Key learning points:
- Many people with autism spectrum disorder (ASD) have social and communication difficulties that may make it more difficult to communicate and have their healthcare needs met
- Having an awareness of these needs can help primary care nurses to identify people with undiagnosed ASD
- It can also help primary care nurses to adapt their own interaction style to deliver person-centred and effective healthcare for people with ASD
ASD is a relatively common developmental condition, affecting around 1% of both adults and children.1 It is more common in males than females, although females with ASD may present differently from males and so may be more likely to have their condition overlooked or misdiagnosed.2 The new Diagnostic and Statistical Manual of Mental Disorders 5th edition (DSM-5) criteria, published in 2013,3 reflects changes in the understanding of the condition and outlines two main diagnostic criteria:
- Persistent deficits in social communication and social interaction across multiple contexts.
- Restricted, repetitive patterns of behaviour, interests or activities.
People with ASD may also have differences in the ways they experience sensory information, for example being sensitive to particular sounds, smells, tastes and touch. The new definition of ASD also now includes people who would previously have been given a diagnosis of Asperger’s syndrome. People with ASD present in a range of different ways and with different levels of intellectual functioning. ASD commonly occurs in people with an intellectual disability (ID),4 but can also occur in people with average or above-average intelligence. People may function independently, with their condition having relatively little impact on their lives, or be extremely debilitated and need high levels of support.
Identifying people with ASD in primary care
Recent health guidelines in both Scotland1 and England5,6 stress the importance of early identification of people who have ASD to ensure they receive targeted support, which helps improve their overall quality of life. It is recommended that staff conducting clinical assessments should look out for indicators of ASD in the way the person interacts socially, communicates and behaves, as well as responding to concerns that are raised by parents.
For young children, their limited interest in others and difficulties with non-verbal communication may be evident in behaviour such as not being tuned in or responsive to the social behaviours and cues of other people. This might include the facial expressions, expressions of emotions, gaze or pleasure of others. They may also lack interest in capturing or sharing the attention of others, for example by pointing at something they are interested in. This can manifest in older childhood and adolescence in problems with friendships, adhering to social norms and coping with change.
Difficulties in adulthood may be evident in problems getting or keeping a job, making and sustaining friendships and other close relationships and with staying in education. For people who have a more severe ASD, indicators may be that the person shows little reaction to other people or particular social situations and limited interest in interacting with others. They may also display stereotyped behaviour. While this broad presentation is relatively common in people with a severe intellectual impairment, those who also have ASD will display these characteristics in a more pronounced way.1
How the primary care nurse can help
The primary care nurse can help people with ASD at many stages of their healthcare journey. In terms of facilitating early diagnosis, an awareness of and attunement to behaviour or reported parental concerns that may indicate ASD can help the primary care nurse to identify children who may require further diagnostic assessment. Early identification of ASD can help improve the life chances of the young person.
Likewise, an awareness of how ASD may manifest in adulthood, and that it may present differently in males and females, may help those adults who have not received a diagnosis or have been misdiagnosed so that they can access appropriate diagnostic services and support. Difficulties experienced by some adults with undiagnosed ASD may only come to light because of a change in support systems or a life transition – eg moving away from home for the first time or the death of a spouse or parent.
The primary care nurse also has a clear role in terms facilitating access to, and use of, primary care services for people with ASD. While it is generally good practice to run appointments to time, provide clear information and communication and make things as predictable as possible, all of these factors are particularly important for people with ASD. Many people with ASD find transitions difficult and may need explicit help with how to move from one setting, procedure or healthcare process to the next. Similarly, a strong need for predictability and routine may mean that some people with ASD will find it particularly distressing if a planned appointment does not happen on time, is cancelled or changed at the last minute or is conducted by a different healthcare professional from the person who is familiar or expected.
It is important to remember that predictability must be considered from the perspective of the person with ASD. For example, while the primary care nurse may expect appointments to run a few minutes late on occasion, the person with ASD may expect to be seen exactly at the designated appointment time.
It is also important to be aware that the person may have particular sensory sensitivities and that, for example, certain sounds, smells, textures and types of touch may be aversive to them. Social and communication difficulties and problems with recognising and expressing emotions may mean that the person with ASD may appear impolite, evasive, abrupt or indifferent. Engaging in social chit-chat as a means of establishing rapport is also likely to be problematic for the person with ASD. Be aware that this is unlikely to reflect on how the person with ASD views you personally, but rather may stem from the characteristics of their condition.
Many people with ASD also have difficulty with understanding abstract concepts, language that is metaphorical, jokes and idioms. For example, asking a person with ASD if they have been ‘feeling a bit more blue or down recently’ or advising them to ’keep an eye out’ for particular symptoms may cause confusion. Asking direct questions that relate to things that can be seen, heard or directly experienced is likely to be more fruitful. For example, rather than asking ‘Did you feel anxious’ it may be better to ask ‘Were you sweating more than usual? Did your heart beat faster than usual?’
While adapting your communication style to meet the needs of individuals with ASD may result in interactions that feel a little unusual, this is likely to make the experience more comfortable for them and result in the delivery of more person-centred and effective healthcare.
1. Scottish Intercollegiate Guidelines Network (SIGN). Assessment, diagnosis and interventions for autism spectrum disorders: A national clinical guideline. SIGN, 2016. Available from sign.ac.uk/pdf/SIGN145.pdf
2. Rutherford M, McKenzie K, Johnson T et al. Gender ratio in a clinical population sample, age of diagnosis and duration of assessment in children and adults with autism spectrum disorder. Autism 2016;20:
3. American Psychiatric Association. Diagnostic and statistical manual of mental disorders. 5th edition. Arlington, VA: American Psychiatric Association; 2013.
4. Matson JL, Goldin RL. Comorbidity and autism: Trends, topics and future directions. Res Autism Spectr Disord 2013;7:1228-33
5. NICE. CG128. Autism: recognition, referral and diagnosis of children and young people on the autism spectrum. London: National Collaborating Centre for Women’s and Children’s Health; 2011. Available from nice.org. uk/guidance/CG128
6. NICE. CG170. Autism: The management and support of children and young people on the autism spectrum. London: National Collaborating Centre for Women’s and Children’s Health; 2013. Available from nice.org.uk/guidance/CG170