark reality hits particularly close to home, and I admit to feeling anxious when communicating about the lifespan of autistic people. 294
34. The passing of high-profile autistic figures, who were familiar faces and sources of inspiration, such as IndieAndy (Andy Burns), Alex Lowery, and others I learned about through the community, serves as a painful reminder of this vulnerability295. Their contributions to raising autism awareness and acceptance were immense, and their premature deaths underscore the urgent need to address the systemic issues that contribute to these tragic outcomes. 296
35. The reduced life expectancy for autistic people, often cited as being around six years shorter than the general population (and significantly more for those with co-occurring learning disabilities), is not due to autism itself, but rather to a complex interplay of factors including:
○ Poor Access to Healthcare: As detailed above, the current healthcare system often fails to meet the basic needs of autistic individuals, leading to untreated physical and mental health conditions. 297
○ High Co-occurrence of Physical and Mental Health Issues: Autistic people have higher rates of various chronic physical conditions, alongside extremely high rates of mental health conditions, including anxiety, depression, and a significantly elevated risk of suicide. 298
○ Socioeconomic Deprivation: Autistic people face significant barriers to employment and often live in poverty299. This leads to poorer living conditions, less access to healthy food, higher exposure to environmental hazards, and limited opportunities for preventative care300. In areas like Ely, where socioeconomic deprivation is pronounced, these factors are amplified, directly contributing to the alarming health span disparity. 301
○ Systemic Barriers: The cumulative effect of inadequate support across education, employment, and social services forces many autistic people into situations of chronic stress and poor health outcomes. 302
36. The fact that autistic people, particularly those in socioeconomically deprived areas, are dying prematurely is a human rights issue303. It reflects a systemic failure to provide equitable healthcare and societal support. 304
37. To address these critical concerns and truly improve access to healthcare and the health span for autistic people, I strongly recommend the following:
○ Mandatory, Comprehensive, and Ongoing Autism-Specific Training for All Healthcare Staff: All healthcare professionals, from administrative staff and receptionists to GPs, nurses, consultants, and mental health practitioners, must receive comprehensive, mandatory, and regularly updated autism-specific training305. This training must go beyond basic awareness to foster a deep understanding of autistic communication, sensory processing, co-occurring conditions, and the need for reasonable adjustments. 306
○ Proactive Implementation of Individualised Reasonable Adjustments: Healthcare providers must proactively implement individualised reasonable adjustments rather than relying on autistic individuals to request them307. This includes:
■ Providing clear, accessible pre-appointment information. 308
■ Offering quieter waiting areas or appointments at less busy times. 309
■ Allowing for extended appointment times. 310
■ Utilising visual aids and providing written summaries of consultations. 311
■ Prioritising continuity of care and the development of "autism passports" or detailed care plans to ensure smooth handovers during staff changes. 312
○ Establishment of Robust Autism-Specific Crisis Services: The Welsh Government, with crucial support and policy guidance from the UK Parliament where overarching strategies are concerned, must urgently fund and establish dedicated autism-specific crisis services313. These services must be staffed by autism-trained professionals, provide immediate, person-centred support, and act as a vital alternative to mainstream mental health crisis teams, preventing unnecessary detentions and further distress. 314
○ Clarification and Dissemination of Medication Prescribing Guidelines: National and regional health bodies must explicitly clarify and widely disseminate guidance to GPs regarding the appropriate prescription of medications like melatonin for autistic individuals with sleep difficulties315. This guidance should reinforce established clinical practice, address misconceptions around licensing, and highlight the critical importance of accessible pharmacological interventions for improving quality of life. 316
○ Targeted Strategies to Address Health Span Disparities in Autistic Individuals: The profound connection between poor socioeconomic backgrounds and reduced health span for autistic people demands immediate, coordinated action across all levels of government (UK and devolved)317. This includes:
■ Urgent Investment in Socioeconomically Deprived Areas: Directing increased resources to improve health infrastructure, community support, and social determinants of health in areas like Ely, Cardiff, where health disparities are most stark. 318
■ Addressing the Autism Employment Gap: Implementing robust strategies to improve employment opportunities for autistic people, thereby reducing poverty and its associated health risks. 319
■ National Research and Data Collection on Autistic Health Outcomes: Ensuring comprehensive, disaggregated data collection on the health and mortality of autistic people across the UK, allowing for a clearer understanding of the specific causes of premature death and the impact of socioeconomic factors320. This research should inform targeted interventions. 321
■ Public Health Campaigns: Raising awareness among healthcare professionals and the general public about the significant health inequalities faced by autistic people, particularly the reduced life expectancy and its preventable causes. 322
○ Cross-Government Collaboration on Neurodivergence and Health Outcomes: While healthcare is devolved, fundamental issues contributing to autistic people's health inequalities often stem from broader UK-wide policies323. UK Parliament, through this committee, can champion the need for better cross-government collaboration, ensuring that the impact of policies in Westminster on devolved nations' autistic communities is considered. 324
38. A holistic approach is needed to dismantle the systemic barriers that lead to crisis, poor health outcomes, and tragically, a shorter life for autistic individuals325. By addressing these comprehensive recommendations, both the Welsh Government and the UK Parliament can contribute to dismantling the significant barriers that currently prevent autistic people from accessing effective and compassionate healthcare, ensuring that our unique needs are understood, accommodated, and met with the dignity and respect every individual deserves, and crucially, improving the tragically short health span currently experienced by many in our community. 326
39. As an autistic individual with a formal diagnosis since 2018, I am grateful for the opportunity to contribute to this vital call for evidence327. While health is a devolved matter, many aspects of community support intersect with UK Parliament responsibilities, and I hope my experiences and recommendations, particularly from a Welsh perspective, will be valuable328. I also wish to highlight the ongoing campaigns I have initiated, such as the Wales Autism Bill 2019, and the profound impact of recent personal challenges, including the bereavement of my father over Christmas, on my ability to navigate day-to-day life and access support. 329
40. My experience with accessing community support in Wales has been largely challenging, marked by a significant lack of accessible, inclusive, and genuinely helpful provisions in many mainstream settings.
○ Social Groups: General social groups often operate on unwritten social rules and expectations that can be incredibly difficult for autistic people to navigate330. The level of sensory stimulation (noise, lighting, crowds) is frequently overwhelming331. While some groups may claim to be "inclusive," this often translates to a superficial welcome rather than a genuine understanding of how to adapt activities or environments to be truly accessible332. I have found a pervasive lack of awareness among group leaders and participants regarding communication differences, sensory sensitivities, and the need for clear, explicit instructions333. This often leads to feeling misunderstood, anxious, and ultimately, excluded. 334
○ Local Charities (General): While many charities aim to support vulnerable individuals, their understanding of autism is often limited335. Information provided can be generic, and support workers may lack specific training in neurodiversity-affirmative approaches336. This means that while they may offer practical assistance (e.g., with benefits forms, housing), the crucial emotional and social support that acknowledges and validates the autistic experience is often absent. 337
○ Leisure Activities and Public Spaces: The Challenge of Sensory Overload and Accessibility: Opportunities for leisure activities and general access to public spaces that are genuinely autistic-friendly are scarce338. Mainstream leisure facilities (e.g., gyms, community centres) often present sensory challenges and a lack of understanding from staff339. While some might offer specific "quiet hours," these are often limited and do not address the broader need for a truly inclusive environment and staff who understand communication differences and support needs340. This difficulty is acutely felt in large public venues341. My own Freedom of Information request to the British Museum (https://www.whatdotheyknow.com/request/autism_accessibility_and_visitor) clearly highlighted the significant barriers faced by autistic visitors342. Like many autistic people, I find crowded places intensely overwhelming, necessitating access to genuinely quiet spaces and the ability to be accompanied by a support dog without undue complication343. The responses from such institutions often reveal a lack of comprehensive data on quieter visiting times, limited provisions for true quiet spaces (beyond general "calm spaces" which may not always be quiet), and a need for more in-depth, autism-specific training for all front-of-house staff344. These barriers prevent meaningful engagement with cultural and recreational opportunities that should be accessible to all. 345
○ Challenges in Seeking Romantic Relationships and Online Dating: A significant gap in community support pertains to assisting autistic people in forming social and romantic relationships346. I have found online dating platforms like Tinder, Bumble, Hinge, and eHarmony to be particularly unhelpful and, at times, exploitative347. These platforms often impose costly subscription fees, with little transparency about pricing variations available elsewhere, and provide minimal to no responsive customer support348. The majority of my interactions on these platforms have been negative, often involving the superficial "swipe right" culture, followed by requests to move conversations to Snapchat or WhatsApp, frequently leading to unwanted and potentially malicious content such as malware349. This environment, which often values superficial "fake it till you make it" personas over genuine, down-to-earth personalities, makes it incredibly challenging for autistic individuals who typically value authenticity and direct communication350. It feels as though these platforms cater to a culture that champions superficiality, as often reflected in mainstream media and shows like Love Island, or the curated realities presented by figures such as Kim Kardashian and shows like Geordie Shore, rather than facilitating meaningful connections for neurodivergent individuals. 351
○ Autism-Specific Groups and the Third Sector: The Crucial Yet Fragile Role: In stark contrast to the challenges faced with mainstream services, my most profoundly positive and life-affirming experiences have been through engagement with the charity and third sector, particularly organisations with a deep understanding of autism or those that provide structured, supportive environments352. As detailed in my forum post on the National Autistic Society community (https://community.autism.org.uk/f/introduce-yourself/12960/hello-i-m-spencer-24-and-from-wales-this-is-the-story-of-my-diagnosis-employment-dispute-and-planning-my-next-steps), these moments were pivotal in my diagnosis journey and in helping me to understand myself353. These spaces, though often few and with precarious funding, provide invaluable opportunities for genuine connection, peer support, and a sense of belonging that is rarely found elsewhere354. The staff and volunteers in these organisations often have lived experience or extensive, specialised training, enabling them to provide truly person-centred support. 355
41. A prime example of this impactful support is my participation in the St Vincent's Ely Bridge, Men's Changing Lives programme in my local community, especially since the easing of Covid restrictions and following events such as the 2023 Ely Riots356. This faith-based community group, operating within the third sector, has provided invaluable support357. I have actively engaged in various activities, including boxing and weightlifting, alongside a crucial weekly evening support group meeting358. The positive impact has been so significant that I have been recognised at their annual awards ceremonies, receiving "Most Transformed Participant" in 2023 and "Man of Steel" in 2024359. These specific, tailored community initiatives truly demonstrate what can be achieved when support is accessible, inclusive, and responsive to individual needs. 360
42. Beyond this, I have engaged with several other impactful third-sector organisations that have profoundly enriched my life and capabilities361. In 2016, I volunteered for two weeks in Uganda with The Safe Foundation, an experience that pushed me far out of my comfort zone and provided invaluable life skills362. I've also benefited from participating in adult courses with the School of Hard Knocks charity, where I enjoyed playing rugby363. My commitment to community engagement was recognised by UpRising UK, a youth leadership development charity (of which former Prime Minister David Cameron was a patron and founded by Rushanara Ali MP), where I received a 'longest service' award364. Through UpRising, I had invaluable opportunities to network with political representatives, visit Westminster Parliament and the Senedd, and attend regular workshops365. I was also heavily involved with Prince's Trust Cymru as a Young Ambassador, famously running the Cardiff Half-Marathon in 2017 as part of the BBC Alfie's Army Challenge with former WRU rugby international Gareth Thomas366. More recently, during the Covid-19 pandemic in Winter 2020, I participated in the Patchwork Foundation's Masterclass programme367. My continued active involvement as a Fellow of the Royal Society of Arts, an invitation I received in Winter 2020, further underscores the value of these supportive networks. 368
43. However, the crucial point is the precarious nature of much of this provision369. While I've had many positive experiences, I've also seen them disappear370. For instance, my involvement with beekeeping and the 'Buzzin' project of Newlink Wales in 2019, which provided a fantastic community activity and a space for connection, abruptly lost its funding due to Brexit and subsequently closed371. I still volunteer with a community garden project at St Fagans Museum, but its operations have recently faced challenges due to staff unavailability, absences, and new staff, causing stress due to changes in my routine372. These activities, alongside my interests in gaming, history, and geography, highlight how access to varied, well-supported community opportunities allows autistic individuals to thrive and contribute. 373
44. Furthermore, I must also voice significant concerns regarding the sustainability of such vital third-sector provisions374. When I received my diagnosis in 2018, Autism Spectrum Connections Cymru (formerly 21 High St, Autism Initiatives UK) was instrumental in providing regular post-diagnostic group support, signposting, and offering invaluable 1-2-1 advice on employment and Disabled Students' Allowance375. My relationship with my coach, Kerry Hughes-Gillard, was particularly positive376. It is deeply disappointing to learn that this organisation, which once boasted 12 members of staff, now operates with only 4377. This substantial reduction, despite pledges from the Welsh Government regarding autism funding, indicates serious cuts to their operational capacity378. While I understand that provisions for Autism Initiatives in other regions of the UK may vary, the situation in Wales raises questions about the consistency and allocation of resources. 379
45. Furthermore, I was dismayed to see reports, such as that highlighted by Civil Society (https://www.civilsociety.co.uk/news/regulator-considers-action-over-charity-s-320-000-payment-to-ceo.html), about a significant payout to the Chair of 21 High St, particularly given the apparent lack of tangible improvements or increased capacity within the Welsh arm of the organisation380. This highlights a need for greater transparency and accountability in how funds are managed and allocated to frontline services. 381
46. It is with great concern that I observe how many of the organisations I've mentioned that previously offered robust support for autistic adults have either reduced their capacity or relinquished these roles due to funding instability or other pressures382. I genuinely wonder how the next generation of autistic individuals will develop and thrive without access to the same diverse and impactful opportunities that were so crucial for my own journey383. The systemic failure to adequately fund and sustain these vital community resources represents a profound loss for future generations. 384
47. In essence, while some services exist, their accessibility, inclusivity, and helpfulness are consistently hampered by a lack of autism-specific training, understanding, and appropriate environmental adaptations385. The critical exception and shining example of what good community support looks like is consistently found within the dedicated autism-specific third sector and other structured community initiatives, as exemplified by my numerous positive experiences, yet this sector faces severe funding instability, concerning governance issues, and the threat of permanent closure. 386
48. The pervasive lack of suitable community support from mainstream services has had a profound and detrimental impact on my life, exacerbating feelings of isolation, particularly during difficult times such as my recent bereavement. 387 The passing of my father over Christmas was a devastating blow, and the absence of accessible and understanding community support significantly compounded the challenges of grief. 388
49. Bereavement Support: Mainstream bereavement services are generally not equipped to support autistic individuals389. The highly social and often implicitly communicative nature of grief support groups can be overwhelming390. The expectation to verbalise complex emotions in a group setting, coupled with a lack of understanding of autistic processing of grief, left me feeling even more isolated in my profound sadness391. However, the St Vincent's Ely Bridge, Men's Changing Lives programme played a critical role in supporting me throughout this crisis392. While the Integrated Autism Service is not a crisis service, this community group provided invaluable and timely support during my bereavement, demonstrating the vital gap that such local initiatives can fill. 393
50. Managing Daily Life and Crisis Prevention: Beyond specific crises, the day-to-day challenges of managing life as an autistic person are significantly magnified by a lack of appropriate community support394. Simple tasks like navigating public transport, accessing shops, or engaging with local services become exhausting ordeals due to sensory overload and social anxiety395. The absence of accessible social groups, particularly beyond the often limited provision by the third sector, means that opportunities for meaningful social connection are severely limited, contributing to chronic loneliness396. This constant struggle to navigate an unaccommodating world leads to burnout and a reduction in capacity for even basic self-care, further entrenching isolation. 397
51. The recent disruptions to the community garden project I volunteer with at St Fagans Museum due to staffing issues, and the complete closure of the 'Buzzin' project, underscore how changes to established routines and the loss of valued activities can cause significant stress for autistic individuals398. Crucially, the Men's Changing Lives programme not only addressed my physical health through regular exercise but also provided essential connection with others in my local community399. This support was instrumental in preventing me from acting out during a particularly distressing time, specifically a DWP sanction. 400
52. During this period, I regrettably threatened to damage my local Jobcentre and cause harm to staff, which resulted in a conversation with a Community Police Support Officer401. However, the consistent support from this community group, particularly the intervention of Nathan Harding from St Vincent's, who accompanied me to my Jobcentre face-to-face meeting, was instrumental in de-escalating the situation402. As previously mentioned, my former Cardiff West MP also played a vital role in helping to resolve the matter with the DWP. 403
53. This experience underscores the profound impact that dedicated community support, rooted in understanding and practical assistance, can have in preventing crises and supporting individuals through immense stress404. My ongoing campaigns, such as the Wales Autism Bill 2019, are often undertaken from a position of relative isolation, highlighting the immense personal effort required to advocate for change when broad community support is so lacking. 405
54. To genuinely improve community support for autistic people across the UK, including in devolved nations through the influence of UK-wide initiatives and funding, I strongly recommend the following:
○ Significant, Sustainable, and Ring-fenced Funding for Local Autism-Specific Community Groups and the Third Sector: Based on my personal experience, these organisations are demonstrably the most effective and impactful providers of community support for autistic people406. My positive experiences with the National Autistic Society community forum, St Vincent's Ely Bridge's Men's Changing Lives programme, The Safe Foundation, School of Hard Knocks, UpRising UK, Prince's Trust Cymru, Patchwork Foundation, and the now-closed 'Buzzin' project highlight their indispensable role in providing genuinely inclusive, understanding, and beneficial support407. The concerning reduction in staff at Autism Spectrum Connections Cymru and the closure of projects like 'Buzzin' due to funding cuts exemplify the urgent need for stable and adequate funding. 408
○ Funding must be:
■ Long-term and stable, not project-based, to allow for consistent service provision, strategic planning, and the retention of skilled staff with specialist knowledge409. This stability is critical to prevent the sudden closures that cause distress and leave individuals without support. 410
■ Increased substantially to meet the growing demand for services and to prevent cuts to vital organisations, enabling them to expand their reach and capacity. 411
■ Protected from wider political or economic changes, such as Brexit-related funding shifts, which disproportionately impact grassroots community initiatives. 412
■ Explicitly cover:
■ Training for staff and volunteers in neurodiversity-affirmative practices, ideally delivered by autistic people or organisations with direct autistic involvement. 413
■ Sensory adaptations for premises and activities. 414
■ Outreach programmes to reach isolated individuals and those in rural areas. 415
■ A wider range of activities that cater to diverse autistic interests and support needs, including dedicated bereavement support and crisis prevention support for autistic individuals. 416
■ Support for the development of parent/carer support groups, which are often the first point of contact for families with newly diagnosed children. 417
■ Investing in the third sector is not just about providing services; it's about fostering spaces where autistic people feel understood, valued, and genuinely included, and ensuring these opportunities exist for future generations. 418
○ Enhanced Transparency and Accountability in Third Sector Funding and Governance: Given the concerns about funding cuts to vital services like Autism Spectrum Connections Cymru and reports of large payouts at a leadership level within some organisations, greater scrutiny is needed419. Funding bodies (both Welsh and UK Government where applicable) should implement stricter oversight mechanisms to ensure that allocated funds directly translate into improved frontline services and support for autistic people, rather than being disproportionately absorbed by administrative or executive costs420. There should be clear performance indicators tied to funding, focusing on tangible outcomes for autistic individuals (e.g., number of people supported, impact on well-being, successful employment outcomes) rather than just outputs421. A review of governance structures and executive remuneration policies within larger autism charities should be considered to ensure they align with charitable objectives and public trust, especially when frontline services are experiencing cuts and valuable projects are closing down. 422
○ Mandatory Autism Inclusion Training for All Mainstream Community Services and Public Venues: This is crucial for making existing services and public spaces genuinely accessible and inclusive, reducing the burden on specialist services and creating a more welcoming society423. This training should cover:
■ Understanding the autistic spectrum and diverse presentations. 424
■ Communication differences and strategies (e.g., clear, literal language; visual aids, allowing processing time). 425
■ Sensory sensitivities and how to create accommodating environments (e.g., offer quieter times, reduce fluorescent lighting, provide quiet spaces, support for assistance animals beyond basic entry). 426
■ Challenging stereotypes and promoting acceptance. 427
■ Practical strategies for adapting services (e.g., pre-visit information, designated contact persons, flexible appointment times, clear signage, and sensory maps for public venues). 428
■ This training should be an ongoing requirement, not a one-off session, and be delivered by autistic people or organisations with direct autistic involvement wherever possible429. Transparency in visitor data and accessibility provisions, as requested in my British Museum FOI, should become standard practice for all major public venues. 430
○ Improved, Centralised, and Accessible Signposting to Available Support: It is incredibly difficult for autistic individuals and their families to navigate the fragmented landscape of available support431. There is an urgent need for:
■ A national, easily accessible, and regularly updated online directory of autism-specific and autism-inclusive community services, categorised by location, type of support, and contact details432. This directory should clearly highlight specialist third-sector provisions, including successful models like the St Vincent's Ely Bridge programme and other valuable initiatives I have personally benefited from, as well as acknowledging gaps created by closures. 433
■ Clear, concise, and visually accessible information on how to access these services, avoiding jargon. 434
■ Dedicated "autism navigators" or liaison officers within local authorities and health boards to help individuals find and access appropriate support435. These roles could be particularly impactful if filled by autistic individuals or those with lived experience, drawing on their unique insights. 436
■ Better integration between diagnosis services and post-diagnostic community support, ensuring that individuals are immediately connected with relevant local services, especially those provided by the successful third sector, upon diagnosis. 437
○ Development of Autistic-Affirming Social and Relationship Support: Addressing the significant gap in community support for social and romantic relationships requires specific action. 438
■ Funding for community-led initiatives that facilitate genuine social connection and relationship building for autistic adults, moving beyond the superficiality and exploitative nature of mainstream dating apps439. This could include autism-specific social groups, workshops on relationship skills (developed with autistic input), and moderated online spaces that prioritise safety and authentic interaction over "swipe culture." 440
■ Collaboration with digital safety experts to educate autistic individuals on identifying and avoiding online exploitation, given the prevalence of scams and malware on general dating platforms. 441
■ Promotion of realistic expectations and understanding of autistic communication styles within relationships, both for autistic individuals and potential partners, fostering acceptance rather than pressure to conform to neurotypical norms. 442
55. By implementing these recommendations, with a strong emphasis on empowering and expanding the proven effectiveness of the autistic-led and autism-focused third sector, while also addressing concerns about its stability, accountability, and the long-term impact of service attrition, the Government can foster a more understanding, inclusive, and supportive community environment for autistic people443. This will enable them to lead fulfilling lives, access the vital support they need, and contribute meaningfully to society, ensuring that the next generation has access to the same, or even better, opportunities that have proved so crucial for individuals like myself, including support in building meaningful relationships and navigating public spaces effectively. 444
56. As someone with a formal autism diagnosis since 2018, and having personally advocated for systemic change through initiatives such as the 'Wales Autism Bill 2019' campaign, I welcome this opportunity to share my lived experience and concerns with the House of Lords Autism Select Committee445. My personal experience vividly demonstrates the potential for learning outside of traditional methods and the impact of both supportive and unsupportive systems. 446
57. Despite struggling with GCSE English, I firmly believe I overachieved in History447. This was not through conventional textbook learning alone, but significantly through engaging with immersive video games such as Medal of Honor: Frontline and Rising Sun448. These games provided a visual, interactive, and experiential understanding of historical events, geography, and strategic thinking that resonated deeply with my way of processing information449. This hands-on, visual learning, which parallels the insights of Temple Grandin's work on visual thinking, allowed me to grasp complex historical narratives in a way that standard classroom instruction often could not. 450
58. This leads to a critical concern: Mainstream education, particularly state schools, must urgently adapt to and fully integrate digital technologies – including educational video games, interactive simulations, high-quality documentaries, and curated online content like YouTube – as legitimate and effective tools for learning451. This should be explicitly recognised within curriculum frameworks and teacher training452. For many autistic learners, traditional auditory or text-heavy methods are less effective453. Digital platforms offer visual, interactive, and often highly engaging ways to convey information, allowing students to learn experientially and at their own pace454. My own success in History, despite challenges in English, serves as a testament to the untapped potential of these alternative learning pathways455. If mainstream education continues to resist these accessible and effective digital methods, it begs the question: are we truly committed to inclusive and effective learning for all? 456
59. In stark contrast to the challenges encountered with means-tested benefits, my experience with the Disabled Students' Allowance (DSA) for my part-time Open University study has been overwhelmingly positive and serves as a model for effective, person-centred support457. Unlike the often-impersonal and rigid PIP assessments conducted by CAPITA/ATOS on behalf of the DWP, DSA assessments are remarkably supportive458. They genuinely allowed me the time and space to elaborate on precisely how my autism impacts my student life459. This process focuses on enabling access and removing barriers to education, rather than on assessing incapacity. 460
60. Through DSA, I was able to attain crucial support and equipment, including:
○ Noise-cancelling headphones, which are invaluable for managing sensory overload in various study environments. 461
○ A new PC and specialised support software, essential tools for accessible learning. 462
○ Access to peer support sessions with Autism Spectrum Connections Cymru in 2021, providing invaluable connection and shared understanding. 463 I am currently in the process of replacing my lost noise-cancelling headphones and resuming peer support through an alternative organisation recommended by the Open University. 464 The streamlined and understanding nature of the DSA assessment process significantly alleviates stress and empowers autistic students to access the tools they need to succeed. 465
61. Furthermore, I also wish to highlight the incredible support I received in 2021 from Hafal (now Adferiad Recovery), who provided £1,000 to help cover costs associated with pursuing my lifelong learning466. I judiciously spent this on upgrading my PC, purchasing books, and amassing a collection of garden vegetable, flower, and herb seeds467. This last point reflects my deep passion for learning about horticulture and botany, demonstrating how targeted financial support can directly enable autistic individuals to pursue their interests and continuous personal development. 468
62. However, a significant and frustrating barrier to lifelong learning for autistic adults, particularly concerning further and higher education, is the rigidity and lack of understanding within the welfare system469. My distressing personal experience of having my Universal Credit claim terminated while pursuing a full-time course at Cardiff & Vale College is a stark example of a system that actively discourages self-improvement470. The irony is not lost that while the campus simultaneously hosted international students funded by the UAE government, a UK citizen like myself faced financial cut-off for pursuing education471. This issue creates immense financial insecurity and acts as a profound deterrent, preventing autistic individuals from acquiring qualifications and skills that could lead to greater independence and employment472. The current system forces an impossible choice between basic financial survival and educational advancement. 473
63. The Department for Work and Pensions (DWP) must work collaboratively with the Department for Education and the Office for Students (or their devolved equivalents) to review and reform Universal Credit regulations and interpretations474. This review should ensure that autistic individuals are not penalised or have their claims terminated when pursuing full-time or part-time education, especially distance learning options like an Open University degree475. There needs to be clear, consistent guidance that acknowledges the varied educational pathways autistic individuals may take to achieve employment or improve their quality of life476. The DSA model offers a valuable blueprint for how benefit assessments can be genuinely supportive and enabling for disabled students. 477
64. It is vital to recognise that education extends beyond formal academic settings478. Meaningful and transformative learning often occurs through real-world experiences that foster independence, interpersonal skills, and a broader understanding of the world. 479
65. The government should actively support and fund initiatives that provide autistic adults with opportunities for practical, experiential learning and skill development. This includes:
○ Prioritising Funding for Charities Offering Life Skills and Interpersonal Development: Directing resources to organisations that provide structured programmes focusing on daily living skills, social communication in real-world contexts, and fostering independence480. My personal experiences with organisations such as The Safe Foundation, UpRising UK, Prince's Trust, Adferiad Recovery, and Patchwork Foundation have been instrumental in my personal and professional development481. These programmes enabled me to step outside my comfort zone, learn about new cultures, and critically, develop essential interpersonal skills, independent living skills (such as budgeting, gardening, maintenance, and cooking), and communication strategies that are invaluable for navigating adult life. 482
○ Facilitating Access to International Experiential Learning: While I had hoped that the Turing Scheme would effectively replace the Erasmus+ Programme and improve access for young adults, including autistic individuals, to international study and work placements, my concern is that this has, in practice, proven to be another Brexit failure and post-Covid funding issue483. The loss of the comprehensive and well-established Erasmus+ scheme has significantly reduced opportunities for UK students to engage with diverse cultures and gain invaluable international experience484. The current landscape often lacks the structured, accessible, and well-funded alternatives necessary for autistic young adults to truly benefit from such life-changing experiences485. There needs to be a renewed commitment and clearer strategy to ensure that international experiential learning is genuinely accessible and robustly funded for all UK students, including those with autism, providing the same breadth and depth of opportunity that was previously available. 486
66. The challenges and successes highlighted above are not isolated incidents but illustrate fundamental issues with the current support landscape for autistic individuals.
○ Address the Interconnectedness of Issues through Cross-Government Collaboration: It is crucial to understand that difficulties experienced by autistic individuals in one area, such as a lack of appropriate educational support or rigid welfare policies, inevitably cascade into other aspects of their lives, including employment challenges, mental health difficulties, and reduced independence487. A truly effective autism strategy cannot exist in silos488. The UK Parliament and its respective departments (including Education, Work and Pensions, and Health) must foster genuine, cross-departmental collaboration to create a holistic, integrated support system that acknowledges the complex and interconnected needs of autistic people489. Siloed approaches consistently fail autistic individuals and lead to fragmented and ineffective support pathways. 490
○ Recognise the Significant Cost of Inaction: While investing in comprehensive, inclusive education, adaptable welfare systems, and robust experiential learning opportunities may require initial expenditure, the long-term societal cost of inaction is far greater491. Failing to adequately support autistic individuals through their educational journeys and into adulthood leads to increased reliance on benefits, a higher prevalence of mental health crises, underemployment or unemployment, and a greater demand on adult social care services492. Proactive, preventative investment is not merely an expense; it is an economic imperative that fosters greater independence, productivity, and overall well-being for autistic citizens. 493
○ Implement Robust Data Collection and Monitoring for Evidence-Based Policy: To effectively assess the impact of current policies and inform future improvements, there is a pressing need for more comprehensive and disaggregated data collection494. This includes tracking educational attainment, post-education pathways (further study, employment, volunteering), mental health outcomes, and the overall well-being of autistic students and adults across the UK495. Such data is essential for identifying gaps in support, understanding what interventions are genuinely effective, and ensuring that policy decisions are based on robust evidence rather than assumptions or anecdotal experience. 496
67. As a formally diagnosed autistic individual since 2018, I am grateful for the opportunity to contribute to your Call for Evidence497. While I understand that health is a devolved matter within the remit of the Welsh Parliament, I believe the House of Lords can play a crucial role in addressing issues under the purview of the UK Parliament, particularly concerning the Autism Act and its impact on the lives of autistic people across the UK498. I also wish to use this platform to highlight my ongoing campaigns, such as the Wales Autism Bill 2019, and to share personal insights into the day-to-day challenges faced, especially in light of the recent bereavement of my father499. This submission focuses specifically on question (g): How can support for autistic people to find and stay in work be improved? 500
68. Given the statistics from "The Buckland Review of Autism Employment: report and recommendations" (February 28, 2024), where only 3 in 10 working-age autistic people are employed compared to 8 in 10 non-disabled people, it's clear that significant challenges exist for autistic individuals in the employment sector501. This disparity, meaning 7 in 10 working-age autistic people are unable to access the independence and fulfillment that employment can bring, highlights a systemic issue that contributes to a sense of frustration regarding long-term reliance on benefits502. Furthermore, data from the Office for National Statistics indicates that just 22% of autistic adults are in any kind of employment, a figure that is significantly lower than for other disabled people (around 50%) and non-disabled people (over 80%). 503
69. Yes, I have unequivocally faced significant difficulties in employment due to my autism504. These challenges have manifested in various ways:
○ Finding a Job: The initial hurdle of the job application process itself is often overwhelming505. Traditional interview formats, with their emphasis on social cues, rapid-fire questioning, and often ambiguous expectations, are inherently disadvantageous for many autistic individuals506. My communication style, which can be direct and analytical rather than overtly "social," has often been misinterpreted507. Furthermore, the lack of clarity in job descriptions regarding actual day-to-day tasks can lead to misjudgments about suitability508. There's also a pervasive lack of understanding among recruiters and hiring managers about autistic strengths and how to effectively assess them509. I have experienced situations where my directness or need for clear instructions has been perceived as a lack of "team fit" or "initiative," rather than a difference in communication style510. Autistic people often have far more negative experiences with interviews, group tasks, and psychometric tests511. Many feel compelled to mask their autistic traits to succeed512. The fear of discrimination during recruitment is well-founded, as only about 35% of autistic employees are fully open about being autistic, and 1 in 10 do not disclose to anyone at work513. For those who do disclose, it's most common after starting a job, highlighting a persistent fear of discrimination during the recruitment process514. Additionally, employers' perceived barriers to hiring disabled people include concerns about the cost and practicalities of making workplace adjustments, and the accessibility of the application process. 515
○ Workplace Adjustments: Despite legal requirements for reasonable adjustments, their implementation is often inconsistent and insufficient516. My experiences have ranged from employers being unaware of their obligations, to a reluctance to implement even minor changes, to a complete misunderstanding of what constitutes an effective adjustment517. For example, requests for quieter workspaces, clear and unambiguous instructions, written rather than solely verbal communication, or flexibility in working patterns to manage sensory overload have often been met with resistance or a "one-size-fits-all" approach that fails to meet individual needs518. The burden often falls on the autistic individual to educate their employer, which is exhausting and can lead to a sense of being a "problem." 519 Around one-third of autistic employees felt unable to discuss their adjustment needs, and over a quarter of those who did request adjustments were refused, with more than 1 in 10 finding the adjustment poorly implemented520. Many autistic adults are unaware of their legal rights regarding reasonable adjustments. 521
○ Understanding Colleagues and Workplace Culture: Navigating unwritten social rules, office politics, and subtle communication cues has been a persistent source of stress and misunderstanding522. Misinterpretations of tone, body language, and sarcasm can lead to social isolation, feelings of being an outsider, and even direct conflict523. The expectation of constant social interaction, often during break times, can be draining and lead to burnout524. There's a significant lack of general autism awareness among colleagues, leading to unintentional exclusion or misjudgments based on autistic traits being perceived as rudeness, disinterest, or lack of capability525. This constant "masking" to fit in is incredibly tiring and unsustainable, ultimately impacting performance and mental well-being526. Employers and managers often report poor knowledge of autism and feel unprepared to identify and implement adjustments for autistic people527. Furthermore, 34% of employers believe an autistic person would be unlikely to fit into their team, and 28% think they would be unlikely to be a team player, perpetuating damaging stereotypes. 528
○ Personal Employment Experience with DWP and HMRC: Dealing with the Department for Work and Pensions (DWP) in the past has been very distressing and unhelpful529. My Universal Credit income was cut because of enrolling on a full-time education course at Cardiff & Vale College530. I had to drop out to make a new claim but was still required to commit to 14 hours of job search a week in 2018/19, including looking for opportunities in a 5 to 15+ mile radius, despite clearly evidencing participation in many extra-curricular opportunities through various charities531. My last full-time paid apprenticeship (employment) was with HMRC, from September 25, 2017, to April 30, 2018532. During this period, I experienced various challenges related to HR, interactions with colleagues, and a lack of available legal aid to address these issues. 533 I wished to highlight, as a personal experience, a forum post to the National Autistic Society detailing these difficulties. 534
70. A particularly unfortunate experience involved applying for an apprenticeship with Airbus: Space & Defence in Portsmouth535. I was genuinely interested in the opportunity to work closely on satellites associated with the European Space Agency, given my voluntary experience as a committee member for Cardiff Astronomical Society, regular attendance at lectures, and a deep love for space science536. My job coach in 2019 reaffirmed that if I were to attend the Airbus apprenticeship assessment, DWP would help cover my travel expenses537. I knew these would likely be extortionate, as rail fares are controlled by Europe, not UK rail, and I anticipated the significant challenge of commuting from the train station to the assessment venue, CEMAST538. The frustration was compounded by the thought that, after dropping out of the engineering course at Cardiff & Vale College in Autumn 2018 to maintain Universal Credit eligibility, I was unprepared for the Airbus assessment539. This led to a "meltdown" at the Portsmouth CEMAST campus during a practical exercise involving engineering tools and machinery540. Upon returning to my Job Centre appointment the following week, the job coach consulted their manager and then declined to reimburse my travel expenses, which exceeded £100+ (including evidenced rail/taxi fare tickets)541. Sadly, I had to escalate this with my Cardiff West MP, Kevin Brennan, whose caseworker helped clarify the issue and signpost avenues for reimbursement, though I ultimately did not pursue it542. This experience strongly reiterates the urgent need for dedicated DWP teams for autistic people, with clear and consistent messages about claim commitments and genuine support for developing skillsets to attain desired jobs, rather than simply fulfilling DWP policy statistics543. Forcing autistic people into unsustainable workplaces based on policy targets is likely to cause more harm, potentially leading to industrial disputes and personal crises. 544
71. Last year, I faced another distressing incident when I was sanctioned by DWP for failing to attend a mandatory telephone call appointment545. I immediately clarified over my Universal Credit (online) Journal, 15 minutes after the planned call, that it wasn't my fault, as I was multitasking and dealing with care responsibilities for both my disabled and elderly parents546. I offered my apologies, but they proceeded to initiate a sanction on my claim and sent me information on applying for hardship payments that would be repayable, despite my clear communication about the missed appointment not being my fault547. I had been regularly communicating with my local council and authority for care needs assessment, expressing my concerns for my father, who was showing signs of poor health, and my mother's mental health problems548. In my profound distress, I regrettably used strong language about wanting to "smash up" the local job centre, Alexandra House, Canton, Cardiff, and to "harm DWP staff"549. This was an expression of severe frustration after many years of what I perceive as terrible support from DWP, which I believe has contributed to my current levels of mental and emotional distress. 550
72. Thankfully, after speaking to my Cardiff West MP, Kevin Brennan's office, they immediately assisted by facilitating a Teams meeting551. In this meeting, I was able to elaborate on my executive functioning difficulties in balancing care responsibilities, the DWP sanction, and my continuing extra-curricular activities with St Vincent's Ely Bridge552. All sanctions were subsequently revoked, and I received an apology. 553
73. Coinciding with this period, my parents were both admitted to hospital after a highly distressing event: they had gotten lost returning from my sister's in Carmarthenshire, West Wales, and spent 11 hours on the road554. My sister had to call the local police to ascertain their whereabouts, and Gwent Police, specifically the Motorway Cops, eventually found my parents parked on the hard shoulder of the Heads of the Valleys road, Gwent, around 2 am555. My older brother and I had to collect them556. Gwent Police subsequently seized their vehicle, and both parents were admitted to hospital after lengthy home assessments by a GP and adult social services557. My father was diagnosed with vascular dementia and was placed in a care home, while my mother was treated for symptoms of mania and lymphedema. 558 These significant personal and family challenges highlight the overwhelming pressures that can impact an autistic individual's capacity to engage with employment-related processes effectively. 559
74. It is particularly striking and, to me, impressively ironic, when successive governments appear to struggle to improve outcomes for autistic people despite observations such as learning from a Westminster Parliament visit with UpRising UK in 2019 that my former employer, HMRC, was reportedly paying rent to an offshore company (Mapeley) to use its own offices, a Private Financial Initiative that had a lease of Treasury Estates for 20 years560. The response I received from senior Civil Servants in the 1922 Committee Room to this matter was "no comment." 561 This experience underscores a broader concern about resource allocation and priorities when vital support for autistic individuals faces funding challenges. 562
75. Like many of the topics raised, for autistic people to have secure employment with a good income, they must be able to afford the "luxuries" to thrive and to feel more independent563. However, due to the dynamic changes in the current digital and AI revolution, securing a career seems increasingly impossible with many big companies going into administration and the idea of "digital nomads" being promoted for those with good tech skills to "hop to hope" for better jobs564. This instability adds another layer of anxiety for autistic individuals seeking stable and fulfilling careers. 565
76. Furthermore, on a more local level, despite the negative experiences with the DWP job centre, I have benefited from the support of my Ely & Caerau (local Hub), Community for Work mentors, who now employ an autism specialist coach566. This organisation helped me undertake a number of skill-related workshops such as manual handling, first aid, and COSHH567. They also assisted me in attaining a Carrera "Vengeance" mountain bike from Halfords, supported a Level 2 accounting course (which I never completed due to Covid restrictions), and provided over £100 in Cardiff Bus tickets, all despite my disputes with DWP568. This local support demonstrates the profound positive impact that tailored, understanding, and practical assistance can have. 569
77. To meaningfully improve support for autistic people to find and stay in work, I propose the following recommendations, drawing upon insights from the Buckland Review and other sources:
○ Comprehensive and Mandatory Employer Awareness Training:
■ Focus on Autistic Strengths: Training should not just cover "challenges" but emphatically highlight the unique strengths autistic individuals bring to the workforce, such as attention to detail, logical thinking, pattern recognition, reliability, and innovative problem-solving570. The review notes that for certain jobs, autistic staff can be more productive than neurotypical staff, with productivity improvements ranging from 45-145%571.
■ Practical Reasonable Adjustments: Provide practical examples of effective and low-cost reasonable adjustments that can be implemented across various sectors and roles572. This should include guidance on communication styles, sensory considerations, structure, and flexibility. 573
■ Inclusive Recruitment Practices: Educate employers on autism-friendly recruitment processes, including providing interview questions in advance, offering alternative interview formats (e.g., skill-based tasks, written responses), and ensuring sensory-friendly interview environments574. Promote anonymized applications and focus on skills-based assessments over traditional CVs where appropriate575. The review suggests that traditional CVs and interviews do not work well for autistic people and that practical tests or short-term attachments are better576.
■ Neurodiversity Inclusion: Integrate autism awareness into broader neurodiversity inclusion training, fostering a culture that values cognitive diversity. 577
■ Mandatory Status: Consider making this training mandatory for HR professionals, line managers, and ideally, all staff within medium to large organisations578. Line managers are crucial for supporting autistic staff. 579
○ Enhanced and Specialised Employment Support Programs:
■ Autism-Specific Job Coaching: Fund and expand access to specialist job coaches who understand autism deeply and can provide tailored support throughout the entire employment journey – from job searching and application, to interview preparation, and crucial post-employment support in navigating the workplace580. This support should be long-term and flexible. 581
■ Supported Internships and Apprenticeships: Increase the availability and funding for autism-specific supported internships and apprenticeships, providing structured learning environments and a bridge into employment582. These should include dedicated job coaches and a clear pathway to permanent roles583. The Buckland Review highlights supported internships as a good route for autistic young people to develop work experience and skills, with some programs showing 60% of graduates moving into full-time jobs584. Apprenticeships are also highlighted as a valuable route, with a recommendation to remove the EHC plan requirement for English and Maths flexibilities, allowing self-declaration instead. 585
■ "Matchmaking" Services: Develop and promote services that actively connect autistic job seekers with employers who are genuinely committed to neurodiversity inclusion and have appropriate workplace cultures and roles586. This moves beyond simply listing vacancies to a more proactive and tailored matching process. 587
■ "Discovery" Model: Promote and fund the "Discovery" approach, which focuses on identifying an individual's skills, interests, and support needs in an ecological way, leading to highly customized job development and support. 588
■ Improve Access to Work: Publicise Access to Work more widely and ensure that application processes are accessible and efficient589. The review notes low awareness and significant delays in funding, which can hinder autistic people from starting and staying in work590. Pilots for the Adjustment Passport and Access to Work Plus should be rolled out nationally if successful591. The National Autistic Society also emphasizes increasing awareness and accessibility of programs like Access to Work. 592
○ Stronger Legal Enforcement and Clarity on Reasonable Adjustments:
■ Clearer Guidance: The Equality Act 2010 needs clearer, more specific statutory guidance regarding reasonable adjustments for autistic people, including examples of common requests and how to implement them effectively593. This should be easily accessible to both employers and employees594. The review notes that employers often report poor knowledge of autism and feel underprepared to implement adjustments. 595
■ Proactive Duty: Emphasise a proactive duty on employers to consider and offer reasonable adjustments, rather than placing the sole burden on the autistic individual to request them, especially when they may not even be aware of what is possible or permissible. 596
■ Accessible Redress: Improve mechanisms for autistic individuals to challenge non-compliance with reasonable adjustments without undue stress or financial burden597. This could involve an independent ombudsman or a simpler, less adversarial arbitration process for workplace disputes related to adjustments. 598
■ Public Sector Leadership: The Government must lead by example, ensuring all public sector organisations are exemplars in autism-friendly employment practices and reasonable adjustments. 599
○ Promoting Flexible and Remote Working: The pandemic demonstrated the feasibility and benefits of remote and flexible working for many600. For autistic individuals, this can significantly reduce sensory overload, social pressures, and commuting stress, enabling them to focus on their work strengths601. Policies should actively promote and support these working models where appropriate602. The review suggests that "inclusion by design" approaches, where the work environment is adapted for all staff, can reduce the need for individual disclosure. 603
○ Addressing Post-Diagnostic Support Gaps: The current significant gap in post-diagnostic support impacts an individual's ability to thrive in all areas of life, including employment604. Timely and comprehensive post-diagnostic support, including practical strategies for managing autistic traits in the workplace and navigating social situations, would significantly enhance employment outcomes. 605
○ Addressing Misconceptions and Stereotypes: A national campaign aimed at employers should be created to highlight the benefits of employing autistic people, including case studies of successful autistic individuals across various industries and levels606. This campaign should also include statistics on productivity improvements607. Dispelling inaccurate and unhelpful stereotypes and making clear the value autistic people can bring to an organisation is vital. 608
○ Improving Career Advisory Services: Careers advisors in schools, colleges, and national services should have a good understanding of autism and know how to appropriately support autistic individuals seeking employment or career changes609. Autistic people are less likely to have work-related experiences, and career advisors are often poorly equipped to support them. 610
○ Modernising Recruitment Practices: Engage with recruitment agencies to advise on the benefits autistic candidates can bring and how to remove barriers to recruiting them611. Share case histories of successful autistic staff612. Address the challenges posed by artificial intelligence and automated filtering processes that may penalise autistic candidates based on eye contact, mannerisms, or employment gaps. 613
○ Specialist Support for Autistic People: The government should focus more on specialist support for autistic people, providing adequate autism training to staff involved in employment support services614. This includes ensuring job outcomes are measured for specific conditions like autism and advocating for local commissioning of employment support programs, allowing disabled individuals to choose specialist providers615. Additionally, there's a need for voluntary engagement in work-related activities and the integration of employment support with mental health and other local support services. 616
78. In conclusion, addressing the employment challenges faced by autistic people requires a multi-faceted approach involving targeted training, enhanced support services, and more robust legal frameworks617. By implementing these recommendations, the Government can foster more inclusive workplaces that not only comply with legal obligations but also genuinely value and benefit from the unique talents of autistic individuals. 618
Sources:
[1] The Buckland Review of Autism Employment: report and recommendations - GOV.UK (https://www.gov.uk/government/publications/the-buckland-review-of-autism-employment-report-and-recommendations/the-buckland-review-of-autism-employment-report-and-recommendations)
[2] Written evidence - NAS (AUT0057) (https://committees.parliament.uk/writtenevidence/67636/html/)
[3] New data on the autism employment gap (https://www.autism.org.uk/what-we-do/news/new-data-on-the-autism-employment-gap)
79. My experiences, both personal and through campaigning for the Wales Autism Bill 2019, underscore the critical importance of incorporating the lived experiences of autistic individuals into policy development and implementation619. Only by truly understanding the day-to-day realities can effective and meaningful change be achieved. 620
80. The current landscape of autism support in the UK, particularly visible from my perspective in Wales, is fragmented, underfunded, and often fails to meet the diverse and evolving needs of autistic people. The significant waiting times for diagnosis, the persistent lack of autism-informed training across public services, the precarious funding for vital third-sector organisations, and the systemic barriers to employment, education, and genuine community inclusion are not merely inconveniences; they lead to profound isolation, mental health crises, and tragically, a reduced health span for autistic individuals. The recent bereavement of my father has further amplified how critical robust, person-centred support is during times of extreme vulnerability, and how current systems often fall short.
81. I urge the House of Lords Autism Act 2009 Committee to make strong, practical recommendations to the Government that will lead to tangible improvements in the lives of autistic people across the UK621. This includes ensuring adequate and sustained funding, consistent and mandatory autism-specific training across all sectors, accessible and person-centred support services, and a fundamental shift towards a needs-led, rather than diagnosis-led, approach622. Furthermore, the Committee should champion robust cross-governmental collaboration to address the interconnected nature of the challenges faced by autistic people, from health to employment, and recognise the significant long-term societal cost of inaction623. By embracing these comprehensive reforms, the Government can foster a truly inclusive society where autistic individuals are understood, valued, and empowered to thrive throughout their lives. 624
16th June 2025