Assessment for people 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.

(Autistic person)[13]

Offering an assessment to someone who has autism is a proactive duty for local authorities [20] and health and social care trusts.[31] In the past, many adults with autism, particularly those with Asperger syndrome or high-functioning autism, did not have assessments,[37] and often those assessments that were carried out were in areas with limited training in how to assess people with autism.[38]

The new guidance for the Care Act 2014 [15] stresses the duty to have suitably-trained people conducting assessments. Because many people with autism might have other conditions, as well as physical health issues, assessments must ensure that any underlying support needs related to a person’s autism are considered.[39] This is part of the Care Act 2014’s priority to ensure that people’s wellbeing is reflected in the assessment.[15]

Barriers

People with autism can find assessments perplexing. While this in part relates to the nature of autism, many carers also report finding assessment processes confusing, so the issue is one that services should address.[40] The Care Act 2014 states that in England people have the right to independent advocacy if they need someone to help them have their say about their care needs, though this role might be carried out by a family member or friend. The Act also states that assessments need to be carried out in a way that is appropriate for the person being assessed.[15] At this time, there is no statutory requirement in place in Northern Ireland, however access to advocacy is recognised as good practice.

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 connection to receiving 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 has to be prompted at every stage of the cooking process
• may not like the attention, or the focus on their need may cause them anxiety, so their answers may reflect their desire to finish quickly
• may have been let down by services in the past
• may have spent a great deal of time and effort developing ways to cloak their difficulties
• may have family members/carers who mediate the outside world and compensate for their difficulties
• may come from cultures in which people are reluctant to acknowledge developmental disabilities.

Successful assessment

Preparing in advance and flexibility towards the person with autism may help the assessment capture the right information, and the assessment must be proportionate to the complex nature of autism.[15] If you are conducting an assessment with someone with autism:

• be clear about your role 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
• 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
• ensure that you are punctual as lateness can cause anxiety
• focus on the person’s strengths and achievements.[41]

You might also want to ask yourself:[42]

• 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 aftershave?
• 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 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:[42]

• 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
• 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 in this guide. In order to lessen anxiety for the carer, this could be offered or arranged at the same time
• the needs of siblings and other family members.

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 whether the person with autism is also a parent or carer and, if so, how their autism affects how they care for the other person.

The impact of autism should be considered 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.

The Care Act 2014 requires local authorities in England to consider the strengths and capabilities of people being assessed. This approach emphasises that through building on individuals’ strengths – personal, community, and in social networks – assessments are more likely to support the outcomes that those using services want.[41] There is more about the strengths-based approach in the section on ‘Personalising services’.

For more tips on communicating generally with people with autism, see the ‘Frontline staff’ subsection.

Further reading

• ‘Social care: assessment of need for adults with an autism spectrum disorder’(2008), National Autistic Society.
• Care Act 2014(2014), Social Care Institute for Excellence.