Support for carers of people with autism
A carers’ assessment is the vital first step in a carer accessing the support they need, yet too few carers of people with autism have received one. Under the Care Act 2014, carers are given equal status in relation to eligibility for assessment of support needs. A diagnosis of any form of autism should act as a trigger to offer a carers’ assessment to all those supporting the diagnosed individual.
Carers’ assessments can be offered even if the person with autism has refused an assessment for themselves. If a carer refuses an assessment when offered, they are able to ask for this at a later date. This also applies if a diagnosis of autism has been received at an earlier date, and assessment found no eligibility for social care support. In Northern Ireland, carers who provide a substantial amount of care on a regular basis for someone with autism have the right to a needs assessment when requested. These rights and duties are set out in the Carers and Direct Payments Act (NI) 2002.
The concern that some parents and carers feel about their family members’ move towards independence can be lessened by the presence of supportive and skilled professionals, who must:
- listen, and take on board the experiences that family members have 
- recognise the incredibly in-depth, detailed knowledge that carers have and that this is not limited to parents – siblings and partners figure here as well [13, 75, 84]
- understand the love and sheer investment of emotion and time over many, many years that most carers bring to any discussion about the person with autism 
- empathise with the likelihood that carers may be drained from battles fought over the years, and may display a cynicism about the ability or willingness of professionals to help
- respect the different views an autistic person and their carer may have about the person’s needs, and make clear in assessments who is expressing what opinion
- recognise that carers may be particularly anxious about the future, when they are no longer able to oversee what is going on for their family member 
- plan early with families for what may happen, to help allay these concerns – this includes involving siblings fully in this planning. 
Some carers may need help in identifying all the support that they give, as it can be subtle and fluctuating. Carers sometimes live according to the person with autism’s needs, and prioritise these over their own. They may do a lot of things unconsciously in relation to mediating between the autistic person and the outside world, such as answering all telephone calls or arranging appointments.
The need for clear communication with autistic people is mirrored by the need to communicate clearly with carers, and to avoid professional jargon which can act as a barrier to collaborative working. This matters, because liaising with those closest to the autistic person can give professionals a much fuller picture of their support needs.
Carers and family members often become expert in the particular needs of the person they support. They can be hugely well informed about autism more generally, and many carers also become experts in how social care systems operate. This makes them ideal partners to work with services. Carers of people who have been recently diagnosed, however, may benefit from information and advice on autism.
Collective efforts by groups of parents can be a useful mechanism for achieving change. This may be by:
- advising local authorities/trusts over the provision of services
- setting up mutually supportive group meetings
- using the power of collective complaints to address poor access to services for autistic people and carers.
Some carers in our study had set up advice services themselves when they found these lacking in their local community. The renewed call in ‘Think autism’ for local autism partnership boards to include a full range of stakeholders provides a key opportunity for carers to have a voice in their community.
The 15 priority challenges identified in ‘Think autism’ through consultation with autistic people includes one specifically aimed at the families who do so much to support their loved ones with autism: ‘I want to know that my family can get help and support when they need it’.
Local authorities need to prioritise carers’ wellbeing, as their knowledge, support and hard work go a long way towards improving the lives of adults on the autistic spectrum. The Care Act 2014 aims to go some way to doing this, but it is too soon after its introduction to evaluate how successfully. The Carers Strategy for England, ‘Recognised, valued and supported’, emphasises the expertise that carers have, but stresses that they should be entitled to dignity, financial wellbeing and a life beyond caring. Other key aspects of this strategy include:
- better information on employment and benefits issues, and on the condition in question
- better services for the cared-for person
- less laborious assessment processes
- more, and more personalised, respite breaks
- more involvement of carers in service planning and delivery, and their input into joint strategic needs assessments (not available in Northern Ireland)
- services that do not call for help whenever there is a problem, but properly support a person, and allow carers time away from caring
- more flexible working for carers
- more training for carers.
Were all or most of these available to carers of people with autism, it would be reasonable to expect that the challenges of caring, and the attendant physical and mental health difficulties, may be lessened.