ASC terminology: complexities, diversities, and fears of getting it wrong
4th April 2019
The language we use is important because it reflects our attitudes. Using language with negative connotations to describe conditions can create a judgemental and harmful impression surrounding the condition, and cause offence to those who experience it every day. That’s why speaking to people about the terms they prefer is vital; it enables us as friends, family and clinicians to relate to people on a level that professional jargon cannot. However, finding language and terminology to describe Autism Spectrum Conditions that everyone can identify with has proven to be a difficult task. Research published in 2015 found that there is no single term that everyone prefers when talking about Autism Spectrum Conditions; whilst there are some general trends, there is much varying thought surrounding people’s preferred language and terms. Here, we discuss some of the complexities of terminology used for Autism Spectrum Conditions and our struggles with it as a service.
Person vs identity first language
Person-first language refers to putting the individual before the describing term e.g. “person with autism”, while identity-first language refers to putting the term before the individual e.g. “autistic people”. The general school of thought in recent years has been to use person-first language when describing disabilities or mental health conditions; this is because people feel that it emphasises the value of the individual by recognising them as a person and not a condition. However, some recent articles and opinion pieces have highlighted that many autistic individuals prefer identity first language. This is because some feel that using the term “person with autism” suggests that autism can or should be distinct from the person, which isn’t reflective of how most autistic people feel. In the autism community, many self-advocates suggest that autism is an inherent part of their personality and identity and thus should not be described as external to them. However, there remains division of thought on this topic and there appears to be no clear answer.
‘Aspergers’ vs ‘High / Low Functioning’
The term Asperger’s has historically been used to describe someone on the autistic spectrum who has strong verbal language skills and average or above average intelligence. However, the fifth version of the Diagnostic and Statistical Manual (DSM-5) released in 2013, which is a diagnostic manual published by the American Psychiatric Association, dropped the term ‘Asperger’s syndrome’ from the manual in favour of the term ‘Autism Spectrum Disorder’. This groups autistic people along a continuum, rather than consider Asperger’s and autism as distinguishable conditions. However, clinicians tend to use the terms ‘High Functioning’ and ‘Low Functioning’ to differentiate between people on the autistic spectrum with a learning disability and those without. This has proven problematic for many in the autistic community, as the terms high and low-functioning are understandably considered insulting. However, as clinicians this creates an issue; the services available for those on the autistic spectrum without a learning disability and those with a learning disability may look drastically different and focus on different needs. Therefore, in order to provide successful and meaningful services for autistic people, it may be necessary to make a distinction. This raises the question; if clinicians no longer use the term Asperger’s, and the terms high and low functioning are obviously insensitive, how can we respectfully distinguish between the services that an individual may need? This is a question we are still exploring here at Psychology Chartered when developing the language we use in our autism service.
‘Condition’ vs ‘Disorder’
The official term used in the DMS-5 is ‘Autism Spectrum Disorder’, however experts such as Baron-Cohen (2008) have suggested that the term ‘Autism Spectrum Condition’ is preferable as it recognises both the challenging aspects of autism and the profile of strengths it can bring. The term disorder perhaps contains wholly negative connotations and can carry judgements and expectations with it that the term ‘condition’ does not. For many people their autism is an important and positive part of their identity, thus the term ‘disorder’ may be offensive to them. That is why at Psychology Chartered we have chosen the term ‘Autism Spectrum Condition’ when describing our service, as we hope it promotes neurodiversity, whilst recognising that autistic people often require help from friends, family, carers and clinicians to meet their day to day challenges.
These are just three of the areas of terminology that can be challenging when we are speaking about Autism Spectrum Conditions. As clinicians and service providers, it can be difficult to use terms that both accurately describe autism in a clinical sense, and are relatable to the autistic community. Perhaps the best way to navigate these issues of terminology when creating a service is to ask individuals how they feel about certain terms, and what their preferred terminology is. As always, autistic people are individuals who have unique experiences and feelings, and thus for one person a term may feel wrong, while to another it may feel right. At Psychology Chartered we will continue to strive to use inclusive terminology and push for understanding for Autism Spectrum Conditions.
References:
https://bestpracticeautism.blogspot.com/2011/07/normal-0-microsoftinternetexplorer4.html
http://autisticnotweird.com/labels/
https://autisticadvocacy.org/about-asan/identity-first-language/
https://www.autism.org.uk/about/what-is/describing.aspx
https://the-art-of-autism.com/the-words-that-matter/