Facilitators

Facilitators to accessing mental healthcare

Facilitators are approaches that promote access and effective and appropriate mental health interventions. There are several NHS guidelines around improving the outcomes and experiences of autistic adults in mental health services. Some of these principles may apply for autistic people of all ages, as well as having wider benefits for people with ADHD and other neurodevelopmental conditions.

Some people who are autistic or have ADHD may not be aware of their condition/s, may not have (or be on the waiting list to receive) an NHS diagnosis, or may not feel comfortable sharing their diagnosis with healthcare professionals (Turnock, Langley and Jones, 2022). It is therefore important that approaches to improving care are not solely focused on people who have a clinical autism and/or ADHD diagnosis.

Guidelines

Recent reviews have identified strategies implemented within mental health services to improve mental health care for autistic children and young people (Pemovska et al., 2024), and adults (Loizou et al., 2023). These reviews highlight that, whilst there are gaps in evidence around effectiveness, greater knowledge of autism among healthcare professionals, providing adjustments, and some cognitive behavioural therapy (CBT) based interventions seem acceptable approaches to improving mental healthcare for autistic people.

Guidance for integrated care systems

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. These principles apply across all levels of mental health care, from support in the community, to planned mental health care, crisis care and inpatient services:

  • Ensure all services are accessible and acceptable to autistic adults: engagement and co-production of mental health services; reasonable adjustments
  • Support access to meaningful activity: healthcare professionals should support autistic adults to regularly engage in meaningful activities, including education, employment and leisure activities
  • Facilitate timely access to autism assessment, when clinically indicated: timely access to autism assessment may allow healthcare professionals to better meet autistic adults’ mental health needs. Diagnostic overshadowing is an important related issue.
  • Use evidence to guide intervention choice: NHS care for autistic people should always be based on the best possible evidence, including the careful prescription of medication and evidence-based non-pharmaceutical interventions.
  • Assess and proportionately manage risk: careful consideration of risk formulation for autistic adults, balancing proactive risk-taking with recognising that autistic people are at a higher risk of suicide and self-injury.
  • Monitor and minimise the use of restrictive practices: ICBs should identify and reduce the level of restrictive practices used within community and inpatient services, including providing choices about treatment for autistic adults, avoiding overreliance on crisis intervention, effective transition planning and addressing high levels of seclusion and long-term segregation experienced by autistic adults.
  • Support cohesive transitions: supporting both diagnosed and undiagnosed autistic people over periods of transition, including transitions between services and life transitions.
  • Consider the physical health needs of people accessing mental health services: healthcare professionals should be aware of link between physical and mental health in autistic people.
  • Create a local commissioning strategy, informed by statistical data: ICBs should anticipate the likely growth in the number of people diagnosed as autistic and how many autistic people are likely to access mental health interventions.
  • Develop and maintain a well-trained workforce: develop and maintain the workforce needed to deliver high-quality care for all autistic people, such as by rolling out Oliver McGowan training and expanding the workforce.

There are also joint guiding principles for integrated care systems – learning disability and autism (2023), which set out how organisations can work to improve the lives and outcomes of autistic people and people with a learning disability.

Guidance for commissioners

There is a range of guidance around commissioning for autistic people.

NICE guidelines

There are NICE guidelines and quality standards for both autism and ADHD:

Evidence-based interventions

The Royal College of Psychiatrists has produced guidance around the management of autism in adults, the key points from which are summarised below:

  • ‘Therapies applied without awareness of the autism can be harmful or, at the least, ineffective’ and that therapists may need to make adjustments for autistic traits, such as using straightforward language and addressing sensory needs.
  • Trauma-informed care is particularly important for supporting autistic people, as experiences of bullying and abuse are relatively common in autistic populations.
  • Some autistic people can have increased or decreased sensitivity to psychotropic medications and may be more likely to experience adverse side effects.

Although there is limited research into mental health interventions specifically looking at the outcomes for autistic adults, and this research has rarely considered which interventions are acceptable to autistic people, some studies suggest that cognitive behavioural therapy (CBT) and mindfulness therapy may decrease symptoms of depression and anxiety in autistic populations (Linden et al., 2023). However, international research suggests that clinicians may be less likely to start cognitive behavioural therapy (CBT) with autistic patients as treatment for depression or anxiety, compared to non-autistic patients; and feel less confidence about its impact (Maddox et al., 2019).

Royal College of Psychiatrists guidance around ADHD in adults states that:

  • All staff in community mental health services should be aware of ‘core features of ADHD and the potential for a missed primary or comorbid diagnosis’.
  • Treatment should ‘include psychosocial interventions and be trauma informed’, which is particularly important as people with ADHD are ‘often bullied, feel they don’t fit in, struggle academically and socially’.
  • Flexible approaches may help to improve healthcare access for adults with ADHD, such as appointment reminders.

There is limited research into psychological interventions to improve the mental health of people with ADHD (Fullen et al., 2020). However, a lack of research into the effectiveness of some mental health interventions in people with ADHD or autistic populations is not evidence that these interventions are ineffective (Royal College of Psychiatrists, 2020a).

STOMP – STAMP

There is ongoing work nationally to improve the lives of autistic adults and children who are prescribed psychotropic medication, as part of Stopping Over Medication of People with a learning disability, autism or both (STOMP) and Supporting Treatment and Appropriate Medication in Paediatrics (STAMP).

Reasonable adjustments

  • People who have an ‘impairment that has a substantial and long-term adverse effect on your ability to do normal day-to-day activities’ are considered disabled under the 2010 Equality Act and are entitled to ask for reasonable adjustments in public services, housing, education, work and healthcare services. This can include autistic people, people with ADHD and people with other neurodevelopmental conditions; including those who have not received a formal medical diagnosis (Citizens Advice, 2019).
  • Studies involving autistic people highlight that access to adjustments is important in mental health services and that having a clinician who understands autism is the most important adjustment (Brice et al., 2021).
  • Some autistic people report being unable to complete a course psychological therapy or missing healthcare appointments due to a lack of adjustments (Brice et al., 2021). Research also suggests that services may also discharge autistic people early due to perceptions that they ‘fail to respond’ to treatment, where adjustments have not been provided (Brede et al., 2022).
  • A ‘one size fits all’ approach to reasonable adjustments is unlikely to work as autistic and people with ADHD have a wide range of communication abilities, sensory sensitivities and co-occurring health conditions (Mason et al., 2019). These may need to be considered alongside other needs (e.g. language barriers, culturally sensitive care).

Sharing adjustments

There are two main ways of recording reasonable adjustments within the NHS, which can be used together:

  • Health and care passports are a resource that contains information about the needs of patients, to support health and care staff to provide effective care. Each patient with a health and care passport should choose what they want to include, and who the passport should be shared with; and health and care staff should use the passport when providing support for individuals.
  • The Reasonable Adjustment Flag was added to the NHS Spine in 2019, which allows professionals to record and view reasonable adjustments across different NHS services, where patient consent is given. The flag can adjustments around communications support, contact measures and adjustments to the environment, as well as any individualised reasonable adjustments. This is mandated for use in all care settings in England, as part of the NHS Long Term Plan; and must be fully implemented by the end of 2025. As of June 2024, this has not yet been rolled out in CPFT.

SPACE framework

The SPACE framework sets out 8 types of adjustments that may be useful for autistic patients: Sensory needs, Predictability, Acceptance, Communication and Empathy; as well as physical, processing and emotional space (Doherty, McCowan and Shaw, 2023). This framework was developed by a group of autistic doctors.

Figure 35: The autistic SPACE framework. Image source: Doherty et al. 2023

Examples of adjustments suggested in the SPACE framework are listed below:

  • Sensory: Option to have dimmed or natural lighting; avoiding highly stimulating décor (e.g. pinboard with lots of notices)
  • Predictability:  Providing information in advance about the physical environment (e.g. photos on website); written agenda of therapy session
  • Acceptance: Understanding of autistic stimming and thinking patterns; facilitating the need for factual information
  • Communication: Using of clear and direct language; knowing that communication ability is reduced by anxiety and sensory stress
  • Empathy: Recognising that autistic people feel empathy but may display it differently; relating to an individual’s interests
  • Space: Physical: Avoiding casual touch; allowing for a need for increased personal space
  • Space: Processing: Allowing for increased time to respond to questions; allowing for increased time for decision making
  • Space: Emotional: Accepting differences in emotional expression

Information and communication

  • The Accessible Information Standard addresses people’s information needs. This was developed by NHS England and defines a specific approach to meeting the information and communication needs of people using NHS and adult social care services, where these needs relate to a disability, impairment or sensory loss (including people who are d/Deaf, blind or deafblind). It may also be relevant to people who are autistic or whose mental health conditions impacts their ability to communicate.
  • One study involving autistic adults found that written communication such as email and text messaging was the preferred way of accessing services, as this provides structure, allows for more thinking time and reduces sensory issues and anxiety (Howard and Sedgewick, 2021). In this study, many autistic people reported that making and receiving phone calls is their least preferred type of communication.
  • The National Autistic Society has an accessible information guide and an autism-friendly checklist for services.

Physical environment

Sensory differences are common amongst people with ADHD and autistic people, with an estimated 70% to 90% of autistic people having sensory sensitivities (Ghanizadeh, 2011; NHS England, 2023e). This can include hyper-sensitivity (over-reactivity to sensory input), hyposensitivity (under-reactivity to sensory input) and sensory seeking (unusual interest in aspects of the sensory environment). To meet this wide range of needs, it has been suggested that services ‘focus on ensuring access to a range of environments’ and providing information to allow people to make informed decisions (Autistica, 2019a).

The NHS states that environments that do not have adaptations for autistic people’s sensory needs can ‘impede the effectiveness, or hamper the delivery of, therapeutic intervention, exacerbate poor mental health and lead to the use of restrictive practices such as restraint, seclusion or segregation’ (NHS England, 2023e). NICE guidelines recommend that healthcare professionals should consider making adaptations to the physical environment, such as considering the lighting and noise levels, to provide effective care for autistic adults (NICE, 2022).

Psychotherapeutic interventions

There are a range of evidence-based adaptations to psychotherapeutic interventions for autistic people (Lai, 2023). These are summarised in the diagram below, which lists general principles (on the left), and approaches to adjustments (middle) which can be used to address barriers associated with autistic cognitive features (right). For example, around half of autistic people have difficulties identifying their emotions (alexithymia) (Kinnaird, Stewart and Tchanturia, 2019). As a result, it may be useful for clinicians to focus on emotional awareness with some autistic patients.

Figure 36: Principles of adapted psychotherapeutic interventions for autistic people. Image source: Lai 2023

Autism Toolkit

The Autism Toolkit was created as part of the Cambridgeshire and Peterborough All-age Autism Strategy. It is a self-assessment tool which encourages and supports organisations to become more accessible and includes 5 standards around:

  1. Environment: ensuring that the physical environment is accessible to children, young people and adults with autism. This includes adjustments that can be made to virtual environments.
  2. Training: ensuring that providers of public services follow the ‘Statutory guidance for Local Authorities and NHS organisations to support implementation of the Autism Strategy to help improve the delivery of the services’
  3. Communication Methods: ensuring that providers/organisations are aware and understand how to communicate with service users and should ensure accessible formats are available. This includes an acknowledgement that behaviour is a form of communication.
  4. Integration of Services: ensuring service providers/organisations have an understanding of the wider service offer, fostering relationships between internal and external providers/services
  5. Communications/Marketing: ensuring all services available for those with an autism diagnosis are appropriately communicated, using a variety of platforms and accessible channels

Workforce

NHS guidelines state that all statutory bodies within ICBs should develop and maintain their workforce to provide high-quality mental health interventions for autistic adults. This includes developing autism knowledge of the whole workforce through Oliver McGowan training; upskilling, expanding and retaining the workforce that cares for autistic people; and workforce planning and transformation (NHS England, 2023c). Literature highlights the importance of recognising that organisational factors, such as waiting lists and referral pathways, contribute impact clinicians’ ability to provide effective care for autistic people (Coughlan et al., 2020).

There is currently no NHS guidance around developing the workforce to support people with ADHD.

Training

NICE guidelines state that ‘all health and social care professionals providing care and support for autistic adults should have a broad understanding of the nature, development and course of autism’ (NICE, 2022). The Health and Care Act 2022 included a statutory requirement that regulated service providers ensure staff receive training around autism and learning disability, that is suitable for the requirements of their role (NHS England, 2024b). The Oliver McGowan Mandatory Training was developed for this purpose.

  • Tier 1 of the Oliver McGowan training is an e-learning course for people who require general awareness around autism and learning disabilities (including staff in non-public facing roles). This is compulsory for all CPFT staff. Tier 1 also includes an hour-long webinar with opportunities to meet and talk to a learning disabled and an autistic lived experience expert.
  • Tier 2 of the Oliver McGowan Training is a 1 day of face-to-face training delivered by trainers and experts with lived experience. In Cambridgeshire and Peterborough, a network of community organisations with considerable experience of working with autistic and learning disabled people is delivering the training that has been jointly developed and co-produced by Mencap and the National Autistic Society. The Cambridgeshire and Peterborough network includes the following training organisations:

Examples of training include:

A recent review identified several approaches to training mental health staff to provide better care to autistic people, (Pemovska et al., 2024). Although before- and after- comparisons showed significant improvements in staff knowledge after training, findings were limited by limited by small sample sizes and a lack of comparison groups.

Understanding of autism and ADHD among healthcare professionals

  • A recent review found that primary care clinicians can lack of training or confidence around ADHD, and that this can be a barrier to the recognition of ADHD within primary care (French, Sayal and Daley, 2019).
  • National surveys suggest that many psychiatrists are knowledgeable about autism and have received some training on autism (Crane, Davidson, et al., 2019). However, a national survey carried out in 2017 found that 40% of GPs had never received formal training about autism, and that whilst many had a good knowledge of the key features of autism, most did not feel confident in identifying and supporting autistic patients (Unigwe et al., 2017).
  • Another national survey, carried out in 2019, found that autistic people and their families felt that most professionals do not have a good understanding of autism, although mental health professionals scored most highly in terms of perceived understanding of autism (APPGA, 2019).

Figure 37: Professional understanding of autism, as reported by autistic people and their families. Image source: The Autism Act, 10 Years On

Examples in local services

Support for autistic people and people with ADHD within CAMEO

CAMEO (Cambridgeshire and Peterborough Assessing, Managing and Enhancing Outcomes) provides support for people aged between 14 and 65 who are experiencing their first episode of psychosis or those at risk of developing psychosis. This service provides a specialist offer of support for autistic people and people with ADHD, including the provision of autism/ADHD diagnostic assessments within CAMEO, adjustments to how interventions are delivered and awareness across all staff of how autism or ADHD traits may impact how psychosis presents.

In 2019, 3 staff members were trained to deliver autism and ADHD diagnostic assessments, and ADHD treatment, within CAMEO. These staff have shared their learning across their teams, leading to a culture shift in which, when people are referred to CAMEO, staff consider ‘could autism and/or ADHD help explain this?’. Different approaches have been introduced to tailor support to autistic patients, who make up 13% of the CAMEO caseload (Treise et al., 2021). Depending on the individual, this may include:

  • A focus on stressors present alongside psychosis symptoms (e.g. sensory or interpersonal issues)
  • Practical interventions to target stressors and improve functioning (e.g. considering adaptations in the workplace, structured social groups to help people build social networks)
  • Using a different approach to CBT for people with ‘black and white’ thinking.
  • Supporting people with alexithymia to improve their introspection.

This new protocol was introduced in recognition that there was a substantial proportion of people within CAMEO who had a different clinical presentation and for whom the typical interventions did not meet their needs – such as people whose symptoms did not improve after receiving cognitive behavioural therapy (CBT), or who had unusual reactions to medication (Treise et al., 2021).

Additional resources

References

The references for this section can be accessed here.

Previous page
Next page