AUTISTIC SPECTRUM DISORDER REFERENCE GROUP
NOTE OF MEETING HELD 6 JUNE 2005
Present:
Ken Aitken
Clare Brogan
Caroline Brown
Jane Cantrell
Paul Dickinson
Aline-Wendy Dunlop
Bette Francis
Iain McClure
Jane Hook
John MacDonald
Stella MacDonald
Jean MacLellan
Val Murray
Shona Pittillo
Frances Scott
Isobel Sutherland
Dorothy Warren
Polly Wright
Apologies: Carol Ainslie
John Cameron
Ian Kerr
Jane Neil-Maclachlan
Michael McCue
Robert McKay
Shabnum Mustapha
Val Sellars
Minutes of March meeting
The minutes of the March meeting were agreed.
Matters arising
Group Membership
Members were informed that Anne O’Hare had reluctantly tendered her
resignation from the group. It was agreed that she should be
approached to nominate a replacement paediatrician. The group
discussed additional representation from primary care services.
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 Dorothy to approach Anne O’Hare about nominating another
paediatrician for the group.
 Jane Cantrell to email two members of a steering group involved in
a project on developing a CPD resource for primary care
professionals and GPS to see if one of them is interested in joining
the reference group.
 Polly Wright to approach ADSW for a children’s services
representative.
Lothian Adult Autism Support Centre
The Lothian One Stop Shop based at Number 6, Melville Crescent,
Edinburgh is to be officially opened by the Deputy Health Minister on
June 22nd. The service is provided by Autism Initiatives and Richard
Ibbitson is the lead. He was appointed Director of Operations (Scotland)
for Autism Initiatives in May.
National Service Network
Aline Wendy Dunlop reported that progress had been slower than
hoped. However, practical arrangements are developing well and a
secretarial appointment has been made. Unfortunately they may need to
advertise again for the network manager and the management and
network development manager as the University failed to mention ASD
in the job advert. The web page will shortly be finalised.
HMIE
Shona Pittillo reported that inspection plans were progressing and that
the inspection team had been widened to include a speech and
language therapist and a social worker. Next meeting is scheduled for
September and Shona agreed to keep members informed. The group
agreed it would be useful if the HMIE team could be persuaded to look
at the training of teachers, not forgetting the important role that
auxiliaries play. The training leaflet will be of great help. HMIE must
ensure that children receive the support they need. Jane Hook raised
the issue of training of auxiliaries.
 Bette to email training leaflet to members.
 Bette to attend September HMIE meeting.
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 Shona to email link to literature review of educational approaches
to Dorothy for distribution to members.
Diagnosis quality standard
The quality diagnostic service standard for children and adults with
autistic spectrum disorders was issued to a wide range of professionals
in May. Recipients were strongly encouraged to adopt the standard in
multi-disciplinary teams in their areas. The ultimate question is how it
relates to SIGN. The national meeting on assessment, diagnosis and
clinical interventions for children and young people with ASD for the
SIGN guideline is October 3rd.The venue is the Royal College of
Physicians of Edinburgh. The guideline will be published in draft two
weeks before and will be placed on the SIGN website. Iain advised
members that there is a maximum of 300 places for the national day
available. Places for carers are free.
 Dorothy to find out sign website address for members
http://sign.ac.uk/
Information sub group
Alison Leask’s work on the directory of individuals and teams
undertaking assessment and diagnosis of ASD in Scotland is
progressing. It is the intention to extend Alison’s work to visit diagnosis
centres and networks and clarify what is actually happening on the
ground post diagnosis. The Information Group has decided to hold a
one-day information event for professionals and Robert Mackay and Val
Murray have put together a draft programme. Three themes have been
suggested – diagnosis, training and projects.
 Dorothy to email NAS post diagnostic information pack to group in
addition to those who have already received it. Individuals to email
comments directly to Nicola Gray, NAS Post Diagnostic Officer
Nicola.gray@nas.co.uk
Training leaflet
 Bette to email skeleton training leaflet to group for comment before
the August meeting.
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Advocacy
Unfortunately Shabnum Mustapha was unable to attend the meeting to
give an update to the group. She is currently looking at a draft report for
The same as you? National Implementation sub group on advocacy, to
see where autism references need to be made stronger. Reference
Group members will see a draft report before publication. The advocacy
sub group has representation from the Advocacy Safeguards Agency
and the Scottish Independent Advocacy Alliance, and both will look at
addressing the needs of people with ASD in their future work.
Health conference
Bette informed the group that the proposed date for the health
conference is Thursday 24 November. The venue is Aviemore.
Proposed speakers are Mike Rutter and Tony Bailey and two family
carers. Steve Law and Bob Wallie have been approached to speak on
mental health issues (research/neuro scanning and mental
health/psychological treatments). Other subjects to be covered will
include immunology, dietary factors,
psycho-social interventions,
genetics and drug treatments. It was agreed that most of the issues
would be covered in parallel sessions and delegates would be able to
select 2 sessions.
The group agreed that the event is not an opportunity for people to
disseminate their own fliers and promote their own campaigns. People
with inappropriate behaviour will be asked to leave the conference.
The group discussed the two statements suggested by Aline-Wendy as
a means of focussing the aim of the conference:
‘Opening the dialogue about health needs in Scotland’.
‘The aim of the conference is to review key knowledge about and
approaches to health in autism, in order to start a collaborative process
of meeting the needs of people with autism in Scotland better.’
The group agreed the short statement effectively captures the essence
of the proposed conference.
 Dorothy to circulate conference flier in advance of August meeting
for approval. To be finalised on 15th.
 Dorothy/Bette to ensure that speakers are clear on audience and
use appropriate language
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Care pathway
Carolyn Brown explained what care pathways are, what purposes they
should serve, the outcomes they should achieve, what they might look
like and how local authorities might be supported to implement/maintain
them. The main thrust is evidence of good practice and challenging
barriers which leads onto training issues.
Tier 4 in Scotland
Iain McClure spoke to members about what Scotland’s tier 4 ASD
service for children and adolescents should consist of and how it might
develop over the next few years. Members agreed that the NAPC
recommended tier 4 service (assessment and treatment) should be
made available , at some level, in Scotland by 2010 so as to meet the
needs of Scotland’s relatively small, but geographically dispersed
population. It was also agreed that that the Reference Group should
examine how the role of statutory services could be increased to support
and complement charitable services as regards tier 4 ASD intervention
and management, particularly relating to mental health services. Iain
asked members to consider the development of a statutory funded
‘National Autism Institute of Scotland’ (NAIS) which would :
1. Coordinate a virtual, national tier 4 ASD assessment service.
2. Coordinate a virtual, national tier 4 ASD intervention and management
service.
3. Coordinate, instigate and develop research on ASD related areas,
using the resources of the various statutory services and academic
centres available to the virtual network.
Iain proposed that this concept should incorporate an all age, all
cognitive ability service for ASD. Members agree this may be worth
pursuing, although some existing developments already address part of
this agenda.
Respite care
Isobel Sutherland spoke to members about the steering group set up to
support the provision of a wider range of respite and short break
services. The purpose of the group is to review the current range of
services and scope what services people want. There are examples of
good respite care and there is a need to make other services ASD
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friendly. Respite sustains families and avoids crises. However, it would
benefit from a national framework, focus and some funding to develop
the good practice. The group will also be speaking to the Autism
Alliance on June 11 in Alloa. Members agreed in principle that a small
amount of funding should be considered for further work in this area
drawing out good practice and setting out what autism friendly services
should look like.
 Aline-Wendy Dunlop to talk to Isobel and John about the concept
of respite and how the national service network might help.
 Isobel to provide SE with a costed proposal.
Proposed Vulnerable Adults protection measures
A consultation paper will issue in the near future.
deferred to next meeting.
Discussion to be
AOB
Members were handed copies of a letter from Jane Neil McLachlan
outlining areas not yet addressed by the group. Specific issues to be
considered included:
 What exactly are the residential, educational, employment and
other care needs of adults with ASD and a learning disability?
 What exactly are the residential, educational, employment and
other care needs of adults with ASD but without a learning
disability?
 Who should meet these needs?
 Where can local authorities find reliable information regarding all
this?
 How can parents/carers/partners be best supported?
 Who should be responsible?
The group needs to consider what other steps will deliver change on the
ground, alongside the work of NCAS which needs time to bed in. For
future discussion on making a difference, members agreed to discuss
capacity building throughout the system, empowerment and training for
families, and influencing improvement through existing structures.
The main item for the next agenda will be to draw up a matrix that takes
account of: the Kerr report, PHIS, NAPC, CHPs and MCNs, and care
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pathways. This could lead to the development of a ‘toolkit’, identify what
someone with ASD can expect from a service, and look at ways to check
what services people are getting. There also needs to be some
examination of how costs relate to quality, and a demonstration of what
is money well spent.
Date of future meetings
Monday 15 August, 10.00am to 4pm, St Andrews House, Edinburgh
Monday 17 October,10.00am to 4pm, St Andrews House, Edinburgh
Thurs 15 December,10.00am to 4pm, St Andrews House, Edinburgh
Monday 27 February,10.00am to 4pm,St Andrews House, Edinburgh
Scottish Executive
July 2005
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