Autism is a lifelong, developmental disability. It affects how a person communicates with and relates to other people and how they experience the world around them.
Autistic people see, hear, and feel the world differently to other people. If you are autistic, you are autistic for life; autism is not an illness or disease and cannot be 'cured'. Often people feel being autistic is a fundamental aspect of their identity.
Autism is a spectrum condition. All autistic people share certain difficulties but being autistic will affect them in different ways.
Some will have learning disability, mental health issues or other conditions. It means people need different levels of support. All people on the autism spectrum learn and develop. With the right sort of support, all can be helped to live a more fulfilling life of their own choosing.
Adult Autism Friendship and Support Group
This is a friendship and support group for autistic adults and their families and friends.
They meet once a month at:
- Oxford Centre (typically third Tuesday of the month 1pm to 4.30pm)
- Wallsend Library in the Ark Royal Room (typically first Tuesday of the month 1pm to 4.30pm)
- Tynemouth Scouts Hut in North Shields from 1pm to 4pm (typically the second Tuesday of the month)
These are drop-in sessions, so people can come along and stay for as long as they want. There is free tea and coffee available
By listening to you, supporting you and respecting you as an individual, we can work together to make things better for everyone.
For more information please contact waynetaylor@autismbettertogether.org
North Tyneside Autism Strategy 2021-2026
This strategy was written by a focus group of people who are committed and dedicated to building an inclusive community for autistic people. This included:
- People with autism
- Family carers
- Organisations that support people with autism and their families
- Health and social care professionals
- Education professionals
Throughout the course of this strategy, we use the term 'autism' as an umbrella to cover the range of diagnostic terms that exist to describe autism profiles, such as 'Autism Spectrum Disorder (ASD)', 'Autism Spectrum Condition (ASC)', 'Asperger Syndrome' and 'classic autism'.
National and Local Information
National
Autism is much more common than most people think. There are around 700,000 autistic people in the UK - that's more than 1 in 100. People from all nationalities and cultural, religious, and social backgrounds can be autistic, although it appears to affect more men than women.
- Autism does not just affect children. Autistic children grow up to be autistic adults.
- Autism is a hidden disability – you cannot always tell if someone is autistic.
- While autism is incurable, the right support at the right time can make an enormous difference to people's lives.
- 34% of children on the autism spectrum say that the worst thing about being at school is being picked on.
- 17% of autistic children have been suspended from school; 48% of these had been suspended three or more times; 4% had been expelled from one or more schools.
- At least one in three autistic adults are experiencing severe mental health difficulties due to a lack of support.
- Only 16% of autistic adults in the UK are in full-time paid employment and only 32% are in some kind of paid work. In 2021 the National Autistic Society stated
- More than two in three autistic adults don’t get the support they need
- Only 14% said they had enough mental health services in their area
- 50% of parents said they had to wait more than a year for support at school
Local Picture
The population of North Tyneside is 205,985 (2011 Census). Based on the indication that 1.1% of the UK population is autistic, it is estimated that there are over 2,265 autistic people in North Tyneside (applying this prevalence rate to the Office for National Statistics population estimates in 2016).
There are 186 people (both children and adults) known to social care with an autism diagnosis at June 2021.
Overall numbers for people with autism spectrum disorder are expected to increase over the next 5 to 15 years.
The North Tyneside school census in January 2021 found we had 481 young people with an autism spectrum disorder assessed need identified with special education need or disability support or an education health and care plan (EHCP). From our education recording system in May 2021 there are 308 young people with autism spectrum disorder as their primary needs
Both nationally and within North Tyneside schools the highest prevalence of need amongst those with SEN Support is for speech, language and communication needs. The second highest prevalence nationally is for those with moderate learning difficulties, whereas in North Tyneside it is for social, emotional and mental health needs.
Within the EHCP cohort, the most common need both nationally and in North Tyneside schools is autism, followed by speech, language and communication needs.
In the January 21 school census (in North Tyneside maintained schools and academies) there were 347 children with an EHCP and primary need recorded as ASD. 16 in foundation stage, 54 in KS1, 108 in KS2, 102 in KS3, 54 in KS4 and 13 in KS5. There were a further 134 SEN support pupils, in the January 20 school census, have ASD recorded as their primary need. 12 in foundation stage, 12 in KS1, 48 in KS2, 40 in KS3, 13 in KS4 and 9 in KS5.
Our Vision and our aim
Our vision is to work with people with autism and their families to make North Tyneside an inclusive place, where autistic people of all ages have the same opportunities as everyone else, and where they and their families feel supported. We want people to feel optimistic about their future and able to contribute to their communities.
Our Aim The aim of this strategy is to ensure autistic children, young people, and adults and their families can have the same life chances as others in North Tyneside. This strategy provides focus and clarity on the local priorities for improving services and support for these people over the next five years. We are committed to continuing to listen to people and that autistic people and their families will be at the heart of everything we do
Why do we need a strategy?
The Autism Act 2009 says we need to make services better. It tells us that not all autistic people get the support they need, we have also heard this from local organisations and from the conversations we have had with local autistic people and their families.
The policies we have detailed below, help to give us direction but more importantly we have listened to local people, so we know what is important to them and what needs to change for North Tyneside residents.
This strategy has been informed by:
- Health and Social Care Integration and Innovation – working together (2021) – services working together to support autistic people.
- The Autism Act 2009 places a duty on the Secretary of State for Health and Social Care to publish a strategy for meeting the needs of autistic adults in England, and to review it from time to time.
NHS Long Term Plan
The NHS Long Term Plan was released at the beginning of 2019. This has highlighted learning disabilities and autism among the key priorities for NHS services over the next 5-10 years and sets out a series of commitments to improve the services and support currently being provided.
The Long Term Plan also makes it clear that carers should not have to deal with emergencies on their own. It also makes specific reference to the need to prevent young carers struggling on their own with difficult and multiple challenges.
In November 2019, the Government announced the introduction of the Oliver McGowan Mandatory Training in Learning Disability and Autism for all health and social care staff, relevant to their role, this is still being considered but has been delayed due to the national pandemic.
The Local NHS 3 Year plan, makes a commitment to:
Year 1 (2021/22)
- Agree the North Tyneside community offer for people with autism or suspected to have autism pre diagnosis and explore how we jointly work across health and social care within a multidisciplinary model of service delivery.
- Enhance information and advice offer for people with autism
- Improve pathways of care for hospital discharge and placement planning for people with an autism only diagnosis
- Develop the autism workforce plan to inform the Integrated Care System in addition to placed based workforce planning, including working with providers.
- Develop a training plan with a particular emphasis on changes to the Mental Health Act and Liberty Protection Safeguards
Year 2 (2022/23)
- Implement the Community Model for Autism
- Crisis response with early intervention
- Post diagnostic support for young people
Year 3 (2023/24)
- All autistic residents in North Tyneside have an allocated key worker
Outcomes focus rather than diagnostically lead
North Tyneside partners acknowledge there are some perceived concerns from individuals and their families in accessing an Autism Diagnosis. This strategy supports people both pre and post diagnosis and whilst a diagnosis is important for individuals and families, a diagnosis may not necessarily change the outcomes for an individual.
The model being developed is not driven by a diagnosis. It is a person-centred outcomes model, with early help and early intervention being critical to understanding the outcomes for an individual and their family.
We have begun to pilot this approach by having early help workers placed in Children and Adolescent Mental Health Service, who offer individual support packages to families where the threshold for Children and Adolescent Mental Health Service was not met; therefore, working with the family to support managing the presenting behaviours within the family, not focussing on if there is a diagnosis or not.
We aim to further shape this approach through consultation with families
The NHS Operational Delivery Network which is a strategic group of Clinicians and Social care professionals and Commissioners have developed an Autism Pathway, this is a group that covers the North East and North Cumbria ODN, their role is to enhance quality of care, improve access, reduce inequality. The ODN has created an overarching toolkit which has 16 measures and standards and 11 recommendations to streamline the Autism pathway.
ADASS/ LGA Outcomes and Improvement framework
This supports adults with learning disabilities and autism to have better lives and makes the following recommendations:
Challenging inequalities
- ADASS should engage with DHSC and NHSE to ensure that the needs of people with LD are met fully by the next phase of the COVID vaccination programme, building on their experience to date.
Co-producing better support
- Councils and their sector partners should ensure that their planning out of lockdown, and subsequent decision making reflects the voices of this community and works with it to co-produce better and more resilient support arrangements.
- The pandemic fuelled innovation. Councils and their partners should learn the lessons from this and review commissioning and service provision in the light of what worked.
- There is a need for greater awareness of learning disability and autism in the wider workforce e.g. housing that needs to be developed and strategic re-alignment – from buildings and services to opportunity and community.
- Councils and their sector partners should consider moving away from a heavy reliance on building-based services, investing instead in a more diverse set of opportunities for enablement and independence in communities. This shift will include appropriate use of new technologies and support for micro-providers.
Supporting indpendence
- Established opportunities for supported employment may reduce following the pandemic. Councils and their partners need to ensure these are sustained. This will require a stronger focus on transition planning into adulthood.
Sector-led improvement – promoting new ways of working
- National and regional professional and improvement organisations should move quickly to facilitate sector-led improvement processes, including benchmarking and guidance for place and asset based commissioning
Developing our Plan
We have worked hard for over a year to bring together people, families, professionals, and services to help us to understand what we are getting right and what needs to change.
We have brought people together to map out what we have, how it works, what people value and what gets in the way of providing great support to people and families when they need it.
This has given us a great basis to work from and a fundamental understanding of what needs to change. Together we have identified six priorities that are grouped into three areas we need to achieve to make a difference. These priorities will be our focus for the life of this strategy and move us firmly towards a better future for autistic people in North Tyneside.
For example:
- What could we do better – working with schools’ inclusion, understanding Education, Health and Care Plans (EHCP’s), not needing a diagnosis, more online support, accessing services differently learning from the pandemic.
- What we need – earlier intervention and self help and support pre and post diagnosis
- What we would like – a simpler system, services working together, to “tell our story once”, to have things available when we need them, to develop this together and to be listened to.
Our Priorities
We have identified six high-level priorities from the co-production work we have carried out so far. We want autistic people and their families to be at the heart of everything we do.
Awareness raising
Although we heard examples of universal support being exemplary in what they delivered to all members of the community, we need to build on this. People and families had many experiences of both services and communities who did not know about autism and therefore couldn’t even attempt to make reasonable adjustments for them to take part in or have access to what should be available to all.
We know many people don’t need specialist services, however they require universal services, schools, and communities to think differently and openly about how they support and welcome all citizens.
Good support
Through working together with people and families we have consistently heard that we need to offer clarity of referral routes, dedicate more to early identification and awareness, and ensure we have less waiting time for referrals to clinicians for diagnosis.
All parties involved said we needed to work on the waiting times for assessments as they can be often over a year long – we need to understand the workforce and issues concerned with this and bring together the system work on solutions.
And access good support pre and post diagnosis.
Understanding yourself
We heard from people who said that they completely understand how being autistic affects the needs they have and the types of environments they need to thrive. However, for some people this didn’t happen until many years after being diagnosed and them having to struggle with how they felt about the different ways in which they experience life compared to others.
For some people they then had an opportunity through people they met, or when they attended a group, to explore why they felt the way they did. They explained the value in meeting others who shared the same experiences and being given the space and tools to explore how to feel included and supported. This understanding was fundamental to autistic people and their families being able to cope and live a good a life.
Although providing better information that is easily accessible is needed, we heard that for some people they don’t really know what might help them or what they need. Talking to others about how they have approached challenges might help in this area.
We want to make sure these things don’t happen by chance and that all people have opportunities to explore this in a safe way for them.
Be listened to
We heard from people and families about individual workers, or teams and services that have been the lifeline they needed to get though some of the most challenging times, where people felt respected, supported, and listened to.
However, on too many occasions we heard that people and families do not feel they are listened to and their needs are not taken seriously. They have felt they have had to repeat their story and have not been believed when they have raised concerns, which has delayed the right support being available, they would like to “tell their story once”. This also has a very damaging effect of the trust people and families hold towards the system.
We want all people and families to be supported at the earliest opportunity, and we want services to work in partnership with people and families so people can have happy, healthy, fulfilled lives in communities.
Support through life changes
The North Tyneside pathway must take account of all life changes.
Transition from children’s to adults services is a common place where we see things starting to unravel for people, we need to make sure this point in time is well thought out and supported.
Autistic adults may need support through different life changing events, such as starting work or college; moving to a new house; new relationships or changes to support.
We know that with good support in these times, crisis can be averted, and people can make changes more smoothly, both big and small
Inclusive communities
We want North Tyneside to be an autism friendly areas.
We heard of some great examples of spaces that encourage all people to come together to learn, play and explore, without judgement. We need this to be mirrored across the communities that we live in, and within our schools. We want this to be the model for North Tyneside.
We heard examples from people of children and young people not having the support they need and not feeling included or welcome in the spaces they attend, this included schools. The national pandemic has brought attention to how we can deliver things differently and we need to build on this learning going forward.
Making our plan happen
An action plan has been developed to support this strategy. The plan outlines the key actions that will be taken to address each of our priority areas. This plan will be reviewed and updated yearly.
We recognise that we have a long way to go and that the priorities or starting points may be different for children and adults.
Leads have been identified for all of the priority areas. These leads will be responsible establishing a working group and for making sure that work progresses, they will provide regular updates to the Learning Disability Care Forum and the Health & Wellbeing Board.
We will publish a ‘Plan on a Page’ so that people know what we are working on and this will be updated annually.
Safeguarding will be an overarching priority that we will consider throughout this work
Governance
A steering group has been established to oversee this work. This consists of the Learning Disability Integration Board. All organisations involved are fully committed to delivering this plan and will ensure the plan is adopted and the relevant people are held accountable.
Additional task and finish groups will be established to progress each priority and area of work that has been identified in our plan, the lead for each group will be required to report on progress to the steering group.
A reference group of people with autism and carers will be established to support this work.
This plan was ratified by the Health and Wellbeing Board on 16th September 2021 and the Children’s Board on the 20th September 2021. This strategy will be delivered through a delivery plan which will contain detail about what will be done, by whom and by when. It will be refreshed annually.
The strategy and delivery plan will be overseen by the Learning Disability Integration Board. This board will take which will take a leadership role for ensuring the delivery of the key pieces of work which are needed to implement our priorities.
Autism is considered in several areas within North Tyneside, including the Future Care Board, the SEND Strategic Board; Whole Life Disability Board; Working Age Mental Health Board; Carers’ Partnership Board; and Living Well Locally.
We need to strengthen links and communication with the following services. • Drug and alcohol • Mental health
- Public Health
- Homelessness,
- Suicide prevention
- Criminal justice
- Employment
- Community groups and providers
Collaboration with these boards/groups and services will be required to ensure the needs of people with autism and their families, are being fully considered and addressed. Relevant actions from our delivery plan may also need to be incorporated into the work plans of these other boards.