About autism
The Autism Alliance UK brings together not-for-profit organisations that support autistic children, young people and adults, and their families and carers. We want to improve the understanding of autism and autistic people’s experiences across services and society.
Download our information sheet or read below.
How we use language is fundamentally important
Perhaps the most important point of all is that autistic people are just people, with strengths, needs, talents, imperfections and dreams like each of us. People whose experiences and lives are rich and multi-layered and cannot be fitted into boxes.
But across society, many still hold views about autistic people that are negative and reductive, and policy and services often amplify that negative framing, creating an environment which is distrustful, disempowering and sometimes dehumanising.
Language has played a substantial role in this, as the way autism has been described has been primarily through a medical lens, using terms like ‘disorder’, ‘deficit’ and ‘impairment’.
Combined with a lack of knowledge and understanding of autism, a negative and reductive framing has contributed heavily to the unacceptable outcomes autistic people face in health, education, employment and justice, and across communities and society. It can make it less likely that autistic people are accepted and less likely that individuals and families receive the support they need. To see real change, there will need to be a sustained shift in public attitudes.
Autism describes a difference in how the brain works, shaped by genes and the surrounding environment a person experiences. Whatever their level of need, autistic people are not ‘less than’, or ‘broken’, but equals, and part of the diversity of our human population, just as we all are.
Language is fundamentally important because it conditions our view of the world and affects how we act. To see real change, we believe the language we use as a society must evolve, and that this evolution should not be led by politicians or doctors or charities, but by autistic people and their families.
We recognise everyone’s right to choose the language they use. We recognise that our own language sometimes falls short. But we are committed to advocating for and being part of a continuing shift in how we think and talk and write about autism, led by autistic voices.
We believe this can be and should be part of movement towards greater diversity, understanding and humanity in the language we use across all of society. We should seek to understand the lives and experiences of autistic people, neurodivergent people, and ultimately every individual person.
What is autism?
As above, autism describes a difference in how the brain works, shaped by genes and the surrounding environment a person experiences. Some autistic people receive a clinical autism diagnosis, some self-diagnose, and many are undiagnosed.
Every autistic child, young person and adult has individual experiences, and their levels of need can vary greatly, but some of the more common differences that are noted in clinical autism diagnosis[i] include differences in sensitivity to sensory input, different ways of communicating, differences in focus and attention to detail, and differences in perceiving structure and routine.
Clinical autism assessment
Clinical autism assessment is carried out by a specialist, multi-disciplinary team, not by GPs. For an NHS assessment, a referral from a GP or education provider is required, and private assessments are also available.[ii]
A summary of the criteria used to give a clinical autism diagnosis can be found here, but as noted in this linked article and in the section above on language, it is important to be aware that many autistic people challenge this framing as it focuses on deficits.
Key facts
Although most people are now aware of autism, misunderstanding and misinformation are still common, and so the following points may be helpful. References are provided for those who would like to explore the issues in greater depth. Although these references include helpful evidence and analysis, many still highlight the same pressing need for evolution of the language used to think, talk and write about autism.
Autistic children, young people and adults are neurodivergent.
This means autistic people’s brains work in ways that sometimes differ from what is considered typical.[iii] Other types of neurodivergence include ADHD,[iv] dyslexia,[v] dyspraxia, dyscalculia and Tourette’s. Autistic people often experience other different types of neurodivergence. Some autistic people have a learning disability.[vi] Some autistic people use few or no words, and it is especially important that their voices are heard in policy and service design. Autism is not a mental health condition, but autistic people often have mental health conditions such as anxiety and depression,[vii] and physical health conditions.[viii] Autistic people’s experiences may reflect all these factors together.
Autistic children, young people and adults are all different.
There is no single way of being autistic. Autism has been referred to as a ‘spectrum’ from high to low, but this does not reflect the diversity of experience amongst autistic people, and many autistic people, researchers and others prefer to describe a ‘constellation’ of autistic experiences.
Like all people, autistic children, young people and adults have strengths and needs.
Every individual is different, and autistic strengths can include hyperfocus, expertise in topics, creativity and attention to detail.[ix] [x] Some autistic people need very little support, while others might need intensive support.[xi] [xii] Some autistic people and their families face many challenges, and some autistic children, young people and adults engage and participate in their communities, often making significant contributions.
There is no ‘autism epidemic’.
Autism has a strongly genetic basis with research showing a high level of heritability,[xiii] and autistic children, young people and adults represent at least 1%-2% of the population.[xiv] Many claims of ‘environmental causes’ of autism – like vaccines and paracetamol – have been comprehensively refuted.[xv] Autism diagnosis has been increasing steadily for the past two decades[xvi] and this is likely to reflect a range of factors, including changes in clinical diagnostic practice[xvii] and greater awareness of autism across society.[xviii] Despite the long-term increase in autism diagnosis, most autistic adults are undiagnosed,[xix] and amongst females,[xx] older adults[xxi] and some ethnic groups[xxii] autism diagnosis rates are below the currently assumed prevalence rate for society.
Like all people, autistic children, young people and adults experience poorer outcomes when their needs are unmet.
When school, employment, public spaces and society are inclusive, accepting and supportive, many autistic children, young people and adults can thrive. However, in many cases their needs are not recognised or met. This is often because of stigma and a lack of understanding[xxiii] [xxiv] and because policy and services can be developed within a public management culture based on rigid, inflexible models and cut-off thresholds for support.[xxv] These barriers are reinforced by generally weak accountability for addressing the barriers autistic children, young people and adults face.[xxvi] Under current law a clinical autism diagnosis is not required to access support and adaptations.[xxvii] Not meeting autistic children, young people and adults’ needs causes both immediate distress and over time, an accumulation of trauma[xxviii] [xxix] [xxx] that can have devastating consequences for mental and physical health, life expectancy, and life outcomes.
Enabling autistic children, young people and adults to thrive is often about culture and values.
Most action and adaptation that creates inclusive, accepting and supportive environments is low cost and straightforward.[xxxi] Just asking ‘how can I help?’ can have a big impact. A positive culture is also vital in securing the higher levels of support some autistic people and families need. To make a world where autistic people can thrive, our society and services need to embrace human difference from a position of respect, curiosity and empathy, and prioritise identifying, understanding and meeting needs.[xxxii]
How autistic experiences are understood is continuing to evolve.
Historically, understanding autistic children, young people and adult’s experiences has been led by the medical and research professions. This is quite rightly changing, but there is much further to go.[xxxiii] Alongside this, clinical understanding of autism continues to develop,[xxxiv] and research is revealing more about the genetic basis of different autistic experiences.[xxxv] As a result of all these developments, how autistic experiences are understood will continue to evolve.
References
[i] https://www.england.nhs.uk/long-read/a-national-framework-to-deliver-improved-outcomes-in-all-age-autism-assessment-pathways-guidance-for-integrated-care-boards/
[ii] https://www.nhs.uk/conditions/autism/getting-diagnosed/assessments/
[iii] Autism and neurodiversity
[iv] Rong, Ying, Chang-Jiang Yang, Ye Jin, and Yue Wang. 2021. ‘Prevalence of Attention-Deficit/Hyperactivity Disorder in Individuals with Autism Spectrum Disorder: A Meta-Analysis’. Research in Autism Spectrum Disorders 83 (May): 101759. doi.org/10.1016/j.rasd.2021.101759.
[v] Brimo, Katarzyna, Lisa Dinkler, Christopher Gillberg, Paul Lichtenstein, Sebastian Lundström, and Jakob Åsberg Johnels. 2021. ‘The Co-Occurrence of Neurodevelopmental Problems in Dyslexia’. Dyslexia 27 (3): 277–93. doi.org/10.1002/dys.1681.
[vi] Maenner, Matthew J. 2021. ‘Prevalence and Characteristics of Autism Spectrum Disorder Among Children Aged 8 Years — Autism and Developmental Disabilities Monitoring Network, 11 Sites, United States, 2018’. MMWR. Surveillance Summaries 70. doi.org/10.15585/mmwr.ss7011a1
[vii] https://www.england.nhs.uk/long-read/meeting-the-needs-of-autistic-adults-in-mental-health-services/
[viii] Ward, J & Weir, E, Allison, C, Baron-Cohen, S. Increased rates of chronic physical health conditions across all organ systems in autistic adolescents and adults. Molecular Autism (2023).
[ix] Katherine J. Maw, Geoff Beattie, Edwin J. Burns, Cognitive strengths in neurodevelopmental disorders, conditions and differences: A critical review, Neuropsychologia, Volume 197, 2024, 108850, ISSN 0028-3932, https://doi.org/10.1016/j.neuropsychologia.2024.108850. (https://www.sciencedirect.com/science/article/pii/S0028393224000654)
[x] https://www.autistica.org.uk/what-is-autism/autistic-strengths
[xi] Doherty M, Neilson S, O'Sullivan J, Carravallah L, Johnson M, Cullen W, Shaw SCK. Barriers to healthcare and self-reported adverse outcomes for autistic adults: a cross-sectional study. BMJ Open. 2022 Feb 22;12(2):e056904. doi: 10.1136/bmjopen-2021-056904. PMID: 35193921; PMCID: PMC8883251. https://bmjopen.bmj.com/content/12/2/e056904
[xii] https://www.autism.org.uk/what-we-do/news/education-report-2023
[xiii] Sandin S, Lichtenstein P, Kuja-Halkola R, Hultman C, Larsson H, Reichenberg A. The Heritability of Autism Spectrum Disorder. JAMA. 2017 Sep 26;318(12):1182-1184. doi: 10.1001/jama.2017.12141. PMID: 28973605; PMCID: PMC5818813.
[xiv] Autism prevalence, UK, 2020, ONS; also studies by Baird et al., 2006; Tromans et al., 2018; McConkey, 2020; Roman-Urrestarazu et al, 2021, O’Nions et al, 2023
[xv] Sheikh J, Allotey J, Sobhy S, Plana M N, Martinez-Barros H, Naidu H et al. Maternal paracetamol (acetaminophen) use during pregnancy and risk of autism spectrum disorder and attention deficit/hyperactivity disorder in offspring: umbrella review of systematic reviews BMJ 2025; 391 :e088141 doi:10.1136/bmj-2025-088141
[xvi] Russell G, Stapley S, Newlove-Delgado T, Salmon A, White R, Warren F, Pearson A, Ford T. Time trends in autism diagnosis over 20 years: a UK population-based cohort study. J Child Psychol Psychiatry. 2022 Jun;63(6):674-682. doi: 10.1111/jcpp.13505. Epub 2021 Aug 19. PMID: 34414570.
[xvii] https://www.nice.org.uk/guidance/cg142/resources/2021-surveillance-of-autism-nice-guidelines-cg128-cg142-and-cg170-pdf-11846121650629 Also see https://www.psychiatry.org/psychiatrists/practice/dsm
[xviii] https://yougov.co.uk/politics/articles/12053-more-people-uk-are-aware-autism
[xix] O'Nions E, Petersen I, Buckman JEJ, Charlton R, Cooper C, Corbett A, Happé F, Manthorpe J, Richards M, Saunders R, Zanker C, Mandy W, Stott J. Autism in England: assessing underdiagnosis in a population-based cohort study of prospectively collected primary care data. Lancet Reg Health Eur. 2023 Apr 3;29:100626. doi: 10.1016/j.lanepe.2023.100626. PMID: 37090088; PMCID: PMC10114511.
[xx] Aarushi Bhargava, Chris Ashwin, Barriers and facilitators towards an autism diagnosis for females within healthcare: A thematic analysis of interviews with UK healthcare professionals, Research in Autism, Volumes 121–122, 2025, 202547, ISSN 3050-6565, https://doi.org/10.1016/j.reia.2025.202547.
[xxi] O'Nions E, Petersen I, Buckman JEJ, Charlton R, Cooper C, Corbett A, Happé F, Manthorpe J, Richards M, Saunders R, Zanker C, Mandy W, Stott J. Autism in England: assessing underdiagnosis in a population-based cohort study of prospectively collected primary care data. Lancet Reg Health Eur. 2023 Apr 3;29:100626. doi: 10.1016/j.lanepe.2023.100626. PMID: 37090088; PMCID: PMC10114511.
[xxii] Roman-Urrestarazu A, van Kessel R, Allison C, Matthews FE, Brayne C, Baron-Cohen S. Association of Race/Ethnicity and Social Disadvantage With Autism Prevalence in 7 Million School Children in England. JAMA Pediatr. 2021;175(6):e210054. doi:10.1001/jamapediatrics.2021.0054
[xxiii] Autistica (2022). Awareness isn’t enough: understanding is critical to acceptance. autistica.org.uk/news/attitudes-index-news
[xxiv] Cage E, Di Monaco J, Newell V. Experiences of Autism Acceptance and Mental Health in Autistic Adults. J Autism Dev Disord. 2018 Feb;48(2):473-484. doi: 10.1007/s10803-017-3342-7. PMID: 29071566; PMCID: PMC5807490.
[xxv] See, for example: Connolly SE, Constable HL, Mullally SL. School distress and the school attendance crisis: a story dominated by neurodivergence and unmet need. Front Psychiatry. 2023 Sep 22;14:1237052. doi: 10.3389/fpsyt.2023.1237052. PMID: 37810599; PMCID: PMC10556686.
[xxvi] For more on accountability and culture, see: https://www.autism-alliance.org.uk/doing-the-right-thing
[xxvii] https://www.ipsea.org.uk/blog/the-myth-of-needing-a-diagnosis-before-you-can-get-support
[xxviii] See: https://theautisticadvocate.com/autistic-masking/; Five ways staff can humanise mental health care for autistic people | BPS
[xxix] Connolly SE, Constable HL, Mullally SL. School distress and the school attendance crisis: a story dominated by neurodivergence and unmet need. Front Psychiatry. 2023 Sep 22;14:1237052. doi: 10.3389/fpsyt.2023.1237052. PMID: 37810599; PMCID: PMC10556686; Hassan Mansour, Suman Kurana, Aphrodite Eshetu, Sarah Hoare, Celine El Baou, Isabelle Arnold, Clemence Halys, Gavin R. Stewart, Roopal Desai, Amber John, Will Mandy, Elizabeth O’Nions, Joshua Stott, Prevalence of Post-Traumatic Stress Disorder (PTSD) in autistic children or young people (CYP) and adults: A systematic review and meta-analysis, Clinical Psychology Review, Volume 120, 2025, 102621, ISSN 0272-7358, https://doi.org/10.1016/j.cpr.2025.102621.
[xxx] Pryke-Hobbes A, Davies J, Heasman B, Livesey A, Walker A, Pellicano E, et al. (2023) The workplace masking experiences of autistic, non-autistic neurodivergent and neurotypical adults in the UK. PLoS ONE 18(9): e0290001. https://doi.org/10.1371/journal.pone.0290001
[xxxi] See https://www.acas.org.uk/reasonable-adjustments/adjustments-for-neurodiversity; https://autisticgirlsnetwork.org/reasonable-adjustments-possible-at-school/
[xxxii] Introducing Autism - Autism Understood
[xxxiii] Murray D, Milton D, Green J, Bervoets J. The Human Spectrum: A Phenomenological Enquiry within Neurodiversity. Psychopathology. 2023;56(3):220-230. doi: 10.1159/000526213. Epub 2022 Sep 30. PMID: 36183692.
[xxxiv] Green J (2022) Autism as emergent and transactional. Front. Psychiatry 13:988755. doi: 10.3389/fpsyt.2022.988755
[xxxv] Litman, A., Sauerwald, N., Green Snyder, L. et al. Decomposition of phenotypic heterogeneity in autism reveals underlying genetic programs. Nat Genet 57, 1611–1619 (2025). https://doi.org/10.1038/s41588-025-02224-z