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Caroline Stevens: ‘My son’s experience of autism made me want to fight for change’

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The Conservatives promised better community-based care. Now they must deliver, says the head of the National Autistic Society

Wed 8 Jan 2020

Last modified on Wed 8 Jan 2020

Caroline Stevens first had contact with the National Autistic Society in 1997 after calling its helpline. The information she acquired helped her to get a diagnosis for her son Jack, then just over two years old. Stevens joined a local NAS branch, run by volunteers. There, she learned about autism and found practical help and support from other parents following the diagnosis – a time when, she says, “you feel quite isolated and alone”. Jack was diagnosed with autism, a learning disability, a sensory processing disorder and a sleep disorder. He cannot speak. She adds: “It was very difficult for him growing up, and we experienced a lot of the challenges that many families go through.”

Now Jack is 25 and Stevens is now the NAS chief executive. She arrived in post in November, just after the general election campaign had kicked off. The three main parties’ manifestos all included specific mentions of autism. The Conservatives pledged to “make it easier for people with learning disabilities and autism to be discharged from hospital and improve how they are treated in law”, and promised £74m over three years for additional capacity in community care settings.

Stevens says these are both a priority, given the countless media stories highlighting “the scandal of autistic people stuck inappropriately in mental health hospitals”. The NAS will track where the new money is spent and push for increased funding across the entire social care system, she says. Reviewing mental health law, which makes it “too easy” to deprive autistic people of their liberty, is also crucial. Other Tory pledges include a new cross-government strategy for disabled people, and special educational needs funding. “Our charity will be making sure that these are all taken forward in a way that can help transform autistic people’s lives,” says Stevens.

Commitments made by the last Tory government include an autism awareness campaign, and a new autism strategy for England that will include children for the first time. The NAS expects publication of the strategy in the coming months.

“We want to see a new all-age autism strategy that not only sets ambitious goals for improving support, but sets out an achievable – and funded – plan for reaching them. This is vital to create a society that works for autistic people.”

Stevens’ role is the result of her decision to make supporting autistic people part of her professional as well as her personal life. Her son’s “very high levels of support needs” meant that she “had to fight for pretty much all the support all the way through”. She switched from hospital management to the voluntary sector, and later became chief executive of a pan-disability charity for children and young people. She realised just how many other people were struggling. “What saddened and disappointed me was that, up and down the country, there are thousands and thousands of families struggling with the lack of services and support. It shouldn’t be like this. What my family had been through gave me the fight and passion to try to change things.”

Up and down the country, there are thousands of families struggling with the lack of services and support

With almost 3,000 staff and 2,000 volunteers across the UK, the NAS delivers a variety of services, including schools and residential supported living, to autistic people with complex support needs. The other part of its mission is to influence policy and change attitudes towards autism. Awareness of autism has “increased massively” over the years, but, Stevens says, the NAS defines autism as “a lifelong, developmental disability that affects how a person communicates with and relates to other people, and how they experience the world around them”. She cites a recent NAS campaign to increase understanding of what it’s like to be autistic, Too Much Information, but admits that there is “still a long way to go … there is a big job to be done about ensuring that professionals, as well as the general public, have a greater understanding of autism.”

The challenge was laid bare in a recent joint inquiry with the all-party parliamentary group on autism (APPGA), The Autism Act: 10 Years On, which looked at the impact of the landmark legislation for autistic adults in England. The overwhelming picture that emerged was “one of deeply concerning unmet need”, with the support available going backwards. Stevens explains: ““If there is greater understanding around the needs and challenges of autistic people, then professionals will know and understand what services need to be in place as well.”

Only 21% of councils in England are fully complying with the legal duty to provide autism training to all health and care staff. Just prior to the general election, the government announced £1.4m to trial mandatory training for every NHS and social care worker prior to a wider rollout. “That’s not enough, but it’s a start,” says Stevens. Rolling it out nationally would require more resources, she says, and there would need to be clarity on who would foot the costs.

It’s not just training that is crucial, but ensuring that services are tailored to meet autistic people’s needs. What autistic people desperately need are more community-based services, such as day services to avoid social isolation, she explains. “Being stuck at home with nothing to do and no one to see will impact on a person’s wellbeing, and may lead to a ‘crisis point’,” she says. “You need to intervene early.”

Research shows that almost eight in 10 autistic adults will experience mental health problems during their lifetime. The lack of community-based mental health services see many end up in crisis, and a growing number are admitted to mental health hospitals, as it is the only form of care they can access. Often they get stuck there because of that very lack of community-based support. It is, says Stevens, a “vicious cycle”.

Moreover, the definition of autism as a mental disorder within the Mental Health Act means that autistic people can be inappropriately detained in hospitals against their and their family’s will, sometimes for years. A report by the parliamentary joint committee on human rights, published last month, called for the legislation to be overhauled. The government then promised that all 2,250 inpatients with learning disabilities and autism in mental health hospitals will have their care reviewed within 12 months. Stevens says this should be happening anyway.

The NHS long-term plan has a commitment to improve community mental health support and halve the number of autistic people and people with learning disabilities in inpatient settings by 2023-24. Achievable? “If there is a true commitment, then yes, but that needs to be funded and there needs to be action,” says Stevens.

Now the election is over, Stevens is clear there is an opportunity to hold all parties to account on making sure autism is a priority. Stevens’ mission is clear: “To create a society that works for autistic people.”

Age: 50.

Family: Married, three sons including Jack, who is autistic.

Lives: Market Harborough, Leicestershire.

Education: BSc pharmacy, De Montfort University, Leicester; MBA, Open University.

Career: Nov 2019 to present: chief executive, the National Autistic Society; 2013-19: chief executive, KIDS; 2009-13: chief operating officer, British Lung Foundation; previously: hospital managing director, operating theatre manager, hospital pharmacy manager and community and hospital pharmacist; 2007-09: managing director, Aston University day hospital; 2005-07: operating theatre manager, Bupa hospital, Leicester; 2003-05: pharmacy manager, Bupa hospital, Leicester; 2002-03: clinical ward pharmacist, Bupa hospital, Leicester; 1991-2002: consultant pharmacist and store manager, Boots UK plc (multiple sites across Leicestershire).

Public life: Trustee at Dementia Carers Count; trustee at Homefield College, a small independent specialist college in Loughborough for young people with learning disabilities and autism; vice-chair of the partnership board, Council for Disabled Children.

Interests: Walking Nell (border collie) on the North Yorkshire beaches and moors, and spending time with family and friends.


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