A National Autism Strategy isn’t a distraction from the real business of reform: it is the real business of reform

In November the House of Lords published a landmark report on the Autism Act 2009, following a year-long inquiry.

The Autism Act was the first English law to address the acute social inequality experienced by a specific group in society. The Act requires the Government to have a specific strategy to address the inequality experienced by autistic people.

The House of Lords’ report showed that since the Autism Act, the strategies developed by successive Governments have not changed the social inequality autistic people face. This is because the barriers that prevent autistic people from leading happy, fulfilled lives are systemic, deep within the culture of our society and ingrained in our public services.

As a result, autistic children, young people and adults remain systemically excluded. The impact of this is stark and shameful: shorter life expectancy, higher risk of suicide, mental health crisis, exclusion from education, family breakdown, long-term confinement in mental health hospitals, and one of the lowest employment rates of any group in society.

The Lords Committee’s recommendation was simple: develop a new National Autism Strategy that addresses the systemic barriers autistic people face and involve autistic people and their families fully and meaningfully as the new strategy is developed.

The Government has responded to the report, and the response shows no sign of engaging with this recommendation. Instead, the subtext is that general reform is the answer, with the implication that this will address the barriers autistic people face.

This is the same philosophy that has failed repeatedly since the Autism Act.

Autism is a lifelong developmental difference. Autistic people are often also neurodivergent in other ways, for example having ADHD, and commonly have co-occurring physical health conditions. Mental health conditions frequently arise because of the barriers autistic people face. Some autistic people use few or no words, and many autistic people have a learning disability.

Autistic people’s experiences are incredibly diverse and are different to non-autistic people’s experiences in some fundamental ways, including social and communication approaches, ways of focusing, sensory sensitivity, and tolerance of uncertainty. Many autistic people mask their experiences, hiding them behind what the world requires. Many others face substantial barriers in expressing their needs. When leaders and staff lack specific knowledge of autism and the diversity of autistic experience, and do not understand autistic people’s specific experiences in context, services are not provided or adapted and these differences become distress: a steady, and sometimes rapid, accumulation of tension, micro-aggression, and trauma, which over time has severe consequences.

Equally, specific shifts in values and beliefs are required across services and society for autistic people to be fully included and supported. Even if largely unconscious, a culture that sees autism only as a ‘disorder’, and autistic people as ‘less than’, is not going to change outcomes. Yes, there are clinical processes with evidence of benefits for autistic people’s lives. But these are too often still portrayed as ‘treatment’, implying autism is an illness: and used across society this language simply underlines the stigma autistic people and their families face, making it harder to respond genuinely and fully to their needs as individuals whether that need is low-level or intensive. As we have written elsewhere, a shift in how we think, talk and write about autism is required, and it should be led by autistic people and their families.

We then come to diagnosis. The number of people diagnosed as autistic has increased steadily during the past 25 years, largely because of greater awareness, improved detection, and a lowering of the diagnostic threshold that reflects better understanding of autistic people’s experiences. Some of the significant trends have included the diagnosis of more females, older people, and people who are autistic and don’t have a learning disability. Many groups remain significantly ‘under’-diagnosed. A related factor in rising diagnosis, although less well-understood, is likely to be environmental: that changes in the spaces, expectations and processes of education, employment and society have pressed even harder against autistic experience, leading to a more visible presentation of need amongst larger numbers of children, young people and adults. This seems likely to have been a particular pressure for autistic children, young people and adults without a learning disability, who are more likely to engage with traditional ‘universal’ public services.

There is no autism ‘epidemic’, but you’d be forgiven for thinking the opposite given the efforts of the media to sensationalise rising diagnoses as something excessive and unaffordable, and the misinformation about ‘causes’ of autism shared by politicians in the US. To add to the systemic barriers autistic people already face, fuelled by this narrative in recent years there has been a growing distrust of the very fact the autistic population is rising.

This is starting to have some chilling effects on policy. For some in public administration, rising autism diagnosis is just a problem that is draining resources; for others, it is the ‘overdiagnosis’ of sensitive people who should learn to deal with the knocks of life. Both perspectives are as harmful as they are a denial of reality: the evidence is clear that people referred to autism assessment services almost always present with genuine healthcare needs, and are at significant risk of harm.

Yes, there is evidence of some misdiagnosis of autism, but in these cases other types of neurodivergence, or other developmental needs, are typically present. And yes, autistic experience as it is understood today is expressing great diversity through a single word, and it is important that no group of autistic people is further marginalised as a result. Some autistic people need very little support, while others need intensive support, and it is vital to recognise and meet all levels of need.

But rising diagnosis is neither human conspiracy nor human failure. Societies evolve, and in the continually increasing understanding of neurodivergence we are living through a societal shift as seismic as gender equality and civil rights. This is very far from a threat. On the contrary, it is a huge opportunity: to better understand more people so we can meet their basic needs, recognising that when we meet people’s basic needs, they are more likely to have better lives.

Taken together, the cumulative impact of the systemic barriers autistic people face has been and continues to be devastating. A lack of specific knowledge and understanding of autism; a culture of unconscious (and, unfortunately, conscious) bias against autistic people; and a distrust of rising autism diagnosis.

These barriers stop policies and services from reaching autistic people and their families, engaging them meaningfully, and improving their lives.

They reinforce and magnify the aspects of public service design and governance that are already most likely to fail autistic people: particularly inflexibility in funding, and unclear or fragile accountability.

They mean that at all levels, decisions are more likely to go against autistic people and their families, and basic human rights are more likely to be marginalised or ignored completely.

This is the real reason we need a dedicated, specific approach for autistic people in policy.

Not just because it is a legal requirement, enshrined in the Autism Act 2009.

Not just because such a significant population is involved: over a million people in England are autistic, both diagnosed and undiagnosed.

Not just because autistic people face unacceptably poor outcomes: so do other groups, although the severity of autistic people’s outcomes stand out.

But because the barriers that hold back autistic people’s lives are specifically related to autism and our systemic failure of autistic people.

Some policies make a difference. Mandatory autism training for healthcare workers is the right approach, and Specialist Autism Teams open up, however temporarily, space for services to genuinely adapt to autistic people’s needs. Many brilliant people - teachers, social workers, health professionals, local commissioners, parents and carers - try to work through or around the system, drawing on imagination, determination and passion to increase the chances of a good outcome.

But helpful and well-intentioned as those policies may be, and wonderful as these people are, this is not enough. Training knowledge and skills without corresponding changes in culture doesn’t have lasting impact. And Specialist Autism Teams are treated as additional expenditure: lose the Team and you lose the space it opens. Without addressing systemic barriers directly, the system closes back down, and things continue as they were.

A National Autism Strategy is not a ‘nice to have’, a box to tick, or a distraction from the ‘real business’ of universal reform. It is not a niche issue in policy.

It is an essential requirement to address the acute inequality and human rights abuses faced by a section of our society with everything to give and every wish to thrive and succeed.

It is a mechanism for ensuring specific, deep barriers - in knowledge, understanding and culture - are actually addressed.

It is supported by clear economic evidence that addressing these barriers would drive more cost-effective spending of scarce public funds, and in many cases lead to cost savings.

And reflecting the original rationale for the Autism Act, it is an opportunity to respond to a leading edge of our society’s evolution, creating momentum and support for a bold new approach across policy and universal services, at the point when it is most required. 

Autism is not new, and it is not and has never been, a threat. Intolerance and ignorance of autism, however, is a barrier we cannot afford to ignore.

Focusing just on general reform, however eye-catching it is, may see things improve, but it won’t address the sustained systemic failure of autistic people in education, employment, healthcare and the justice sector. And it won’t deliver the generational moment of change required so desperately across policy and in wider society: a focus on respecting, understanding and meeting need as the basis for better outcomes and a stronger economy.

(Photo by Maria Thalassinou on Unsplash)