The pressures for carers of people 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, can be considerable. Such pressures are typically lifelong, and can persist whether or not the autistic person lives with their carer. Some autistic adults will not see that they need support, even if their families are under strain.[10] Sometimes support services designed for a carer have been blocked by the person with autism, for example by not letting people into the house. Carers’ benefits can feel like scant recompense,[13] especially in those families where there is more than one person with autism.

These pressures have often been coupled with the pressure of battling with organisations for support.[13] This battle applies both to services for the autistic person and perhaps even more so to services for carers themselves.[33] The job of caring for someone with autism can act as a powerful barrier to life and employment options, and is a situation that leads some carers to the edge of mental and physical wellbeing, and some into ill-health.[13, 89] It is important to remember that autism seems to have a genetic component, so carers may be looking after more than one person with autism or may be autistic themselves.

Of the 124 carers who responded to our survey, only three per cent found gaining access to carers’ services easy. Many had not even tried, feeling the struggle was not worth the likely benefit. Carers reserved their energies for seeking services for the person with autism they support, as this was challenge enough. Carers found access to social activities, diagnosis, education, housing, employment and social services hard to come by for the autistic person.[13]

Accessing these services often requires doggedness. When services were accessed, carers often felt that the people employed in them did not know enough about autism.[35] Many carers 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.[13, 42] Several studies have shown how parents of autistic people support independent living for their children, and that their support is welcomed by those children.[62, 75, 89] The development of personalised services makes some carers fear they will be marginalised further or burdened with extra tasks and responsibilities.