National ASD Development Team

Annual Report 2017-18 31st May 2018

Contents

Introduction ...... 3 Roll Out of Integrated Autism Services in ...... 3 Increasing Awareness and Improving Public Service Responses ...... 8 Co-ordination and Delivery of Training ...... 10 ASDinfoWales Website and Communications ...... 11 General On-going Support and Awareness ...... 13 The Year Ahead 2018/19...... 13 APPENDICES ...... 15 Autism Diagnostic Observation Schedule (ADOS) / Autism Diagnostic Interview – Revised (ADiR) Training ...... 15 Early Years Learning with Autism Programme ...... 15 Primary School Learning with Autism Programme ...... 16 Secondary School Learning with Autism Programme ...... 17 Case Studies ...... 19

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Introduction

This Report summarises the work undertaken by the National ASD Development Team during 2017-18. The Team is hosted by the WLGA, funded by Welsh Government and works in partnership with Public Health Wales, various partners and stakeholders across Wales.

It has been both an exciting and challenging time for the Team over the past year, and in supporting the development and roll out of Integrated Autism Services throughout Wales. Work also continued on the development of new resources to support the on-going work undertaken by Autism Leads and others to raise awareness and equip professionals to have a better understanding of the needs of autistic people and how those needs can be met.

The Team has changed over the past year with the departures of Senior staff who WLGA thank for their services.

The Team have had many notable achievements during the year. This is as a result of working closely with staff and stakeholders and the Team remain committed to building upon this and embedding good practice across Wales. However, despite the hard work and commitment of the staff and partners, some work areas are not progressing as quickly as initially hoped and these will be taken forward this year. While improvements in key areas have been made, and public awareness of and sensitivity to autism continues to increase, there remains much to do to ensure autistic people receive a timely diagnosis, appropriate support and assistance and are able to achieve improved outcomes in all aspects of lives.

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Roll Out of Integrated Autism Services in Wales

The National ASD Development Team played a critical role in establishing and supporting the development of an Integrated Autism Service in Wales, an important innovation envisioned and created by the Team following extensive engagement with autistic people, their families and carers, key partners and professionals. Working closely with Welsh Government, local authorities and health, regional IASs have and are being developed, contributing to a national service with similar and consistent standards and practice, providing advice, guidance and offering practical solutions to a range of challenges.

During the year a number of regional IASs came into being and were operational while other regions continue to make progress – it is anticipated that there will be an operational IAS in each region by Autumn 2018. The Team played a key role in supporting the creation and formation of an IAS for Wales and have continued to support their creation and establishment and continue to do so for those areas not yet fully operational. To support the development of an IAS, during the year the Team has: • Produced the National Guidance for the IAS in Wales, setting out the role, structure and • Provided five day ASD/IAS specialised training session for three of the IASs • Facilitated and supported Pathway and Engagement events regionally

The Regional ASD Development Officers have worked closely at the regional level in helping to shape and establish an IAS. This critical resource has enabled support specific to the needs of that region and ensure their services are developed in the most appropriate way whilst maintaining consistency with other IASs. Provided below is a summary overview of each regional IAS and the progress that has been made this year in their establishment:

Cardiff and the Vale The team were launched in September 2017 although not fully staffed and in a permanent base until March 2018. The Service has combined several existing services and the new IAS. Adult assessment and diagnosis is now being effectively embedded into the service with robust links established with adult mental health services – several mental health cases have been jointly worked with the team. In addition, the service has offered specialist advice and guidance to a range of professionals and works closely with health, education and social care colleagues – this has included the development of resources on how to adapt practice. Support has been delivered on an individual and group basis e.g Socialeyes groups, Skills for Living workshops, the monthly forum. Feedback has been very positive ‘one person has left the house unaccompanied after many years’ and ‘several carers reported feeling heard and supported.’

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Cwm Taf Initial scoping work has been undertaken by the team which has informed how the service has been developed and rolled out. The service is now operational and open for referrals although it will not be fully staffed until June 2018. A number of parent carer engagement events have been held prior to the team commencing work to ensure that there was a clear understanding locally of what the team’s role would be. In addition, there has been effective engagement with partners to help shape the roll out and identify areas for joint working.

Gwent The Gwent IAS has been operational since September 2017. The service is overseen by a Service Manager who is employed jointly by Monmouthshire County Council and Aneurin Bevan Health Board. The team have successfully reduced the Adult Diagnostic waiting time, however demand is increasing and maintaining diagnostic assessments at this level will be a challenge. Support is offered on an individual and group basis – which includes a regular weekly drop in session. Feedback has been very positive:

“Thank you so much, this is the first time that I have felt listened to and supported and that has made a difference already” (individual).

“Thank you for all you have done to support me” (individual).

“I wish that I had attended this course a long time ago” (post diagnostic workshop).

The team have partnered with the Expert Patient Programme to run some innovative and effective sessions – including one on confidence building. In addition, the team continue to give information and advice to Autistic individuals, their parents and carers and professionals. A joint ASD awareness raining event with the neuro- developmental services was held during World Autism Week.

North Wales The IAS will be officially launched on 27th June and arrangements are currently underway for a conference to introduce the service to a variety of stakeholders across North Wales. Significant work has been undertaken in supporting the development of the IAS and in the progress that has been made by the region. The staff compliment is growing as more successful appointments are made to staff the IAS. The operational base has been identified (Greenfield Business Centre) and is being appropriately equipped, e.g. IT.

Considerable effort has been made to work in a co-productive way and ensure stakeholder engagement. To raise awareness of the IAS and to ensure it is aligned as appropriate, two successful IAS pathway events have been held. In addition, Lived Experience Advisors have participated in operational meetings, task and finish groups and interview panels.

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Powys Powys was the first IAS to be developed and became operational in June 2017. The service has undertaken a huge amount of work developing their systems and processes and this has helped inform the development of the IASs in other areas. A mapping and gapping exercise has been undertaken to scope out existing parent/carer support groups in the county. New groups will be established with a view to them becoming self sustaining in the long term and in partnership with the 3rd sector if required. Adult diagnostic assessments have been commissioned in the interim whilst the service is being established. In addition, a range of support interventions have been established on an individual and group basis e.g. a leisure programme in the South of the county which will be replicated in the North if found to be effective. The service has also had a key role in upskilling professionals in a range of disciplines and offering signposting and advice. The Service will be piloting the Outcome Star assessment and planning tool – if this proves effective it is planned that this tool will be rolled out across all IASs.

West Wales The service is currently under development. 3 Support Workers and the Administrative Officer have been appointed and the Team Leader post is being advertised. The remaining team members will be recruited by September 2018. A proportion of 17/18 funding has been targeted at addressing the diagnostic assessment waiting times for both Adults and Children. Significant work has already been undertaken to reduce the Adult Diagnostic waiting list so that once the IAS is operational it will not have a large historical backlog. External and internal solutions have been commissioned to help address the Children’s waiting list. A base has been identified that will allow both the IAS and he children’s ND team to be co-located which will assist in joint working and access to clinical space for assessments.

Western Bay The service is also under development. Successful engagement events with parents, carers, autistic individuals and professionals have taken place to ensure that the new service meets local needs. A Service Manager has been appointed and will begin in August 2018. The Service Manager will oversee the recruitment of other team members and develop the service. In addition, funding has been utilised to deliver additional clinics to reduce the waiting times for children’s assessment and diagnosis. These will be delivered in 2018/19

Data collection In order to achieve a consistent data collection approach across Wales an on-line intuitive data collection system was developed during 2017/18, as a short term solution before the new national WCCIS system was available in all regions. The development has not progressed as quickly as anticipated and there have been local governance concerns. Also as the roll out of WCCIS has progressed quickly, a decision was taken with Welsh Government to focus on a simple interim data collection approach until regions can all access WCCIS. Some regions have already transferred to WCCIS and this will provide early feedback on its effectiveness.

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The newly establish National IAS Leads Network will work collaboratively with the Team and WG to finalise reporting ICF templates for the next financial year to ensure that information collected provides information on the outcomes and impact of the services. There will be further work to align data collected in the IAS and that collected in the Neuro Developmental services.

Training To support the roll out of IASs at the national level, a number of training courses have been arranged and/or delivered by the Team:

• In September and October 2017, a 5 day training course was delivered by the ASD National Development Lead. It was a specialist training package developed by the Team that covered an array of practical topics including the core symptoms of autism, the experiences of autistic individuals and parental stress. In addition, the training included adapting practice when working with parents, common issues in autistic children and included practical examples and case studies. The IAS in the national context was discussed as well as working on examples of individual cases the IAS would be expected to work with and in consultation with other services, and where signposting would be appropriate. Co-occurring conditions were also discussed in relation to autism, including ADHD, GAD, OCD and depression. The training course was very well received, with participants noting that not only was it an opportunity to learn more in-depth knowledge but also an opportunity to reinforce the strategic direction of the IASs.

• During September 2017 and January 2018, 16 staff from across 3 regions benefited from training from the DISCO Team. This is a Diagnostic Interview for Social and Communication Disorders (DISCO), it is used as both a clinical and a research instrument for use with children and adults of any age. This provides delegates with the skills to use this diagnostic tool within the IAS.

• Over 5 days in March 2018, a combined Autism Diagnostic Observation Schedule (ADOS)/ Autism Diagnostic Interview - Revised (ADiR) training course, commissioned and co-ordinated by the National ASD Development Team, was held for 12 staff members across 4 regional IASs. The training course was delivered by “BeginningwithA” and the course ensured staff were equipped to administer and code the ADOR and ADiR. Feedback from the training is available in Appendix 1.

While much of the time of the Regional Autism Development Officers is spent working with and supporting the on-going evolution and learning of the IASs, they also undertake other activities and provide a range of support in line with the aim and work of the wider National ASD Development Team. This includes supporting the roll out of the resources and schemes/campaign as highlighted below, providing a number of training and briefing sessions across Wales in increasing awareness and educating organisations and staff on becoming ‘autism aware’.

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Increasing Awareness and Improving Public Service Responses

Learning with Autism

This year saw the successful launch of both the Learning with Autism Early Years and Secondary School Programmes, supported by a range of resources.

The Early Years programme consists of the following:

• Training film for early years staff, showing some of the challenges faced by children with an ASD during a normal day, designed to develop awareness, and stimulate discussion about the steps we can take to improve their experience and engagement levels. This includes an online questionnaire leading to a Staff Certificate in ASD Awareness. • Autism: A Guide for Early Years Settings, a complete guide to understanding and supporting children with an ASD. • Two self-evaluation tools: one for all childcare settings eg. playgroups, Flying Start and non-maintained settings based on the CSSIW inspection framework for Early Years and childcare. The other based on Estyn inspection framework for all settings delivering foundation phase places. Both self- evaluation tools will help settings to identify current provision, practice, plan and monitor improvement. • a Power Point presentation about the issues involved in autism an online questionnaire leading to a Certificate in ASD Awareness for other early year setting staff (catering, admin and so on) • For pupils, there’s ‘Teifi and Friends’, an animated film showing how children in early years settings can be kind and accepting towards peers with additional needs. The Team are also currently developing a Teifi storybook to support the roll out of the Early Years programme in response to feedback received • A range of free to access support resources such as an online; o Child Profile - available to setting staff, parents, carers and other professionals. With everyone working together, it can build into an effective resource, making sure there’s consistency and continuity of care for a child with an ASD. o Childrens’ Picture Cards - a simple, interactive resource, where you can search, select, download and print from a series of bilingual picture cards, to create a structure chart for a child with an ASD, providing daily structure or to support specific activities such as toilet training. o Cue Cards - to support verbal instruction with visual cues and support with specific activities such as toilet training.

The Team with the support of stakeholders has publicised the availability of the resources and has supported the roll out through the delivery of training and briefing session on the best use of the resources (see below) and will undertake further work in the coming year to ensure these valuable resources and programmes are adopted

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and used by schools across Wales, thereby increasing their sensitivity to autistic children and improving the experiences of autistic children in the education system.

Statistics

Early Years Since its launch at the end of September to 31st March 2018, 283 staff have undertaken the training programme and 9 Early Year Settings have received their LwA award across Wales.

Primary Schools During 2017/18 and since last years report a further 54 schools achieving their LwA award, and the following have been undertaken this year, taking us to 80 schools across Wales: • 1568 Teaching staff • 1906 Learning support Staff • 12,945 Autism Superheroes

Secondary Schools Since its launch at the beginning of September to 31st March 2018, 759 staff have undertaken the training programme and 3747 pupils have received the Sgilti lesson and taken their pledge. 3 schools across Wales have received their LwA award.

“Can you See Me?” “Can You See Me?” is an autism awareness scheme, aimed at promoting understanding and acceptance amongst communities in Wales in order to improve access to facilities and reduce the stigma that many autistic individuals and their parents and carers’ experience. The Scheme is being rolled out across Wales and to date significant milestones include:

• “Rainbow Awards” have been achieved in Merthyr Shopping Centre, Milford Haven, McArthur Glen Designer Outlet, Aberafan Shopping Centre and is hoping to achieve the Award by April 30th.

• Training on the Scheme has been delivered to City Football Club Community Trust; Neath Port Talbot Gower College (NPTGC) to include lectures, support staff and early years setting within NPTGC.

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• The on-going support from parents, carers and businesses across Wales has been incredible, and we would like to take this opportunity to acknowledge the support many have provided us with to help us with the roll out of the scheme into local communities across Wales.

Co-ordination and Delivery of Training

During the year, the National ASD Development Team have delivered a number and range of training courses in support of their work, raising awareness of autism and the specific needs of autistic people; to support and assist organisations in using the resources developed by the Team; and in arranging the commissioning and delivery of training by external bodies in support of improved service delivery, including by the IAS. Some of the ASD Leads have also supported the delivery of the training Using the Learning with Autism resources, in addition to awareness raising sessions to highlight the programme and resources (e.g. presentations to ALNco’s and educational psychologists) the following training has been delivered:

• Learning with Autism: o Early Years: In total 25 training sessions across Early Years settings across Wales o Primary Schools – 4 training sessions, including 3 super schools across Wales o Secondary Schools - 9 training sessions have been undertaken this year. • Up to 10 sessions have been held across Wales for Flying Start managers focusing on the Health & Social Care for children training package, also received Early Years training and have committed to continue to support the roll out of the training in local settings. • 6 training sessions for Health Visitors in ABMU as part of Health Visitors Skills Day (a series of sessions) focusing on the Health & Social Care for children training package. • HR training was provided during April 2017 to staff at WG Merthyr office and a further session for staff at ONS, Newport. • 10 leisure training session were facilitated in SE Wales, including train the trainer session for staff within Disability Sports Wales, as mentioned above. • There have also been several generic ASD awareness sessions held for business networks, local events and conferences.

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• Working with Autism training delivered for Workways Wales in Neath Port Talbot and Pembrokeshire

The training has been well received across all areas and requests are being received on a regular basis.

ASDinfoWales Website and Communications www.ASDinfoWales.co.uk is managed by the National ASD Development Team. The website is kept up to date, and acts as a hub for national autism developments.

We have seen a 61% increase in users of the website during 2017/18 compared to 2016, number of page views in 2017/18 being 509,058. The site has an average number of users of 6850 per month.

ASDinfoWales Website Sessions & Users Stats 150,000

100,000

50,000

0 2011 2012 2013 2014 2015 2016 2017

Sessions Users

Over 24,200 people have successfully undertaken our general ASD Aware scheme.

The Team continue to develop and enhance the ASDinfoWales website and additional resources have been added, examples include:

o ASD Planner app – had been redeveloped and currently working on compliance with GDPR regulations before launch.

o “The Birthday Party” filmed launched in June 2017. The film is a partnership project between the Welsh Local Government Association, University, Aston University and clinical psychology partners, and has been funded by the Economic and Social Research Council and Welsh Government. The films is aim is to improve front-line professionals’ understanding and awareness of autism in children and available on ASDinfoWales website: www.ASDinfoWales.co.uk/news/wlga-press-release- film-collaboration-aiming-to-increase-awareness-of-autism-signs-in-children

The Film is fast developing as an example of international best practice and in response to requests received, is also available in Latvian, and is in the process of being made available in Italian, Lithuanian and Spanish thanks

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to the work being taken forward by Welsh Autism Research Centre (WARC) / Auspicious. o Leisure Scheme was launched at the beginning of 2017. Using train the trainers’ approach Disability Sports Wales officers have been trained to deliver this, so that training is ongoing, spreading the message and training to further staff. The Leisure Scheme aims to increase knowledge and awareness of the needs of individuals with autism within the leisure industry www.ASDinfoWales.co.uk/leisure-staff o 8 Regional events across Wales to share resources took place between April/May 2017. There were two sessions per day, one for professionals and another for parents. The aim of these events were to raise awareness of the work of the Team, our resources and to provide further information regarding the IAS and also advising them about our new schemes and helping us roll out the CYSM scheme. o Following on from repeated requests for emergency services training from various sources and in response to a scoping exercise identifying the need and desire for developing an emergency services programme, an emergency services training film has been completed and a training package to accompany the film is being developed in 2018/19. o Mental health and social care training package completed and the Team have commissioned Aspects - Adult Autism Psychology Ltd to deliver the training across the Local Authorities and Health Boards in Wales. The aim of the one day course is to raise awareness and understanding of autism across specialist health and social care practitioners and provide information on how to adapt practice. o Idiom Glossary - In response to the issue that many autistic individuals may have problems understanding some of the most common idioms used as part of everyday language, the Team has developed an on-line idiom dictionary in English and Welsh which is available from the ASDinfoWales website www.ASDinfoWales.co.uk/idioms-glossary o Housing scheme was developed and is available on the ASDinfoWales website. The scheme was developed and piloted with Merthyr Housing Association and will be part of the development of updated guidance in the 2018/19 work programme www.ASDinfoWales.co.uk/housing-provider- scheme

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General On-going Support and Awareness

The Team provide a range of on-going support to those working in the field of autism and in supporting the development of professional practice and information exchange. In addition to continuing to arrange and facilitate a Network for ASD Leads, during the year the Team also:

• Established a National Network for Integrated Autism Service (IAS) Leads to aid the sharing of information and practice; identify common challenges and questions; keep one another updated about regional and national progress • Undertook a scoping exercise for a community of practice for the adult network/IAS and re-established a revitalised Network which has developed a clear work programme for the coming year

The Team, as an integral part of their work, maintain good contacts and engagement with autistic people, their families and carers to hear their issues and concerns and to help inform the work.

The Team attended a number of educational and cultural events held across Wales during the year to raise awareness of the wide range of resources developed by the Team with stakeholders to support autistic people, their families and carers and to highlight the work currently on-going to improve services available to autistic people and the development of an Integrated Autism Service. To achieve this, during 2017/18 the Team exhibited at National events such as the Royal Welsh Show, Autism Festival at Swansea University, the National Education Show, National Social Services Conference and the National Welsh Autism Show, as well as some local autism awareness events across Wales.

The Year Ahead 2018/19

The National ASD Development Team has produced a work plan for 2018/19 which sets out the high level priorities for the Team, produced in consultation with Welsh Government and practitioners. It is supplemented by a more detailed activity work programme and a budget summary.

The National ASD Development Team supports the delivery of the ASD Strategic Action Plan and Delivery Plan in conjunction with key stakeholders. The Team has worked with partners across Wales in response to engagement with autistic individuals and parents and carers, together with professionals, to produce an extensive set of resources to increase awareness of autism and to support autistic adults and children, professionals and service providers. The 2018/19 work plan is a consolidation of this work and includes the ambition to rollout out the resources across Wales in an effective way with the support of partners and stakeholders. The work plan builds on a foundation of a number of years of work among partners with a commitment to supporting and responding to the needs of autistic individuals and children and their parents and carers.

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The implementation of the Integrated Autism Service across Wales is a further key priority and the Team will be working with the 7 Regional Partnership Boards (Social Care and Health) to support the effective establishment and delivery of these services for the benefit of autistic individuals, children with autism and their parents and carers in the context of existing services. The resources referenced above represent an important underpinning of the IAS delivery and we will be working closely with Public Health Wales in reviewing resources going forward. The priorities in the work plan are based on a combination of priorities identified by Welsh Government; on-going discussions and informal feedback from stakeholders; the Evaluation of the IAS and ASD Strategic Action Plan Interim Report [1] and the knowledge and experience of the National ASD Development Team, building on previous and existing work.

The work plan 2018/19 will include an informal review of the role and structure of the National ASD Development Team and the WLGA will implement recommendations/ changes required in agreement with the Welsh Government. In the interim within existing staff budgets, two National Leads have been appointed on a temporary basis to support the work going forward. A National Strategic Lead provides strategic oversight to the Team and engagement with the 7 Health and Social Care collaborative Regional Partnership Boards and key partners and stakeholders; while a National Professional Lead provides key professional oversight and input to the Team and partners in the rollout of the Integrated Autism Services and ASD resources.

Copy of the National ASD Development Team work plan is available on www.ASDinfoWales.co.uk

[1] Evaluation of the Integrated Autism Service and ASD Strategic Action Plan: Interim Report, Dr Duncan Holtom and Dr Sarah Lloyd Jones, People & Work, ©Crown, 01/03/2018

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APPENDICES

Appendix One

Provided below is feedback received following the various training courses arranged and/or delivered by the Team as part of the evaluation process:

Autism Diagnostic Observation Schedule (ADOS) / Autism Diagnostic Interview – Revised (ADiR) Training

If you wish to make a comment about the course please enter it here:

“I had been told that the training was going to be good, but I didn’t realise how good it was going to be. Carol is a brilliant trainer and is able to help us understand the assessment with case, and give us confidence to go off and use them professionally.”

“Very informative, good use and materials, plenty of opportunity to practice using tool, coding and explanation of issues arising.”

“Very good and informative. Excellent trainer who clearly has extensive knowledge and experience enabling her to answer difficult questions. Intense but very interesting and enjoyable.”

Early Years Learning with Autism Programme

Has the Learning with Autism programme increased understanding of autism in your setting?

“The programme has definitely increased the knowledge to all staff and they now feel more confident.” Norfolk House Nursery

Did the children enjoy the Teifi and Friends animation?

“The children loved Teifi and a few parents have come in asking about it as the children have spoken about it at home.” Norfolk House Nursery

“Pupils thoroughly enjoyed the Teifi and friends animation. It was age appropriate and very informative. We already feel that some pupils are demonstrating a better understanding of others needs in the class and on the yard. ” SNAP Playgroup

“Yes the children have learnt to be more tolerant and understanding. They seem to interact better and it is lovely to see.” Zoopers

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Would you recommend the Learning with Autism Early Years Programme to other settings?

“I'd definitely recommend this programme and I think it's something that every setting should have to do and have it in place” Norfolk House Nursery

“Yes, as this would ensure continuity of practice from playschool onto school” MiClub

Primary School Learning with Autism Programme

Would you recommend the Learning with Autism Primary School Programme to other schools?

“100% yes! We only have one child who is officially diagnosed as Autistic but we can see traits in others. These techniques will help every single child and the fact that we are openly talking about Autism is a fantastic thing and parents are more confident to come and talk to staff if they have any concerns or need advice. I think this program should be run in every single school.” Alway Primary

“Absolutely, without question. It should be a natural part of PSE for all pupils and good practice for staff behaviour.” Cantref Primary

“Most definitely. It raises awareness and makes it ok to talk about these things. It becomes a ‘normal’ thing to talk about, no one shies away from it and it helps to highlight individuality.” Golftyn Primary

“Definitely, the change and confidence in some of our children with Autism since starting this course has been huge. I feel that the staff are better equipped to deal with situations now and there is generally a better understanding.” Narberth Primary

“Yes – Definitely. We are a school with a large number of staff who all completed the scheme and said how interesting and useful it was – Especially as we have two County Resources for statemented children within our school.” Ty Ffynnon

“We would highly recommend and encourage any school to take part in the programme. It will not only help staff to deliver different strategies which not only benefit autistic pupils but are able to support non-autistic pupils also.” Ysgol y Frenni

Has the Learning with Autism Primary School programme increased understanding of autism in your school?

“Absolutely! It is a subject that I am very passionate about as my son is Autistic but it has been so beneficial to raise awareness in the staff that didn’t have much knowledge. All staff are now confident to notice signs and are happy to adapt their

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teaching styles to support children who may well be on the spectrum.” Craig yr Wylfa

“Yes, there is greater discussion about Autism in general. Class teachers approach the ALNCo describing traits in children. It has enabled staff to understand behaviour in particular children and to work with rather than against this. Traits are seen in many children and adults and with understanding has come greater patience and realisation that not all children will conform easily. Sensory awareness is something that generally wasn’t realised before and the difficulty some children have with social clues.” Golftyn Primary

Did the pupils enjoy the autism superhero programme?

“Yes. A very positive response from all concerned. Those children with ASD traits were not referred to by staff or pupils in relation to the programme. All pupils accepted the message and thought the pledge was ‘cool’.” Cantref primary

“Yes, they became engaged with it, and were sensible and sensitive in their approach towards it. Because the school has a LRB, the children have experienced and interacted with children with ASD. this has helped them in understanding them more.” Llanmartin Primary

“The pupils really engaged in the story on the website and were very proud of their certificates. A lovely touch to the programme. It truly is a whole school approach.” Ysgol y Frenni

Secondary School Learning with Autism Programme

Would you recommend the Learning with Autism Secondary School Programme to other schools?

“This has been a wonderful programme and as much as I feel we have more work to do- which I am very excited about- I really do feel it has been a fabulous awareness campaign with very good resources to support. Thank you very much.” Risca Comprehensive

Did the pupils enjoy the Sgilti lesson? Do you feel the programme has had a positive impact on pupils?

“We had very good feedback from the Sgilti lesson- some staff commented that the discussions were fantastic in the form classes with pupils really wanting to understand and gave some very good examples. Very much so, our pupils feel they ‘belong’ and have always wanted friendships- they now have more pupils chatting to them, for example a pupil from mainstream asked one of boys if he wanted to be his friend on the Xbox, this had a huge impact for our pupil.” Risca Comprehensive

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“Pupils seemed to enjoy the Sgilti lesson and contributed well to the sessions. All pupils seemed to have learnt things from the Sgiliti session about autism that they didn’t know before and some pupils who didn’t have any knowledge on autism were able to say what they had learnt about autism in the session. I believe the programme had a positive impact on pupils. It has raised awareness on autism especially those who had no knowledge of autism before the Sgilti lesson. Pupils are aware of what they can do themselves in order to support pupils with autism.” Ysgol Llanhari

Has the Learning with Autism programme increased understanding of autism in your school?

“Yes. Our centre was previously an additional part of the school that not many visited. Now we have people in all the time, they come and spend time with our pupils- they show a lot more understanding, for example when they have to leave a lesson, or need some space and also using the IEP’s to plan for our pupils. Staff come and ask us for support with planning- we really feel we have become the heart of our school.” Risca Comprehensive

“Yes, all staff have an increased understanding of autism and are now aware of positive strategies that can be used and how we can better support pupils.” Ysgol Llanhari

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Appendix Two

Case Studies

The following case studies have been collated from examples of practise across Wales. They range from examples of general intervention in support of individuals with autism and parents and carers, to case studies specific to the Integrated Autism Services that have been established during 2017/18.

Cardiff and the Vale of Glamorgan Region

Keith Ingram, ASD Lead Cardiff and the Vale of Glamorgan

Contact was made by the HR department of a national pub / restaurant chain. They had an autistic employee in the region who was on the brink of being dismissed from his role. They were seeking some specialist input and support for the manager in the premises with a view to the employee keeping his job. 2 short meetings took place, one with the manager only and the second with the manager and staff member. The employee had not completed a mandatory online training module that was a requirement for continuing work. The meeting highlighted some areas of information around awareness that the manager and his staff needed to take on board. The ASDinfoWales site was recommended and accessed by the manager for further reading. The meeting further highlighted a difficulty in communication. The manager was being kind and alluding to the consequences of non-compliance. What was needed was speaking plainly and informing the employee that if he failed to complete he would be dismissed by Friday.

Feedback from the individual: The employee understood the importance of completing the training and feedback from the manager was, “Thanks so much for coming, he finally gets it now and he’s really flying, and will get it all completed by Friday.”

The employee did complete and he retained his job.

Any lessons learned: Employment is one of the things that makes a huge difference to people. Having a stable job and income is so important. People often only seek help right at the very end, so time is often of the essence. In this case, it was essential that help was provided in a very short time frame. Doing this simple thing and doing it quickly meant that in this case the employee kept his job.

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Cwm Taf Region

Catherine Smith, Speech and Language Therapist, Cwm Taf IAS

The Cwm Taf Integrated Autism Service (IAS) is a relatively new service. The following case study has been written to allow the reader to have an understanding of the Integrated Autism Service pathway from referral to discharge.

Introduction D is a 22 year old man. He was referred to IAS by Primary Mental Health services for input around management of anxiety symptoms, leisure and recreation opportunities and employment support. The input required was identified as being for a short, focused intervention.

Background D lives with his parents and has previously attended college courses. He reported that anxiety increased when he was at university with him experiencing physical discomfort and to him becoming overly fixated on his physical health. Symptoms had reduced since ceasing going to university and with the introduction of medication.

Referral All the correct paperwork including details of diagnosis accompanied the referral which greatly aided the process.

The referral was received on week 1. It was processed during referral meeting on and allocated to two members of the team on week 3. His initial appointment was on week 4.

Initial Appointment Initial appointment was offered on week 4 with a clinician and Family Support Worker from IAS.

During the initial appointment an initial case history form was completed with D. D was asked to rate how well he felt he was able to manage various aspects of his life. This provided an understanding of his level of insight into any difficulties, whether he had used any strategies and whether he was willing to try suggested strategies. As D was talkative and gave very thorough responses, this took two sessions rather than one.

The findings from the initial appointments were discussed at a multidisciplinary meeting in week 6.

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Input Anxiety Management Plan The clinician defined anxiety and described the possible physical effects it could have. D identified how stress physically affects his body. D was able to list situations which might cause him to experience increased anxiety. We used tools to develop a personalised anxiety managed plan with D identifying strategies to help manage his anxiety.

Signposting Information The Family Support Worker discussed and provided information about sport and leisure activities in the area.

Employment support D reported that he was not actively looking for a job at present but that he would like a part time job in the future. During discussion he did not appear to have a good knowledge of how to find jobs or apply for them. The Family Support Worker provided information about the local Job Centre and the additional support he could access there.

Outcomes A summary report and an Anxiety Management Plan were written and sent to D on week 6. A telephone review was carried out on three weeks later. Amendments to the report was made and circulated to the services D felt required them.

The case was discharged from IAS on week 9 with information about how to re-refer if required sent to D and the original referrer.

Gwent Region

7 Blaenau Gwent National Autistic Society (NAS) Carers Session

The Gwent IAS and ND services held a ‘Celebrating Autism’ awareness raising day in Pontypool in March 2018. A joint presentation was organised between IAS (Gwent) & Expert Patient Program Cymru. A taster session of a bespoke management of carer stress session was presented on the day. Some attendees responded positively to this taster session and requested the full session to be delivered to members of the Blaenau Gwent branch of the National Autistic Society. This demonstrates the services ability to respond to evidence based demands.

A two and a half session for parents and carers of individuals focused on ASD was provided in an afternoon in April 2018. It provided an opportunity for carers to socialise with each other and share experiences. The course offers carers a toolkit to manage stress and provides a CD so individuals can practise the techniques that work for them at home. The course monitors self-reported feelings of stress at the beginning of the course and at the end.

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Outcome of delivery: Every person who attended the course experienced a reduction in their feelings of stress

Feedback from carers who attended the course include: “I found session today very helpful, helped me to realise I need to make time for me as a carer……” “Mindfulness will be a very useful tool for me” “I enjoyed everything and I am now relaxed and calm – great!” “CD to take home is excellent so you can continue after today” “I know how I can improvise to include this into your day or when you a get a little time to yourself”

Gwent Integrated Autism Service At a wellbeing event, I was approached by a parent, asking if I knew of anyone who could work with her son to help him understand his issues around puberty. She was delighted when I replied “Yes” and she said “Who?” I asked her to refer to the IAS and explained that is something we could offer, and actually it would be me working with her son. The referral was processed the following week. In a few sessions I worked with the young man to understand the changes he was going through in his life.

After the period of work I received the following from his mother:

“Dear S

I am writing this to say a huge Thank You.

I cannot believe how L is coping with his puberty stage since your intervention and printed Social Story.

Thank you so much for attending our home in 2017 on three occasions and sitting down with L whilst he has been struggling to come to terms and cope at this very stressful time in his life.

You listened patiently and answered L’s questions.

You prepared, printed and laminated a social story which is perfect for L to understand at this very difficult time.

As a single parent raising a teenage boy diagnosed with ASD and ADHD I cannot thank you and your service enough.

I'm no longer being bombarded with ' puberty questions'.

All the questions were adding to my anxiety as I'm in poor health myself.

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Thank you so much.

Kindest Regards”

Gwent Integrated Autism Service

A sub-group of referrals received in the IAS (Gwent) demonstrated a need to support young, autistic women with understanding relationships as well keeping safe online. In many cases, these women were recognised to be vulnerable to potential abuse and/or exploitation.

One individual (SO) self-identified difficulties in managing inter-personal relationships as well as traumatic experiences related to sex. The IAS responded to this demand by connecting with a third sector partner to deliver support to these young women. The SAFE (Sexual Awareness for Everyone) Project has been commissioned (by the Big Lottery) to deliver peer led sessions that support disabled young women to understand friendships, relationships and keeping safe online. This was delivered jointly with SAFE and the IAS in April/May 2018.

SO attended three out of the four delivered sessions and responded positively to the peer led approach. SO said that she would like to share what she had learned with other young women. The SAFE project offered SO a volunteering position and SO will help to deliver an upcoming group in the Summer of 2018. SO will also be working towards achieving an accredited Millennium Volunteering award.

Gwent Integrated Autism Service

Start Date: 08/01/18 - End Date: 21/05/18, Number of contacts: 9, Type of referral: self-referral

Agreed goals with individual:

1. To go out of the house more with the aim of developing his social skills and independence. 2. To learn how to use internet banking.

The referral came about after meeting with a parent and carer group and telling group members about the new service. The foster mother of A came along to the meeting to find out what support the IAS offers. The referral came through Multi- Disciplinary Team (MDT) and it was decided that I go and visit A to see what support he feels he needs.

Initially A was very quiet and would share very little with me. Consent was sought on first visit and I made A aware of how I could work with him and that it was towards an agreed goal. In the beginning I was spending a lot of time trying to

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build a good rapport with the individual and show interest in what his interests are. I spent a good deal of my time using ‘Person-centred thinking’ to help A to see others’ points of view and to recognise and take responsibility for how he spends his time.

The main elements of this work were: Person-Centred Thinking, Building relationships with his younger brothers and increasing confidence to leave the house. There is a big age difference between him and the younger brothers and A has found it difficult to connect with them. This is ongoing and something for A to keep working on as he still finds spending time with them difficult.

The intervention has been deemed a success by A and the family members. We went through a list of the interventions used on the final session and most were successful. The gentleman has gone from only leaving the house for college via his taxi to attending a social group on two occasions, walking the dog regularly, going into the village to purchase items and asking for forms at the post office, travelling on the bus alone to local towns including Newport. He used to spend all his time in his room except for meals and he has now addressed this and will make a conscious effort to spend more time with his family. I have researched college course options with him and encouraged him to think about his future life plans. Without my help he has managed to use online shopping and has surprised his mother with flowers on Mothers Day.

Gwent Integrated Autism Service

Case Study B

A 54 year old gentleman was referred for diagnostic assessment by his GP. He is in full time employment and manages a team. Previously married for 20yrs and he has 3 children. A new relationship for last 3 years and it was his partner who suggested that he seek an assessment as she described him as being, “Emotionally like and empty jug”. Up until this point he had not any indication that there was any problem with his emotions or social communication.

He manages a team of people in work, has a responsible job and his passion and focus is his job.

At our first meeting he was extremely emotional and upset’ that his partner had described him as ‘empty’. He had no insight into the areas of his differences, he would watch tv soaps, and would just believe that what he saw in way of social interaction, arguments etc was just how people behaved. Once he had started looking into Autism Spectrum Disorder he started to realise that he had similarities and things seemed to ‘click’.

He was given a diagnosis of Autism Spectrum Disorder. At first he felt ‘depressed’ and it took a while to ‘sink in’. but then he started to have a better understanding of

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himself. He was not sure if he should disclose his diagnosis to his children but took the decision to tell his eldest daughter, the relationship he had with her he described as ‘difficult’. He described the meeting with his daughter following his disclosure to her as “amazing” as she wasn’t surprised and she also thought she possible maybe on the Autistic Spectrum. They were able to discuss much more than the diagnosis and it has changed their relationship for the better. He is starting to have a greater awareness of himself in relation to Autism and his differences and he and his partner are working on this. He found the whole process enlightening and it has made a positive difference to his life.

Newport ASD Steering group and Tertiary Neurodevelopmental team, Specialist CAMHS, ABUHB

Virtual Groups for Parents & Carers established to deliver: • post diagnostic support virtually • to parents/carers of children with autism in ABUHB • in a timely, effective and equitable way

What were the issues we wanted to address? • Inequitable and patchy post diagnostic support • Increase demand and limited resources • Big geographical area to cover • Inappropriate use of services - present as crisis • Increased re referral rates to CAMHS • Parental anxiety and family stress

What’s the patients view of the problem? Feedback from carers- try accessing services for help with their child’s behaviour, anxiety, transition, sensory problems, friendships etc

Measures Primary  Proof of concept for virtual groups as a therapeutic intervention

Process  Physical and staffing logistics - run virtual groups (sessions, travel time, preparation time)  Staff response and anxiety

Outcome  Uptake and engagement of parents/carers (no of attendees, DNA rate)  Re-referrals to service  Parent/carer satisfaction  Evaluate clinical outcomes

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Some of the feedback from families • “People able to ask questions” • “Really useful information” • “Interaction and individual questions” • “About dealing with meltdowns” • “Strategies given to cope with meltdowns very good and helpful. More of these groups please!” • “Able to ask questions about home needs” • “Concept visualised” • “Share information” • “Relates to personal situations” • “My opinion of electronic IT has gone up” • “Relating to others as well as helpful advice with structure” • “Have the face to face professional contact” • “Time saving and access to busy people”

Please see below film developed along with families/carers about these groups: www.vimeo.com/210083636 (password: together)

North Wales Region

Autistic male, diagnosed in 2017 as an adult

W works for Conwy County Borough Council as a planning enforcement officer and is represented on the North Wales IAS operational group.

“Like many people, I suspect, my understanding of Autism was based upon characters like the Rain Man, my eyes have since been opened! I am among many who, during their adult life, have come up against issues resulting in significant stress and anxiety. I have always felt somewhat different and introverted, but due to a supportive family it has rarely been an issue. For various reasons I decided to explore whether I may be on the Autistic Spectrum, including with a view to seeking reasonable adjustments at work.

My experience of initially seeking help wasn’t great; my GP didn’t seem to recognise what are pretty clear traits, though in fairness masked as many adults do. When learning that it could be a queue of years, I decided to seek a private diagnosis. My diagnosis, though important, really just confirmed what I already knew after intensive reading of various books, websites, etc, but it has been key in seeking out reasonable adjustments at work.

However, this increased self-awareness, through absorbing the plethora of useful information out there, lifestyle changes and accepting myself for who I am, has resulted in considerable improvements in my health and wellbeing.

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I am now a volunteer with the Integrated Autism Support Team in North Wales and I hope to help others through my experiences.

It really concerns me that access to diagnosis is so slow for the vast majority, but thankfully there is now positive action in hand to help address this. However, diagnosis is only one part of the work that is needed. Working with what we have, by pulling together and supporting dedicated and hard working professionals is key to helping those on the Spectrum, who may otherwise fall between the cracks and end up in crisis. Diagnosis, pre/post diagnostic support, awareness raising, signposting, training, providing information (e.g. the excellent resource that is the ASDinfoWales website) and so on are all vitally important in my view and can’t come soon enough.”

Powys Region

Powys Integrated Autism Service

A client received a piece of joint work with the main aims of increasing independence and to break the cycle of returns to the crisis team and admittance to the ward.

Mental health continued to support the MH needs of the client whilst the support worker’s role was to increase the confidence of the young person in accessing public transport to attend the social group without travel assistance. This was an important step on the road to independence for this person.

He went from quiet and reserved, unsure, with head slightly bowed at all times to visibly walking taller. Not quite strutting yet, but definitely far more sure of himself and rightly proud of their achievement. The young man is now looking forward to college in September and being able to attend the Social and Leisure group as and when they feel like without having to rely on others to get there.

Feedback from the individual: The client feels more confident about accessing public transport and recognises the benefits that this can bring to him on his journey to independence. He knows he can get out a little more than he had been doing of late and this helps him to feel more confident generally.

Any lessons learned: The beauty of collaborative working when each service plays to its strengths and simultaneously wraps itself around the person to provide the support they require. This was achieved by the professionals involved staying in contact with each other, but not stepping on each others toes. Having faith between services is as important as having faith between practitioners and clients.

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Western Bay

Children’s Play Team, Swansea, Western Bay

The Team deliver Open Access Play Sessions via a 40 foot play bus. Following discussions with the Play Access Group (cross-sector group addressing access to play in Swansea) and parent/carers, it was recognised that some children and young people found the confined nature of the bus, combined with noise, lights and other children to be prohibitive.

As a result, we opened up sessions aimed at those with additional needs immediately prior to our public sessions. At these we considered the equipment, sensory environment and ensured staff had an understanding of additional needs, particularly autism.

The intention was to ensure their right to access play but also to support integration as the child may well feel positive and comfortable by the initial session and choose to stay on the bus for the full public session.

Feedback from group members: We have received lots of positive feedback from parent/carers and the young people themselves were clearly engaged and enjoying their play.

Most still found the introduction of additional children to be uncomfortable, but several parent/carers said they stayed on when usually they wouldn’t have come.

Education, Swansea Council, Western Bay

Swansea Council has invested a sum of money to provide an Outreach Service to mainstream schools’ staff and pupils who are in need of support, or are at risk of exclusion due to being insufficiently resourced, trained or equipped to meet the needs of pupils with a diagnosis of autism. The service has successfully upskilled staff in these settings so that they are able to meet the needs of the 38 pupils in 35 schools which have currently been referred across the authority within the last two terms (2017/18). A range of training, resources and ‘job swapping’ opportunities and observations have meant that staff have a better understanding of ASD and the strategies and approaches that are effective in supporting the pupils and ensuring they are part of the class and whole school. The service has been provided by a range of highly qualified and experienced staff from Ysgol Pen-Y-Bryn who alongside the autism specialist for the local authority have gone into schools and opened their doors to staff to visit a setup, well-resourced and active provision at Ysgol Pen-Y- Bryn. Pupils are identified through the Additional Learning Needs panels and forwarded to the team who immediately start supporting and intervening with a fantastic success rate.

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Feedback from group members: The feedback from schools, head teachers, parents, staff and the local authority has been incredibly positive and each case has been successful. There has been individual feedback from schools which has not only thanked the staff personally for their input which has changed pupils experiences in school and relationships with parents. It has also changed the mind-sets of staff who are now able, with the knowledge they have gained, to adapt their approaches, teaching and provision to meet the needs of pupils as they so deserve. The service has also identified a need for further support, training and provision across the authority. Regular meetings between the ASD team, ALN Unit and the Pen-Y-Bryn staff who have worked closely together mean they have prepared action plans to ensure the support continues effectively and the service is directed initially at those most in need of the intervention. Whole school training will continue to be targeted as part of this service.

Any lessons learned: It is evident that the need exceeds our initially planned capacity. As a result, more staff have become involved, trained to deliver and more staff from Ysgol Pen-Y-Bryn support staff and pupils across the authority.

Whole school training in raising awareness of ASD and approaches and strategies to support these pupils needs to continue to be a focus across all schools, so that staff are sufficiently equipped to provide the best education for each and every pupil.

Swansea Joint work between ASD Lead and Gower College Swansea

Following discussion at a local ASD steering group meeting, Gower College Swansea were keen to improve autism awareness and to take a whole college approach. Gower College Swansea is a further education college which provides further education and other training courses from several campuses and venues in the area. As ASD lead I have supported them in making a plan in becoming an Autism Aware FE setting and business.

We decided together to start with the College as an Autism Aware employer, which has involved Autism Awareness sessions for over 120 managers and supervisors across the two college campuses. All have completed the HR Autism Awareness programme and received certification.

There are plans to expand this through all staff teams and students to ensure that the college is an autism aware environment.

Feedback from group members: The sessions were received really well and enabled groups of managers to talk about the benefits of employing an autistic individual in an FE setting, as well as talking about how barriers can be removed to help recruit and support autistic employees.

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There are plans to make some adjustments to recruitment and selection and induction to help improve the opportunities to employ autistic adults in the college.

Any lessons learned: This has been a lengthy process as it takes time to ensure that people can find the time to attend sessions.

We have learnt that face to face interaction is more effective in ensuring that the key messages are received and discussed, rather than simply circulating links to training.

West Wales Region

Inclusion Early Support team, Pembrokeshire County Council Our team includes myself, an advisory teacher for autism, an occupational therapist, therapist and an outreach support worker and Speech and Language Therapy Assistants.

I organised an ASD Wellbeing conference in March of this year. The conference had a dual aim, to learn strategies to help the young person with ASD in their care and strategies to look after their own well-being also. In addition, it was hoped that we would, in this way, address growing concerns and generate discussion around the mental health and wellbeing of our young people with ASD.

The conference involved speakers from Health (paediatrician), ASDinfoWales, Educational Psychologists, a Music Psychotherapist and a person with autism. Workshops were rotational and were delivered by: Occupational Therapist (Sensory processing anxiety support), Speech and Language Therapist (looking at the language to use with ASD pupils when distressed/blank levels) and a mindfulness workshop led by a yoga teacher who is also a Speech and Language Therapist in Pembrokeshire.

The course was for parents and professionals (mainly education, some health and social care sector) and there was a good mix which was great for networking. The majority were parents. This was very well attended with 80 delegates at the conference.

Our Parent partnership service and ASD info Wales had stands, with queues of parents and professionals who talked with them.

Feedback from group members: Feedback was overwhelmingly positive. Of the 80 + attending, we had 50 returned feedback forms and all were scored the highest VERY GOOD with the exception of 7 GOOD. The feedback was largely similar across the forms. The delegates loved

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hearing the voice of the person with autism, they wanted longer in the workshops and for the event to be repeated. Some of the feedback forms were quite moving, with parents very grateful for the event and the awareness raising.

Any lessons learned: Overall a brilliant day. Strengths included the multi agency involvement, varied content and amazing networking opportunities and discussion.

To improve: Room rotation could have gone more smoothly but luckily everyone coped with a smile! Involve more people with ASD and longer workshop time.

ASD Lead (region redacted for anonymity of young people)

“Engage to Change” is a Wales wide project placing young people with autism and or learning disability in employment. Young people are placed in the workplace with a view to eventually transitioning into permanent roles. The project is run by supported employment providers. The provider cannot do this alone, it requires employers to provide places for the young people to take up. Local Authorities are among the largest employers in Wales. The ASD lead worked through senior Local Authority management to gain agreement from the HR department to engage with the supported employment provider and accept placements. A factor in achieving this was the awareness in the HR department that it had the full support of the ASD lead.

Feedback from the individual or group members: At the time of writing the first 2 young people are in place. One is placed in a location providing direct information to the public. While there she has received her “Agored Cymru” certificate in customer care. It was particularly pleasing that the staff were so willing to take her under their wing. She was invited to their Christmas do and the team involved her in their Secret Santa, so really welcomed her into the team. Another young person has been placed in the finance department. They have also been amazing, her work day has been moved to a Friday because that’s “cake day” and they also shifted Secret Santa so she could be there and be involved. So both these teams have done more than just provide a placement opportunity, positive as that would be, but have really gone the extra mile and included these young people in some of the social aspects of the work place.

Any lessons learned: It may seem hard to fit young people with disability into the work place. What this case study shows is that by engaging with agencies providing appropriate levels of support, by ensuring the buy in of senior management and by supporting the departments concerned it is perfectly possible. It is in some sense a moral responsibility on large public sector employers to lead by example and to be a work place demonstrating genuine equality. There was no resistance encountered to this approach only a desire to be supported in the implementation

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