Table of Contents
Recent models of Language use and Disability
At Posity, we strive to keep abreast of current issues which may impact the families that we support. The Posity team have regular clinical training sessions, led by a senior lecturer at Monash University. These discussions include current topics, evidence to support our interventions, and recent journal articles.
Over the past 20 years there has been a move away from the ‘medical’ model of disability which identifies people ‘as’ their diagnosis. For example referring to someone as ‘a paraplegic’ or ‘an autistic’. This move has progressed towards the social model of disability, which uses person-first language. For example referring to someone as ‘a person with a disability’, or ‘a person with autism’. Person-first language has been recommended by the American Psychological Association, and is commonly used in research and clinical settings.
Neurodiversity movement and Language use
In more recent years, diversity models of disability have been established, which emphasises how an individual’s disability is integral to their identity and culture, as well as connection to a broader ‘disability’ community, such as the autism or deaf community. The neurodiversity movement advocates for identity-first language (e.g., autistic person), claiming the diagnostic label is integral to their identity.
There has been increased discussion around the language or terms which should be used when referring to people who are diagnosed with an autism spectrum disorder (ASD). This discussion highlights how language and terminology reflect different opinions. Some members of the autism community may prefer, or be offended by some terms. The current debate is mainly around whether for Australian adults, the term ‘autism’ “Defines who I am” (identity-first) or “Is something I have” (person-first).
There has been limited research on this topic. The research which has been done suggests limited agreement about when and why to use specific autism terms. The research does, however, indicate it is essential to use language which respects the dignity and preferences of adults who have been diagnosed with autism.
Discussion of Current Study
In the Journal of Autism and Developmental Disorders (June, 2020) there was an article published exploring this topic. This journal article was recently discussed within our Posity clinical team. This study investigated which autism terms Australian adults diagnosed with autism prefer, which they find most offensive, and why. In this study, participants rated terms for both “Preference” and “Offensiveness”. Participants were also asked Open-ended questions to describe the reasoning for their choices.
In this study there were 198 participants (aged between 18-71 years), who indicated having a formal diagnosis of autism. Participants, were on average, diagnosed in adulthood. Participants generally had some post- secondary education, and 51% indicated that they were employed. In this study there was a relatively high proportion of women, relative to diagnostic rates- this is common in online studies.
Participants were asked “Please indicate your preference for the following terms used to describe autism” and responded on a 7-Point Likert scale (1=strongly dislike, 7=strongly like) to each item. They were also asked “How offensive do you find the following terms used to describe autism (1=not at all defensive, 7=strongly offensive).
Terms were the most commonly used in research and practice settings:
Person-first
- Person with autism
- Person on the autism spectrum
- Person with ASD
- Person with autism spectrum condition
Identity-first
- Autistic
- Autistic person
Results of the Current Study
The results of this study were divided into themes:
Being Autistic is Core to My Identity
Some participants explained that they believe that their autism “defines who I am”. They believe that being autistic is core to their sense of self, and not something that can be removed or separated from them. Some participants also closely linked their preference for identity-first language to pride and empowerment. These participants preferred the term ‘Autistic’.
Having Autism is Part of My Identity
Some participants believed that, although autism is part of their identity, it was only one part, and that being a person came first eg: “Person with autism’ – names them as a person first, and autism second.
Diversity Within the Spectrum
Some participants preferred terms including the work ‘spectrum’. They believed that this term recognises the variation in autism, and highlights individuality.
I am Different Not Disordered
Some participants rejected the medicalised or disorder focused terminology. One participant wrote: I don’t view my autism as a ‘disorder’. There was a recommendation from some participants that we ‘need to drop the term disorder”.
Differences in Opinions
In this study, there were mixed opinions, with both positive and negative reactions to most terms.
Limitations of the Study
This study used an online format, which may not be accessible for all individuals in the autism community. This sample was adults, highly educated, more often employed, and diagnosed later in life. This means that this study likely did not capture the full range of preferences within the autism community.
Summary
This study found that the term ‘Autistic’ was highly divisive- this highlights that what is acceptable for some is offensive for others. At this stage, a complete shift away from person-centred language may not be the way to go.
The term ‘Person on the Autism Spectrum” was most favourable in terms of overall term preference rankings.
Some participants believe that this term stresses both shared humanity (person-first), and including the word ‘spectrum’ reflects their uniqueness from others with an autism diagnosis.
It is also interesting that this term uses the preposition ‘on’ rather than ‘with’. This may allow individuals to retain their autism identity but also highlight their own unique strengths and challenges.
The study suggests that it is important to continue to improve the inclusiveness and respectfulness of the discussion around autism, because language reflects broader assumptions and stigma about a community.
Our Approach at Posity
At Posity we understand the importance of basing our interventions and approaches firmly rooted in current research, and reflecting the needs of the people we support, with dignity and respect.
We have an ongoing commitment to reviewing current research, and will continue to honour and respect the individual needs and preferences of the children, families and adults that we support.
The findings of this research suggest no clear consensus on a single preferred term. As highlighted, the term “Person on the Autism Spectrum” was considered most favourable. It also found that terminology including ‘disorder’ or ‘condition’ were overall unpopular among participants. Therefore, at Posity we will endeavour to use the term “Person on the Autism Spectrum” in written and verbal communication. Where possible we also endeavour to ask individuals with an autism diagnosis about their preferred term, and will respect those preferences.
Reference:
“It Defines Who I Am” or “It’s Something I Have”: What Language Do
[Autistic] Australian Adults [on the Autism Spectrum] Prefer?Simon M. Bury· Rachel Jellett · Jennifer R. Spoor · Darren Hedley
Journal of Autism and Developmental Disorders, 28 February 2020
https://doi.org/10.1007/s10803-020-04425-3
