Autistic Spectrum Disorders

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What is Autism?

Autism is defined as a lifelong condition that affects how a person communicates with, and relates to, other people. It can be combined with restricted interests and rigid and repetitive behaviours. Autism is a spectrum condition meaning the condition affects people in different ways. Living with autism can substantially affect a person’s quality of life and that of their families or carers.

As the National Autistic Society website states: "Some people live with autism for their entire life without ever getting a formal diagnosis. Often this is simply because autism wasn't widely known or understood when they were growing up. For adults, a diagnosis of autism can help to explain why they have always found certain things difficult. For children, it can mean that the right support is put in place from an early age."

Figures from NHS digital suggest that for the year 2019-20 there were 782 people identified in Somerset with autism.

The prevalence of the condition is 29 times greater amongst those with learning difficulties.  Changes in data collection mean that detailed information from records within Somerset is no longer available; older figures from 2015 are described below as context despite their age.

Executive summary of data from 2015:

• Nationally, it is estimated that around 1% of the population may have an autistic spectrum condition. The population of Somerset is 560,000 so, if the county is typical of the UK as a whole, around 5,600 people in Somerset may have such a condition.
• 2,096 people registered at a Somerset GP Practice were recorded with Autism (at December 2014). This suggests that around three in five of those with autism are undiagnosed, especially amongst older age groups.
• In 2020, 861 children with autism were known to Somerset schools.  The equivalent figure in 2015 was 496.
• In Somerset, more than 3 in 5 of those identified as having ASD were aged under 25.
• Nationally and locally, around four times more men than women have diagnosed autism, although this may be due to under recognition in women.
• Around 50% of people with autism nationally have a learning disability.
• An estimated 70% of individuals with autism also meet diagnostic criteria for at least one other (often unrecognised) mental and behavioural disorder, and 40% meet diagnostic criteria for at least 2 disorders, mainly anxiety, attention deficit hyperactivity disorder (ADHD) and oppositional defiant disorder (ODD).
• The National Autistic Society estimated that for someone with high-functioning autism, or Aspergers Syndrome, the lifetime cost is £3.1m and for someone with autism and a learning disability, the cost was 50% higher at £4.6m. These figures include the "hidden" costs of family carers and voluntary services.  Other estimates, from 2014, put the direct lifetime costs as £0.92m for a sole diagnosis of autistic spectrum condition, and £1.4m for autistic spectrum with intellectual disability.
• Nationally, only 15% of people with autism are in full-time employment, and 9% in part-time work. More than 1 in 4 graduates with autism are unemployed, twice the average proportion (Association of Graduate Careers Advisory Services).
• In 2014 there was a suggestion that the rates of diagnosed Autism Spectrum Disorder (ASD) in Somerset increase as deprivation decreases.

 Somerset Autism Strategy 2015-2018

In December 2015, the multi-agency Somerset Autism Strategy Group produced a new Somerset Autism Strategy for 2015-2018. This has been informed by extensive consultation involving people with autism, their carers and families, and professionals. It sets out a number of strategic priorities and an Action Plan for delivering those priorities.

The strategy can be downloaded below:- 

• Somerset Autism Strategy 2015-2018
  Document includes supporting data and policies, strategic priorities and recommendations for action in Somerset

Level of Need in Somerset:-

• At the end of 2014, 2,096 people registered at a Somerset GP Practice were recorded with Autism. 
• This represents an increase of 26% since the end of 2012, which could reflect more intensive efforts to identify and record the condition.
• The ratio of men to women diagnosed is almost exactly 4 to 1, in line with the national estimate.
• Almost two in five (38%) of people diagnosed at Somerset GP practices are in the 15-24 age group (see Figure 1).
• The highest rate per population is 14 per 1,000, in the 15-19 age group (see Figure 2)
• The most commonly diagnosed autistic spectrum disorder in Somerset is Asperger's Syndrome, with 42% of the total (see Figure 3)
• There is variation in recorded prevalence across the county.  In 2014 the areas of high concentration are Central Mendip and South Somerset Healthcare (see Figure 4). 
• In 2014 there is a suggestion that the rates of diagnosed Autism Spectrum Disorder (ASD) in Somerset increase as deprivation decreases (see Figure 5). These higher than expected observations could be because the proportion of people with ASD who are diagnosed is different in different areas (which might be related to the socioeconomic conditions of the areas) as well as the possibility of a true difference in the proportion of people with ASD.
• In 2013, 367 children and young people in Somerset were recorded as High Needs (School Action Plus) or a Statement with autism as the primary need (see Figure 6). 26% of them had a secondary need.

 Figure 1 Numbers diagnosed with Autistic Spectrum Conditions in Somerset: Age by Sex, December 2014 (source: MIQUEST)

Figure 2 Numbers recorded with Autism spectrum conditions at GP practices per 1,000 population registered at practices, by Age, December 2014 (source: MIQUEST)

Figure 3 Types of Autistic Spectrum Disorders in Somerset: Numbers and % total, December 2014 (source: MIQUEST)

Figure 4 Comparison of Observed and Expected number of people recorded with Autism in GP practices – by commissioning locality within Somerset, December 2014 (source: MIQUEST)

Red denotes significantly higher number of diagnosed cases than expected.

Green denotes significantly fewer number of diagnosed cases than expected

The bulk of the increase in the number of people diagnosed with ASD since 2012 came from the South Somerset Healthcare and Bridgwater Bay Commissioning Localities (formerly known as GP Federations)

Figure 5 Comparison of Observed and Expected number of people recorded with Autism spectrum conditions in GP practices – by deprivation quintile of practices, December 2014 (source: MIQUEST)

The Somerset average is defined as 100%. The least deprived and the middle deprived quintiles have significantly more people recorded with Autism than expected and the most deprived quintile has significantly fewer people recorded with Autism than expected. This represents a change from 2012 when there was no evidence of a relationship between deprivation and diagnosed autism.

 Figure 6 Numbers of statements or School Action Plus (SA+) for which ASD is the primary need

Source: School Census January 2021

Future Needs in Somerset

Note that, while the number of people identified with Autism has risen in the past two years, this may not be the result of an actual increase in the number of people with ASD. Therefore it is not possible to predict changes in the future. However, in Somerset we need to improve the collection of information and data about autism, across the age spectrum, with a range of agencies, people with autism and carers. This will be used to inform future planning and change.

Vision for Somerset

Somerset aims to significantly improve knowledge and understanding of autism amongst the general public, statutory services, the voluntary sector and community based groups. We aim to improve the way we all work together utilising the resources that are available to meet needs and improve outcomes for people with autism and their families/carers and give the information and support they need to remain as independent as possible.

Strategic Priorities and Monitoring the Strategy

In order to take the new Strategy forward a new Autism Strategy Group has been recently established.

The new group will be responsible for ensuring that the key priorities identified in the Strategy are implemented through the Action Plan (see Appendix 4 in the document). This plan will be a working document and updated regularly to reflect progress and local developments. We will establish a communications plan to ensure we inform key stakeholders and the general public on the progress of the implementation of the Strategy.

This Strategy Group will report to the Joint Commissioning Board and the Somerset Children’s Trust.

There will be four subgroups created that will take forward the actions. The subgroups will be:

• Living with Autism
• Workforce Development
• Identification and Diagnosis
• Children and Young People

A range of information and support services already exist in Somerset. These are detailed, with links, in the Strategy document.

The Action Plan harnesses resources from these different organisations. Specific priorities within each of the above subgroups will be led by appropriate organisations such as Somerset County Council, Somerset Clinical Commissioning Group, Somerset Partnership, District Councils, etc. 

A selection of websites containing further information and/or advice are listed below:-

• Somerset County Council
• The Somerset Partnership NHS Foundation Trust
• Child and Adolescent Mental Health Service (CAMHS)
• Somerset Parent and Carer Forum (SPCF)
• Somerset SENDIAS (Special Educational Needs and Disability Information, Advice and Support)
• Caring4ourkids.com
• Somerset Protocol for Autistic Spectrum Conditions assessment and diagnosis
• NICE Clinical Guidelines Autism Quality Standards (January 2014)
• NICE Clinical Guidelines Management of autism in children and young people (August 2013)