Foreward
Louise Chandler is an autistic young person and autism advocate. In the foreword that follows, she shares her experiences, reflections, and feelings about the process of moving on from children’s social care and health services, providing key insights for all practitioners reading this guide.
‘Moving from childhood to adulthood can be a time of uncertainty for many young people. However, when facing the additional barriers of being an autistic person in a world that is not designed for you, that anxiety and uncertainty is amplified.
Preparation for adulthood is often framed in practical steps - education, employment and living. While these elements are essential, moving into adulthood for autistic young people goes beyond the logistics, how it feels is vital. There may be uncertainty about what comes next, a sense of isolation as we watch our peers move forward while we feel stuck in an ‘in-between’ phase. It may be a constant struggle to have our needs understood. But it might also be a time of hope - hope that we will have the right support when we need it, hope for an opportunity to experience belonging, to build connections in our communities and fulfil our own dreams for the future.
“For transitions to be truly effective, practitioners must recognise young people as the experts in their own lives. Young people and those close to them must be at the centre of the process. This means considering our own strengths and areas of struggle, as well as our dreams for what our future looks like.
“An 18th birthday is often a time of celebration and excitement, but it can also feel like an overwhelming cliff edge, where, overnight, support drops off, causing sudden uncertainty. Having early conversations is key so that autistic young people have time to adjust, feel prepared and to develop our skills.”
“The professional who took the time to ask what I truly wanted in my life, listen to the answer and believe in me, when it felt like the world was against me, changed my life in ways that I will never be able to describe. We all have the power to make that difference for autistic young people.”
Introduction
Introduction
This guide has been created by the Council for Disabled Children (part of the National Children’s Bureau) in partnership with Partners in Care and Health. The contents of the guide have been co-produced through a rapid review of the literature on successful transitions from children’s social care and health services for autistic young people, as well as engagement with experts by experience, parent carers and a range of different practitioners.
Aim of the guide
This guide aims to support practitioners in helping autistic young people transition from children’s social care and health services into fulfilling adulthoods, regardless of their future support needs. While many children and young people receive support during childhood through education or other children’s services, this often ends at 18—even though vulnerabilities, low-level needs and needs that fluctuate may remain. The guide is inclusive of those moving on to adult services and those who are not eligible but still require structured, person-centred, and holistic transitions. It aims to reduce the “cliff edge” effect young people and their families may face when formal support or specific support from children’s services ends.
This includes practitioners based within children’s and adults’ social care and health services, as well as practitioners who work with young people that access these services, such as those who work within educational settings. These practitioners play a vital role in supporting young people and their families on their journey into adulthood.
This guide is not intended to cover autistic young people with a diagnosed learning disability, but practitioners may find that some of the contents are also applicable to this group of young people and their families. Similarly, the guide is not specifically designed for autistic young people with other neurodiverse needs, but it is likely that elements of this guide will be helpful for this group of young people and their families. Resources have also been included in a resources section at the end of this guide with links to support for these groups of young people.
This guide focuses on making the move from children’s health and social care services smoother, more child- and family-centred, and more effective, to help young people achieve fulfilling adulthoods. It highlights the importance of a successful transition, some common barriers to this, and best practice principles
The importance of an effective move on
Transitions are a journey that occur over a lengthy period of time and are not just a process or a one-off event.
For most children and young people, thinking about and preparing for fulfilling adult lives starts very young. Aspirations to be doctors, vets, teachers, fire fighters, ballet dancers and chefs start as soon as children and young people become aware of those roles, alongside early romances, strong friendships and connections to their communities and through their hobbies and experiences. Whilst not all young people go on to have the specific role they aspire to in childhood, the importance of dreams as a driving force and motivator throughout childhood and adolescence cannot be underestimated. For autistic children and young people, there are a range of barriers to a positive experience of this journey from childhood, through adolescence, and into adulthood, some of which is explored in the next section.
When autistic children and young people are not well supported during their transition from children’s health and social care services, gaps in provision may arise. These gaps can contribute to unmet needs and increased vulnerability, including a potential decline in mental health, which may result in young adults accessing support in more complex or crisis situations. This transition period can also bring increased exposure to risk from others, particularly if planning and support are limited. Additionally, for autistic individuals who go on to or aspire to become parents, insufficient preparation for adulthood may lead to challenges that increase the likelihood of safeguarding concerns, especially if tailored support around parenting has not been provided as part of their transition planning.
Intersectionality
When supporting autistic young people to move out of children’s services, it is important to remember the intersecting experiences of young people’s backgrounds and identities. For example, an autistic young person who has parents with English as an additional language may face additional barriers with involving their parents in the moving on process. In addition to this, individual young people and their families might be experiencing other major life changes during the point of moving on, such as the loss of a family member or a change of living circumstances, and so it is crucial that individual circumstances are considered. Taken together, this can amount to a significant amount of change occurring simultaneously, and it is important that practitioners hold this in mind when working with young people and their families as they move on
Barriers to successful transitions: identifying the challenges
Social and communication challenges
Masking is a particular challenge for autistic young people. The National Autistic Society [1] describes masking as:
A strategy used by some autistic people, consciously or unconsciously, to appear non-autistic in order to blend in and be more accepted in society. Masking can happen in formal situations such as at school or work and in informal situations such as at home with family or socialising with friends.’
Whilst the National Autistic Society acknowledges that there is a need for further research into how common masking is amongst autistic young people, there are a number of reasons why someone might mask in relation to social and communication needs, for example:
- to hide discomfort in environments that are not autism-friendly (for example because they don’t want to cause a fuss or inconvenience others, or because they may not be believed and/or expect to be told they are being dramatic or over the top)
- to compensate for the social and communication differences between autistic and non-autistic people (known as ‘the double empathy problem’, which says that when people with very separate experiences of the world around them come together, they are likely to struggle to empathise for each other) especially when non-autistic communication styles and preferences are assumed to be the 'correct’ way.
- to cope at school and avoid negative attention or punishment (for example for moving around or stimming, which refers to often repetitive self-stimulating behaviour that can help children and young people to regulate
- to improve employment opportunities and keep jobs
- to make and maintain friendships and relationships.
Individuals with lived experience have noted that social isolation and loneliness can be significant challenges after transitioning into adulthood. Changes in professional support—such as health and social care practitioners no longer being involved—can contribute to these difficulties. Additionally, community and universal services may not always provide reasonable adjustments , which are intended to ensure equal access for disabled people by removing barriers. For example, one young person wished for her father to assist with phone calls and form completion but was informed that her father could not speak on her behalf once she turned eighteen. In some cases, there may be an assumption that young people should manage these tasks independently, even when this may not be feasible. Opportunities to provide reasonable adjustments that could ease these transitions are not always taken.
Experts by experience and parent carers explained that the ability of an autistic young person to carry out certain tasks or activities can fluctuate, which means that there can be a risk of over or underestimating what somebody’s ability might be in various aspects of their life. The onus can then often be on young people to learn or develop skills to manage things in a similar way to non-autistic young people, which can lead to significant anxiety, stress and in some cases masking.
Lack of awareness and understanding in society
Parent carers and experts by experience shared that people often make assumptions around them:
They think if you are articulate or intelligent then it can't be possible that you might need help” – young person.
This can lead to misunderstandings or stigma surrounding autism and reduce opportunities for inclusion [2]. In many cases this can also lead to stereotyping and discrimination, as well as a deficit-based perception of autism that negates the many unique strengths of autistic people. Some experts by experience reflected that this is not always the same for other needs for example, asthma, where adjustments are often easily accepted and there is less stigma.
This lack of awareness and understanding is also reflected in the workplace, with research in 2016 showing over half of surveyed autistic adults reporting bullying, harassment, or discrimination in the workplace and with 60 per cent of employers reporting they are unsure of how to support autistic employees effectively [3].
Overloading environments (for example, sensory triggers like noisy offices) and a lack of reasonable adjustments can also hinder productivity.
Further still, for some young people, a lack of societal awareness and understanding can lead to diagnostic overshadowing. The National Institute for Health and Care Excellence (NICE) define diagnostic overshadowing as ‘when the symptoms of physical ill health are mistakenly either attributed to a mental health or behavioural problem or considered inherent to the person's learning disability or autism diagnosis [4].
Employment and education barriers
Experts by experience and parent carers have shared that school can be a challenging environment for some autistic young people leading to trauma-based anxiety and negative associations. While many schools are working to create more inclusive settings, transforming long-standing systems and cultures takes time, resources, and ongoing commitment. At times, a limited understanding of autism within educational environments can contribute to difficulties, including misunderstandings of behaviour that may lead to school refusal or permanent exclusions [5].
In addition, access to diverse vocational pathways and awareness of alternatives to higher education can vary, and reasonable adjustments in further and higher education are not always consistently applied. These factors can contribute to mismatches between education experiences and job market expectations, such as under- or over-qualification, and may limit opportunities to develop soft skills like teamwork—skills often highlighted by employers as important.
Communication styles can also present a barrier. There may be an implicit preference in some education and employment settings for non-autistic ways of communicating, which can unintentionally suggest that autistic people lack communication skills, rather than recognising the value of mutual understanding and adapting communication on both sides.
Experts by experience have also noted that neurodivergent young people may not always feel fully included or encouraged in education and employment. Recruitment processes, for example, may not consistently offer adjustments. A 2023 Autism Insight Panel hosted by the National Autistic Society found that only 11 per cent of autistic applicants who disclosed their diagnosis were offered reasonable adjustments during the recruitment process. In some cases, employment support programmes—such as those offered by Jobcentre Plus or the Work Programme—may not fully reflect the needs of autistic individuals, and traditional interviews can sometimes be perceived as assessing conformity to social norms rather than relevant skills for the job [6].
These combined challenges contribute to higher unemployment rates among autistic people, despite the strengths many bring to the workforce—such as attention to detail, strong focus [7], and advanced information processing skills. Currently, around three in 10 autistic working-age adults are in employment, compared to eight in 10 non-disabled adults, even though the majority of autistic people who are not employed say they would like to work (77 per cent of unemployed autistic people expressed a desire to work [8]).
Experts with lived experience have also pointed to the limited variety of education and employment pathways available, with opportunities often concentrated in a few sectors such as administration or hospitality. Additionally, assumptions about the capabilities of autistic individuals—whether underestimating those with higher support needs or overlooking the non-academic needs of highly capable individuals—can further restrict options.
As one parent carer explained:
Timeframes are negative because of how we process. When I say I have difficulty processing, it is not because I’m stupid—it’s because I’ve got 60 million tabs open. People misinterpret this—there is a lack of understanding.”
The national strategy for autistic children, young people and adults: 2021 to 2026 (2021–2026) outlines the Government’s efforts to improve access to education and employment. In education, this includes strengthening early support, promoting greater inclusion, and improving autism awareness among educators. In employment, the strategy focuses on increasing employer understanding, enhancing the accessibility of employment programmes, and ensuring Jobcentres provide more autism-inclusive support.
Health and mental health difficulties
Some health services, including mental health services, have different age criteria for moving from children’s to adult services, with some services having no directly related pathway into an adults’ service. Similarly, Child and Adolescent Mental Health Services (CAMHS ) can have separate pathways for neurodiversity and mental health, which both parent carers and experts by experience reported do not always effectively join up or proactively share information with each other, leading to missed opportunities for earlier support. This is compounded by feedback that in some areas young people can only be on one of these pathways, not both.
In addition to this, experts by experience told us that there are differences in culture between CAMHS and Community Mental Health Teams (CMHT), which can feel like a barrier within itself. For example, in one area CAMHS were described as taking a person-centred and holistic approach, whereas the CMHT were seen to focus on specific issues and required young people to be very proactive in their engagement with the service.
Parent carers and experts by experience also told us that there can be an overemphasis on total independence as soon as a young person turns 18, creating a level of expectation that can be challenging for any young person to meet. At the same time as this shift in expectations, many of the familiar people and often most of the support provided to young people is removed, creating the perfect storm of unmet support needs, social isolation, and lack of awareness or reasonable adjustments from services.
As a result, autistic young people may respond by suppressing their emotions, needs, preferences, instincts and coping mechanisms by varying degrees, in order to try to fit in. This can lead to a range of challenges, particularly for their mental health, for example:
- distressed behaviour, including meltdowns and/or shutdowns (often only expressed when it can’t be held in any longer or when the individual feels safe enough in their environment to do so, such as when they get home)
- mental and physical exhaustion (which can lead to autistic burnout)
- mental health difficulties (including increased risk of suicidal ideation or suicide and /or self-harm)
- a loss of sense of self and low self-esteem.
One practitioner attending explained that the difference in support from children’s and adults' services during transitions leads to a risk that when children reach the time to move onto adults’ services, the progress that they had made gets “blown wide open.”
It is important that autistic young people are supported to recognise what their emotional baseline is and feels like so they can identify when they may need to ask for help with their mental health. For many young people, this includes by practitioners encouraging young people to have curious and proactive conversations with them about their mental health, such as exploring how they notice when their mental health changes, what a “good day” looks like for them, and what they or others can do when they might be experiencing difficulties with their mental health.
Good practice principles – Ways to overcome the barriers to successful move on
Examples of good practice within councils
A number of councils and local areas have put considerable resource, effort and thought into their model of transitions for children and young people, which often encapsulate all or some of the guidance set out in this document. Some examples of this are:
- Enfield Council – Enfield Council have a Transitional Mentoring and Advocacy Service that supports young people aged between 17 years and nine months to 25 years old. This includes disabled children and young people and children and young people with special educational needs, as well as children who do not have special educational needs or disabilities, who have either received some support as a child from Children’s Services, or having reached 18, are known to Adults’ Services, but do not qualify for support under the Care Act (2014). The service is based around early intervention and involves matching each young person to a mentor who supports them using person-centred, strength-based practice. As a result of this service, improvements have been evidenced across health, relationships and community, housing, employment and money management. Outside of this service, as part of the Local Offer, Enfield host a series of annual preparing for adulthood events, which they recommend parent carers begin attending when their child reaches year 9. Some schools in the Borough also host a transition coffee morning at the start of the academic year.
- Derby Council – Derby Council’s Transition 2 project supports young people to overcome barriers to employment, education and independent living as they prepare for adulthood. Through strong relationships with local businesses and employers, the project creates opportunities for employers to become more inclusive and for young people to access meaningful work experience. The project also supports the development of skills for independent living. At the heart of this project are the principles of co-production, person-centred planning and providing young people with real-world experience.
- Hammersmith & Fulham Council – Through a service review, Hammersmith & Fulham listened to the views and experiences of children, young people and families in relation to their transition from children’s to adults’ services. From this, clear areas for development were identified and a member-led taskforce was created to co-produce and redesign the services that the council used to support young people through transition. Amongst other benefits, this resulted in the team adopting a person-centred approach, improved support to access education and work, and ensuring that each young person had a named allocated social worker as their case manager.
- Stockport Council – Stockport worked with a range of partners, including parents and carers, to develop a new transition pathway to identify young people who are likely to be eligible for support for adult social care. This led to an increase in the numbers of young people who had a timely transition to adult social care, reduced the numbers of young people referred in crisis, provided evidence for a business case for more resources, and enabled Stockport to embed a new way of working which supports effective transition planning.
- Plymouth City Council – Using funding from the Department for Education’s Short Breaks Innovation Fund, Plymouth City Council created the ‘4 Me and My Friends’ project, which supports disabled children and young people and children and young people with special educational needs to prepare for adulthood by helping them to access further education or meaningful employment.
- Wakefield Council - Using funding from the Department for Education’s Short Breaks Innovation Fund, Wakefield created a transition group for disabled children and young people and children and young people with special educational needs who need additional support with developing skills to help pursue their aspirations for adulthood.
- Royal United Hospitals Bath – The Royal United Hospital was one of the first hospitals to begin the Project SEARCH supported internship programme. This project is designed to support young adults with an EHCP or equivalent who have a learning disability and/or autistic young adults to secure meaningful permanent employment. In the UK alone, Project SEARCH now has over 200 partner sites in both the public and private sector.
- Gateshead Integrated Care Board – Gateshead worked to significantly increase the uptake and impact of annual health checks for all young people aged 14 and older with a learning disability. This has been achieved through a combination of proactive work to spread good practice across primary care settings, providing information and training to parents/carers, education settings, and local authority SEND teams, and developing simple, practical resources to improve take-up of annual health checks. Locally, this has been a crucial way of improving identification of need, transition to adulthood, and long-term health outcomes for people with learning disabilities. Although this resource applies to those with learning disability, the same approach could be taken towards supporting young people aged 14 and over with autism through annual health checks if these are adopted.