Diagnosing autism takes account of a person’s differences in social interaction and communication, sensory sensitivity, interests and behaviours. Yet autism varies hugely from person to person, both in how it looks and how it is experienced. This is because the term autism covers a broad range of different conditions, rather than a single category or condition.

Understanding and accounting for this variation presents challenges for local organisations which plan and deliver services for autistic people. The high volume and coverage of academic research on autism means that making sense of the evidence can be difficult for commissioners and other professionals involved in organising and delivering these services.

What we did

The Black Country and West Birmingham Healthier Futures Academy (BCWB) commissioned the Strategy Unit to make sense of a ‘snapshot’ of the existing evidence around autism. In order to supplement and inform plans to improve or devise local services that would better meet the needs of autistic people of all ages.

Our rapid evidence scan focused on autistic people who do not have a learning disability, given more advanced local efforts to improve services for people with a learning disability.

We set out to review evidence from peer-reviewed academic and non-academic sources, focusing on several topics of interest indicated by BCWB:

• Population characteristics (prevalence, demographic characteristics, common illnesses that present together);
• Health behaviours and health-risk behaviours;
• Variation in health outcomes and the wider determinants of health;
• Access to health and care services;
• Current policy and recommended changes.

We searched the evidence databases Medline and Healthcare Management Information Consortium (HMIC) for research articles with relevant key words. This found 900 research articles, of which we prioritised evidence published in the last five years.

Excluding articles that weren’t related to our topics, we had a final output of 90 relevant articles, which we examined by topic and evidence type. Key findings from each topic were collated.

What we found

It was clear that gaps in research, policy, and societal understanding have material consequences on the ability to plan and deliver appropriately tailored services. For example, infrequency and inconsistency in the way that demographic data are collected locally and nationally mean that existing knowledge of how different sociodemographic groups experience autism is limited.

We also found evidence to suggest autistic children, young people and adults are considerably more likely to have additional physical and mental health conditions. Some recent cohort studies also suggest that autistic adults are more likely to die prematurely, compared to the general population.

While this evidence scan provides a ‘snapshot’ of recent and relevant evidence and was not intended to be systematic or exhaustive, we didn’t come across any evidence that looked at common health conditions in autistic older adults. This may suggest that limited research has been done to understand the burden of health problems and support needs for this group.

Of greatest concern was our finding that suicide is one of the most common causes of death for autistic people. Yet many autistic children and young people struggle to access appropriately tailored community mental health support, such as crisis support. This is particularly worrying given elevated levels of depression, anxiety, and other common mental health conditions experienced by autistic people.

Next steps

Our findings highlight the need to ground local and national policy and decision-making in robust evidence and meaningful involvement of autistic people themselves. Doing so consistently will enable the NHS and wider organisations to better anticipate and meet the needs of autistic people of all ages in the future. 

Disparities in health outcomes, inequity in access to health services, and restricted opportunities for inclusion in wider society remain the rule, rather than the exception, for many. This is despite progress in understanding and awareness in recent years, and a drive to improve policy and planning championed by national charities and advocacy groups.

BCWB is using the findings of this rapid evidence scan as part of its wider activities to assess and better understand the needs of autistic people in the region. For example, it is hoped that the development of a framework to capture what matters to autistic people of all ages will highlight the most impactful changes that can be made. Helping to guide future autism service development in the Black Country.

Here is the full rapid evidence scan: