Many autistic people rely on social care services but there is very little research evidence about how best to provide these services. We held a collaborative workshop at the University of Kent to develop research ideas to improve adult social care and help people to live long, happy, healthy lives. This is a report of the research ideas created at the workshop.

The workshop featured autistic people and families, researchers, health and social care professionals.

Why research autism and social care?

As a group, autistic people face substantial inequalities in terms of their life expectancy, health and well-being. For many autistic people, high-quality social care is key to alleviating these inequalities.

It is common for autistic adults to require social care throughout their lifespan, yet the limited attention received by social care in research has focused on the school-age population. A scoping review of the available research evidence about adult social care undertaken by the University of Kent, and commissioned by Autistica, shows that there has been limited research activity in this area and the quality is, on the whole, unacceptably low.

For the autistic people who require social care and for their families, access to social care is often unsatisfactory. While some receive critically important care by dedicated professionals, generally speaking, the services and supports available are inadequate or inappropriate and the outcomes achieved can be poor. This has tragically been evidenced in recent high-profile cases of avoidable early deaths of autistic people in social care settings.

Research has a major opportunity to provide solutions to improve social care for autistic adults. It is therefore no surprise adult social care was rated as the third highest research priority by autistic people and their family members in an autism research priority setting exercise led by Autistica and partners.

The aim of this workshop is to address the dearth of research in this area and to set in motion a research agenda for social care in autistic adults, and to address current barriers to research such as a lack of research culture, workforce skills, and lack of engagement and funding in social care research.

Research ideas from the Social Care Summit

Jump to: 1. Housing and homelessness 2. Autistic-led peer mentoring 3. What does good social care look like? 4. Mapping social care in the UK 5. Supported employment 6. Pre- and post-diagnosis support 7. Process measures and quality of care 8. Transitions 9. Low-level support 10. Staff training 11. Self-generated outcome measures

1. Housing and homelessness

Are there common precipitating factors that lead to periods of homelessness for autistic people? Among those who achieve good outcomes after periods of homelessness are there any supports that are commonly reported as having been helpful?

Why is this helpful?

  • We know autistic people are over-represented in the homeless population
  • We also know that autistic people are at increased vulnerability to abuse and other forms of victimisation
  • It follows that homeless autistic people may be doubly vulnerable
  • Understanding what factors increase an autistic person's risk of becoming homeless will make it possible to identify those who are at risk before they become homeless
  • The preemptive identification of autistic people at risk of homelessness will allow research that tests preventative measures, which if successful, would reduce the incidence of homelessness among autistic people
  • Collecting the accounts of autistic people who have experienced homelessness and achieved good outcomes will help us design and evaluate the effectiveness of supports for autistic people who experience homelessness

How would the research be designed?

  • Ask autistic people who previously experienced periods of homelessness or of inappropriate housing about their experiences
  • Try to establish if there are either disability-specific or autism-specific reasons that contributed to their homelessness – for example, falling behind on rent and bills or inability to access welfare payments because of cognitive difficulties, difficulties resolving interpersonal conflicts with cohabitants, unstable employment, greater risk of experiencing domestic violence or abuse or a differential risk to substance misuse
  • Ask those who have overcome homelessness what helped them or what they think would have helped had it been available

Who would be involved?

  • Autistic people
  • Those with experience of homelessness
  • Researchers
  • Social workers
  • Social care providers
  • Department of Work and Pensions
  • Homelessness representative organisations
  • Family members or friends of autistic people with experiences of homelessness

Things to consider

  • There are likely many undiagnosed autistic people in the homeless community
  • There are also likely many people with multiple co-occurring conditions in the homeless community, research should consider how these interact
  • The causes of homelessness are multifaceted – research must take an inter-sectional approach

2. Autistic-led peer mentoring

How do outcomes and experiences differ between autistic adults participating in a programme of autistic-led peer support and those receiving no peer-support?

Why is this helpful?

  • Some theoretical accounts of autism suggest that non-autistic people struggle to empathise with autistic people's experiences and that, by extension, autistic people are best placed to empathise with other autistic people
  • A consequence of this suggestion is that autistic people may be able to provide some therapeutic effects unavailable to non-autistic supporters
  • Non-autistic care staff often misunderstand the needs and desires of autistic people they work with and this could lead to inappropriate goals being imposed on autistic people
  • There are many anecdotal accounts that suggest autistic-led peer support and spaces reserved only for autistic people may be beneficial
  • There are also anecdotal accounts that autistic-led peer support can be challenging or harmful
  • Empirical evidence about possible benefits or pitfalls of autistic-led peer support is sparse
  • If a robust evidence base can be established and it demonstrates that, on balance, autistic-led peer support is beneficial, this can be used to commission services

How would the research be designed?

  • Establish a peer-support hub with a group of trained autistic peer supporters
  • Recruit autistic adults who would like to access peer support to the hub
  • Randomise new hub members to receiving peer support or to a waitlist control
  • Determine if there is a change between baseline and follow-up measures in wellbeing of participants and the extent of this change differs between groups
  • Explore the perceived usefulness and overall experience among autistic adults who received peer support

Who would be involved?

  • Personnel to run a hub
  • Peer support facilitators
  • Autistic adults who join the autism hub
  • An advisory group with and without experience of peer-support
  • Researchers who specialise in randomised experiments

Things to consider

  • A study of this kind would need to assess for possible negative outcomes that could come about from an autistic-led peer-support intervention
  • The belief that autistic-led activities or autistic spaces are beneficial are deeply entrenched for many in the autistic community and so a study of this nature would need to carefully control for this, especially if outcome measures are unblinded

3. What does good social care look like?

Would trials of different models of social care help make social care commissioning decisions more evidence informed?

Why is this helpful?

  • Decisions are regularly taken to change the way in which care is provided based on an assumption the new approach will improve something (e.g., experience of person receiving support, re-admission into acute health settings, access to services) but these assumptions are rarely supported by evidence
  • Understanding the relative impact of different models of care on set outcome measure and the resource implications of each would allow for better decision making about local offers

How would the research be designed?

  • There is huge regional variability in models of social care provided – one reason for this is that, in the absence in robust evidence, decisions are often made based on a small number of people’s opinions about what constitutes best practice
  • To improve the availability of evidence to inform decisions about care models, quasi-experiments should be run to compare regions with a specific characteristic (e.g., strengths-based assessment or a multi-disciplinary team) to areas that differ on the characteristic of interest

Who would be involved?

  • Researchers with expertise in running quasi-experiments
  • Researchers with expertise running controlled trials
  • Social care commissioners
  • Social care managers
  • Multi-disciplinary social care team
  • Autistic people from the region of interest and the comparison region

Things to consider

  • The selection of comparison groups will be challenging because of the amount of variability across many different factors (e.g., rural vs urban, high SES vs low SES, historical commissioning legacy)
  • Without randomly allocating people to different models of care the interpretation of the results will always be limited

4. Mapping social care in the UK

How much geographical variability is there in the frequency that autistic people diagnosed in adulthood were offered and granted a social care assessment of need?

Why is this helpful?

  • Identify regions where a particularly high and low proportions of people are aware of their right to an assessment and, when appropriate are offered and receive an assessment
  • Facilitate areas that are performing well to share their learning with areas that are doing less well – this could lead to service improvements
  • Demonstrating a high degree of variability, if this is found, could be used to advocate for increased investment for quality improvements in certain areas

How would the research be designed?

  • Review the relevant legislation (Autism Act, 2009; Care Act, 2014; NICE guidelines, 2011) to more fully understand autistic adults’ rights to an assessment of need
  • Conduct an online survey asking autistic adults who were recently diagnosed (e.g., 1-3 years ago) and live in specific regions if they (a) knew they had a right to an assessment of need, (b) if they were offered one, (c) if they received one and (d) if not, why they believe they didn’t
  • Provide an independent assessment to determine the proportion of people who were wrongfully refused an assessment

Who would be involved?

  • Researchers
  • Practitioners
  • Autistic people and their supporters
  • Autism policy experts
  • Independent social workers to conduct assessments
  • Researchers with expertise in survey design and sampling

Things to consider

To understand the results from a study such as this one it would also be necessary to map which services are available in the local areas being surveyed that could impact on results, for example, to know if somebody lives in an area with a specialist national service.

5. Supported employment

What accommodations and supports are needed to facilitate neurodivergent individuals to secure and maintain desired and appropriate employment?

Why is this helpful?

  • To increase employment of autistic adults
  • To reduce policy barriers to employment
  • Identify strategies that successfully make workplaces more accessible to neurodivergent people
  • Offer wider variety of employment opportunities to autistic people
  • Identify barriers to maintaining employment for those who secure a job

How would the research be designed?

  • Survey retired autistic people to ask them to reflect on what they learned during their careers that could help others
  • Review employment policy
  • Seek the input of both employed and unemployed autistic people
  • Write case studies of success stories and case studies about people who struggled to gain and maintain employment
  • Seek input from employers about barriers, best practice, what improves recruitment and retention, the benefits of a diverse workforce
  • Create a resource helping people decide when and how to disclose their diagnosis at work

Who would be involved?

  • Autistic adults and their family members
  • Employers
  • Representatives from the Department for Work and Pensions
  • Researchers
  • Employment trainers and mentors

Things to consider

  • Important to gain input from lawyers who specialise in employment law
  • Important to consider employment experiences of both autistic people with and without learning disabilities

6. Pre- and post-diagnosis support

Establish which pre- and post-diagnostic support needs are not currently being met for autistic adults and develop a package of support to fill the gaps that exist.

Why is this helpful?

  • Build on existing studies and current practice
  • Develop a clear and specific offer of support for adults undergoing diagnostic assessment
  • Further our understanding of what support is acceptable and effective
  • Assess the cost of providing this support in order to provide this information to commissioners

How would the research be designed?

  • Synthesise the literature about pre- and post-diagnostic support
  • Conduct analysis of existing datasets (e.g., an adult autism diagnosis survey)
  • Conduct interviews and focus groups with autistic adults and social care providers about current practice and their desired support
  • Pilot test a novel package of support for adults undergoing the diagnostic process
  • Conduct a feasibility trial of this package of support to assess its acceptability
  • Conduct an economic analysis of models of support

Who would be involved?

  • Social workers
  • Autistic people
  • Public and private health and social care professionals
  • Researchers with quantitative and qualitative expertise
  • Economists
  • Commissioners

Things to consider

International collaboration with stakeholders who have experience of systems in which pre- and post-diagnostic support has been offered for some time now would allow lessons to be learned from other approaches.

7. Process measures and quality of care

How have autistic people diagnosed in adulthood experienced the process of seeking and accessing social care services? Can we learn lessons from these experiences to improve the experience for others diagnosed in adulthood in future?

Why is this useful?

  • Historically autism was under-recognised, this has resulted in generations of autistic people who only receive a diagnosis in adulthood and are more likely to undergo a private assessment.
  • The result of this could be that many of these people are not known to the relevant professionals and so services are not commissioned or provided in a way that meets their needs.
  • Understanding the reasons why people report positive and negative experiences will allow services to improve the experience of accessing services in future.

How would the research be designed?

  • Run a qualitative interview study for autistic people who were diagnosed as adults to ask if they have had an opportunity to speak with any professionals about their needs and individual circumstances
  • Identify barriers and difficulties that are commonly reported and recommend strategies to minimise the occurrence of such barriers in future
  • Establish factors that lead to people giving positive accounts of their experiences and make recommendations about how to emulate these experiences for other people with similar needs

Who would be involved?

  • Experienced qualitative researchers
  • Care commissioners and care staff
  • Autistic people who do not have a learning disability and who received their diagnosis in adulthood
  • Local authority and private care providers
  • Autistic people to consult researchers about study design

Things to consider

  • Interviews should be designed to allow input from people with a wide variety of communication needs
  • Important to include those from groups traditionally under-represented in research

8. Transitions

How effective is transition planning to support the move from child to adult services?

Why is this useful?

  • Understanding transition from child to adult services will help providers understand how best to support people during this period
  • Understanding the true cost of providing this support will allow for more appropriate budget allocation for transition planning
  • Managing transitions well should result in more successful placements which will lead to better outcomes for individuals and reduce the need for people to go through further transitions, which would in turn reduce costs

How would the research be designed?

  • Conduct interviews with autistic people and their family members/carers about their recent experience
  • Ask people if the process was valuable, the extent to which their plan was implemented, what worked and what did not work, whether they had an advocate who helped and if they incurred costs during the process
  • Audit a sample of transition plans and the extent to which they were implemented
  • Compare people’s experiences as described by their interviews and transition plans against NICE guidelines

Who would be involved?

  • Experienced qualitative researchers
  • Autistic people and their family members or carers who have had a recent experience of transitioning from child to adult services
  • Autistic people with and without a learning disability
  • Those who were ineligible for adult services should be included as well as those who were eligible
  • Those who had access to transition plans and those who did not should be included
  • Health economists should also assess the cost implications of good or poor transition planning

Things to consider

Studies about transition planning will need to consider not only whether a transition plan was created or implemented but also other relevant details that could impact the implementation of a plan (e.g., insufficient budget, lack of staff availability, lack of suitable transport or too little time allowed).

9. Low-level support

Can people who have been through preventative intervention(s) become successful, paid peer-supporters for other people in similar circumstances?

Why is this useful?

  • There is a shortage of staff in care settings with specialist autism knowledge and often high turnover so there is a lack of staff consistency
  • Regular monitoring, supervision and learning could boost the quality of peer-support being offered
  • This could boost the self-esteem, employability and resilience of peer-supporters
  • It could reduce dependency on benefits
  • It provides a good opportunity for upskilling through the apprenticeship scheme
  • It achieves aims of the personalisation agenda in the Care Act (2014)
  • It builds a community

How would the research be designed?

  • Review models of low-level support demonstrated to be effective and determine the likelihood that findings from existing research will generalise to autistic people and across settings
  • Conduct a study to assess the feasibility and efficacy of a peer-support intervention at improving the quality of life of autistic adults
  • Peer supporters could be employed through the apprenticeship scheme
  • Enablement approaches, advocacy and befriending services could be assessed in the same way

Who would be involved?

  • Researchers
  • Peer-supporters
  • Autistic people and families
  • Service managers
  • Employment and benefit advisors
  • Commissioners

Things to consider

  • It will be important to build in safeguards to ensure the peer-support is not biased toward interests or challenges of the peer supporter
  • It is important to consider the amount of low-level support that would be needed to generate a real effect

10. Staff training

What methods of delivering staff training and support are most effective at improving the quality of care provided to autistic adults?

Why is this useful?

Improve knowledge among social care staff

Improve social care staff attitudes toward the autistic people they work with
Change practice to accommodate autistic adults’ needs
Reduce the high levels of staff turnover and, in turn, the cost (financial and to the quality of care) of recruiting and training new staff
Increase care staff’s self-efficacy
Change attitudes towards care work away from the idea it is unskilled labour

How would the research be designed?

Conduct a pilot study to assess the effectiveness of training social care staff about best practice when working with autistic adults

Compare the following three conditions: 1) usual practice, 2) autism training and 3) autism training with ongoing learning component
Training could be co-produced with autistic people
The training need not be novel, it could be online or a model of training that already exists – the project would assess the effect it has and if sustained support improves its effectiveness

Who would be involved?

  • All staff in social care settings where autistic adults are cared for
  • Social care managers
  • Autism trainers
  • Qualitative and quantitative researchers

Things to consider

There are many national and regional training initiatives underway but we do not know if they generate any change in practice, studies should be generated that are informative about existing training schemes

11. Self-generated outcome measures

Would a self-generated individual goal setting measure be effective at improving the quality of life of autistic people accessing social care services?

Why is this useful?

  • If successful, this could lead to improved quality of life, mental health and a greater sense of autonomy among autistic adults
  • Reduce the incidence where staff impose inappropriate goals on people

How would the research be designed?

  • Would the development of a system in which goal setting was individualised improve a person’s sense of autonomy, expectation management, rapport with staff working with them and make their goals more realistic?
  • Compare a system using self-generated goals with treatment as usual condition with structured observation, surveys and focus groups
  • Conduct a scoping review of the literature about individualised goal setting

Who would be involved?

  • Qualitative and quantitative researchers
  • Autistic people and family members
  • Social care manager
  • Social care professionals
  • Normalisation process theorists

Things to consider

A study such as this would need to consider and record the possible negative outcomes of engaging in this sort of approach.

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, get in touch with Lorcan Kenny at lorcan.kenny@autistica.org.uk.