Growing in to Autism

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Because Murray understands language his situation is fairly rare. “Just a small proportion of autistic people will have good intellectual functioning, good understanding of language but an inability to produce speech. And for some of those, they'll be able to use alternative augmentative communication devices, (like a tablet or laptop) to independently type for example.” improve understanding of autism among educational professionals by continuing to provide funding for autism training and professional development in schools and colleges in 2021 to 2022 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).

Some 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. We will set measures of success for each of the priority areas in the strategy to make sure we can effectively monitor progress in year one and beyond, being clear about what we expect to achieve by 2026. This is important in knowing and demonstrating that we are making a difference to autistic people and their families’ lives. By the end of this strategy, we want life to be fundamentally better for autistic people, their families and carers. We want to be able to demonstrate that we have transformed autistic people and their families’ lives by: Improving understanding and acceptance of autism within society As a society, we’ve come a long way since the landmark 2009 Autism Act. We’ve never had a greater public awareness of hidden disabilities like autism. That awareness is increasingly reflected in how our country is run, from the NHS to local government services. I want to underline my thanks to everyone who played their part in helping us keep each other safe. I understand just how much this disruption has taken its toll on autistic people’s livelihoods and mental health. By the end of the strategy, we want many more organisations, businesses and public sector services to have become autism-inclusive, so that autistic people can engage in their communities, just like everyone else. This will mean taking part in initiatives like Autism Hour, the Autism Friendly Award or taking other steps to become more autism-aware. In 5 years’ time, we want to show that autistic people feel more able to take part in their communities than they do today, including feeling more comfortable using public transport.

What is masking?

We want to improve how the SEND system works for children with special educational needs, including autistic children and young people, and their families. This will include putting forward proposals to improve early identification of children and young people’s needs, and making sure that the health, social care and education systems work together to support children holistically before their needs escalate. We will be putting forward proposals to improve the system in the SEND review, which we will publish as soon as possible. Receiving a timely autism diagnosis is vital in getting the right support and helping autistic people and those supporting them to better understand their needs. While many more adults are receiving a diagnosis than when the first autism strategy was published over 10 years ago ( Autism Self-Assessment Exercise), too many people are still waiting longer than the National Institute for Health and Care Excellence (NICE) recommended 13 weeks between referral and first assessment. Autism Waiting Times statistics, which are still experimental, indicate that many wait longer than the recommended 13 weeks. 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 move out of the pandemic, I encourage us all to take part in levelling up society. In particular, I hope that employers across the country, including the public sector, will help more autistic people get into work and make sure they provide the reasonable adjustments people need to thrive, making use of the support that is being made available. In Growing In to Autism, Thom-Jones tells the story of gradually realizing that she was autistic, and that she experienced the world in ways which were markedly different from neurotypical people. This was a profound awakening - throughout her life she had been masking her true self and this effort had come at great physical, mental and emotional cost. Applying her skills as an experienced and expert researcher, Thom-Jones delved into the literature on autism in adults, learning much more than she already knew as a parent of two autistic boys.

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. improving autistic children and young people’s access to education, and supporting positive transitions into adulthood 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. 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.

We are clear that in some areas work will only begin after the first year (2021 to 2022), and in many there will need to be additional actions in the subsequent years of the strategy to fully realise our vision. In some areas work is still in early stages or ongoing so we will wait on findings or further progress before we take action. This includes the National Autistic Society’s research on developing a tailored Improving Access to Psychological Therapies (IAPT) model and the development of Oliver McGowan Mandatory Training for health and care professionals. Once developed, this can be adapted to other public servants, including the police or housing officers. In other areas like employment, we have work underway to improve support for autistic people but will monitor the full impact of the pandemic to ensure we are continuing to take the right actions. fund an expansion of an early identification pilot programme, which involves health and education professionals working together in schools to assess children who may be autistic or have other special educational needs Flo I wanted this film to tell you that. But it’s been really hard to go, I’ve always been kind of acting. functioning among autistic people varies widely, extending from profound impairment to superior levels. In 2021, too many autistic people still face long waits for their diagnosis – and do not always receive support that is tailored to their needs at an early enough stage. Far too many autistic people still struggle in childhood, both with getting a diagnosis and with support following a diagnosis, including at school, and find it hard to get a job when they reach adulthood.

By the end of the strategy, we will have also delivered significant improvements to the provision and quality of community support, including social care, mental health and housing support. This will prevent more autistic people from reaching crisis point. For autistic people who really need care in inpatient settings, we want to show this is of high quality, therapeutic and tailored to their needs, and as close to home as possible. We want schools to become more inclusive to those with protected characteristics, including autistic children and young people, which is why we will launch a new anti-bullying programme. This will be important in making schools more welcoming and understanding, improving autistic children’s experiences of education as well as their ability to succeed. We expect this new programme to begin in September 2021. In recognition of the role that mental health can play in determining children and young people’s experiences in schools, we are also putting in place new Mental Health Support Teams and training for Designated Senior Mental Health Leads within schools, which will also benefit autistic pupils who are more likely to experience poor mental health. We are aiming to start rolling this training out in the next academic year 2021 to 2022. carry out a new anti-bullying programme in schools, to improve the wellbeing of children and young people in schools, including those who are autistic

Autism and conversations

Autistic people see, hear and feel the world differently to other people. Autism varies widely and is often referred to as a spectrum condition, because of the range of ways it can impact on people and the different level of support they may need across their lives. While autism is not a learning disability, around 4 in 10 autistic people have a learning disability (Autistica). Murray’s mum That just sums up everything about Murray, and it’s just lovely to be telling us how his world is. Flo So I became a version of myself I thought those around me would accept. I became a mimic, copying other people, imitating normal behaviour, and suppressing anything weird. For most people these rules come naturally, automatically. Their faces match their voices, match their feelings. But I had to think about every little thing. In the end I put so much effort into this mask of normality that nobody could even tell that I had one. When you’re autistic, masking, camouflaging, it’s a survival strategy. Its to avoid judgement or avoid bullying. It’s a way to fit into the non-autistic world. Lancet retracts Wakefield’s MMR paper. Dyer C. BMJ 2010;340:c696. 2 February 2010 (https://pubmed.ncbi.nlm.nih.gov/20124366/) 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 the end of the strategy, we will have made demonstrable progress on reducing diagnosis waiting times and improving diagnostic pathways for children, young people and adults across the country. Autistic people will be able to access a high quality and timely diagnosis, as well as the support they need following diagnosis. We will have also made progress on improving early identification of autism, so more children and young people can get the support they need at an early age.Perhaps a quarter of autistic people will have minimal spoken language.” says Professor Happé, “most of them will have intellectual disabilities as well.” Thinking about how neurotypical people (people who are not autistic or neurodivergent) mask, can be a helpful way to understand how neurodivergent people mask. To monitor our progress on reducing waiting times, we will continue to collect and improve data on autism diagnosis waiting times and identify areas that are not meeting the NICE-recommended 13 weeks between referral and assessment ( Autism waiting times statistics, NHS Digital). In addition, we are developing an action plan with NHSE/I and NHS Digital to enable us to report on diagnostic waiting times for children and young people. Current data on diagnostic waiting times is based on reporting of diagnoses by mental health organisations, while community services where children are usually diagnosed are not reported. Improving health and care professionals’ understanding of autism To improve transitions into adulthood, we will continue our work to ensure education staff have the skills required to support autistic young people during this time. That is why we are including transitions as a topic within our programme of school and college workforce training and development on SEND. As part of this work, we are ensuring that preparation for adulthood is discussed much earlier in young people’s school careers to ensure that they are given appropriate information, advice and guidance. resume the ‘it’s everyone’s journey’ campaign to create a more inclusive and supportive public transport environment for disabled people