To partners and supporters of the autism PSP,
As the year comes to a close, I want to update you on Autistica’s progress with the Priority Setting Partnership (PSP) for autism, and our plans going forward.
Since the announcement of the Top Ten questions and the publication of the report in May we have been working hard to promote the questions, raise money to address some of them ourselves, and meet with other organisations to take on questions that fall outside Autistica's remit.
We spoke around the UK at the three Autism Shows, the Autism Europe Congress and the US Interagency Autism Coordinating Committee to promote the Top Ten, and we continue to refer to the Top Ten in grant applications.
Here is the progress made so far on each of the questions:
1. Which interventions improve mental health or reduce mental health problems in autistic people? How should mental health interventions be adapted for the needs of autistic people?
Autistica have launched a call for proposals to find at least two new cutting-edge research projects to trial mental health interventions in autism. This is still open for applications, so do share on your social media channels and with any researchers that you know.
This call is in addition to our five pre-existing mental health projects at King's College and Warwick,and our newest study at Cambridge. We're looking at both the underlying causes of mental health problems in autism, and how we can best treat and support those affected.
2. Which interventions are effective in the development of communication/language skills in autism?
We plan to announce a call for proposals on this in 2017.
3. What are the most effective ways to support/provide social care for autistic adults?
We’ve been doing some scoping work with the NIHR School for Social Care. We hope to commission a report in this area in 2017 then host a large-scale meeting with all key players in this area in 2018, to develop a coherent research strategy in this very under-researched field.
4. Which interventions reduce anxiety in autistic people?
Harnessing our Charity of the Year partnership with Deutsche Bank, we hosted a worldwide 24-hour hackathon to develop an anxiety app prototype. This turned a paper based anxiety tool developed at King’s College into an interactive, mobile app for use by children and young people with autism. See a short video of the event here. We are now speaking to funders to develop this into a product that we can eventually roll out throughout the UK.
We are also peer-reviewing a new intervention study in this area on an anxiety in autistic adults.
5. Which environments/supports are most appropriate in terms of achieving the best education/ life/ social skills outcomes in autistic people?
We are talking to service organisations about ways in which research can be integrated into practice to answer these questions.
6. How can parents and family members be supported/educated to care for and better understand an autistic relative?
In October Autistica launched the ‘Best Start in Life’ programme - two early years research projects supporting families with the management of issues such as sleep and eating and a third study to reduce the stigma and stress associated with autism. These therapies will help us to understand the best ways to support families soon after diagnosis
7. How can autism diagnostic criteria be made more relevant for the adult population? And how do we ensure that autistic adults are appropriately diagnosed?
Autistica has partnered with Newcastle University to support The Autistica Research Centre for Ageing with Autism, and back in March 2015 we launched a 30 month project working in this area. The study aims to identify what methods and measures are the most efficient and effective for diagnosing autism in adults from across the age and ability range, and across NHS services. The Newcastle team will identify the most promising tools and practices in use in the UK for diagnosing adults with autism, and will also work on developing or adapting new diagnostic methods and measures. We have also highlighted this issue in our recent trip to Washington DC.
8. How can we encourage employers to apply person-centred interventions & support to help autistic people maximise their potential and performance in the workplace?
Through our Deutsche Bank partnership and with the support of Ambitious About Autism, we have launched a series of autistic graduate internships. We will be weaving research into this so that we can measure outcomes and will promote the scheme widely with other companies to encourage them to follow Deutsche Bank’s lead of making the workplace inclusive and supportive for autistic workers.
9. How can sensory processing in autism be better understood?
We have discussed this area with the Medical Research Council who have funded research in this area previously.
10. How should service delivery for autistic people be improved and adapted in order to meet their needs?
We are working with policymakers to encourage them to build research into service delivery, specifically with a focus on mortality in autism (following the publication of our report earlier this year)
Please let us know if you have any funder or researcher contacts that could help us to address some of the questions in the Top Ten, or in the extended list of 25 questions. If you or anyone you know is embarking upon research in any of these areas, do get in touch so that we can track progress.
In 2017 we will be launching a national initiative to bring together researchers around the country to address the greatest needs. This will be based on the results of the PSP and our recent work around early mortality in autism. We look forward to sharing this with you next year.
In the meantime, I’d like to wish you a very Merry Christmas.
M: 07716 426896 T: 0203 857 4348
NB. Materials used during the autism PSP are now on the JLA site: http://www.jla.nihr.ac.uk/priority-setting-partnerships/autism/