The language used to describe autism is currently the subject of intense and passionate debate. Our primary goals in this work have been to:
- Use language that is respectful to people on the autism spectrum and to those who support them.
- Recognise the very real challenges experienced by autistic people and their families, without portraying autism as a problem to be fixed.
- Ensure that the language we use recognises autism as a lifespan condition experienced by people of all genders and ages, from all walks of life and all around the globe.
For this reason we have not used any functioning labels in the text, and minimised any use of medical and deficit-focused terminology. However, we have included some person-first language (e.g. person with autism), although we know this will not be the preference of many autistic people. Our reasons for doing so include the fact that, historically, person-first language was part of the early disability rights agenda – this was not a language construction imposed by the neurotypical/non-disabled community. Gernsbacher recently pointed out that language can be stigmatising when different constructions are used to describe people with and without a disability – as in the phrase “typically developing children and children with autism” – and we have tried to avoid this throughout by using matched constructions as far as possible. An oft-cited online survey shows that about 60% of autistic respondents approved the use of the identity-first construction “autistic” to communicate about autism, and just under 40% endorsed “autistic person” specifically. Thus identity-first language receives strong support in the community, and many have written eloquently about the importance of this kind of language for their well-being and identity. We have no desire to over-ride this wide-spread and well-articulated preference, and the majority of language here is identity first. However, in the same survey, more than 30% of the autistic group surveyed approved the use of the person-first phrase “has autism” to communicate about autism. Moreover, about 25% of respondents on the autism spectrum selected either “has autism/Asperger’s syndrome” or “person with autism/Asperger’s syndrome” when asked to pick only one preferred language option. It is very clear from the data that, even within an autistic group, there is diversity in opinion, and we have chosen to reflect that diversity in our choice of language in this book. To readers of the future, we can only apologise if this choice seems to have been retrograde.
I’m heartened when autism researchers respect and promote identity-first language and eschew functioning labels. Make it a trend.