End of Award Reports
ESRC and Welsh Government Funded Film: The Birthday Party
The Birthday Party: How we made the film
The idea for this film came about following the Welsh Government’s consultation with autistic individuals, parents and carers: http://www.asdinfowales.co.uk/resource/ASD-Consultation-Summary-Report-2015.pdf. The report identified gaps in provision and the need for increased awareness and understanding of autism by professionals.
The signs of autism described in this training film were based on individual observations and the experiences of hundreds of parents, carers and their children. These observations and experiences were systematically recorded in clinical work and research over decades using the Diagnostic Interview for Social and Communication Disorders.
A group of us (Sue Leekam, Sarah Carrington and Judith Gould) had carried out a research study to identify a smaller set of signposting items (read the article here http://www.sciencedirect.com/science/article/pii/S1750946714002347). The Economic and Social Research Council and Welsh Government gave support to accelerate the impact of this research and raise awareness of the signs of autism.
To develop the film content, we focused on the signs from our signposting research study (see above) and the signs from The UK’s National Institute for Clinical Excellence (NICE) guidance on autism: https://www.nice.org.uk/guidance/cg128/chapter/Appendix-C-Signs-and-symptoms-of-possible-autism.
The work was a partnership with Welsh Government colleague Johanna Manikiza and the National ASD Development Team, extending previous joint work on a set of SIGNS posters for GP surgeries in Wales. Download posters here (scroll down) http://asdinfowales.co.uk/recognise-asd-child/ which you can use with the film. The ASD Development team have created a great information and film resource-base: http://www.asdinfowales.co.uk/ and they led the film production work.
To illustrate how the signs of autism present in children, we created three fictitious film characters for the film, Amy, Jack and Rhys. All three children have the signs of autism and yet their autism signs show themselves in very different ways. In the film there was not was not time to show every possible sign and its varied presentation. We wanted to show the most common signposting items. But we also wanted to show signs that may often get missed.
We consulted with autistic individuals before filming to gather their views. Their advice was that professionals should remember that children can show signs in different ways and that not all signs need to be obvious in order for autism to be flagged up. The signs that you see across every individual can be different and you may need to look particularly carefully to avoid missing the signs in girls. In your own everyday work and life, remember that every individual is unique. Remember that the film shows only some examples of how the signs present themselves. There is much more variation.
Also remember that there is a recognisable pattern in which these signs present together as described in the film. Just having any one or more specific behaviours doesn’t mean a child has autism spectrum disorder: the behaviours in the film are seen in children without autism as well. But when these behaviours are seen together in a distinctive and enduring pattern, it helps for professionals to be aware of this pattern of SIGNS.
In the film we have had the opportunity to focus on targeting awareness of the signs. What about other training for professionals to help them develop strategies to support children and help them to reach their potential? Although the remit for the film was restricted to awareness of the SIGNS, information on support and management is available. We give links to these websites: http://www.asdinfowales.co.uk/ https://www.nice.org.uk/guidance/cg170
Sue Leekam, Wales Autism Research Centre, Cardiff University, Johanna Manikiza, National ASD Development Team, Judith Gould, Lorna Wing Centre, Bromley,Sarah Carrington, Psychology, Aston University.
Acknowledgements: We are very grateful to Sarah Barrett, Chris Ramsden, Sarah Bunce, Jamie Williams, Nicky Hall, Sue Sheppard, Juli Crocombe and Shakira Drayton who provided valuable support and feedback for the development of the film and its distribution to the community.
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Visual attention control in individuals with neurodevelopmental disorders
We recently completed a feasibility study designed to develop a novel training method to improve visual attention in children with ASD and children with Rett syndrome. The research was sponsored by the Wellcome Trust in the UK and was a collaboration between researchers in Cardiff University’s School of Psychology (Dr Georgie Powell and Prof Sue Leekam), Optometry (Prof Jon Erichsen) and Medical Genetics (Prof Angus Clarke) and the MRC Cognition and Brain Sciences Unit at Cambridge University (Dr Sam Wass). The research was carried out in schools in South Wales. You can read a summary of the results here ISSF Seedcorn End of Award Report .
Report on DISCO Abbreviated Training
We’ve been working with the NHS and Welsh Government to deliver training on the new diagnostic tool DISCO-Abbreviated, which our research team has designed and developed. Here is a report of the training course and the follow up evaluation on its impact in practice. Summary of DISCO Abb feedback – FINAL 22nd August
The overarching aim of this project was to address a need for coordination of knowledge across three key communities of research, policy and practice, all of which have influence in the area of Autism Spectrum Disorder. The project created and launched the Autism Research Policy Practice Hub (www.autismrpphub.org) – a coordinated online and offline platform for co-production of knowledge in these three communities. This project was funded by the Welsh Government and the Economic and Social Research Council. Here are three end of award reports. Evaluation Report July 2014 RPP Hub; Key Findings report July 2014 ; RPP Hub Impact narrative report
Measuring Autism Spectrum Disorder: Diagnostic criteria and associated features. Rachel completed her MSc and Phd from 2009-2014. Her research was funded by a CASE studentship from the Economic and Social Research Council in partnership with the National Autistic Society.
Repetitive behaviours, anxiety and sensory problems in children with autism and correlates of anxiety in their parents. Mirko finished his Phd in 2014. His research project was funded by the National Institute for Social Care and Health Research and the Welsh Government.
Autism Speaks Trailblazer Awards are designed to support novel ‘out of the box’ research into aspects of autism. This award was granted to explore a potential tool for managing the disabling over-reaction to sound experienced by some people with autism it was called “Tuning out anxiety”.
Funding was awarded for the development of methods of diagnostic practice with the goal of enhancing evidence-based practice in the diagnosis of Autism Spectrum Disorder (ASD). The work aimed to provide the groundwork for training and skill development in diagnostic work to support the optimal delivery of multidisciplinary team working practice.
It has been hypothesised that anxiety and sensory problems are the triggers for repetitive behaviours, however, this hypothesis has not been formally tested before. This PhD project provided an original contribution to the literature on repetitive behaviours, sensory problems and anxiety in ASD. This research project was funded by the National Institute for Social Care and Health Research and the Welsh Government.
This project was directed towards increasing understanding of scientific research in ASD in non-academic communities. It had three main objectives: (1) to promote knowledge sharing between researchers and practitioners through the development of a new web-based discussion forum (Project partner- the charity Autism Cymru). (2) to increase research awareness about interventions in practitioners and families through the provision of research-aware leaflets, a research toolkit and workshops (Project partners – charities National Autistic Society and Waterloo Foundation) and (3) to bring the research ‘laboratory’ closer to people’s lives, through engagement activities and communication packages.
Intervention for Repetitive behaviours and Anxiety Project Report September 2012 – Baily Thomas Charitable Fund
The aim of the research was to take a first step towards developing an intervention to reduce repetitive behaviours and anxiety in children with autism spectrum disorders (ASD). Sixty families participated in a questionnaire study that first identified in detail the link between repetitive behaviours and anxiety. Results showed that only certain types of repetitive behaviours were linked to children’s anxiety, and this link was explained by particular sensory symptoms (e.g. hypersensitivity). Two parents and their children also took part in a 12-session weekly intervention. The intervention (Intensive Interaction) did not show week-by-week changes in targeted behaviours but provided new data on the effect of this intervention.
This pilot project begins the development phase of a dedicated database for Autism Spectrum Disorders (ASD), initially within the 6 counties of Betsi Cadwaladr University Health Board (BCUHB), with the potential to evolve into a National ASD Register for Wales. It was funded by matched funding from the Welsh Government & Betsi Cadwaladr University Health Board’s Charitable Funds.
This project studied repetitive behaviours in children aged 6 years old as part of a longitudinal study.
Report for the Welsh Government on Methods of Diagnostic Practice and Clinicians’ views of service effectiveness.