Home > People and Places > People > Autistic People

Autistic People

Last Modified 27/03/2023 14:32:11 Share this page

Introduction

Autism is a Neurodevelopmental condition which is often included in discussions of “Neurodiversity” along with other conditions such as ADHD, Dyspraxia, Tourette’s and others. Autism is a distinct “Neurotype” and Autistic people will experience issues unique to them.

Autistic people experience patterns of thought, cognitive processing, social issues and behaviour which can include but are not limited to the following factors:

  • Difficulties with social skills/understanding social norms and cues
  • Fixed patterns of behaviour and “routines”
  • Sensory needs/sensitivities
  • Repetitive behaviours known as “stimming” which can serve a variety of purposes
  • Fixed patterns of “straight-line” or “bland white” thinking perhaps best characterised by having concrete schemas into which the world around them must fit
  • Issues around creativity/problem solving/executive function

These features can produce both disabilities and advantages in the context of a world which is designed with people who are not autistic in mind.

As the UK National Autistic Society identifies, the definition of autism is an evolving one:

“The definition of autism has changed over the decades and could change in future years as we understand more. Some people feel the spectrum is too broad, arguing an autistic person with 24/7 support needs cannot be compared with a person who finds supermarket lights too bright. We often find that autistic people and their families with different support needs share many of the same challenges, whether that’s getting enough support from mental health, education and social care services or being misunderstood by people close to them.”1

The estimated prevalence of Autistic adults in the UK is 1.1%, or about one in 100 people2. Some studies estimate that rates among children could be as high as 1.76% (one in 57), and possibly higher taking into consideration the potential under-estimation of those meeting diagnostic criteria3.

Social and Medical / Diagnostic Models of Autism

Over the past 40 years Autistic people have been central to the emergence of different ways of viewing neurological variations and those who have them. The term neurodiversity emerged in the 1990’s in recognition that brain function is diverse, and autism and other ‘neurodivergence’ (e.g. ADHD) are part of a wide-ranging spectrum of neurocognitive functioning. The neurodiversity movement challenges the definition of autism and other neurological ‘conditions’ that are based on a medical / diagnostic model that assumes a ‘normal’ or health brain (from a neurotypical, or NT, perspective). Instead of being a condition or problem to be treated and a justification for stigmatisation and prejudice, neurodiversity is something that should be understood as part of overall human diversity and a source of creativity and social benefit4,5.

Whilst language around, and responses to, autism and Autistic people are changing, most autism statistics relate to clinical diagnoses of autism. The World Health Organisation’s diagnostic categorisation system ICD-11 defines autism as a lifelong disorder that has a great impact on the individual and their family or carers. ‘Autism Spectrum Disorders’ (ASD) are diagnosed in children, young people, and adults if these behaviours meet criteria defined in DSM-5 and ICD-11 diagnostic systems and have a significant impact on function. Clinical diagnosis tends to be defined by behavioural differences and difficulties with reciprocal social interaction and social communication, combined with restricted interests and rigid and repetitive behaviours6,7.

Autism statistics may not present a full picture of the number and needs of Autistic people for a number of reasons, such as:

  • Individuals, families or friends may be unaware of autism, or may not see it as being related to them
  • Statistics only include those with official diagnoses, and not a wider body of people who may or may not self-identify as part of the Autistic community
  • Some people may not be willing or able to talk about concerns or seek a diagnosis (and some may be resistant to diagnostic models)
  • Professionals or others supporting the person may not pick up on concerns or know how to broach the subject (for example, in relation to women, where there is a recognised gender diagnosis gap)8
  • There is wide variation in rates of identification and referral for assessment, waiting times for diagnosis, models of multi-professional working, assessment criteria and diagnostic practice6

Whilst ‘treatment’ for autism is neither possible nor, for many, appropriate, autistic people and their families may benefit from treatment for co-occurring conditions (such as anxiety or depression) and from information, advice, support and advocacy around areas such as self-care, mental well-being, independence, employment and training, and navigating services. With such diversity, it is important to ensure provision meets a wide range of needs. Services should also engage Autistic people, both individually and collectively, in responding to their needs appropriately and improving the accessibility of provision to neurodiverse people in general.

Facts and Figures

The populations of adults predicted to be diagnosed with autism (an "autisitic spectrum disorder") in future years are shown in Figures 1 and 2. Whilst there is some variation across age groups, the number of people with a diagnosis of autism is expected to grow slightly over the coming decade, with a larger predicted increase between 2030 and 2040. This is almost entirely due to an increase in males with autism, particularly those aged 65 and over. As these tables highlight, autism diagnoses are considerably more common among males than females.

Autism in Adults

Figure 1 - People predicted to have diagnosed autism in Blackpool, males by age

Age 20202025203020352040
18-24 95 90 99 104 97
25-34 158 155 146 148 158
35-44 135 142 149 146 139
45-54 173 148 142 153 158
55-64 178 184 169 149 146
65-74 135 137 157 166 155
75 and over 103 119 126 137 157
Total males 978 974 989 1002 1009
Source: PANSI/POPPI

Figure 2 - People predicted to have diagnosed autism in Blackpool, females by age

 20202025203020352040
18-24 10 10 11 11 11
25-34 17 16 15 15 17
35-44 15 16 16 16 15
45-54 19 17 16 17 17
55-64 19 17 16 17 17
65-74 15 15 17 19 18
75 and over 15 17 17 18 20
Total females 112 111 111 113 114
Source: PANSI/POPPI

Emerson and Baines (2010)9 estimate that between 20% and 33% of adults with learning disabilities are also autistic. Whilst prevalence estimates need to be treated with caution since both learning disability and autism involve 'hidden' or undiagnosed populations, this estimated range would indicate that, in 2020, between 515 and 849 adults in Blackpool had both a learning disability and autism.

Autism in Children

Emerson and Baines (2010)9 estimate that, in the UK, between 1% and 1.5% of children have an 'autistic spectrum disorder'. Applying these proportions to the mid-2020 under-18 population of Blackpool suggests a lower estimate of 291 and an upper estimate of 437 children with autism in Blackpool.

Whilst caution is again needed with accurate prediction, Emerson and Baines (2010)1 estimate that between 40% and 67% of Autistic children also have a learning disability. This would give a range of between 116 and 292 under-18s living in Blackpool who are both autistic and have a learning disability.

School census data shows that, in 2021, 287 children with diagnosed autism were known to state-funded schools in Blackpool. 73 of these were in primary schools, 49 in secondary, and 165 in special schools. 219 were on Education, Health and Care Plans (EHCPs) and 68 were in receipt of Special Educational Needs (SEN) support. This is an increase from 203 in 2017 and 220 in 2019, though the overall rate of children with autism diagnoses known to schools in Blackpool remains lower than both North-West and national rates (Figure 3).

Figure 3: Autistic Children known to Schools: Blackpool, North-West and England, 2015-2021

2022 Children with autism
Source: OHID, Learning Disability Profiles / Department for Education, Special Educational Needs in England 2020/21.

National and local strategies

    • The National Strategy For Autistic Children, Young People and Adults: 2021 to 2026 sets out a five-year vision to improve the lives of autistic people, their families and carers, building on the previous strategy and responding to increases in diagnosis and in the reported impact of Covid-19. The strategy sets out six themes:
      • improving understanding and acceptance of autism in society
      • improving Autistic children's and young people's access to education, and supporting positive transitions into adulthood
      • supporting more autistic people into employment
      • tackling health and care inequalities for autistic people
      • building the right support in the community and supporting people in in-patient care
      • improving support within the criminal and youth justice systems

The strategy highlights the importance of collaborative working across national and local government, the NHS, the education system, the criminal and youth justice systems, and with autistic people and their families.

Locally, the NHS Primary Mental Health Autism Team works alongside Blackpool Council Adult Social Care Autism Team to provide services to Autistic Adults in Blackpool. The NHS Primary Mental Health Autism Team undertakes diagnostic assessments for autism and mental health and offers post-diagnostic health support and interventions. The Adult Social Care Autism Team, established in 2019, assess the social care support needs of Autistic people (with or without a clinical diagnosis) and offer flexible care plans tailored to the individual. A joint pathway between the two services is currently under development.

The National Autistic Society also facilitates an Adult Support Group for those aged 16+ from the Blackpool area.


[1] National Autistic Society. What is Autism. https://www.autism.org.uk/advice-and-guidance/what-is-autism

[2] National Institute for Health and Care Excellence (2020) Autism in adults: How common is it? https://cks.nice.org.uk/topics/autism-in-adults/background-information/prevalence/

[3] Roman-Urrestarazu, R., van Kessel, R., Allison, C., Matthews, F.E., Brayne, C. & Baron-Cohen, S. (2021) Association of Race/Ethnicity and Social Disadvantage With Autism Prevalence in 7 Million School Children in England. JAMA Pediatrics, 29 March 2021. doi:10.1001/jamapediatrics.2021.0054

[4] Singer, J. (2017) Neurodiversity: The Birth of an Idea. Judy Singer.

[5] Also see: Walker, N. / Autistic UK. The Neurodiversity Paradigm. https://autisticuk.org/neurodiversity/

[6] National Institute for Health and Care Excellence (2021) Autism spectrum disorders in adults: diagnosis and management. Update 14 June 2021. https://www.nice.org.uk/guidance/cg142

[7] National Institute for Health and Care Excellence (2017) Autism spectrum disorder in under 19s: recognition, referral and diagnosis. Updated 20th December 2017 https://www.nice.org.uk/guidance/cg128

[8] see National Autistic Society ‘Diagnosis’ webpages. https://www.autism.org.uk/advice-and-guidance/topics/diagnosis

[9] Emerson, E. & Baines, S. (2010) The Estimated Prevalence of Autism among Adults with Learning Disabilities in England. Improving Health and Lives: Learning Disabilities Observatory