Supporting adults with high-functioning autism through advice, information, and mentoring: a little goes a long way
People with autism or Asperger’s who are deemed to ‘high functioning’ can often fall through the gaps of service provision; they may not be eligible for specialist autism services, while mainstream services may not recognise or cater for their specific needs. As a result, they can be at risk of poor health and wellbeing, unemployment or underemployment, social isolation, and lacking control in their lives.
The Leeds Autism AIM service is a free service based in Leeds city centre that provides ongoing support to adults with autism with little or no funded support. Leeds Autism AIM offers three main services – advocacy, information, and mentoring – and all are specifically tailored to the needs of adults with autism.
Research suggests that providing this type of ‘low-level’ support to adults with high functioning autism with can help them with work, socialising and relationships, decision making and problem solving, and with their physical and mental health. The evidence base is limited, however. As part of an evaluation of the Leeds Autism AIM service, we spoke with people who had used the service to find out what impact it was having on their lives.
Leeds Autism AIM was overwhelmingly described in positive terms and thought to benefit adults with autism, their families, and other professionals and services in the city. The service was thought to improve:
- Employability, education and volunteering – Leeds Autism AIM supported with CV writing and job applications. It provided opportunities to gain experience through volunteering. People who used the service also had access to information about further education and training.
- Access to information and support – The service provided users with improved access to information and appropriate support about housing, health and wellbeing, parental rights, debt management, benefits, and employment. This empowered adults with autism and their family to take appropriate action to address problems themselves.
- Reduced social isolation – Leeds Autism AIM provided an opportunity for people to socialise and make friends. The drop-in hubs provided a place for people to meet, whilst mentoring allowed for more in-depth, one-to-one interaction.
- Health and wellbeing – The service positively affected people’s health and wellbeing, helping them feel less down and more confident. Most significantly, Leeds Autism AIM had prevented users from attempting suicide or harming themselves and others by helping them express their feelings in a safe environment with people who understood what they were going through.
- Managing day-to-day – Leeds Autism AIM was thought to help people lead less chaotic lives by providing advice and support to deal with things like paying bills, travelling around the city, and being in social situations. The service also helped people manage their autism symptoms better, preventing or lessening some of the negative consequences they would have previously faced.
The service’s apparent success was based on being delivered in an ‘autism friendly’ environment where adults with high functioning autism are empowered to take control of their own support. The long-term effect of the Leeds Autism AIM service on the lives of people who used the service is not clear, but we can say that the service did help people feel more supported and to not fall through the gaps of support structures.
Given that around 700,000 people in the UK are on the autistic spectrum, the need for appropriate support is significant. Without it, the burden generally falls to families (where available), which can have negative consequences for those individuals. The type of low-level interventions provided by Leeds Autism AIM seems to fit with current government policy rhetoric towards preventative services based around interpersonal support networks and advice and information for all adults with autism, regardless of whether they are eligible for social care. However, given the ongoing austerity politics in the UK and the linked reduction in capacity across the broader statutory and voluntary health and social care sectors, the extent to which the Leeds Autism AIM service is able to fulfil its function to effectively signpost users to information and other services is, at best, unknown, and, at worst, diminished.
You can read Dr Southby’s full research paper, published in the Journal of Autism and Developmental Disorders, here.