The service landscape in autism

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 mainstream services or support.

While social care can be hard to access, so too can these other service areas.[13] This can mean that some people with autism access nothing, and so miss out on the chances of cross-referral to other services. 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 complexity and inaccessibility of the benefits system was a major theme in our research.[13] People with autism can be anxious about applying for, and perhaps being refused, benefits. The forms involved can be forbiddingly complicated, and the office spaces that house benefits staff can be bright and noisy.[13, 35] Not applying, however, can lead to financial disadvantage.

Healthcare

It can also be hard for people with autism to access healthcare, for a number of reasons:

• bright, noisy settings
• lack of awareness among health professionals
• diagnostic overshadowing – everything being put down to a person’s autism
• difficulties in communicating – for example, explaining where the pain is and what it feels like [50]
• poor awareness of autism in mental health services, which tend to have a recovery focus
• 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

Employment, for those with autism, as for most people, can be important in developing self-esteem and promoting independence. In an English study following the implementation of the Adult Autism Strategy 2009 and the Equality Act 2010, the researchers found that barriers to employment still included a lack of reasonable adjustments and a lack of understanding about autism from employers.[55] Some key points are worth considering.

• With the right support, autistic people 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.[55] This may partly be a reflection of the need for work which does not cause overload.
• People with autism find interviews difficult: the concept of selling oneself, or putting a positive gloss on one’s experiences can be wholly alien to them.
• Reasonable adjustments should be made in keeping with the Equality Act 2010 (or equivalent legislation): work trials can give a more accurate picture of someone’s skills than interviews, for example.
• Job descriptions needs to be considered. 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 autistic 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.
• Altering some of the difficulties that autistic people might experience (such as harsh lighting and noisy environments) would benefit non-autistic workers as well.[55]

Housing

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 ‘Commissioners’, we described some of the main housing needs of people with autism. However, because many such people 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.

Education

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,[2, 56] but quiet periods in events such as the fresher’s fair and web-based courses are examples of reasonable adjustments that can be made, and there are some colleges with a focus on providing a balanced environment for people with severe autism and learning difficulties. Other potential adjustments include:

• pastoral support from trained staff
• autism awareness training
• information provided in clear and literal language, including in exams
• extra time for individual pieces of work, and for courses as a whole
• support around organising time
• scheduling supervision/classes at regular times each week
• extra support around exam time and other periods when routines change
• working in small groups where possible [56]
• making specific accommodation arrangements, taking into account sensory sensitivities.

As social care opens itself up to people with high-functioning autism and Asperger syndrome, links with the higher education sector are likely to grow as support improves.