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ANNEX F: National developments in autism spectrum disorder services

In consultation with the national Autism Spectrum Disorder Reference ( ASD) Group the Scottish Government has funded a number of innovative projects and pilots to inform service development across Scotland. These developments and a number of additional national models are detailed in this Annex.

Project 1: Scottish Autism Service Network ( SASN)

Aims of project:

The Scottish Autism Network aims to provide the following:

• collation and provision of information on good practice and resources
• a structure for sharing advice and receiving support
• sourcing and making available links to good autism spectrum disorders materials, events and training, information and publications
• dissemination and publication of impartial autism spectrum disorders related information
• communicating information regarding related research
• conferences and the dissemination of regular newsletters
• routing and referring queries to local professionals, organisations and services
• facilitating autism networks and supporting those that already exist
• developing on-line forums for networking and sharing information about autism spectrum disorders

Delivery of project:

The National Centre for Autism Studies ( NCAS) at the University of Strathclyde were granted funding from the then Scottish Executive in September 2005 to develop SASN. SASN will continue from January 2008 with funding from other sources. The SASN office is based in Glasgow but covers the whole of Scotland.

The original remit of the project was to develop a Scottish Autism Service Network to provide:

• a hub of direction to services to people affected by Autism Spectrum Disorders ( ASD),
• a structure for sharing advice and receiving emotional support
• an internet presence for information provision
• consultation with users, families and professionals towards responsive development of the network to meet what the ASDcommunity in Scotland needs.
• Outcomes for people with ASD:

The primary outcome for individuals on the autism spectrum and their family members would be the increased capacity of practitioners, organisations and services in their knowledge, awareness and understanding of professional practice, local and national contacts, and most specifically increased collaborative working.

The Network provides a multi-agency and cross-professional approach in improving services to people with ASD and their families across Scotland and has been successful in establishing a number of networks across Scotland on a cross-cutting basis involving disciplines in education, health, social work and the third sector. The increased capacity of these professionals increases the likelihood of successful inclusion (educationally and lifelong) and provision of appropriate and good practice for children and adults with ASD into mainstream services.

Outcomes for local authorities and health boards:

The Scottish Autism Service Network is seen to be unique and at the leading edge of inter-professional development in this field as there is no known similar national autism specific network within Europe. Its unique, inclusive, innovative and cross cutting approach is an enormous strength, and feeds its capacity to support a wide range of professionals across all local authorities and health boards in Scotland and reduce the isolation of those who are geographically constrained.

The Network provides practitioners within local authorities and health boards an opportunity to tap into a wide ranging yet specialist source of knowledge and information that is not commonly otherwise readily available within local authorities. Sector and geographically specific networking opportunities are available to those working in local authorities and health boards, both physically and virtually. The benefits of this and the hub of information provided are on two levels. Firstly, practitioners are informed in their professional understanding, practice, and knowledge and secondly the capacity of services is increased and work toward strategic objectives is supported.

Project 2: Autism Resource Centre ( ARC), Glasgow

Aims of project:

The ARC has been set up with two broad aims:

1) To provide expertise, information and training in order to build capacity within mainstream agencies and with families and carers, so as to enable them to provide effective support and service provision for individuals with ASD.

2) To improve the social, physical and emotional well being of adults with ASD and build their capacity to live full and independent lives in the community.

Delivery of Project:

Adult Autism Service - diagnosis and assessment (via weekly clinics); individual and group interventions; support and linking to services; drop-in facility; user-led interest groups and involvement in service.

Training - training to all individuals e.g. professionals, carers and clients; a wide range of training options are provided from one day autism awareness training to high level diagnostic training. Training is currently free and also available on an outreach basis.

Information Service - advice and information in person, over the phone or through various media, via the information officer; library of current books, articles and service information; computer access to a range of online resources; operation of a duty system so that visitors have access to further specialist support and/or advice.

Development Team - strategic planning for autism services; partnership working with mainstream services and care groups; ensuring standards of service delivery for all individuals with ASDs; helping Greater Glasgow Health Board and Glasgow City Council ensure that they meet national standards through involvement in a range of Parliament/Government led reference groups.

Finance

Funding from the then Scottish Executive (£250,000 per year) ended in March 2006. Currently the ARC receives funding from a number of sources:

1. Recurring revenue from Glasgow City Council of £189,900

2. Recurring revenue through Greater Glasgow NHS through releasing existing staff of £119,476

One-off payment for 2007/08 from Greater Glasgow NHS of £185,000.

Outputs(November 2004 to June 2007)

• 2245 completed general one-day autism awareness training
• 45 completed advanced autism training (8 half days)
• 11 link practitioners in Learning Disability Teams
• 36 completed DISCO diagnostic training
• 7004 visits to the Centre
• 1432 requests for information
• 525 referrals to the Autism Resource Centre

Outcomes for people with ASD:

• Attendance at a wide range of group activities
• Availability of one-to-one autism specific interventions, either on outreach basis or in the Centre
• Information base, including 4 public access computers
• 'Safe' environment to carry out coursework or interests
• Website available for individuals on the spectrum, aimed at mutual support and problem solving
• Coordinated and seamless approach to services for individuals
• Fast access to appropriate health, social care, employment and other services
• 87% of participants felt that their overall experience at the ARC was 'very positive' or 'positive' (Source: NCAS evaluation 2006)

Outcomes for local authorities and health boards:

• Specialist Tier 4 service providing ASD expertise to other services
• Access to autism training at a variety of levels to enable appropriate skilling-up and competency building of staff within services
• Extensive library and information services for professionals
• ASD knowledge to enable authorities and health boards to meet their statutory duties in the most effective way possible
• Assisting all services to meet the needs of individuals with ASD

Project 3: "Number 6" the One Stop Shop for adults with high functioning autism/Asperger syndrome

Aims of project:

To provide a venue for people with AS and their carers to access a range of services including social activities, specific advice information and support, support with employment, in education and housing as required. Outreach support is provided across the Lothians. There is a training programme for professionals, parents and carers and volunteers. There is an extensive volunteer programme. There are specific groups for women, men with co morbid mental health problems and/or offending behaviour and a social group for 16-19 year olds.

Delivery of project:

Autism Initiatives provide the service from a budget of £250,000 of which AI get £200,000 pa the other money spent on Into Work, Independent Evaluation and other AS related projects

Number registered to use the service: 233

Number of attendances for a variety of services: 7011

Number of training courses run: 95

Number of volunteers: 52

Outcomes for people with ASD:

• "There is calmness, actual acceptance, a welcoming feeling. You can come and know it's alright; it's ok to come here. Whatever is happening you can fit in, there is a structure but its not rigid"
• "Concerns have been absolutely listened to and taken into consideration. There has been no judgement; there is complete acceptance and help"
• "I didn't have enormous expectations, you get used to not having expectations, I try not to set my expectations too high but I am quite satisfied"
• 80% of service users felt positive or very positive about their overall experience of Number 6
• 100% of parents and carers felt that their family member has benefited from the service or support they received
• 85% of the parents felt that they themselves had benefited (Source NCAS Evaluation 2006)

Outcomes for local authorities and health boards:

• Pre and Post diagnostic support provided by Number 6 is greatly valued by the local NHS diagnostic service
• Training for staff from local authority and NHS and others including Vol Orgs and the Prison Service among others enables more effective ways of working leading to more appropriate care provision where required
• Access to extensive library and information resource for staff
• Record of people being successfully supported into employment
• Record of people being enabled to commence and remain in Further and Higher Education
• Record of tenancies being maintained
• Record of mental ill health being monitored and early referral made where necessary
• Record of potential offending behaviour being noted and managed. Number 6 is a remote reporting Police Station

Project 4: NHS Education for Scotland Autism Learning Resource for Primary Care Professionals

Aims of project:

(a) To increase the understanding of key primary care practitioners of the needs of people with ASD when receiving routine patient care (not specific to their ASD condition)

(b) To increase the understanding of key primary care practitioners of when and how to refer patients to a diagnostic team

Delivery of project:

The Autism Learning Resource for primary care professionals is a web based resource which meets the above aims.

Primary Care Professionals include GPs, District Nurses, Public Health Nurses, AHPs, Practice Nurses and Practice Managers. However this resource would be useful for any practitioners who are involved in caring for people with ASD when receiving routine care e.g dentists and staff in A&E. Staff in social care settings and the voluntary sector may also find aspects of the resource useful.

Outputs from the project are a web resource for longer term reference, and production and distribution of leaflets to give information and signpost the web resources. The website will be assessed annually in terms of any updates.

To date statistics gathered on the use of the website shows that people are accessing it from all over the world and that the case studies, scenario and reference pages being the most accessed pages.

Outcomes for people with ASD:

Improved support and care when accessing primary care services (or front-line services).

Outcomes for local authorities and health boards:

Improved understanding by primary care staff of the needs of people on the spectrum and therefore possibly less complaints and more efficient use of services with improved outcome.

Project 5: NHS Education for Scotland Autism Argyll Project. June 2004 - May 2006

Aims of project:

To produce an information resource for parents/carers of children receiving a diagnosis of ASD based on the Autism Argyll Information pack.

Delivery of project:

February 2006.
Directory of individuals and teams undertaking assessment and diagnosis of ASD in Scotland. Distributed widely within Primary Care and across Scotland (Print run 6500)

May 2006
Parent /Carer Booklet. (Print run 6000)
Two-year supply distributed to all known diagnostic teams/centres in Scotland.

June 2006
Parent Booklet and ASD Directory available as PDF Documents on the Scottish Autism Services Network website. www.scottishautismnetwork.org.uk

October 2006
Parent/Carer booklet (Second print run 6000)
Distributed as per requests across Scotland. Stock held at the Scottish Autism Service Network. Scottishautismnetwork@strath.ac.ukor Telephone: 0141 950 3072

Total Cost: £110,000 + Staff Costs

Running in parallel with this project was the NESASD Learning Resource for Primary Care Professionals and some of the development costs (design) were shared.

Outcomes for people with ASD:

Scotland wide provision of high quality basic information on ASD for parents and carers available at the time their child receives a diagnosis.

Sustainability achieved by Scottish Autism Services Network hosting materials (booklet and directory) on their website.

Outcomes for local authorities and health boards:

Scotland wide directory of where the diagnosis of ASD (both children and adult services) takes place and contact details of at least one professional involved in diagnosis in each Health Board area.

Links Professionals involved in ASD diagnosis.

Provides clear referral pathway for Primary Care.

Project 6: NHS Education for Scotland NESASD Projects 2006-2007

Aims of project:

To build training capacity and capability within Scotland for professionals involved in the assessment and diagnosis of ASD.

Delivery of project:

November 2006
Autism Diagnostic Observation Schedule ( ADOS) Scoping Exercise completed by Dr Anne Gilchrist, Professor Anne O'Hare & Mrs Ros McCaughey.

January 2007
Training in the Diagnostic Interview for Social & Communication Disorders ( DISCO) The Autism Resource Centre ( ARC) Glasgow. E-mail: infoarc@glasgow.gov.uk
Three-year training programme for 98 trainees based in Scotland with a nationwide remit.
Partnership start-up funding to:

• Acquire seven course worth of training materials
• Set-up the infrastructure to organise the training

January - March 2007
ASD Seminars. Three events with two held in at New Struan Campus and the third in Aberdeen. 97 delegates attended. Collated evaluations available.

February and April 2007
Training in the Developmental, Dimensional & Diagnostic Interview (3di) computerised assessment for ASD (Software included). Two two-day events held in Glasgow with 43 trainees attending. Evaluations available.

TOTAL COST: £88,600 + Staff Costs

Outcomes for people with ASD:

• Improved knowledge and understanding of assessment, diagnosis and clinical interventions in professionals dealing with the children and families.
• Increased reliability of diagnosis.
• Improved diagnostic services.

Outcomes for local authorities and health boards:

Provision of evidenced based assessment diagnosis and interventions as recommended by SIGN Guideline number 98.

Increased capacity and capability across Scotland in the use of specialist ASD structured instruments (interview schedules and observation schedules) in both children and adult services.

Project 7: Scottish Independent Advocacy Alliance - Autism Development Officer

Aims of the project:

• To raise awareness and build capacity amongst independent advocates supporting people affected by ASD.
• To raise the profile and promote independent advocacy amongst those providing services to people with ASD.
• To establish stronger links between Advocacy organisations and Autism service providers.
• Identify barriers and gaps in access to independent advocacy for people affected by ASD.

Delivery of Project:

• Deliver 10 "Introduction to ASD" training sessions to advocacy organisations throughout Scotland.
• Offer in house training to all advocacy organisations in Scotland on: Introduction to ASD.
• Offer in house training to all ASD service providers in Scotland; Introduction to Advocacy.
• Offer talks/presentations about independent advocacy to ASD service providers.
• Offer talks/ presentations on ASD to Independent advocacy organisations.
• Deliver 3 "Advocacy Awareness Training" sessions for autism service providers.
• Deliver 4 "Autism and Advocacy Dilemmas" workshops for advocates.
• Provide relevant information through the dissemination on newsletters and e-bulletins.
• Build links with advocacy organisations and ASD Service providers to ensure open and effective communication.

Outcomes for people with ASD:

• Improved access to independent advocacy.
• Increased awareness about the value of independent advocacy.
• Advocacy organisations are better equipped to support people with ASD and appropriately meet their needs.

Outcomes for local authorities and health boards:

• Increased awareness of the role and value of independent advocacy amongst ASD service providers.
• Potential to save resources in the long run by ensuring people with Autistic Spectrum Disorders get their needs met early (before crisis situations).
• Advocacy organisations that are better equipped to meet the needs of people with ASD.

Project 8: Develop 2 new awards: Professional Development Awards ( PDAs)

Aims of project:

To equip professionals/employees/carers/parents/volunteers to meet needs of those with ASD, gain skills, improve standards of practice and assist employees to progress within specialism.

Delivery of project:

The national Autism Spectrum Disorder Reference Group identified the need for awards to recognise the specialist skill involved in working with people with autism spectrum disorders.

The Scottish Social Services Council with a working group appointed a consultant to develop 2 new awards for SQA Care Scotland 2004/5. The awards were completed at the end of 2005 and promoted from early 2006, by Care Scotland, via centres and at Falkirk (Airth Castle) event.

Developed Certificate in Supporting Individuals with Autistic Spectrum Disorders ( SCQF level 7) and Certificate in Managing the Support of Individuals with Autistic Spectrum Disorders ( SCQF level 8).

Outcomes for people with ASD:

The outcomes reflect the aims above. There is an increase in the number of people with the right skills and knowledge to work with people with ASD, improved referrals between services, improved information sharing and involvement of support services like advocacy.

Outcomes for local authorities and health boards:

Retention of skilled staff, improved referrals, increased information exchange and good practice.

Project 9: Transitions into Adulthood

Aims of project:

The aim of the project is to prepare young people approaching statutory school leaving age for the transition from school to other avenues of education, training or employment. There are two elements to the project, inschool support and out-of-school support. These two parts complement each other so that participants who are able to access both elements are able to put the theoretical skills learned in the classroom into practice in the out-of-school social groups.

Delivery of project (ie, who, where, how, costs):

• Two project officers (one for in-school support and one for social groups)
• Glasgow City; East and West Dunbartonshire; South Lanarkshire.
• The in-school support is delivered to small groups of young people (2-6 pupils) who attend mainstream schools or Communication Disorder Units attached to mainstream schools. The type and level of support is dependent on the needs of each group but tends to follow a format of one school period per week (55 minutes). The topics that the Transitions project delivers are broken down into modules which last between 6 and 12 weeks.
• The Out of School support is delivered to small groups of young people receiving in-school support. The groups tend to follow a format of one social evening (2 hours) per fortnight. The social groups incorporate a range of different activities aimed at developing skills covered during the in-school sessions, but also allowing the young people to take part in peer appropriate activities outside the family environment.
• Cost: £71K per annum

Outcomes for people with ASD:

To be able to plan for a successful transition to post-school opportunities. To apply for college/university place and acclimatise to new environment prior to start of course. To develop independent travel skills. To develop money management skill. In general, to equip young people with a range of skills that are essential for a successful transition towards college, university, employment or other future life opportunities.

Outcomes for local authorities and health boards:

• Access to experienced transitions staff
• Assistance re developing transitions protocols
• Encourages multi-agency working

Project 10: Post-Diagnostic Information Project (Next Steps)

Aims of project:

To develop an information resource for parents and educationalists that incorporates both generic autism information along with directories of autism services available locally within all 32 Scottish local authorities.

Delivery of project (ie, who, where, how, costs):

• One project officer (plus line management)
• Based in NAS Scotland office but liaising with all 32 local authorities
• To compile the generic autism information via research (especially regarding the NAS information base)
• To liaise with key local authority personnel in social work, education and health in order to compile the local service information
• Cost: £50K per annum (three year project)

Outcomes for people with ASD:

• Access to comprehensive generic autism information resource
• Access to information regarding availability of local autism services in 32 local authorities
• Ready access to information relieves the stress of searching for accurate autism information and information on services that are relevant to parents and carers on a local level

Outcomes for local authorities and health boards:

• Ownership of a significant autism information resource
• The ability to provide relevant generic and local information to parents and carers at, or shortly after, the point of diagnosis
• By accessing this information resource, local professionals become more informed and better skilled regarding their input to parents and carers
• Encourages multi-agency working

Project 11: Autism Spectrum Disorder ( ASD) Assessment Project, NHS Argyll and Clyde, 2006

Aims of project:

To address the question as to whether or not waiting times for assessment of ASD can be reduced in a rural/urban area, by establishing local multi-agency ASD assessment teams ( AATs). The research hypothesis of the pilot was that following an initial training input, local multi-agency assessment teams would perform as reliable and valid ASD assessments as a specialised team. This could therefore be one possible method of minimising current, increasing waiting lists for ASD assessment.

Delivery of project:

• Four local AATs (in Argyll and Bute and East Renfrewshire) were trained by members of the specialised AAT (based at Vale of Leven Hospital) in ASD assessment, including the use of ADOS, an ASD-specific assessment instrument.
• The 4 local AATs assessed 39 cases of suspected ASD in the 0-18 year old range, during February-August, 2006. The specialised AAT assessed the same cases in parallel, each team being blinded to the other's activity and findings.
• Quantitative data was gathered and the local AATs were also evaluated as regards their qualitative experience of the project.

Outcomes for people with ASD:

• 38 children and young people were assessed over 7.5 months (M31>F7; Age 44m to 176m). By comparison, during 2002-04, the specialised AAT ( SAAT) assessed 57 'likely ASD' patients (ie the project assessed 38 cases in 7.5m (5 cases per month), compared with the SAAT assessing 57 cases in 24 months (2.4 cases per month); ie the pilot process appears to be over 100% more efficient.
• Local AATs took only 10 weeks, during the assessment phase of project, to reach diagnostic consensus with the SAAT.
• Diagnostic consensus between speciality and locality AATs can be reached after approximately 14 weeks
  (1 week training, 13 weeks mentoring) and using local AATs can substantially reduce waiting lists times, with minimal extra resources.

Outcomes for local authorities and health boards:

• Multi-agency working in local AATs can be achieved with minimal disruption to services, with minimal training, equipment and time resource.
• Waiting times for ASD assessment can be significantly reduced by means of creating local AATs within a context of having a specialised AAT for training, mentoring and peer supervision ( CPD) on completion of a training and mentoring phase for the local teams.
• Local authorities and health boards who have significant ASD assessment waiting lists should investigate the applicability of this model to their area and implement similar initiatives so as to reduce ASD lists.

Project 12: Retrospective case note review of children with autism spectrum disorders: utilising clinical information to inform diagnostic boundaries and assessment

Aims of project:

1. To identify subgroups within children with Autism Spectrum Disorder ( ASD)

2. To explore relationship between developmental history and symptom profile

3. To determine if case-note analysis can provide a robust baseline for a future follow up study of children with autism

Delivery of project:

A retrospective consecutive case note study of 280 children aged from three to eleven years was undertaken by the Scottish Centre for Autism, Royal Hospital for Sick Children, Glasgow. Items of information relating to reported and observed behaviours were identified and defined in a glossary. Latent class analysis was used to identify subgroups based on observed items of behaviour and these essentially reproduced the diagnostic categories. Information from the parent interview was sorted into three subscales. Summed scores on each subscale were significantly different for each of the diagnostic categories, but there was a large overlap. Case notes provided a rich account of symptomatology and history but lacked standard measurement of global functioning or IQ. While these were not necessary for diagnosis, this may limit the usefulness of the dataset for a future follow up study of developmental trajectories in ASD.

Outcomes for people with ASD:

The reliability of a specialist diagnostic service which does not rely on standardised instruments but instead uses a naturalistic play based assessment is demonstrated and results indicate the importance of both detailed parental account and direct observation of the child. Distinctive patterns of symptomatology between Asperger syndrome and autism were demonstrated. A cluster analysis of all those with Asperger Syndrome produced three clusters and description of these may alert clinicians to recognising more subtle presentations of ASD.

Outcomes for local authorities and health boards:

A specialist national second opinion service for ASD has a key role in identifying cases complicated by subtle or unusual presentation or comorbidity. While autism is everyone's business, it is likely that there will continue to be a need for tier four services for ASD.

Project 13: : Enhancement of Autism Services Directory on the internet

Aims of project:

The aim of the project is to develop and extend the information on services in Scotland for people with autism spectrum disorders and their parents/carers. The National Autistic Society and the Scottish Autism Service Network are linked and work collaboratively in this project to share information about services which is then validated, organised and published in the National Autistic Society's web-based database the Autism Services Directory, formerly known as PARIS, (the Public Autism Resource Information Service)
http://www.info.autism.org.uk

Delivery of project:

• One Autism Information Officer
• The postholder is an information professional who gathers, organises and maintains information in the Autism Services Directory relating to services relevant to people with autism.
• The postholder works in co-operation with the Scottish Autism Service Network ( SASN), sourcing information from contacts they have, and ensuring information about services suitable for the Directory is validated and published. She has been involved in promoting information-sharing amongst professionals involved in autistic spectrum disorders.
• From October 2006 to March 2007 the details of 314 services have been updated. 143 new services have been validated and added to the Directory.
• Outcomes for people with ASD and their families:
• Improved awareness of, and access to, up to date information about autism specific services, training and support groups in Scotland.
• A greater number of autism specific services included on the Directory.
• Outcomes for local authorities and health boards:
• Improved awareness of, and access to, up to date information about autism specific services, training and support groups in Scotland.
• A greater number of autism specific services included on the Directory.

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