Real Change: a manifesto from the Autism Alliance
The Autism Alliance aims to bring together a strong voice for autism at a national level. The vision of the Alliance is for a world in which autistic people can thrive and live their lives as part of their communities, and our objective is to achieve real change for autistic people and their families.
What do we mean by ‘real change’?
Look at this article from the Guardian in 2003, twenty years ago. Lots about it no longer resonates, and much of the ideas, language and attitudes it expresses would not be accepted now.
But much of the picture is familiar in 2023. A lack of acceptance and understanding of autism, and families fighting for the basic support they need. While there is some good practice, social and mainstream media regularly report the struggles of parents and carers to secure the right support, whether in education, health or social care.
In 2011 BBC Panorama broke the harrowing story of abuse at the Winterbourne View Hospital. The subsequent serious case review report told how staff tormented, bullied and assaulted patients, and the Government set out a Programme of Action in response.
In September 2022, Panorama again revealed shocking abuse of autistic people and people with learning disabilities, at the Edenfield Centre. Since Winterbourne View, there have been other similar cases, including at Whorlton Hall and Cawston Park.
Whether or not the likelihood of such cases is reducing, any instance of abuse is unacceptable. The number of times this happens should be zero.
A 2003 survey by the National Autistic Society (referenced in the Guardian article) found that 60% of carers had found it difficult to get the support they needed from social services. In 2019, a report from the All-Party Parliamentary Group for Autism, supported by the National Autistic Society, found that 71% of autistic adults say they are not getting the support they need[1].
The proportion of autistic adults in long term inpatient mental health hospitals was higher in January 2023 (63%) than in 2015 (38%), despite successive plans to support autistic people to live in their communities[2].
Surveys by the National Autistic Society in 2007 and 2016 showed that the proportion of autistic adults in full time paid work was 15% and 16%[3]. In 2021, ONS data[4] showed that only 21.7% of autistic people are in employment, compared to more than half of disabled people.
In 2009, the Lamb Review[5] called for a radical overhaul of the SEND system as it was failing families. Almost a decade and a half later, both mainstream and social media continue to report stories of exhausted parents battling a system that does not meet the needs of autistic children and young people. 2021 figures[6] show that less than half of autistic children and young people say they are happy in school, and in 2022 only 20% of autistic children achieved grades 5 or above in English and Mathematics GCSEs, compared to almost 52% of all pupils[7].
Although key national datasets began to include autism in the early 2000s, autism has been a specific priority for Government policy since 2009. In England the Autism Act was passed that year, providing the first dedicated legislation for autism, and paved the way for national strategies and programmes, the most recent in 2021. Similar national approaches, and some new legislation, were implemented in Northern Ireland, Scotland and Wales.
Some progress has been made. Awareness of autism is now almost universal, and the NHS has a dedicated national programme to tackle health inequalities for autistic people. Individual organisations have invested in autism awareness and training programmes. The Department for Education funds the Autism Education Trust, providing resources for schools and other educational settings. The NHS has launched mandatory autism training for healthcare staff following the tragic death of Oliver McGowan in hospital in 2016 and the tireless campaigning of his parents. In Scotland, a new Learning Disability, Autism and Neurodiversity Bill is in progress, and in Northern Ireland a new Autism Reviewer role is being established to oversee strategy implementation.
But the before/after examples above show that there has not yet been real change. The system of care, education, health and justice is still failing autistic people too often.
Why is this? Systems are complex and many different factors are involved, but three underlying issues stand out.
Accountability for real change is hard to identify.
Who, ultimately, is responsible for improving the lives of autistic people? Whose job is it to ensure that outcomes are actually improving and inequalities are reducing? Whose job is it to end the abuse of autistic people in mental health hospitals?
In a complex system, with many individual players and many competing priorities, accountability can easily be diluted. This feels even truer now, when so many services are close to breaking point.
Having a national strategy for autism is welcome and important. Government Ministers with responsibility for care, and for special educational needs and disabilities in education, all have a role to play. But without the unwavering championship of one person with the right level of authority, and without the buck stopping at one person’s door, it is all too easy for focus to slip.
Equally, it is vitally important that the right data is collected in order to hold this person, and the system, to account for real change.
Real change means addressing the underlying causes of system failure
Since the Autism Act in 2009 there have been a range of initiatives to improve the lives of autistic people – an Autism Innovation Fund, the ‘No voice unheard, no right ignored’ consultation, the Transforming Care programme – and these are welcome. But the impact of these initiatives on outcomes for autistic people has been limited, because the underlying causes of system failure persist. For example:
Providing excellent guidance for adult social care commissioners on specialist autism provision won’t improve outcomes unless there is enough funding to commission the right support.
Setting clear standards for supporting autistic children and young people across educational settings won’t improve outcomes unless headteachers and children’s services leads are held accountable for those outcomes.
Providing high quality training on autism for staff in health and social care won’t improve outcomes across the board unless the workforce is valued and motivated, with better pay and conditions.
Commissioning formal reviews following cases of abuse in healthcare settings is critical, but without continuing change in culture at managerial and grassroots level, investment in the workforce, and sharper accountability, outcomes are unlikely to improve.
There are always exceptions, typically the result of action by particular individuals in positions of authority who are committed to autism. These include mainstream schools with excellent provision for autistic pupils, local authorities commissioning strong systems of community-based care for autistic people in their area, and collaboration between the NHS and charities on healthcare interventions that reflect the needs of individual autistic people.
Across the Autism Alliance and beyond, we see specialist autism charities dedicated to the autistic children, young people and adults they support, with staff who devote their lives to listening, meeting their needs and helping them to thrive.
But in the majority of cases, the underlying causes mean that the system is stacked against autistic people and their families.
And as with accountability, the rule of specificity applies. School heads, local authority staff, doctors, care workers – all are overstretched and face many competing priorities. Without elevating autism as a specific priority, the default (understandably) is to fit in action where time allows, rather than choosing to ‘go the extra mile’.
Social change is the bedrock of real change.
When individual people are (instinctively and by default) motivated to accept, to seek to understand, and to respond to the needs, interests and experiences of autistic people, the system has a much better chance of working.
‘Culture eats strategy for breakfast’, and if we could replicate the inspirational individuals who prioritise autism everywhere in the country, across all services, we would have moved far closer to a system that can deliver real change.
Positively, social change is underway. Awareness of autism is now almost universal. Acceptance of autism is improving, helped by some recent high profile champions – see Chris Packham’s recent two-part documentary Inside Our Autistic Minds.
But there is still a huge distance to travel.
We need to build on the gains we are seeing in autism awareness and acceptance so that everyone in society has the motivation to promote and support the inclusion of autistic people, and the knowledge and skills to do it.
This is more than a public awareness campaign. It is about the power of the movement: a growing understanding that autistic children, young people and adults are a fundamental part of society, with equal rights and opportunities, and huge strengths.
It’s sometimes noted that when positive changes in society are already underway, policies that reinforce these changes are the ones that succeed. It should be the job of Government to develop policies that reflect and amplify social change. Use positive language, talk about autism with pride not stigma, champion the rights of autistic people, elevate their stories, co-produce policy with autistic people, and employ autistic people as public service leaders and Ministers. The first autistic Prime Minister would be a major step.
And, without forgetting the critical economic dimension to Government policy, it should be noted that as well as a social and moral case for change, there are powerful financial arguments to invest in the right types of education, care and support for autistic people. In 2014 the total cost of failing to provide timely support and crisis prevention for autistic people, was estimated at £32 billion[8]. As well as enabling better lives, providing the right support, at the right time, in the right place, reduces escalation of need and leads to lower costs in the future.
Real change happens
Compare the world now to the world a century ago, and although there have been tragedies, in many areas of human life there is greater equality and inclusion. For autistic people, there have been many positive changes in attitudes and understanding.
But the job is nowhere near done, and huge challenges remain.
Autistic people face some of the greatest inequalities of any group, with life expectancy considerably lower than the general population, an increased likelihood of poor mental health, and poorer outcomes across education, employment and justice. We must hope that people look back on our current time as a step on the journey to a world where autistic people have equal life chances on every measure.
The National Autistic Society has released its Moonshot Vision, outlining the type of society we should seek to build for autistic people and their families, and how we will know we have succeeded.
Complementing this work, the Autism Alliance is advocating for Real Change.
Alongside new initiatives, national autism strategies developed by Governments across the UK should assess what is required to achieve real change, and put in place programmes of reform and investment that are able to succeed. By strengthening accountability, addressing the underlying causes of system failure, and continuing to build positive values and behaviours across society, we can build a world in which autistic people can thrive.
[1] The Autism Act, Ten Years On, All-Party Parliamentary Group on Autism, 2019
[2] Assuring Transformation Dataset Monthly Return, NHS Digital, February 2023
[3] Autism Employment Gap Report, National Autistic Society, 2016
[4] Outcomes for disabled people in the UK: 2020, ONS, February 2021
[5] Special educational needs and parental confidence, Brian Lamb, 2009 (for the Secretary of State for Children, Schools and Families
[6] School Report 2021, National Autistic Society, 2021
[7] GCSE and equivalent attainment by pupil characteristics in England, Department for Education, 2022
[8] Buescher AV, Cidav Z, Knapp M, Mandell DS. Costs of autism spectrum disorders in the United Kingdom and the United States. JAMA Pediatr. 2014 Aug;168(8):721-8. doi: 10.1001/jamapediatrics.2014.210. PMID: 24911948.