Strategy to improve the lives of autistic people

Health bosses have launched a multi-million-pound strategy aimed at improving the lives of autistic people.

Autistic people face multiple disadvantages throughout their lives, with too many struggling to get support that is tailored to their needs at an early enough stage and facing stigma and misunderstanding, often leaving them lonely or isolated.

Through this new strategy, steps will be taken to improve diagnosis, which is crucial to help people get the support they need, and improve society’s understanding of autism.

Backed by nearly £75m in the first year, it aims to speed up diagnosis and improve support and care for autistic people.

The funding includes £40m through the NHS Long Term Plan to improve capacity in crisis services and support children with complex needs in inpatient care.

The Department of Health and Social Care (DHSC) said the five-year strategy was developed following engagement with autistic people, their family and carers.

It will support autistic children and adults through better access to education, more help to get into work, preventing avoidable admissions to healthcare settings, and training for prison staff to better support prisoners with complex needs.

Nellie Allsop, an autistic woman and campaigner said: ‘I’m extremely happy to see the launch of the strategy.  

‘Having been diagnosed last year, age 25, I’m still yet to tell people close to me that I’m autistic, for worry that they won’t quite ‘get it’. That’s why I’m delighted to hear that this strategy aims to improve the understanding and acceptance of autism amongst the general public. 

‘I’m also pleased it will include plans to build the right mental health support in the community for autistic people.

‘As someone who avoided a hospital admission thanks to the work of an NHS crisis team, I’ve experienced first-hand the benefits of good mental health support in the community.

‘Nevertheless, more does need to be done to improve community support and understanding of autism within all community mental health teams – something I hope this strategy will address.’

There are approximately 700,000 autistic people in the UK and a large number experience health inequalities during their lives. 

The life expectancy gap for autistic people is approximately 16 years on average compared to the general population and almost 80% of autistic adults experience mental health problems during their lifetime.

The Covid-19 pandemic has exacerbated challenges many autistic people already face, such as loneliness and social isolation, and anxiety. 

This new strategy has been developed with the views and experiences of autistic people provided in response to the government’s call for evidence in 2019. The strategy will run until 2026 and aims to:

• Improve understanding and acceptance of autism within society: Developing and testing an initiative to improve the public’s understanding of autistic people.– both the strengths and positives as well as the challenges, working with autistic people, their families and the voluntary sector. This will help people recognise the diversity of the autistic community; that every autistic person is different. It includes improving understanding of the strengths and positives of being autistic, as well as the challenges people might face in their daily lives and how distressed behaviour can manifest itself.
• Strengthen access to education and support positive transitions into adulthood: Testing and expanding a school-based identification programme based on a pilot in Bradford from 10 to over 100 schools over the next three years. Early findings from the pilot show children are being identified earlier and getting support quicker.
• Support more autistic people into employment: Improving the accessibility of job centres for autistic people, to get them the right help to find jobs or employment programmes.
• Tackle health and care inequalities: Providing £13 million of funding to reduce diagnosis waiting times and increase availability of post-diagnostic support for children and adults, and address backlogs of people waiting made worse by the COVID-19 pandemic.
• Build the right support in the community and supporting people in inpatient care: Providing £40 million as part of the NHS Long Term Plan to improve community support and prevent avoidable admissions of autistic people and those with a learning disability, and £18.5 million to prevent crises and improve the quality of inpatient mental health settings.
• Improve support within the criminal and youth justice systems: Reviewing findings from the Call for Evidence on neurodiversity, and developing a toolkit to educate frontline staff about this, and the additional support people might need

Caroline Stevens, chief executive of the National Autistic Society said: ‘We and our supporters have long campaigned for a fully-funded public understanding campaign, significant investment in reducing diagnosis waiting times and better post-diagnostic support.

‘No-one should feel judged for being autistic, or to have to wait many months for a potentially life-changing diagnosis and vital help and support.  

‘We’re really pleased to see concrete actions to tackle this in the first year of the new strategy, alongside other important commitments. The following four years will be just as vital.

‘It’s crucial that the government invest in autistic people, and finally create a society that really works for autistic children, adults and their families.’

Early identification can play an important role in enabling children and young people to get timely support, which is crucial in preventing the escalation of needs. 

While autism is not a learning disability, around four in 10 autistic people have a learning disability.

Some autistic people will need very little or no support in their everyday lives while others may need high levels of care, such as 24-hour support in residential care.

Minister for care, Helen Whately said: ‘Far too many autistic people still struggle to get the support they need in childhood, and as adults – and this is often exacerbated by not getting a timely diagnosis.

‘This landmark strategy will help give autistic people equal opportunities to flourish in their communities as well as better access to the support they need throughout their lives.’

This strategy will align with wider government work through the National Disability Strategy and the Special Educational Needs and Disability (SEND) review. The government will ensure issues relevant to autistic people are considered as part of these programmes of work. 

This strategy’s accompanying implementation plan will lay the foundations in the first year, for what the government aims to achieve over the course of the next five years. It will be refreshed in subsequent years, in line with future Spending Reviews. 

Photo Credit – Marisa Howenstine