The Autism Act, 10 Years On: A report from the All Party Parliamentary Group on Autism on understanding, services and support for autistic people and their families in England Foreword Rt Hon Dame Cheryl Gillan DBE MP Contents

Ten years ago, I was incredibly proud Page to campaign alongside autistic people, their families, and autism charities for the 1 Introduction introduction of an Autism Act to make new legal duties to provide adult autism services. 5 Our survey findings We were successful, and the Autism Act was introduced in 2009. It remains the only Act dedicated to improving support and services 7 Our key recommendations for a specific group of disabled people. 8 A decade later, there has been significant Public understanding progress. Awareness of autism has increased hugely. Every council now has an adult autism 14 Support in adulthood diagnosis pathway, whereas fewer than half did before the Autism Act. Today, all but a very 21 Physical health inequality few councils now have a lead commissioner for autism. Autism is also a cross-party priority and, significantly, was mentioned in the vast 27 Mental health majority of parties’ manifestos in the 2017 general election. 33 Education and preparation for adulthood However, every day, I and my MP colleagues are contacted by autistic constituents or their family members who struggle to get a diagnosis, or have to wait several years for one. Too often, they cannot get support from social care or in school. It is clear that 39 Employment there is still much to be done. 46 Access to justice This inquiry set out to find out what actions the Government, health and care organisations, businesses and society as a whole must take to improve autistic people’s lives. Specifically, it looked at what needs to be included in the Government’s revised 51 Summary of recommendations autism strategy. I am delighted that for the first time the Government strategy will include children as well as adults. 57 About this report I am honoured to chair the All Party Parliamentary Group on Autism (APPGA). It is a truly cross-party group, among the most active in Parliament, and I am proud to have worked 57 Acknowledgements with colleagues from across the House of Commons and the House of Lords on this inquiry. Working together, I am confident we can build on our achievements to ensure the Autism Act can live up to its promise.

Rt Hon Dame Cheryl Gillan DBE MP

1 2 What is the APPGA? Many thousands of autistic The APPGA is a formal cross-party backbench group of Members of the House of people who need support in the Commons (MPs) and Members of the House of Lords who campaign in Parliament for greater awareness of autism, and improved services for autistic people and classroom, at home, at work and their families. We have also offered autism training for MPs and their staff to in every aspect of everyday life, improve understanding of autism in Parliament. simply are not getting it. Introduction

The Autism Act was a landmark moment in the It is informed by the views of over 11,000 autistic These unmet needs stem from poor autism campaign to improve the lives of autistic adults people and their families, alongside many understanding by professionals and low and their families in England. It requires the professional experts. It is the most in-depth awareness of the duties that are included Government to have an adult autism strategy, analysis of the autism strategy that has been in the Autism Act. But, given the evidence setting out how autistic adults should be undertaken. we have seen and heard, it is also better supported. And it says that this must be undeniable that allocation of funding underpinned by guidance, placing duties on Our research uncovered that the Act has led has affected the ability to provide councils and the NHS to take action. to welcome improvements in some areas of autistic people and their families with support. Over the last decade, there has been the services they need. Ten years after the Act’s introduction, the APPGA an increasing recognition of autism among wanted to gage the impact this legislation has commissioners and the public. However, the Combined, these factors are having made, as well as finding out more about the overwhelming picture that emerged is one of a profoundly negative impact on state of support and services for autistic people deeply concerning unmet need. Many thousands the lives of the 600,000 autistic in England. This report is the result of a wide- of autistic people who need support in the people in England and their ranging inquiry across all the areas the autism classroom, at home, at work and in every aspect families. Too many are facing strategy covers and the issues autistic people of everyday life, simply are not getting it. unacceptable health inequalities, and their families told us matter most to them. and are at risk of falling into mental health crisis or social isolation and of dying early. It is informed by the This must change. This year is views of over 11,000 our best opportunity to make that happen, as the Government autistic people will refresh its autism strategy and extend it to children and young and their families, people for the first time. To make a difference, this strategy must set alongside many out concrete actions so that autistic people and their families can live fulfilling professional experts and rewarding lives. This report sets out what the APPGA has heard and what the Government must include in the next autism strategy. It is now for the Government to lead the way.

3 4 Our survey findings

The impact of the Autism Act: Access to wider support:

Just 38% of autistic Just 24% of autistic adults and 25% of Just 8% of autistic adults adults and 26% of family families told us they and of families told us 5% members told our inquiry 36% 30% 26% were aware of the that since the Autism Act that they thought public Autism Act. came into force health and understanding of autism care services in their area had improved since the have improved. Autism Act was passed. Just over a third (36%) of Less than a third Only a quarter people who have gone through (30%) had enough (26%) said they were 38% the transition to adults’ services time to prepare for the properly supported. 25% 8% 5% 24% 26% say they were fully involved. transition to adulthood.

Benefits assessments: Unmet mental health and social care needs:

told us they are not getting the 60% told us the forms to apply for benefits support they need, which could total were difficult to complete. 71% as many as 327,000 71% autistic adults across England. 60 Just 19% told us the location 58 of the assessment was suitable.

50 % autistic adults told us they need services.

40 % autistic adults told us they have access to services. 38 Just  14% told us they were satisfied with 30 the length of time it took for their claim to be processed. 29 29 26 20 21 20 21 16 Professional understanding: 10 12 6 9 4 40 5 Autistic adults' opinion of % of professionals who have a good understanding of autism 0 35 38 Families' opinion of % of professionals who 30 have a good understanding of autism Counselling 32 Short breaks daily living Buddying or Support with Social groups befriending Support to live Social worker Care coordinator/ 25 more independently 20 23 22 23 19 18 15 16 76% 82% 14% 10 12 13 10 11 6 4 5 5 2 0

76% of autistic adults told 82% of autistic adults Only 14% of autistic people GPs Police us they reached out for said the process of getting said there were enough Nurses staff

Mental health Jobcentre Plus mental health support in support from mental health mental health services in their Social workers professionals Support workers Hospital doctors 5 the last five years. services took too long. area to meet their needs. 6 Our key recommendations Chapter one – Public understanding

• Create and fund a long-term, properly • Set out clear requirements to NHS England funded national autism understanding and local health commissioners on the campaign, aiming to shift the attitudes need to commission community mental Introduction and behaviour of millions of people. health services that meet the needs of autistic people, and ensure that this is Rt Hon Dame Cheryl Gillan DBE MP • Undertake a cross-Government review on implemented. where autism is recorded in Government Awareness of autism has come a long way over data collections to identify where • Set out and deliver an ambitious plan recent decades. The last autism strategy, Think improved information could lead to to move autistic people out of hospital Autism, made raising awareness and acceptance better support. into the community – succeeding its top objective. More recently, an increasing where Transforming Care has failed. number of popular portrayals of autistic people • Commit to establishing well-resourced The Government should establish an across the autism spectrum have raised many of specialist autism teams in every local inter-ministerial group to ensure cross- the issues that autistic people face into the public’s authority in England. Government accountability on the delivery consciousness. Our inquiry wanted to hear about of this programme. whether enough has been done and whether • Establish an autism social care awareness alone would improve the lives of commissioning fund for councils to use • Commission a review tracking the journey autistic people. to set up and run new autism services of autistic people in mental health Polling from the National Autistic Society in 2015 and support. hospitals and prisons to develop a better suggests that 99.5% of people have heard of understanding of why they end up in these 1 • Include a requirement in contracts autism. But the charity’s research also found that environments. It must set out how national just 16% autistic people and their families feel the for benefits assessment providers to and local Government can address the provide all frontline assessors with public understand what it means to be autistic. issues that come out of this review. Around a half said that they sometimes do not go autism training, and regularly monitor out, and 28% said that they have been asked to compliance. • Commit to underpinning commitments in leave a public space because of their autism.2 the autism strategy for children and young • Establish and report on a new waiting people with statutory guidance. This tells us that poor public understanding of autism has profound consequences for autistic people time standard from referral to diagnosis, and their families. We were particularly concerned to hear National Autistic Society research showed involving autistic people and their • Require autism training to be included in that 79% of autistic people and 70% of families felt socially isolated because of this lack of public families to identify an appropriate professional development for all teachers, understanding of autism.3 Just 24% of autistic adults and 26% of family members told our inquiry benchmark wait. including head teachers. they thought public understanding of autism had improved since the Autism Act was passed.

• Clarify legal duties on local health and • Develop clear guidance for schools and In our inquiry evidence session, we heard more from autistic people and families and a number of social care bodies, and as part of their commissioners on what good education organisations that have been involved in awareness raising. We wanted to know what had been plans to develop a mandatory autism provision for children and young people tried, what had worked and what still needs to be done to improve understanding. We also wanted to find out from autistic people and their families what ‘understanding autism’ means to them. training programme, establish a on the autism spectrum looks like. mechanism for monitoring implementation and holding providers to account. This • Make autism training compulsory for all should also make sure that training is Jobcentre Plus staff, making sure staff at an appropriate level for each staff have the level of training that reflects their member, based on the Autism Capabilities interaction with autistic people. Framework and statutory guidance. • Commit to making autism training • Commission an independent review mandatory for all police officers, of the definition of autism as a ‘mental by working with the College of Policing disorder’ under the Mental Health Act, to require all new police recruits to consulting with autistic people and their undergo autism-specific training, as well families, charities and mental health as creating a programme for all existing professionals. officers to receive this training. 1National Autistic Society (2015), Too Much Information. London, UK. 2Ibid. 3Ibid. 7 8 What does ‘understanding’ autism mean?

1. Awareness is not understanding and understanding is what matters

Awareness and understanding are not the same thing and to make a difference to autistic people’s lives, it is better public understanding Awareness and of autism that we need to see. understanding are not The people who gave evidence felt that, as well as knowing that autism exists, the public needs the same thing and to know more about what it means to be autistic and some of the ways that they might be able to make a difference to support autistic people – particularly at times of difficulty. The National Autistic Society’s Too to autistic people’s Much Information campaign highlighted the five things autistic people have told the public they lives, it is better public would like them to know about what it is like to be autistic: understanding of autism

• needing extra time to process information that we need to see

• experiencing anxiety in social situations

• experiencing anxiety with unexpected Understanding helps counter misconceptions changes and myths about autism, which sadly are still common. Stereotypes can be hard to • finding noise, smells and bright lights 2. Autism is a spectrum change, but the way to do this is to tackle the painful and distressing misinformation from which they stem. Part of Our witnesses told us they wanted the public to assumptions in each of these situations; either this can be achieved through exposure, including • becoming overwhelmed and experiencing understand that autism is a spectrum condition. that someone does not need any support, that in the media. Recently, two national soap operas a ‘meltdown’ or ‘shutdown’. This means that, although autistic people will someone can be ‘written off’ and not listened have introduced autistic characters, and autistic share many of the same characteristics, each to, or failing to realise that not being able to people are also presenting shows such as Max, an autistic man who was one of our and every autistic person is different. Some will verbalise can be a sign of anxiety and someone The Autistic Gardener. Primetime dramas, witnesses, highlighted that as an autistic go through life with very little support, while needing support. Each of these assumptions can including The A Word, have provided a person, he constantly has to adapt to the world others will need a lifetime of care and support. be very damaging in their own way. greater insight into people’s strengths, as around him instead of the world adapting to Witnesses wanted to ensure the full range well as the challenges autistic people and him. With more understanding, members of the of experiences and needs is understood and It is also important that the public understands their families face across their lives. This public would know better what they can do. represented in the media and public life. that being autistic does not mean you might improving representation is encouraging, but This could be knowing not to ask lots of not have other conditions that mean you need the Government has a role to play in making questions at once, to remove things that cause Lack of understanding often leads to care and support – like a learning disability or sure this greater understanding of autism is sensory overload, or what to do if an autistic misconceptions. Some autistic people can a mental health condition. But these need to be transmitted from our screens to everyday life. person is experiencing a meltdown. One parent communicate with speech, while others cannot recognised as distinct from autism. explained that, while care and support is vital, – and some can only speak some of the time. society gaining a better understanding of Our witnesses told us that people make wrong autism is what can help many people on a day-to-day basis.

9 10 3. Identity 4. Autistic people are Ways to improve autism Being autistic does not strip you of your all ages individuality. Autistic people may be of any Ten years ago, when the Autism Act was going gender, faith, ethnicity or sexuality. However, understanding through Parliament, the goal was to tackle the witnesses told us that too often, in terms of assumption in statutory services that autism public understanding as well as services, only affects children. The last decade has seen Friendly Award. They are providing staff people’s different identities are not well 1. Role of business a lot of progress, but our witnesses (a mix of training, information for autistic visitors and understood or taken into account. One witness autistic adults, parents and family members) routes through the airport that can avoid described a system where people are ‘put in a We heard from the National Autistic Society, believed that public understanding still overwhelming situations like duty free and box’ and if you do not fit into that ‘box’ you can which has launched an Autism Friendly Award largely focused on children, or younger adults. security. Likewise, Workman Retail and Leisure end up feeling very isolated. and the more recent Autism Hour initiative. Both Initiatives like autism-friendly screenings, for have also gained this Award in 11 of their are aimed at encouraging shops and public example, are often based on children’s films. shopping centres that have made changes One witness, Venessa Bobb, also highlighted spaces to become more accessible to autistic to their environments. Closer to home, the UK that awareness and understanding of autism people. We also heard from Autism Together Autistic people are also getting older. Those Parliament has also achieved the Award for in some communities (eg BAME communities) who have worked across Liverpool to open up who received their diagnosis in childhood its work to improve access for autistic visitors. falls behind that of wider society. This means many spaces in the city to autistic people. in the 1960s and 70s are approaching older that autistic people can be doubly isolated – However, there is a lot of work to be done to age. Meanwhile, more adults are now being from mainstream support that does not reach Last year’s Autism Hour saw 30,000 designated make sure that the whole Parliamentary Estate diagnosed. Over time, we will see more older into their community, as well as from their quiet hours across 11,000 businesses.4 This is autism-friendly - not only to visitors but staff autistic people. While public depictions of community itself. is very welcome and we hope participation and Members of Parliament too. It is really autistic people are increasingly showing autistic continues to increase. But we want this to be encouraging to see so many businesses taking adults, there is an under-representation of older Witnesses talked about how important it is reflected in long-term change – not just an hour, steps that often do not require huge changes autistic adults. to improve understanding of how different but all year round. or significant investment - but can make a big identities intersect, for example, what it means difference to autistic people and their families’ to be an autistic woman, autistic and black, Several large businesses have led the way in experiences. or Muslim, gay, or non-binary. This needs becoming more accessible to autistic people.

to be part of the public’s understanding, We heard from Gatwick Airport, which has 4National Autistic Society, Autism Hour Highlights. Available at: https://www.autism.org.uk/get-involved/media-centre/news2018- and must also be acknowledged by care received the National Autistic Society’s Autism 10-16-autism-hour-highlights.aspx (Accessed: 16 July 2019) and support services.

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11 12 2. Role of Government What needs to be done Chapter two – Support in adulthood There have been national autism awareness In its new autism strategy, the Government campaigns; both the National Autistic Society should: and the Autism Alliance have developed models, while countless local organisations work in their • create and fund a long-term, properly funded own communities every day. Some of these national autism understanding campaign, Introduction - Catherine West MP have had significant results. We heard that the aiming to shift the attitudes and behaviour National Autistic Society’s Too Much Information of millions of people Autistic adults may need a wide range of support to campaign had a reach totalling 70 million • outline a plan for ensuring that all public live as independently and happily as possible, either views, and resulted in a 17% change in public buildings are autism-friendly, or are taking from social care services, from benefits or from housing. understanding.5 But even with achievements steps towards becoming autism-friendly, Before the Autism Act, national autism strategy and like this, individual organisations’ reach can and meet duties under the Equality Act for statutory guidance were introduced, research from the only go so far. autistic people by 2024 National Autistic Society’s I Exist campaign in 2008 found autistic adults were being ignored and isolated. We heard strong views from our witnesses • develop guidance for councils on how to While the introduction of the Act, and the Care Act in that the Government has an important role to use their roles in economic development to 2014, should have improved autistic adults’ entitlement play in improving autism understanding. The promote autism-friendly initiatives (and their to support, we know that ten years later many still do success of the Dementia Friends programme, benefits) to businesses not get the support they need to live the lives they want. which the Government funded, led to significant improvements in public understanding of • commission research into the additional Our research has found that ten years after the dementia. Autism needs similar levels of barriers faced by autistic people from diverse introduction of the Autism Act, thousands of autistic improvement and we feel there is a lot to be backgrounds and with a range of needs, and adults are living without the range of support they may need from social care, benefits or housing learned from its approach. Our witnesses were set out an action plan for how to tackle the because care staff do not understand their needs and the right specialist and lower level services keen to highlight that to be as impactful as specific barriers they face. are not available. Many do not get any help until they reach crisis point. possible, an understanding campaign should be empowering to autistic people, and should In addition, as parliamentarians, we believe focus on improving understanding of the there is more that Parliament itself can do to breadth of the spectrum and the full range be more accessible and welcoming to autistic What our research tells us of people’s needs. people. As part of the renovation of the Parliamentary Estate, Parliament should commit For many autistic people, social care is the There was agreement that Government to becoming fully autism-friendly. Parliament difference between being able to leave the Just has a reach and resources that individual house or not, being able to wash, dress and 10% should consult with autistic people and their organisations do not have, meaning that a of autistic adults said families about designs for renovations of eat or not, or work or volunteer or not. Social programme could be larger and longer-term. the Parliamentary Estate to guarantee the workers make decisions every year about the social workers Our witnesses were also keen to highlight that environment is more inclusive to autistic visitors, whether thousands of autistic people are able any autism understanding campaign must staff members and MPs. to get this support, under the Care Act. Our they have come into include and involve autistic people and their inquiry has found that support for autistic adults contact with had a families, and be rooted in their experiences. has actually got worse, particularly for those Public understanding campaigns are no who need social care, over the last 10 years. We good understanding substitute for professional understanding and have found alarming levels of unmet need, with of autism or autistic we heard evidence from witnesses, making clear 71% of autistic adults telling us they are living that professionals working with autistic people without the support they need. In particular, people’s needs, need specific and more in-depth training. those who need ‘preventative’ support are not getting it because the services all too often are not available. while just 19% It has also uncovered that part of the reason thought this for autistic people cannot access the care or benefits they need to live well is down to support workers. difficulties with assessments. We heard in the inquiry session about the impact of lacking understanding amongst assessors To ensure autistic adults are able to live well, on assessments, as well as the processes the Government must address this unmet not being autism-friendly. need with more and better services as well as improved professional understanding. 5Don’t Panic, Too Much Information. London, UK. Available at: https://www.dontpaniclondon.com/project/too-much-information/ (Accessed: 15 July 2019)

13 14 1. Deeply concerning levels The impact on support for autistic adults has been profound. In our survey we asked autistic “I rely on my parents who are 71 and 82 years old. I go out once a of unmet need in adult adults about the support they need – and what they get. The number of autistic people who are week with Shared Lives. I could not cope on my own so have been social care not getting the support they need has actually increased over the lifetime of the Act. Today, as back with my parents for two months. It is not easy as my father Over the last 10 years, funding for public sector many as 327,000 autistic adults could be living services has been stretched by the need to make is ill. I have had help with cookery lessons in the past - but nothing with unmet needs across England.8 savings in the context of increasing demand for consistent. Nothing is consistent - things keep changing. What is support. Our research, including interviews with 46% of autistic adults told us that with more to happen to me when my parents are dead? Who will help me?” – council staff, suggests that these reductions support they would be more independent. have meant a decrease in the range of services We heard throughout the inquiry about the Anonymous councils can provide, from preventative or lower devastating impact of this widespread unmet 6 level services, to specialist support. The Local need. People who lack the care they need often Government Association estimates that without have no choice but to rely on family members additional funding for social care, there will be or the health service, and can end up in crisis. a £3.5 billion gap by 2024/2025.7 46% The Local Government of autistic adults told us Association estimates that that with more support they without additional funding would be more independent.

for social care, there will be a A recent report by Carers UK showed the extent £3.5 billion gap by 2024/2025. to which family carers are plugging the gap in support and the impact on their wellbeing, with 81% of all carers reporting feeling lonely 9 or isolated as a result of their caring role. In our survey, 38% of autistic We also heard that without the care they need, too many autistic people end up in mental adults told us they need An unacceptably low number of autistic adults health hospitals, because there is nowhere 2. Insufficient services access to social groups but and families who need support are getting it: else to get support. for autistic people only 16% have access to this support, while 29% said they 40 Autistic people may need a wide range of need buddying or befriending support, from a little help to organise and 35 % autistic adults told us they would like. but just 4% access this. keep on top of things, to intensive packages of personal care. But our inquiry has found that for 30 In our interviews with council commissioners % autistic adults told us they have access to. people across the autism spectrum of all ages, and during our inquiry session, we heard that in 25 29 those services are not there. We found that in many cases preventative services have closed 26 two areas in particular there was a worrying because councils had to prioritise available 20 lack of services. 21 20 funding for people with more complex needs. 15 Councils must be encouraged and supported Access to preventative and to increase investment into these services, 10 lower-level support which are cheaper in the long-term, because 12 11 they stop people’s needs from escalating. 5 9 84 8 4 6 2 Some low-level support can stop people We also need a greater understanding of 5 which models of low-level support are most 0 needing more help later on. This is often called ‘preventative’ support, because it prevents effective for autistic people. people needing more intensive support. It can include things such as social groups and Short breaks daily living Support with Supportday fromservices Support to live Social worker Supported living befriending services. Our witnesses told us that One commissioner told us: Care coordinator/ housing options Support from other more independently this support plays a crucial role in reducing “Some really good services loneliness and social isolation. Councils should 6National Audit Office (2018). Financial sustainability of local authorities 2018. London. be providing a range of preventative services, have been lost”. 7 Local Government Association (2018). The lives we want to lead: the LGA green paper for adult social care and wellbeing. London, UK. including for autistic adults, but we heard that 8Calculated using the prevalence of over 18s in England, The NHS Information Centre, Community and Mental Health Team, Brugha, et al (2012). Estimating the prevalence of autism spectrum conditions in adults: extending the 2007 Adults Psychiatric Morbidity Survey. too often this is not happening. Leeds: NHS Information Centre for Health and Social Care. 15 9Carers UK (2019). State of Caring: A snapshot of unpaid care in the UK. London, UK. 16 Access to specialist support Other findings from the SHAPE project Adult Autism Service (Tower Hamlets) Autistic adults responding to our survey also told us there is still a considerable lack of Autistic adults, families and witnesses at the Senior SAT professionals were all highly This service was developed directly in understanding in social care more broadly. inquiry session told us they need support from committed to this model of provision response to NICE guidance and the Autism Just 10% of autistic adults said the social workers services that really understand autism and are for autistic adults without LD, but did Act’s statutory guidance. It is jointly they have come into contact with had a good tailored to autistic people’s needs, but that commissioned by the CCG and council. It understanding of autism or autistic people’s these services are not widely available – in part also report there needs to be adequate needs and 19% thought this for support workers. investment and resource as referrals offers autism assessments, diagnosis and due to pressures on councils. Witnesses said support. The team develop a support plan Specialist autism teams have a key role to play there is an increasing ‘one size fits all’ form were higher than expected. These here. We heard from witnesses that specialist to help the autistic person with any of support that doesn’t always take autistic teams need to be resourced to train other professionals reported benefits of difficulties they may have after diagnosis. people’s needs into account. Often, autistic services, such as generic social care teams. partnering with local autism groups, people can only access generic or learning for instance in planning and evaluating disability care that doesn’t meet their needs. The service provides up to 12 sessions to Professionals told us that training is often their provision, designing information address these difficulties, and runs an relegated on the list of priorities, particularly Professor Bryony Beresford from the University resources and jointly running groups informal support group for its users, because of a lack of monitoring and enforcement. of York told us about her research into Specialist for people who were newly diagnosed. autism-awareness events across the area The high turnover of social care staff and Autism Teams (SATs), which is known as the They reported that some autistic and autism-specialist consultancy to prevalence of agency workers also makes SHAPE project. These teams were recommended people valued joining such groups mainstream services. The multi- implementation of autism training difficult. by the National Institute for Health and or communities, whether local or online. disciplinary team includes a consultant One commissioner said that “professionals have Care Excellence (NICE) and in the Autism Act to prioritise the direct business of the day, so However, and very importantly, psychiatrist, clinical psychologist, statutory guidance. NICE defined SATs as occupational therapist, speech and training is never at the top of their priority list.” the study also found that only a specialist community-based, multi-disciplinary language therapist and a social worker. It is vital that whenever an autistic adult comes services providing or coordinating diagnosis minority of people were in contact For those with needs around accessing or into contact with a care professional, they and assessments, holistic care and support with such groups. staying in employment, the team works in (addressing health, social care, housing, understand how to meet their individual needs. partnership with a local specialist welfare or employment needs), support to They may be making very important decisions Professionals believed several elements supported employment service for young family members and carers, and supporting were key to ensuring sustainable about people’s care, or mental capacity. In the people and adults. long term, support from care professionals who mainstream services caring for autistic adults. improvements in support for autistic This research found that few local areas in understand autism can make the difference adults without learning difficulties. England currently have these teams. Where between someone living well in their community they do exist, they are specifically for autistic In addition to providing autism- and falling into crisis. adults without learning disabilities (LD), and specialist interventions and support, this is because commissioners and practitioners SATs should have greater resource 3. Professionals who do feel there is no provision for this particular and capacity to upskill and support Just 10% of autistic adults said group. The research followed over 250 autistic not understand autism mainstream services to deliver care the social workers they have individuals who had access to a SAT, and found and support for autistic people. SATs the following: should work in ways that promote self- Why autism training has not come into contact with had • Twelve months after first using a SAT, there management skills and capacity, and been embedded a good understanding of was evidence of a positive impact on people’s should have the resources to provide The Autism Act statutory guidance requires autism or autistic people’s mental health and ability to manage their drop-in services and other forms of councils to train all social care staff in autism daily lives. needs and 19% thought this low intensity, ongoing support. to an appropriate level, meaning staff carrying • It also found evidence that people benefit out assessments need specialist training. But for support workers. most from SATs when these are made up the Government’s latest survey of councils on of staff with diverse skills and professional We heard overwhelming support for these Autism Act implementation shows only 21% backgrounds. teams from all our witnesses and others who of councils say they are fully complying with attended our inquiry. We strongly believe the the commitment to provide autism training • It also found differences between people Government’s next strategy must ensure that to all health and care staff, and this has only 10 who were diagnosed by a SAT, and therefore more autistic adults are able to benefit from marginally improved in two years (from 18%). offered high quality information and them, with a SAT in every area. advice about autism and support to address To make matters worse, over 43% of councils presenting needs, and those who only said they do not have specialist autism training accessed a diagnostic assessment service. for professionals carrying out care assessments, and this unfortunately represents a decrease since 2016.11 If staff carrying out assessments do not understand autism, they are much less likely to properly identify people’s needs.

17 18 10Public Health England (2019), Self-assessment exercise 2018: overview of results, London. 11Ibid. 4. Social care assessments 5.  Autistic adults’ challenges What needs to be done To better implement the Autism Act at a local level, councils must: The evidence session and survey have with benefits assessments Social care • use upcoming commissioning guidance highlighted that in spite of the Autism Act, Accessing benefits can make a substantial and the autism population calculator, being autistic adults still face barriers in getting difference to autistic adults’ lives, whether or not In the new autism strategy, developed by Skills for Care and the National assessments of their care and support needs. someone is in work. However, the inquiry session the Government must: Autistic Society, to plan and commission But for many, this is a vital part of being able to revealed that too many are having negative services live a fulfilling and rewarding life. experiences with benefits assessments. • commit to establishing well-resourced • nominate an elected member to be an autism The latest Government survey of councils specialist autism teams in every local authority A key issue, as with social care, was the lack champion for the area. This champion should showed that 61% of councils do not in England of understanding among assessors. Unlike in regularly report on training and work with the automatically offer care assessments when social care, there are currently no statutory establish an autism social care commissioning council’s autism lead to improve services. someone is diagnosed with autism, and this • requirements for benefits assessors to have fund for councils to use to set up and run The Government should require this in the figure has increased from 50% in 2016.12 Around autism training. In the inquiry session, Dr new autism services and support. new autism strategy a fifth of councils (22%) also said that they do Ian Gargan from Capita acknowledged that not have a pathway for care assessments for assessors struggle with assessing autistic • set out how it plans to improve social care • include a requirement in contracts with social autistic adults without a learning disability.13 adults. services for autistic people across England, care providers to demonstrate that they are This is concerning, as we heard from our making sure that upcoming commissioning implementing mandatory autism training witnesses that this particular group struggle There are also issues with the benefits guidance is used and that services are to get care assessments – and are often refused assessment process itself. Autistic adults properly resourced • prioritise investment into preventative services, them. This is despite it being clear in the Autism have told us they face many different barriers: such as buddying or befriending, to improve Act statutory guidance that people should not • restate to councils their duty to assess early intervention and reduce the number be denied a care assessment based on whether 60% told us the people’s needs regardless of whether they of autistic people ending up in crisis. they have a learning disability. have a co-occurring learning disability, and forms to apply for hold areas that are found not to follow this Witnesses also told us about challenges with Benefits benefits were difficult duty to account the assessment process itself. Many said to complete. In the new autism strategy, assessments are anxiety-inducing and not • make clear how they are going to ensure the Government must: autism-friendly, particularly when carried out by that the mandatory health and care training professionals who do not understand autism. Just 19% told us programme consulted on in early 2019 is Melissa McAuliffe, a social worker from London, • include a requirement in contracts for benefits the location of going to be taken forward for all social care assessment providers to provide all frontline revealed some of the difficulties she has seen staff, including how it will be resourced and autistic adults face, which include: the assessment assessors with autism training, and regularly monitored monitor compliance was suitable. • difficulties with being able to communicate require autism to be recorded in all key social • • the Government should develop guidance – their needs and knowing to ask for the right care data sets including Short and Long-Term type of support Just 14% told us working with autistic people and their families Support and Adult Social Care Finance returns – to be disseminated to all providers carrying they were satisfied out benefits assessments on how to properly • not sharing potentially relevant information • set out plans to increase and improve social with the length of time identify autistic people’s needs and ensure with assessors that may factor into the care and preventative services for older assessments truly capture their circumstances. outcome of the assessment it took for their claim autistic people, including those with nursing to be processed. care needs • the structure and content of the assessment not being autism-friendly. • extend and strengthen councils’ As a result, too many autistic adults miss out responsibilities around providing preventative These barriers can, and do, result in autistic on benefits and the support they offer. services under the Care Act, and provide the adults losing out on vital support. Witnesses support to make this a reality locally at the inquiry session also said how important it is for there to be more flexibility in how • commission research into what care and assessments are carried out (which could support options work well for autistic people be giving people more time, or making sure and act to embed the results across councils that questions are autism-friendly) and that in England. assessors have a proper understanding of autism when making decisions. Underpinning this, the Government needs to set out how it is going to place the social care system on a sustainable footing in the longer term. It must ensure that the needs of autistic people and their families are properly included in plans for a reformed system. 19 12Public Health England (2019), Self-assessment exercise 2018: overview of results, London. 13Ibid. 20 Chapter three – Physical health inequality

Introduction - Rt Hon Sir Norman Lamb MP

After several years of highlighting the issues autistic people face in getting a diagnosis or accessing physical health services, it is now well-documented that autistic people face an utterly unacceptable health inequality. As Autistica’s Happier, healthier, longer lives briefings found, autistic people face many barriers in accessing healthcare and experience poorer physical health and life expectancy.14 The Government recognised this, and included autism in the NHS’s new Long Term Plan as a clinical priority. While this is a big step in the right direction, there is much left to do.

It is clear there have been certain important improvements since the introduction of the Act and the last review of the autism strategy. For instance, every English council now reports having an adult autism diagnosis pathway, up from fewer than half before the Autism Act, which means many more adults are receiving an important diagnosis. However, just 8% of autistic adults and 5% of families 1. Trouble getting an A Freedom of Information request last year told us that since the Autism Act came into force uncovered a similarly concerning waiting times autism diagnosis postcode lottery for children, with many waiting health and care services in their area have improved, more than two years.20 At our inquiry session, while only 14% of autistic adults said the support they received helped Although every area now has an adult diagnosis National Learning Disability Director at NHS them to have good physical health. Many of these issues appear to stem pathway, this is not clear for children. Both England, Ray James, recognised this, saying from continued poor autism understanding among health professionals, autistic adults and children still face long there is a need to “incentivise and bear down despite clear duties to provide training in the Autism Act statutory waiting times – sometimes running into several on variability”. guidance. As a result, autistic people’s needs are missed and years. Alongside this, a lack of information, important reasonable adjustments are not made. advice and signposting onto other support As awareness of autism increases, more people means that this process can be incredibly are identifying that they might be autistic What our research tells us stressful. For autistic people and their families, and seeking a diagnosis. A diagnosis can be Our survey has also shown improving access to diagnosis was a top priority a crucial step in getting the right support, The inquiry highlighted the range of difficulties in our survey. stopping people from struggling and helping autistic people and their families face in that people still lack support people to better understand their own needs. accessing healthcare, including challenges in after diagnosis, with just 4% The NICE Quality Standard on autism states that But services are not keeping up with this demand. getting a diagnosis. Both autistic people and the wait between referral and first diagnosis their families told us that getting a diagnosis of autistic adults and families appointment should be no more than 13 weeks, is vital to them, but that they have to wait far but just 18% of councils reported meeting this The NICE Quality Standard on telling us they were fully target for adults in a recent Government survey.15 too long to be able to get it. Our survey has autism states that the wait also shown that people still lack support after supported in the 12 months Moreover, reported waiting times for adults appear to have almost doubled since 2016, diagnosis, with just 4% of autistic adults and after their diagnosis. between referral and first families telling us they were fully supported in with average waits now standing at 30 weeks, 16 diagnosis appointment should the 12 months after their diagnosis. compared to 16 weeks in 2016. The longest waits in England were reported in Greenwich, of autistic adults saying these professionals be no more than 13 weeks, but There are also clear difficulties for autistic Tameside and Bradford – standing at over two have a good understanding of autism 17 people in accessing the health service when years. The increase in waiting times could in just 18% of councils reported respectively. This, as well as lack of access they need it more generally. In large part, this part be attributed to the increasing number of to reasonable adjustments, means that meeting this target for adults inequality is down to healthcare professionals’ people being diagnosed, with 62% of councils autistic people are often not engaging lack of training in autism. Hospital doctors and reporting a rise, but also budget pressures on in a recent Government survey. with the NHS when they need to. And this 18,19 nurses in particular were found to have low the NHS. is having a knock-on impact on people’s understanding of autism, with just 11% and 13% physical health and life expectancy. 15Public Health England (2019), Self-assessment exercise 2018: overview of results. London, UK. 16Ibid. 17Ibid. 18Ibid. 19National Autistic Society, New report shows adult diagnosis waiting times have almost doubled in the last two years. Available at: www.autism.org.uk/get-involved/media-centre/news/2019-06-20-new-report-adult-diagnosis-waiting-times.aspx (Accessed on: 16 July 2019) 21 20The All Party Parliamentary Group on Autism and Lamb, Norman (2018), The autism diagnosis crisis. London, UK. 22 14 Autistica (2019), Happier, healthier, longer lives: briefings to improve autism policy and research. London, UK. The NHS Long Term Plan recognised long waiting waiting times, and that more data should be People told us they want to see the diagnostic During our inquiry session, witnesses discussed times for diagnoses, and committed to reducing recorded to show the overall wait – from initial pathway include follow-up conversations with why there has been such varied implementation these for children. This is a welcome step, referral to the stage of a diagnosis being given. healthcare professionals to review their needs of autism training across the NHS. Some felt but the Government must also act to reduce after diagnosis, as well as provide information that legal duties are unclear - that statutory waits for adults. and referrals on to other support. While the guidance is expressed as things that ‘should’ 2. The lack of support statutory guidance already states that NHSE (rather than ‘must’) be done, despite case law Following extensive campaigning from the after diagnosis and CCGs should be providing appropriate clarifying that it is a legal obligation - and that APPGA, the National Autistic Society and others, post-diagnostic advice and support, the there was low awareness of the Autism Act new national waiting time data will be published majority of autistic people told us this is not across the NHS, and a lack of monitoring and As well as trouble getting an autism diagnosis, from autumn 2019, reporting on the average happening. This is where specialist autism enforcement. autistic people and their families said they wait between referral and first appointment. teams can play a role. struggle to navigate often complex diagnostic The Government must ensure this data is used to The Government has committed to mandatory pathways, as well as not knowing where to turn make sure local services keep up with demand training, following the tragic case of a young after a diagnosis. Getting a diagnosis is a crucial and meet NICE guidance. But this measure is 3. The lack of professional autistic man, Oliver McGowan, dying in hospital. step, but it should include providing autistic only one part of people’s diagnosis journey. After This is clearly a vital step and the Government people with the information and knowledge what we heard from our witnesses, we believe understanding must also take bold action in the review of the they need to understand what their diagnosis a standard should be put in place for diagnosis strategy to ensure all NHS bodies know their means, as well as leading to the provision of One of the major barriers to autistic people duties. In addition, it should guarantee that support if they need it. The Autism Act statutory having full and equal access to healthcare proper monitoring and enforcement mechanisms guidance makes it clear that they should be (and other support where appropriate) is “I asked my GP for proper are put into place to ensure local areas are held offered services, such as care assessments. the pervasive lack of autism training. Having to account. This is crucial in guaranteeing better diagnosis as she and other a proper understanding of autism, how implementation in the future, so that autistic We heard from our witnesses and survey autism affects a person, and the adaptations professionals have agreed people receive support from professionals respondents that this information and follow- professionals may need to make, is central in who understand their needs. I am extremely likely to be up support is not being provided. This means ensuring people receive the care they need. autistic and I have children that autistic people and their families often rely This is true for specialist autism services and on self-research after receiving a diagnosis to for all other health services, like GP surgeries 4. Improving access to who have all been diagnosed understand what their autism means and the and hospitals. as on spectrum. My GP said no support they could be entitled to. As a result, health services they are at risk of missing out on support. Back in 2013, the National Autistic Society point in getting diagnosis and Autistic people and their families told us they called on the Government to meet outstanding Autistic people do not always come into contact waiting lists were closed.” needed healthcare professionals to give them strategy and statutory guidance commitments with the health service because of their autism, clear information about what support they on training. However, our inquiry findings but because of physical health needs or co- could get following a diagnosis and what show that training is not being provided to all occurring disabilities. However, our inquiry process to follow. healthcare professionals, as it should. We asked has shown that they often struggle to access autistic people and their families to tell us how health services, and that many have negative good they thought the autism understanding of interactions with the NHS because reasonable Autism understanding among healthcare professionals: health professionals was. adjustments are not made to the support they receive. This can result in distress and anxiety, or not seeking health support at all. 25

23 % of autistic adults who say the health 20 22 professional has a good understanding of autism The statutory guidance 2015 • NHS England CCGs must under the National % of families who say the health professional states that Health Service Act 2006 have regard to the 18 has a good understanding of autism need to reduce inequalities between patients 15 16 • local authorities, NHS bodies and Foundation with respect to their abilities to access health Trusts must comply with all the duties which services and reduce the inequalities between 13 apply to them under the Equality Act 2010, patients with respect to outcomes achieved 10 11 including the duty to make reasonable for them by health services being provided. 9 adjustments to their services whether they This should positively affect the way that 8 8 provide these services directly or outsource these bodies exercise their functions in 5 7 7 respect of autistic people. 5 them for disabled people (such as autistic people) 0

GPs

Nurses Health Health Staff Hospital Doctors Visitors Reception

Professionals 23 24 The Autism Act statutory guidance confirms What needs to be done NHS England should: • commit to reducing autism diagnosis waiting the NHS has a duty to provide reasonable times for adults, building on the commitment ensure there is clear leadership for autism adjustments. In spite of this, people told us they In the new autism strategy, • in the Long Term Plan to make this happen for within NHSE, by either expanding the current struggle with the physical environment not being the Government should: children autism-friendly, have problems with booking role of Director of Learning Disability to appointments and a lack of understanding of • commit to establishing well-resourced Director of Learning Disability and Autism or • provide local commissioners with support the communication or sensory difficulties people specialist autism teams in every area in establishing a separate leadership role at to commission accessible autism-friendly might have. In the last autism strategy, the use England, providing diagnosis, support and Director level services. of hospital passports was recommended. These information immediately after diagnosis, and have since been introduced and have been training to staff in other local services • work with the Government to ensure that found to be useful to those who have accessed specialist autism teams are established in Local health services should: them. As technology in the NHS has progressed, • commission a comprehensive review into the every area the NHS Long Term Plan has also committed to suspected gap in life expectancy for autistic • ensure they are following the NICE Quality including autism in new electronic reasonable people, and put forward plans for how it will • establish a formal structure to hold each area Standard on autism and each of the Clinical adjustment ‘flags’ that will go on a database for reduce this gap to account on diagnosis waiting times (eg the Guidelines in full health professionals, so people’s communication CCG Improvement and Assessment Framework) and sensory needs can be recorded. This is a • establish and report on a new waiting time for both children and adults • provide all autistic people with the information standard from referral to diagnosis, involving positive step and we recommend it should be they need to understand what their autism autistic people and their families to identify an • record autism in Local Health and Care rolled out at the earliest opportunity. means at the point of diagnosis, as well as appropriate benchmark wait Records, to ensure autistic people can be the option of a post-diagnostic review, and We have seen sobering research from Autistica identified and appropriately supported locally ensure referrals onto other support happen that suggests autistic people are at risk of dying • clarify legal duties on local health bodies, and • roll out the inclusion of autism in reasonable systematically prematurely, with evidence pointing to the fact as part of their plans to develop a mandatory adjustment ‘flags’ on Summary Care Records that autistic people are more than twice as autism training programme, establish a by the end of 2020. While waiting for this, NHS • be clear of their duty to provide anticipatory likely to die early than the general population.21 mechanism for monitoring implementation and England should share best practice about reasonable adjustments and to act on It is imperative that the Government takes holding providers to account. This should also hospital passports amongst NHS providers that duty. urgent action to address this difference in life make sure that training is at an appropriate and CCGs. This will then help with inputting expectancy, starting by undertaking an autism level for each staff member, based on the the correct information to the flags mortality review and developing a better Autism Capabilities Framework and statutory understanding of the issues behind it and how guidance • ensure that the Long Term Plan’s commitments to tackle it. A similar mortality review exists of on health checks, embedding reasonable • commit (specifically the Healthcare Quality people with learning disabilities. We recommend adjustments (including ‘digital flags’) and that it should look at whether particular groups Improvement Partnership) to commissioning an annual mortality review to better understand better training are taken forward and fully of autistic people are at greater risk of ill health funded than others. and reduce premature mortality and health inequalities among autistic adults It is also important that potential health issues are picked up more systematically. As part of our • commission a wide-ranging review of the inquiry, we referred to Autistica and the National data that needs to be collected across health Autistic Society’s research into annual health and social care to inform and improve health checks for autistic people. This could help make interventions for autistic people, and then sure that health symptoms are identified and commit to making sure this is collected treated earlier, which in turn could help improve commit to establishing and funding an or save the lives of many autistic people, • autism research strategy to underpin future particularly those who struggle to communicate commissioned autism and learning disability feeling unwell. The charities agreed that health research. checks should be rolled out across the country – and we welcome the pilot proposed in the NHS Long Term Plan. In order to make this a reality, NHSE will need to improve recording of autism in primary care to ensure doctors know who to invite for health checks.

21 Autistica (2016). Personal tragedies, public crisis: the urgent need for a national response to early death in autism. London, UK.

25 26 Chapter four – Mental health

Introduction - Rt Hon Sir Norman Lamb MP

Autism is not a mental health condition, but many autistic people develop mental health problems – often avoidably and because of a lack of support. In the worst cases, autistic people find themselves in crisis, without appropriate support and end up in mental health hospitals. During our inquiry, we heard about the devastating experiences autistic people can have in these services, and the need to overhaul the system for autistic people. People can end up unnecessarily in inpatient IAM Health, which is a research programme mental healthcare, even when they do not need funded by the National Institute of Health aimed Addressing the problems with mental health support was this form of care. Witnesses told us that when at improving mental health outcomes for autistic identified as a key challenge for autistic people, families people do not get the social care support they people. This will report in 2019. and professionals across the inquiry. So many experience need and they reach crisis point, inpatient difficulties in getting the support they need and are mental health services are often the only care Our inquiry has found that three-quarters routinely being let down by the system. Unfortunately, the that people can access. And, this spiralling of adults have tried to access mental health Government’s commitments over the last several years to unmet need, as well as issues with legislation, services, and that significant numbers want ensure autistic people are able to live in their community means that a growing number of autistic people to access counselling or talking therapies. have not delivered the required improvements. We now have an NHS Long Term Plan, which commits are ending up in mental health hospitals against However, the survey and our inquiry also shows to improving community mental health support and driving down the number of autistic people in their and their families’ will.22 that many are not able to access this support. inpatient settings. To make this a reality, the Government needs to take urgent action to reduce the One of the main difficulties autistic people widespread unmet need at every level in mental health services and in social care. So, when people ask for mental health support faced in getting mental health support was early on, they are too often turned away referral. Many reported challenges with self- because they are autistic. But equally when referring, saying they found the process stressful What our research tells us people do not require mental health services, and difficult to navigate. Others felt they were Thousands are developing many are forced into them – also because they overlooked by healthcare professionals who are autistic. often failed to identify or even ignored their In spite of Government efforts over the last ten mental health needs because they were autistic years to move towards a community-based avoidable mental health model of mental health support, our research problems because they 1. Primary mental healthcare tells us that autistic people are being failed by the mental health system. Thousands are cannot access the support Research shows that 71% of autistic children developing avoidable mental health problems 82% have mental health problems, such as because they cannot access the support they of autistic adults they need early on - from depression, anxiety or obsessive compulsive need early on - from preventative services to while disorder, while 40% have two or more and 86% of families social care. preventative services to only conditions.23 Meanwhile, research by Autistica told us the process 14% social care. shows that almost 8 in 10 autistic adults of getting support of autistic adults An overwhelming experience mental health problems during their from mental health and 11% of families majority (76%) of lifetime.24 While there could be many causes for said there were this, our discussions with autistic people and services took autistic adults told us 58% of autistic adults told us they needed their families have demonstrated that the lack enough mental counselling, but less than half (21%) are too long, they reached out for of understanding across society as well as the accessing this support. Sometimes people health services in mental health support absence of support to live, work and take part are told that their mental health problems are their area to meet in their community contribute to poor mental in the last five years, ‘due to their autism’ and they cannot therefore health outcomes. their needs but far too many were receive any help from mental health teams. not able to access this This demonstrates deeply concerning levels Poor mental health should not be an inevitable which is contributing to long waits for support. of unmet need. crucial support. part of being autistic, and the Government must Many told us the only form of support on offer act to improve people’s mental health. To do so, is medication, and that this often does not meet they must take into account the findings from their needs.

22NHS Digital, Assuring Transformation. Available at: https://digital.nhs.uk/data-and-information/data-collections-and-data-sets/data- collections/assuring-transformation/content, (Accessed: 3 July 2019) 232 Simonoff E. et al (2008). Psychiatric disorders in children with autism spectrum disorders: prevalence, comorbidity, and associated 27 factors in a population-derived sample, Journal of American Academy of Child and Adolescent Psychiatry 47(4): pp921-929 28 24Harper, G et al (2019). Autistica Action Briefing: Adult Mental Health. London, UK. For those autistic people who had managed 2. Crisis support “Early intervention, particularly to address it through the Transforming Care to get mental health support, many told us programme. But this programme has that what they ended up getting was not failed autistic people. We heard from many people who said it was in schools for children and appropriate for their needs as an autistic only when crisis hit that they got any support person. Often, counselling was not adapted young women as early as Recent research highlighted by the National – but sadly even then the support is often still and sometimes people’s autistic behaviour was Autistic Society in their Beyond Transforming inadequate. Research in 2018 found that 66% possible, and having the misinterpreted. Professionals must recognise Care report shows an overall increase between of autistic adults have thought about taking autistic people’s needs and behaviour, and services available to support 2015 and 2018 in the number of autistic people their own life, while 35% have attempted suicide, acknowledge that for some autistic people in mental health hospitals and in particular a demonstrating why it is so important we get them in the community is really general talking therapies may need to be 24% rise in reported autistic people without a these services right.25 At that stage, many need adapted or could be inappropriate. In our important. Ensuring that we learning disability.27 One in four of the inpatients timely access to crisis services in the community, survey, 32% of autistic adults rated mental had been in these hospitals for five years or to prevent them from being sectioned and have sufficient crisis response health professionals as having a good or very more.28 For many, these admissions stem from ending up in mental health hospitals. A recent good understanding of autism, which indicates services, when we can see a failure of wider care and support, often Government survey shows that, concerningly, more needs to be done to ensure they are starting very early in life, which could have only 11% of local areas have mental health crisis a crisis escalating for both having proper training. been prevented (for instance being excluded services that support autistic people without children and adults.” from school). learning disabilities.26 “I was unable to access Moira Wilson from the Association of Directors Ending inappropriate admissions autism-specific mental health Research in 2018 found that and speeding up discharge of Adult Social Services help on the NHS in my area, 66% of autistic adults have The Mental Health Act Code of Practice sets so I’ve had to go private. thought about taking their own out that hospitalisation is rarely likely to be There was a resounding call for greater helpful.29 During the inquiry session, witnesses My therapist is absolutely life, while 35% have attempted investment in community-based interventions agreed we need concerted action to reduce the amazing and has helped me suicide, demonstrating why it such as Safe Spaces, which autistic people say number of autistic people who are detained in would be beneficial to their wellbeing in crisis mental health hospitals. To meet the NHS Long so much, but I worry for people is so important we get these situations and have also been found to be Term Plan commitment of halving the number who cannot afford to pay.” services right. helpful to people with mental health conditions of autistic people and people with learning more broadly. Specialist autism teams must disabilities in these services by 2023/2024, Anonymous train and work with mental health crisis teams we need to see a significant investment in to guarantee autistic people can access these community services, including preventative Witnesses at our inquiry session, autistic people types of services, ensuring an understanding of services, social care and mental health support. and their families, reported that crisis services the adjustments that need to be made so that “We need support faster than are not widely available when they need them. services are fully accessible. it is given. Having to wait They also told us autistic people often find it “There is definitely much more difficult to navigate the mental health system months for help with PTSD at crisis point and that self-referral into services 3.  Reducing inappropriate that we need to learn – what can can be particularly challenging when people inpatient care we change about community alongside the autism. CBT is find communication difficult. The inquiry session a long wait too. So parents also highlighted particular challenges for Too many autistic people are ending up in services so there is a better women and girls, who seem to be more likely are being left to struggle. mental health hospitals – often far away from skillset, understanding and more to be identified and diagnosed at crisis point their home, because they have fallen into crisis So many areas do not or in hospital. or are being sectioned due to behaviours that appropriate response to autistic could be perceived as challenging. Research even understand autism.” For many of the autistic people who took part children and families. The data shows that women and girls in particular are in our inquiry who have reached crisis point, Anonymous at risk of being sectioned, often not being suggests that while we have the only form of support offered was being diagnosed until they are in inpatient care. admitted to A&E. The stressful environment can made some progress, of all the Often, they are in these services due to eating compound their situation, and often results in disorders or because they are self-harming, areas where we need to focus we The Autism Act statutory guidance says local people being sectioned due to behaviour that and are only referred for a diagnosis at that areas have to ensure autistic people have can be perceived as challenging. need to learn and do more around equal access to local therapy services, including point. Many women mask their autism and go Improving Access to Psychological Therapies overlooked until they reach crisis point. This autistic people with no LD.” (IAPT). This is clearly not the case and is having is the result of an absence of support from 25Cassidy, S and Rodgers, J (2017). Understanding and prevention Ray James, National Learning a devastating impact on autistic people and of suicide in autism. London: The Lancet. services such as community mental health and their families’ lives – with many being driven to 26Public Health England (2019). Self-assessment exercise 2018: social care. This fact is acknowledged, and both Disability Director at NHS England overview of results. London, UK. crisis point. the Government and NHS England have tried

27The National Autistic Society (2018). Beyond Transforming Care. London, UK. 28Ibid. 29 29Department of Health and Social Care (2017). Code of Practice: Mental Health Act 1983. London: UK. 30 The inquiry session highlighted that one of Improving inpatient care for those • implement the recommendations made by • work with local STPs and Integrated Care the barriers to reducing the number of people who need it the CQC in its Thematic Review on restraint Systems (ICSs) to ensure every area has in inpatient care are funding disincentives. and seclusion prepared clear pathways for young autistic This is because councils, whose budgets are For a small number of autistic people who people to access mental health support that under considerable pressure, fund care in the also have a mental health condition, short- • consider the development of pathways for begin at referral for an autism diagnosis. community while the NHS funds mental health term assessment and treatment might be particular groups of autistic people, eg for This should be focused on preventing the hospitals. Although community-based social necessary for the purposes of treating that women and girls with eating disorders. This escalation of need care is much less expensive than inpatient mental health condition. When that is the case, could involve screening for autism in eating mental healthcare, it still means councils have care and treatment should be of the highest disorder services. • set out and deliver an ambitious plan to to spend more money – and many of them do quality. But the horrifying scenes uncovered move autistic people out of hospital into the not have this. Our witnesses told us that this by BBC’s Panorama at Whorlton Hall and community – succeeding where Transforming NHS England should: can be avoided by pooling health and social the excessive use of seclusion reported in Care has failed. The Government should care budgets, but not enough areas are actually establish an inter-ministerial group to ensure the CQC’s Thematic Review in 2019 leave us • commission community-based mental doing this. It also needs professionals to work cross-Government accountability on the seriously concerned about the quality of care health services that meet the needs of together to create high quality packages of care 30 delivery of this programme for autistic people in mental health hospitals. autistic people, including autism-adapted with support from staff who understand autism. We have heard convincing evidence that this and accessible counselling and low-level • require health bodies and local authorities is also symptomatic of a broken system, which psychological therapy. These should work as part of the development of local plans to Another barrier is the law. As it stands, autism is needs to be fixed urgently. This is key if we closely with specialist autism teams in the area pool budgets when commissioning care for defined as a ‘mental disorder’ under the Mental are to create the responsive, understanding Health Act. This contrasts with neurological autistic people with mental health problems or and compassionate mental health system that • make clear mental health services’ legal conditions like stroke or epilepsy, which can put behaviour that challenges autistic people in England so desperately need. duty to provide anticipatory reasonable people at risk and yet are not included in the adjustments, and share best practice amongst definition. This means autistic people who do • improve practice around Care and Treatment local services not have a co-occurring mental health condition What needs to be done Reviews (CTRs) by providing professionals can be forced to accept treatment and live in with greater clarity on people’s rights to CTRs. • commission community-based crisis services inpatient facilities against their will – and often The Government should: Autistic people and their families should be that meet the needs of autistic people against their families’ wishes. We also heard provided with more information on their • consider the recommendations from IAM rights and entitlements to CTRs too some concern that it could be adding to the • set out to Child and Adolescent Mental Health Health research into how autistic people’s disincentive to create new community services, Services (CAMHS) and Community Mental mental health outcomes can be improved • ensure sufficient advocacy workers with as there is always the ‘backstop’ of admitting Health Services that they cannot use autism someone if lower level support is not in place. when this is published specialist training in autism and learning as an excluding factor when making decisions disability to meet local demand. about whether to support people with mental There is considerable debate about how • commission an independent review of the health conditions to change the law. Some mental health definition of autism as a ‘mental disorder’ professionals are concerned that a change to under the Mental Health Act, consulting with the definition could lead to more autistic people autistic people and their families, charities and ending up in prison, as admission to hospital mental health professionals can be used to ‘divert’ people away from the criminal justice system. At the same time, • set out clear requirements to NHS England, many held a strong belief that this definition local health commissioners and Sustainability is inappropriate. This is clearly a very complex Transformation Partnerships (STPs) on the issue and of the highest importance. We believe need to commission community mental health it needs very careful consideration from the services that meet the needs of autistic Government. people, and ensure that this is implemented

‘Homes, not hospitals’ is a phrase we often • commission a review tracking the journey of hear. It is a good one and we have heard clear autistic people in mental health hospitals evidence that it should be what we are aiming and prisons to develop a better understanding for. But sadly it is also clear evidence that of why they end up in these environments. without concerted action from Government and It must set out how national and local NHS England, it will not be a reality. Government can address the issues that come out of this review

• accept the recommendations from the Wessely review of the Mental Health Act in relation to learning disability and autism in full

30 Care Quality Commission (2019). Interim report: Review of restraint, prolonged seclusion and segregation for people with a mental 31 health problem, a learning disability and or autism. London, UK. 32 Chapter five – Education and preparation for adulthood

Introduction - Huw Merriman MP

In 2017, we carried out an inquiry into autism and the education system, which found that many autistic young people were missing out on the opportunities they require. Too often, they were being held back from achieving their potential, because they were not getting the support they need to succeed at school.

We concluded that autistic children face particular challenges that need to be addressed by the Government, schools and local authorities if the SEND reforms set out in the Children and Families Act 2014 are to work as policymakers intended. We said that the Government needed to create a strategy, similar to the one that already exists for adults, to make sure that the gap What our research tells us the autism spectrum can achieve. This is despite in support for autistic children is closed. the statement in the SEND Code of Practice that “high aspirations are crucial to success”.31 Our inquiry session showed that transition The Government accepted this recommendation, A better understanding is needed of what a points are of particular concern to autistic committing to extend the adult autism strategy to include children and young people for the first good life looks like for autistic people with all people and their families. This is because the time. Our last inquiry shed light on many of the challenges autistic children and their families face in types of needs, and how young people can move from primary to secondary school, from the education system, and made a number of recommendations that still apply today, based on the be encouraged and supported to pursue their secondary school to college, and then from following findings: interests and live the life they want. college onwards, are all times of heightened uncertainty for autistic young people and Members of the National Autistic Society’s their families. • Fewer than half of children and • 40% of parents said their child’s school Young Ambassadors Group told us how important it is that they received tailored rather young people on the autism spectrum place did not fully meet their needs. It was clear from witnesses that autistic young than ‘one size fits all’ support, and that this said they were happy at school. people face many challenges in their move to •  said they helps them pursue their interests into adulthood. Fewer than 5 in 10 teachers adulthood, and that the transitions process were confident about supporting a child It is vital that professionals understand that • 42% of parents said their child was often let them down. Many are not being on the autism spectrum. autism affects individuals in many different refused an assessment of their special properly involved in decisions about their ways, and are prepared to provide flexible, educational needs the first time it was future, do not have enough time to prepare • Six in 10 young people said that the practical support. requested. for adulthood and are not being supported main thing that would make school better as they should. We also heard from witnesses • said their child for them was having a teacher who would Some autistic children become ‘looked after 50% of parents that professionals often overlook autistic young waited more than a year for support understand autism. children’, for example because they live in a people’s aspirations and ambitions, as well as to be provided at school. children’s home or residential school. This means the wider non-academic support they may need that councils have specific duties to keep those to succeed and thrive in adulthood. This must be children safe, promote their wellbeing, and addressed in the extended strategy. As we approached the review of the strategy, we wanted to highlight all of the areas that matter provide them with services (this is known as the most to young autistic people and their families. Many told us a specific area of concern was the council being a ‘corporate parent’). It is vital that lack of support available to prepare them for life after school. In this inquiry, we wanted to 1. Low aspirations and any autistic looked after child, just like any other investigate why people are having particularly difficult experiences during this stage in life autistic child, gets the care and support they and what more the Government can do in the strategy to better support autistic young people limited options need to prepare them for adult life. into adulthood. One of the main problems identified in the inquiry session is a widespread ‘poverty of expectations’ around what young people on

31 Department for Education and Department of Health (2015). Special Educational Needs and Disability Code of Practice: 33 0 to 25 years. London. 34 2. Inadequate preparation Year 9 onwards. We heard from witnesses that 3. Low priority for emotional One of the main issues to emerge from this planning does not always begin even in Year 9, part of the inquiry was the perception that for independent living let alone at an earlier stage. Planning to leave health and wellbeing some autistic children are ‘too able’ – that is, secondary school can be a long and difficult perceived as ‘not disabled enough’ – to be process, and autistic young people often Children and young people on the autism entitled to support. But this impression can “There is a lot of focus on struggle to effectively communicate their views spectrum are at high risk of mental health ignore very significant underlying needs. Focus on what is happening next in their lives.32 problems, with research suggesting that 71% of group participants told us that if children are exams, but nothing really autistic children have a mental health problem.34 doing well academically, their wider social about living on your own Doing this effectively requires time and a holistic This can be exacerbated by a failure to put the needs may be overlooked. This can result in approach. Despite the existence of EHC plans, right support in place – even if, on the face of it, them becoming socially isolated and vulnerable or socialising.” and despite detailed statutory guidance in an autistic child is doing well academically. to bullying, which can then exacerbate mental Member of National Autistic the SEND Code of Practice on joint working for health problems. joint outcomes,33 we heard from witnesses that Witnesses told us that young people who are Society Young Ambassadors education, health and care services too often academically able can nonetheless have very We heard from the National Autistic Society’s do not work together. high needs in relation to social communication, Transition Support Service that this lack of Group and these needs are not always well recognised. support means too many families and young For example, when a young person moves from people have to hit crisis before they get any school to college, they may have a shorter week We also heard that for young people leaving help. Families also report a lack of information One of the most important functions of than at school, leaving them with ‘blank days’. special schools outside their home area, on where to go for support, with a heavy education is to prepare young people for These blank days could be filled with activities there is a risk of becoming alienated from the reliance on word of mouth. adult life. But there is a mixed picture in how that are productive and enjoyable, but often the community. Unless they receive support services effectively this is done for autistic young days are left empty because services are not to help them participate in their (possibly new) people. Our inquiry heard from witnesses that working together to design a holistic week-long local community, their world can shrink and 5. Commissioning is the key services often lack ambition, particularly for programme. they will become isolated. Good social care has a vital role to play in this. Witnesses told young people with the most complex needs, “Commissioning means local who may not receive the support they need to People’s experience of transition the inquiry that there is not a good enough develop necessary self-care skills. To illustrate: understanding of what good social care looks to adults’ services: acceptance of responsibility.” learning self-care skills (such as learning like for autistic children and young people, how to use the toilet) is central to a young beyond the narrow remit of statute. Dame Christine Lenehan, Director, person developing independence and gaining Just over a third Council for Disabled Children employment, exploring hobbies and engaging (36%) of people in their community. It can take a while for a child 4. Lack of support leading who have gone through to embed skills, so it needs to start as early as to crisis possible. But we heard from one parent who the transition to adults’ Getting commissioning right is the solution to many of the problems this inquiry has identified. had been told self-care skills were not a priority services say they were Families told us there is a lack of community Providing the support that autistic children for her son, because he would always need a services to prepare and support their children fully involved. and young people need depends on collecting high level of care. His options for independence into adulthood. Some even told us that while accurate data on the needs of local populations are limited as a result. they may receive direct payments to help them and using this to plan all the education, health Just over a quarter care for their child or young person, there are and care services they will need in the future. not services available to spend it on. Young (26%) received But many local authorities do not have a One of the most important people also say that there are not enough enough information. good enough understanding of what good group activities and that they do not have functions of education is to commissioning looks like. enough opportunities to participate socially. prepare young people for adult Just over a quarter For many young autistic people, their education, life. But there is a mixed picture (26%) felt properly “The Transition Support Service health and care plan remains the best option in how effectively this is done supported. for putting in place everything that is needed answers questions from for them to achieve good outcomes. An EHC for autistic young people. families of young people aged plan should be about a young person’s whole Less than a third life, not just their school day. But the fact that (30%) had enough 20-25 that should have been education is the only statutory part of an EHC The SEND Code of Practice states that preparing time to prepare for answered 10 years earlier.” plan means a child’s health and care needs for adulthood should begin early, and for young can be overlooked. One witness said that in people who have an EHC plan, there should the transition to Rachel Babbidge, Transition practice it becomes “just an E plan”. And for be a formal focus on life after school from adulthood. those children without an EHC plan, we heard Support Manager, National very concerning evidence that support is just Autistic Society not available. SEN Support is often inadequate,

32 Babbidge, R (2017). Leaving school: transition planning for autistic pupils. Available at https://network.autism.org.uk/knowledge/policy- 34 guidance/leaving-school-transition-planning-autistic-pupils (Accessed: 28 June 2019). Simonoff E. et al (2008). Psychiatric disorders in children with autism spectrum disorders: prevalence, comorbidity, and associated 35 factors in a population-derived sample, Journal of American Academy of Child and Adolescent Psychiatry 47(4): pp921-929. 36 33 Department for Education and Department of Health (2015). Special Educational Needs and Disability Code of Practice: 0 to 25 years. London. leading to a steady rise in the number of Witnesses and our survey respondents told • set out schools’ legal duties to provide • set out clear ‘transition protocols’ to support requests for EHC assessments as the only us that too often it appears to be a “dump of reasonable adjustments in school for autistic young people at the point when they move way for children’s needs to be met. information”, with no guidance on what children whose behaviour may challenge from school to college and when they leave an individual family can access for their schools, following a court case last summer,35 college. This should apply to autistic children The SEND Local Offer that every area is required individual child. and provide schools with guidance on how with EHC plans as well as those receiving to have was supposed to improve transparency to do this SEN Support and access to services and support, but it is not The extension of the national autism strategy to working well in all areas. The Local Offer should children and young people is an unprecedented • require schools to teach children and • set out that transition planning should begin be a tool for identifying where the gaps in opportunity to address these issues, and spell young people on the autism spectrum earlier than Year 9 provision are, not simply a directory of all out clearly what support autistic children and about relationships and sexual health in an the services that may (or may not) be available young people are entitled to at school and as accessible way (eg providing clear and direct • extend supported internships to young people in a particular area. Families do not always find they move into adulthood. information), recognising that for these young who have significant needs but who do not the support they are looking for, and many say people this is a ‘hidden curriculum’ and they have an EHC plan, rather than limiting them to they do not find the local offer easy to navigate. may not learn from their peer group young people with EHC plans as at present

• commission the development of a model of • commission a review of how support is What needs to be done what good social care looks like for children provided to autistic looked after children and young people on the autism spectrum across England and act on its findings

In our last inquiry, we set out a number of things that need to be included in the • make clear that the development of self-care, • set out in guidance to councils that their extended autism strategy for children and young people: life skills and social skills should be written into Corporate Parenting Boards should report a child’s EHC plan, without rigid boundaries to local autism partnership boards on their • Autism training should be explicitly • There should be guidance for schools and between what is considered to be ‘education’ performance for autistic children, and attend included in professional development for commissioners on what good educational and what is ‘health’ partnership board meetings all teachers, including head teachers. provision for children and young people on the autism spectrum looks like, based on • work with universities to gather and share best • A specialist curriculum should be provided the large volume of existing evidence. practice on supporting autistic people moving for all pupils on the autism spectrum who into higher education. need this. • Modelling should be available for local authorities to help them commission • The types of reasonable adjustments educational provision that meets the that autistic children may need in schools full range of needs of children on the should be clearly explained. autism spectrum.

• Strategies should be in place to improve • Schools should be required to work with autism awareness and understanding in local mental health services to ensure that all schools, to help reduce bullying and children on the autism spectrum get any improve inclusion. mental health support they need before their problems become severe. • There should be guidance on how special schools and mainstream schools can support each other and transfer good practice.

These all still apply. In addition to this, from the • commit to ongoing support for staff in all evidence we have heard in this inquiry, in the schools to put good policy into practice from new autism strategy, the Government should: the Autism Education Trust.

• commit to underpinning commitments in the • include guidance on how to make classrooms autism strategy for children and young people and the wider school or college environment with statutory guidance more supportive for children and young people on the autism spectrum • require schools and councils to provide information for all families with a child on the • commission guidance on what good SEN autism spectrum on the rights and entitlements Support in schools and colleges looks like of both the young person and the family as the for autistic children and young people young person reaches adulthood

37 35 C&C v Governing Body [2018] UKUT AAC 269 38 Chapter six – Employment What our research tells us 1. Barriers to and opportunities for getting There have been small improvements in awareness among employers since 2016. A into employment YouGov poll in March 2019 of 601 employers Introduction - Thangam Debbonaire MP found that 27% thought an autistic person As in other parts of the inquiry, people told us would be unlikely to fit in their team – down from there is a lack of services to meet their needs. 38 According to the National Autistic Society’s Autism 34% in a similar poll in 2016. Those thinking Employment Gap report, the proportion of autistic people an autistic person required too much support 42 % of autistic adults 39 in full-time work is 16%, with a further 16% in part-time was also down to 31% from 38%. However, told us they need 36 while employers appear more confident that work. Meanwhile, data from the Labour Force Survey employment support, shows just over 51% of all disabled people are in paid an autistic person might fit in, the number that work, suggesting that the autism employment gap is worry they may not get the support right for but just 12% receive it, significantly wider than the disability employment gap.37 an autistic person has increased, as has the meaning that the majority number of employers who do not know where The figure has not changed much over the decade since who need it do not get it. the Autism Act 2009. Whatever other improvements have to turn for advice. The same poll shows a large majority of employers think Government has a taken place – and they have – employment does not seem Our inquiry also found that getting the right to be one of them. key role to play in making sure that advice and information is available.40 social care, benefits or other support affects people’s ability to get into and stay in work. We would like to think of Parliament as a beacon of equality and accessibility for autism but it is not yet. As an In terms of support from councils, we have seen employer of autistic staff members myself, I understand a fall in the number reporting they are following Just 13% said that the the examples of good practice set out in the the need for information and guidance to support people care and support they autism strategy and statutory guidance. What into employment and provide autistic staff members with currently get helps them positive experiences. Unfortunately, this is often lacking, and much more must be done is particularly concerning is the clear fall in the for Parliament to become an example of best practice for employers across the UK. number of councils reporting that support from find – or stay in – work. school to adult services has an employment Meanwhile, 37% said more support Autistic people told us that one of the key barriers for getting into and staying in employment is focus, from 42% to 33%. would help them find work. employers’ poor understanding of autism. This, we heard, often affects people’s ability to access crucial reasonable adjustments across their employment journey, from the application stage to It was also clear throughout the inquiry that When asked about autism understanding thinking about career progression. We believe particular attention must be drawn to guaranteeing unemployment or underemployment can have among a range of professionals, Jobcentre that employers, and those who provide employment support to autistic people, understand autism a significant knock-on impact on other areas Plus staff were reported as being among and their duties to provide reasonable adjustments. of people’s lives, as it can reduce independence and confidence, and leave people at greater the worst for understanding autism. The inquiry showed employers want to do more to recruit, train, employ and promote autistic people risk of loneliness and/or social isolation. but also that they lack the confidence to do so. Government has a key role to play here, both by Through our survey and inquiry sessions, Only 4% of autistic showing what can be done across the civil service and in providing employers with more support. we heard more about what employers, adults said Jobcentre We hope that the recommendations to Government, to Parliament and to employers in this chapter support providers, and the Government Plus staff have a good can help to bring about long overdue improvements in recruitment and retention of autistic people. can do to help remove these barriers. understanding of autism.

This is a shockingly low number and translates into poor experiences, inappropriate placements for work or not putting in place the right support for people to be able to work. It is really important Jobcentres have the knowledge and understanding required to adequately support autistic people and provide them with opportunities that meet their aspirations and skills.

36The National Autistic Society (2016). The Autism Employment Gap - Too Much Information in the workplace. London, UK. 37Office for National Statistics, The Labour Force Survey, Available at: https://www.ons.gov.uk/surveys/ informationforhouseholdsandindividuals/householdsandindividualsurveys/labourforcesurvey (Accessed: 17 July 2019) 38The National Autistic Society (2019). Auto Trader leads drive for businesses to be autism friendly. Available at: https://www.autism.org.uk/ get-involved/media-centre/news/2019-04-03-autotrader.aspx (Accessed: 3 July 2019) 39 39Ibid. 40Ibid. 41Public Health England (2019), Self-assessment exercise 2018: overview of results. London, UK. 40 In both the survey and inquiry session, autistic Online information hubs people and professionals underlined the “The biggest challenge is challenges identified in the Autism Employment Gap report. Several professionals involved in job that we still do not know The internet offers opportunities and skills training identified inconsistent support enough about what sort of for autistic jobseekers, as well as from Access to Work providers as a problem, employers. Richmond upon Thames particularly delays in the Access to Work employment works for autistic developed an online peer support hub process. Judith Kerem, Development Director people. We need to ask for autistic people to support access at Care Trade UK, said this can be a problem to skills and employment, secured in ensuring adjustments are in place from the how they can meaningfully through government funding in 2014. beginning of the employment process: contribute to society and This is designed to build autistic people’s confidence and allow them in a way that enhances to gain access to necessary skills “One thing that is very their wellbeing.” for job applications.

common is inaccessibility James Cusack, Director of Lewisham has also converted its of Access to Work. A lot of Research at Autistica Work Programme centres into Shaw employers are not even aware Trust community hubs that link up employment support and other of it so they can feel they are He also said it was crucial that we collect data services. This includes counselling, on their own, or the advice through the Labour Force Survey to monitor health and wellbeing support, and factors like career progression and under- skills training such as practising mock they get is often not right.” employment. interviews. This allows for support Judith Kerem at Care Trade focused on the ‘distance travelled’ 2. Support for employers in towards employment rather than targets on employment itself. Work Foundation analysis found this increased participant engagement and staff satisfaction.43 recruiting and retaining Some of our witnesses highlighted examples autistic people While these hubs focus on supporting autistic people looking for work, they show of good practice, including “quiet and calm” how services could be coordinated and provide a single place where employers Jobcentres. However, this has only been piloted could access support, training, or more information to support autistic people. in a few Jobcentres so far, meaning that its A key area of discussion in the inquiry session impact has been limited and support is varied was the idea of an online information hub, across the country. which both the National Autistic Society and other disability charities have been calling for. Supported internships also provide a great This would provide employers with information Some employers have recognised autistic workplace, as well as support in the form of opportunity for young autistic people to try and support in one place about best practice people’s potential and have taken steps to peer networks and mentoring. Roxanne Hobbs, work, but again, we heard these schemes are and financial support available. actively seek out employment options. Christos an employment consultant, said that having still few in number and often not resourced to be Tsaprounis from Auto Trader said at the time workplace Neurodiversity Champions could be a sustained in the long term. But autistic people Polling of employers showed support for the of the inquiry session that 7% of its employees way of embedding these wider adjustments and in the session also identified specific barriers to establishment of a hub. However, our witnesses identify as neurodiverse, and talked about support for employers. getting a job in the application and interview highlighted that to be effective, this should the wider adjustments they have made to the process. Interviews are particularly challenging, contain more than just basic information, as people have to deal with new surroundings incorporating the active support employers and questions that are often unanticipated or need – including ways to find specialist support not autism-friendly. if needed and how to help employers support their autistic employees reach their career It is important to remember that while not all ambitions. Emma Kearns from the National autistic people will be able to work, the Autism Autistic Society, who helps support employers Employment Gap report found that 77% of in employing autistic people, also said that she unemployed autistic people want to work.42 supported the hub, but that it needed to bring Both autistic people and professionals made services like benefits and schemes like Access clear that with the right support people with to Work together to help coordinate support. varying needs could work. James Cusack, Director of Research at Autistica, said:

42 The National Autistic Society (2016). The Autism Employment Gap - Too Much Information in the workplace. London, UK. 43 The Work Foundation (2016). Is welfare to work, working well? Improving employment rates for people with disabilities and long-term conditions. 41 42 Case study: Auto Trader What needs to be done • commit to independently monitor autistic people’s outcomes on the Work and Health Programme, and people’s access to Jobcentre In April 2019, the National Autistic Society launched the Autism Friendly Employer In the new autism strategy, the Government must: Plus support Award. Auto Trader was the first organisation in the world to achieve this award, as a result of having implemented specialist standards across recruitment as well as • make autism training compulsory for all • commit to independently monitor the improving awareness of autism and support for autistic employees. Jobcentre Plus staff, making sure staff effectiveness of supported internships have the level of training that reflects their in helping autistic people into work Christos Tsaprounis spoke in our inquiry session about the changes they have made interaction with autistic people at all stages of the employment process and across the company. This includes • make autism training compulsory for encouraging people to disclose before the application process. Christos told us: • appoint an Autism Employment Champion in all Access to Work advisers “What seems to have the most positive results is making sure it is clear in all our each Government department to promote the • commit to ensuring support is available for communications that we are autism-friendly, and ensuring that it is autistic people benefits of employing autistic people autistic people through Access to Work who are helping to deliver this message. People will respond better • make inclusive apprenticeships and supported if they feel it is authentic.” internships available for young people without • encourage employers to work towards EHC plans schemes to improve autism employment, He also spoke about the importance of mentoring support from other autistic like the Autism Friendly Employers Award people in the company: “Having something where everyone at all levels of • create an online autism information hub for management can help support autistic people really helps the autistic person employers, with resources, advice, and clear • review the automatic disbarment of autistic to flourish and is important for changing the culture of the company.” information on how to get more support. people from positions in certain professions, It should be developed in partnership with for instance the armed forces employers (including businesses of different • commission research into the barriers autistic sizes and across industries), autistic people There was strong support in the inquiry session people face in career progression, including 3. Reasonable adjustments and their families for more quiet workspaces or making flexible looking at the support required to support and disclosure working the default. At the same time, there was people to fulfil their ambitions • implement the recording of autism in the a view that reasonable adjustments still need to Labour Force Survey, following the commitment Disclosure was also seen as a barrier throughout be tailored to individual needs, and that a ‘one • commission research on outcomes for people in July 2019 to make this happen, and draw the session. While 58% of autistic adults in work size fits all’ approach should not be taken. There who have reasonable adjustments, and on the findings from the data to develop have disclosed their autism according to the was also a feeling that some of the elements promote good practice on the provision of services and specific interventions for autistic Autism Employment Gap report, many autistic of flexible working, such as hot desking, could reasonable adjustments amongst employers. people across the UK, including as part of the people and professionals spoke about the be very challenging to autistic people, which is country’s ongoing industrial strategy stigma that is still attached to autism.44 why taking into account individual strengths and challenges is so important. Helen Ellis of the National Autistic Society told us disclosure should be one part of normalising One autistic person said that one of the key adjustments in the workplace for everyone: barriers with reasonable adjustments is that “Autistic people are not the only people with it can cause resentment if non-autistic people needs; parents with school runs have needs, assume it is a specific adjustment just for them. people suffering bereavement have needs. We Jonathan Andrews said that adjustments to need to normalise it so that it does not need to the application process, such as allowing all be disclosed like a top secret.” people to have access to interview questions beforehand, not just autistic people, would A consistent theme throughout the session was remove stigma from these adjustments. workplace culture as a whole. “Reasonable adjustments are Plan B,” witness Janine Booth Judith Kerem of Care Trade spoke about said. As identified with Auto Trader, adjustments “unwritten workplace rules”, such as birthday that can be embedded in the workplace as a card collections or after work drinks, which are whole make it easier to hire and retain autistic “rules that we do not learn, but it is assumed people, as well as reducing the stigma of asking we know about them.” As such, she felt it for adjustments. To be effective, it is important was important that any adjustments made for employees to have a good assessment of concerned ongoing support to ensure people what their needs in the workplace might be. stay in work. She said that “an autistic person This will also help employers know exactly needs longer-term support. It is not just a what they should do, in a manageable way. question of a trial. Things change over not just days but weeks and months.”

43 44 The National Autistic Society (2016), Autism Employment Gap. London: UK. 44 To make sure the Autism Act statutory • work towards schemes to improve autism guidance is making a difference, employment, like the Autism Friendly Chapter seven – Access to justice councils should: Employers Award.

• commission social care services to support • t rades unions should have autism or autistic adults to work, where this is something neurodiversity representatives in the the person can and wants to do workplace, who can represent autistic Introduction - Anne-Marie Trevelyan MP people and also inform of their rights • ensure Jobcentre Plus representatives attend to support or to join a trade union. The vast majority of autistic people are law abiding Autism Partnership Boards citizens. In spite of this, autistic people may come into • t he Federation of Small Businesses (FSB) and contact with the justice system for a number of reasons, • ensure guidance about reasonable the Confederation of British Industry should as a victim, a witness or defendant. Some autistic people adjustments and the employer hub is produce guidance for employers and may be more vulnerable to criminal acts against them shared throughout their area, so local develop autism training packages to be or become unwitting accomplices to criminal activity. employers are aware of their responsibilities disseminated with their members. Whichever of these situations apply, autistic people have and good practice. a right to be understood by the justice system. The UK Parliament should also lead by example, making its recruitment and employment Our inquiry sought to uncover some of the issues autistic practices autism-friendly. people face when they interact with the police, the courts To close the autism employment gap, and the prison system. While the Government and other employers and representative bodies should: agencies have taken a number of steps since the autism strategy was last reviewed to try and make the justice • provide the option of flexible working system work better for autistic people, many issues from the start of a person’s employment remain. These can have a profoundly damaging effect on autistic people. In the most serious cases, these problems • encourage managers and employees to undertake autism training and to make may lead to potential miscarriages of justice. their workplace autism-friendly What our research tells us This absence of understanding, many told us, can have deeply negative consequences, for example in misinterpreting signs of distress as At our inquiry session, and throughout our suspicious behaviour. survey, we heard from autistic people and their families about the different experiences autistic In the inquiry session, we also heard about the people are having in the justice system. As in importance of ensuring liaison and diversion other areas of this report, we found a clear services, appropriate adults, and intermediaries lack of understanding amongst professionals are in place in preventing people from ending up in the system. in the system and in supporting those who are (for whatever reason). Too often, though, this is not the case.

Only 6% of autistic adults and 5% of families feel that police officers have a good understanding of autism.

Just 3% of autistic adults and 1% of families feel that criminal justice professionals other than the police, such as courts and prison staff, have a good understanding of autism.

45 46 1. Contact with the police has also recently launched an autism alert card 4. Experiences of courts and communication passport, which helps police officers to identify people’s needs and support “I am an Appropriate Adult Considering that autistic people make up over Once an autistic person is in the justice system, them properly. 1% of the population, the chances of police and assist autistic people the nature of their difficulties may not be coming into contact with autistic people or their recognised or may be misunderstood. This families, is high. Initial contact often comes 2. Liaison and diversion at police stations. I would inquiry heard that this puts autistic people at at a time of heightened anxiety - whether an like to see the police given an increased risk of miscarriages of justice. It autistic person is a victim, witness or suspect. services is therefore vital that legal professionals are It is important that police officers have a good more training on how to familiar with autism. Some steps have been understanding of autism so they are equipped Witnesses raised that liaison and diversion taken to make courtrooms less intimidating for with the skills required to support autistic people services can play a vital role in identifying deal with people on the autistic people. For example, the Equal Treatment and prevent situations from escalating. people who may be autistic when they first Bench Book now includes information about come into contact with the police and in autistic spectrum, autism and reasonable adjustments that can be However, our survey has found particularly diverting them away from the criminal justice put in place for autistic people. In addition, the low understanding of autism amongst police system. While these services can be very especially in interviews re Crown Prosecution Service has developed an officers, in spite of the Autism Act statutory beneficial, witnesses said they are not widely criminal offences. At autism guide for prosecutors. While these are guidance stating that training should be available and that the Government should positive steps, more must be done to improve available to the police. Encouragingly, the ensure there are liaison and diversion services present I notice that the understanding across the courts system, so College of Policing have included information in every area of England. Staff working in these autistic people can be properly supported. about autism in their Authorised Professional services must also have a proper understanding police have little Practice on Mental Health, but this clearly has of autism so they can refer people onto the right During our inquiry, we heard from some experts not yet delivered necessary improvements to services and support. understanding of the issues who believed intermediaries (communication understanding. involved.” facilitators) have the biggest beneficial impact on people’s experience in the courts system, During our inquiry session, we heard about “Taking him into the criminal Anonymous but that they are currently not widely available. research from 2016 that found just 42% of police justice system would have been They are currently only available for witnesses, officers surveyed were satisfied with how they not defendants.47 Witnesses advocated for worked with autistic people, while just 37% of catastrophic for someone so intermediaries to be available for defendants 45 respondents said they had autism training. vulnerable. Never a day goes by too, to ensure they understand questions and are Of those who had not, 92% of officers reported able to fully convey their case. this would be useful, with many saying it would without us being so grateful for help with communication and minimising the common sense and care Witnesses also told us about the importance of distress.46 The impact of lacking autism professionals working in courts having a good understanding was evident in the responses shown by those police officers.” understanding of autism and access to high to our survey. Many autistic people and their Anonymous quality, role-specific training. However, only families told us they got into more trouble after very few autistic adults and families responding an initial encounter with a police officer who did to our survey felt criminal justice professionals not understand their autism. other than the police, such as judges and prison 3. Access to ‘Appropriate staff, had a good understanding of autism. Improving autism understanding amongst these “I can’t emphasise this Adults’ professionals would help to identify whether someone may be autistic and needs adjustments. enough; autistic people are The Police and Criminal Evidence Act Code of Practice states autistic people should have being criminalised through access to an Appropriate Adult - someone who 5. Experiences in prison lack of awareness.” ensures a suspect is treated fairly by police and is able to take part in interviews - due to their Autistic people can end up in prison, just like Anonymous vulnerability. However, we were concerned to anyone else. We currently do not know how hear from witnesses that this does not always many autistic people are in prisons in England, happen. There are incidents of autistic people as this information is not routinely collected, making it all the way to prison without the We heard clear evidence from witnesses that although work in one Young Offenders’ Institute support of an Appropriate Adult. Professionals all, including new recruits and existing police suggested that 4.5% of inmates there were told us making the provision of Appropriate 48 officers, should have autism training. Currently, autistic. Having a better idea of the number of Adults mandatory in all cases where autism is the College of Policing encourages training autistic inmates across the prison estate would known or suspected, as Avon and Somerset to take place, but it is not reaching enough help plan support services in prisons. This could Police have done, is the best way to address officers, which is why many said training should be recorded through the UK Prison Population this. It is also vital that Appropriate Adults have be made compulsory. The Metropolitan Police Statistics. a good understanding of autism. 47 Wurtzel, D. and Marchant, R. (2017). Intermediaries. In Cooper, P., & Norton, H. (Eds.), Vulnerable People and the Criminal Justice System – 45 Crane et al. (2016). Experiences of Autism Spectrum Disorder and Policing in England and Wales: Surveying Police and the Autism A Guide to Law and Practice, Oxford, England: Oxford University Press, pp388. Community, J Autism Dev Disord. London, UK. 47 48 The National Autistic Society (2016). Award-winning Accreditation programme in the prison service. Available at: https://www.autism. 48 46 Ibid. org.uk/professionals/accreditation/events/cjs-award.aspx (Accessed: 26 June 2019) Autistic prisoners can be particularly vulnerable about autistic prisoners. This can lead to 6. Being a victim of • work with relevant agencies to make good due to their social and communication significant problems with the identification quality, role-specific training in autism difficulties, which puts them at risk of being and wider support of autistic prisoners. Early hate crime mandatory for other CJS professionals, bullied or manipulated by fellow prisoners. identification and assessment of autistic such as legal professionals and prison staff Many prison buildings are noisy and brightly lit, prisoners’ needs is crucial, but unfortunately we We heard serious concerns about a perceived which can be overwhelming for autistic inmates. heard that getting an autism diagnosis in prison increase in the number of autistic people who • promote best practice guides and toolkits The evidence we heard suggests that many is often incredibly difficult and that the pathway are the victims of hate crimes. In a recent aimed at CJS professionals autistic people have profoundly negative and for getting a diagnosis can be unclear. Government survey of councils, only 6% of those damaging experiences in prison, which can responding said they record autism in their local • ensure that contact with the justice system, impact their chances of being released and During the inquiry session, several witnesses hate crime statistics.49 This is because police as a suspect or victim, is considered an re-joining their community. highlighted the benefits of prisons going forces are only required to record crimes against indication that an autistic person may have through the National Autistic Society’s Autism autistic people as “disability hate crime”, which social care needs and offer them an Accreditation scheme. Many prisons and is one of the five mandatory strands stipulated assessment as appropriate. This should be “He was sent to prison where he probation services are taking part, including by the Home Office. However, from June 2019, included in updated Autism Act statutory guidance spent six months. He was HMP Wakefield, HMP Parc, HMYOI Feltham and Avon and Somerset Police will be the first the National Probation Service in Lancashire. force to record crimes against autistic people • consider extending the Registered Intermediaries sexually abused in prison and Accreditation is aimed at improving their autism separately. The Government should monitor this, programme to cover defendants as well as witnesses also physically abused which practice. So far, four prisons and a probation and consider rolling this out across all service have achieved the accreditation, with police forces. encourage more justice services to take part • has left terrible scars on him.” a further three working towards this. Training in autism partnership boards Anonymous is key to gaining accreditation, helping staff to understand the different ways autism can affect 7. Representation on autism • record and report on the number of people in prisoners and how to support them. We believe prison who are autistic through the UK Prison One of the major problems identified was a this model could be beneficial to many other partnership boards Population Statistics lack of understanding amongst staff working prisons. One of the challenges raised in making the • require all prisons to improve their autism in prisons, and professionals making decisions justice system work better for autistic people is practice, for example through encouraging the lack of meaningful representation of justice them to work towards Autism Accreditation. professionals in local autism partnership boards. Case study - National Probation Service (NPS) in Lancashire Recent data has suggested that the number of In addition to this, NHS England should establish councils where CJS representatives are actively a national autism diagnosis pathway for prisons. engaged on their partnership boards has Kathryn Bruderer told us, “We were delighted to be the first NPS division to achieve halved from 11% in 2016 to 6% in 2018. This is Autism Accreditation 2018. For several years, we have been working closely with an important local relationship as councils and the National Autistic Society and other partners to develop our approach for justice services are encouraged to work together offenders on the spectrum and those with learning disabilities. This has helped us in providing autism training.50 identify the specific issues faced by autistic people in the criminal justice system as early as possible, and improve the experiences of autistic people in our service. What needs to be done Some of the actions we took were: In the new autism strategy, •3 set up and trained a network of autism and learning disability champions in the Government should: all our North West offices and areas of work • commit to making autism training mandatory •3 designed a development programme for staff including face-to-face training, for all police officers, by working with the e-learning, and reflective practice sessions College of Policing to require all new police recruits to undergo autism-specific training, as •3 successfully lobbied for a change to case management databases to better well as creating a programme for all existing record reasonable adjustments for autistic people officers to receive this training

•3 improved our local partnership working with health and social care and local • consider how best to roll out initiatives, such authority autism leads as the Metropolitan Police’s autism alert cards, which can help to improve interactions • worked as part of the Ministry of Justice’s Autism working group to identify between autistic people and the police and contribute to national developments of its work.” • commit to making the availability of Appropriate Adults mandatory in all cases where autism is known or suspected for all police services in England 49 Public Health England (2019). Self-assessment exercise 2018: overview of results, London.

50 49 Ibid. 50 • nominate an elected member to be an autism • clarify legal duties on local health bodies, and Summary of recommendations champion for the area. This champion should as part of their plans to develop a mandatory regularly report on training and work with the autism training programme, establish a council’s autism lead to improve services. The mechanism for monitoring implementation and Public understanding • set out how it plans to improve social care Government should require this in the new holding providers to account. This should also services for autistic people across England, autism strategy make sure that training is at an appropriate making sure that upcoming commissioning In its new autism strategy, level for each staff member, based on the guidance is used and that services are the Government should: • include a requirement in contracts with social Autism Capabilities Framework and statutory properly resourced care providers to demonstrate that they are guidance • create and fund a long-term, properly funded implementing mandatory autism training • restate to councils their duty to assess national autism understanding campaign, • government (specifically the Healthcare people’s needs regardless of whether they aiming to shift the attitudes and behaviour of • increase investment into preventative services, Quality Improvement Partnership) must commit have a co-occurring learning disability, and millions of people such as buddying or befriending, to improve to commissioning an annual mortality review hold areas that are found not to follow this early intervention and reduce the number of to better understand and reduce premature • outline a plan for ensuring that all public duty to account autistic people ending up in crisis. mortality and health inequalities among buildings are autism-friendly, or are taking autistic adults • make clear how they are going to ensure steps towards becoming autism-friendly, and that the mandatory health and care training meet duties under the Equality Act for autistic Benefits • commission a wide-ranging review of the programme consulted on in early 2019 is people by 2024 data that needs to be collected across health going to be taken forward for all social care In the new autism strategy, and social care to inform and improve health • develop guidance for councils on how to staff, including how it will be resourced and the Government must: interventions for autistic people, and then use their roles in economic development to monitored commit to making sure this is collected promote autism-friendly initiatives (and their • include a requirement in contracts for benefits • require autism to be recorded in all key social benefits) to businesses assessment providers to provide all frontline • commit to establishing and funding an care data sets including Short and Long-Term assessors with autism training, and regularly autism research strategy to underpin future • commission research into the additional Support and Adult Social Care Finance returns monitor compliance. commissioned autism and learning disability barriers faced by autistic people from diverse research. • set out plans to increase and improve social backgrounds and with a range of needs, and • the Government should develop guidance – care and preventative services for older set out an action plan for how to tackle the working with autistic people and their families autistic people, including those with nursing specific barriers they face. – to be disseminated to all providers carrying NHS England should: care needs out benefits assessments on how to properly In addition, as parliamentarians, we believe identify autistic people’s needs and ensure • ensure there is clear leadership for autism • extend and strengthen councils’ responsibilities there is more that Parliament itself can do to assessments truly capture their circumstances. within NHSE, by either expanding the current around providing preventative services under be more accessible and welcoming to autistic role of Director of Learning Disability to the Care Act, and provide the support to make people. As part of the renovation of the Director of Learning Disability and Autism or this a reality locally Parliamentary Estate, Parliament should commit Physical health inequality establishing a separate leadership role at to becoming fully autism-friendly. Parliament Director level • commission research into what care and should consult with autistic people and their In the new autism strategy, support options work well for autistic people • work with the Government to ensure that families about designs for renovations of the Government should: and act to embed the results across councils specialist autism teams are established in the Parliamentary Estate to guarantee the in England. every area environment is more inclusive to autistic visitors, • commit to establishing well-resourced specialist autism teams in every area in staff members and MPs. Underpinning this, the Government needs to England, providing diagnosis, support and • establish a formal structure to hold each area set out how it is going to place the social care information immediately after diagnosis, and to account on diagnosis waiting times (eg the system on a sustainable footing in the longer training to staff in other local services CCG Improvement and Assessment Framework) Support in adulthood term. It must ensure that the needs of autistic for both children and adults people and their families are properly included • commission a comprehensive review into the Social care in plans for a reformed system. suspected gap in life expectancy for autistic • record autism in Local Health and Care people, and put forward plans for how it will Records, to ensure autistic people can be In the new autism strategy, reduce this gap identified and appropriately supported locally the Government must: To better implement the Autism Act at a local level, councils must: • establish and report on a new waiting time • roll out the inclusion of autism in reasonable • commit to establishing well-resourced standard from referral to diagnosis, involving adjustment ‘flags’ on Summary Care Records specialist autism teams in every local • use upcoming commissioning guidance autistic people and their families to identify an by the end of 2020. While waiting for this, NHS authority in England and the autism population calculator, appropriate benchmark wait England should share best practice about being developed by Skills for Care and hospital passports amongst NHS providers • establish an autism social care commissioning the National Autistic Society, to plan and CCGs. This will then help with inputting the fund for councils to use to set up and run and commission services correct information to the flags new autism services and support

51 52 • ensure that the Long Term Plan’s commitments • accept the recommendations from the Wessely • improve practice around Care and Treatment • ensure sufficient advocacy workers with on health checks, embedding reasonable review of the Mental Health Act in relation to Reviews (CTRs) by providing professionals specialist training in autism and learning adjustments (including ‘digital flags’) and better learning disability and autism in full with greater clarity on people’s rights to CTRs. disability to meet local demand. training are taken forward and fully funded Autistic people and their families should be • implement the recommendations made by the provided with more information on their rights • commit to reducing autism diagnosis waiting CQC in its Thematic Review on restraint and and entitlements to CTRs too. times for adults, building on the commitment seclusion in the Long Term Plan to make this happen for children • consider the development of pathways for particular groups of autistic people, eg for Education and preparation for adulthood • provide local commissioners with support to women and girls with eating disorders. This commission accessible autism-friendly services. could involve screening for autism in eating disorder services. In our last inquiry, we set out a number of things that need to be included in the Local health services should: extended autism strategy for children and young people: NHS England should: • ensure they are following the NICE Quality • Autism training should be explicitly • There should be guidance for schools and Standard on autism and each of the Clinical • commission community-based mental health included in professional development for commissioners on what good educational Guidelines in full services that meet the needs of autistic people, all teachers, including head teachers. provision for children and young people on including autism-adapted and accessible the autism spectrum looks like, based on • provide all autistic people with the information counselling and low-level psychological therapy. • A specialist curriculum should be provided the large volume of existing evidence. they need to understand what their autism These should work closely with specialist autism for all pupils on the autism spectrum who means at the point of diagnosis, as well as teams in the area need this. • Modelling should be available for local the option of a post-diagnostic review, and authorities to help them commission The types of reasonable adjustments ensure referrals onto other support happen • make clear mental health services’ legal duty to • educational provision that meets the full systematically provide anticipatory reasonable adjustments, that autistic children may need in schools range of needs of children on the autism and share best practice amongst local services should be clearly explained. spectrum. • be clear of their duty to provide anticipatory Strategies should be in place to improve reasonable adjustments and to act on that duty. • commission community-based crisis services • • Schools should be required to work with that meet the needs of autistic people autism awareness and understanding in local mental health services to ensure that all schools, to help reduce bullying and children on the autism spectrum get any Mental health • set out to Child and Adolescent Mental Health improve inclusion. mental health support they need before Services (CAMHS) and Community Mental their problems become severe. The Government should: Health Services that they cannot use autism • There should be guidance on how special as an excluding factor when making decisions schools and mainstream schools can • consider the recommendations from IAM Health about whether to support people with mental support each other and transfer good research into how autistic people’s mental health conditions practice. health outcomes can be improved when this is published • work with local STPs and Integrated Care Systems (ICSs) to ensure every area has • commission an independent review of the prepared clear pathways for young autistic These all still apply. In addition to this, from the • include guidance on how to make classrooms definition of autism as a ‘mental disorder’ under people to access mental health support that evidence we have heard in this inquiry, in the and the wider school or college environment the Mental Health Act, consulting with autistic begin at referral for an autism diagnosis. This new autism strategy, the Government should: more supportive for children and young people people and their families, charities and mental should be focused on preventing the escalation on the autism spectrum health professionals of need • commit to underpinning commitments in the autism strategy for children and young people • commission guidance on what good SEN • set out clear requirements to NHS England, • set out and deliver an ambitious plan to with statutory guidance Support in schools and colleges looks like for local health commissioners and Sustainability move autistic people out of hospital into the autistic children and young people Transformation Partnerships (STPs) on the need community – succeeding where Transforming • require schools and councils to provide to commission community mental health services Care has failed. The Government should information for all families with a child on the • set out schools’ legal duties to provide that meet the needs of autistic people, and establish an inter-ministerial group to ensure autism spectrum on the rights and entitlements reasonable adjustments in school for autistic ensure that this is implemented cross-Government accountability on the of both the young person and the family as the children whose behaviour may challenge 51 delivery of this programme. young person reaches adulthood schools, following a court case last summer, • commission a review tracking the journey of and provide schools with guidance on how autistic people in mental health hospitals and • require health bodies and local authorities, • commit to ongoing support for staff in all to do this prisons to develop a better understanding of as part of the development of local plans, schools to put good policy into practice from why they end up in these environments. It must to pool budgets when commissioning care the Autism Education Trust set out how national and local Government can for autistic people with mental health address the issues that come out of this review problems or behaviour that challenges

51 C&C v Governing Body [2018] UKUT AAC 269 53 54 • require schools to teach children and • appoint an Autism Employment Champion in To make sure the Autism Act statutory Access to justice young people on the autism spectrum each Government department to promote the guidance is making a difference, about relationships and sexual health in an benefits of employing autistic people councils should: In the new autism strategy, accessible way (eg providing clear and direct the Government should: information), recognising that for these young • make inclusive apprenticeships and supported • commission social care services to support people this is a ‘hidden curriculum’ and they internships available for young people without autistic adults into work, where this is • commit to making autism training mandatory may not learn from their peer group EHC plans something the person can and wants to do for all police officers, by working with the College of Policing to require all new police • commission the development of a model of • create an online autism information hub for • ensure Jobcentre Plus representatives attend recruits to undergo autism-specific training, what good social care looks like for children employers, with resources, advice and clear Autism Partnership Boards as well as creating a programme for all and young people on the autism spectrum information on how to get more support. existing officers to receive this training It should be developed in partnership with • ensure guidance about reasonable • make clear that the development of self-care, employers (including businesses of different adjustments and the employer hub is shared • consider how best to roll out initiatives, life skills and social skills should be written into sizes and across industries), autistic people throughout their area, so local employers such as the Metropolitan Police’s autism alert a child’s EHC plan, without rigid boundaries and their families are aware of their responsibilities and cards, which can help to improve interactions between what is considered to be ‘education’ good practice. between autistic people and the police and what is ‘health’ • implement the recording of autism in the Labour Force Survey, following the commitment • commit to making the availability of • set out clear ‘transition protocols’ to support in July 2019 to make this happen, and draw Appropriate Adults mandatory in all cases young people at the point when they move on the findings from the data to develop To close the autism employment gap, where autism is known or suspected for all from school to college and when they leave services and specific interventions for autistic employers and representative bodies should: police services in England college. This should apply to autistic children people across the UK, including as part of the with EHC plans as well as those receiving SEN country’s ongoing industrial strategy • provide the option of flexible working from • work with relevant agencies to make good Support the start of a person’s employment quality, role-specific training in autism • commit to independently monitor autistic mandatory for other CJS professionals, encourage managers and employees to • set out that transition planning should begin people’s outcomes on the Work and Health • such as legal professionals and prison staff earlier than Year 9 Programme, and people’s access to Jobcentre undertake autism training and to make their Plus support workplace autism-friendly • promote best practice guides and toolkits • extend supported internships to young people aimed at CJS professionals work towards schemes to improve autism who have significant needs but who do not • commit to independently monitor the • have an EHC plan, rather than limiting them to effectiveness of supported internships in employment, like the Autism Friendly • ensure that contact with the justice system, young people with EHC plans as at present helping autistic people into work Employers Award. as a suspect or victim, is considered an indication that an autistic person may Trade unions should have autism or • commission a review of how support is • make autism training compulsory for all Access • have social care needs and offer them an neurodiversity representatives in the provided to autistic looked after children to Work advisers assessment as appropriate. This should be workplace, who can represent autistic people across England and act on its findings included in updated Autism Act statutory and also inform them of their rights to support • commit to ensuring support is available for guidance. Consider extending the Registered or to join a trade union. • set out in guidance to councils that their autistic people through Access to Work Intermediaries programme to cover Corporate Parenting Boards should report defendants as well as witnesses to local autism partnership boards on their • encourage employers to work towards • The Federation of Small Businesses (FSB) and the Confederation of British Industry should performance for autistic children, and attend schemes to improve autism employment, like • encourage more justice services to take part produce guidance for employers and develop partnership board meetings the Autism Friendly Employers Award in autism partnership boards autism training packages to be disseminated • work with universities to gather and share best • review the automatic disbarment of autistic with their members. • record and report on the number of people in practice on supporting autistic people moving people from positions in certain professions, prison who are autistic through the UK Prison The UK Parliament should also lead by example, into higher education. for instance the armed forces Population Statistics making its recruitment and employment • commission research into the barriers autistic practices autism-friendly. • require all prisons to improve their autism Employment people face in career progression, including practice, for example through encouraging looking at the support required to help people them to work towards Autism Accreditation. In the new autism strategy, to fulfil their ambitions the Government must: In addition to this, NHS England should establish • commission research on outcomes for people a national autism diagnosis pathway for prisons. • make autism training compulsory for all who have reasonable adjustments, and Jobcentre Plus staff, making sure staff promote good practice on the provision of have the level of training that reflects their reasonable adjustments amongst employers. interaction with autistic people

55 56 • Matthew Bushell, • Jo Lewis, Parent About this report Evidence sessions The British Association of Social Workers • Dr Katie Maras, Centre for Applied Autism The report is based on an inquiry conducted • Health and mental health, 14 March 2019 • Leo Capella, National Autistic Society Research by the APPGA between March and May 2019. This included an online self-selecting survey, • Public understanding, 1 April 2019 • Dr Peter Carpenter, • Sara Marchant, Gatwick Airport Royal College of Psychiatrists completed by 12,500 people, including 8,210 • Liz Maudslay, Association of Colleges family members and 2,974 autistic adults • Access to justice, 7 May 2019 • Ian Carre, Betty Productions • Melissa McAuliffe, Newham Council in England. • James Cusack, Autistica • Support in adulthood, 8 May 2019 • Cos Michael, Self-advocate We also held six evidence sessions at the House • Angela Cutler, Parent of Commons, which involved MPs and Peers • Employment, 16 May 2019 • Jo Minchin, Self-advocate hearing from autistic people, family members • Ian Cutler, Parent • Ellie Moore, Don’t Panic and professionals working in the field of autism. • Education and preparation for adulthood, • Ian Davidson, Royal College of Psychiatrists In addition to the sessions, we held a focus 20 May 2019 • John Nelson, National Police Autism group with local authority representatives • Helen Ellis, Self-advocate Association during this inquiry, and had a call for • Ian Ensum, Avon and Wiltshire Clinical • Tim Nicholls, National Autistic Society evidence – which received 72 submissions. Commissioning Group • Sarah Pickup, Local Government Association • Dr Sally Fitzpatrick, HM Prison Wakefield • Alex Preston, Solicitor • Dr Ian Gargan, Capita Acknowledgements • Tom Purser, National Autistic Society • Glenn Garrod, Association of Directors • Dr Jacqui Shepherd, University of Sussex The authors of this report would like to thank everyone who took part in our inquiry: of Adult Social Services • Emily Simonoff, King’s College London • Max Green, Self-advocate • Pears Foundation, for funding this inquiry • members of the APPGA: • Joseph Simon, National Autistic Society and report • Tamsin Green, Parent • Baroness Angela Browning, Vice President • James Sinclair, Self-advocate • Jane Harris, National Autistic Society • all the members of the All Party Parliamentary of the National Autistic Society • Jon Spiers, Autistica Group on Autism (APPGA) • Phillip Hanscombe, All Party Parliamentary • Alex Burghart MP Group on Autism Advisory Group • Kerry Thornley, Salford CCG • the National Autistic Society, who provide • Helen Hayes MP the secretariat to the APPGA • Roxanne Hobbs, The Hobbs Consultancy • Moira Wilson, Association of Directors • Louise Haigh MP of Adult Social Services • Jane Howson, Autism Alliance • the 12,500 people who completed the survey • Lord Sterling of Plaistow • Gill Wilson, Channel 4 which has provided invaluable insight into the • Robin Howland, Workman LLP lives and experiences of autistic people and • Dr Paul Williams MP • Jenny Talbot, Prison Reform Trust • Clare Hughes, National Autistic Society their families across England • Lord Bradley of Withington • Zandrea Stewart, Bristol City Council • Anna Javed, National Probation Service • everyone who sent us submissions as part • Anna Thomas, National Autistic Society of the call for evidence. The panellists and witnesses who • Holly Judge, Self-advocate • Jim Thomas, Skills for Care took part in our inquiry sessions, • Emma Kearns, National Autistic Society • The Chairs of our inquiry sessions: listed below, as well as everyone • Christos Tsaprounis, Auto Trader who attended the sessions: • Judith Kerem, Care Trade • Dr Silvana Unigwe, Royal College • Rt Hon Dame Cheryl Gillan MP • Rosie Leatherland, Sibling • Jonathan Andrews, Self-advocate of General Practitioners • Thangam Debbonaire MP • Paul Lelliott, Care Quality Commission • Penny Andrews, Self-advocate • Alison Worsley, Ambitious About Autism • Rt Hon Sir Norman Lamb MP • Dame Christine Lenehan, • Trevor Wright, Self-advocate • Rachel Babbidge, National Autistic Society Council for Disabled Children • Huw Merriman MP • Laura Bennett, Carers Trust • Dr Alexandra Lewis, Consultant Psychiatrist • Catherine West MP • Bryony Beresford, University of York • Anne-Marie Trevelyan MP • Venessa Bobb, Parent • Janine Booth, Trade Unionist • Peter Bowker, Author • Adam Bradford, National Autistic Society • Kathryn Bruderer, National Probation Service • Robin Bush, Autism Together 57 58 We thank the Pears Foundation for Officers: supporting the inquiry and this report. Rt Hon Dame Cheryl Gillan MP (Chair) Jonathan Reynolds MP (Vice-Chair) The All Party Parliamentary Group on Autism (APPGA) is a formal cross-party Lord Touhig (Vice-Chair) backbench group of MPs and Peers who Lisa Cameron MP share an interest in autism. It was set up Thangam Debbonaire MP in February 2000. Its role is to campaign Baroness Hollins in Parliament for greater awareness of Huw Merriman MP autism, and to lobby the Government for improved services for people on the Cat Smith MP autism spectrum and their carers. Lord Sterling of Plaistow Christina Rees MP Baroness Uddin Lord Warner

Mike Wood MP

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