Accessibility and acceptability
If I were in a wheelchair no one would be asking me to take the stairs!
(Adult with autism)[13]
Here, we explore in detail some of the challenges people with autism face when trying to access social care.
Barriers
Bureaucracy and systems
Contacting social care services, particularly for the first time, can be problematic for autistic people. When offering services, information or support, it is important to 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 autistic people 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, not denied a service [13]
- services should continuously examine their processes and language, to identify how these might form a barrier
- 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 – such as unhelpful telephone operators, long periods on hold, or 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 to improve their services.
External perceptions
Some autistic people fear other people’s perceptions, and feel they are not accepted, or believed when they ask for help.[13] It can be frustrating for autistic people and their families that they might be expected to do things that are simply beyond them, because there is no visible reason why they can’t. Other people may stay away from services because of concerns about the stigma involved in having a label or receiving services; this can be heightened for people who put a lot of effort into appearing neurotypical or who have been bullied extensively.
Islands of accessibility
In the research study which underpins this guide, we came across many people for whom services were only accessible because a single individual undertook a key role in ensuring this would happen. 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.[13] Turning individual islands of accessibility into something more systematic would help make things better for people with autism.
Suitability
Too many services, when they are offered, are not suitable for individuals on the autistic spectrum. Designed either for people with learning disabilities or for people with mental health problems, they lack the specialist knowledge and experience to offer effective support. Many places, for example, rely on a lot of group activities, which may not work for autistic people.
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,[13] and care must be taken to ensure that they are provided with appropriate services within the community wherever possible.[20] Too often, people are placed in expensive residential or hospital provision, or spend long periods in assessment and treatment units, where they can become detached from their family and community.[43]
