Can new Nice guidelines improve care for adults with autism?

Adults with autism should be supported to find and hold down a job, which would have innumerable benefits for their care

The NHS needs to recognise the symptoms of autism in adults better, say new guidelines from Nice, the government’s NHS watchdog. Because autism can affect people past childhood and there are variations in assessment criteria, it is a condition that can often be overlooked by care professionals – with severe consequences for those left undiagnosed. The new guidelines seek to improve this, identifying the most common, recognisable characteristics of autism and, in turn, emphasising the need for improved adult diagnostic care.

The guidelines have welcomed by campaigners; the National Autistic Society called them an “excellent tool for NHS professionals to improve their care of adults with autism”. Currently, 22% of adults with autism have paid for their own diagnosis after being unable to gain one through the NHS, the society’s research has found. Some 54% of people who were diagnosed over the age of 18 found the process difficult, 50% finding it “too stressful”. Some 52% have been misdiagnosed.

The impact of such failings can be devastating. Left undiagnosed, autism can result in isolation, confusion and economic exclusion. “One in three adults with autism say they have experienced serious mental health problems due to a lack of support,” says Mark Lever, the society’s chief executive.

In addition to improvements on diagnosis, the guidelines focus on ways to help adults with autism enter work. Nice, the National Institute for Health and Clinical Excellence, recommends that every adult with the condition (who does not have a learning disability or who has a mild one) should be offered more individualised support if they are having difficulty obtaining or maintaining employment. The likelihood of experiencing this difficulty is high because only 15% of adults with autism are in full-time, paid employment despite more than three-quarters on incapacity benefits saying they want to work.

Successfully implemented, the Nice recommendations would mean help for people preparing for interviews – fundamental when dealing with a condition whose core features are persistent problems with social interaction, communication, and change – while prospective employers would be supported in autism awareness and making reasonable adjustments.

If needed, there are fiscal – as well as moral – incentives for service providers to implement both key recommendations from Nice. Fitting with current rhetoric, there’s a clear attraction to moving people from benefits to employment. Earlier diagnosis would also lead to savings for the NHS; people who have been misdiagnosed or failed to receive any diagnosis would be more likely to require intensive and expensive support at a later stage.

How easy – and likely – implementation will be remains unclear. Already highlighted as a problem in receiving a diagnosis, regional variation may be a core hurdle in enacting the proposed solutions. Though it is hoped that the recommendations will see a closing of the gulf between one region and the next, it is feared how well they will be implemented and whether they will fall victim to the postcode lottery that hampers adults needing support.

Austerity measures are likely to compound the problem further. “It is vital that local health bodies and local councils look carefully at the guidance as it clearly sets out how, in the long run, investing in support for adults with autism will save money to the public purse,” the National Autistic Society stresses. Local health bodies and councils are “urged” to work together and ensure they are looking at “long term gains rather than short term savings”.

For Sarah Hewitt, diagnosed with Asperger’s syndrome at 26, the necessity is clear. “Life before my diagnosis was full of confusion and angst,” she says. “Relationships with my family, my peers and my teachers deteriorated [throughout school], and years of isolation and depression followed.”

Misdiagnosed with mild depression and treated with anti-depressants and counselling, she experienced the “frustrating and unhelpful” strain that the Nice guidelines highlight. Unable to sustain long-term relationships with her colleagues and managers, her performance at work suffered. It was, she says, a “cycle that would have continued indefinitely if I’d never been formally diagnosed”. She diagnosed herself after reading about the symptoms online .

The need is clear. The question now is whether the recommendations can be properly implemented.