AUTISTIC SPECTRUM DISORDER REFERENCE GROUP
DIAGNOSIS SUB GROUP
Meeting 30 September 2003 - Action points
Present
Martin Abramson, National Autistic Society, Daldorch School
John Cameron, Clinical Director of Psychology, Gartnavel Royal Hospital
Bette Francis, Community Care Division, Scottish Executive
Jean MacLellan, Community Care Division, Scottish Executive
Jane Neil-McLachlan, Adult Autism Co-ordinator, Lothian Primary Care NHS Trust
Val Murray, Consultant Psychiatrist, Scottish Centre for Autism, Yorkhill
Shabnum Mustapha, National Autistic Society
Apologies
Caroline Brown, Deputy Principal Psychologist, Fife Education Dept.
Harden Carter, CPHM, Lothian NHS Board
Paul Dickinson, Clinical Child Psychologist, New Craigs Hospital, Inverness
Ronnie Jarvis, Area Principal Psychologist, Glasgow Psychological Services
Tommy Mackay, Scottish Society for Autism
Val Sellars, Deputy Director, Scottish Centre of Autism, Yorkhill Hospital
Discussion
Jean Maclellan gave a brief update on the work of the training sub-group, which has
clear links with recommendations on diagnosis. The training group has now met
twice and is looking at qualifying/post-qualifying and awareness training. An initial
meeting has been held with SQA to discuss SVQs. We aim to roll out the Autism
Argyll information pack nationally.
Collection of clinical data
Val Murray is keen to ascertain how much interest there is in collecting clinical data
on ASD, agreeing what should be collected, and identifying ways of sharing relevant
information. It would be useful to discuss what data clinicians are currently
recording, to compare with Yorkhill.
This may include:
 Basic demographic data
 Anonymised data
 Response times
 Referral sources –reason (eg second opinion)
 Characteristics of young person referred
 Medical information (possibly also genetic)
Val is keen to take forward some research in Yorkhill, but would need resources to
develop this. The work would involve identifying key indicators as a baseline, and
looking at the characteristics of interventions. A longitudinal study of ASD in
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Scotland would be useful. Information in Yorkhill has been recorded by a team that
has been in place for several years and is aware of the shift in approach to
diagnosis. A retrospective study could identify items of information for coding.
Members discussed the possibility of a small scale exercise, looking at around 150
case notes, checking how well information is recorded.
Action points:
 Val to prepare a short paper outlining what could be delivered by
retrospective and prospective elements of such a study.
 SE to share information about SCLD database with members
Professional study day on diagnosis
SE has commissioned Scottish Health Services Centre to organise the event in
central Scotland in February 2004, over 2 days midweek. It is hoped that around 70
delegates will attend. Members should forward nominations to SE as soon as
possible. Invites will be widened to include non-medical front-line professionals
diagnosing people with ASD.
Aim of event is to determine what will make diagnosis better and more consistent
across Scotland.
Suggestions for programme included:
 Keynote address –possibly someone with ASD to describe what diagnosis
means for them. Alternative is video of previously prepared interview with
individual.
 Prototypes – presentation of 4 (specialist team, MCN, Community Autism
team and individual practitioner). Possible use of voting technology to check
delegates’ current practice and agree 5th prototype.
 Dilemmas in current practice
 Open space discussion, with experienced facilitator
 Workshops- suggestions could be sought from delegates well in advance of
event
 Data collection and the need for a national case register
 Networking
 How/what does diagnosis deliver
 Development of MCNs
 Issues and solutions
 Diagnosis and needs
Next meeting to be used to finalise programme and identify speakers.
Care pathways
Members at the previous meeting agreed to consider drawing up a care pathway
that SE could endorse. Examples of existing care pathways had been provided for
Glasgow and Edinburgh, and material from Fife was forthcoming. Both PHIS and
NIASA reports set out care pathways, the latter with timescales. Members agreed
timescales should be set out, and agreeing these could possibly be one of the
outputs of the study day.
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It was felt that whilst care pathways can be simple, the main issue for success is
governance of the system. The aim of any guidelines has to improve practice and
identify gaps.
A SIGN guideline would be useful and would provide an alternative to SE guidance.
Action point: obtain updated information on progress with Lomond and Argyll
application for ASD SIGN guideline. SE does not have a remit in pursuing SIGN
guidelines.
A statement of good practice could set out the aims of identifying
 How is diagnosis done?
 How is success in meeting needs measured?
A built in audit would have resources attached as part of the financial plan. This
would also help influence bodies such as QIS and SWSI in their inspection role.
Action point: consider as topic for study day.
Next meeting
 Finalise programme/speakers for study day.
 Discuss Val Murray’s proposals for research.
Date to be finalised based on maximum availability.
Scottish Executive
October 2003
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