Multimorbidity in autistic people and people with learning disabilities

Multimorbidity | Last Updated: 19 Aug 25

Background

A multimorbidity index is a list of conditions that assigns a score to a patient based on the conditions they have. This score is then used to predict deterioration in the patient. There is a large variety of multimorbidity indices available, but all are based on information from the general population. Research has shown that the physical and mental health conditions commonly experienced by autistic people or people with learning disabilities are different from those in the general population. In addition, general health, multimorbidity and premature mortality have been shown to be worse in autistic people and people with learning disabilities as compared to the general population

What we did

Using data from the British Heart Foundation COVID consortium spanning the whole population of England, we used machine learning techniques to create a multimorbidity index for autistic people based on autistic people only. We then looked at how well this multimorbidity index predicted COVID-19 mortality in autistic people when compared with a multimorbidity index based on the general population.

We investigated what the differences are between patterns of physical and mental health conditions experienced by autistic people and people with learning disabilities as compared to the general population. Based on these differences, we aim to determine whether there is a need for adjustment of specific tools, such as a multimorbidity index to predict patient deterioration, for autistic people and people with learning disabilities.

What we found

The index based on autistic people only was slightly better at predicting COVID-19 mortality in autistic people. Because our data had few people, this suggests that a larger sample or one that looks at mortality beyond COVID-19 may have more profound differences between predictions. Our study shows that there is a case to be made to create multimorbidity indices specifically for autistic people to improve their accuracy.

Key findings:

• A tailored index performs better than general-population based tools. Even though the difference is small, when it comes to mortality this can make a big difference.
• Since this study was a case-in-point study, its scope is quite narrow. Despite that, we were able to find a better performance for the tailored index. It is reasonable to assume that replication in more generalised mortality may produce more significant findings. This study contributes to the body of evidence suggesting that precision medicine is especially important in marginalised groups.
• Further, it can help in identifying conditions that are currently under-explored but important for autistic adults. In our study, thyroid and cardiac conditions were especially significant in predicting COVID-19 related mortality in autistic adults. Yet, even outside of COVID-19 context these conditions are understudied in autism.

What these findings mean

Precision medicine/healthcare has become increasingly recognised as important in clinical decision making. The ASD-MI is one of many tools that illustrates the potential for tailored risk tools.
Our data highlights the importance of understanding the differing health profiles of autistic adults, highlighted by the improved accuracy of the ASD-MI and emergence of understudied conditions as important mortality predictors.

The full published findings from this study can be found online in the Journal of Autism and Developmental Disorders at the link below.

An Easy Read summary can also be found at the link below.

Project information last updated in May 2025.

Group member(s) involved with this study

Dewy Nijhof

Dewy is a Research Assistant with the Scottish Learning Disabilities Observatory. She has previously completed internships within the EU-AIMS consortium, a Europe-wide collaboration which aims to gain a better understanding of autism - neurologically, genetically, and behaviourally - and experiences of people with Autism and their families in order to decrease difficulties that are associated with Autism. After finishing her degrees in Psychology and Brain Sciences, she worked in the field of Public Health, where she focused particularly on health inequalities in vulnerable groups within the community. In her current position with the Observatory, she is able to combine her experience in Public Health and Autism research. She will be focusing on large datasets, such as census and health record data, in order to gain a better understanding of health inequalities experienced by people with Autism in Scotland.

25 035 Scottish Learning Disability Staff Portraits Filip Sosenko 022 staff image

Dr Filip Sosenko

Filip joined the Scottish Learning Disabilities Observatory in 2021 as a Research Associate and is currently conducting research into covid-19 outcomes among people with learning disabilities. His previous research focused on severe poverty and associated phenomena, such as the use of food banks, homelessness, and ‘complex needs’. A sociologist by background, Filip has a keen interest in health inequalities. He has advanced statistical skills and expertise in research methodology.

Dr Laura Ward

Laura is an Affiliate Associate Researcher at the Observatory, involved in ongoing work about cancer screening, cancer incidence and cancer-related deaths, as well as pain and prescribing in adults with intellectual disabilities/autism. In 2023, Laura took up the role of Project Manager of the Trusted Research Environment (TRE) at the Health Informatics Centre (HIC) at the University of Dundee. The TRE, or Safe Haven as it is known in Scotland, is responsible for curation and provisioning of NHS Scotland patient data.

Professor Deborah Cairns

Deborah is the Director of the Scottish Learning Disabilities Observatory and Professor of Health and Neurodevelopmental Conditions, in the School of Health and Wellbeing, at the University of Glasgow. Deborah is passionate about her research which aims to improve the health of people with learning disabilities and their families. She has worked on many different projects about people with learning disabilities including: cancer incidence, cancer screening, multi-morbidity (having two or more health conditions), oral health and COVID-19, to name a few. She has also worked on projects about the physical and mental health of family members who support someone with a learning disability. Deborah is committed to conducting research that has impact and works closely with self-advocates with learning disabilities, family carers and third sector organisations who are pivotal in all of her work and who have a shared vision of ensuring the human rights of all people with learning disabilities are recognised, supported and upheld. Read more about Deborah here.

17 128 Laura Hughes Mccormack 001 staff image

Dr Laura Hughes

Laura is a Lecturer in Clinical Psychology at the University of Glasgow, and an affiliate of the Scottish Learning Disabilities Observatory, having joined the team in 2015. With the Observatory, Laura was involved in projects looking at the health of people with learning disabilities in a number of large data-sets, including primary health care records, Scotland's 2011 Census and health records of people born with Down Syndrome in Scotland over a 25 year period. Laura studied Psychology and has extensive experience of working with people with learning disabilities in her previous roles, for example, as a Befriender, a Learning Assistant and an Assistant Psychologist. Read more about Laura at the link below

Dr Ewelina Rydzewska-Fazekas

Ewelina is an Affiliate Associate Researcher with the Scottish Learning Disabilities Observatory. Ewelina's work with the Observatory focused around health inequalities and the health needs of people with autism. She is now based at the University of Edinburgh School as a Lecturer in Health Futures at the Edinburgh Futures Institute and School of Health in Social Science.