Your questions: shaping future autism research Contents Why your priorities for autism research are so valuable 3 Top ten questions for autism research 4 Your other priorities 11 How we got to the top ten 12 What’s next and how you can get involved 14 References 15 Who was involved 16 2 Why your priorities for autism research are so valuable It might seem obvious to ask those living and working with autism what research they want to see happening but traditionally medical research is decided by funders and researchers. We know that these groups have very different ideas of what is important, so in order to get the autism community setting the research agenda, in January 2016, we launched a process to set about defi ning a list of research priorities: a James Lind Alliance Priority Setting Partnership. This independent initiative works in partnership with the National Institute for Health Research (NIHR) by bringing together individuals affected by a condition, carers and clinicians asking them to identify and prioritise the top ten uncertainties, or ‘unanswered questions’, that they agree are most important. The process has a track record of encouraging research funding in the areas identifi ed by the process, and has been carried out previously for other conditions such as asthma, dementia and diabetes. Autism is one of the most poorly funded areas of research (we spend less than £6 per person with autism per year), yet autistic people and their families face outcomes which would be totally unacceptable to other groups. Autism research has a complex history and given the broad nature of the autism spectrum and the diverse views within To fi nd out more visit the project web page: the community, fi nding agreement across such a mixed group www.autistica.org.uk/top10 has always been challenging. With the successful consensus that this process has produced, UK organisations and funders can work together to form a national strategy that really responds to the needs of autistic people and their families, so that research has the greatest impact. This report explains the process that was followed to reach the agreed list of priorities, who was involved to make sure that it was made as inclusive and as independent as possible, and what’s behind each of the questions that you chose. 3 Top ten questions for autism research Which interventions improve mental health or reduce mental health problems in people with 1 autism? How should mental health interventions be adapted for the needs of people with autism? Which interventions are effective in the development of communication/language 2 skills in autism? 3 What are the most effective ways to support/provide social care for autistic adults? 4 Which interventions reduce anxiety in autistic people? Which environments/supports are most appropriate in terms of achieving the best 5 education/ life/social skills outcomes in autistic people? How can parents and family members be supported/educated to care for and better 6 understand an autistic relative? How can autism diagnostic criteria be made more relevant for the adult population? 7 And how do we ensure that autistic adults are appropriately diagnosed? How can we encourage employers to apply person-centred interventions and support 8 to help autistic people maximise their potential and performance in the workplace? 9 How can sensory processing in autism be better understood? How should service delivery for autistic people be improved and adapted in 10 order to meet their needs? 4 Which interventions improve mental health or reduce mental 1 health problems in people with autism? How should mental health interventions be adapted for the needs of people with autism? The issue Mental health problems have a devastating effect on an individual’s quality of life. 70% of autistic children have a mental health problem1 with 79% of autistic adults meeting criteria for a mental health problem (for example, bipolar disorder, depression, anxiety, obsessive compulsive disorder, schizophrenia)2 at some point during adulthood. Data from Sweden indicates that autistic adults with no intellectual disability are over nine times more likely to kill themselves than the general population,3 with data from the UK suggesting that two thirds experience suicidal thoughts.4 What we know Research suggests a genetic link between autism and mental The National Institute for Health and Care Excellence health problems, but mental health problems may also be (NICE) aims to improve health and social care through triggered or infl uenced by environmental factors, such as evidence-based guidance. NICE recognises that some of social exclusion, bullying, and experiencing stigma. Emerging these interventions could be benefi cial for people with evidence suggests suicidal thoughts and behaviours may be autism but stresses the need for further research different in autistic people.4 to address the following questions: NICE recommendations for research: “I feel that the anxiety and Adults What is the clinical- and cost-effectiveness of selective depression I have suffered over serotonin reuptake inhibitors (SSRIs) for the treatment of the years is the result of my moderate and severe depression in adults with autism? autistic mind having to cope What is the clinical- and cost-effectiveness of facilitated self-help for the treatment of mild anxiety and with a neurotypical world.” depressive disorders in adults with autism? (Currently being funded by the NIHR). Jon Adams, autistic adult who attended the fi nal priority setting workshop What is the clinical- and cost-effectiveness of Cognitive Behavioural Therapy (CBT) for the treatment of moderate and severe anxiety disorders in adults with autism? How research can help Children We are starting to know what mental health treatments are effective for people without autism. Currently there are no What is the comparative clinical- and cost-effectiveness autism-specifi c treatments, as research has done very little so of pharmacological and psychosocial interventions far to address mental health and autism together. There are a for anxiety disorders in children and young people number of approaches which may be benefi cial, such as with autism? anti-depressants, cognitive behavioural therapy, mindfulness and dialectical behavioural therapy, but these all need further research.5, 6 5 Which interventions are effective in the development of 2 communication/language skills in autism? The issue Autism is primarily a disability that affects how a person Language Therapists have highlighted the use of parent-led, communicates with and relates to other people and the teacher-led (often behavioural interventions which are shared environment around them. Difficulties with communication between teachers and parents), and computer-based and language affect autistic people’s ability to do everyday interventions as potentially promising avenues.10 Social skills things. One in four people with autism can speak few or no groups seem to be helpful for many, but further research is words, whilst many other autistic people find it hard to apply needed to know how effective they are for different people and adapt their communication skills to different and how effectively the skills learnt in the group can be environments and situations.8 We also know that language expanded to real-world situations.11 ability at five years old is a good indicator of long-term outcomes, with higher ability also reducing the likelihood of How research can help challenging behaviours. Research is needed to understand the effectiveness of interventions which are currently in use, and to develop What we know new and innovative interventions to give autistic people There are a wide range of approaches aiming to improve the communication skills they require to navigate the communication and language skills in autism. AAC (Alterative world and live as independently as possible. and Augmentative Communication) is one such approach – this includes PECS (Picture Exchanges Communication NICE recommendations for research: System) where cards with images are used to communicate. What is the clinical- and cost-effectiveness of augmentative There is some evidence to support the use of PECS, and communication devices for adults with autism? similar tech-based tools.9 The Royal College of Speech and What are the most effective ways to 3 support/provide social care for autistic adults? The issue What we know Social care services provide community-based support for There is a significant lack of investment in social care autistic people and their families, and include advocacy, research. It seems clear that the recent moves this century residential care or supported living, short breaks and social from institutionalised care to supported living have had a groups. Although there is limited data available (particularly substantial and positive effect on the quality of life of autistic in ageing populations and those without learning disability), people.16 There is also some research looking at structured a survey from the National Autistic Society suggests that a behavioural programmes, generally with the aim of reducing very high proportion of autistic adults live with their parents challenging behaviour, but these studies are lacking in scale (38%) or in residential care or supported living (17%).12 and quality, and don’t reflect the outcomes valued by autistic people.17, 18 Respite care is also included in social care The Winterbourne View report found that people with research. The limited research in this area finds positive learning disability and/or autism are admitted to inpatient impacts on parental wellbeing.19, 20 settings unnecessarily or for reasons which could have been avoided.13 The report also found that many are often placed How research can help in inappropriate settings, which are distant from their home town and family. In addition, inappropriately high levels of A culture of research is critical for ensuring that social care anti-psychotic use are also reported in such settings.14 This is practices meet high standards and focus on clear outcomes.