Autism (health and wellbeing needs in South Tyneside)
Introduction
Autistic individuals have a neurological difference that means they perceive, experience and interact with the world, communicate and socialise differently.
Autistic people share three main areas of difference:
The Autism Spectrum is not linear and while there may be some commonalities between autistic people, each should be viewed as a unique individual with strengths and differences that should be valued and supported.
Autistic people may have different support needs dependent on the environment.
Autistic people may have additional needs that arise from other conditions and differences. Examples of these differences are eating and sleeping patterns, and cooccurring conditions such as development coordination disorder, hypermobility, and mental health conditions.
Autistic people have strengths and differences in sensory processing and integration for example being hyper (over) or hypo (under) sensitive to sensory input, for example sound, touch, taste, smells, light or colour.
Autism is classified as a disability, defined by the as it has a long-term substantial effect on the individual's abilities to carry out day to day activities.
Not all autistic people will view themselves as being disabled.
National guidelines
The National Institute for Health and Care Excellence (NICE) has published guidance on autism which covers the recognition, referral, diagnosis, and management of autism in children, young people and adults:
Earlier Department of Health guidance and other documents
National Autistic Society guidance documents
Other Documents
Although published in 2009, and therefore somewhat dated, the National Audit Office Report 兔子先生ing People with Autism Through Adulthood remains one of the most important statements in relation to social policy and adult autism in the UK.
The report also presents some of the potential benefits and cost savings to be gained from better provision and specialised services.
Key issues
South Tyneside is around 25 square miles (64 square kilometres), with a population of around 149,000 residents in 2022.
It is one of the most deprived areas in England (ranking 12th of all English local authorities).
There are approximately 1,600 people who have a diagnosis of autism only in South Tyneside (2023).
There are approximately 350 people in South Tyneside who have a diagnosis of autism with a learning disability.
Feedback from residents accessing the Autism Hub indicates that experience of services, level of support and people's understanding of autism varies, which can impact on their quality of life and that of their families.
Whilst autistic adults report that lack of understanding can lead to feelings of isolation, vulnerability, and affect their mental health, they feel that some of this could be alleviated through training and awareness raising with professionals, workplaces, and the wider community.
Families have told us that when asked why they are seeking a diagnosis, this has often been at the suggestion of their child's school. Some families believe that if they have a diagnosis for their child, it will help them to access support they need within an educational setting.
Health data tells us that there were 1,444 males and 467 females listed within primary care. From that, ethnicity recorded shows that:
- The highest ethnicity was recorded as british or mixed british, with 681 males and 217 females.
- Of the long-term conditions recorded (see Level of need), anxiety remains the highest prevalence in autistic adults.
From the data, it is apparent that there is a disparity between males and females with regards to prevalence.
Further work may be required to explore how support within the community can be developed for those who do not meet the , and how to prevent more formal intervention being required.
Level of need
The figures below indicate the recorded number of South Tyneside residents diagnosed with autism and / or learning disabilities. The number of individuals with autism is compared to other neighbouring areas. The data should be interpreted in the context of overall population size.
The data below comes from GP clinical systems, as extracted from RAIDR (Rapid Actionable Insight Driving Reform) system. It therefore only includes those patients with autism and / or learning disabilities known to primary care.
Data shown is as of June 2022, the full year data for 2023 is not yet available, therefore the most recent information for the full year has been used.
Local
South Tyneside
- 1,578 people with autism only.
- 907 people with learning disabilities.
- 348 people with learning disabilities and autism.
Regional
Sunderland
- 3,765 people with autism only.
- 1,822 people with learning disabilities.
- 998 people with learning disabilities and autism.
County Durham
- 5,554 people with autism only.
- 3,351 people with learning disabilities.
- 935 people with learning disabilities and autism.
North East and North Cumbria
- 0.8% (23,900 people) of the population have a learning disability recorded.
- 1.1% (35,520) are autistic.
- Of these, 5,750 are autistic and have learning disabilities.
Expected prevalence
- Learning disabilities 2%+.
- Autism global prevalence estimated at 1.04%; children in UK 1.6%.
Age statistics
- 17% of autistic people recorded are male and aged 10 to 14. This is also the age band with most females with autism. The mean age of patients with diagnosed autism is half that of the population as a whole.
- A large proportion of people diagnosed with autism are between 5 and 9 yrs olds. From that stage, there is steady decline in diagnosis by age, significantly decreasing from 20+ onwards.
- 74% of autistic people are male.
- Autistic people are likely to have been diagnosed more recently than someone with a learning disability, with around 26% of autistic people having had their diagnosis for 10 years or more.
- Based on date of the earliest code on the patients' GP clinical record that puts them on the learning disabilities or autism register. Patients may have received a diagnosis prior to this in another setting.
- A quarter of autistic patients received a diagnosis before their 5th birthday, and 54% before they turn 10.
More information on learning disabilities data can be found in the Learning Disabilities JSNAA.
Children known to SEND Services in South Tyneside
In South Tyneside, the school census identifies the following areas of primary need across Education Health and Care (EHC) Plans and Special Educational Needs (SEN) 兔子先生.
EHC Plans | SEN 兔子先生 | |||||||||
---|---|---|---|---|---|---|---|---|---|---|
2019/20 | 2020/21 | 2021/22 | 2022/23 | % change 2019-23 | 2019/20 | 2020/21 | 2021/22 | 2022/23 | % change 2019-23 | |
Autism Spectrum Disorder | 267 | 333 | 381 | 418 | 57% | 216 | 247 | 290 | 387 | 79% |
Moderate learning disability | 188 | 147 | 127 | 115 | -39% | 598 | 596 | 629 | 610 | 2% |
Severe learning disability | 109 | 119 | 126 | 144 | 32% | 8 | 11 | 7 | 8 | 0% |
Social, emotional and mental health | 124 | 144 | 149 | 154 | 24% | 763 | 832 | 880 | 927 | 21% |
Speech, language and communication needs | 80 | 82 | 89 | 97 | 21% | 816 | 857 | 872 | 828 | 1% |
Children and young people with special education needs and disabilities
Data taken from the school census 2022 / 2023 tells us that; nationally, there are 1,183,384 pupils in schools who have identified SEN needs without an Education Health Care Plan (EHCP). this is an increase of 4.7% from 2022.
There are 389,171 pupils who do have an Education Health Care Plan (EHCP), an increase of 9.5% from 2021 / 22.
This gives the total number of children and young people who have special educational needs (SEN) as 1,572,555.
Using the same data (school census 2022 / 23) the published South Tyneside figures are:
SEN support / SEN without an EHC Plan: 3,960
EHC Plans: 1,105
Total SEN: 5,065
The table below displays comparative analysis with regards to national, regional, and local SEN need, derived from the school census.
South Tyneside currently has a higher rate of children and young people requiring SEN support. This trend has been consistent over the last four years.
SENT 兔子先生 and EHCP - School Census | ||||
---|---|---|---|---|
% of pupils with EHC Plans | ||||
South Tyneside | 4.1% | 4.3% | 4.6% | 4.8% |
North East | 3.5% | 3.8% | 4.1% | 4.6% |
Statistical neighbours | 3.3% | 3.7% | 4.1% | 4.5% |
England | 3.3% | 3.7% | 4.0% | 4.3% |
% of pupils at SEN 兔子先生 / SEN without an EHC Plan | ||||
South Tyneside | 16.6% | 16.9% | 17.6% | 17.2% |
North East | 12.8% | 12.9% | 13.5% | 13.9% |
Statistical neighbours | 13.8% | 13.8% | 14.3% | 14.9% |
England | 12.1% | 12.2% | 12.6% | 13.0% |
Academic year (School Census) | 2019/20 | 2020/21 | 2021/22 | 2022/23 |
Adults with autism
In South Tyneside, 2022 / 23, there are approximately 798 people aged between 18 and 65 with a formal diagnosis of autism. To note, rates are lower in the 60+ age due to historically poor diagnosis rates.
The number of autistic females nationally is thought to be under-diagnosed; it is widely acknowledged that autistic women present differently to men which may be contributing towards this.
Autism JSNAA Data | ||
---|---|---|
Data Required | Parameters Used | 2023 End |
Number of people known to local authority | People with active autism recorded as a condition | 128 |
Number of people in residential / nursing care in and out of borough | People with active autism recorded as a condition | 28 |
Number of people in ISLs | People with active autism recorded as a condition | 44 |
Number of people in Shared Lives | People with active autism recorded as a condition | 13 |
Number of people in day services | People with active autism recorded as a condition | 23 |
Number of people S117/CHC funded | People with active autism recorded as a condition | 14 |
Number of people in alternative services | People with active autism recorded as a condition | 6 |
The data presented above is from the local authority system.
The overall number of individuals with autism known to the local authority has been broken down into domain. The 6 individuals known to "alternative services" comprise of various services such as transport.
Autistic people in inpatient beds
There are currently 4 adults in inpatient beds with an autism diagnosis, no children. This figure has remained relatively stable over the last 2 years.
There have been approximately 12 people utilising inpatient beds over the previous 2 years to date. In terms of admission, the individuals being admitted changes relatively quickly, however, usage has remained stable.
It is worth noting that secure beds and beds for children and young people are commissioned differently. Therefore, this data is not included within these figures.
Co-conditions
Co-conditions linked to the (asthma, diabetes, epilepsy, oral health and mental health) shows that regionally people who have a diagnosis of autism (without a learning disability) have lower prevalence rates of diabetes and epilepsy.
However people with autism only diagnosis have higher rates of anxiety disorder than those without autism.
Data extracted from GP clinical systems reported into the North East Commissioning Service (NECS) period covering 2022 / 2023.
Data specific to South Tyneside (below - code 00N), sets out the local demographic based on the Core20+5 for the year April 2021 to March 2022 (latest full year data is not yet available).
Autism Patients with a Long-Term Condition (LTC): Diabetes | ||||||||||||
---|---|---|---|---|---|---|---|---|---|---|---|---|
CCG | Apr 21 | May 21 | Jun 21 | Jul 21 | Aug 21 | Sep 21 | Oct 21 | Nov 21 | Dec 21 | Jan 21 | Feb 21 | Ma 21 |
00L (Northumberland) | 23 | 25 | 25 | 25 | 24 | 24 | 25 | 25 | 24 | 25 | 27 | 27 |
00N (South Tyneside) | 34 | 34 | 34 | 35 | 36 | 36 | 37 | 38 | 39 | 39 | 41 | 42 |
00P (Sunderland) | 63 | 65 | 65 | 64 | 67 | 67 | 70 | 74 | 74 | 77 | 78 | 81 |
13T (Newcastle/Gateshead) | 84 | 86 | 85 | 87 | 90 | 89 | 91 | 94 | 95 | 95 | 96 | 114 |
99C (North Tyneside) | 37 | 37 | 38 | 38 | 39 | 39 | 39 | 39 | 36 | 41 | 41 | 53 |
Autism Patients with a Long-Term Condition (LTC): Epilepsy | ||||||||||||
---|---|---|---|---|---|---|---|---|---|---|---|---|
CCG | Apr 21 | May 21 | Jun 21 | Jul 21 | Aug 21 | Sep 21 | Oct 21 | Nov 21 | Dec 21 | Jan 21 | Feb 21 | Ma 21 |
00L (Northumberland) | 51 | 52 | 52 | 54 | 53 | 55 | 55 | 55 | 54 | 54 | 53 | 129 |
00N (South Tyneside) | 58 | 60 | 61 | 64 | 64 | 62 | 63 | 64 | 67 | 67 | 66 | 66 |
00P (Sunderland) | 191 | 191 | 194 | 195 | 197 | 197 | 200 | 202 | 205 | 206 | 209 | 215 |
13T (Newcastle/Gateshead) | 141 | 143 | 138 | 148 | 153 | 129 | 157 | 157 | 160 | 158 | 155 | 178 |
99C (North Tyneside) | 55 | 57 | 60 | 62 | 63 | 63 | 64 | 65 | 60 | 68 | 67 | 96 |
Autism Patients with a Long-Term Condition (LTC): Atrial Fibrillation (AR) | ||||||||||||
---|---|---|---|---|---|---|---|---|---|---|---|---|
CCG | Apr 21 | May 21 | Jun 21 | Jul 21 | Aug 21 | Sep 21 | Oct 21 | Nov 21 | Dec 21 | Jan 21 | Feb 21 | Ma 21 |
00L (Northumberland) | 3 | 4 | 4 | 4 | 4 | 4 | 4 | 4 | 4 | 4 | 4 | 8 |
00N (South Tyneside) | 3 | 3 | 4 | 4 | 4 | 4 | 5 | 5 | 5 | 5 | 5 | 5 |
00P (Sunderland) | 5 | 5 | 4 | 5 | 5 | 6 | 5 | 5 | 5 | 6 | 6 | 6 |
13T (Newcastle/Gateshead) | 3 | 3 | 3 | 3 | 4 | 6 | 6 | 6 | 6 | 6 | 6 | 10 |
99C (North Tyneside) | 3 | 3 | 4 | 4 | 4 | 5 | 6 | 6 | 5 | 6 | 5 | 6 |
Autism Patients with a Long-Term Condition (LTC): Anxiety | ||||||||||||
---|---|---|---|---|---|---|---|---|---|---|---|---|
CCG | Apr 21 | May 21 | Jun 21 | Jul 21 | Aug 21 | Sep 21 | Oct 21 | Nov 21 | Dec 21 | Jan 21 | Feb 21 | Ma 21 |
00L (Northumberland) | 254 | 259 | 265 | 269 | 273 | 277 | 276 | 282 | 289 | 297 | 306 | 1060 |
00N (South Tyneside) | 367 | 376 | 379 | 384 | 385 | 384 | 385 | 390 | 401 | 406 | 414 | 422 |
00P (Sunderland) | 667 | 677 | 689 | 698 | 704 | 710 | 720 | 731 | 747 | 754 | 768 | 791 |
13T (Newcastle/Gateshead) | 805 | 835 | 824 | 863 | 877 | 878 | 894 | 922 | 958 | 985 | 995 | 1202 |
99C (North Tyneside) | 320 | 326 | 344 | 350 | 357 | 361 | 365 | 372 | 308 | 392 | 409 | 548 |
In accordance with Core20+5 for children and young people, which displays the key clinical areas of health inequalities, South Tyneside is in the lower average percentile across the regions for prevalence in 4 key areas.
The data has been extracted from GP clinical systems reported into the North East Commissioning Service (NECS).
Issues for autistic people, local 'voice'
Health and social care
Autistic people report that not being able to get a diagnosis causes anxiety and frustration.
Misdiagnoses can contribute to mental health difficulties and problems for people.
There are examples of people receiving late diagnosis (for example when people are aged 40+).
People told us that obtaining a diagnosis creates better recognition and treatment under the Equality Act. It enables people to access appropriate services and is cost-effective, such as for mental health inpatient services.
Whilst progress has been made in relation to greater awareness, understanding and recognition of autism, there is still more to do.
Autistic adults have highlighted that professionals across disciplines and organisations often lack knowledge about autism and autism specific services to refer patients to seek a diagnosis.
A range of training would be beneficial for staff, and this would require to be tiered according to role and involvement with people with autism.
Autistic people told us that it is often difficult to navigate systems and when they are able to, there is lots of information that they can often struggle to digest.
Feedback from work with the Autism Hub and the local authority's Strategic Carers Liaison Officer reflected how challenging it can be for people to care for autistic relatives (both children and adults).
Following some group meetings in a cross-section of families and adults, themes arising from the feedback are listed below:
- Believe us: Parents sometimes feel that their views are not listened to / believed. Parents reported that masking can contribute to varying presentation in a school setting and that school's views are considered above their own.
- Only ask us to tell our story once: Professionals to become more effective in communicating so that residents don't have to repeat their story. Whilst residents recognised that some information may have to be repeated, professionals to make best use of existing information (i.e. for child's history).
- Communicate clearly: Professionals to recognise and appreciate individual's other commitments; if a practitioner is not able to make an appointment, then this is communicated as soon as possible.
- Keep things simple: Make changes to the system to ensure things are as straight forward as possible.
- Proactive support: It would be good to have more support available without a diagnosis.
Housing
There is currently a lack of suitable accommodation in the borough for autistic people.
Similarly, to the national landscape, housing provision has been historically challenging to secure.
Choice can sometimes be limited, and available provision tends to be shared independent supported living schemes that can be unpopular and difficult to let.
The local authority current accommodation offer shows there to be:
- An over reliance on costly residential placements, many of which are out of borough and do not support independence or the 兔子先生's commitment to the transforming care agenda.
- Poor / limited availability of good quality supported accommodation to meet the needs of autistic people.
- A reliance on a "shared lives" option that does not promote longer term independence.
With that in mind, there are two specialist housing sites which are currently developed; one which will provide 10 bungalows specifically for people with autism, whilst the other will provide 5 bungalows and a block of 6 flats for those with learning disabilities and / or autism.
People moving into the accommodation will become tenants of Karbon Homes and will have an assured tenancy. The developments will be available in Autumn / Winter 2024.
There are also 3 new extra care schemes being developed across the borough which will provide much needed modern accommodation for people of all ages (18+) and all needs. The accommodation will be vibrant and open to the wider community with bistro style cafes and facilities. The builds are sequential with the first scheme being available late 2026.
The local authority has prioritised the following areas to be actioned across 2023 to 2024:
- Co-produce an all-age 兔子先生 Strategy for people with care and support needs
- The development of a landlord framework to continue to support quality, new accommodation options to meet the needs of local people, ensuring the optimisation of external funding.
- A review of the current stock and needs to ensure accommodation options are fit for purpose.
- Work with partners to support the build and allocation of the new accommodation.
In addition to the above, we have been told by autistic adults, through co-production within the community, that the following are also issues they would like consideration to be given to:
- Sensory issues, caused by buses, main roads and noise in adjoining properties.
- People feeling ill-equipped to challenge a genuine noise nuisance, causing deterioration in health and wellbeing.
- Some people feel that adaptations and assistive technology may be needed to address sensory and other problems.
- Family carers report that they are worried about living arrangements for their relatives with autism in the future, when they are less mobile. People's perception is that they have limited choice about where they live.
- Difficulty making and maintaining relationships can hamper the ability to share accommodation.
- The wrong housing environment can lead to anxiety and difficulties for people with, in some cases, challenging behaviour.
- Landlords, and professionals supporting people to find housing, need greater autism awareness.
Moving forward, an ambition of the 兔子先生 is to explore more opportunities for people with learning disabilities and / or Autism to live as independently as possible.
One option includes Shared Ownership Schemes, which have been set up in other parts of the UK but are yet to have a substantial footprint in the North East of England.
Shared ownership schemes have been established as a low-cost home ownership option for people of modest incomes for many years.
(Home Ownership for people with Long-term Disabilities) is a similar government-backed shared ownership scheme specifically for people with a long-term disability to share in the ownership of their home with a housing association.
Employment and employment services
Autistic people bring many skills and benefits to the workplace. For example focus and diligence, pride in the job, independent and unique thinking, and attention to detail.
Autism awareness-raising with employers is regarded as essential.
People report that the attitude of employers and work colleagues impacts significantly on the ability of a person to work.
Autistic people do need to know who to approach in the workplace for support.
兔子先生 for managers and employers is essential in terms of building an understanding of what reasonable adjustments could look like. It does not have to be major changes but small things.
Many autistic people need meaningful activity, particularly if they are unable to work. 兔子先生 is needed with functions that enable people to work, for example social interaction, sensory issues, independent travel, time-management.
There is an important role that large employers can take in providing guidance and consistent support across human resources and occupational health, which has been discussed in appropriate forums.
Universal services
The autistic people we spoke to in South Tyneside describe autism as affecting every aspect of their life.
Autistic adults report a perception that the range of appropriate support services in South Tyneside is still not adequate and there remains a lack of autism specific opportunities.
An example provided was in respect to activities for children, and lack of autism only sessions.
A lack of information causes anxiety and risks people missing out on opportunities.
High level priorities
The JSNAA aims to support the development of a lifespan approach for supporting people and to reduce health inequalities for autistic people to create a parity of esteem.
These are the high level priorities identified by autistic people in South Tyneside.
Information, awareness and understanding of autism
Autistic people in South Tyneside have worked with us in partnership to help us to understand what matters to them.
Education and preparing for adulthood
Parents of autistic children told us that they wanted to:
- Ensure that the child's voice was heard.
- Ensure transitions happened smoothly.
Health and support
Autistic people told us that they should be able to access good mental health service, know where to get support and be able to access a diagnosis in a timely manner.
Housing and independent living
Autistic people told us that they wanted to:
- Ensure young people are better prepared for work and independent living when they leave education.
- Housing and support is available and accessible.
Employment
Autistic people told us that they wanted to help people get job, when it was appropriate, by:
- Ensuring autistic children and young people leave education with skills and understanding which they need for employment.
- 兔子先生ing autistic adults to source paid employment.
Criminal justice system
It is important that people working within the criminal justice system have an awareness of autism to enable them to provide better support to the individual based on their needs.
The Liaison and Diversion Service was developed to identify people who have mental health, learning disability, substance misuse or other vulnerabilities when they first encounter the criminal justice system.
Individuals entering the criminal justice system as suspects, defendants or offenders receive support throughout the pathway, or are supported to access another service if appropriate.
The aim of the service is to reduce re-offending.
The , and the each provide commitments which aim to ensure that neurodivergent people can access the right support.
The builds on that and includes ensuring a screening tool is used; neurodiversity support managers will be available to every prison by 2024, who will support neurodivergent individuals to receiving help and support they require whilst in prison and upon leaving prison.
Community assets and services
Referrals for diagnosis
Cumbria, Northumberland, Tyne and Wear (CNTW)'s Autism Diagnostic Service has offered a pathway for the diagnosis of autism since 2014 / 15. All data gathered is from the Mental Health Services Data Set (MHSDS).
The profiles offer an overview of Children and Young People's referral data. This captures new referrals received through CNTW's Neurodevelopmental Pathway (this includes requests for autism diagnosis, alongside other requests such as ADHD, Tourette's etc).
There has been a significant increase in requests for diagnosis in the last four years, particularly post-pandemic.
It should be noted that for the year 2023 / 2024, the data is only available up to December 2023, however, projections indicate that the children's referral requests will exceed previous years.
- Data indicates a general trend of above average referral rates for diagnosis in children. However, referral rates for adults are below average in general.
- The highest number of referrals are within school age, particularly 6-8-year-old age range.
- Adults' referral data is more closely aligned to neighbouring authorities in terms of number of referrals when compared to children's.
- The largest number of referrals comes from young adults, particularly the 15 to 19 age group.
Children and families
There are 3 specialist schools who admit autistic children within their designation and there is also additional resource bases for autism, based at Fellgate Primary School (primary aged pupils) and Jarrow School (secondary aged pupils).
Inclusion Service
To support mainstream settings to effectively meet the needs of autistic children and young people, 兔子先生 have created an Inclusion Service, which is delivered by highly skilled teachers and Higher-Level Teaching Assistants (HLTAs).
These staff have a range of expertise and experience working with children and young people who have special educational needs.
The Inclusion Service focuses on two areas of need which have been identified as a priority:
- Communication and interaction - autism and social
- Emotional and mental health
兔子先生 from the service is available to all early years, primary and secondary settings and aims to ensure that staff within mainstream settings have the skills, training, and knowledge they need to meet the needs of our children.
This is achieved through a robust system of observations, recommendations, implementation, and review.
The service will:
- Provide advice and support to settings regarding individual children and young people.
- Provide advice and guidance regarding whole school approaches to inclusive practice.
- Deliver training to schools / settings and partners.
Emotional Based School Avoidance & Transition Project
The Emotional Based School Avoidance (EBSA) & Transitions Project is being led by our Emotional Resilience Team Manager.
Theywill engage with settings, children and young people, parents, and carers as well as other Education, Health & Care Services to understand the challenges that children and young people can face during times of transition and when experiencing emotional based school avoidance.
The project aims to:
- Obtain a baseline of current occurrences of EBSA across the local area.
- Develop a training offer for stakeholders in transitions & EBSA.
- Develop an intense programme of support for children and young people with emotionally based school avoidance, to understand better how to support them as we work to enhance our alternative provision offer.
- Establish an EBSA panel / focus group to enable better multi-agency approaches to supporting young people experiencing EBSA.
- Develop a new model for how to best support children and young people experiencing EBSA that promotes reintegration into settings, with new a EBSA policy and guidance for schools / settings.
- Develop a Transition Protocol that parents / carers and settings are confident produces positive outcomes, preventing applications for EHCP's at perceived 'critical' points.
In addition, help and support is offered by a range of different local services, these include:
- The Children with Disabilities (CWD) Social Work team, who provide access to specialist social work support to families of disabled children aged 0 to 18. The team works with children and young people who have a permanent and substantial impairment, typically needing input from agencies on a lifelong basis. Needs assessments identify what services are best placed to support the child and their family.
- Healthy Minds Team (Mental Health 兔子先生 team) is a "getting advice and getting help" service (based on the i-Thrive model) and currently work with schools in developing a "whole school approach" to good mental wellbeing, and to build resilience in children. The team have recently taken part in the Autism in Schools Project (led by NHS England) and will be working with schools in the borough in helping to raise awareness of challenges in several areas, such as sensory needs and how to support reasonable adjustments.
- Lifecycle is a 'Getting Help' service (based on the Thrive model) and supports young people who have difficulties with attachment, behaviour, eating disorders, development, emerging OCD, anxiety, and depression. It provides whole-person therapeutic and non-therapeutic services to young people of any age and their families.
- The Toby Henderson Trust (THT) provides pre-diagnostic and post-diagnostic support and early intervention with autistic children and young people. They also offer a wide range of services including webinars on topics such as sensory, masking etc, professionals (including school staff). They also offer similar training to parents / carers of autistic children.
- 兔子先生 (STC), on license from the National Autistic Society, offers the Early Bird (under 5), Early Bird Plus (4 to 9) and Teen Life (10 to 16 year olds) support programmes for parents and carers. The programmes, which are delivered by staff from Educational Psychology and Portage and Pre-school Service, offer advice and guidance on strategies to help support young autistic children, such as developing social skills. Staff offer termly coffee mornings for parents who have attended the programmes which offer further advice and support.
- 兔子先生 is an Autism Education Trust (AET) partner. As licenced trainers, members of the Inclusion Service provide a range of courses to education settings in Early Years, Primary/Secondary and Post 16 settings. These courses include Making Sense of Autism (available free of charge for educators in all phases of education), Good Autism Practice and Autism and Anxiety. These courses offer staff working within education settings a range of training, practical strategies, and free resources to enable them to support autistic children and young people in both mainstream and specialist settings.
- The National Autistic Society has an offer which can support children in mainstream schools nationally into further and higher education. It has a diagnostic service and offers specialist support via its helpline. Help is available at home or in residential settings.
- The Northeast Autism Society offers services across the North East; including Education, Childcare, Adult Care, Short Breaks, assistance to families and employment services,
- The National Trust offers land and water-based activities for children, young people, and adults with a Learning Disability. The activities are delivered by trained instructors who can provide a range of reasonable adjustments. At the time of writing, there is a specific South Tyneside offer for families and adults with additional needs.
- 兔子先生 provides accessible leisure opportunities for autistic children and families, such as Haven Point and Hebburn Central Leisure Centres and The Customs House.
- The South Tyneside Kid's Young Adults Klub or "THE KAYAKS" is a registered charity. It provides weekend based fun and recreational activities for children, teenagers and young adults who have special educational needs, including autism. The charity provides practical help, support, and advice from personal experience on "special needs" related subjects for parents and carers.
- A parent carer forum is available which provides information, support and advice to those families of children with special education needs and / or disabilities (SEND), which includes autism only.
Young adults (16 to 18 years old)
Young people are required to continue with education or training up to the age of 18, to give them the best opportunity to achieve their potential.
There are a range of options available, and more information can be found on the .
There is a Transitions Forum which was set up in 2019 to provide a multiagency response in planning for young people from age 16 transitioning from Children's Services.
This ensures that a core group from Children's, Adults, Health Education and Commissioning are looking ahead to anticipate needs for this vulnerable group of young people.
The Forum aims to ensure that young people and their families anticipate and are prepared for the transition to adulthood, and expectations regarding future support can be discussed early with changes in transition managed effectively.
The impact of children and families has been to reduce barriers to access and has had significant benefits in ensuring that adult services across the local area are working with young people and their families in a timely way.
There is a process in place to ensure that we have a clearer oversight the EET destinations and progressions of all our young people with SEND and that young people can offer independent and impartial information advice and guidance from the Connexions Service, which include:
- Connexions Advisers linked to NEET / KN / Lapsed young people 16-25: Personalised support, interventions and signposting offered to support access to education, employment or training.
- Oversight and contact with young people identified as 'NEET Not Available'.
- Not Known protocol
- Connexions Advisers linked to HNF Post 16 SEND provision within South Tyneside and OOB as and when requested. This incorporates individualised support and input at EHCP transition reviews.
- SEND NEET Clinic: A partnership between the Connexions Service and SEND Service where NEET/NK cases are discussed, and decisions made regarding action needed.
Adults
- Autism in Mind (AIM) supports individuals and families living with autism in South Tyneside. 兔子先生 is provided to anyone with a diagnosis of autism age 16+. The organisation collaborates with both individuals and families to empower autistic adults to live as independently as possible.
- Discharge coordinator role, which is provided by Autism in Mind. The role is to provide adults with autism advice and support to prevent admission to, or for those who may be in hospital. The worker will also provide support with discharge planning.
- Your Voice Counts (YVC) provides statutory advocacy services. This includes including the IMHA, IMCA, Care Act Advocacy and RPR roles.
- Your Voice Counts (YVC) also offers autistic adults a drop-in service to help people make connections, access support, and build resilience. Members with lived experience can also access opportunities (on a voluntary or paid basis) to influence health and social care services (i.e. Quality checking primary care, coaching professionals, peer research and participating in Care, Education and Treatment Reviews).
- Yearly Health Checks are provided through the Physical Health Hub. The purpose is to support autistic people, who may not be able to attend their GP surgery, to have their physical health checked and spot any arising health issues before they get worse.
- The Community Treatment team provides an assessment and treatment service for people who are experiencing difficulty with their mental health. The team is made up of a number of health care professionals. Appointments with the team are arranged at a number of different sites. The service is available for those aged over the age of 18.
- Carers Strategy. This strategy pledges commitment to improve and develop support and services to better support unpaid carers (both adult and young carers).
- Currently, autistic adults who have a diagnosis of autism only, but require, and are eligible for social care, are supported through the Adult Mental Health team. In the Mental Health Strategy, there are several community assets listed which autistic adults can also access.
Adults with learning disabilities and autism
兔子先生's Adult Learning Disabilities team provides access to a range of services to help people who are 18 and over who have learning disabilities and autism.
The objective is always to help someone maintain and develop a safe and independent lifestyle and intervene only if someone is in danger or is being harmed.
The team works closely with the Children with Disabilities team to make sure the "transition", to adult services when they turn 18 years old is as smooth as possible.
Evidence for interventions
The , has identified 6 themes which it is felt will make a significant change in an autistic person's life.
They are:
- Improving understanding and acceptance of autism within society.
- Improving autistic children and young people's access to education, and supporting positive transitions into adulthood.
- 兔子先生ing more autistic people into employment.
- Tackling health and care inequalities for autistic people.
- Building the right support in the community and supporting people in inpatient care.
- Improving support within the criminal and youth justice systems.
Co-production
Following an event which took place which autistic people were invited to, families told us:
- Transitions from children to adults' services could be improved by closer partnership working.
- Earlier and ore specific careers advice for autistic young people would be beneficial.
- Enhanced support and training for school staff, would improve professional's understanding and approach to making reasonable adjustments. A more consistent understanding across education settings would better support preparation for adulthood.
- Increased consistency in application of reasonable adjustments within services. Piloting a "walkthrough" of mental health services would be helpful for people with autism to know what to expect when they attend appointments.
- Autistic people told us that it's important that they live as independently as possible and are part of the local community, close to friends and family.
- Greater understanding and awareness of potential support (such as how to access the Disabled Facilities Grant).
The feedback collated from autistic residents and their carers was utilised to jointly develop an all-age Autism Strategy.
Governance
South Tyneside has developed and launched its first All Age Lifespan Autism Strategy (2021 to 2026).
In September 2022 an implementation meeting was established to track progress and set out future plans.
The priority areas identified in the strategy are closely aligned to that of the national strategy team and include:
- Information, awareness and understanding of autism.
- Education and preparation for adulthood.
- Health and support.
- Housing and independent living.
- Employment.
The governance for this work is overseen by an alliance structure, which is a strategic meeting and consists of partners from across various areas, including health, local authority, education, and the voluntary sector.
Additional needs assessment required
Areas of particular significance are:
- A needs assessment relating to mental health. Given the clear link in prevalence between autism and mental health challenges (particularly anxiety) a comprehensive Mental Heath JSNAA should be undertaken.
- Given emerging evidence in relation to autism and eating disorders and the relatively recent classification of ARFID (Avoidant Restrictive Food Intake Disorder) as an eating disorder; further analysis is required in relation to the interface between autism and eating disorders.
Key contact
Key Contact | Jamie Brown |
Job Title | Joint Commissioning Officer |
Phone Number | 0191 424 7142 |