Our Local Offer for Children and Young People with Autism

Our Local Offer for Children and Young People with Autism

Our Local Offer for Children and Young People with Autism

Executive Summary © City of York Council 2013. Cover designed by HBA, York. Printed by CYC Design & Print Solutions. 16224 Our Local Offer for Children and Young People with Autism York’s strategy for children and young people with autism WorkingtogetherwithChildren,YoungPeopleandFamilies If you would like this information in an accessible format (for example in large print, on CD or by email) or another language please telephone: 01904 554322 or email: jessica.haslam@york.gov.uk 16224 COY Autism Full Strategy 2013 Cover_Layout 1 08/08/2013 10:33 Page CV1

Our Local Offer for Children and Young People with Autism

16224 COY Autism Full Strategy 2013 Cover_Layout 1 08/08/2013 10:33 Page 1

1 Contents Page 1. Scope of the strategy 3 2. Introduction 4 3. Vision 7 4. Principles 8 5. The local authority and partners know how many children and young people with autism live in the area 9 6. Children, young people and their families are central to the planning of their lives 10 7. How we involve parents and carers in the review and planning of services 12 8. Assessment is accessible 14 9. When children and young people do not meet the criteria for diagnosis or there is a delay 15 10. Children in early years have coordinated support 17 11. Children, young people and families are supported 19 12.

Children and young people‟s learning is valued and supported 26 13. Children and young people can access community activities 34 14. Children and young people live healthy lives 36 15. Young people are supported to plan for a smooth transition into adulthood 39 16. All staff have access to appropriate training 44

2 17. Appendices 1. Policy and guidance 46 2. Key priorities from NICE recommendations and the City of York‟s response 49 3. York „pathways‟ or steps in assessment and support for children and young people on the autism spectrum 51 4. Autism: recognition, referral and diagnosis of children and young people on the autism spectrum – NICE clinical guidelines, CG128: Sept 2011 57 5. Local pathway for recognition, referral and diagnostic assessment of possible autism 73 6. References 76 7. Acknowledgement 77

3 A strategy for children with autism in York Scope of the strategy This strategy concerns children and young people with special educational needs relating to autism from 0 - 25 years of age.

We have written this with reference to the strategy for adults with autism in the city. We aim to ensure continuity and coherence between all services, making a young person‟s transition into adulthood as smooth and as well supported as possible. The children and young people’s autism strategy group The autism strategy was commissioned and written by the children and young people‟s autism strategy group. There is a strong commitment from this group to work across all agencies to improve services and support for children and young people with autism. The group is well established and has good parent representation and multi-agency involvement.

Please see the acknowledgement section on page 78 for a list of group members. The autism strategy group reports to the strategic partnership for integrated services for disabled children, which in turn reports to the YorOK Board and the Health and Wellbeing Board. Definitions Autism is a term used to describe a neurological difference in brain development that has a marked effect on how a person develops. It is a lifelong condition. It is a spectrum condition, which means that, while all people with autism share certain difficulties, their condition will affect them in different ways and to different degrees.

Some people with autism are able to live relatively independent lives but others may have accompanying learning disabilities and need a lifetime of specialist support. Throughout this strategy the term „autism‟ has been used to signify children and young people with a diagnosis of autism, which includes autism, Asperger‟s Syndrome and atypical autism. It is recognised that a variety of terms have been used in the past for this group, including autism spectrum condition (ASC) and autism spectrum disorder (ASD).

4 Introduction Significant consultation has supported the writing of this strategy. This has led to a better understanding of what works and what needs to be further developed. Parents, carers, children and young people have told us what it is like to have autism in York and how effective support has been at different stages of their lives. The learning from the consultation has been included throughout the document. It is important that it drives change forward in all areas, and that consultation is not seen as a separate activity, tagged on to service development.

. The first task in writing the strategy has been to assess what is available now for children and young people with autism across the city.

This helps to inform professional and parent/carers about the wealth of support, provision and guidance available in York. Feedback from parents, carers and professionals has identified when there are gaps or areas to develop in support for children with autism. In York we are fully committed to improving services, aiming to address the holistic needs of the child and young person. No one agency can provide the complete support. „Team York‟ is a term that describes the need for partners to work together to meet the needs of children and young people in the city. This is particularly true for those young people who have complex needs and benefit from support from several agencies.

This document details what is available now, what is planned for the next three years and the difference it will make for children, young people and families. Parents in consultation have told us that: “York give 110% and will do their best for you in comparison to other Local Authorities.”

5 Statistics The National Autistic Society (NAS) has reported a 61% increase in autism cases between 2005 and 2010. Studies have also indicated that prevalence is now thought to occur in 1% of children. Autism is also recorded as more prevalent in boys (4:1 ratio). However, recent research, Happe (2011), suggests that this may be due to females coping better with or disguising autistic traits with a consequent under- diagnosis of girls.

Approximately 70% of people diagnosed with autism may also have other difficulties impacting on their day to day lives and wellbeing. (Table 5 in the Nice Guidance contains more details.) Autism symptoms and behaviours Social problems Difficulties can arise from a poor understanding of: • social rules • use of gesture and body language • eye contact, and • social smiling. Difficulties with turn taking, sharing of pleasure with others and understanding emotions of others are often experienced. Making and maintaining friendships may be problematic for many.

It is well known that people with autism often have a delay in their appreciation of the point of view of others, described as a lack of theory of mind. Communication and language problems This may include difficulties with conversational give and take, echoing words and phrases, and having unusual tone, pitch, accent or way of speaking. Children and young people with autism may use complex vocabulary but not always understand what is said to them. They may understand and use language literally, having difficulty understanding jokes, metaphors and sarcasm. Understanding non-verbal communication, including gestures and facial expressions, can be difficult.

Some children and young people may be pre-verbal or have limited speech and use alternative/augmentative forms of communication such as PECS (Picture Exchange Communication System), signs.

Imagination delay The play of children and young people may be repetitive and they may not be able to play imaginatively with toys or other children. Poor imagination skills may also result in:  difficulties with problem solving and time perception, literal thinking and little understanding of the abstract  a tendency to focus on details and not to see the whole picture  imagining different outcomes or predicting what might happen next may be restricted

6  a limited understanding of the concept of danger e.g. that busy roads may pose a threat  stress in new or unfamiliar settings.

Sensory, repetitive or unusual behaviours These may include unusual and intense preoccupations, sensory interests and/or fears, and mannerisms or odd movements. Many people with autism process sensory information differently and may be over or under sensitive to sounds, smells, tastes, touch, and visual experiences such as bright lights or certain colours. Just like everyone, children and young people with autism have their own personalities, interests and skills, and are all individuals.

From „Oliver tells it straight‟: We, with Asperger‟s Syndrome, tend to… *Have deeply focused interests, allowing us to work exceedingly well on a narrow area of topics. For example, I am very interested in role-playing within the online game World of Warcraft. Did you know that the Arathi Honour Guard wear grey tabards when the actual colour of the city state of Stromgarde is red? Of course you didn‟t know, but if you asked me anything on the topic I would probably have an answer *Decipher the world in a way no one else seemingly bothers to. For example, I would describe opening a canned drink as having similarities to breaking the shell of a crustacean open so that one can feast upon its gory insides, which I doubt is what any other individual would think of immediately.

*We are capable of very abstract thinking which has proved to be a beneficial perk of the syndrome if you ask me.

*Struggle in communication. How we suffer in this field varies from person to person. I find that despite me being capable of discerning emotion I am not understanding of the proper way to react to such emotion, leaving me below the lower hand. Another factor that I find absolutely agonising is my inability to understand when the appropriate time to speak in a conversation is. *Find it strenuous to both make and acknowledge friends. I know a few people in my school who like me but I am never, ever, ever sure of what they actually think of me and/or whether or not I can consider them friends.‟

7 Vision “York is a city making history and its children are our future.

Every child and young person in York deserves to live their dreams. We will stretch, support, nurture and release them to do so. Working with them and their families, we will make York the best place in Britain in which to grow up.” Our Vision: from „Dream Again‟, York‟s Children and Young People‟s Plan, 2013 - 2016 Our vision for disabled young people, including young people with autism, is no different to the vision for all young people in the City of York. Specifically we aim to support young people with autism to fulfil their aspirations through employment, training and volunteering, living as independently as possible, and being active members of their community.

In York, for disabled children and young people, including those with autism, we promise to:  listen carefully to you and create improved choice by engaging you in the design of great services  offer you access to personal budgets and direct payments  introduce single plans to coordinate the best support for you to meet your education, health and care needs  provide clear information to support your choice  continue to work with your parent/carers in partnership with voluntary agencies, including CANDI, York‟s parent/carers‟ forum  make sure all staff have access to disability equality training written and delivered by you, together with professionals.

This will help staff to respond effectively to your needs  support you to access leisure and positive activities in York so you can contribute to your community  provide personalised short breaks for you, if you have complex needs  provide you with a named member of staff to help coordinate the support you need  support you as you move into adult life by providing access to employment, volunteering and education or training.

City of York Charter for Disabled Children 2013 - 2016

8 Principles The principles that underpin this document are child and family centred, based on the social model of disability. All children and young people have the right to access learning, leisure activities, health services and to be happy. It is everyone‟s responsibility to do all that they can to reduce any barriers to increase their opportunities. The principles are:  Planning for children and young people with autism must be based on „co- production‟, with the views and aspirations of children and young people central to the way in which services work with them.

 When children, young people and parent/carers are engaged in planning services, this process will be more tightly focused around meeting needs and helping to create more effective services.  All children and young people have the right to access learning, leisure, health and improve their wellbeing.  Some children and young people face barriers in accessing these opportunities. It is society‟s responsibility to do all that it can to reduce these barriers to increase their opportunities. In this context the work across partners in education, health, social care and the voluntary sector with children and young people with autism is to make it possible for them to have active, fulfilling lives.

 It is important to support young people to have high aspirations and to put stepping stones in place to help them realise their dreams.

Outcomes for children and young people with autism differ from the outcomes of their peers. Services are actively working to reduce these gaps. We know that coordinating support and working closely together will help to ensure all children and young people with autism and their families achieve their potential and are full and active members of their community. „The multi-agency team in school review supported the parents‟ and the child‟s needs. They help bring out parents‟ voices and build confidence‟ Parent consultation evening with National Autistic Society

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