Last reviewed 10 August 2021

There are an estimated 700,000 autistic adults and children in the UK. Deborah Bellamy explains the new autism strategy and the impact it is likely to have on those affected, including family members, carers and services.

As a society, there has been progress since the introduction of the 2009 Autism Act, realising improvements in support for autistic adults and greater awareness of autism. In 2019, autism was included as one of the priorities in the NHS Long Term Plan, in recognition of the work that still needs to be done to improve access to healthcare for autistic people, with the strategy intended to reinforce this.

Replacing the preceding 2014 autism strategy, Think Autism, the new strategy also encompasses children and young people. This reflects the importance of ensuring they are diagnosed in a timely fashion and receive appropriate support from the outset and throughout their lifetime.

The strategy and implementation plans are in accordance with the Secretary of State for Health and Social Care’s powers under section 1 of the Autism Act 2009.

Background

The All-Party Parliamentary Group on Autism (APPGA’s) The Autism Act: 10 Years On report, disclosed there is still a significant lack of understanding autism amongst the public, including what it means to be autistic and the diversity of the autistic community.

According to the National Autistic Society, issues include:

  • two in three autistic adults in England do not receive the support they need

  • just 14% felt there were sufficient mental health services in their area

  • 50% of parents stated their child had to wait more than a year to obtain support at school.

There are currently regional inconsistencies in service availability and data regarding autistic people, not in hospital or accessing acute services. Complexities in accessing primary and secondary services are evident within the non-inpatient population and there needs to be increased understanding of their support needs and how to reduce health inequalities of this group.

One of the limitations of previous autism strategy was lack of funding to enable sustained change. The Government has committed almost £75 million to the first year of this strategy which will be invested in development of a public understanding campaign, reducing diagnosis waiting times and increasing crisis support in the community.

There are currently significant wait times between autism referral and diagnosis for adults of between 10 and 28 months, and children between 10 and 30 months. With an increasing identified population of autistic people requiring support, there is limited provision available both pre and/or post diagnosis, and the strategy and associated funding aims to address this.

Key strategy themes

  1. Enhancing understanding and acceptance of autism within society.

  2. Improving access to education for autistic children and young people and supporting positive transitions into adulthood.

  3. Supporting more autistic people into employment.

  4. Tackling health and care inequalities for autistic people.

  5. Building appropriate support in the community and supporting people in inpatient care.

  6. Improving support within the criminal and youth justice systems.

Is this the first autism strategy to include children?

Previous strategies have focused on autistic adults. The National Autistic Society successfully campaigned for this strategy to include children and young people and there are many new commitments as a result, including more training for teachers, anti-bullying programmes for schools and ensuring autistic young people can source supported internships and apprenticeships.

Improvements to the special education needs and disabilities (SEND) system for autistic children, including earlier identification of children’s needs, will be included in the forthcoming SEND review.

Good practice in autism support will be shared amongst schools, with a focus on mainstream education to improve inclusivity. Mental health support teams will be established and training for designated senior mental health leads in schools set up in the next academic year, to offer additional support as autistic pupils are more likely than their peers to experience poor mental health.

What might this mean for local service provision and the local council?

As the strategy does not specify how local services should be provided this will be based on needs of the local population and differing geographical requirements. It will be the responsibility of local systems and leaders to review existing services, and develop and co-produce future provision with service user engagement.

This inequality of access will be an important area of focus post strategy implementation, and NHS England will be trialling an annual primary care health check for autistic adults in the North East, which aims to identify specific health needs more promptly as part of the strategy. General practices will also be participating in a randomised trial, planning to recruit 200 autistic adults who have not accessed a recent NHS health check, which will be evaluated by Newcastle University.

A bespoke health checklist has been created and will be piloted in the trial. This incorporates a pre-appointment questionnaire regarding the person with autisms sensory and communication needs, reasonable adjustments required and their overall health and wellbeing.

The NHS Long Term Plan (2019) incorporated introduction of a “digital flag” in patient records by 2023/24, to ensure staff awareness, enabling reasonable adjustments to be made and piloting the introduction of a specific health check for people with autism. This will be deployed to 12 early adopter sites this year.

Many practices have established autism friendly policies. The RCGP Autism Patient Charter, produced in collaboration with the Autism Alliance, provides a framework for making GP surgeries more “autism-friendly”. Attending awareness training, having autism champions, adjusting physical environments, and tailoring information and advice are ways of demonstrating how practices support person-centred care promoting dignity, privacy, and human rights.

Many councils are engaged in promotion of and participation and engagement of autistic people in local communities. The autism strategy is underpinned by legally binding guidance to councils. Each council and NHS body needs to consider the strategy and how it can enhance local service provision.

The Government has commissioned Skills for Care, the National Development Team for Inclusion and the National Autistic Society to produce a guide to help commissioners to identify local demand and develop appropriate services and support for autistic people, which is also published alongside this strategy.

Impact of the Covid-19 pandemic

report by the Royal College of Paediatrics and Child Health earlier in 2021 revealed a “dramatic increase” in mental health referrals during the Covid-19 pandemic from children with Special educational needs and disabilities (SEND), such as autism.

The strategy considers the impact of the Covid-19 pandemic on autistic people and their families’ which has been profound for many.

In summer 2020, the Policy Innovation and Evaluation Research Unit (London School of Economics) undertook research to improve understanding of autistic people’s experiences during the pandemic and the report from this rapid research has been published alongside the strategy.

The 2021/22 funding commitments

  • Investing £10.5 million, establishing new ways to reduce diagnosis waiting times for children and young people, and addressing backlogs in diagnosis worsened by the pandemic.

  • Investing £2.5 million into improving the quality of adult diagnostic and post-diagnostic pathways, and diagnosis waiting times.

  • Increasing public understanding of autism with a nationwide, long-term scheme.

  • Providing £18.5 million to prevent autistic people from going downhill into mental health crisis.

  • Provision of £21 million for local authorities to enable those in mental health hospitals back into the community.

  • Improving awareness by training education professionals, job centre staff and frontline staff in the justice system.

Although the strategy spans five years, the commitments currently take us up to 2022. This is because there is a Spending Review scheduled for this autumn so further details are anticipated.

Timeline

In some areas, work will only begin after the first year (2021 to 2022) and there will need to be additional actions in subsequent years to realise the strategies vision. Some work is in initial stages or ongoing so further plans should be informed by outcomes or progress.

This includes the National Autistic Society’s research on fostering a bespoke Improving Access to Psychological Therapies (IAPT) model and the development of Oliver McGowan Mandatory Training for health. Once developed, this can be modified for other public servants, such as police or housing officers.

In the first year in the first year, key commitments will be to:

  • develop and test an autism public understanding and acceptance initiative, working with autistic people and their families, and the voluntary sector

  • continue to promote our disability equality training package for transport operators

  • resume the “it’s everyone’s journey” campaign to create a more inclusive and supportive public transport environment for disabled people.

Measures of success for each of the priority areas in the strategy will ensure monitoring of progress in year one and beyond.