AUTISTICA - WRITTEN EVIDENCE (AAC0105)

 

 

Summary

Autistica is the UK’s leading autism research and campaigning charity. Over the past two decades, we have advised NHS and Government bodies on autism policy. This response is also informed by focus groups covering 17 autistic adults, four of whom are also parents or carers for an autistic person.

 

The Autism Act and Autism Strategy include strong, relevant and ambitious aims. However, these have not been backed up by action. The current Autism Strategy has not been implemented beyond its first year, and the statutory guidance has not been updated since 2015 – creating a bizarre situation where the Strategy includes children and young people but the guidance does not. National-level commitments to enable the Autism Strategy to achieve its aims, including an action plan for autism research, appear to have been quietly dropped. The new Government appears to be neither implementing the current Strategy nor yet developing a new one, leaving autistic people and their families in limbo.

 

Autistic people face a crisis in assessment services, then a dearth of immediate and lifelong support. Failure to address these issues has created a wide range of other problems including increased hostility and disbelief of autistic people, high rates of inpatient detention, and inequalities in education, employment and the criminal justice system. Sadly, on average, autistic people die significantly earlier than their peers. This is not inevitable – by kick-starting targeted research, developing the workforce and resourcing services to make reasonable adjustments, the next Autism Strategy has the potential to be world-leading in autism identification and support.

 

While public awareness of autism has risen greatly since the Autism Act, focus group participants told us this had not translated into understanding and acceptance. In particular, participants consistently highlighted poor recognition of the breadth and diversity of the autistic population, especially women and girls as well as people from racialised communities. Addressing these inequalities should be considered as an additional policy aim in the next Autism Strategy.

 

Focus group participants often described harrowing experiences, from public spaces and housing through to healthcare and the criminal justice system. Notably, groups frequently struggled to find examples of what has gone well. However, they made a wide range of practical, and often low-cost, solutions to break down these barriers.

 

 

About Autistica

  1. We are the UK’s leading autism research and campaigning charity. Our mission is to create breakthroughs that enable all autistic people to live happier, healthier, longer lives. We do this by funding research, shaping policy and working with autistic people to make more of a difference. Over the past two decades, we have advised NHS and Government bodies on autism policy, feeding into the development of multiple Autism Strategies.

 

  1. The Autistica Insight Group is made up of autistic adults and parents or carers of autistic people. They work with us and our researchers to help ensure our work is meaningful, impactful and in line with community priorities. To support our response to this call for evidence, particularly Section C, we facilitated four focus groups covering 17 members of the Insight Group in May 2025. All participants were autistic, with four also the parent or carer of an autistic person. Their ages ranged from 18 to over 65. Eight (47%) identified as female, six (35%) as male and the remaining three (18%) as non-binary. 12 participants (71%) identified as White British, with the remaining five covering White (Other), Asian, British Asian and Mixed backgrounds. All quotes and views from the Insight Group have been anonymised.

 

Section A: Evidence about autistic people and what they need

 

1.a) What evidence is there about the numbers of autistic people (diagnosed and undiagnosed) in England and their demographic characteristics (for example, age, gender or ethnic background)?

  1. Prevalence estimates for autism vary widely. The most well-known is 1 in 100, as found by a 2016 analysis of the Adult Psychiatric Morbidity Survey which fully assessed participants and found a prevalence rate of 1.1%.[i] However, more recent estimates suggest that autism may be significantly more common than this, particularly as under-identification remains a concern.

 

  1. For example, one study of GP records in England[ii] estimated that as of 2018, 463,500 people (0.82% of the population) had a diagnosis of autism, and additionally between 435,700 and 1,197,300 people (0.77-2.12% of the population) may be autistic but undiagnosed. This study also found significant variation by age, with 2.94% (1 in 34) 10- to 14-year-olds having an autism diagnosis compared to only 0.02% (1 in 6000) people aged 70 or over, suggesting possible under-diagnosis in older age groups. Indeed, the Department for Education statistics on pupils with Special Educational Needs or Disabilities (SEND) suggest that around 2.6% (1 in 38) pupils in England have “autistic spectrum disorder” listed as their primary need.[iii],[iv]

 

  1. Similarly, a 2021 study based on National Pupil Database records[v] found an estimated prevalence of 1.76% in school-age pupils in England. This study also found racial inequalities, with prevalence highest in Black pupils (2.11%) and lowest in the Roma/Irish Travelers group (0.85%). Autistic pupils were more likely to claim eligibility for free school meals, which mediated the effect of race/ethnicity on autism diagnosis.

 

  1. All of the above studies also found substantially higher rates in men and boys compared to women and girls of comparable age. There are multiple potential factors behind this including under-diagnosis of women and girls; lack of recognition of traits common to autistic women and girls in assessment tools; and the probable hereditary nature of autism which could, like many genetic conditions, more readily affect males. A 2017 systematic review and meta-analysis estimated that the male-female ratio of children meeting criteria for an autism diagnosis is around 3:1.[vi] It should be noted that focus group participants reported considerable distrust in even these newer figures, given the continued under-identification of women and girls as well as broader dissatisfaction with diagnostic tools; this is explored further in question 11.

 

  1. As of March 2025, 224,382 people were waiting for an autism diagnosis in England. Of those, 137,977 (61.5%) are under 18 years of age.[vii] A recent Freedom of Information investigation by Autistica found substantial variation in diagnosis rates across the country, with different autism assessment services reporting assessment-to-diagnosis rates ranging from less than 20% to almost 100%.[viii],[ix]

 

1.b) How is the evidence on the numbers of autistic people (diagnosed and undiagnosed) in England and their demographic characteristics changing over time?

  1. As outlined under question 1a, autism prevalence estimates vary greatly, and have generally risen over time. Autism diagnoses have also risen exponentially, with one study estimating a 787% increase from 1998 to 2018.[x] Increased identification of autism has had a knock-on effect on the waiting list for NHS autism assessments in England, which has quadrupled in the past four years.vii

 

  1. There is a range of factors behind this increase. One significant factor is greater public awareness and understanding of the many different presentations of autism in recent years, leading to more autistic people recognising themselves in the information and depictions of autism they encounter. In turn, there is now greater provision for the assessment of autism in adults, recognising those who may have been missed in previous generations.

 

  1.         In particular, autism has been historically viewed as a male condition, and many common stereotypes around autistic people, their traits and interests are geared towards men and boys. This has led to an identification bias against women and girls which persists today.[xi],[xii] Subsequently, the estimated male-to-female ratio has decreased significantly in recent decades.vi The resulting increased identification of autistic women and girls makes a substantial contribution to the increased identification of autistic people overall.

 

  1.         We also understand more about autism from a clinical perspective, leading to changes in diagnostic criteria. For example, the DSM-5, published in 2013, allows a dual diagnosis of autism and ADHD for the first time, enabling people who meet criteria for both conditions to receive a diagnosis where they would previously have been excluded. Similarly, the DSM-5 criteria include sensory processing differences – a significant and often disabling autistic trait that may not always be obvious to others around the person – for the first time.

 

  1.         There are also societal factors behind the increase in diagnosis. Diagnostic criteria for autism requires what the ICD-11 calls “significant impairment in… important areas of functioning”, and this can change as the person’s environment changes.[xiii] An increase in diagnosis of autism may therefore indicate a world that is becoming more inaccessible, such that those who may have “got by” previously are now struggling enough to warrant a clinical diagnosis. This is seen most acutely in children and young people, where increasingly overstretched schools are reliant on per-child funding from Education, Health and Care Plans (EHCPs) to make basic adjustments that may previously have been offered more widely. Legally, a diagnosis is not required to offer and implement an EHCP; however, in practice, schools and local authorities routinely insist on a formal diagnosis to manage demand, which in turn drives demand for clinical assessment.

 

2.a) What evidence is there about what autistic people need from the Government and public services and the most important policy issues for autistic people and their families/carers?

  1.         In 2016, Autistica led a James Lind Alliance priority-setting exercise to find the top research priorities for autistic people and their families.[xiv] More recently, as part of the Embracing Complexity Coalition, we ran a similar exercise looking at research on neurodivergence more broadly.[xv] While there are important differences in what can be done through research and through policy, these projects may be indicative of the most pressing challenges faced by autistic and other neurodivergent people and their families. For example, key priorities across both projects include mental health, social care, diagnosis and inclusive environments. Additionally, the top priority under the Embracing Complexity exercise focuses on neurodivergent people with additional marginalised identities, which reflects increased recognition of these groups within the wider autistic community. Looking to policy, in 2021, Autistica partnered on a project exploring community priorities for suicide prevention.[xvi]

 

  1.         Services are not equipped to support autistic people at the number and range that we now know is necessary. Not only are waiting times for diagnosis unacceptably long, with years considered the norm,vii,viii but there is very little support following diagnosis. Many autistic people and families tell us they were discharged after assessment with little more than a leaflet, and a recent Freedom of Information investigation by Autistica found post-diagnostic support to be heavily reliant on basic information resources and signposting to local charities.viii Furthermore, there is no system in place to support autistic people in the years and decades following diagnosis. This gap in support underlies many of the most pressing issues facing autistic people, including high rates of inpatient detention[xvii] and, sadly, earlier mortality on average.[xviii],[xix]

 

2.b) How is this changing over time?

  1.         Recognition of autistic people – particularly adults, women and girls, and those from marginalised communities – has improved significantly since the Autism Act 2009 was first enacted. However, as waiting lists rise, it is becoming harder than ever to get a formal autism diagnosis. This comes a time when schools and other public services are increasingly requesting a formal assessment before providing support and adjustments, even though this is not required in law, creating further difficulties for autistic people and families.

 

  1.         In recent times, we have seen greater public awareness and understanding of neurodiversity. Unfortunately, we have also seen more overt hostility and disbelief around autism over the past year, both in the media and from senior politicians across the political spectrum; it remains to be seen what impact this will have on public attitudes and access to identification and support.

 

  1.         The COVID-19 pandemic, as well as the necessary restrictions to contain the virus, had a disproportionate impact on the autistic community.[xx],[xxi],[xxii] With support pathways for autistic people virtually non-existent, there was very little support for autistic people to adapt to the changes at different stages of the pandemic, leaving some effectively still in lockdown. On a more positive note, the resulting rise in home-based working and flexible working, and the proliferation of technologies to enable this, has greatly benefitted the employment prospects of some autistic people who could not cope with a more traditional office environment. However, for some autistic people, particularly those with a learning disability, these technologies and ways of working remain inaccessible.

 

3.a) What new evidence does the Government need in order to make new policies and to plan services for autistic people?

  1.         Research on meeting the support needs of autistic people, across the spectrum and across the lifespan, is still in its infancy. This means clinicians and other professionals are left guessing at what works – something that would not be acceptable in the general population. We are calling on the Government to direct strategic investment towards the research priorities of autistic people and their families, with a particular focus on new models of identification and support.

 

3.b) Who should collect this evidence?

  1.         As the UK’s autism research charity, we are playing our part to build the supports autistic people need, from trialling a new strengths and needs assessment toolkit[xxiii] to developing a platform to share community tips.[xxiv] However, we cannot do this alone. Building the necessary evidence base to develop a full, effective support pathway for autistic people, and then following this through to implementation, will require a co-ordinated effort led by Government. The current Autism Strategy committed to action plans on autism research and data which never materialised; the next Strategy is an opportunity for the Government to finally take action to improve the lives of autistic people in the long-term.

 

Section B: The Autism Act 2009, the Government’s autism strategy and the statutory guidance

 

4.a) In what ways have the Autism Act 2009 and successive Government autism strategies been successful or unsuccessful in improving support for autistic people?

  1.         The Autism Act 2009 was the first of its kind, and substantially raised the profile of autism – and particularly autistic adults – in policymaking. However, this has not translated into tangible change for autistic people and families in England. Over 15 years on from the Act, autistic people still face large gaps in support and some of the starkest inequalities in our society:

 

 

4.b) What are the reasons for this?

  1.         The Autism Act and Autism Strategy have ambitious aims, but successive Governments have failed to match this with action. For example, the current Autism Strategy has had no implementation plan since 2022 and, as we approach its final year, no accompanying statutory guidance. Key national-level enablers, including action plans for autism research and data collection, have never materialised. The Autism Act and accompanying policies also stand in relative isolation, without necessarily being taken into account in other policy initiatives across government.

 

5.a) How effective has the Government’s approach been to:

- Setting policy aims in each autism strategy;

- Funding and implementing actions to achieve those aims; and

- Evaluating progress?

  1.         Throughout the Autism Act’s history, the policy aims of the strategy have been strong, consistent, and broadly aligned with the priorities of the community. Autistic people and their families have had at least some input into each of the Autism Strategies, and we are proud to have also fed into the policy development process.

 

  1.         However, the implementation of the Autism Strategies leave a lot to be desired. The current Autism Strategy 2021-2026 was published in July 2021 alongside a one-year implementation plan which was never renewed. Work on national-level commitments was paused in autumn 2022 to prioritise the development of new statutory guidance. However, this was still yet to be published when the General Election was called last year, and the current Government does not appear to have resumed this work. Consequently, there has been little to no implementation of the current Autism Strategy for most of its life. For the past five years, experts by experience, professionals and charities alike have focused considerable energy and resource towards the commitments of the Autism Strategy only for them to be quietly dropped.

 

  1.         The Autism Act explicitly requires the Secretary of State for Health and Social Care to keep the Autism Strategy and associated statutory guidance under review. We are therefore disappointed that the current Government has yet to assess the effectiveness of the existing Autism Strategy,[xxxii] especially when they are also yet to begin work on the next one.[xxxiii]

 

  1.         Some focus group participants described a disconnect between the Autism Strategy and broader Governmental policies. In particular, several participants contrasted the Autism Strategy’s stated priority area of understanding and acceptance to the “scapegoating” of neurodivergent people and those with mental health conditions in Ministerial rhetoric around disability benefits.

 

5.b) Should the Government do this differently in future? If so, how?

  1.         The next Strategy must be backed by a plan for implementation, either in full on publication or year-on-year throughout its lifespan. Ideally, this should include evaluation of any new services or initiatives, with appropriate budget to enable this.

 

  1.         Focus group participants highlighted the need for the next Strategy to be truly cross-governmental and embedded in wider decision-making. Several expressed a desire to see future policies and communications critically evaluated against the aims of the Strategy.

 

6.a) How effective has statutory guidance to the Autism Act 2009 been in improving support for autistic people?

 

“It’s an all-age strategy which still has guidance for adults only.” – Focus group participant

 

  1.         As set out in paragraph 20, autistic people continue to face substantial inequalities and negative outcomes, almost 15 years on from the publication of the first statutory guidance in December 2010.

 

  1.         As set out in paragraph 23, statutory guidance relating to the current Autism Strategy has never been published. This means that the current statutory guidance to the Autism Act 2009 was published over a decade ago, in March 2015. Since then, the way Government and NHS bodies talk about autism has changed considerably in line with community preferences; the NHS has been restructured multiple times, such that many of the bodies referred to in the guidance no longer legally exist; and the Autism Strategy has been extended for the first time to children, who are not included in the 2015 statutory guidance.

 

6.b) To what extent are the NHS and local authorities achieving the duties set out in the statutory guidance?

  1.         Achievement of the duties set out in the statutory guidance is patchy, with some areas showing more progress than others. For example, it remains the case that many newly-diagnosed autistic adults are never made aware of their rights to a needs assessment under the Care Act 2014, despite the requirement for adult diagnostic pathways to directly link to local authorities to trigger such a needs assessment. Autism partnership arrangements vary significantly by area, with some more effective and accessible than others.

 

  1.         On a more positive note, the Reasonable Adjustment Digital Flag currently being rolled out across the NHS has the potential to greatly improve performance of relevant duties under the statutory guidance. Furthermore, the rollout of The Oliver McGowan Mandatory Training on Learning Disability and Autism has widened access to autism training, although focus group participants highlighted concerns over the quality of this training; this will be explored further in question 13.

 

6.c) How could the statutory guidance be made more effective?

  1.         The statutory guidance urgently requires a refresh to align with the wider scope of the 2021-2026 Autism Strategy, as well as current terminology and NHS structures. New statutory guidance should be published alongside the next Strategy, or as soon as possible afterwards, to prevent such a gap from forming in future. We would also welcome more accessible summary resources aimed at autistic people and families, to ensure everyone in the community knows what they have a right to expect from public bodies.

 

  1.         Focus group participants felt that autistic people, as well as regional policymakers and professionals, should be meaningfully involved at every stage of development for the next statutory guidance. They also suggested linking the guidance to funding, timelines, support for implementation and examples of best practice, alongside mechanisms to monitor outcomes and build accountability.

 

7.a) What processes are there for holding national and local bodies (including the Government, the NHS and local authorities) to account for progress against the autism strategy and statutory guidance?

 

“They’re talking the talk fairly well, say that this is what’s going to happen, but then it doesn’t actually... It’s a lot of blah instead of actual substance.” – Focus group participant

 

  1.         At a national level, accountability is sorely lacking – a sentiment echoed by our focus group participants. The 2021-2026 Autism Strategy has now seen five lead Ministers for this brief, four Secretaries of State for Health and Social Care and four Prime Ministers. Each of these changes has led to an apparent pause in Government-level work on the strategy and, at times, a sudden change in direction. The Autism Strategy and related work appears to be ultimately at the mercy of other governmental priorities as leadership changes.

 

  1.         At a local level, the mismatch between the current Autism Strategy and the outdated statutory guidance makes it much harder for everyone involved to understand what is expected of NHS bodies and local authorities, greatly hampering both effectiveness and accountability. Participants who have been involved in shaping local autism practice described a lack of oversight to ensure consistent implementation and monitoring. One participant described their local authority’s approach to co-production as misleading, as it conflates autistic people with non-autistic relatives and carers.

 

7.b) How could those processes be made more effective?

  1.         At present, the accountability framework for the Autism Strategy and related statutory guidance is unclear; the next Strategy is an opportunity to clarify and strengthen this. For example, we would strongly welcome annual public reporting from Government on progress against the Autism Strategy’s aims and commitments. This could also provide an opportunity for the Government to refresh its commitments for the following year.

 

  1.         Focus group participants suggested regular, independent audits of local and national performance, including on how autistic people are involved in planning and evaluating services. They also suggested clear standards for inclusive engagement, including representation of marginalised groups.

 

 

Section C: The Government’s priorities

 

8.a) Do you think [the current Autism Strategy priority areas] are the right priority areas? Why or why not?

  1.         Yes – the current Autism Strategy priority areas are wide-ranging and all remain relevant today. There are still some gaps, addressed in question 8b below. The next Autism Strategy must also retain the inclusion of broader enablers of these priority areas, including research and data collection.

 

8.b) Is there anything else that the Government should prioritise to improve autistic people’s lives?

 

“Because [my wife is] Black, she looked like an ‘angry Black woman’, not an autistic Black woman who was experiencing sensory overwhelm” – Focus group participant

 

  1.         One common theme from our focus group participants, which also ranked highly in the Embracing Complexity research priority-setting exercise,xv was intersectionality. The autistic community is as diverse as any other, and the barriers autistic people face vary by race, gender, class and other axes of marginalisation; we would welcome broader recognition of this across the next Autism Strategy. In particular, participants highlighted gender differences in autism and diagnostic bias; indeed, one study on autism diagnosis by gender found that girls were less likely to receive a diagnosis than boys even when controlling for similar levels of autistic traits.xi

 

  1.         Participants also felt that the next Strategy should include a greater focus on mental health. While mental health does feature in the current Strategy, it is subsumed within the broad category of “health and care inequalities” which, in the text of the Strategy, focuses largely on access to autism diagnosis itself. We would welcome more in-depth coverage of mental health inequalities, as well as broader access to healthcare beyond diagnosis, in the next Autism Strategy.

 

  1.         Participants expressed that there should be a stronger focus on housing for autistic people, because many autistic people are in precarious housing or homeless. This issue is explored in greater detail in question 14.

 

9.a) What are the main problems with public understanding and acceptance of autistic people?

 

"I think there's quite a lot of awareness of autism, but a lot of it is wrong awareness." – Focus group participant

 

  1.         Increased awareness of autistic people has not necessarily translated into understanding. Focus group participants acknowledged higher public awareness, but emphasised that this is often based on inaccurate stereotypes and media portrayals, which create rigid and unrealistic expectations of what autistic people are like. This widespread but shallow “awareness” leads many people to feel confident in their assumptions about autism; when someone does not fit these expectations, their diagnosis or needs may be dismissed. One participant attributed the relatively low impact of previous awareness campaigns to this disconnect, with high rates of public awareness being incorrectly conflated with deep understanding, openness and empathy. Another described this shallow awareness as “just a bit of a laugh”.

 

  1.         Many of our focus group participants reported receiving comments such as “you don’t look autistic”, or otherwise being disbelieved about their neurotype. Several participants expressed particular frustration at comments such as “we’re all a bit autistic”, which was felt to downplay the seriousness of autistic experiences. Participants also described being labelled as “high-functioning” because they can complete specific tasks, such as attending work or speaking fluently; for example, one participant reported receiving the comment “you're well-spoken and seemingly intellectually capable, so you must have no support needs.” This was felt to disregard the complexity of their support needs, particularly in areas like mental health, sensory regulation and executive functioning: “‘Everyone’s a bit autistic.’ – what does that even mean? It doesn’t take into account the fight I have to leave the house.”

 

  1.         In addition, over the past year we have seen increasing hostility towards autistic people and those awaiting assessment in the media, as well as from senior politicians across the political spectrum. Focus group participants discussed a growing societal narrative that autism is becoming “trendy”, undermining the serious challenges that some autistic people face. These narratives frequently conflate neurodivergence and mental ill-health, causing further confusion.[xxxiv] Unfortunately, this includes Cabinet Ministers in both the previous and current Government, both speaking in the context of proposed cuts to disability benefits.[xxxv],[xxxvi] We are deeply concerned that these narratives will detract from addressing the real challenges around diagnosis and support, which are already very difficult to access as set out in question 11 below. Focus group participants also expressed frustration at widespread media narratives framing claimants of disability benefits as fraudulent, which they told us perpetuates suspicion and discrimination against autistic people seeking support.

 

  1.         A 2022 YouGov poll commissioned by Autistica found that several outdated myths about autism remain prevalent in the UK. For example, over a third of adults surveyed incorrectly believed autism to be a learning disability, and almost 4 in 10 incorrectly believed that autistic people lack empathy.[xxxvii] Similarly, focus group participants described a range of narrow stereotypes that still form the dominant view of autism. Participants described the initial stigma of being introduced to autism as a “disorder” with medicalised language. The focus remains on what is “lacking” or “delayed” without recognising strengths or areas of advanced development, restricting early identification. On the other hand, some participants expressed frustration at strengths-based narratives which rely on simplified or stereotypical traits, such as intense focus (hyperfixation), encyclopaediac knowledge in a single area or high attention to detail. Although intended to promote more positive perceptions of autism, this framing was felt to exclude many autistic people who experience significant challenges in these areas, particularly those who are multiply neurodivergent (such as those who also have ADHD).

 

 

9.b) What is going well?

  1.         Since the enactment of the Autism Act 2009, general public awareness of autism has risen substantially. Our focus group participants reported that more people they speak to have heard of autism, and younger people in particular are more likely to talk about autism and neurodiversity. Participants acknowledged that in some environments, it has become more socially acceptable to disclose an autism diagnosis; however, many felt this progress had been undermined by shallow understanding and persistent stigma, as described in question 9a above.

 

  1.         Participants also described more autistic people in the public eye, as well as autistic characters in TV and film. However, this was not always viewed positively, with stereotyped portrayals of autism creating a false expectation amongst non-autistic people that every autistic person would be similar to a familiar character. Participants also highlighted that autistic representation in the media remained largely white and male. One participant noted that relatively little has changed since the 1988 film Rain Man, an early example of an autistic character now widely regarded as outdated and inaccurate.

 

9.c) How can public understanding and acceptance of autistic people be improved?

  1.         Focus group participants highlighted the need to move beyond basic awareness and prioritise depth of understanding and nuance; public education should be led by autistic people and reflect the diversity of the autistic population. Specific suggestions of areas to focus on include masking, understanding invisible struggles, tackling harmful stereotypes and the “you don’t look autistic” attitude.

 

  1.         Participants noted how difficult it can be to directly change attitudes through legislation and policy. However, governmental action can influence attitudes both positively and negatively; addressing the other barriers that autistic people face could have substantial knock-on effects for improving public understanding and acceptance. In particular, participants highlighted outdated approaches to diagnosis as a barrier to public understanding; this will be addressed in further detail in question 12. This influence includes policies and communications outside of the Autism Strategy which may impact autistic people; it is essential to ensure that policy discussions do not reinforce stigma or blame, but instead promote understanding, respect, and fair treatment.

 

  1.         Participants highlighted the role of the media in shaping understanding and acceptance of autistic people, with both positive and negative examples since the enactment of the Autism Act 2009. One focus group suggested initiatives to employ more experts by experience across media outlets, who would then be able to counter misinformation and stereotyped, harmful portrayals.

 

  1.         Although many of our participants described their autism diagnosis as greatly beneficial for them, as set out in question 11, there was consensus that this is not the only valid route to self-understanding and acceptance. Participants strongly advocated for a person-led, identity-first approach to autism acceptance.

 

10.a) What are the main problems with community inclusion for autistic people?

 

"I have to pretend that yes, it's fine to go for a drink in a noisy cafe and I really don't mind all the clattering and the sharpness of the noises and the different conversations that I can’t focus in on. Because otherwise I wouldn't see certain friends.” – Focus group participant

 

  1.         Public spaces are often inaccessible to autistic people. Around 9 in 10 autistic people experience sensory differences,[xxxviii] but this has rarely been considered in building and venue design, resulting in environments which are overwhelming or do not meet sensory needs for many autistic people. Other environmental barriers for autistic people include lack of advance information, hostility from other people, and limited communication options such as a requirement to use the telephone. Even where a venue is accessible, too often getting there is not; a new report by Autistica, funded by the Motability Foundation, highlights a wide range of barriers facing neurodivergent users of public transport.[xxxix] This all has knock-on effects for community inclusion, as autistic people are excluded from engaging in community activities and socialising with others.

 

10.b) What is going well?

  1.         As public awareness of autism has risen, we have seen an increase in efforts to adapt spaces to improve accessibility for autistic people, such as by designating a quiet space for recovery.[xl]

 

  1.         In 2022, the British Standards Institution published PAS 6463, which provides guidance on designing buildings to be accessible to neurodivergent people for the first time.[xli] The following year, the Royal National Institute of Blind People’s London office became the first building in the UK to officially adopt this guidance.[xlii]

 

10.c) How can community inclusion for autistic people be improved?

  1.         The Government, NHS bodies and local authorities can lead by example in making community spaces accessible to autistic and other neurodivergent people. We would strongly welcome the inclusion of PAS 6463 and plans for adopting this guidance across publicly owned spaces and services, in the next Autism Strategy. Many adaptations do not require large sums of money or a full rebuild; as a starting point, simply providing a dedicated quiet space can make a huge difference to an autistic person’s experience. One focus group participant recommended “sensory maps” for public spaces, highlighting variation in lighting, noise, smells and temperature across different spaces.

 

  1.         In particular, many of the Health Building Notes and Technical Memoranda concerning NHS buildings are significantly out of date and were written at a time when the needs of autistic people were highly unlikely to have been considered. Refreshing these standards is an opportunity to implement PAS 6463 as well as other evidence on meeting the needs of neurodivergent people.

 

  1.         However, more research is needed to provide architects and designers with the detailed information usually required for building specifications and other guidance. The next Autism Strategy must restart work on governmental initiatives for autism research, with accessibility a key element of this.

 

11.a) What pathways are there for the identification and support of autistic people, including: when they need it (including if they do not have a diagnosis); through assessment, diagnosis and post-diagnostic support; and throughout their lives?

  1.         Legally, under the Equality Act 2010, a formal clinical diagnosis is not required to receive reasonable adjustments at work or from other services; these can be provided based on need. Similarly, arrangements for SEND support or EHCPs for children and young people under the Children and Families Act 2014 are based on need, and a formal diagnosis is not required. However, in practice, the availability of these supports often depends on individual understanding and the available resources within a service. In particular, many autistic people and family carers tell us that schools and local authorities frequently insist on a formal clinical diagnosis before an EHCP is awarded and support is offered, arguing that they would otherwise not have the resources.

 

  1.         Initial identification of autism can occur through several routes, including observations by education, healthcare professionals or loved ones, as well as self-identification by the person themselves. Clinical autism assessments are ideally carried out by a multi-disciplinary team including a clinical psychologist. For children and young people, information from a range of sources is often required for referral, usually with significant involvement from the school. For adults, initial referral is typically made by a GP, although some areas now offer self-referral pathways. In 2023, NHS England published a national framework and operational guidance for all-age autism assessment pathways.[xliii] However, in practice, identification is highly variable, with many autistic people only identified after reaching a crisis point. One participant described getting into debt to access an autism assessment: "I asked for a referral for an autism assessment, which began many years of being refused a referral by GPs... I managed to get a credit card with a £9000 credit limit and I went private."

 

  1.         As set out in paragraph 7, NHS waiting lists for autism assessment are at record levels. NICE recommends that an autism assessment is carried out within 13 weeks, but as of March 2025, almost 90% of those waiting for assessment had already exceeded that;vii it is now considered normal to wait several years for assessment. As support from school, work and public services is so often withheld pending a formal diagnosis, and autistic people are so frequently disbelieved about their needs, many who can afford to pay for a private assessment feel they have no choice but to do so. A proliferation of companies has emerged in recent years to provide this service with little regulation and varying quality of assessment, with autistic people and families sometimes finding it difficult to convince NHS bodies, schools and public services to accept a diagnosis that has cost them hundreds of pounds.

 

  1.         Many of the larger private autism assessment services also hold NHS contracts; a recent Freedom of Information investigation by Autistica found that around 1 in 4 Integrated Care Systems in England had outsourced at least part of their autism assessment provision in this way.viii These services are therefore also available on the NHS anywhere in England via the NHS Choice Framework (more commonly known as Right To Choose).[xliv] As they typically have more capacity than in-house NHS services, an increasing number autistic people and families are exercising their Right To Choose in order to be seen in months rather than years. Ultimately, the patient’s local Integrated Care Board pays for this; money that could be better spent improving local NHS services so that autistic people and families are not forced to go elsewhere. A proposed change to the NHS Payment Scheme that would have capped these costs was abandoned earlier this year due to the potential knock-on effects for access to autism and ADHD assessments.[xlv],[xlvi]

 

  1.         Post-diagnostic support varies significantly by area and is often reliant on local charities. A recent Freedom of Information investigation by Autistica found that for both children’s and adults’ services, the most common form of post-diagnostic support was “signposting”, followed by “information and resources” – often in the form of a website. While many services also offer psychoeducation or peer support, these were much less common. Over a fifth of children’s assessment providers, as well as one third of adult assessment providers, told us the support offered after diagnosis is no different to what is ordinarily available without a diagnosis.viii Autistic people are generally discharged on diagnosis or, where available, after the brief post-diagnostic support period; there is no clear route back to autism-specific services in the years and decades that follow. Where services do exist, they are often siloed and poorly co-ordinated, leaving autistic people and their families to act as their own caseworkers.

 

11.b) What are the strengths of those pathways?

 

"It gives you permission to be different. It gives you avenues to talk to other autistic people... and learn a little bit more about how other people cope with the problems they have." – Focus group participant on the benefits of an autism diagnosis

 

  1.         Many focus group participants highlighted the ways in which receiving a diagnosis has helped them. The biggest theme was simple validation; as one participant put it, “it just made me realise that there wasn’t something intrinsically wrong with me”. This was in part driven by prior disbelief and dismissal, which deterred one participant from resources that are nominally open to all:

 

"I would never have wanted to engage with the National Autistic Society, for example, without a diagnosis, because I wouldn't have felt valid, because I've been told my entire life that I just need to try more hard to be normal" – Focus group participant

 

Participants also reported greater self-understanding, opportunities to talk to and learn from other autistic people, and improved access to reasonable adjustments at work as advantages of a formal autism diagnosis.

 

  1.         Support and adjustments are, at least in theory, available based on need rather than diagnosis. NHS England’s national framework for all-age autism assessment pathways reiterates this, highlighting that a formal clinical diagnosis is not necessary to access support at school or from public services.xliii When implemented correctly, this means that adjustments can be implemented as quickly as possible and that some autistic people will not need a formal assessment at all, freeing up space for those who would most benefit from clinical support.

 

11.c) What are the main problems with those pathways?

 

  1.         While support and adjustments do not require a clinical diagnosis in theory, this is often requested in practice. In particular, many autistic children and families find themselves caught between overstretched schools refusing to offer support without a clinical diagnosis, and overstretched clinical services refusing to provide an assessment as adjustments have not been made by the school.

 

  1.         Several focus group participants described either being directly refused a referral for autism assessment by healthcare professionals, or not being identified as potentially autistic when under NHS care for other reasons. Again, race and gender were often seen as significant factors in this under-identification:

 

“She had two brothers diagnosed in the early years and she was presenting similar issues, but she was just basically being flagged up with having attitude issues, being problematic, not focusing enough.”

 

A number of participants highlighted an apparent trend of women being identified only during moments of crisis, such as postnatal depression, relationship breakdown or difficulties relating to menopause.

 

  1.         NHS autism assessment provision is not fit for purpose. Waiting times are unacceptably long, forcing too many autistic people and families to pay for a private assessment with little oversight, where future acceptance of any diagnosis is a lottery. Although Right To Choose has helped many autistic people and families in the short-term, over-reliance on this has been costly for NHS services and can only be a sticking plaster, with even these services now operating with waiting lists well over the NICE recommendation.

 

  1.         As set out in question 10, the crisis in autism assessment services has begun to drive a culture war around autism diagnosis, self-identification and those awaiting a formal assessment. Autistic people are frequently and increasingly disbelieved which, in turn, further drives up demand for assessments even from people who would otherwise be content to self-identify without a clinical diagnosis.

 

  1.         Autistic people and families frequently report poor satisfaction with the assessment process, citing long waiting lists, a negative experience of focusing solely on their challenges and perceived “deficits”, and a lack of support at the end.[xlvii],[xlviii] Focus group participants expressed particular dissatisfaction with current screening and assessment tools; a problem also identified by a recent Autistica report exploring the views of clinicians.[xlix] As one focus group participant put it, “we’re using tools that no one is happy with.” This was perceived to add to a narrow profile of autism that does not reflect the broader spectrum, particularly non-White people as well as women and girls:

 

“I hate the ‘oh well, autistic women just mask better, that’s why it’s so hard to identify them’… You just need to shift your criteria.”

 

  1.         As set out in paragraph 62, immediate post-diagnostic support is a postcode lottery and lifelong support is essentially non-existent; this gulf in support drives other major challenges facing autistic people, including high rates of inpatient detention, school distress and unemployment.

 

12.a) How can the Government improve assessment, diagnosis and post-diagnostic support for autistic people?

  1.         The Government must take immediate action to address the autism assessment crisis. This will involve upscaling the workforce, for example through increasing funded placements for clinical psychology, encouraging specialism in neurodivergence, and clarifying how services will be commissioned and funded to meet local demand. We are also calling on the Government to provide sufficient resources and information to ensure local authorities, schools and other public services can make necessary adjustments based on need, without having to wait for a formal diagnosis.

 

  1.         In the long-term, we must radically change our approach to identification and support for autistic people – which means research to identify effective new models. In particular, focus group participants expressed a desire for assessment tools and criteria which more accurately reflect the full spectrum of autistic experience, including gendered, cultural, and age-related differences. We are calling for a single national strategic initiative for autism research, with a focus on identification and support.

 

  1.         In addition to a Government-led research initiative, the forthcoming refresh of NICE guidelines for autism provide a key opportunity to reflect new knowledge around presentations of autism and the diversity of the autistic population, as well as demand signalling where there are still evidence gaps.

 

  1.         Addressing the support gap is key to tackling many of the challenges faced by autistic people and their families, and is likely to save money in the long term.[l] In particular, Paediatric Autism Communication Therapy, which takes a neuro-affirmative approach to improving communication by adapting parent/caregiver communication style to match the child, is already available for rollout across the NHS.[li],[lii],[liii],[liv] We are calling for the establishment of a central fund to launch this and other new supports which are proven to be effective into practice within the NHS, social care and education systems, for example by allowing services to provide cover so that clinicians can undertake the necessary training.

 

  1.         NHS bodies should be sufficiently resourced and equipped to implement the 2023 framework for an all-age autism pathway, including immediate post-diagnostic support. As part of this initial provision, participants suggested improving access to keyworkers, particularly in the initial post-diagnostic period. This role would not necessarily require specialist clinical expertise, but could support with making referrals and co-ordinating care from other services. Focus group participants also suggested changes to ensure movement between areas does not lead to having to restart the diagnostic process.

 

 

12.b) How can the Government improve the identification and support of autistic people when they need it (including if they do not have a diagnosis?)

 

“My journey was entirely by myself.” – Focus group participant

 

  1.         Legally, existing supports and reasonable adjustments are already accessible without an autism diagnosis; but in practice, services frequently insist on a diagnosis first as a way of managing limited resources. As set out in paragraph 71 above, the Government should ensure that services have the resources they need to offer support and adjustments based on need in line with legislation.

 

  1.         As set out in paragraph 72 above, in the long-term the Government must innovate to find more effective and efficient models of identification and support through research.

 

  1.         Even when autistic people are in crisis, emergency healthcare is often inaccessible. Questions 13 to 15 explore the barriers and facilitators to healthcare in greater detail.

 

 

12.c) How can the Government improve support for autistic people throughout their lives?

  1.         The Government must take the initiative in kick-starting research into the most pressing support needs of autistic people – and has the opportunity to be world-leading in doing so. As set out in paragraph 19 above, Autistica are already supporting a range of projects in this area, and would be delighted to work with Government bodies in upscaling these where appropriate.

 

  1.         In particular, Autistica and NHS England are co-funding a randomised controlled trial of regular health checks for autistic adults led by Newcastle University; results from this trial are expected in June.[lv] The Autism Strategy 2021-2026 commits to rolling out health checks for autistic people when a suitable model is found; the new Strategy should renew this commitment.

 

13.a) What are the main problems for autistic people in accessing healthcare?

 

“I still haven't managed to get my son in front of a GP. Because the process is so difficult to access the GP, he must be able or I must be able to make the call at 8 in the morning and have him available next to me to speak to the doctor... And this is even after NHS crisis lines have told us he needs to go to the doctor." – Focus group participant

  1.         Autistic people face a wide range of barriers to accessing healthcare. Many autistic people struggle with recognising and interpreting bodily signals (known as interoception) and/or with identifying and understanding emotions (a difficulty known as alexithymia), and may therefore take longer to recognise the need to seek healthcare.

 

  1.         When autistic people do seek healthcare, it is extraordinarily difficult to get an appointment, with GP practices typically requiring either an 8:00am phone call or a complex online form. In one study, over 6 in 10 autistic adults reported difficulty making appointments by telephone as a barrier.[lvi] With GP practices operating on very limited resources and often looking for specific wording or particular signs of distress, and autistic people forced into communication methods they find difficult at best, many are triaged incorrectly at this stage.

 

  1.         The sensory environment of healthcare spaces is often overwhelming, with busy, noisy waiting rooms and fluorescent lighting, and typical mitigations such as noise-cancelling headphones may not be feasible for patients waiting to be called in for an appointment. This means that many autistic people arrive at appointments already in distress, and less able to communicate and advocate for their needs than they might otherwise have been.lvi,[lvii],[lviii] One focus group participant vividly described the impact of the sensory environment for a recent appointment:

 

“I went to this new building... where everything about that building was the worst possible scenario you could imagine, for someone that is autistic and has sensory needs. It actually made me sick physically, almost, dealing with the lights and then the disgusting sound that was coming from the aircon that can't be turned off, before going into a room with office furniture stacked and boxes, and noises outside, and it was too hot and it was horrendous. It was a complete waste of two hours of her time and my time, and I lost my day because it took me that long to get myself back together again."

 

  1.         Autistic people frequently report difficulties understanding and being understood by healthcare professionals.lvi,lviii,[lix] Autistic people often express pain and distress differently, which may be missed by clinicians looking for stereotypical expressions of pain and distress.lviii Several focus group participants reported being disbelieved by healthcare professionals, which some referred to as “medical gaslighting”. For example, one participant with a formal diagnosis of autism was later told while under inpatient care that they could not be autistic because they made eye contact. Another recounted an experience of midwives questioning whether an autistic patient should be assessed for mental capacity after requesting a home birth, which was not a consideration for neurotypical patients making similar choices.

 

  1.         Several focus group participants told us they felt they had no choice but to seek private healthcare, both for the autism assessment process itself and for other health problems. For many autistic people and families, this is not financially viable.

 

  1.         Some participants were critical of complaints services, describing them as “pointless”. Participants described a power imbalance between patients and clinicians, with limited recourse where care is denied or mishandled.

 

13.b) What is going well?

  1.         NHS England is currently rolling out the Reasonable Adjustment Flag for patient records, enabling patients and professionals to record and share details of reasonable adjustments across different services within the NHS.[lx] If implemented correctly, this could help autistic people access the adjustments they need without having to repeatedly ask every time – a process which is in itself often inaccessible given the limited communication options available.

 

  1.         As set out in paragraph 80, Autistica and NHS England have co-funded a randomised controlled trial on health checks for autistic adults by Newcastle University, with results expected in June. The 2021-2026 Autism Strategy already commits to rolling out health checks for autistic people when a suitable model is found. This will ensure emerging health problems are identified and treated earlier, without the delays associated with alexithymia and poor interoception and without the barriers autistic people face in booking an appointment.

 

  1.         Another significant positive development since the 2021-2026 Autism Strategy was published is the new legal requirement under the Health and Care Act 2022 for health and care professionals to undergo autism and learning disability training, and the development of The Oliver McGowan Mandatory Training on Learning Disability and Autism for this purpose. However, several focus group participants – some of whom are involved in co-delivering the training or are in careers which require the training – raised concerns about its effectiveness and content in its current form. These included a conflation of autism and learning disability, particularly combined with a lack of acknowledgement of other co-occurring neurodivergence, and a focus on emotionally evocative content over in-depth practical understanding:

 

“Everyone watches the video and goes ‘oh, that’s really sad’ and all it’s promoting is that people have watched that video. It doesn’t share any awareness to healthcare workers.” – Focus group participant who has undergone mandatory training as a healthcare worker

 

  1.         Many GP practices are now offering communication via the NHS App or other online services, which may be more accessible to autistic people who struggle to use the telephone. However, this is not without its problems. Some practices have switched entirely to online communication, with no option to speak to a person; this is also inaccessible for some autistic people, particularly those with co-occurring learning disabilities. Some online services are designed to prompt a callback from the practice, which means the telephone remains a barrier not just for booking the appointment but for the appointment itself. Those practices which can be contacted in multiple ways do not always use all methods equally or make clear which methods are suitable for which situation; this leads to, for example, autistic people who find phone calls difficult being funnelled through an online form which in practice will never result in an appointment offer.

 

  1.         Some NHS trusts have begun using tools such as “neurodiversity passports” and key working teams to support autistic people and improve co-ordination between services. This was well-received by focus group participants as a step towards more joined-up services; however, it should be noted that “passports” in healthcare show mixed evidence of effectiveness, and rely heavily on individual professionals reading and understanding the document.[lxi]

 

13.c) How can access to healthcare for autistic people be improved?

  1.         Many GPs report low confidence and understanding in supporting their autistic patients.[lxii] We are calling for the development of a GP with Extended Role position on neurodivergence, or similar schemes enabling local champions to support their colleagues to do the right thing.

 

  1.         No single communication method can ever be fully accessible. GP practices must be sufficiently resourced and equipped to allow appointment booking over the phone, online or in person, and for patients to have a similar free choice for the format of the appointment itself.

 

  1.         As set out in paragraph 55, relatively small adjustments to the environment can make a big difference to accessibility. This could include, for example, providing a quiet area to wait in, or allowing patients to wait outside or elsewhere and contacting them when the clinician is ready. One focus group participant suggested setting up specific primary care clinics at quieter times for those who need it.

 

14.a) What are the main problems with access to community support for autistic people?

 

"There's nothing. There's just nothing. There's no housing, there's no social support, there's no services." – Focus group participant

 

  1.         As set out in paragraph 62, community support for autistic people is often non-existent. Where it exists, it is often restricted to very specific age groups, or tied to learning disability services and unsuitable for autistic people without a learning disability. Although the Autism Strategy statutory guidance sets out that newly-diagnosed autistic adults should be offered a care needs assessment under the Care Act 2014, in practice this is relatively uncommon. Too often, autistic people only become known to services when they reach a crisis point. While dynamic support registers are intended to identify autistic people and people with learning disabilities before they are admitted to inpatient care, the majority of autistic inpatients were not previously on a dynamic support register.xvii

 

  1.         Focus group participants highlighted a lack of housing options meeting the sensory, social and accessibility needs of autistic people as a particular concern. Some described having to move into housing designated for people with learning disabilities or mental health conditions which was inappropriate for their needs. One participant “had a social worker ask me how bothered I am about my marriage, because they only had housing that was for single people.” These barriers were exacerbated further for participants with co-occurring physical disabilities due to a lack of wheelchair-accessible housing.

 

  1.         Participants also expressed difficulties accessing financial support. Assessments for were held in buildings described as “hard to reach” and “not autism-friendly”, with no flexibility around location or format. Although autism is lifelong, some participants reported a constant cycle of re-assessment. Some participants noted that the current system does not differentiate between those who are temporarily unable to work, who would benefit from tailored support to sustainably return to employment, and those who are unlikely to ever be able to work. The process of applying for PIP in particular was described as demeaning, with participants describing a lack of understanding of autism and raising their suspicions that decisions were made before a full assessment is carried out. One participant who had suffered from an eating disorder described seeing “appeared well-nourished” in their assessment notes, although eating disorders occur in people of any size. Participants noted the high success rate of appeals, but highlighted that many autistic people are unaware of their right to an appeal or find the process too complicated to navigate.

 

14.b) What is going well?

  1.         Lack of community support is now regularly recognised as a factor in other challenges faced by autistic people, and particularly high rates of inpatient detention, in political debate – including the 2021-2026 Autism Strategy. Long-awaited reforms to the Mental Health Act, including the removal of autism as sole grounds for detention under the Act and a duty on Integrated Care Boards to ensure the needs of autistic people can be met without recourse to detention, are expected to pass in the coming months.

 

  1.         As a general rule, focus group participants struggled to find positive examples of access to community support. However, one participant praised their previous access to “floating support”, where a keyworker supported them for a few hours a week for a period of six months. Nevertheless, there were significant barriers to referral due to challenges accessing an autism assessment, and they ultimately lost access to this support after moving to a new region.

 

14.c) How can community support for autistic people be improved?

 

"My short answer to that is: Have some." – Focus group participant responding to this question

 

  1.    We can no longer leave autistic people to fall through the cracks. The Government must work with NHS bodies and local authorities to clarify how community support for autistic people will be commissioned – and funded – to meet local needs.

 

  1.    The Autistica Support Plan sets out what a lifelong support plan for autistic people could look like.[lxiii] However, there are still substantial evidence gaps. As set out in paragraph 72, community support should be a key priority for a national strategic funding initiative for autism research. Focus group participants also expressed a desire for local peer networks and services for autistic people to meet others and access practical support.

 

14.d) How can the use of inpatient care be reduced?

  1.    The use of inpatient care can only be reduced through ensuring adequate community support. One participant working in mental health settings noted that inpatient units are often used not because they are the right setting, but because services do not know what else to do: “Who are we doing the admission for? Is it in order to get them the help they need? Or are we saying, actually it’s a way for us to control and make them as convenient to us as possible? Because ultimately, that’s what it feels like.” Participants suggested that services involve autistic people in decisions about their care.

 

  1.    We strongly welcome the Government’s Mental Health Bill, which aims to reduce inpatient detention of autistic people in favour of support in the community. However, it cannot achieve these aims unless the gap in community support is addressed. Indeed, the Government has been clear that the provisions relating to autism “will only be switched on when systems are able to demonstrate sufficient level of community support to safely move inpatients from hospital back into their community”[lxiv] – yet there does not appear to be any concrete plan to bring this community support into being. As set out in question 14c above, changes to commissioning and targeted research are vital to build community support and autism-informed mental health care, reducing the use of inpatient care.

 

15.a) What are the main problems with the quality of healthcare and community support for autistic people?

  1.    When autistic people do overcome the above hurdles to accessing healthcare and community support, it is often of a poorer quality than that received by their non-autistic peers. Diagnostic overshadowing is common, with anxiety in particular often dismissed as “just part of autism”. One focus group participant, who has a chronic autoimmune condition, described a clinician automatically attributing their gastrointestinal symptoms to sensory sensitivities and the gut-brain barrier following their autism diagnosis. On the other hand, autistic distress can sometimes be mis-identified as mental illness, leading unidentified autistic people down a treatment pathway which is likely to be inappropriate.

 

  1.    Autistic people and families frequently tell us about gaps in service provision, being punted around different services without meeting eligibility criteria and being told “we don’t do autism” by mental health services even when seeking help for a co-occurring mental health condition. Services often seem to view autistic people as “somebody else’s problem” – there is an apparent assumption that another, more specialist service is available to support autistic people, when in reality this rarely exists. Several focus group participants, particularly older participants, reported that their medical records had been lost, further disrupting care co-ordination.

 

  1.    Autistic people also experience worse outcomes from healthcare treatments themselves. Co-occurring conditions in autistic people are poorly understood; for example, autistic people are more likely to experience treatment-resistant epilepsy,[lxv] which plays a significant role in premature mortality for autistic people, particularly those with learning disabilities.xviii Similarly, mental health therapies are largely designed for neurotypical people and may need to be adapted for autistic people,[lxvi] and existing service provision does not always allow for this.[lxvii]

 

15.b) What is going well?

  1.    In mental health in particular, more mental health services and professionals are becoming aware of the high proportion of autistic people using their service and the potential need to adapt for this. However, this does not always translate into confidence in doing so.lxvii

 

15.c) How can the quality of healthcare and community support for autistic people be improved?

  1.    Further research is needed on effective treatments for a range of co-occurring conditions common in autistic people, particularly epilepsies and anxiety disorders. This should be a key priority for a strategic national initiative for autism research. As set out in paragraph 71 above, upscaling the available workforce and clarifying commissioning arrangements are also crucial to high-quality healthcare and community support.

 

  1.    Focus group participants strongly emphasised the need for joined-up services, bringing together healthcare, education, housing, employment and financial support. Without integration, autistic people are left to navigate fragmented and inconsistent services that often fail to communicate or coordinate with each other. Even where funding and workforce for dedicated services is unavailable, “floating support” including short-term case work from keyworkers could provide a more feasible solution.

 

  1.    As above, participants called for housing options that are available to, affordable for, and suitable for the needs of autistic people. This should reflect the diversity of the autistic population, including those with physical access needs and those with partners and families.

 

  1.    Several participants highlighted the ability to self-refer to services as essential, given the challenges with being believed and referred by GPs and other services. While some areas and services (particularly mental health services) allow this, others do not, creating inequalities. Community support services should be sufficiently resourced and equipped to manage self-referral.

 

 

16.a) What are the main problems for autistic children and young people in accessing education?

 

"About EHCPs - it's what I call the accountability lie. Nobody is actually taking accountability for the people that are saying they will do these things.” – Focus group participant

 

  1.    As set out in question 11 above, autistic children and young people face significant barriers to accessing support in school. In practice, this is often dependent on a formal clinical assessment which may take several years to receive, then a further lengthy process of applying for an EHCP. Focus group participants described the substantial pressure on families to act as caseworkers and advocates for their children, and expressed concern for the autistic children and young people who do not have supportive relatives able to expend the considerable time and energy required to fight for them. Even after this amount of bureaucracy, many autistic children and young people are still denied the support they need.

 

  1.    Schools are often intense sensory and social environments; indeed, one focus group participant described having to leave a job in education because they were unable to cope with the school environment as an adult. However, participants told us about difficulties getting the needs of their children recognised because they appear academically able; needs outside of the academic work are still too often ignored. Meanwhile, those who exhibit distressed behaviours are frequently excluded, with knock-on effects for access to identification and support.

 

  1.    Participants described a lack of understanding from staff, including understanding of the varying and fluctuating presentations of autism. One participant described the exclusion of their child from school trips due to situational mutism as a barrier, noting that “the anxiety level of not being able to communicate in an unfamiliar situation is just through the roof.” Another noted a lack of recognition of the “spiky profiles” of neurodivergent children and young people; for example, a teenager who excels in academic subjects may still require toys or comfort objects to manage anxiety around socialising, something typically associated with younger children.

 

  1.    Focus group participants praised support from teaching assistants but highlighted a “lottery” of access depending on school budgets. With funding tied to EHCPs but lengthy delays in accessing these, teaching assistants employed to provide 1:1 support to one pupil with an EHCP often find themselves having to support multiple pupils, meaning nobody gets the full level of support they need.

 

 

16.b) What is going well?

  1.    Theoretically, the Children and Families Act 2014 enables support and reasonable adjustments to be made in education without the need for a formal clinical diagnosis. If implemented correctly, this would ensure that children and young people received the support they need as quickly as possible. In practice, this is rarely the case; the challenges children and young people face in obtaining support are set out above and well-documented elsewhere. However, any changes to the current system should retain this core principle of support based on need rather than diagnosis.

 

  1.    Some participants described isolated pockets of best practice in local schools and academies. These range from offering every child a tablet device with learning resources and communication tools, through to much less expensive adaptations such as sensory tools and flexible seating. One participant described specialist autism-friendly classrooms where pupils are permitted to bring along a friend who is not necessarily autistic, reducing stigma.

 

16.c) How can access to education for autistic children and young people be improved?

  1.    As set out in paragraph 71, the Government should ensure schools and other educational establishments are sufficiently resourced and equipped to offer basic support and adjustments without the need for a formal diagnosis or full EHCP provision. This will inevitably mean increased funding for school staff, to allow for smaller class sizes, teaching assistants, and safe unrestricted access to toilets and recovery spaces.

 

  1.    Adjustments to the sensory environment, or flexibility in the use of tools to mitigate sensory distress, can greatly improve accessibility for autistic children and young people. However, focus group participants stressed the importance of making this support and flexibility open to all, to avoid “singling out” autistic pupils who may then avoid taking advantage of this support for fear of “being completely socially isolated.”

 

  1.    As set out in paragraph 55, offering a designated quiet space for recovery can greatly improve accessibility for autistic people, including in education. There have been a number of recent high-profile incidents of establishments misusing the concept of a “quiet room” or “calming room” to mask abusive practices. Quiet spaces should be for pupils to choose to withdraw from an overwhelming environment and recover safely as and when they need to; it is not, and should not be used as, a form of punishment, restraint or seclusion.

 

  1.    Families should not be left to fight for support alone. Focus group participants called for greater accountability in the EHCP process, initiatives to improve staff understanding of a range of autistic traits and presentations, and wider community support to help families navigate the complicated process of accessing support for their child.

 

17.a) What are the main problems for autistic young people in transitions to adulthood (including the move from children’s to adult’s services)?

 

“One borough, if the child passes a test, they get an AAC device. The council pays for the app on it... When they age out, that's it. They don't get communication anymore. You've got to go buy your own." – Focus  group participant

 

  1.    The “cliff-edge” when autistic children reach adulthood is well-known in the autistic community. Focus group participants described an abrupt, arbitrary cut-off, triggered by rigid age thresholds (typically 16, 18 or 25) rather than the readiness or needs of the person. Support for children and young people relies heavily on schools and educational establishments, creating a gap when the person leaves education; often, there are simply no relevant services for adults available. The impact of this is particularly acute for those who do not have families able to continue to support them into adulthood.

 

  1.    Those who continue into education have more options for support, such as Disabled Students’ Allowance for those who enter higher education. However, this requires significant self-navigation for a group who will be unused to managing these processes themselves and who may find them inaccessible.

 

  1.    To make matters worse, this comes at a time of significant upheaval for many autistic young person; they are likely to be moving away from familiar school routines towards employment or further and higher education, and taking on more responsibilities for managing all aspects of their life. In many cases, autistic young people will be leaving the family home and, potentially, into a new area with completely separate service provision; health records may be lost, and the person may not immediately build rapport with or be understood by new staff. Several participants described how, at 18, they were suddenly expected to manage healthcare, education and benefits systems with little to no preparation. Participants also highlighted a lack of preparation for “life skills” from housework tasks to navigating social norms as an adult. This situation is exacerbated for those who do not have supportive families able to help with this transition, such as care leavers.

 

17.b) What is going well?

  1.    Under the Children and Families Act 2014, EHCPs run to age 25, allowing more time for the young person to transition into adulthood and secure employment or an educational placement. However, as set out above, EHCPs are often difficult to access. Ultimately, until a lifelong support pathway for autistic people is developed, this can only delay the cliff-edge rather than remove it.

 

17.c) How can transitions to adulthood for autistic children and young people be improved?

  1.    The transition to adulthood is particularly difficult in large part due to the lack of support for autistic adults. As set out above, targeted research investment and changes to commissioning arrangements are needed to develop support services for young people to transition into. Specific recommendations to help autistic young people to move from education to work will be covered in question 18c below.

 

18.a) What are the main problems for autistic young people in the move from education to work?

  1.    Autistic young people often face low expectations and negative assumptions about their future. One focus group participant described parents being told their child is “never going to learn to read because they don’t speak”. Another participant recounted a professional doubting that they were autistic because they are studying medicine.

 

  1.    At the same time, many autistic people are excluded from opportunities such as work experience, volunteering or extra-curricular activities at school, or a wider lack of support leaves them too unwell to take advantage of these opportunities. Furthermore, many of the typical “first jobs” that young people embark on alongside education, such as customer service, retail and food, are based in sensory environments that autistic people may find difficult and heavily reliant on neuro-normative social skills. This all puts autistic people at an immediate disadvantage when it comes to moving from education into work, as they have had less opportunity to build a competitive CV compared to their non-autistic peers.

 

18.b) What is going well?

  1.    Last year, Sir Robert Buckland’s Autism Employment Review[lxviii] set out a series of recommendations to improve the employment rate of autistic people, several of which focused on young people moving from education to work. These will be explored in detail in question 18c.

 

  1.    Autistica have committed to working with partners to design and test and employment readiness programme for young autistic people; more details on this will be available in the coming months.

 

18.c) How can the move from education to work for autistic children and young people be improved?

  1.    The Buckland Review sets out a range of recommendations for Government in improving the transition to work for autistic young people, such as:

 

  1.    We urge the Government to act on these recommendations. Recruitment for a Task Group to take the Review’s recommendations forward was paused due to the General Election, and this work does not appear to have resumed.

 

  1.    Additionally, several focus group participants called for a more gradual transition between education and work. Specific suggestions included taster sessions, opportunities to learn skills such as budgeting and navigating office politics, interview training and work experience. One participant, who grew up abroad and undertook national service as an army clerk, praised this experience for given them a structured environment to learn work-related skills. Another praised their experience working to save for university as an opportunity to “get used to different types of people in a work context” and focus solely on this while still living with parents who could manage other aspects of life.

 

19.a) What are the main problems for autistic people in both finding and staying in work?

 

“My friend got a first class honours in computer science and has been unemployed for two years because he can't get past the interview." – Focus group participant

 

  1.    Recruitment practices frequently put autistic people at a significant disadvantage. Job profiles are often generic, including “required” skills that are not necessary for the role; autistic people, who tend to interpret language literally, may be deterred from applying for roles which ask for “good communication” or “a team player”. The traditional interview and many psychometric tests are essentially an assessment of neuro-normative social skills rather than the skills needed for the role, with many of the most well-known standard questions worded in an indirect way which autistic people are likely to misinterpret. Even where adjustments are offered at the recruitment stage, autistic people are unlikely to take these up due to fear of being rejected; a large-scale survey on neurodiversity and employment funded by Autistica found that the most common time for autistic people to disclose their status is after starting a job.[lxix]

 

  1.    The barriers to employment do not end after recruitment. From open-plan offices to noisy factories, the sensory environment of many workplaces is inaccessible to autistic people. As set out in paragraph 52, many services and venues more broadly are inaccessible to autistic people; this not only hinders community inclusion, but also prevents autistic people from taking up jobs at these services and venues. Several focus group participants reported having to leave jobs, or feeling unable to take up jobs, due to the sensory environment.

 

  1.    Workplaces are also often complex social environments, with heavy use of jargon and indirect speech. Autistic people are also likely to face negative attitudes from colleagues, in some cases escalating to workplace bullying. One participant expressed frustration at workplace relationships and important decisions relying on out-of-hours socialising in inaccessible environments:

 

“Sometimes the important conversations happen in the pub. That’s not where I want to be. It’s noisy, it’s chaotic, people move to the bar, they buy drinks… So you get left out of those social interactions, which are important for the stuff you do between nine and five.”

 

  1.    Many autistic adults are unaware that they are autistic, and so cannot disclose this information or formally request reasonable adjustments. Of those who do identify as autistic, an estimated 1 in 10 do not disclose this to anyone at work, often for fear of negative repercussions.lxix Even where reasonable adjustments are requested, many autistic people report a constant battle to keep these adjustments in place, with one Autistica-funded study finding that over a quarter of autistic employees who had requested adjustments were denied.[lxx]

 

  1.    Formal support to help unemployed autistic people find work is patchy, and frequently tied to benefits in a way that creates distrust. Focus group participants expressed frustration at the lack of distinction between autistic people who are able to work but are being shut out by discrimination; those who are temporarily unable to work and would benefit from tailored support; and those who are unlikely to ever be able to work.

 

19.b) What is going well?

  1.    Employers are beginning to recognise the untapped value of the autistic workforce and make changes accordingly, from neurodiversity policies and employee resource groups through to sensory maps and wider flexibility.

 

  1.    Autistica’s Neurodiversity Employers Index (NDEI®) launched last year as the first gold-standard evidence-based workplace neuroinclusion index. Of the organisations who took part in the first year, 86% of responding neurodivergent employees indicated they felt included by colleagues, with employees more broadly expressing strong interest in neurodiversity-specific training across all organisations.[lxxi]

 

  1.    The rise in remote and flexible working, accelerated by the pandemic, has greatly benefitted the employment prospects of some autistic people who could not cope with a more traditional office environment. However, for some autistic people, particularly those with a learning disability, these technologies and ways of working remain inaccessible.

 

  1.    Last year, the Buckland Review set out a series of recommendations for Government to improve the employment rate of autistic people; these will be explored in detail in question 19c below.

 

19.c) How can support for autistic people to find and stay in work be improved?

 

"We're not robots. We all have different needs, different requirements and different preferences for how we work. And I think the more flexible an employer is, the more likely they are to keep their employees that have that sense of loyalty and hard work as well." – Focus group participant

 

  1.    Relatively small changes to recruitment and employment practices can make a substantial difference. Tailoring job descriptions, offering interview questions in advance or finding fairer ways to assess candidates, offering a quiet space and supporting autistic employees to work in a space more suited to their needs can all open up career opportunities for autistic people.

 

  1.    As with other services, job coaches are not always equipped to offer appropriate support and advice for autistic people. The next Autism Strategy should include measures to develop an evidence-based curriculum for specialist neurodiversity work coaches, with a view to rolling this out across the country.

 

  1.    The Buckland Review sets out a range of recommendations for Government in helping autistic people find and stay in work, such as:

 

As set out in paragraph 132, we urge the Government to take action on these recommendations.

 

 

20.a) What are the main problems with support for autistic people who are in contact with the criminal and youth justice systems?

  1.    Participants with experience of reporting crime described being told they were mis-interpreting events because they are autistic. Subsequent investigations are often erratic, with little advance information and timings and locations changing suddenly. These barriers may deter other autistic victims of crime from reporting.

 

  1.    Focus group participants described a lack of practical understanding of autism in the police force. For example, autistic meltdowns are frequently misunderstood as aggression, non-compliance or substance use, which can lead to violent responses and inappropriate sectioning under the Mental Health Act. This is exacerbated by anxiety around encounters with police and sudden, sharp demands for eye contact or verbal communication. Participants raised concerns over racial inequalities in how autistic people in distress are treated by police. Participants also noted that autistic young people in particular may struggle to understand increasingly complex social situations without support, leading to actions that are inadvertently illegal or being taken advantage of in ways that amount to a crime.

 

  1.    Participants reported that autistic individuals in custody may not be made aware of their rights in a way they understand, undermining due process. Standard interview techniques were described as unclear and indirect, such that they may be misinterpreted by autistic people with a literal understanding of language. This can lead to the person being viewed as inconsistent or unreliable, undermining their credibility as a suspect, witness, or victim.

 

  1.    Participants with experience of attending court described this as traumatic, with little to no support available for such an unpredictable, high-stress environment. Those involved in court cases do not receive timely information about court dates, what to expect or how long proceedings will take, and these facts often change suddenly; this is particularly challenging for autistic people. Participants described having their intelligence or credibility questioned because they are autistic.

 

 

 

20.b) What is going well?

  1.    One participant described strong involvement of experts by experience in their local police force, and has been involved in this work to shape strategies and guidance. However, this takes place on a localised, voluntary basis, creating regional inequalities.

 

  1.    Theoretically, autistic victims and witnesses are entitled to the use of a Registered Intermediary to support communication. Focus group participants praised this mechanism, but noted that access in practice is patchy and relies on individual police officers recognising vulnerability. One participant raised concerns that this support is not available to autistic suspects, even though they have not yet been convicted of any crime.

 

 

 

20.c) How can support for autistic people who are in contact with the criminal and youth justice systems be improved?

  1.    Focus group participants suggested a range of initiatives to improve understanding of autism across the police force, including training, advisory groups with experts by experience, and a more experienced champion in every police force to support with communication. Participants also suggested basic adaptations to communication to ensure autistic people understand interview questions and their rights, such as using direct, literal language.

 

  1.    In a court context, participants suggested providing clear advance information for autistic people about what to expect and the support available, including access to a Registered Intermediary. Participants also suggested informing legal professionals and jurors, where appropriate, of how autism may affect communication and presentation.

 

  1.    Participants highlighted links between the broader lack of support for autistic people, as well as inequalities in access to diagnosis, as a factor driving young people in particular towards the criminal justice system. Participants suggested stronger support to help autistic young people understand social rules and boundaries, especially during the transition to adulthood, and a mental-health-focused approach towards substance use in autistic people.

 

 

21.) a) What could the UK Government learn from the devolved governments in Scotland, Wales and Northern Ireland on effective ways to support autistic people?

  1.    In recent years, the devolved governments have seen several efforts to plan services based on the broader population of neurodivergent people rather than considering conditions such as autism separately. For example, in 2022, the Welsh Government established an all-Wales neurodevelopmental pathway for children and young people. An attempt to introduce something similar to the Autism Act in Scotland became the Learning Disabilities, Autism and Neurodivergence Bill; however, this now appears to have been dropped.

 

  1.    The Autism Act (Northern Ireland) 2011, coupled with the Autism (Amendment) Act (Northern Ireland) 2022, is much more prescriptive about the content, implementation and monitoring of the subsequent Autism Strategy than its English counterpart. In particular, the Act requires the Strategy to specify how the Department of Health will make provision for support, and requests prevalence data from every Health and Social Care Trust. This may explain the higher diagnosis rates reported in Northern Ireland, with almost 6% of school-age children reported to have an autism diagnosis.[lxxii]

 

  1.    It should be noted that the long waiting lists for autism assessment seen in England are also reported across the UK. In Scotland and Wales, these figures are not routinely published, but a similar exponential rise is being seen with some areas pausing referrals entirely as they are unable to meet demand.[lxxiii],[lxxiv] Meanwhile, quarterly autism statistics in Northern Ireland present a similar picture of services being unable to keep up with new referrals.[lxxv]

 

21.b) How should the UK Government work with the devolved governments in supporting autistic people?

  1.    The support you receive as an autistic person should not depend on where you live. The UK Government has a role to play in standardising identification and support as it works to identify more effective models, and in identifying and sharing best practice across the UK.

 

22) What could the UK Government learn from other countries around the world on effective ways to support autistic people?

  1.    As public awareness of autism improves internationally, many countries around the world are facing similar challenges in terms of addressing the gaps in identification and support for autistic people. We are increasingly seeing low-cost solutions to upscale autism assessment in countries with considerably fewer resources than England, such as training a wider range of professionals to contribute to assessments.

 

  1.    Researchers in Sweden have developed a strengths and needs assessment tool based on the World Health Organization’s ICF framework indicators for autism and ADHD. Autistica are working to adapt this tool for an NHS context.xxiii

 

 

 

29 May 2025

 

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[lxxi] Autistica (2024). NDEI® Market Report 2024. autistica.org.uk/news/ndei-market-report-2024

[lxxii] Department of Health (2025). The Prevalence of Autism (including Aspergers Syndrome) in School Age Children in Northern Ireland. Annual report 2025). health-ni.gov.uk/news/publication-prevalence-autism-including-aspergers-syndrome-school-age-children-northern-ireland-annual-report-2025

[lxxiii] BBC News. (2025) Thousands on ‘hidden’ ADHD and autism waiting lists. bbc.co.uk/news/articles/cly55rnw5vpo

[lxxiv] Senedd Research (2024). The growing demand for ADHD and autism assessments in Wales. research.senedd.wales/research-articles/the-growing-demand-for-adhd-and-autism-assessments-in-wales/

[lxxv] Department of Health (2025). Quarterly autism statistics for NI (January – March 2025). health-ni.gov.uk/publications/quarterly-autism-statistics-ni-january-march-2025