Health and Wellbeing summit report

In September 2017, we held a global summit to establish priority research areas to improve the physical health and wellbeing of autistic adults, enabling them to live longer, happier, healthier lives.

The collaborative workshop featured autistic people and families, researchers, and health and care professionals. Read more about Autistica's collaborative summits here.

Why research physical health and well-being in autistic people?

With the first children to get a diagnosis of autism reaching old age and adults increasingly being identified as autistic, it is more important than ever to understand autism throughout the lifespan.

Our 2016 report Personal Tragedies, Public Crisis highlighted the appalling rates of early death in autistic people relative to the general population.

Many serious medical conditions are more common in autistic adults than in the general population, including seizure, stroke, gastrointestinal disease, immune conditions, sleep disorders and diabetes. What is more, nearly three in four autistic people and families feel that autistic people receive worse healthcare than non-autistic people.

To date, the number of research studies dedicated to investigating the physical health of autistic adults remains in low single figures.

At Autistica, we have committed to addressing the global need for increased and improved physical health research in autism to tackle the unacceptable disparity in autistic life expectancy. Research in this area can help us understand health risks in autism, including their trajectory, and develop better primary healthcare services and interventions for autistic people.

Autistica and Newcastle University hosted a two-day Global Summit including world-leading researchers, autistic adults, relatives and professionals to develop world-class research ideas that could improve the health and wellbeing of autistic people.

Research ideas from the Health and Well-being Summit

Jump to: 1. Health and wellbeing outcomes and measurement 2. Social determinants of health 3. Healthcare self-advocacy 4. Wellbeing 5. Autism-enabling services 6. Toolkits to improve health and wellbeing 7. Annual health checks 8. Priority physical health areas 9. Personalised healthcare (genetics and biology) 10. Sexual development 11. Residential care in older age

Why is this helpful?

Earlier and more appropriate intervention to help autistic people with osteoarthritis.
Improved measurement of self-reported pain in autism.

How would the research be designed?

Conduct a large-scale survey to establish levels of perceived pain in autistic adults, focusing initially on osteoarthritis, compared with the general population.
Use methods such as x-ray imaging to clinically assess pain in the autistic sample, then compare with self-report measures.
Use the outcomes to potentially inform tailoring existing measures of pain to better suit autistic people.

Who would be involved?

Partnerships would be formed with autistic people, third-sector organisations such as Arthritis Research UK, GPs, radiographers, orthopaedic specialists, social care specialists, researchers, epidemiologists and public health specialists.

Things to consider

Whether it would be possible to include other conditions similar to osteoarthritis.
Whether other health factors, such as low muscle tone, hyper-mobility, fibromyalgia, and possible long-term effects of selective serotonin reuptake inhibitors (SSRIs) on bone density, relate to pain in autism.
The reliability and validity of the refined measures of pain and the applicability of the tools beyond osteoarthritis.
Who completes the measures and how the research design can be as inclusive as possible.

Why is this helpful?

High quality data regarding the similarities and differences in terms of social determinants of health in autistic adults compared with the general population.
Specific data to inform service provision and policy decisions related to the health of autistic people.

How would the research be designed?

Conduct an international scoping exercise of existing efforts to use the same population level indicators/ measures across autism research groups.
Organise a collaboration of research groups to establish a core set of demographic, health behaviour and health outcome data.
Examples of demographic data could include: age, gender, ethnicity, income, education level, employment/occupation, relationship status, living situation, and more specific issues such as loneliness.
Examples of health behaviour data could include: alcohol consumption, medication use, smoking, sleep quality and exercise.
Examples of health outcome data could include: physical health and quality of life.
Assess the reliability and validity of suggested indicators/measures.

Who would be involved?

Partnerships would be formed with autistic people, researchers (including specialists in identified areas, e.g. loneliness), health economists, human geographers and epidemiologists in each country.
It would be important to hold an early stage consultation with organisations that would use the data (e.g. Public Health England) to ensure the outputs would be used and would meet their needs.

Things to consider

How to incentivise research groups to join the initiative.
How to capture important nuances in the factors being measured For example, ‘employment/occupation’ should consider employment level comparative to skills and the concept of ‘loneliness’ might be different for autistic people compared with the general population.

Why is this helpful?

Improve autistic people’s ability to obtain quality healthcare.
Improve the health, wellbeing and life expectancy of autistic people.
Improve self-advocacy in other areas of autistic people’s lives.
Transfer knowledge to other health conditions and populations.

How would the research be designed?

Conduct a review of scientific literature and existing good practice, using a broad term such as ‘evidence-based healthcare strategies’.
Use a group communication method called the ‘modified Delphi approach’ to gather the views of experts in the field to reach a consensus on ‘best practice’, to improve patient self-advocacy with regard to accessing healthcare.
Use a qualitative approach (e.g. focus groups or interviews) to consider strategies that have worked or might do so for the majority of autistic adults.
Develop an exemplar approach for healthcare self-advocacy for autistic people, such as a ‘roadmap’ – a visual representation that organises and presents important information related to future plans.
Conduct a feasibility and acceptability trial of the exemplar approach.

Who would be involved?

Partnerships would be formed with autistic people, healthcare specialists, public health specialists, qualitative and quantitative researchers and epidemiologists.
For the qualitative research, a sample of autistic adults aged 40 years and above would initially be targeted, with scope to broaden the age range at a later stage.

Things to consider

Whether ‘self-advocacy‘ is the appropriate term and, if so, how it is defined in this context.
Examples of good practice from other groups, such as people with dementia.
How the project can be as inclusive as possible. For example, how can autistic people with a learning disability or those who are less empowered to seek help be included in the research?
How the exemplar approach can be flexible enough to consider individual experiences, a range of health conditions and different aspects of healthcare (e.g. preventative approaches, access to treatment, and adherence to treatment).

Why is this helpful?

Improve autistic people’s understanding of their personal wellbeing baseline.
Improve autistic people’s ability to identify ways to improve their personal wellbeing.
Inform healthcare providers of autistic people’s personal wellbeing baseline.
Enable healthcare providers to develop more focused personal support plans.
Enable a standardised process for developing care plans and personal budgets.

How would the research be designed?

Conduct a review of scientific literature and secondary analysis of existing datasets to collate evidence on factors associated with wellbeing in autism.
Consult with autistic adults regarding the content, formatting and style of a potential wellbeing tool, specifically engaging with autistic adults who are digitally excluded to consider alternative formats for the tool.
Consult with service providers regarding existing signposting tools and resources, as well as how to design the new wellbeing tool.
Conduct a small-scale pilot of the tool and use a qualitative approach (e.g. focus groups or interviews) to consider how the tool can be refined and revised.
Conduct a feasibility and acceptability trial of the wellbeing tool within two local authorities, including an investigation of the economic value of the tool.

Who would be involved?

Partnerships would be formed with autistic people, service providers, third-sector organisations, qualitative and quantitative researchers, statisticians and health economists.

Things to consider

Scope to develop a digital version of the tool (e.g. an app).
Adaptable and visual models for the tool (e.g. network graphs).
How to enable the tool to cope with the diversity of autism (e.g. item response theory).
How gender development might interact with personal wellbeing.
How a personal wellbeing tool could link to a project on healthcare self-advocacy (see project 3).

Why is this helpful?

Establish the existing evidence base for good practice regarding autism-specific accommodations and service design.
Develop a vision for best practice.
Identify gaps in practitioner knowledge, skills and values.
Identify strategies to change service models to enable an autism-friendly health service.
Improve the health, wellbeing and life expectancy of autistic people.

How would the research be designed?

Conduct a scoping review to collate evidence on autism-specific accommodations and service design. The review should include learning from wider groups, such as learning disability and dementia.
Use a group communication method called the ‘modified Delphi approach’ to gather the views of autistic adults (including under-represented groups), families, service providers and third-sector organisations.

Who would be involved?

Partnerships would be formed with autistic people, families, service providers, third-sector organisations and international researchers.

Things to consider

Whether ‘autism-friendly’ is the right term, and how it is defined.
Whether strategies from education can be applied to the health service.
How visionary innovation can be encouraged within the project, as well as reviewing existing good practice.
How to engage those autistic adults who are currently avoiding or otherwise not accessing services.
How to understand the mechanism that translates an ‘autism-friendly’ health service into improved health and wellbeing outcomes.
How learning can be transferred to other populations to improve the health service more widely

Why is this helpful?

Improve autistic people’s ability to obtain quality healthcare.
Improve experiences of healthcare.
Improve the health, wellbeing and life expectancy of autistic people.

How would the research be designed?

Form a UK–US collaboration to adapt the Academic Autism Spectrum Partnership in Research and Education (AASPIRE) Healthcare Toolkit4 content for use in the UK context.
Explore which media format(s) the toolkit would be better suited to (e.g. visual, video, audio, app, paper, easy read, British Sign Language, Braille).
Conduct a feasibility trial of the integration of the toolkit into the National Health Service (NHS), including investigation of the mechanism of action achieved by the toolkit, and explore how to enable ongoing quality improvement of the tool.

Who would be involved?

Partnerships would be formed with autistic people, families, physical and mental health service providers, Clinical Commissioning Groups, NHS England and the devolved nations, NHS Digital, Royal Colleges, policy makers and international researchers.

Things to consider

How the toolkit can be made as accessible as possible, including personalisation and assistance for people with learning disabilities and those without English as their first language.
How the toolkit could be accessed by undiagnosed autistic adults and whether it could support the diagnostic process.
What an appropriate time scale would be to determine effectiveness and impact.
Whether different toolkit formats are more appropriate at different life stages.
Existing websites the toolkit could be integrated with (e.g. National Autistic Society).
Whether the toolkit can be applied beyond healthcare settings.
How a UK toolkit could link to a project on annual health checks (see project 7).

Why is this useful?

Increase access to healthcare and offer of healthcare interventions.
Improve experiences of healthcare.
Lower the cost of healthcare through preventative action.
Improve the health, wellbeing and life expectancy of autistic people.

How would the research be designed?

Conduct a review of scientific literature to collate evidence on the use of health checks (e.g. learning disability health checks).
Use a qualitative approach (e.g. focus groups or interviews) to consider the thoughts of autistic adults and healthcare professionals.
Conduct a national survey to gather a wider perspective.
Assemble a multi-disciplinary team to create a health check.
Conduct a feasibility and acceptability trial of the health check, including investigation of training requirements and preferred location for use (e.g. GP practice versus an autism specific service).

Who would be involved?

Partnerships would be formed with autistic people, caregivers and supporters, healthcare providers, including GPs and nurses, Clinical Commissioning Groups, local authorities, NHS England and the devolved nations, third-sector organisations, researchers and IT specialists.

Things to consider

Factors affecting identification and uptake of the health checks.
The age from which the health check would be initiated.
The level of personalisation required and how this can be achieved.
Whether the health check should be integrated into clinical training.

Why is this useful?

Improve understanding of the prevalence of cardiovascular and gut problems in autism.
Improve understanding of autism-specific contributory factors.
Develop lifestyle and medical interventions to reduce contributory factors.
Improve the health, wellbeing and life expectancy of autistic people.

How would the research be designed?

Conduct a review of scientific literature to understand what is known about the prevalence, and effectiveness, of treatments for cardiovascular and gut problems in (i) autistic adults (ii) other neurodevelopmental conditions, and (iii) the general population.
Conduct an international prevalence study of specific cardiovascular and gut conditions in autistic adults.
Consult with autistic people and healthcare specialists regarding potential autism-specific contributory factors.

Who would be involved?

Partnerships would be formed with autistic people, researchers, statisticians and healthcare specialists, including cardiologists, gut specialists, pharmacologists, geneticists, occupational therapists, dieticians, and sleep consultants.

Things to consider

Whether there is existing epidemiological data (e.g. Kaiser Permanente data5) that is sufficient to answer the question about the comparative prevalence of cardiovascular and gut problems.
Whether level of exercise and medication use are among the contributory factors to cardiovascular problems in autism.

Why is this useful?

Enable autistic people to re-engage with the opportunities to use knowledge about genetics and biology to improve health and wellbeing.
A strategy for the development of personalised healthcare and stratified medicine, mutually agreed by autistic people, relatives, clinicians and researchers.

How would the research be designed?

Use a mixed method approach to consult with autistic people regarding opportunities to use knowledge about genetics and biology to improve health and wellbeing – this could include workshops, surveys and qualitative interviews. The discussions would be framed by examples of the application of knowledge from epigenetics and genetics, as well as drug development and personalised treatment.

Who would be involved?

Partnerships would be formed with autistic people, families, health service providers (with and without experience of autism), pharmacists, NHS England and the devolved nations, Public Health England, sociologists, ethicists, qualitative and quantitative researchers.

Things to consider

How representative views can be captured from across the autistic community.
How the different aspects of ‘genetics and biology’ can be presented and discussed.

Why is this useful?

Improve understanding and awareness of issues related to sexual development among autistic people and health professionals.
Improve access to relevant services.

How would the research be designed?

Improve understanding and awareness of issues related to sexual development among autistic people and health professionals.
Improve access to relevant services.

Who would be involved?

Partnerships would be formed with autistic people, including non-binary and transgender autistic people, qualitative and quantitative researchers, particularly research groups interested in gender and autism.

Things to consider

Whether there is any learning from learning disability research in this area.
Pathways to questioning sexuality, such as a general feeling of ‘not fitting in’.

Why is this useful?

Inform future interventions, resources and policies to improve the health and wellbeing of autistic adults who may require residential care.

How would the research be designed?

Use archival and survey data to calculate general descriptive statistics regarding how many autistic people use residential care facilities for older adults, what type of facilities they are using, and their age and health status.
Use a qualitative approach (e.g. focus groups or interviews) to consider autistic adults’ experiences of residential care for older adults and possible strategies to improve the care experience and support autonomy where possible.

Who would be involved?

Partnerships would be formed with autistic people, relatives, staff/ leadership teams of care facilities for older adults, qualitative and quantitative researchers and policy experts.
For the qualitative research, a sample of autistic adults in residential care for older adults, autistic adults in longterm hospital residence, autistic adults approaching a possible transition into residential care, caregivers, and staff/ leadership teams of care facilities would be targeted.

Things to consider

Whether data on autism diagnosis is routinely collected by residential care services.
Including ‘undiagnosed’ autistic people in residential care.
How different forms of residential care may operate differently.
Whether there are gender differences.
Any risks associated with pursuing research into residential care, such as implicitly promoting care settings with evidence of poor outcomes.

What happens next?

This workshop is only the beginning of the process. We are committed to taking the research concepts forward and evolving them into fundable research proposals that will lead to longer, happier and healthier lives for autistic people. We will work with partner organisations and funders over the coming months to get the remaining questions addressed.

How can you get involved?

Follow us on social media for the latest research news and developments on this project or Join our Autistica Network for updates.

If you think you can help in making this research happen, email Dr Lorcan Kenny to discuss how you could help.