‘Think autism’
‘Think autism’[19] sets out to update the government’s strategy for improving outcomes for adults with autism in England, first set out in ‘Fulfilling and rewarding lives’ [18] which called for a societal culture shift, so that the equality and human rights of autistic people are respected. To help improve the quality of life for people with autism, ‘Fulfilling and rewarding lives’ set out the need for better:
- autism awareness training
- access to a diagnosis
- assessments of people with autism
- service and support
- local leadership and planning – including a lead commissioner for autism.
The strategy also sets out the costs for people with autism of not changing things:
- continued poor physical and mental health
- continued involvement in crime and substance misuse
- continued benefits dependency
- continued economic and emotional costs for their carers and families.
The strategy provides a clear narrative:
- to raise awareness among professionals
- to train those who play key roles in the lives of people with autism
- to make sure diagnostic services are available
- to ensure transitions into adult services are managed successfully
- to ensure that good planning and leadership are in place so that quality local services can be provided.
‘Think autism’ retains these commitments and builds on them, setting out its key aims to:
- increase awareness and understanding of autism
- develop clear, consistent pathways for the diagnosis of autism
- improve access for adults with autism to services and support
- help adults with autism into work
- enable local partners to develop relevant services.
‘Think autism’ outlines 15 ‘priority challenges’ established through a consultation with autistic people, families, carers and professionals. Outlined in the next section, these are divided into three parts related to:
- being recognised as an equal within local communities
- getting the right support across the lifespan
- developing skills, independence and working life.
‘Think autism’ is backed by statutory guidance.[20] This incorporates changes which draw on the duties written into the Care Act 2014 as well as expanding on previous guidance from 2010.[21] It expands on the responsibilities of local authorities and the NHS, for example, giving guidance on the different levels of training people might need to understand autism. It provides guidance on five further areas where improvements should be made, setting out some examples of successful practice:
- preventative support and safeguarding
- reasonable adjustments and equality
- supporting people with autism and complex needs
- employment
- criminal justice.
The strategy and guidance call on public bodies to meet their existing duties to people with autism. All major pieces of social care, health and equality legislation apply to people with autism, but have not been used with sufficient consistency to support them in practice. The strategy and guidance make it clear that this is not acceptable and call for a better use of existing law to support people with autism.
Importantly, the strategy and guidance state that a diagnosis of any autistic spectrum condition, including Asperger syndrome or high-functioning autism, is a reason to assess somebody for services.[20] While this does not guarantee services will be provided, the move to ensure assessment is carried out appropriately and proportionately [22] and the Care Act’s focus on outcomes-based eligibility should help to ensure that assessment looks at the person rather than their diagnosis.
As well as aiming to improve public services for people with autism, the documents call for all mainstream services – such as transport, leisure, employment and the police – to get better at adjusting to, and meeting the needs of, people with autism. The statutory guidance [20] also states that local authorities will need to keep and provide data about autism in their area, including:
- the numbers of autistic people known
- the range of need for support to live independently
- the age profile of people with autism.
The guidance allows for local discretion in how the strategy is implemented, however health and wellbeing boards, formed through the Health and Social Care Act 2012, are expected to play a part in planning local services. Concerns remain that a lack of funds and central direction may hamper some of the key aims such training and diagnosis.[4,14] Nonetheless, local authorities, and most NHS bodies, will need to abide by the guidance.
While progress has been made since the Autism Act 2009 there is still much to be done to show as a society that autistic people have the same rights to life and independence as other people.[23,24] Where guidance is followed, this can lead to real improvements in the day-to-day lives of autistic people, as well as carers and professionals.[16]