ADHD and autism

ADHD and Autism

National research shows that both autistic people and people with ADHD are more likely to experience mental ill-health than the general population (Katzman et al., 2017; Lai, 2023), and report facing barriers to accessing mental health support (Price et al., 2020; Brede et al., 2022). Some autistic people and people with ADHD are unable to access effective mental healthcare, which can result in high levels of unmet mental health needs, poor outcomes, and in some cases, long stays in inpatient metal health settings (Bitter et al., 2019; NHS England, 2023c). The COVID-19 pandemic has slowed progress towards ensuring that all autistic people and people with ADHD are able to access the support they need to live full and happy lives (DHSC, 2021b; Behrmann et al., 2022).

This section of the mental health needs assessment explores mental health needs and care for autistic people and people with ADHD, including access to diagnostic assessments for ADHD and autism; and access, experience and outcomes from mental health services. The full report can be downloaded as a pdf.

Summary
Wider context
Local population
What do local people tell us?
Wider determinants and inequalities
Barriers
Faciliators
Mental health services

Recommendations

Local population

  • Continue to capture the lived experience of autistic people and people with ADHD, including a focus on the experiences of people from a range of ethnic backgrounds and people in contact with the criminal justice system.
  • Improving system understanding around neurodiversity and make sure that strategies recognise that many autistic people and people with ADHD have other neurodevelopmental conditions, as well as mental health needs.
  • Ensure future strategies and planning around mental health services recognise that autistic people and people with ADHD are more likely to experience mental health conditions.
  • Ensure future strategies and planning around physical health services recognise that autistic people and people with ADHD are more likely to experience some physical health conditions.

Wider determinants and inequalities

  • Investigate support for people with ADHD and autistic people at risk of homelessness, and those experiencing homelessness, in Cambridgeshire and Peterborough
  • Investigate access to ADHD and autism assessments and support for people in contact with the criminal justice system, including people in prison and leaving prison, to ensure that continuity of care and medication is a priority for these populations.
  • Strengthen partnership working between Early Help and social care services, with autism and ADHD services.
  • Recognise that autistic people and people with ADHD are an important group to consider in trauma-informed approaches and should be integral to the development of a trauma informed approach.
  • Continue to investigate, and address, the barriers to healthcare faced by trans people who are autistic and/or have ADHD.

Assessment, diagnosis and management

  • Develop a communication strategy for the general population about ADHD and autism services in Cambridgeshire and Peterborough. This should be accessible and recognise that many autistic people and people with ADHD have developmental language disorders; as well as including information around the ADHD medication shortage.
  • System work is needed on the commissioning of autism and ADHD assessments, relatively to the size of people in the local population and increased demand for assessments.
  • Assess the offer of pre/post-diagnostic support for ADHD and autism.
  • Investigate current pathways, referrals and wait times for people with multiple neurodevelopment conditions.
  • Ensure that service planning for ADHD and autism assessments have a focus on equitable access for diagnosis and treatment, including age, gender, ethnicity, district, substance use, criminal justice involvement.
  • Evaluate the case for offering joint assessments for autism and ADHD, when relevant.
  • Align with PCREF work to understand inequalities in access to autism and ADHD assessments for children and adults from Black and Asian and other minority ethnic groups.
  • Look into access to autism and ADHD assessment for young adults, including whether young people transitioning from child to adult services wait longer to access assessments.

Barriers and facilitators

Recent work done as part of the local Learning Disability Long-Term Improvement Programme identified similar issues in terms of barriers to access to mainstream mental health services faced by people with learning disability, including commissioning arrangements, workforce training and reasonable adjustments. This should be joined up with work around autism and ADHD where relevant.

  • Deep dive into what are reasonable adjustments in mental health services for people with ADHD and Autism, whether diagnosed or not, and the support that services need to be able to provide these (e.g. technology, training).
  • Develop an ICS-wide strategy to meet NHS England guidance around meeting the needs of autistic adults in mental health services.
  • Evaluate the evidence base for early interventions that can support autistic people and people with ADHD, to support mental wellbeing and prevent mental illness. This should include different types of digital support.
  • Promote the use of the NHS Digital Flag for reasonable adjustments, including awareness among staff and patients.
  • Continue to investigate staff training needs, including awareness of the protocol for people with a learning disability and/or autism on Dynamic Support Registers and Care and Treatment Reviews (CTRs). Develop a plan to address training needs around autism and ADHD, so that frontline workers are able to consider if mental health needs are linked to challenges related to autism and/or ADHD.

The following recommendations are based on the survey results:

  • Promote collaboration and joined up working around autism and ADHD across mental health services, primary care, social care, education, criminal justice, out of hours and crisis services.
  • Investigate adjustments in online appointments in mental health services, including best practice and current provision in Cambridgeshire and Peterborough.
  • Promote understanding of how best to involve and support family and friends, when their loved one is receiving care in mental health services.

Mental health interventions

  • Look into patterns of rejected referrals into mental health services for autistic people and people with ADHD and use this to inform understanding of reasonable adjustments.
  • Investigate access and experience of primary care for autistic people and people with ADHD.
  • Further work is needed to understand the needs of older autistic adults and older adults with ADHD.
  • Start to segment outcomes for people with ADHD and/or autism across mental health services.
  • Ensure a digital mental health strategy considers the benefit of digital mental health tools for autistic people and people with ADHD.
  • Continue to work on understanding the range of effective therapeutic interventions for people in mental health services with ADHD and autism across all ages.

Additional resources

References

The references for this section can be accessed here.

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