Why we need to understand
With public awareness of autism at an all-time high of 99% then surely, as the saying goes, our work here is done? Yet autistic people still face some of the greatest inequalities of any group in society.
In this article we explore how public awareness is just one step on a journey that has been underway for decades; and how the next stage could bring much-needed benefits for everyone in society.
The Autism Alliance’s vision is a world where autistic people can thrive and live their lives in their communities. For this to happen, many things need to change.
You would think that, with public awareness of autism riding high at over 99%, this would be straightforward. Yet, in contrast, 91% of autistic people feel that society does not accept or only sometimes accepts them.
Awareness is not translating into change.
In Doing The Right Thing[i], we highlighted how stigma and discrimination have persisted for autistic people, despite the increases in autism awareness. The effect of stigma is damaging for a wide range of groups, but for autistic people it is acute, and one of the biggest contributors to the unacceptably poor outcomes they face.
Almost 80% of autistic people will experience poor mental health in their lives, the highest of any group.[ii]
Only 26% of autistic children are happy at school, and autistic children are 28 times more likely to consider or attempt suicide than non-autistic children.[iii]
77% of autistic adults reach crisis before community support is provided, often leading to family breakdown and confinement in mental health hospitals, where the average stay is 5 years. While there has been some progress in reducing the number of people with a learning disability detained, the number of autistic adults in locked inpatient settings has increased by 114% since 2015.[iv]
There continue to be appalling cases of abuse of autistic people in care, almost 15 years after the scandal at Winterbourne View hospital was exposed by BBC Panorama.[v] The most recent case was brought to light only 4 months ago, at Life Wirral in Wallasey.[vi]
Only 3 in 10 autistic adults are in paid employment, one of the lowest employment rates of all disability groups [xxix].
Whether it is the actions of Government Ministers and MPs, local commissioners, public service professionals, or the wider public, how we act ‘in the moment’ is incredibly important – and discrimination, whether conscious or unconscious, has a huge impact on autistic people’s lives. This is not only about the practical impact of funding decisions, but also about the cumulative impact of continuously hearing and perceiving stigma, whether in language or in the negative behaviour of others.
Being treated well by others, and by the system that provides services and support, can make the difference between living a happy and fulfilled life, and the escalation of distress into mental health crisis and beyond. For autistic people, both emotional and sensory dysregulation are real, and the consequences of deterioration can be severe, for themselves and for their families.
Whether an autistic person is able to live an autonomous life, or whether they need round the clock intensive support, needless stigma and discrimination can hold back improvements in their situation - often impacting on their families too.
Put simply, discrimination costs lives.
Nearly a century of (mis)understanding autism
Autistic people have faced stigma since autism was first identified over 80 years ago, at which point it was considered a ‘psychotic disorder’ of childhood largely attributed to the effects of the ‘refrigerator mother’. This was during a period of particularly negative thinking in psychiatric practice, and led to ‘treatments’ which at their worst were barbaric. Thankfully, both clinical and societal understanding have moved on since then. But despite greatly increased understanding of autism in research, rises in autism awareness, and greater representation of autistic people in the media, the public stigma around autism hasn’t gone away.
Autistic people are still portrayed as outsiders who don’t fit in. Autism is still framed in terms of ‘deficits’ and ‘weaknesses’. Medical words like ‘disorder’, and descriptions of people ‘suffering from autism’, carry negative connotations, suggesting that autism is wrong rather than part of human diversity. Across the wider population, experience of autism tends only to be at the points where distress breaks through, again reinforcing negative associations and causing them to back away.
Stigma has persisted through a combination of cultural stereotyping, a medical model of language, and limited experience of autism across society.
The result is that while professional understanding of autism is increasing, public understanding of autism remains very low. Although 99.5% of people are now aware of autism[vii], over a third of people in the UK still believe autism is a learning disability, and 30% are unsure if autism can be cured[viii].
This lack of understanding allows negative impressions of autism to persist – when we don’t understand something, we will overlay our own explanations, which sometimes come from instinct and sometimes from stereotype, including the still-common ‘Rain Man’ portrayals in the media. It becomes very difficult to break out of the stigma, and harder to achieve acceptance.
The impact on autistic people
The impact of all this is sobering: according to a recent survey, 91% of autistic people feel that society does not accept or only sometimes accepts them [ix].
It’s important to acknowledge that autistic people can face intense levels of distress every day of their lives; that their responses to this distress can alarm other people, and sometimes present a risk of harm; and that the effort involved in ‘trying to fit in’ (or ‘masking’ as it is often known) has damaging effects on autistic people’s wellbeing. Autistic people may have a learning disability, and co-occurring conditions like epilepsy and dyspraxia. Life for many autistic people, and their families, can be relentlessly challenging.
But this isn’t the whole story. Autism doesn’t stop you having a personality: on the contrary, autistic people’s personalities are as rich and varied as they are amongst all people. Neither does it stop you having strengths – and autistic people’s strengths can be considerable as well as surprising[x], whether as part of an autonomous life, a life requiring continual support or anything in-between. There are many instances of joy in autistic people’s lives, including those they get from their individual interests – and the connection between autistic people and their families can be deep and committed even at times of greatest strain.
The situation today: are there more autistic people and does it matter?
In the past twenty years there has been an exponential rise in the diagnosis of autism in the UK, a consequence of increased awareness and changes in diagnostic criteria. We have seen parallel increases in the diagnosis of other types of neurodivergence. Recent academic studies suggest that we are moving towards the real prevalence of autism in the population[xi], which could be between 2% and 3%. This is higher than estimates from two decades ago, but still a very small proportion of the population overall.
Despite this, increases in diagnosis – and greater awareness of mental health – have been repeatedly seized on by politicians and commentators as some sort of crisis. There are two broad narratives: that neurodivergence is a social construct rather than a physical and mental reality, and that many diagnoses should therefore be ignored; and that society has moved to ‘a narrative built on fragility and medicalisation’, and that our focus on ‘psychological and mental health’ has gone too far, creating needs that organisations and the state were never meant to meet[xii].
Whether it’s genuinely what these authors believe, or a cynical hijacking of autism for political ends, it reflects a basic misunderstanding.
Autism has almost certainly always existed as a natural variation in the human population. In their reference book on psychological theory and current debate in autism, Professor Francesca Happé and Professor Sue Fletcher-Watson share two folk stories from different cultures in different parts of the world, in which characters likely to be autistic are described. With research into biomarkers of autism continuing, they also note that ‘the present consensus is that in the majority of cases autism is the result of the action of hundreds of common genetic variants, each of very small effect’[xiii]. The clinical diagnosis of autism gathers information about experiences, strengths, challenges and needs, but there is no doubt that autism has a strong genetic component.
In other words, the sustained increases in autism diagnosis – and of other types of neurodivergence – we have seen in recent years have followed the progress of science. As we have learnt more, we have become better able to identify and diagnose, which means we have seen movement towards the true prevalence of autism as a feature of human diversity[xiv]. This has also enabled those who don’t want or need a formal diagnosis to understand themselves better. It’s not a political movement, or anything to do with ‘the rise of the bureaucratic class’ – it’s an entirely natural process of society learning more about itself, and changing as a result. We have seen plenty of these shifts in human history.
As we learn more about human diversity, it follows that we should learn how to meet the needs of emerging groups. Autistic people have significant needs, and the consequences of not meeting these needs are severe: damage to mental health, lower life expectancy, low employment prospects, family breakdown, and confinement in mental health hospitals. As well as preventing these unacceptable outcomes, meeting needs can enable autistic people to develop an authentic voice, gain autonomy, and explore and realise their potential. But as long as stigma and discrimination persist, it will be hard to make progress, and so increasing understanding of autism is critical.
Amongst some commentators, there are concerns that, once we recognise the countless possible differences in the human mind and link them to better or poorer outcomes, everybody will ask for every need to be identified and met, no matter how small. People will pass off their wants as needs. It’ll be a free-for-all.
There are four responses to this question.
1. If you meet someone’s needs, you are much more likely to get better outcomes
The first reason is a basic truth about how human life works[xv], and holds whether the needs in question are physical needs for warmth, food and shelter, or mental needs for understanding, encouragement and validation. The link between wellbeing, productivity and life expectancy is irrefutable.[xvi]
2. We will naturally learn what is a ‘reasonable’ meeting of needs
The second is that wants and needs are very different[xvii], and that we should trust people enough to know that in a well-informed and supportive environment people will find the natural boundaries within which they can thrive. As knowledge about neurodivergence continues to increase, and public debate on neurodivergence and mental health becomes even safer, the ‘reasonableness test’ will find its own level.
3. The law is on our side - and for good reason
The third is that equality of opportunity is protected in law, and this requires adaptation, just as we would adapt in any relationship to get the most for both parties involved. There are countless examples of neurodivergent people whose required adaptations were entirely reasonable, but were refused or ignored, and whose potential therefore remained unfulfilled. This is one of the main reasons the UK employment rate for autistic people remains at just 29%[xviii], despite their strengths and abilities.
4. There is so much more to be gained than lost
The fourth point, is that being better able to recognise and meet needs isn’t a threat – on the contrary, it’s something to be celebrated, because it opens up opportunity. This may be the opportunity for a life lived with greater happiness; equally, it may be the opportunity for a significant input to our society and economy[xix]: imagine how different our world would be without the contribution of autistic minds through the years, in technology, science and the arts and humanities.
When we meet needs, we not only help individuals, but create a world in which more people can thrive and give themselves the opportunity to contribute socially and economically[xx]. The benefits of meeting needs are likely to greatly outweigh the costs[xxi]. Fundamentally, we need to recognise that every single individual – even those in power – both gives to society and needs something back from society: and that it is because of our diversity, and not in spite of it, that a functioning and balanced society exists.
In public policy, meeting needs is not a false economy, but the heart of the matter.
What we are learning
Over the past year the Autism Alliance has run a series of conversations with people with lived experience and learnt ‘professional’ experience from across its membership, which comprises not for profit organisations that specialise in supporting autistic people. These people come from a range of settings, including social care, education, and wider community support.
The focus of the conversations has been on ‘practice’ – the approaches specialist professionals take when they support autistic people, and the evidence, knowledge, skills and behaviours that underpin these approaches.
As we talked about practice, one clear principle emerged – that understanding an autistic person as an individual is critical for effective support, because it enables the person’s needs to be met: and that this depends on building a strong relationship with the person, and often with their family, as well as requiring in-depth knowledge of autism.
We will be doing further work on the idea of ‘understanding’ as a core feature of practice; the strategies and challenges involved; and the skills, experience and personal characteristics of the practitioner.
However, this discussion in a professional context highlights a broader point.
There is evidence of recent positive shifts in public attitudes towards autism. More girls are being diagnosed as autistic[xxii], and more medical professionals are adapting the language they use to reflect the strengths of individual autistic people, as well as their needs. NHS England has published guidelines advising clinical practitioners to avoid negative or deficit-based terminology[xxiii].
But there is little sign of the sea change required to make any dent in the 91% figure.
To really make progress in addressing public stigma around autism and tackling discrimination, and to ensure autistic people have the services and support they need, we need to build understanding of autism.
How do we build a wider understanding of autism?
1. Increase public knowledge
We must do this in ways which move beyond stereotype, medical language and hearsay to show that autism is a natural human difference, as is neurodivergence more widely; that autistic people’s differences and needs are as rich, diverse and important as everyone’s needs in the population; and that neurodivergence isn’t a threat, but an opportunity to create even more value in the world, and to enrich our own lives by engaging with others.
The media play a key role here: they have power and influence, and should adopt a strong measure of collective responsibility for breaking down negative stereotypes[xxiv]. The education sector is equally important: the lack of understanding and support still prevalent in many educational settings[xxv] needs to change, and there is a golden opportunity to educate every child in the country[xxvi] about neurodivergence, mental health, and the benefits of meeting needs.
2. Be curious and connect on an individual level
Secondly, through building understanding of autism at an individual level. The process of building a relationship with someone is its own education, establishing the familiarity and trust which provide the basis for empathy and compassion. We need to increase non-autistic people’s capacity to be open to communicating differently so that when they meet autistic people in their daily lives, it is with open, compassionate connection and not with fear, asking: how can I understand and support you?
By adopting a positive position which sees the potential in everyone, and involves a sustained curiosity about how that potential can be realised, we can shift our viewpoint. To create a space for everyone to thrive, we have to go towards people, give them something of ourselves: understanding is a transactional process and we all thrive on connection. As well as understanding, we have to want to understand. We must never downplay the acute challenges autistic people and their families experience – but with positive energy, and a completely open mind, we can tackle stigma and discrimination, and build a world in which autistic people, and everyone in society, can thrive.
The benefits of understanding difference
Why should we understand autism and autistic people? Because it is central to removing the stigma and discrimination that autistic people continue to face across services and society, and addressing levels of inequality that are as shocking as they are unacceptable. Because we will only get autism acceptance if we have autism understanding. Because it will improve outcomes, and contribute to stronger communities and higher national productivity. Because it will save lives.
However, there is an even wider context. In an increasingly divided world, in which narratives of distrust and hate are circulating, achieving understanding of other people and their needs, interests and experiences feels both urgent and supremely important.
The Autism Alliance has made the point repeatedly that if we get the system right for autistic people, it will work better for everyone[xxvii]. This is a genuine opportunity for fresh thinking about policy and services, co-produced with people who have different kinds of minds. The principle that ‘understanding difference helps us do things differently’ is one we should all adopt as we face the challenges of the years ahead – not just in Government and public services, but across society.
To build a better world, we need to build it for everyone, and that means acknowledging, understanding, validating and celebrating difference; and identifying and meeting need. Autistic people, and other neurodivergent people, should be at the forefront of all social and political activity that seeks to achieve this aim.
References
[i] Autism Alliance (2024). Doing The Right Thing https://www.autism-alliance.org.uk/doing-the-right-thing [ii] Lever AG & Geurts HM (2016). Psychiatric Co-occurring Symptoms and Disorders in Young, Middle-Aged, and Older Adults with Autism Spectrum Disorder. J Autism Dev Disord 46(6), 1916-1930. doi.org/10.1007/s10803-016-2722-8 [iii] Mayes SD (2013) Suicide ideation and attempts in children with autism. Research in Autism Spectrum Disorders. 7 (1), 109-19. doi.org/10.1016/j.rasd.2012.07.009 [iv] NHS England (2024). Learning Disability Services Monthly Statistics, AT: July 2024, MHSDS: June 2024. digital.nhs.uk/data-and-information/publications/statistical/learning-disability-services-statistics/at-july-2024-mhsds-june-2024 [v] BBC News (2012). Timeline: Winterbourne View abuse scandal. bbc.co.uk/news/uk-england-bristol-20078999 [vi] BBC News (2024). Pupils mocked and put in headlocks by school staff. bbc.co.uk/news/articles/cp6643jd8nwo [vii] The Autism Act: Ten Years On, National Autistic Society/APPG for Autism, 2019[viii] Autistica (2022). Awareness isn’t enough: understanding is critical to acceptance. autistica.org.uk/news/attitudes-index-news[ix] Ibid.[x] 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 [xi] 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[xii] Conservatism in Crisis: Rise of the Bureaucratic Class (2024), authors unclear[xiii] Happé, Fletcher-Watson (2019). 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A preventative approach to public services – how the Government can shift its focus and improve lives, Institute for Government/UK Youth, May 2024 https://www.instituteforgovernment.org.uk/sites/default/files/2024-05/preventative-approach-public-services_0.pdf[xxi] Value for money: How to improve wellbeing and reduce misery, Centre for Economic Performance, London School of Economic (September 2024), https://cep.lse.ac.uk/_NEW/PUBLICATIONS/abstract.asp?index=11099[xxii] 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.[xxiii] https://www.england.nhs.uk/learning-disabilities/about/get-involved/involving-people/making-information-and-the-words-we-use-accessible/#autism[xxiv] https://www.city.ac.uk/news-and-events/news/2024/august/british-media-needs-to-change-negative-portrayals-of-autism# [xxv] https://www.theguardian.com/society/2024/mar/05/autistic-pupils-in-england-denied-right-to-education-as-absenteeism-surges-says-charity [xxvi] https://www.ambitiousaboutautism.org.uk/about-us/media-centre/blog/why-autism-acceptance-should-be-taught-schools [xxvii] Autism Alliance (2024). Doing The Right Thing https://www.autism-alliance.org.uk/doing-the-right-thing, Real Change for Autistic People and their Families https://www.autism-alliance.org.uk/real-change [xxix] https://www.gov.uk/government/publications/the-buckland-review-of-autism-employment-report-and-recommendations/the-buckland-review-of-autism-employment-report-and-recommendations