Person First Language is about putting as much distance between the person and “the autism”. It is the opposite of acceptance.
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.
the very concept of “accommodation” is so very wrong, because it is based in disablism – the belief that I and others are not, and will never get to be, “normal,” unless “you” cure me by making me like you.
When ABA proponents tell parents that only several hours a day of relentless compliance training can “make us fit for society”, they are not seeing a person. They are seeing a problem, a defect. Yet they insist on Person First Language.
I am defined by autism because I want to be, because by embracing my autism I am embracing myself fully. I cannot separate the way my brain works from the rest of me.
I think that when people insist on saying “but you’re a person first!” and that people don’t acknowledge my disability first, that can lead to accommodations being an afterthought. When folks continue to separate my disabilities from my personhood, they aren’t thinking about what accommodations I need because they’re too busy trying to NOT think about my disabilities.
And yet people keep insisting on pointedly saying that I and others “have autism”, are “individuals who happen to have autism”, are “living with autism”, or the ever popular “are individuals who just happen to have autism”.
Those are a lot of words just to deny a fundamental part of who I am, huh? It’s like people think if they wedge enough words between their identifier noun and the word autism, they’ll pry the condition off of us.
taking away the words I have for my experience just hurts me so you can feel a little more enlightened.
When you use person-first language, you are literally separating me from my identity, deliberately distancing me from an integral aspect to who I am. It feels like someone is dissecting me.
When you use person-first language, you create and then highlight a failing, a disappointment, a limitation. When I declare myself as an autistic, I acknowledge my difference as an acceptable part of my self-identification at the outset, and challenge you to do so too.