The new autism champion interview

 The Department of Health’s new autism adviser Elaine Hill tells Natalie Valios how the personalisation agenda provides an opportunity for people with autism to shape services

The Department of Health has made autism something of a priority this year. In May came the announcement of the first national adult autism strategy, due to be published next year, plus £500,000 to fund the first prevalence study into the numbers of adults with autism and their transition needs.

Last month, Elaine Hill became the DH’s specialist adviser for autism. Her role will be to take the strategy and the study forward. She comes to the DH straight from heading up the North East Autism Consortium. This initiative, set up in January 2006, brought together 12 local authorities and 12 primary care trusts to improve strategic planning, commissioning and delivery of services to people with autism.

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Her background bodes well. In fact, many of her colleagues at the consortium, carers and the National Autistic Society asked her to apply for the DH role – all aware of the work she was doing in the North East.

“It shows how long people had waited for a role like this and how keen they were for somebody to get it who had an element of understanding,” she says.

For her part, she was keen to take on the role. “It sounded like an extension of all the work I’d done for the last two years,” she says. “So there are elements of the job that aren’t new, even though it’s a new job.”

When Hill was head of the consortium, she became aware of the level of ignorance about autistic adults. “Looking back, I realised that I’d worked with people with autism but they were clumped into mental health or learning disability services.”

Hill will need to tackle this treatment of autistic adults, but she thinks the strategy’s timing is fortuitous: “We’re lucky at this time because we have a drive for personalisation and full citizenship, with individual budgets to achieve that. They can help people with autism.”

She is aiming to have the strategy’s themes sorted by April and wants to establish a reference group to develop it. “Part of my work is about engagement and consultation. We don’t want to be sat in a room writing the strategy, we want to get forums in place.”

While there are existing models of engagement she can refer to – the consultations for Our Health, Our Care, Our Say, and the strategies for dementia and carers – the fact that the very people she wants to engage are autistic will make communication more complicated.

Hill wants the strategy to prioritise the late diagnosis of autism, lack of services, and poor transition from children’s to adults services. “We don’t want models of high spend specialist support services that might be miles away from where people live. They want support in their community,” she says.

Breaking down barriers

“I want the strategy to go across all areas including education and housing – 60% of autistic adults live with their parents. I would hope that some of the strategy work is about breaking these barriers down, but to get the right services the strategy would need to look at training for staff.

“Valuing People and Valuing People Now were drivers for how we should work with people with learning disabilities and autistic adults need something similar.”

It’s not known exactly how many people have autism in the UK. Estimated figures in a London School of Economics’ report, Economic Consequences of Autism in the UK, suggest there are 540,000 living with the condition, of which 433,000 are adults. It puts the annual spend on services for autistic children at £2.7bn and £25bn for adults, of which 59% was spent on health and social care, 39% on the costs of lost employment.

“There must be ways of using that money so that people can lead fuller lives,” says Hill. “If people have more choice and personalised services there may not be saving in the short term but it’s ethical.

“The National Audit Office research is due to report back early next year and if we have this and the prevalence study it will give us a clear picture about where we should be directing our energies.”

The government has put £500,000 into development of the strategy – but what about afterwards, will it fund putting the recommendations into practice?

“I’m confident that there’s a commitment to the delivery of this strategy,” says Hill. “We need to assess what we need to do, how we do it and what it will cost.”

So what does she think will be the most important thing to come out of the strategy?

“People ring me, not because they want anything but because they want me to listen to their experiences and use them. I want them to see they’ve been listened to and we have responded.”

National Autism Strategy  

National Audit Office report 

LSE report, Economic Consequences of Autism in the UK 

This article is published in the 4 December 2008 edition of Community Care magazine under the headline ‘Autistic adults need their own Valuing People’