Growing in to Autism

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We are clear that restrictive practices should only ever be used as a last resort, when all attempts to de-escalate a situation have been tried. In November 2018, we passed the Mental Health Units (Use of Force) Act, also known as Seni’s Law, to increase oversight and management over the use of force in mental health settings. We published the draft statutory guidance on the implementation of the Act for consultation in spring 2021 and will set out a full timetable for commencing the Act at the earliest opportunity. By 2026, we want to demonstrate that we have significantly improved public understanding and acceptance of autism, and that autistic people feel more included in their communities and less lonely and/or isolated. We want the public to have a better understanding of autism and to have changed their behaviour towards autistic people and their families. This new strategy aligns with the existing statutory guidance on implementing the Autism Act for local authorities and NHS organisations to support implementation of the Adult Autism Strategy (2015). This sets out local authorities’ and NHS organisations’ duties to support autistic adults and remains in force, which means that local systems should continue to deliver on existing requirements, including having active Autism Partnership Boards in local areas. This guidance will be reviewed in subsequent years of the strategy, to ensure it aligns with actions we take in implementation plans for years 2 and beyond. Meanwhile, for children, the Special Educational Needs and Disability ( SEND) Code of Practice (2015), continues to place duties on local authorities, NHS organisations and schools in respect of autistic children and young people. In addition, we want to ensure that autistic people can get the adaptations or extra support they need while in work, or to get into work. As government, we will lead the way in becoming a more autism-inclusive employer by expanding our Autism Exchange Internship Programme, which is aimed at providing more autistic people with experience of working in the Civil Service. We will also begin to collect data on the number of autistic people working in our departments to understand further improvements we may need to make to recruit and support autistic people. Early identification can play an important role in enabling children and young people to get timely support, which is crucial in preventing escalation of needs. That is why we are going to significantly expand a school-based identification programme based on a pilot in Bradford from 10 to over 100 schools over the next 3 years. This involves health and education staff working together in schools to assess children suspected to be autistic. Early findings from the pilot are positive, with children being identified and getting support earlier. As part of this work, we are monitoring indicators of prevalence of autism in girls as current assessment and diagnostic approaches identify a higher proportion of boys than girls as autistic. We want to test whether novel approaches can improve identification and will include this within our evaluation of the programme.

Some autistic people will need very little or no support in their everyday lives while others may need high levels of care, such as 24-hour support in residential care. People may need help with a range of things, from forming friendships, coping at school, managing at work, or being able to get out and about in the community. In this strategy, we also talk about neurodiversity, which refers to the different ways the brain can work and interpret information. It is estimated that around 1 in 10 people across the UK are neurodivergent, meaning that the brain functions, learns and processes information differently ( Embracing Complexity Coalition, 2019). Why a new autism strategy is needed In addition, to prevent more autistic people from being avoidably admitted to inpatient care, we need a better understanding of the types of community support that meet autistic people’s needs before and during crisis. That is why, as part of the Building the Right Support Delivery Board, our Advisory Group of people with lived experience, the LGA and ADASS are leading work to review best practice models of community-based support for autistic people, people with a learning disability or both. The LGA and an NDTi-led partnership will also continue to roll out their Small Supports programme to an additional 8 Transforming Care Partnerships across the country. This programme involves working with and encouraging the establishment of small providers that promote people’s individual choice and control in the community. Improving the quality of inpatient care for autistic people and facilitating timely discharges from inpatient careSome autistic young people need support to get into employment, and we want to ensure more people can get this. That is why we are strengthening and promoting pathways to employment, such as Supported Internships, traineeships and apprenticeships. To make this happen, we are working to support all local areas to develop Supported Employment Forums bringing together employers, Jobcentres, education providers, local authorities, young people and their parents to discuss employment opportunities for young people with SEND in their local areas. These forums will focus local skills provision on local employment needs, publicise opportunities for young people with SEND, including to employers, and create work placement opportunities for autistic young people. As COVID-19 restrictions ease, we will be able to continue making our Jobcentre network more welcoming and supportive to autistic customers. We will continue to upskill staff and increase the number of Disability Employment Advisers to support our Work Coaches. We are also looking at ways of adapting physical spaces and ways of working to better support autistic people. We will be taking this forward through our Health Model Offices, which are Jobcentres that provide more intensive support to disabled people and test innovative approaches to disability employment support. In addition, we will continue to promote the Autism Centre for Research on Employment’s (ACRE) free Autism Employment Profiling Service, which went live in October 2020 and enables Jobcentres to signpost and provide appropriate support to autistic people without a learning disability. By 2026, we want the SEND system to enable autistic children and young people to access the right support, both within and outside of education settings. By the end of this strategy, we want transitions into adulthood to improve, so that more autistic young people are able to live well in their communities, find work or higher education opportunities. We want these improved transitions to result in fewer mental health crises and admissions into inpatient care. We will also review cross-Civil Service learning and development to ensure that neurodiversity is an integral part of courses, to enable managers to recruit and support neurodivergent employees. Furthermore, the Ministry of Justice ( MoJ) continues to work towards the Autism Friendly Award at the MoJ headquarters, to improve accessibility and support for autistic visitors and staff. The MoJ will share learning with other government departments. Making transport and communities more autism-inclusive When compared to the decrease in overall inpatient numbers, the data shows that the decrease for people with an autism diagnosis has not been at the same rate. As of the end of June 2021, there are still 1,200 people with an autism diagnosis in these settings ( Assuring Transformation, July 2021). There are several reasons why the number of autistic people in inpatient care has not reduced over this timeframe, including better identification and diagnosis of autism when people are admitted into inpatient care. While we are making progress in discharging people, too many autistic people (particularly adolescents and young adults) are still being admitted into these settings. This is because they often struggle to access community support, including social care, mental health and housing support before their needs escalate. This is not always available at the right time or tailored to their needs. The law also currently allows clinicians to admit autistic people to inpatient care without them having a clear mental health need, which can result in inappropriate admissions.

We’ve also learned some valuable lessons from the pandemic, from the benefits of flexible working to new ways of providing community support online, and the need to improve data collection about autism so we have a deeper understanding of people’s experiences across health and care services. take action to strengthen and promote pathways to employment, such as Supported Internships, Traineeships and apprenticeships, and work to support all local areas to develop Supported Employment Forums I thought I had likely done such a good job of masking in front of him that he would reject the suggestion as ludicrous. At the end of one of our sessions, and with my husband there for moral support, I asked the “hand on the doorknob” question: “Do you only do diagnostic assessments for children, or do you diagnose adults as well?” Global prevalence of autism: A systematic review update. Zeidan J et al. Autism Research 2022 March. We will have achieved the targets we set out in the NHS Long Term Plan for reductions in the number of autistic people and people with a learning disability who are mental health inpatients by 2024. We are also seeking to modernise the Mental Health Act and will bring forward changes which would mean that autistic people are only admitted to inpatient mental health settings if absolutely necessary. These changes would mean that autism alone is no longer a lawful basis for ongoing detention in inpatient care and would enable people in inpatient care to be discharged as soon as they are well enough to leave.

About Sandra Thom-Jones

The introduction of the Autism Act 2009 was ground-breaking because it was the first disability-specific piece of legislation in England. Over the decade since its inception, it has resulted in improvements in support for autistic adults across the country, and greater awareness of autism in society. However, we know that more still needs to be done to improve autistic people’s lives. It’s not uncommon for children to have a delay in speaking. Professor Happé says, “A delay in speaking at the level of your peers is not uncommon at age three or four. When it goes on longer than that, it begins to be more of a concern. If children are not speaking when they're five or six, there will be a concern that without some help, they may not develop speech.” By 2026, we will have made headway on reducing the health and care inequalities autistic people face, and show that autistic people are living healthier lives. This includes evidencing that we are making progress on improving autistic people’s health outcomes and reducing the gap in life expectancy.

with transition from one activity to another, a focus on details and unusual reactions to sensations. The Mental Health Act white paper consultation made a number of proposals to improve the availability of community support and prevent avoidable admissions. This includes new legal duties on NHS local systems and local authorities to ensure an adequate supply of community services. To enable local areas to better plan for services and prevent avoidable admissions, it also proposed a duty on local areas to monitor the risk of crisis for autistic people and people with a learning disability. Furthermore, to ensure autistic people are only admitted if there is a therapeutic need, we proposed that an autism diagnosis should not itself be grounds for detention under the Act, and that mental illness should be the reason for any inpatient admission. We will issue our response to this in summer 2021. In September 2020, we published our Plan for Jobs to protect, support and create jobs during the COVID-19 pandemic. In this plan, we outlined a number of actions that will also benefit autistic people, including increasing the number of Work Coaches, who provide help to people who are newly unemployed and making sure that Jobcentres continue to be open to help customers who really need face-to-face support. We will continue to review how our provision meets the needs of autistic people as we move out of the COVID-19 pandemic, and tailor our response based on this. In addition, we will continue to ensure that job programmes are accessible to autistic candidates. Our commitments in the first year Available scientific evidence suggests that there are probably many factors that make a child more likely to have autism, including environmental and genetic factors. Below, we set out our vision for what we want autistic people and their families’ lives to be like in 2026 across 6 priority areas, and the steps we as national and local government, the NHS and others will take towards this within the first year of our implementation plan (2021 to 2022). We will refresh this implementation plan for subsequent years of the strategy, setting out further actions we will take across government, working in partnership with local authorities, the NHS and the voluntary sector, as well as autistic people, to enable us to move closer towards our vision.

Advice for parents

continue to promote employment support programmes, including Access to Work and IPES to autistic people who are at least a year away from work I know a lot of people are hesitant about seeking a diagnosis. Parents particularly have spoken to me about their reluctance to seek a diagnosis for their child, or to disclose a known diagnosis to the child. They express a reluctance to “label” their child and worry that being identified as autistic will damage the child’s self-esteem. This research, as well as autism charities’ Left Stranded report, have informed our focus for this new strategy, and particularly the actions we are taking in the first year. For example, the pandemic highlighted gaps in data relating to autistic people and reinforced the need to improve collection and reporting across health and social care, as well as other areas. That is why we are committing to develop a cross-government action plan on improving data in the first year of the strategy. Approach to this strategy As we set out in the Building the Right Support national plan in March 2015, all autistic people should have the opportunity to participate in their communities among friends and family, and live in their own home or with people they choose to live with. We are clear that people should not be in inpatient mental health settings unless absolutely necessary for clinical reasons, and set out our target of a 50% reduction in the number of autistic people and people with a learning disability in these settings by 2023 to 2024 (compared with March 2015 levels) in the NHS Long Term Plan. Since 2015, we have made progress towards this target, as we have achieved a net decrease in inpatient numbers of 28% as of June 2021 ( Assuring Transformation data). We are deeply grateful for Dame Cheryl’s tireless work to improve support and services for autistic people and their families across the country, in particular for the inquiries she led as Chair of the APPGA. The findings from the 2017 inquiry into the education system contributed to our decision to extend the autism strategy for the first time to children and young people. Furthermore, the 2019 inquiry into the impact of the Autism Act 10 years on from its enactment has been vital in the development of this new strategy. We will all remember and are deeply grateful for Dame Cheryl’s perseverance, drive and contributions to improving the lives of autistic people and their families across the country. Joint ministerial foreword