The Autism Alliance launches Breaking Point
The law is being broken every day in England - and autistic people are paying a heavy price.
The adult social care system in England is in crisis. The chronic underfunding of the sector, the struggle to find and keep the right staff when wages are so low, and problems with the quality of care, are all well known. Social care is seen by many as the poor relation of the health service, and its continuing neglect is damaging individual lives and the wider economy.
What is less visible are the profound consequences of the social care crisis for autistic adults and their families. Care and support, given by specialist providers that understand autism, plays an essential role in helping autistic people lead happier, healthier, more fulfilled lives. Many rely on the social care sector to live well and actively in their communities. But thousands of autistic adults are not receiving the care they need.
Why is social care so important for autistic people?
Autistic people face some of the greatest inequalities of any group in society, across life expectancy, health and wellbeing, and employment. These are the result of compounding factors across society: continuing stigma and discrimination based on a lack of acceptance and understanding; public services that cannot provide appropriate support; and a society that puts barriers in their way at every level. Social care is vital in helping address these inequalities, yet the crisis in care is simply reinforcing the status quo. Autistic people face a double disadvantage.
“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 and focus group participant, 2023
New research reveals law is broken every day
The Autism Alliance is launching a new campaign to highlight this human rights injustice, and call on the Government to act. The Breaking Point Campaign is based on new analysis, commissioned by the Autism Alliance from Cordis Bright, and survey and focus group work carried out by the Autism Alliance in 2023.
What we found was not unexpected given the poor outcomes autistic people face, but no less shocking:
Over 10,000 autistic adults in England are not receiving the social care they need. They are most likely – but not exclusively – autistic adults with a moderate learning disability, who may need support with mobility, personal care or mental health.
There is likely to be an even larger gap in specialist community-based support – such as local peer support groups, and advocacy services – that helps autistic people maintain their health and wellbeing.
Over three quarters of autistic adults (77%) reach crisis point while waiting for care. Many are detained in mental health hospitals, where they can wait years to be discharged, and face medication, restraint, and trauma. Others experience family breakdown.
Autistic adults and their families regularly wait over 2 years for care to be provided, and even where care is in place, almost half (48%) say it does not meet their needs.
Autistic adults and their families have a poor experience of the care system, with 58% receiving poor support as they try to secure care.
Not only is this unacceptable from a human rights perspective, it is in contravention of the Care Act 2014, which says clearly that people with an eligible need for care should have their need met. The failure to provide care for autistic adults whose need is clear means that effectively, the law is being broken every day across the country.
What needs to change?
We also spoke to local authority commissioners, social care providers, and autistic people and their families about what needs to change to remove the barriers to accessing care. There was strong consensus, which is important for policymakers to note. Everybody agreed that we need to see:
More understanding of autism at all levels of the system, from commissioners and social workers to care providers.
More support for the social care providers that specialise in supporting autistic people and their families, so there is enough provision to meet demand.
A clearer way of identifying high quality social care provision for autistic people.
What is the price of change?
The Breaking Point Campaign calls on the Government to close the gap in care for autistic adults and their families in England. Lives are being damaged and opportunities lost. We have estimated that the cost of closing the gap would be between 0.4% and 0.7% of total national spending on social care: this is achievable, and could be paid for by achieving the aims of the Government’s Building the Right Support programme, and shifting spending from crisis intervention to community-based care.
As well as a clear social case to act, there is a strong economic case. Many autistic people can work and have significant strengths, and with the right support can live in their communities and take up employment. Investing in the right care will also reduce the reliance on costly long term inpatient facilities.
But fundamentally, the system needs to change. In Real Change for Autistic People and their Families, the Autism Alliance identified the need for system-level reform, including for social care, and measures that the Government could take to unlock better outcomes for autistic people and their families. It is quite clear what needs to happen, but we need a change in the Government’s position. They cannot stand by any longer while the system fails. We need bold political leadership to drive through a new funding settlement and reform programme for social care.
“We feel so burnt out because we’re fighting a system that should be working to help us – it sees us as a problem not society as a problem. We behave differently, we may not understand the social rules. We’re still people and still human beings and we need to be valued and we need to be nurtured.”
“All of it is on you, all of the time, and it does my head in – you feel like you’re the problem and you’re not, it’s the system and it just grinds you down.”
Autistic adults and focus group participants, 2023
Like other organisations advocating for social care reform, including the Social Care Future movement, the Autism Alliance believes that a compassionate, effective and well-funded social care system is fundamental for the economic and social fabric of our country. But crucially, we also believe that the changes that will improve care for autistic people will improve care for everybody – and so Government should use the voices of autistic people as a central guide to reform.
What can we do?
Full details of the Breaking Point Campaign, including how to support and a downloadable campaign pack with social media posts and resources, are on our Breaking Point campaign page.
The Autism Alliance will be writing an open letter to the Prime Minister and Secretary of State for Health and Social Care, with co-signatories from across the charity sector and the medical profession. We will also be briefing leaders and advisers from across the political parties, urging them to include commitments in their election manifestos that will improve outcomes for autistic people.
Autistic adults and their families are at breaking point, and the social care system is close to breaking too. The Government cannot let this continue: the stakes are too high, for autistic people, and for everyone.