Improving access to social care for adults with autism
When I get to see someone ... I don't always understand what they are asking me. I don't give complete answers to their questions and they don't press for additional information. I get upset and often cry, then I feel stupid and they think I'm overemotional or exaggerating my symptoms.Adult with autism (7)
Offering an assessment to someone who has, or may have, autism is a proactive duty for local authorities/trusts. In the past, many adults with autism, particularly those with Asperger's Syndrome or high-functioning autism, did not have assessments (26), and often those assessments that were carried out were in areas offering limited training in how to assess people with autism (27).
Assessing the social care needs of someone with autism should be done by a person with sufficient training and experience, and the forms that they use need to be sufficiently well constructed to capture the sometimes subtle needs that people with autism can have.
People with autism can find assessments perplexing. While this in part relates to the nature of autism, many carers we spoke to also found assessment processes confusing (50), so the issue is one that services should address.
Assessing someone with autism can be difficult, because people with autism:
- can lack self-awareness, the ability to express their needs and the knowledge of what constitutes a 'normal' alternative to their own lives
- may not want to engage with an assessment, or understand its purpose and link to getting services
- may have needs unrelated to their level of intellect, or masked by fluent language skills
- may not understand the questions, because they are asked ambiguously or unclearly - the question 'Can you cook by yourself?' may be answered 'Yes', even if the person is prompted at every stage of the cooking process
- may find the concept on which Fair Access to Care Services (FACS)* eligibility decisions are made, namely what would happen if needs were not met (9), overly abstract
- have often been let down by services in the past
- may have spent a great deal of time and effort developing ways to cloak their difficulties
- have family members/carers who mediate the outside world and compensate for someone's difficulties
- may come from cultures in which people are reluctant to acknowledge developmental disabilities, particularly when there is a strong genetic link. Some cultural differences will also cloak some difficulties, for example by being less reliant on the use of body language.
Preparing in advance and flexibility towards the person with autism may help the assessment process capture the right information. If you are conducting an assessment with someone with autism (28):
- be clear about your role right from the start
- consider sending a photograph of yourself in advance
- accept that you may need more than one or two meetings; people with autism can often only manage short conversations. This can be difficult given performance targets, but it ought to be a reasonable adjustment that you can make
- be flexible about how information is recorded; use formats that the person with autism can understand
- find out what would help the person feel in control of the meeting
- where appropriate, find out from the person's family or carers how they best communicate
- read about the person on their file, without fixing your views on the basis of what you learn there
- focus on the person's strengths and achievements.
You might also want to ask yourself (28):
- Does the person have special interests I could use to foster a good relationship?
- Does the person have sensory sensitivities; should I, for example, not wear perfume or after-shave?
- Are there things that might trigger anxiety for the person?
- Do I have to do the assessment face to face, or could it be done by email, for example? Can I send the assessment questions in advance so that the person can prepare their responses?
- Does the person need extra time to answer questions? Have I been asking them questions while asking them to read something or fill out a form?
- Does the person want a friend, family member or advocate with them?
- Is there a time of day that would suit the person well?
- Would the person prefer to be assessed while walking, for example, so that eye contact need not be made so often?
While some of these examples are of specific relevance to people with autism, others are simply good practice in any social work or social care assessment.
There are also a number of issues often connected to autism, which an assessor should consider (28):
- sensory issues, both in the room at the time, but also as a factor in determining need
- other specific learning difficulties or conditions, such as dyslexia or attention deficit hyperactivity disorder (ADHD)
- sleep issues - many people with autism have disrupted sleep patterns, which can be difficult for them and their carers
- dietary restrictions
- stresses faced by the carer; a separate carer's assessment should be offered - see the Carers section. The needs of siblings should be considered.
Consider risk factors that may arise from people's obsessions, dietary problems, social isolation, self-neglect, running/absconding, mental health problems, inappropriate sexual behaviour, self-harm and other factors. Consider too if the person with autism is also a parent or carer, and if so, how their autism affects how they care for the other person.
It is important to consider the impact of autism when assessing under the Mental Capacity Act 2005 or the Mental Health Act 2007. For example, someone with autism may have good theoretical knowledge about an issue and appear to have capacity, but in fact are not able to retain or weigh up the information.
For more tips on communicating generally with people with autism, see the Making services accessible and acceptable - Frontline staff subsection.
* In Northern Ireland, the DHSSPS 'Circular HSC (ECCU) 1/2010: Care management, provision of care and charging guidance' applies (not FACS).
- Saeki, M. and Powell, A. (2008) Social care: Assessment of need for adults with an autism spectrum disorder, Birmingham and London: British Association of Social Workers and National Autistic Society.
- Social Care Institute for Excellence (2010) 'Fair access to care services', SCIE Guide 33, London: Social Care Institute for Excellence.