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Research
'Research funding bodies should encourage further research into autistic spectrum disorders.
A working group should be convened to consider the practicalities of establishing a database of people with ASD in Scotland.'
What has happened
The Medical Research Council is focusing on research on bio-medical issues. The Chief Scientist Office within the Scottish Executive takes the lead in working in collaboration with the Medical Research Council on a number of ASD specific pieces of research. They are currently in the midst of discussions with several groups of scientists about autism research proposals.
Studies into ASD that the Chief Scientist Office has funded to date include:
- Study on potential for interventions using fatty acid supplements
- Pilot study of fMRI to image imitation in autism spectrum disorders
- Molecular analysis of breakpoint regions of a de novo reciprocal translocation associated with autism
- Prosodic skills in children with autism
- An HPLC and MS analysis of the urines of autistic and control children to investigate the validity or otherwise of dietary intervention as a treatment
The ASD Reference Group agreed to fund a retrospective study of a consecutive series of those who have been diagnosed at the Scottish Centre for Autism. This study aimed to capture the developmental history and symptoms of 300 children to better understand the variability within a group of children who receive a diagnosis and the boundary with those children who do not. The study also aims to identify variables which may predict the need for a diagnostic review in a small minority of cases. A report on the study will be available in summer 2006.
The Scottish Executive held a conference in November 2005 to focus on developments and research in relation to Health and Autism. The aim of the conference was to disseminate research findings to health and social care professionals so that they could consider and apply these in their own localities where they thought it appropriate to do so.
The conference programme included psycho-social interventions and the development of cognitive behaviour therapy; dietary interventions; pharmacological treatments; genetic counselling; improved assessment and diagnosis and the individualised treatment of medical disorders often associated with autism. A full conference report will be disseminated widely, to continue the dialogue about health needs in Autism in Scotland and to focus on contributing to a broader perspective on how we deliver interventions.
The establishment of a database of people with ASD in Scotland is being taking forward under the eSay project. Further details are in the Matching resources to need section of this report.
What still needs to happen
A number of recent reports, including Mapping autism research and the 2001 Medical Research Council Review, identify some areas of weakness in autism research that require expansion and development in terms of topic of study, enhancing multidisciplinary collaboration and translating research findings into practice. The draft SIGN guideline issued for consultation last year also identified areas where research is under-developed.
A UK wide Autism Research Co-ordination Group ( ARCG) has been established by the Department for Education and Skills, to provide a framework to enable greater co-ordination of autism research activity in the UK, which should lead to more informed policy development in areas affecting people with autism. It has a number of aims, including a particular focus in autism research funding on identified gaps such as biomedical research and research on interventions (especially in adults). The Scottish Executive ASD reference group is represented on the ARCG.
In addition, the Scottish Autism Research Group provides a platform for sharing research-in-progress. It is an interdisciplinary group of academic researchers, postgraduate students and practitioners involved in research into autistic spectrum disorders. The Group provides networking opportunities and promotes a coherent programme of scientific research in autism.
At local and national level, policy development and service commissioning needs to be informed by research. Research funding should be directed to areas where there are clear gaps in evidence to inform policy development.
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