Neurodiversity

Note on terminology: ‘neurodiversity refers to the different ways a person’s brain processes information’ (Cambridge University Hospital, 2023). It is an umbrella term used to describe a number of these variations, such as autism, attention deficit (hyperactivity) disorder (ADHD/ADD) and other conditions. It is estimated that around 1 in 7 people in the UK have some kind of neurodivergence (Cambridge University Hospital, 2023). 

There will be a full chapter on the mental health needs of neurodivergent populations in the mental health needs assessment, which will be published in 2024.

• Around 80% of autistic adults have a mental health condition (Harper, Smith, Simonoff, Hill, et al., 2019)/ 3 in 4 have sought support for their mental health in the past 5 years (All Party Parliamentary Group on Autism, 2019).
• Up to 10% of adults in inpatient mental health services are autistic, compared to just 1% of the general population (Harper, Smith, Simonoff, Hill, et al., 2019). By age 25, (Martini et al., 2022):
  • 22% of autistic women have been hospitalised due to poor mental health.
  • 11% of autistic men have been hospitalised due to poor mental health.
  • Comparatively, 4% of the general population has been hospitalised due to poor mental health.
• 35% of autistic adults have attempted suicide (All Party Parliamentary Group on Autism, 2019).
  • Autistic adults who are depressed report high rates of suicidal thoughts and attempts (Crane et al., 2019).
  • Evidence suggests that there are disproportionately high rates of elevated autistic traits, and potentially undiagnosed autism, amongst people who die by suicide (Cassidy et al., 2022).
• More than 2 in 10 women with anorexia are autistic (Westwood & Tchanturia, 2017).
• Around 70% of autistic children have at least one mental health condition, and 40% have multiple mental health conditions (Harper, Smith, Simonoff, Cawley, et al., 2019).
• People with ADHD are more likely to have alcohol and substance use issues and depression over their lifetime than those who do not have ADHD (Pehlivanidis et al., 2020).
• People with ADHD also have higher rates of conduct disorder and antisocial personality disorder (Sciberras et al., 2009).
• Women and girls with ADHD are more likely to experience anxiety and mood disorder, and eating disorders, than their peers (Sciberras et al., 2009). Evidence for the risk of anxiety amongst boys and men with ADHD is mixed (Sciberras et al., 2009).

It is also important to note that people can have more than one form of neurodivergence: for example, around 20% of young people with ADHD also have autism (Pehlivanidis et al., 2020).

Local population

• There are around 8,700 autistic people in Cambridgeshire and Peterborough (Cambridgeshire County Council & Peterborough City Council, 2021):
  • 27,00 are aged between 5 and 24.
  • 4,500 are aged between 25 and 64.
  • 1,500 are aged 65+.
• It has been predicted that the number of autistic people in Cambridgeshire and Peterborough will rise to 9.300 by 2035 (Cambridgeshire County Council & Peterborough City Council, 2021).

Risk factors for poor mental health

• Experiences of discrimination, internalised stigma, and feeling the need to hide autistic traits (which is known as ‘masking’) are associated with poorer wellbeing and heightened psychological distress (Botha & Frost, 2020).
• Fewer than half of autistic children and young people report being happy at school (All Party Parliamentary Group on Autism, 2019).
• Young autistic adults at a much higher risk being bullied than their non-autistic peers; and are less likely than non-autistic peers to complete post-secondary education and to enter employment (Crane et al., 2019). However, it is important to note that the prevalence of mental health conditions is also high in employed autistic adults who have high levels of education (Gotham et al., 2015; Prince et al., 2007).
• Autistic adults experience higher rates of domestic abuse and physical assault; but are less likely to confide in others about these experiences or report them to the police (Pellicano et al., 2022).
• Many autistic people have other co-occurring conditions, including:

Figure 68: Estimated proportions of autistic people who have the following conditions. Image source: (Cambridgeshire County Council & Peterborough City Council, 2021)

• Children and adults with ADHD are more likely to experience social isolation (Sciberras et al., 2009).
• Compared to their peers, school pupils with ADHD score lower in academic tests and are more likely to be excluded from school (Sciberras et al., 2009).

Access

Autistic people are report high levels of unmet mental health needs (Pellicano et al., 2022) and are often unable to access community mental health support (Brede et al., 2022; Harper, Smith, Simonoff, Hill, et al., 2019). This can result in their mental health deteriorating to the point where they require emergency or inpatient care (Harper, Smith, Simonoff, Hill, et al., 2019).

Structural barriers to accessing mental health support

• High levels of stigma around autism, on top of stigma around mental health conditions, can act as a ‘double disadvantage’ and prevent young autistic people from discussing their mental health needs with friends, family and healthcare professionals (Crane et al., 2019).

Healthcare system barriers to accessing mental health support

• Long waiting lists:
  • Autistic people in Cambridgeshire and Peterborough report facing a ‘long journey’ to accessing mental health support, sometimes because their needs were perceived as ‘too complex’ (Healthwatch Cambridgeshire & Healthwatch Peterborough, 2021).
  • Nationally, 82% of autistic adults feel that the process of getting support from mental health services takes too long (All Party Parliamentary Group on Autism, 2019).
• Lack of understanding of autism:
  • Autistic people in Cambridgeshire and Peterborough report it can be difficult to access an autism diagnosis (Healthwatch Cambridgeshire & Healthwatch Peterborough, 2021).
  • Nationally, young autistic people report that their mental health problems have been confused with autistic traits, which could prevent them from accessing support (Harper, Smith, Simonoff, Cawley, et al., 2019).
• Lack of mental health services which are accessible to autistic people:
  • Local research highlights a need for a ‘clear, defined, accessible way’ for autistic people to request adjustments in healthcare (Cambridgeshire County Council & Peterborough City Council, 2021).
  • Nationally, autistic adults report that there is lack of appropriate mental health services available in their local area; and that services tend to be geared towards autistic children and their non-autistic parents rather than autistic adults (Camm-Crosbie et al., 2019).
  • Nationally some autistic young people report being ineligible for Child and Adolescent Mental Health Services (CAMHS) services due to their autism diagnosis (Harper, Smith, Simonoff, Cawley, et al., 2019).
• Autistic people in Cambridgeshire and Peterborough report finding the transition from CAMHS to adult mental health services difficult (Cambridgeshire County Council & Peterborough City Council, 2021).

Individual barriers to accessing mental health support

• Autistic people may find it difficult to self-identify poor mental health (Crane et al., 2019)

BARRIERS TO ACCESSING DIAGNOSIS

• A recent report on local people’s experiences found that (Healthwatch Cambridgeshire & Healthwatch Peterborough, 2021):
  • Women faced specific difficulties access autism diagnoses.
  • That there is a long wait to access an autism diagnosis, of around 3 to 5 years.
  • That people with mental health conditions found it harder to access support after an autism diagnosis.
• National data on access to autism diagnoses shows that:
  • There are strong inequalities in access to diagnosis autism services in childhood, which varies by free school meal eligibility, first language spoken, sex, and ethnicity (Roman-Urrestarazu et al., 2022).
  • People diagnosed with autism as adults may have poorer mental health and quality of life than those diagnosed in childhood (Atherton et al., 2022).

Experience

‘I have been in and out of therapy for more than half of my life and I am still trying to find somebody who not only has an understanding of autism, but also knows how autism can affect your mental health, your daily life.’ – Autistic young adult living in Cambridgeshire and Peterborough (Healthwatch Cambridgeshire & Healthwatch Peterborough, 2021)

• A report by Healthwatch Cambridgeshire and Peterborough found that autistic people reported (Healthwatch Cambridgeshire & Healthwatch Peterborough, 2021):
  • Having had many periods of mental health crisis.
  • That services did not always understand how autistic people may present with mental health conditions.
  • That people felt ‘dismissed, excluded and misunderstood’ when trying to access mental health support.
• Autistic adults report that mental health professionals can lack understanding of autism, and that many services are not suited to their needs (Camm-Crosbie et al., 2019). As a result, seeking mental support can be a disempowering experience (Camm-Crosbie et al., 2019).
• Autistic people are more likely than the general population to be misdiagnosed with mental health problems (Harper, Smith, Simonoff, Hill, et al., 2019).
• A meta-synthesis of qualitative studies summarised the experiences of autistic adults as (Brede et al., 2022):
  • Facing barriers at every step of care, including services being designed for neurotypical patients.
  • Having negative consequences of seeking treatment, including inappropriate use of medication.
  • Autistic traits, such as sensory sensitivities, could impact their ability to engage in treatment.
• It has been estimated that 30,000 to 35,000 adults with a learning disability and/or autism in England are taking psychotropic medicines despite not having any health conditions which these medications are used for (NHS England, 2017b).
  • Such drugs are often used to ‘sedate or calm’ individuals who are presenting with behaviour that is perceived as challenging, rather than dealing with the underlying cause of the problem or actively improving people’s quality of life (Royal College of Psychiatrists, 2021).
  • Many of these medications are damaging to physical people’s health, such as increasing risk of cardiovascular disease (Royal College of Psychiatrists, 2021).
• Only a third (32%) of autistic adults rate mental health professionals as having a ‘good’ or ‘very good’ understanding of autism (All Party Parliamentary Group on Autism, 2019).
• Nationally young people with ADHD often find it difficult to transition from child and adolescent mental health services (CAMHS) to adult mental health services (Hall et al., 2015).

Outcomes

More work needs to be done on the mental health outcomes of neurodivergent populations, at both a local and national level.

Additional resources

• The local data pack gives an overview of key data and trends
• The All Age Autism Strategy 2021 – 2026 for Cambridgeshire and Peterborough
• Autistic voices: Local people’s health and care experiences
• Autistica’s briefings on autistic children and young people’s and autistic adults’ mental health
• The Autism Act, 10 Years On
• No wrong door: a vision for mental health, autism and learning disability services in 2032.
• Supporting people with a learning disability and autistic people to live happier, healthier, longer lives: bitesize guide for local systems
• Getting words right about autism
• Social determinants of health inequalities for neurodivergent children and families 

References

Full list of references is included at the end of this chapter.

Previous page

Next page