Mental health services

Both autistic people (Brede et al., 2022) and healthcare professionals (Crane, Davidson, et al., 2019) raise that autistic people with mental health conditions can find it difficult to access support from both mental health services and autism-specific services.
- A national survey carried out in 2019 found that 76% of autistic adults had reached out for mental health support in the preceding 5 years, and that only 14% of autistic adults felt there were enough mental health services in their area to meet their needs (APPGA, 2019).
Although evidence suggests that people with ADHD are overrepresented in mental health services, there is limited research into the access and outcomes of people with ADHD within mental health services.

The sections below detail what we know about the mental health support for autistic people and people with ADHD across different age groups, recognising that the needs of these groups may change over people’s lifetimes.

Assessment, diagnosis and management

There are increasing numbers of children and adults referred for ADHD and autism assessments in Cambridgeshire and Peterborough, which has not been matched by an increase in service capacity.
A range of factors may have contributed to this increase in demand, including changes in diagnostic criteria for autism and ADHD, greater awareness of these conditions and how they present in girls and women, and greater awareness of ADHD treatment.
Waiting times to access ADHD and autism assessments has been repeatedly raised as an important issue by people in Cambridgeshire and Peterborough (Sidney, 2023, 2024).

Autism assessment and diagnosis

There is increasing demand for autism assessments across England, which has not been matched by an increase in capacity. As a result, many people wait ‘much longer than the 3-month recommended in NICE guidelines for an autism assessment to begin and the 18-week maximum waiting time for treatment to begin’ (NHS England, 2023a).
Likewise, there is a ‘substantial mismatch in supply and demand of number of [autism] diagnostic assessments commissioned’ in Cambridgeshire and Peterborough (Public Health Team CCC & PCC, 2020).
The NHS introduced a new framework for diagnostic assessment pathways for autism in 2024 (NHS England, 2024a). This framework aims to address long waiting times, improve the quality of information and support provided during and after assessment, and to improve the ease and efficiency of progression through the autism pathway.

Increasing numbers seeking assessments

There was a 787% increase in incidence of autism diagnoses in the UK from 1998 to 2018, which a particular increase in diagnoses in adults, and women and girls (Russell et al., 2022). Changes in the diagnostic criteria for autism and a growing awareness of the different ways autism can present (particularly in women and girls) may have contributed to this increase (Brede et al., 2022).

Figure 23: Percentage increase in new autism diagnoses, UK, 1998 – 2018. Image source: Russell et al. 2021 Note: this graph uses the number of new diagnoses in 1998 as the baseline (100%)

It is estimated that 0.82% of people in England have a formal autism diagnosis. A further 0.77% – 2.22% (between 435,700 and 1,197,300 people) may also be autistic but had not received a diagnosis as of 2018 (O’Nions et al., 2023). Many people with undiagnosed autism are adults, a high proportion of whom are aged 50+.

Impact on diagnosis on mental health

NHS guidelines on autism assessments set out four key reasons why ‘universal, equitable and timely access’ to autism assessments are important (NHS England, 2023a):

Healthcare: diagnosis can allow people to access specialist support services (e.g. safe and effective interventions to improve communication or wellbeing).
Reasonable adjustments: diagnosis can inform clinical decisions about which interventions are best for individuals (NHS England, 2023d). For example, some mental health interventions are less effective for autistic people (Li et al., 2022).
Validation and self-identity: receiving an autism diagnosis as an adult can mean different things to different people. It can be an empowering experience that can help autistic adults to accept themselves and understand difficulties they have faced throughout their lives (Lai and Baron-Cohen, 2015). People who receive external support and autism acceptance are more likely to develop a positive ‘autistic identity’, which is associated with higher wellbeing and lower rates of internalised self-stigma, psychological distress and depression (Davies et al., 2024).
Wider determinants of health: access to an autism diagnosis may allow opportunities to better meet mental health needs and reduce risk factors for poor mental health, such as adjustments in employment.

Undiagnosed autism is associated with poorer mental health, including 2.7 times greater likelihood of lifetime mental illness (Jadav and Bal, 2022; French et al., 2023). Autistic people who do not have a clinical diagnosis may be unable to access appropriate mental healthcare, improved personal understanding, workplace adjustments and protection from discrimination (NHS England, 2023a). Hence, timely access can potentially reduce the escalation of poor mental health and the need for inpatient mental health admissions (NHS England, 2023c).

A recent report highlights that failing to provide autistic children with the support can have a long-term impact on their outcomes, including physical and mental health outcomes, and greater risk of school exclusion (Longfield, 2024).

Autism assessment pathway

National guidance outlines 5 stages in autism assessment pathways:

Identification of possible autistic traits and referral to relevant service
Screening and triage
Pre-assessment support
Autism assessment
Post-assessment support

Figure 24: Generic autism assessment pathway. Image source: Operational guidance to deliver improved outcomes in all-age autism assessment pathways: Guidance for integrated care boards

ADHD assessment, diagnosis and management

Both people with ADHD and healthcare professionals have raised multiple challenges relating to ADHD diagnostic pathways and treatment, including recent issues in the supply of ADHD medication (Russell, Hinwood and Fuller, 2024).

In England, the increased demand for ADHD assessments in recent years has not been matched by increased workforce and funding for assessment services. This has led to ‘unprecedented’ waiting times to access ADHD assessments and treatments, for which there are currently no national targets to address (M. Smith, 2023; Smith et al., 2023).
More recent understanding of ADHD as a lifelong condition, rather than something that only occurs in childhood, has led to greater recognition of the needs of adults with ADHD (Adamou, no date).
Some groups of people with ADHD are more likely to face inequalities in terms of access, experience and outcomes of ADHD services, including people in contact with the criminal justice system and people living in more deprived areas (Russell, Hinwood and Fuller, 2024).

Increasing numbers seeking assessments

As shown in the graph below, increasing numbers of people have been assessed for and diagnosed with ADHD over the past 20 years. Between 2000 and 2018, there was a 20-times increase in the ADHD diagnoses in men aged 18 – 29 in the UK (McKechnie et al., 2023). A range of factors may have contributed to this increase, including greater awareness of ADHD and treatments, and changing attitudes around ADHD (McKechnie et al., 2023). There are also some reports that the wider impacts of the COVID-19 pandemic, such as lockdown requirements, heightened core ADHD traits in some people (Hollingdale, Adamo and Tierney, 2021).

Figure 11: Time trends of new ADHD diagnoses in children and adults in the UK, by age group and gender. Note the different y-axes. Image source: McKechnie, et al. 2023

This study also found that whilst the male-to-female ratio of ADHD diagnoses was around 4:1 in childhood, there were similar rates of diagnosis in adults over 50. This may reflect that women are more likely to be diagnosed with ADHD later in life, potentially because ADHD can be under-recognised in girls (McKechnie et al., 2023). Some people with ADHD report that perimenopause and the menopause is a period when ADHD has the greatest impact on their day-to-day life (Wasserstein, Stefanatos and Solanto, 2023). However, there is a lack of research into this relationship (Camara, Padoin and Bolea, 2022).

Impact of diagnosis on mental health

A systematic review shows that receiving a diagnosis of ADHD can allow people to better understand their needs, and access support and interventions (French et al., 2023). Medication used to manage ADHD traits has been shown to substantially improve outcomes.
French et al.’s 2023 review showed that undiagnosed ADHD can have substantial impacts of people’s day-to-day life and was associated with lower quality of life and social difficulties; higher rates of depression, anxiety and substance use; poorer outcomes in education and employment; poorer physical health and higher rates of offending (French et al., 2023).
Some research suggests that the early management of ADHD symptoms may reduce the risk of people developing depression and bipolar disorder, as well as being associated with a 50% decrease in the risk developing ‘substance use disorders’ (Katzman et al., 2017).
Some research suggests that the use of medication to manage ADHD traits is associated with a reduction in offending (Lichtenstein et al., 2012).

Alternative models and pathways

Some areas have introduced alternative models and pathways for both ADHD and autism assessments, including placing these services outside of mental health trusts. One alternative model is a needs-led approach, which focuses on addressing immediate needs before necessarily providing a clinical diagnosis. Another approach is integrated pathways for people requiring assessments of multiple neurodevelopmental conditions.

Needs-led services focus on early identification and providing faster support without relying on a diagnosis (Longfield, 2024). This is in contrast with the current model, in which people often have to have an assessment and clinical diagnosis before being able to access some types of support (e.g. in education). It has been suggested that this type of model may particularly benefit children and young people with sub-threshold ADHD symptoms (Kazda et al., 2024). One example of this approach has been designed in Portsmouth, where a Neurodiversity Team was developed:

Families and professionals worked together to create a neurodiversity profiling tool, which can be used by a range of professional to identify strengths, skills and ‘areas of challenge’ which can be supported without a need for a clinical diagnosis.
As well as this ‘single point of contact’, there is also an ‘extended offer’ of support for children and young people with more complex needs. This may include assessments, diagnosis and focused support.
This approach has led to a substantial reduction in the demand for diagnostic services. However, as it was recently introduced, there is currently no data on the long-term outcomes of this approach.

An integrated neurodevelopmental pathway would combine assessment and support for ADHD, autism and other neurodevelopmental conditions (Male et al., 2023). This approach may help to address pathways people with multiple neurodevelopmental conditions currently navigate (Embracing Complexity, 2019; Male, Farr and Reddy, 2020). It also recognises that it is common for people to have multiple conditions: for example, one study found that 2 in 3 autistic children had traits of other neurodevelopmental conditions (Lang et al., 2024). One example of this is the Peterborough Integrated Neurodevelopmental Service.

Survey of local professionals

As part of this chapter of the mental health needs assessment, we carried out a survey of local services providing mental health support, to better understand the strengths and gaps in how mental health services provide support to autistic people and people with ADHD. This survey was sent out widely in June 2024, to staff in CPFT as well as hospitals and voluntary and community sector (VSC) organisations. This webpage gives a summary of findings, but you can also read the full results.

How was this survey developed?

This survey is based on the Green Light Toolkit, which was commissioned by NHS England in 2022. This toolkit was created by the National Development Team for Inclusion, who worked with autistic people and NHS staff to develop the questions. We added questions around ADHD and have included ADHD in some questions to this toolkit, as we recognise that people with ADHD may face specific barriers to accessing mental healthcare. We also acknowledge that many people have both autism and ADHD, and that autism and ADHD can share overlapping traits that may impact how people interact with and experience mental health services (e.g. sensory differences).

Who completed this survey?

The survey had 70 responses from staff in a range of services, although most worked in either CPFT mental health services (43%) or VSC organisations (24%).

Key findings: service provision

The survey asked 33 questions on service provision, each of which had 4 options. Each question was given a score between 0 and 100, where 100 indicates the best response. This gives a sense of the spread of different answers, as it was calculated from the mean score (where option 1 gave a score of 0 and option 4 gave a score of 100). Based on this scoring, the areas which rated highest in terms of provision for autistic people and people with ADHD were:

Safeguarding – autism
Safeguarding – ADHD
Staff attitudes – autism
Thriving – ADHD
Thriving – autism

The areas which rated lowest in terms of provision for autistic people and people with ADHD were:

Adjustments to buildings and environment
Support for family and friends – autism
Working together – ADHD
Support for family and friends – ADHD
Working together – autism

Key findings: comments

Survey respondents had an option to leave a comment, which included:

Several services reported that they had ‘specialists’ in autism and ADHD (such as staff who had completed additional training, had done research in their own time or who are neurodivergent themselves), but that not all staff shared this level of expertise. This could lead to support being ‘hit and miss’.
Many people felt they would benefit from more training around autism and ADHD, including low cost or free training for VSC organisations.
A lack of data collection/recording could mean it was difficult to understand what was happening (for example, if current co-production work involves people with ADHD, or if autistic people are more likely to experience safeguarding concerns).
The question around the built environment was not relevant for services who deliver support online.
Some people highlighted a need for specialist support for patients with both autism and ADHD.

Respondents working with children and young people could also leave specific reflections about working with this age group. Some people felt that:

Mental health provision for children and young people can be ‘too rigid’, for example a lack of adjustments in therapies which meant that children were unable to engage, or a lack of parenting courses providing tailored information for parents of neurodivergent children.
There is a need for a new ‘early intervention’ service to support children and young people presenting with neurodiversity, which could include skills training for professionals.
Social issues are key when supporting young people (e.g. school avoidance, learning to be social).

Key findings: training

There was a mixed picture as to the training of staff: 38% of respondents reported having completed Oliver McGowan training, but not any additional training around autism of ADHD; whilst 34% had completed further training around both autism and ADHD. Note that, at the time of this survey, Cambridgeshire and Peterborough ICS had not implemented the roll out of Tier 2 of Oliver McGowan mandatory training. These results therefore only relate to Tier 1 Oliver McGowan Training.

Mental health interventions

Both autistic people (Brede et al., 2022) and healthcare professionals (Crane, Davidson, et al., 2019) raise that autistic people with mental health conditions can find it difficult to access support from both mental health services and autism-specific services. A national survey carried out in 2019 found that 76% of autistic adults had reached out for mental health support in the preceding 5 years, and that only 14% of autistic adults felt there were enough mental health services in their area to meet their needs (APPGA, 2019).
Although evidence suggests that people with ADHD are overrepresented in mental health services, there is limited research into the access and outcomes of people with ADHD within mental health services.

Perinatal period

Previous chapters of the mental health needs assessment highlight that the perinatal period (pregnancy, birth and the first two years of a child’s life) is a key period and that mental health conditions that occur during this time can have a particularly strong negative impact on parents and families. There is limited research into the mental health needs of parents with ADHD and autistic parents during the perinatal period.

One study found that autistic parents had higher rates of pre- and post-partum depression than non-autistic mothers and were more likely to feel misunderstood by healthcare professionals (Pohl et al., 2020). Another small study found that autistic women reported higher levels of depression and anxiety symptoms and greater stress during the perinatal period, compared to non-autistic women (Hampton et al., 2022).
There is little research into the mental health needs of parents with ADHD (Kittel-Schneider et al., 2021). One meta-analysis suggested that ADHD is associated with a greater risk of teenage pregnancy (Kittel-Schneider et al., 2021), which can be associated with poor mental health.

Children and young people

An earlier chapter of the mental health needs assessment explores the mental health needs of children and young people in Cambridgeshire and Peterborough across four stages in their lives: preschool, primary school, secondary school and entering adulthood.

There are substantial capacity issues in children and young people’s mental health services across England. Autistic children and children with ADHD face long waiting times for NHS support and diagnostic assessments, which can have a negative impact on their mental health and wider outcomes (J. Smith, 2023). In England:
- Children and young people referred to mental health services for the primary reason of ‘suspected autism’ face the longest wait to accessing services (median wait of over 7 months), followed by children with ‘other neurodevelopmental conditions’ (median wait of 3.5 months) (Children’s Commissioner, 2024).
- By service type, the longest waits are for ‘Autism Services’ (median wait of around 16 months) and ‘Neurodevelopment Teams’ (median wait of around 6.5 months) (Children’s Commissioner, 2024).
Autistic young people report feeling that their mental health problems result from the way autistic people are pressured to act in a neurotypical world. They state they face many barriers and delays to accessing mental health interventions, as well as facing stigma around both mental illnesses and autism; with one survey finding that 68% were not confidence that they could get appropriate support for their mental health needs (Crane, Adams, et al., 2019).
There is some evidence suggesting that autistic children and children with other neurodevelopmental conditions are more likely to be absent from school and experience ‘school distress’ (Connolly et al., 2022; Department for Education, 2022).

It is important to consider the needs of the families/carers of autistic children and children with ADHD, a proportion of whom may also be autistic and/or have ADHD. Parents/carers can experience stigma and stress, and have their own mental health needs, with research suggesting this correlates with the autistic person’s mental health (Lai, 2023).

Primary care

General practitioners play a key role in identifying autism, providing mental health interventions and referring autistic children and young people to other services (Coughlan et al., 2020). Literature suggests that parents/carers are likely to go to their family GP as a first point of contact with questions around their child’s development or behaviour, with this ‘pre-diagnostic period’ often being a stressful time for families (Coughlan et al., 2020).
Autistic children and young people are likely to present to general practice with more complex needs, including psychological and social issues, than their non-autistic peers (Foley et al., 2018). Similarly, one recent study found that children with ADHD were twice as likely to attend their GP as those without (Prasad et al., 2024).

Children and young people’s mental health services (CYMPHS)/YOUnited

Neurodevelopmental conditions were the third most common referral reason to children and young people’s mental health services in England in 2022-23 (Children’s Commissioner, 2024).
Similarly, in Cambridgeshire and Peterborough, support around autism and/or ADHD was one of the top 5 reasons people are referred to YOUnited in July 2023. This may be to access diagnostic assessments, ADHD medication, or to receive mental health interventions.

Crisis services

International research suggests that young autistic people and people with ADHD may be at higher risk of experiencing a mental health crisis:

One international study found that children with an autism diagnosis were 9 times more likely to attend Accident and Emergency due to their mental health, compared to children without an autism diagnosis (Kalb et al., 2012).
Another international study found that over 1 in 4 young people attending Accident and Emergency due to their mental health had a diagnosis of ADHD and/or autism (Bourke et al., 2021).

Inpatient

The NHS Long Term plan set a target that, by March 2023, the rate of children and young people with autism and/or a learning disability being cared for in an inpatient mental health unit would have decreased to half the rate in 2015 (to between 12 to 15 children, per one million children) (NHS, 2019).
Research involving autistic children and young people with experience of CAMHS inpatient services highlights that the sensory experiences of inpatient wards can be overwhelming and harmful for autistic people, can prevent them from being able to engage in interventions and can contribute to long hospital stays (NDTi, 2020).
Support which is specifically designed for autistic young people may help to improve outcomes in inpatient settings. For example, staff training and the use autism-specific interventions in one mental health unit was associated with a 40% decrease in length of hospital stay and 77% decrease in the use of holds and restraints (Kuriakose et al., 2018); with some of these outcomes being sustained in the 18 months after this pathway was introduced (Cervantes et al., 2019)

There is no national guidance specifically around the needs of young people with ADHD in inpatient mental health settings, and limited research about this group.

Working-age adults

The earlier chapter of the mental health needs assessment covers the mental health needs of working-age adults in Cambridgeshire and Peterborough.
Many autistic adults experience poor mental health and seek out mental healthcare, with one 2019 survey finding that over three quarters of autistic adults in England had reached out for mental health support in the preceding 5 years (APPGA, 2019).
National research suggests that adults with ADHD often ‘struggle to access appropriate healthcare’, due to a lack of provision of evidence-based treatment options and limited information about services (Price et al., 2020).

Older adults

There is limited research looking at the mental or physical health needs of autistic older adults or older adults with ADHD, despite health needs often increasing with age (Torgersen et al., 2016; Ward, 2019).

Some international studies suggest that older adults with ADHD are more likely to experience anxiety and depression than their peers, which may be linked to adverse life events (Torgersen et al., 2016). There is also some research suggesting that ADHD may be a risk factor for dementia (Becker et al., 2023).
Some have suggested that there may be a ‘silent crisis’ among autistic older adults, due to relatively high rates of depression and suicide, with limited support for people in this age group (Robison, 2019). One small study found a high prevalence of mental health conditions among older autistic adults (Bishop-Fitzpatrick and Rubenstein, 2019).

Additional resources

References

The references for this section can be accessed here.