Improving the Health of Older Autistic People: Survey of health needs

• Research type

  Research Study

• Full title

  Improving the Health of Older Autistic People: Survey, focus groups and interviews on health needs across the lifespan

• IRAS ID

  247735

• Contact name

  Barry Ingham

• Contact email

  barry.ingham@cntw.nhs.uk

• Clinicaltrials.gov Identifier

  -, 18/WA/0141

• Duration of Study in the UK

  1 years, 9 months, 1 days

• Research summary

  Mounting evidence suggests that have a diagnosis of autism spectrum disorder (ASD) is associated with increased mortality. Mortality rates for people with intellectual disability are also relatively high. Furthermore, around 30% of people on the autism spectrum also have an intellectual disability. Finally, there is a dearth of research about older autistic people (most studies have samples with an average age of around 30 or less). It is therefore essential to identify ways to improve the health outcomes of autistic people.

  A parallel line of research has found that there are significant health disparities for those with a diagnosis of ASD compared to the general population. The characteristics associated with ASD (i.e. difficulty with social communication and increased sensory sensitivity) have been advanced as one potential reason. Researchers have called for healthcare services to make adjustments based on the unique needs of autistic people.

  The aims of this study are to (1) survey adults with an ASD diagnosis, including those adults with an ASD diagnosis represented by a relative or carer, about their experience of current NHS physical health care services for autistic adults; (2) survey health professionals who contribute to the delivery of physical health care, about current NHS service provision for autistic adults; and (3) through focus groups and interviews, consult with older autistic adults, relatives of older autistic adults and health professionals about their experiences of current NHS physical health care services, and the barriers and facilitators to access for older autistic adults.

  The findings will provide NHS clinicians and policymakers with evidence based information on best ways to provide physical health care to autistic adults. This information will therefore also benefit people with ASD and their relatives.

• REC name

  Wales REC 5

• REC reference

  18/WA/0191

• Date of REC Opinion

  18 May 2018

• REC opinion

  Favourable Opinion