Wiltshire Autism Strategy 2022 to 2027

Recent UK research suggest that the diagnosis of autism in children is around 1.76%¹⁰ - an increase from 1.57% in a previous study carried out by the same research team using similar methods. This study suggested that there are variations in autism prevalence across different ethnic groups, with prevalence highest in pupils of black ethnicity (2.1%) and lowest in Roma/Irish Travellers (0.85%). Pupils with a record of autism in schools were 60% more likely to also be socially disadvantaged, and 36% less likely to speak English.

In the UK, around 1.1% of adults is estimated to be autistic. The male-to-female ratio is between 5:1 and 3:1, although it is widely believed that this under-represents the number and proportion of autistic girls and women. There is some evidence to show a link between gender dysphoria and autism, although more research is needed on this subject¹¹. Autism is under-diagnosed in adults of working age (and in older adults in particular), which may be due to autism not having been widely recognised or diagnosable when people who are currently adults were children. Many of these adults are living without support or information, but anecdotally we hear of people who find it challenging when support systems fall away (for example, when a young person leaves school or college).

A study by the London School of Economics and Political Science¹² in 2014 estimated that autism is the most costly medical condition in the UK, costing the country at least £32 billion per year in treatment, lost earnings, care and support for children and adults with autism.

Applied to Wiltshire's population¹³, this indicates that around 5,600 people were potentially living with autism spectrum conditions in Wiltshire in mid-2020, and approximately 1,200 of those will be children or young people. The table below shows how the overall population and the number of autistic people is likely to change in the next 15 years:

Estimated population of autistic people calculated at 1.1% of resident population, by male and female

The next tables show in more detail how many male and female autistic people there are likely to be in Wiltshire across different age groups:

It is estimated that 40% of autistic people (i.e., around 2,500 people in Wiltshire) will also have an anxiety disorder, and one third (around 2,100 in Wiltshire) will also have a learning disability.

Health professionals will usually not give a diagnosis of autism spectrum condition to a child under two years old, and the average age of a childhood autism diagnosis in the UK is around four-and-a-half years old. Waiting times and numbers of young people waiting for assessment of autism spectrum condition (ASC) are a national problem, and in Wiltshire demand is increasing and waits are often excessive.

In Wiltshire, there are around 8,500 children and young people with SEN Support needs and a further 4,300 with an Education, Health and Care Plan. Wiltshire's SEND Inclusion Strategy identified that communication and interaction was the most common SEND designation for children in primary school. In line with national trends, there has been an increase in the number of children and young people with autism as their primary need; in 2021, there were around 1,100 CYP in Wiltshire with a primary need of autism, split as follows by Key Stage:

In 2021, Wiltshire Council supported approximately 500 adults with a diagnosed autism spectrum condition, most of whom also have a learning disability and/or mental health needs. The number of autistic social care customers has increased significantly in the last five years. The Wiltshire Independent Living Strategy 2022/27 commits to improving the quality and choice of housing, care and support to these people; in particular, we know that the needs of autistic people who don't have a learning disability are often not well met.

A needs analysis carried out in 2018 showed that nearly two thirds of commissioned social care and housing providers reported limited ability to support autistic customers and that autistic customers often don't have a smooth transition between children's and adults' services.

Wiltshire Clinical Commissioning Group (CCG) Autism Spectrum Disorder Workshop - March 2020

In December 2019, the Bath and North East Somerset, Swindon and Wiltshire, Learning Disability and Autism (BSW LDA) Programme board to map out services and pathways in each locality, focusing on what works well, as well as gaps and issues. The scope included the whole life pathway, i.e., both children and adults, as well as transition. Themes emerging from these discussions included:

• people having nowhere to go following diagnosis,
• maze-like pathways of accessing an assessment and diagnosis,
• many cinemas, theatres and shops have improved the environment for autistic people, and we can learn from them,
• the adoption of yellow cards / sunflowers to indicate safer places,
• the need for better support for autistic people,
• issues with people getting a diagnosis privately and then not being able to access public services,
• the need to share stories to share information and good practice.

When asked to think of suggestions as to how the experience of autistic people could be improved, the most popular suggestions were:

• improvement in transitions from children's to adults' services
• better understanding of autism within "generic" services
• sensory needs
• pre-assessment of support around expectations and how to manage them
• support for behaviour that may challenge some people

¹⁰ Autism rates increase (ncl.ac.uk) (opens new window)

¹¹ Autism in adults: How common is it? (cks.nice.org.uk) (opens new window)

¹² Buescher A. V., Cidav Z., Knapp M., Mandell D. S. (2014), "Costs of autism spectrum disorders in the United Kingdom and United States of America". In Journal of the American Medical Association Pediatrics |(JAMA) 168(8) pp721-728. Available at: Costs of Autism Spectrum Disorders in the United Kingdom and the United States (jamanetwork.com) (opens new window)

¹³ Autism resources: Commissioning services for autistic people, PDF 290KB (skillsforcare.org.uk) (opens new window)