Improving access to social care for adults with autism
Diagnosis ... that's the very, very beginning … you're not always given a lot of information about what that diagnosis actually means. (7)
Diagnosing autism is a task for medical professionals, and Fulfilling and Rewarding Lives (10) and the'Autism strategic action plan for Northern Ireland' (24) both plan improvements to medical diagnostic pathways, for adults and children. A well-informed social care workforce has a vital role to play, however, in identifying people who might have autism, but are as yet undiagnosed. Social care workers are also important sources of support at the point of diagnosis, and in the weeks and months that follow.
Getting a diagnosis of autism, especially as an adult, can be hard: four out of five people in our research found obtaining a diagnosis in adulthood either difficult or not possible (7). For some, a diagnosis of autism can lead to discrimination (41), but there are some key benefits:
- A diagnosis helps explain, to the person, their family and friends, and the wider public, what had previously been unknown or misunderstood.
- It can help shape an improved support package, as long as this is not done in a mechanistic, 'someone has this, they get this' (7) way.
- It avoids the problems of misdiagnosis, as faced by people with autism wrongly thought to have a mental health problem, for example.
- It can assist with accessing services and benefits, such as a Disabled Students' Allowance (25).
The social care workforce therefore needs to know how to go about making referrals for a diagnosis, and this must form part of the awareness raising and training they receive. This requires good links between local health and social care bodies, so timely, appropriate referrals can be made, which waste the time of neither people with autism nor professionals.
There are several important things to consider at the point of diagnosis, and in the period that follows:
- A diagnosis, Fulfilling and Rewarding Livesmakes clear, is a reason to assess people's social care needs, rather than exclude them from assessment (10, 11), as has happened in the past for people with Asperger's Syndrome or high-functioning autism.
- Diagnoses can indicate what a person might benefit from, but should not be any more than a guide. The person remains an individual, for whom their autism is but one of the facets that makes them who they are.
- Good links between health and social care are indispensable at the point when someone receives a diagnosis. We found that 77 per cent of people felt poorly served by support services at the point of diagnosis (7).
- Social workers are trained to help support people in periods of change and crisis, and have a key role to play in making sure that people get better support when diagnosed.
- Information-sharing between NHS-based diagnostic services, and local authority/trust, private or voluntary social care providers, needs to be swift and appropriate.
- People need good, prompt information about autism, and about where to get support. Who provides what information will vary from area to area, but different organisations must communicate with each other.
Of course, people do not need a diagnosis of autism to be assessed for social care services. Conversely, although people should be assessed if they do have a diagnosis, having autism doesn't mean that they will then be eligible for support.
Making sure that, following diagnosis, the assessment for and provision of social care services is done in ways that work for people with autism, is the subject of the next section.