Gateshead Autism Strategy 2025-2030

This autism strategy sets our priorities and plans for the next five years (2025-2030) across Gateshead's local authority, health and voluntary sector organisations.

With an overarching multi-agency Autism Board to steer the work, each priority will have its own working group. Membership across both the board and working groups will include those with lived experience as active members. The work of the Autism Board will be overseen by Gateshead's Health and Wellbeing Board.

The NHS Long Term Plan 2019, the Department of Health and Social Care (DHSC) National Strategy for autistic children, young people and adults: 2021-2026 and the National framework and operational guidance for autism assessment services all highlight the need for health and social care systems to work together. This is echoed by Gateshead residents (see Your Voice Counts ICS Autism Peer Research report (opens new window) and Involve North East - stakeholder views of autism services in Gateshead 2023 report (opens new window)), who would welcome a consistent approach across all areas regardless of where services are delivered (be it clinical, educational, or simply the high street).

People with their own lived experience are the experts and very often their voices are lost within the system. Our commitment is to make sure that autistic people, their families and allies are leading the changes needed.

Gateshead has chosen to make this an autism strategy rather than a neurodiversity strategy. Understanding in this area is developing very quickly and there are common experiences between neurodivergent people (including autistic people). It is also recognised that autistic people may also have other co-occurring health conditions, it is therefore important to consider this strategy alongside other local strategies (for example, Special Educational Needs and Disability Strategy).

This is an ambitious all-age autism strategy, and we have worked with autistic residents to identify areas to start with. We know we can do more, and this strategy aims to start working on those areas and build upon existing good practice in Gateshead.

Who is this Strategy for?

This is an all-age strategy to support autistic people who live in Gateshead. This strategy is aimed at all services and professionals in Gateshead, as well as the wider community including autistic people and their caregivers. One of the key outcomes of this strategy is that people and local organisations are clear about what is needed and expected to make Gateshead an autism friendly borough.

What is autism?

Official definitions describe autism is a lifelong developmental disability. However many autistic people do challenge the idea that it is a disability, autism is something which affects how people communicate and interact with the world. The diagnostic criteria for autism references specific challenges relating to communication and interaction, and/or repetitive or restrictive patterns of behaviours or interests.

However, brain differences in autistic people are natural variations, not deficits, disorders or impairments. Such differences vary from person to person and can lead to strengths and difficulties in different areas. For example, autistic people may have a strong attention to detail, above average technical or creative skills, ability to easily identify patterns, ability to focus attention, highly rational decision-making, a powerful memory, and a strong work ethic amongst other strengths.

Autistica has summarised some examples of the wide-ranging presentation of autism in different people, examples include:

• Have a strong preference for routine, sameness, or certainty. Autistic people might experience anxiety during times of change or uncertainty.
• Experience sensory differences. Autistic people could be over or under-sensitive to sound, touch, taste, smell, or light. It may also take longer for an autistic person to process what you are saying.
• Enjoy focused, more intense interests. Autistic people may be passionate and knowledgeable about certain topics. They may have fewer, but more specific interests. These interests can be anything, from microbiology to vintage clothing. An autistic person might find it more challenging to focus on areas that aren't their preferred topics.
• Have support needs. Every autistic person will have different strengths and areas where they could benefit from additional support.
• Communicate differently to non-autistic people. This could include differences with eye contact, or having a direct communication style, which some non-autistic people may interpret as blunt. Many autistic people can struggle to connect with non-autistic people, which can negatively affect their wellbeing.
• Have delayed or absent speech. Around one in four autistic people speak few or no words. Some autistic people may stop speaking during times of stress.
• Stim to express emotion. The term stimming derives from 'self-stimulation' and may be described in medical terms as 'restrictive and repetitive behaviour' Some autistic people stim to help manage feelings of anxiety or express emotions such as happiness or excitement. Examples of stimming include hand flapping, twirling, or rocking.

Autistic people need different levels of support (see Health and Care of People with Learning Disabilities Experimental Statistics 2020 to 2021 (opens new window)). NHS England Digital suggest about 3 in 10 autistic people also have a learning disability. Some autistic people will have high support needs, which may mean that they require full time care and support. Some people may need a bit of support with day-to-day activities, while others live fully independent lives.

It is appreciated that all autistic people are different, some people may mask autistic characteristics which can lead to mental and physical exhaustion and/or low self-esteem.

More recent research has highlighted the difference between how Autistic characteristics in women and girls my differ (see Autistic women and girls (opens new window)). Historically this has meant that fewer females receive a diagnosis compared to their male counterparts, likewise, some Autistic females have been misdiagnosed. With the right support in place, all autistic people should be able to live the life they choose.

We know that not every autistic person, has, or would like a diagnosis. Whilst for others, a diagnosis is important and affirmative. The intention of this strategy is to make positive changes in Gateshead to benefit all autistic individuals irrespective of a diagnosis or not.

Data suggests that more than one in 100 people are autistic and there are around 700,000 autistic children, young people, adults in the UK. However it is likely that the numbers are higher that this.

Some statistics

The population of Gateshead is 196,100 (2021 UK Census figures). Government prevalence surveys last estimated that around 1 in 100 people are autistic. In addition, there are an estimated 3 million family members and caregivers of autistic people in the UK (National Autistic Society).

It should be noted that data is changing very quickly particularly in relation to age and gender of people being diagnosed. In the past five years (2017 to 2022) there has been a 96% increase in autism, as highlighted by the school census as per3 - view Gateshead SEND strategy 2023-2026 (opens new window).

At the time of writing, the *total number of Gateshead residents diagnosed as autistic from the ages of 5-18 years (incl) is 1,850 people which equates to 5.6% of that total age group, Appendix III. This is likely to be an underestimate as there will be people who have a diagnosis not recorded or are waiting for an assessment. Likewise, anecdotal evidence suggests that prevalence is likely to be higher than national data suggests.

The NHS England National Autism Framework (opens new window) sets out how an autism diagnosis can serve several important purposes and why universal, equitable and timely access to autism assessment across England is important.

*Data source: Primary Care Clinical Systems (RAIDR Collection - provided by North of England Commissioning Support [NECS] Information Services)