Improving access to social care for adults with autism
How to overcome the barriers on the front line
Person-centred planning is a process for continual listening and learning, focussing on what is important to someone now and in the future, and acting upon this in alliance with their family and friends. (36)
For personalisation to work for people with autism, those supporting the person need to know their needs, wishes, choices and idiosyncrasies in great detail (20). There is no one right way, because everyone is different, but staff who stay around long enough for rapport and trust to develop (20), and who foster an overall culture of innovation, will help personalisation take root (10).
An important first step in personalising the support a person with autism receives is to set out with them what their aspirations and needs are. Skilled input is needed to make sure that the planning of personalised care works well (20). While there has been little research into what constitutes a good person-centred facilitator for people with autism, a practice consensus seems to be emerging that they need to (60):
- be a good communicator
- avoid assumptions
- represent the views of the person with autism, not their own
- bring everyone into discussion, and share power
- make connections
- be willing to challenge the services for which they work
- have commitment and motivation, and believe that person-centred approaches work.
A meeting of lots of people might not be the best environment for the person with autism to share their thoughts. Supporters need to consider alternatives such as the person submitting their views in writing, by video or in a smaller pre-meeting. Any meetings need to be in quiet, calm environments, with plenty of breaks, and set up to maximise the inclusion and contribution of the person with autism. So, for example, notes can be taken on the favourite-coloured paper of the person concerned, or kept in a place of the person's choosing. The key will be to develop a trusting relationship with the person with autism and their family, based on an in-depth knowledge of their strengths, wishes and needs (54), and how their autism affects them as an individual (28). This may take longer than with other people with disabilities, but for many people with autism this time will be needed for the process to work well.
Things that are worth considering in trying to make personalisation work for people with autism include:
- a positive attitude among professionals and family (6), which focuses on a person's skills and strengths
- the championing of person-centred approaches by committed local professionals
- the individuality of the SPELL (Structure, Positive approaches and expectations, Empathy, Low-arousal settings and Links) framework for working with people with autism, as it focuses on understanding a person and their strengths (31)
- person-centred active support (61) and positive approaches to behavioural support (31), which can help people accept changes and new activities, even when this needs balancing against the need for consistent routine
- the use of simple planning tools such as One-Page Profiles and Essential Lifestyle Plans, which can work well for people with autism (56)
- tools that support person-centred approaches in plain and clear language.
For services to be acceptable, personal assistants, where used, will need to be well trained, and to stay well trained. Pools of support workers may work better than just one (56), as working one to one with a person with autism can be demanding for both parties over time.
- National Autistic Society and Helen Sanderson Associates (2009) Person centred thinking for people who have autism, London: National Autistic Society and Helen Sanderson Associates.