Improving access to social care for adults with autism
If I were in a wheelchair no one would be asking me to take the stairs!Adult with autism (7)
In our Introduction, we looked at some of the general barriers to accessing services experienced by people with autism. Here, we explore in more detail some of the challenges people with autism face when trying to access social care.
Contacting social care services, particularly for the first time, can be problematic. When offering services, information or support to people with autism, bear in mind that:
- form-filling and phone calls can be perplexing and a significant obstacle to services
- face-to-face meetings may be disconcerting, as they may involve travel to unfamiliar places to meet unfamiliar people
- some people with autism will feel overloaded with sensory impacts by the time they arrive, and will struggle to focus on the task in hand
- services should therefore be flexible, and support people to choose whatever works for them
- people might miss appointments, and should be reached out to if they do, not denied a service (7)
- services should continuously examine their processes and language, to identify what might form a barrier to people with autism
- people may need to build up the amount of time that they can spend with a new person or build up their trust
- people may need support to identify and ask for reasonable adjustments to services
- much of what makes people with autism anxious and disconcerted about contact with bureaucracy – unhelpful telephone operators, long periods on hold, information not being shared clearly – can also annoy the general population. Getting it right for people with autism need not be an extra burden for organisations; it is something that they ought to be doing anyway.
Our research showed that many people with autism have little contact with social care, living in their own or their families' properties, and seeking assistance from friends and family, rather than professionals (7). This may reflect people who are living independent lives, and who do not need whatever services have to offer. Many, though, will be people trying to cope alone, or relying wholly on family members, because services are either inaccessible or they see them as inadequate at meeting their needs.
This can be exacerbated by the fear some people with autism have of other people's perceptions, of not being accepted, or not being believed. Some people we spoke to said that people did not think that they deserved help, because they appeared so normal on the surface (7). This links to the frustration of people with autism being expected to do things that are simply beyond them because there is no obvious reason why they can't. Other people are concerned about the stigma involved in having a label or receiving social care services; this can be heightened for people who put a lot of effort into appearing neurotypical or who have been bullied extensively.
We came across people for whom services were only accessible because a single individual was helpful. The roles of these helpful people varied – a day centre worker, a GP, a social worker – but they often assisted despite the systems in which they operated, rather than being supported by those systems (7). Turning individual islands of accessibility into something more systematic would help make things better for people with autism.
Too many services, when they are offered, are not suitable. Designed either for people with learning disabilities or for people with mental health problems, they lack the specialist knowledge and experience to effectively support people with autism. Learning disability day centres, for instance, will sometimes change activities for the summer months, which can cause people with autism anxiety (20), and in general they rely on a lot of group activities, which may not work for some people with autism.
People with autism who display behaviour that challenges services, such as self-injury, aggression, damage to property or substance misuse, can find suitable services particularly difficult to access (7). Often, people are placed in expensive residential or hospital provision, where they can become detached from their family and community.