Barriers to accessing mental healthcare
- There is a higher prevalence of mental illness amongst autistic people than the general population, and the number of children and adults with an autism diagnosis is rising across England. This means that autistic people make up a ‘significant and fast-growing’ group of patients supported by mental health services (NHS England, 2023c).
- Barriers to accessing healthcare are associated with poorer health outcomes in autistic people (Doherty et al., 2022) and improving access to healthcare has been identified as priority in surveys involving autistic people (Brede et al., 2022).
- People with ADHD can face barriers to accessing mental healthcare (Kappi and Martel, 2022). Flexible approaches to service delivery, such as appointment reminders, may help to improve healthcare access for people with ADHD (The Royal College of Psychiatrists in Scotland, 2023).
Some barriers to accessing mental healthcare are common across a range of population groups (such as stigma around mental illness), whilst others may be specific to autistic people and people with ADHD. We recognise that people with different neurodevelopmental conditions can be at higher risk of experiencing mental health conditions (Sapiets, 2021), can share traits (such as sensory differences and difficulties with emotional regulation), and report that their mental health treatments do not take their neurodevelopmental condition/s into account (Autistica, 2019b). Improving the mental health system for people with ADHD and autistic people to have wider benefits for other neurodivergent people (Lord et al., 2022).
Autism
A review of international research highlights that mental health services do not always provide effective support for autistic adults and can in some cases cause harm. The barriers that autistic people can face to accessing mental healthcare can result in inappropriate use of medication, pressures in their relationships where families and friends are relied on for support, and distrust in mental health services. This review highlights ‘a need for a more flexible, comprehensive and holistic approach, considering how being autistic affects the individual’s mental health presentation and tailoring support to their needs’ (Brede et al., 2022).
This summary below is based on Brede et al.’s 2022 review. Many of these barriers can occur at any age, however some may change across the life-course, such as a specific lack of awareness of the health needs of older autistic adults (Malik-Soni et al., 2022). Some of the barriers listed below may stem from a lack of commissioned services, or siloed commissioning. For example, psychiatrists in the UK raise that long waiting lists, under resourced services, a lack of post-diagnostic support, and poor cross-system working leads to fragmented care for autistic people (Crane, Davidson, et al., 2019). Other barriers to them delivering effective support to their autistic patients included a lack of services for autistic adults who do not have an intellectual disability or mental health condition.
Structural barriers
- Underfunding of mental health services for autistic people
- Difficulties travelling to services (e.g. due to sensory overload on public transport)
- Lack of research into the mental health needs of autistic adults
Healthcare system barriers
- Professional’s difficulties recognising symptoms of mental ill-health (e.g. assuming these were due to autism, rather than a mental health condition)
- Complicated pathways to access support
- Ineligibility for services due to autism diagnosis or being ‘too complex’
- Lack of support, training, knowledge and confidence of professionals to provide mental health interventions for autistic people
- Inflexible or inappropriate service provision, which could lead to autistic people being perceived as ‘not engaging’ with care (e.g. autistic teenagers being transferred to adult services before feeling ready)
- Lack of certainty about what therapy may involve
- Over-reliance of standard self-reported mental health measures which may be unsuitable for some autistic people (e.g. due to atypical presentations of mental health conditions)
Individual barriers
- Difficulties recognising the symptoms of mental ill-health
- Previous poor experiences in mental health services, which can mean that some people lose trust in services
Parents and carers of autistic children can also face barriers to accessing support for their child, which can have a negative impact on their own mental health (Jackson, Keville and Ludlow, 2020).
ADHD
There is limited research investigating if people with ADHD face specific barriers to accessing mental healthcare.
- A small study involving 30 adults with ADHD found that they reported facing ‘an uphill struggle’ to accessing services, particularly if they were diagnosed in adulthood, which had led to psychological distress, functional impairment and depressive mood in some people (Matheson et al., 2013). Key themes included:
- Lack of understanding around adult ADHD from healthcare professionals
- Struggles with the bureaucratic processes of accessing healthcare (e.g. stress associated with collecting medications every month, difficulties remembering to attend appointments)
- Difficulties moving between child and adult mental health services.
- Some studies report that unrecognised ADHD may be associated with poorer adherence and/or responses to mental health treatment, for example due to forgetfulness (Barkley and Brown, 2008), whilst effective treatment of ADHD may help to manage mental health symptoms (Katzman et al., 2017).
One review looking at the barriers parents face in seeking out mental health interventions for children with ADHD identified that parents may not fully understand ADHD and the potential benefits of ADHD treatment, may face stigma around mental health conditions and struggle to seek out treatment when dealing with other issues, such as financial difficulties and parental mental ill-health (Kappi and Martel, 2022).
Structural barriers
- Transport and distance to healthcare service
Healthcare system barriers
- Limited access to culturally competent services
Individual barriers
- Parental mental healthcare seeking behaviours (e.g. due to past negative experiences with mental health services)
- Lack of knowledge of ADHD, ADHD treatment and where to get support
- Stigma
Additional resources
References
The references for this section can be accessed here.