Wider context

Autistic people and people with ADHD highlight that the importance of the language used to describe them (Kenny et al., 2016; AADPA, 2022). Each individual has a right to determine how they would like to be described.
There are several national and local strategies which are relevant to the mental health needs of autistic people and people with ADHD.

Definitions

Autistic people and people with ADHD highlight that the language used to describe them is important (Kenny et al., 2016; AADPA, 2022). This is reflected in national NHS guidance, which states that:

‘The terms used to communicate with, and about, autistic people can have a profound impact on people’s attitudes towards autistic people. Healthcare professionals should be mindful that the terms they use to refer to autism conveys powerful messages about their attitudes toward autistic people. Certain terminology is considered unacceptable by some autistic people and, if used, may result in some people lacking faith in a professional or disengaging from a service. Terminology should describe autism in diagnostic, but not in excessively negative or deficit-based ways, for example, autism should not be referred to as a disease or illness.’ (NHS England, 2023c)

In this chapter, we have used identity first language, describing to ‘autistic people’ rather than ‘people with autism’, as this is often preferred (Kenny et al., 2016) and is recommended by NHS England. Some people may also prefer to describe themselves as ADHD, being an ADHDer, or being an AuADHDer (being both autistic and ADHD). However, we recognise the right of individuals to determine how they would like to be described.

Autism

Autism ‘describes the way some people communicate and perceive the world around them’ (Autistica, 2024b). Although each autistic person is different, there are some behaviours associated with autism such as (Autistica, 2024b):

Communicating differently to non-autistic people (e.g. differences in eye contact)
Experiencing sensory differences (e.g. having decreased or increased sensitivity to sound and touch)
Having a strong preference for routine, sameness or certainty
Enjoying focused, more intense interests

Autism impacts people across their whole lives. However, the features of autism in individuals can change over time, from childhood to later adulthood, and in different contexts (Lord et al., 2022).

ADHD

ADHD (attention deficit hyperactivity disorder) is a condition characterised by regulating concentration and attention, restlessness and impulsive behaviour. Not everyone with ADHD has all of these traits: the NHS estimates that between 2 to 3 in 10 people with ADHD have problems with concentrating and focusing, but not with hyperactivity or impulsiveness (NHS, 2021). ADHD can be a lifelong condition (NHS, 2021), and although some people are diagnosed as children, others are diagnosed later in life.

Neurodiversity

Neurodiversity is the ‘natural variability within human brains and minds’ (Lord et al., 2022). This concept was developed by autistic activists and has been used to advocate for the rights of autistic people and people with ADHD, as well as those with other conditions such as Tourette’s syndrome, dyslexia and dyspraxia. Neurodiversity focuses on recognising the strengths of neurodivergent people, instead of medical models that are often based around deficits or impairments.

SEND

SEND (special educational needs and disabilities) are needs and disabilities that impact children or young people’s ability to learn. This can include ADHD, autism, dyslexia, dyspraxia and other conditions (UK Government, 2024). For example, a child with ADHD may find it difficult to regulate their concentration, which could impact their ability to learn in a standard classroom setting. Some children and young people with ADHD and/or autism are eligible for SEND support in school or an EHC (Education, Health and Care plan).

National policy

There are several national policies which are relevant to understanding the mental health needs of autistic people and people with ADHD. The Autism Act (2009) states that local authorities, the NHS and integrated care boards (ICBs) have a duty to provide relevant services for the identification, diagnosis, needs assessment and support of autistic adults. This Act states that there should be a national strategy for autistic children, young people and adults. The latest strategy (2021 – 2026) set out 6 key areas which would make significant impacts on autistic people’s lives:

improving understanding and acceptance of autism within society
improving autistic children and young people’s access to education, and supporting positive transitions into adulthood
supporting more autistic people into employment
tackling health and care inequalities for autistic people
building the right support in the community and supporting people in inpatient care
improving support within the criminal and youth justice systems

The NHS Long Term Plan (2019) set out to improve the health and wellbeing of autistic people by:

Tackling the causes of preventable deaths amongst autistic people, such as by piloting the introduction of a specific physical health check (which may include physical as well as mental health)
Improving the understanding of the needs of autistic people across the NHS, including through the introduction of a ‘digital flag’ that lets staff know when someone is autistic and making sure that all healthcare providers make reasonable adjustments
Reduce waiting times for autism assessment services
Reducing the numbers of autistic children, young people and adults in inpatient care
Increasing investment in intensive, crisis and forensic services

These strategies have been supplemented by a 5 year autism research strategy (2022 – 2027), which sets out actions for the NHS to provide better evidence-based healthcare for autistic people. In 2023, NHS England produced guidance for integrated care boards and wider system partners around meeting the needs of autistic adults in mental health services; and the national Suicide Prevention Strategy (2023 – 2028) was published, which included autistic people as a priority group that may require targeted support in suicide prevention approaches.

NHS England has recently announced the formation of an ADHD taskforce, to investigate ADHD service provision and the experiences of people with ADHD.

Local policy

The Cambridgeshire and Peterborough All-age Autism Needs Assessment (2020) (add link) estimated the number of autistic people in Cambridgeshire and Peterborough, described their health and education needs and mapped local service provision. This was used to inform the Cambridgeshire and Peterborough All-age Autism Strategy (2021 – 2026), which aims to ensure that Cambridgeshire and Peterborough is an ‘autism friendly place’ where autistic children and adults ‘can live full, healthy and rewarding lives, within a society that accepts and understands them’. This strategy set out 8 key priorities around:

Early intervention
Awareness raising and training
Employment and independence
Housing
Criminal justice system
Joint commissioning of services
Access to healthcare
Diagnostic pathways

An All-age Autism Strategy Implementation Programme was launched at the start of 2024 to undertake cross-cutting priority improvements that build on the ambitions laid out in the 2021 Strategy whilst also responding to the current context, with all actions designed and agreed through collaboration with stakeholders. Throughout spring 2024, work was undertaken to map current autism support and services and the information available to residents. Through widespread engagement with stakeholders from across the system, three priority areas were identified:

Waiting lists (and support whilst waiting)
Access to services
Navigating services

Through further engagement with system stakeholders, as well as national guidance and best practice, 15 key improvements across children and adult services have been identified to be further explored. For children and young people, these are:

Delivering clear local guidance on autism and ADHD assessments
Improving communication and signposting
Streamlining current neurodiversity pathways
Enhancing the holistic needs-led support offer
Enhancing support for staff working in early help and education
Implementing a tool to identify and support neurodiversity needs
Increasing joint working between services
Assessing opportunities to scale early identification and intervention initiatives

The key improvements for adults are:

Delivering clear local guidance on autism and ADHD assessments
Improving communication and signposting
Extending CLASS quality improvement work
Expanding needs-led peer-to-peer support
Increasing training and support for staff in mainstream services on neurodiversity and reasonable adjustments
Improving access to mental health support offer for autistic adults
Improving links/ joint-working between autism and ADHD support and services

In June 2024, work is currently underway to further develop the detail behind the adults key improvements. For the children and young people key improvements, options are being developed for a new neurodiversity model, which would:

build on existing good practice within the geography, including the important work of the VCSE sector and parent-carer forums.
draw on new research, innovations and best practice nationally from systems such as Portsmouth, Cornwall and Bedfordshire, Luton and Milton Keynes.
improve the provision of holistic, needs-led support for autistic / neurodiverse children and young people, and their families.
reflect the system’s ambition to better meet neurodiversity needs earlier, and the additional complexity of this age group, with more organisations involved in meeting their needs.

The Joint Cambridgeshire and Peterborough Suicide Prevention Strategy (2022 – 2025) highlights that autistic people may require a specific focus in suicide prevention, as autistic people are at a greater risk of dying by suicide and may face barriers in accessing mental healthcare.

Making SEND everybody’s business (2019 – 2024) is the local strategy for children and young people (aged 0 – 25) with special educational needs and disabilities (SEND). It states that considering and providing for the needs of children and young people with SEND should be ‘everybody’s business’.

There are no local strategies specifically focusing on ADHD.

Additional resources

References

The references for this section can be accessed here.