Improving access to social care for adults with autism
The service landscape
Joint working is important, because for people with autism, social care is just one part of a wider service landscape.
They also need health services, housing, jobs and benefits, as well as access to any mainstream service or support they should opt to use.
And while social care can be hard to access, so too can these other service areas (7). This can mean that some people with autism, worn out by the struggle, access nothing, and so miss out on the chances of cross-referral to other services they need. They risk, therefore, living lives that are really constrained, because they are denied access to work, vital health services, social contact and a decent place to live. The difficulties faced by people with autism in getting social care need to be considered alongside the problems experienced in accessing work, healthcare, education and money.
The complexity and inaccessibility of the benefits system was a major theme in the research we carried out (7). People with autism can be anxious about applying for, and perhaps being refused, benefits such as Disability Living Allowance, which can fail properly to consider issues facing people with autism. The forms involved can be forbiddingly complicated, and the office spaces that house benefits staff can be bright and noisy (23). Not applying, however, can lead to financial disadvantage.
It can also be hard for people with autism to access healthcare, for a number of reasons:
- bright, noisy, loud healthcare settings
- lack of awareness among health professionals
- diagnostic overshadowing - everything being put down to a person's autism
- difficulties people with autism have in communicating - for example explaining where the pain is
- poor awareness of autism in mental health services, which tend to have a recovery focus, which is unhelpful to people with autism
- some health interventions require touch, which can distress some people with autism
- hypo-sensitivities, which can make it difficult to identify if someone is in pain.
Employment, for those with autism as for most people, can be important in developing self-esteem and ending benefits dependency. Some key points are worth considering:
- With the right support, people with autism can make excellent employees.
- Many people with autism who are in work are employed part time, and in roles that do not reflect their qualifications (61).
- Often this is because many people with autism find interviews difficult: the concept of selling oneself, or putting a positive gloss on one's experiences can be wholly alien for some people with autism.
- Reasonable adjustments can be made: work trials can give a more accurate picture of someone's skills than interviews, for example.
- Job descriptions needs to be looked at. Many jobs, for instance, call for 'good communication skills', which can be a barrier to people with autism, when they are not actually that important.
- Many people experience difficulties with the social aspects of employment, such as deciding what information to share with colleagues, or how to report difficulties such as harassment.
Getting the right housing, and the right support that comes with it, can also be key for many people with autism. In the subsection entitled Making services accessible and acceptable - commissioners, we described some of the main housing needs of people with autism. However, because many people with autism are not considered eligible for social care support, they often live with families, or in general needs public housing. Mainstream housing providers should therefore develop their own awareness of and competence in autism, to ensure, for example, that people with autism can access advice on paying the rent or dealing with neighbours.
In the education field, universities and colleges are making some progress in catering for people with autism. The Disabled Students' Allowance, for instance, can be used to fund social, as well as academic support. Many universities and colleges remain a challenge for people with autism, because of the novelty and variety of the environment (25), but quiet periods in the Freshers' Fair and web-based courses are examples of reasonable adjustments that can be made. Others include:
- pastoral support from trained staff
- autism awareness training for staff
- information provided in clear and literal language, including in exams
- providing extra time for individual pieces of work, and for courses as a whole
- support around organising time
- extra support around exam time and other periods when routines change
- making specific accommodation arrangements, taking into account sensory sensitivities (52).
As social care opens itself up to people with high-functioning autism and Asperger's Syndrome more, links with the higher education sector are likely to grow.