Background This cross-sector project and the web-based resources created, address a key recommendation identified in the Scottish Strategy for Autism (2011) regarding transitions and change and the associated learning needs highlighted in the NES Autism Training Framework: Optimising Outcomes (2014). They also complement the Principles of Good Transitions and the Autism Transitions Supplement produced by the Scottish Transitions Forum and Autism Network Scotland (ANS).

ReferencesThe Scottish Government, The Scottish Strategy for Autism. Scotland: Edinburgh: The Scottish Government; 2011. Available from: http://www.scotland.gov.uk/Resource/Doc/361926/0122373.pdf [Accessed 7 January 2019]

NHS Education for Scotland, The NES Autism Training Framework for Scotland: Optimising Outcomes. A framework for all staff working with people with Autism Spectrum Disorders, their families and carers. Edinburgh: NHS Education for Scotland; 2015. Available from: http://www.knowledge.scot.nhs.uk/home/learning-and-cpd/learning-spaces/autism-spectrum-disorders.aspx. [Accessed 7 January 2019]

NHS Education for Scotland, Autism Training Framework. Optimising Outcomes: Training plan for ASD. Edinburgh: NHS Education for Scotland; 2015.

NHS Education for Scotland, Key Considerations in Promoting Positive Practice for Autism Spectrum Disorders. A Guide for Those Working in Health and Social Care. Edinburgh: NHS Education for Scotland; 2017.

Autism Network Scotland, Principles of Good Transitions 3: Autism Supplement. Glasgow: Autism Network Scotland; 2017. Available from: https://scottishtransitions.org.uk/good-practice/principles-good-transitions-3-autism-supplement-autism-network-scotland [Accessed 7 January 2019]

Brook, K. (2015) Including Autistic People : Event Accessibility

Meek, A. Building a Better Workshop (Triple As)

© NHS Education for Scotland 2019. You can copy or reproduce the information in this document for use within NHSScotland and for non-commercial educational purposes. Use of this document for commercial purposes is permitted only with the written permission of NES.

Because life happens! Collaborating to support training in Autism across the lifespan Janine Robinson1, Lynsey Stewart2 and Jennifer Shields1 in collaboration with the Transitions Steering Group3, Fiona Clarke4, David Gartland4, Cath Purdie4, Thom Kirkwood4 and Maurice Frank4

1NHS Education for Scotland; 2Autism Network Scotland; 3Transitions inter-sector steering group; 4Autism community representatives and advocates

Correspondence to: Dr Janine Robinson email: janine.robinson@nes.scot.nhs.ukBecause life happens! Collaborating to support training in Autism

across the lifespan.Janine Robinson1, Lynsey Stewart2 and Jennifer Shields1 in collaboration with the Transitions Steering Group3, Fiona Clarke4, David Gartland4, Cath Purdie4, Thom Kirkwood4 and Maurice Frank4

1NHS Education for Scotland; 2 Autism Network Scotland; 3 Transitions inter-sector steering group; 4 Autism community representatives and advocatesCorrespondence to: Dr Janine Robinson email: janine.robinson@nes.scot.nhs.uk

This cross-sector project and the web-based resources created, address a key recommendation identified in the Scottish Strategy for Autism (2011) regarding transitions and change and the associated learning needs highlighted in the NES Autism Training Framework: Optimising Outcomes (2014). They also complement the Principles of Good Transitions and the Autism Transitions Supplement produced by the Scottish Transitions Forum and Autism Network Scotland (ANS).

Aims & Objectives

1. To develop learning resources and ‘tools for the job’ for public sector staff across Scotland

2. To create meaningful and sustainable collaboration with partner organisations, autistic individuals and the wider autism community through well-considered processes that facilitate active participation, reflection and outcomes for all participants

3. To encourage the application of a person-centred approach to supporting resilience, through awareness- raising and examples of practical strategies

4. Learning from the autism community helps to address myths and assumptions so that practitioners can be aspirational for autistic individuals and do not make assumptions about previous capacity to cope with change.

Procedures

1. A literature search was conducted to establish current evidence regarding management of transitions and change

2. A steering group considered key principles of the project aims, objectives, outcomes and implementation

3. ANS arranged several drop-in sessions across 3 geographical areas with opportunities for autistic individuals and the wider autism community (i) to share their experiences of transitions, including what worked well and what could have been done better and (ii) to contribute to the development of the animation characters

4. Engagement considered the core principles outlined in the documents produced by autistic groups, e.g. Kabie Brook (ARGH) and Alistair Meek (Triple As)

5. Further (iii) focus-groups and (iv) a review by the steering group and public sector staff addressed the e-learning module content development and how accurately the resource reflected the intended learning.

Outcome

• The production and launch of two online resources for health, social care and third sector organisations

• Consultation around dissemination and response to the significant interest in extending the planned use of resources to wider

audiences, including the wider workforce, the general public and the development of resources more specifically suitable for the autism community• Feedback across participants endorse the value of the planned, iterative,

collaborative process and engagement

Thom Kirkwood, Parent and Engagement and Participation Officer, The Autism Team, University of Strathclyde, commented:

“This is a further example, following Optimising Outcomes (NES Autism Training Framework, November 2014) of a Positive

Partnership for Beneficial Outcomes approach in the co-production of this new, much awaited resource. It has ensured inclusion and

contributions from all stakeholder sectors, especially Autistic Individuals, Parents, Carers and Independent Advocacy.”

“Our collaboration with ANS, the intrinsic engagement with autistic individuals and the wider autism community, and their willingness and interest in contributing to the development of the content and characters used in the resources - have been invaluable to our work. The process has ensured that we represent as accurately as possible the lived experience of individuals, their families and carers alongside evidence of good practice.” Janine Robinson, NES, 13/11/18

The successful project highlighted that the mutual benefits and added value of collaboration with partner agencies, service users and families can only be fully realised with investment in proper infrastructure, costs, time and enabling processes tofacilitate meaningful and productive participation.

The Scottish Government, The Scottish Strategy for Autism. Scotland: Edinburgh: The Scottish Government; 2011. Available from: http://www.scotland.gov.uk/Resource/Doc/361926/0122373.pdf [Accessed 7 January 2019]

Brook, K. (2015) Including Autistic People : Event Accessibility

Meek, A. Building a Better Workshop (Triple As)

Collaboration Integral to Project Plan & Implementation: “Thank you for your patience with me. The resource is fantastic! It's incredibly well balanced, clear and concise. Definitely worthwhile, and you should be proud of it! I was fortunate enough to be of some help, and can't wait to see how things develop… Please let me know how I can help more, and I'm definitely going to stick around the resource work to try to help with development beyond the current Health and Social Care audience.”

Autistic insight: why and how? "Autistic insight is so important in order to understand and be able to empathise with the internal autistic experience. Only when we understand why transitions or change can be difficult for an autistic person can we be in a position to provide support. I have also learned that many accommodations autistic people say will help are actually fairly easy to put in place."

Challenging Myths and Assumptions: "There is still a lot of misunderstanding about autism generally. Every autistic person is different, such as having different sensory profiles, preferences, strengths and areas requiring support. We are not all Rain Man, we do not lack empathy and we don't all have special skills! It is important to treat each autistic person as the individual they are."

Language & Terminology: "I am pleased to see that identify first (autistic person), rather than person first (person who has autism), language is being used and this is the preference of most autistic people. Language is powerful and identity first language recognises that autism is an implicit part of who someone is. It should not be anything to be ashamed of and there really is no ending of the autism and beginning of the person!"

"I felt that it was important that the material is worded in a way to put people in the right mindset. The language we use impacts the view people have of each other as it can stigmatise and pathologise. So rather than talk about an autistic person not being resilient or not good at coping with change, instead talk about how to support someone to understand what to expect and what is expected of them (...which is what everyone wants really)."

Affirming Value of Participation & Impact: ‘There was definitely a thrill seeing something I had helped with draw genuine attention from such a broad variety of people - especially the range of professions; but also other people on the Spectrum, and it would be amazing to see how far it could be taken with further development!’

Conclusions “Our collaboration with ANS, the intrinsic engagement with autistic individuals and the wider autism community, and their willingness and interest in contributing to the development of the content and characters used in the resources - have been invaluable to our work. The process has ensured that we represent as accurately as possible the lived experience of individuals, their families and carers alongside evidence of good practice.” Janine Robinson, NES, November 2018

The successful project highlighted that the mutual benefits and added value of collaboration with partner agencies, service users and families can only be fully realised with investment in proper infrastructure, costs, time and enabling processes to facilitate meaningful and productive participation.

The Scottish Strategy for Autism

1

Principles of Good Transitions 32017

Autism SupplementAutism Network Scotland

Methods Aims & Objectives1. To develop learning resources and ‘tools for the job’ for public sector

staff across Scotland2. To create meaningful and sustainable collaboration with partner

organisations, autistic individuals and the wider autism community through well-considered processes that facilitate active participation, reflection and outcomes for all participants

3. To encourage the application of a person-centred approach to supporting resilience, through awareness- raising and examples of practical strategies

4. Learning from the autism community helps to address myths and assumptions so that practitioners can be aspirational for autistic individuals and do not make assumptions about previous capacity to cope with change.

ProceduresA collaborative approach was embedded within all stages of the process. Core principles of engagement outlined in documents by Autistic People’s Organisations – Kabie Brook (ARG) and Alastair Meek (Triple As) were adopted.

Outcome• The production and launch of two online resources for health, social

care and third sector organisations• Consultation around dissemination and response to the significant

interest in extending the planned use of resources to wider audiences, including the wider workforce, the general public and the development of resources more specifically suitable for the autism community

• Feedback across participants endorse the value of the planned, iterative, collaborative process and engagement

Key Outcomes & Emerging Principles of Collaboration Thom Kirkwood, Parent and Engagement and Participation Officer,The Autism Team, University of Strathclyde, commented:

“ This is a further example, following Optimising Outcomes (NES Autism Training Framework, November 2014) of a Positive Partnership for Beneficial Outcomes approach in the co-production of this new, much awaited resource. It has ensured inclusion and contributions from all stakeholder sectors, especially Autistic Individuals, Parents, Carers and Independent Advocacy.”

Collaboration Integral to Project Plan & Implementation:

“ Thank you for your patience with me. I was fortunate enough to be of some help, and can’t wait to see how things develop… Please let me know how I can help more, and I’m definitely going to stick around the resource work to try to help with development beyond the current Health and Social Care audience.”

Autistic insight: why and how?

“ Autistic insight is so important in order to understand and be able to empathise with the internal autistic experience. Only when we understand why transitions or change can be difficult for an autistic person can we be in a position to provide support. I have also learned that many accommodations autistic people say will help are actually fairly easy to put in place.”

Challenging Myths and Assumptions:

“ There is still a lot of misunderstanding about autism generally. Every autistic person is different, such as having different sensory profiles, preferences, strengths and areas requiring support. We are not all Rain Man, we do not lack empathy and we don’t all have special skills! It is important to treat each autistic person as the individual they are.”

Language & Terminology:

“ I am pleased to see that identify first (autistic person), rather than person first (person who has autism), language is being used and this is the preference of most autistic people. Language is powerful and identity first language recognises that autism is an implicit part of who someone is. It should not be anything to be ashamed of and there really is no ending of the autism and beginning of the person!I felt that it was important that the material is worded in a way to put people in the right mindset. The language we use impacts the view people have of each other as it can stigmatise and pathologise. So rather than talk about an autistic person not being resilient or not good at coping with change, instead talk about how to support someone to understand what to expect and what is expected of them (...which is what everyone wants really).”

Affirming Value of Participation & Impact:

“ There was definitely a thrill seeing something I had helped with draw genuine attention from such a broad variety of people – especially the range of professions; but also other people on the Spectrum, and it would be amazing to see how far it could be taken with further development!”

Because life happens! Collaborating to support training in Autism across the lifespan.

Janine Robinson1, Lynsey Stewart2 and Jennifer Shields1 in collaboration with the Transitions Steering Group3, Fiona Clarke4, David Gartland4, Cath Purdie4, Thom Kirkwood4 and Maurice Frank4

1NHS Education for Scotland; 2 Autism Network Scotland; 3 Transitions inter-sector steering group; 4 Autism community representatives and advocatesCorrespondence to: Dr Janine Robinson email: janine.robinson@nes.scot.nhs.uk

This cross-sector project and the web-based resources created, address a key recommendation identified in the Scottish Strategy for Autism (2011) regarding transitions and change and the associated learning needs highlighted in the NES Autism Training Framework: Optimising Outcomes (2014). They also complement the Principles of Good Transitions and the Autism Transitions Supplement produced by the Scottish Transitions Forum and Autism Network Scotland (ANS).

Aims & Objectives

1. To develop learning resources and ‘tools for the job’ for public sector staff across Scotland

2. To create meaningful and sustainable collaboration with partner organisations, autistic individuals and the wider autism community through well-considered processes that facilitate active participation, reflection and outcomes for all participants

3. To encourage the application of a person-centred approach to supporting resilience, through awareness- raising and examples of practical strategies

4. Learning from the autism community helps to address myths and assumptions so that practitioners can be aspirational for autistic individuals and do not make assumptions about previous capacity to cope with change.

Procedures

1. A literature search was conducted to establish current evidence regarding management of transitions and change

2. A steering group considered key principles of the project aims, objectives, outcomes and implementation

3. ANS arranged several drop-in sessions across 3 geographical areas with opportunities for autistic individuals and the wider autism community (i) to share their experiences of transitions, including what worked well and what could have been done better and (ii) to contribute to the development of the animation characters

4. Engagement considered the core principles outlined in the documents produced by autistic groups, e.g. Kabie Brook (ARGH) and Alistair Meek (Triple As)

5. Further (iii) focus-groups and (iv) a review by the steering group and public sector staff addressed the e-learning module content development and how accurately the resource reflected the intended learning.

Outcome

• The production and launch of two online resources for health, social care and third sector organisations

• Consultation around dissemination and response to the significant interest in extending the planned use of resources to wider

audiences, including the wider workforce, the general public and the development of resources more specifically suitable for the autism community• Feedback across participants endorse the value of the planned, iterative,

collaborative process and engagement

Thom Kirkwood, Parent and Engagement and Participation Officer, The Autism Team, University of Strathclyde, commented:

“This is a further example, following Optimising Outcomes (NES Autism Training Framework, November 2014) of a Positive

Partnership for Beneficial Outcomes approach in the co-production of this new, much awaited resource. It has ensured inclusion and

contributions from all stakeholder sectors, especially Autistic Individuals, Parents, Carers and Independent Advocacy.”

“Our collaboration with ANS, the intrinsic engagement with autistic individuals and the wider autism community, and their willingness and interest in contributing to the development of the content and characters used in the resources - have been invaluable to our work. The process has ensured that we represent as accurately as possible the lived experience of individuals, their families and carers alongside evidence of good practice.” Janine Robinson, NES, 13/11/18

The successful project highlighted that the mutual benefits and added value of collaboration with partner agencies, service users and families can only be fully realised with investment in proper infrastructure, costs, time and enabling processes tofacilitate meaningful and productive participation.

The Scottish Government, The Scottish Strategy for Autism. Scotland: Edinburgh: The Scottish Government; 2011. Available from: http://www.scotland.gov.uk/Resource/Doc/361926/0122373.pdf [Accessed 7 January 2019]

Brook, K. (2015) Including Autistic People : Event Accessibility

Meek, A. Building a Better Workshop (Triple As)

Collaboration Integral to Project Plan & Implementation: “Thank you for your patience with me. The resource is fantastic! It's incredibly well balanced, clear and concise. Definitely worthwhile, and you should be proud of it! I was fortunate enough to be of some help, and can't wait to see how things develop… Please let me know how I can help more, and I'm definitely going to stick around the resource work to try to help with development beyond the current Health and Social Care audience.”

Autistic insight: why and how? "Autistic insight is so important in order to understand and be able to empathise with the internal autistic experience. Only when we understand why transitions or change can be difficult for an autistic person can we be in a position to provide support. I have also learned that many accommodations autistic people say will help are actually fairly easy to put in place."

Challenging Myths and Assumptions: "There is still a lot of misunderstanding about autism generally. Every autistic person is different, such as having different sensory profiles, preferences, strengths and areas requiring support. We are not all Rain Man, we do not lack empathy and we don't all have special skills! It is important to treat each autistic person as the individual they are."

Language & Terminology: "I am pleased to see that identify first (autistic person), rather than person first (person who has autism), language is being used and this is the preference of most autistic people. Language is powerful and identity first language recognises that autism is an implicit part of who someone is. It should not be anything to be ashamed of and there really is no ending of the autism and beginning of the person!"

"I felt that it was important that the material is worded in a way to put people in the right mindset. The language we use impacts the view people have of each other as it can stigmatise and pathologise. So rather than talk about an autistic person not being resilient or not good at coping with change, instead talk about how to support someone to understand what to expect and what is expected of them (...which is what everyone wants really)."

Affirming Value of Participation & Impact: ‘There was definitely a thrill seeing something I had helped with draw genuine attention from such a broad variety of people - especially the range of professions; but also other people on the Spectrum, and it would be amazing to see how far it could be taken with further development!’

Published November 2014

Reprinted 2017

NHS Education for Scotland Westport 102West PortEdinburgh EH3 9DN

tel: 0131 656 3200

www.nes.scot.nhs.uk

The NHS Education for Scotland Autism Training Framework

Optimising OutcomesA framework for all staff working with people with Autism Spectrum Disorders, their families and carers.

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SCT0117216030-3 ASD Training Framework COVER.indd 1 16/03/2017 14:16

The NHS Education for Scotland Autism Training Framework: Optimising Outcomes

Training Plan for ASD

Evidence base literature search

Steering groupmeetings

Community Drop-in sessions & Focus groups

A collaborative approach was embedded within all stages of the process. Core principles of engagement outlined in documents by Kabie Brook (ARG) and Alastair Meek (Triple As) were adopted.