Why do we want change?
The Challenge
Awareness of autism is now almost universal. Autistic people are seen increasingly in the media and the voice of the autistic community is growing stronger in the UK.
With an increase in diagnosis of almost 800% in the past 20 years, it is becoming clear that many autistic people still remain undiagnosed, particularly older people.
With such an increase in autism awareness, you would expect society to be changing, removing long-standing barriers and enabling autistic people to live full and happy lives.
In fact, autistic people experience some of the greatest inequalities of any group in society – and have done so for many decades, even centuries, stretching back to times when solutions weren’t as readily available.
They routinely experience outcomes which most people would find shocking, and yet these outcomes are rarely reflected in public discussion or the media:
The Cost
Human potential
In failing to include and recognise autistic people, we are wasting the potential of hundreds of thousands of lives, and those of their families, to contribute to society
Many people who are autistic have shown the range of contributions they can make, from public figures such as actor, Anthony Hopkins; activist, Greta Thunberg; and TV presenter, Melanie Sykes – to everyday people working in the Royal Navy, as young authors, as doctors, photographers and business people.
The economy
We are undoubtedly missing out on the economic benefits of including autistic people in the economy. Employers like Auto Trader, Microsoft, TalkTalk and Marsh McLennan have shown that autistic people can thrive in employment and make a powerful contribution that reflects their specific strengths, as well providing their organisations with distinct, competitive advantages. Alongside this, a recent report by Pro Bono Economics found that doubling the current employment rate for autistic people could benefit the economy by up to £1.5 billion per year.
Add to this the savings that could be made by moving towards a preventative system of health and social care, rather than just funding short-term measures to deal with preventable crises, and the economic benefit of focusing on autism is likely to be considerable.
A progressive society
The inclusion of autistic people is still seen as a niche issue rather than a core marker of success for an inclusive society.
In taking this view, we are failing to respect the right of a significant group in society to a happy, healthy and fulfilled life. Everybody needs support, and autistic people are no different. There is nothing intrinsic in autism that means the support and adjustments needed by autistic children, young people and adults are less justified: only the discrimination of a society that sees some forms of difference as a deficit.
A society that works for autistic people would benefit everyone
Fundamental to the Autism Alliance’s mission is the belief that what works for autistic people can improve society for everyone. This is because the principles of a system which delivers Real Change for autistic people are principles we would all sign up to for ourselves. They include:
A model of education that meets needs as the basis for learning.
Public services that adapt to reflect individual needs.
Inclusive and accessible working environments.
A presumption that everyone has the right to live in their community, with early support that prevents the escalation of need towards crisis.
Why aren’t things getting better for autistic people?
Despite dedicated legislation and successive Government strategies and commitments, outcomes for autistic people have not improved as they should.
Reasons for this include:
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The rise in awareness of autism isn’t matched by a rise in acceptance and understanding. 91% of autistic people in the UK feel that society does not accept or only sometimes accepts them.
Fundamental misconceptions about autism persist: from expecting autistic people to be male, use few words and extraordinarily gifted; to nearly 30% of adults in Britain being unsure whether autism can be cured, 39% believing autistic people lack empathy, and over a third (35%) still believing that autism is a learning disability.
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It would be encouraging to say that outcomes for autistic people are improving. But they are not – and this is the other stand-out reason for focusing specifically on autism in policy and in social change: across education, health, social care, employment and justice, outcomes have stayed at broadly the same level for the past 15-20 years.
Despite dedicated legislation (the Autism Act 2009), successive Government strategies, and many pointed commitments, we have not seen the improvement in outcomes for autistic people and their families that should have taken place. Change hasn’t just stalled; it has barely started.
In fact, at the present time there is a danger that the huge cost pressures on public services and the impact of global uncertainty on attitudes across wider society, mean we go backwards with outcomes for autistic people declining rather than improving.
To tackle the specific, significant and system-wide barriers and discrimination facing autistic people, a different approach is needed from policymakers, based on understanding how systemic barriers hold back progress for autistic people. Government policy on autism has tended to focus on specific targeted initiatives and guidance for public services, and these have not been enough to drive change: at the system level, there is clear evidence that accountability is weak, funding is insufficient (and poorly allocated), and culture is discriminatory.
“Everything is a fight – it should not be a fight. To get a diagnosis is a fight, to get the correct support is a fight, getting the right education is a fight. It’s never ending and it shouldn’t be like that. It’s basically a question of money and understanding: there are too many obstacles in the way.”
Autistic adult, Autism Alliance focus group, 2023
