Improving access to social care for adults with autism

The situation for carers

Over the years you just get drained with the constant rejection.

Mother of someone with autism (7)

Many carers of people with autism face significant daily challenges in supporting the person with autism. The pressures of living with and supporting people who see the world very differently, who can appear unresponsive or who can be destructive and violent at times, can be considerable. Where such pressures exist, they are typically lifelong, and can persist whether or not the person with autism lives with their carer or not. Some people with autism will not see that they need support, even if their families are under strain, and that lack of awareness of the pressures their carers may be under can itself add to those pressures (6). Some people with autism can block support services designed for their carer, for example by not letting people into the house. Carers' benefits sometimes feel like scant recompense (7), especially in those families where there is more than one person with autism.

What our research into accessing services for people with autism revealed is that these pressures are too often coupled for carers with the pressure of battling with organisations for what is needed or wanted (7). This battle applies to services for the person with autism, but perhaps even more so to services for carers themselves (20). The job of caring for someone with autism can act as a powerful barrier to life and employment options for carers (62). It is a situation that leads some carers to the edge of mental wellbeing , and some into mental ill-health.

Of carers we spoke to, only three per cent found gaining access to carers' services easy (7). Many had not even tried, citing a sense of it not being worth having yet more struggles with authorities, for what was perceived as little likely benefit (7). Many carers reserved their energies for seeking services for the person with autism they support, as this, for many, was challenge enough. Carers we spoke to found access to social activities, diagnosis, education, housing, employment and social services hard to come by for the person with autism for whom they care (7).

Accessing these services often requires real doggedness by carers and family members. When services are accessed, carers often feel that the people employed in them do not know enough about autism (23). Many carers, parents especially, acknowledge that they feel concern as their offspring take new steps towards an independent lifestyle, but resent what they perceive to be the view of some professionals, that they are trying to hold back their family members as they move to independence (28). The development of personalised services makes some carers fear they will be marginalised further (7), or burdened with extra tasks and responsibilities.

Given its genetic element, it is important to remember at all times that carers may also have autism.