Since the 1960s autism has been recognised as not a single clinical entity, but a range of conditions along a spectrum (ASC). The autistic spectrum refers to the ways the condition can present which can vary greatly from person to person and throughout the lifespan. While all people diagnosed with an ASC share certain traits, their condition may affect them in different ways. People with an ASC may experience over-, or under-sensitivity to sounds, touch, tastes, smells, light or colours and linguistic skills can range from those who are preverbal to those who display complex grammatically correct speech. Some people with autism live independent lives, some have average or above average intelligence whilst others may have an accompanying learning disability and need a lifetime of specialist support.
Autism is often defined by its difficulties, but many report it can also bring benefits. The cognitive strengths of some individuals may mean that they can focus on tasks without breaks in concentration, and individuals on the autism spectrum report the enjoyment they get from their unique way of thinking and perspective of the world.
The challenges typically associated with autism are often a result of different styles of thinking and processing of information. Nurses and others who work with people with an ASC require a deep understanding of the impact of these different thinking styles in order to develop and apply evidence-based approaches and strategies which allow people with autism to better understand and contribute to the world around them. It has been estimated that 11 in every 1000 people (1.1% of the population) are on the autism spectrum, which means that a GP with a list size of 2,000 is likely to have around 22 people on the autism spectrum on their list. Consequently all nurses, whether working in primary, community services, or secondary services, irrespective of their branch of nursing, will encounter a significant number of service users with an ASC. Despite this prevalence, ASCs are recognised as one of the most poorly-funded areas of research.
Research to date appears to have focussed, in the main, on the aetiology of ASC and their presentation. This has led to an increase in diagnosis and therefore prevalence. However there appears to have been a relatively small number of intervention studies, and these appear to have focussed on children. Yet it is recognised that ASCs are lifelong and people living with an ASC have a higher burden of risk for less than optimal physical health compared with people with a learning disability or the general population. Equally, there is growing evidence to suggest that people living with an ASC not only have difficulties with long-term physical health conditions, but they also have a higher incidence of anxiety and depression. Anxiety and depression in someone with an ASC is sometimes viewed as a behavioural issue and as part of their condition rather than as a mental health condition per se, and therefore not appropriately addressed. This has been described as ‘diagnostic overshadowing’.
Wales was the first country in the UK to take a national approach to autism with the Autistic Spectrum Disorder Strategic Action Plan. A refreshed delivery plan for 2016-2020 was launched in December 2016 and it is a key part is the development of the new National Integrated Autism Service. In line with the requirements of the Autism Act 2011, an autism strategy and action plan were published by the Northern Ireland Executive in January 2014. The Scottish Government also published it's Scottish Strategy for Autism in 2011.
These policy imperatives must be underpinned by robust research evidence. People living with an ASC, and their families, often face health challenges that lead to poorer outcomes compared with the general population. This indicates inequality and a clear need for investment in research to identify and address their health and social care needs. All nurses, wherever they work, care for people who are on the autistic spectrum. It is essential that nurses are equipped with the knowledge and skills, based on robust research evidence, to improve the lives of people living with an ASC. More research is required to make this possible. The RCN could secure funding and commission nurse-led research to enable nurses to improve the lives of people living with an ASC.
That this meeting of Congress requests RCN Council to commission research in relation to Autistic Spectrum Conditions.
The Proposer Kevin Hickson (Devon Branch), began the debate by asking for Congress for a show of hands as to how many delegates had worked with, or cared for, people with an autistic spectrum condition (ASC). This showed to be a significant amount, with Kevin suggesting that all nurses, irrespective of clinical setting, work with service users on the spectrum and that it was a wider ranging issue.
He argued that he RCN is well-placed to commission nurse-led research and nurses are ideally placed to be actively involved in research. He suggested that funding should be sought from the RCN Foundation, as it was a matter that affects every level of nursing.
The Seconder, Simon Jones (Learning Disabilities Forum) emphasised that the research should include what nursing staff understand themselves by reasonable adjustments and the mental capacity act.
Rehanna Allison, first time speaker at Congress, followed this by stating that she had no training as a student on ASCs, and that this should be included from the beginning if these conditions are to become more widely known.
However, Linda Bailey spoke against the resolution, stating that “this isn’t the business of the RCN” and that member’s money shouldn’t be spent on commissioning research, but that it was for other organisations to do so.
June Clark further urged Congress to vote against the resolution as she was concerned about the capacity to commission research. She also highlighted that many speakers had discussed the care of service users with ASCs, rather than research commissioning.
Katie Sutton, who spoke from personal experience as an LD nurse, with diagnosed ADHD argued that “we need more awareness and this comes from research”, urging delegates to support the item.
However, Michael Gregory, an autism therapist, highlighted that “there is a lot of research out there” citing work by the RCN and other organisations, but that “autism is everyone’s business”.
After convincing arguments on both sides of the debate, the resolution was rejected, with the vote not being close enough for a formal count. Stuart ended the session by thanking Congress for a great debate.
Resolution, submitted by the RCN Devon Branch
Page last updated - 05/09/2018