Person First Language is about putting as much distance between the person and “the autism”. It is the opposite of acceptance.
When I finally turned to social media, I found that the recommendations I’d been given for how to care for Edmund were incomplete and ignored the crucial perspective of disabled adults. On Twitter, I connected with disabled people for the first time. I devoured their tweetstorms, blog posts, and articles. I started to learn about the experience of disability. Stella Young’s TED Talk on disability, with all her wry humor, made me rethink how disabled people are both sentimentalized and denied basic accommodations. By reading their perspectives, I saw Edmund in a whole new light.
I heard disabled adults argue that disabled kids need to learn agency and independence rather than compliance. They want to ensure that disabled people are accommodated and receive what they need to live their lives. Many disabled people don’t want to be cured; disability is frequently essential to their identities. This is even reflected in how most disabled people define themselves: They often prefer to be called “disabled people” because their disability is vital to their sense of self, whereas parents often say “people with disabilities” because they want to stress that their child’s disability doesn’t define them.
This may seem like semantics, but it reflects the tension between these two groups. Some disabled people resent that parents, not disabled people, are often the spokespeople for disability issues, because their priorities can be so different. Upon facing a diagnosis for a child that entails disability, parents often want a cure. Failing that, they frequently want their child’s disability to at least be less apparent to the outside world. I certainly empathized with this impulse. As parents, we want the world to readily accept our kids.
But when I read an autistic person describe firsthand how painful loud noises are, I began to understand how urgent it is that I protect Edmund from similar pain. I shouldn’t try to “manage” this behavior by coaching him to tolerate the pain, as some other parents and health care professionals recommended; I should instead remove him from a place with noises that hurt him. When I read some disabled people say that they did not want to be cured, that their disability was a part of who they were, I thought that perhaps Edmund felt that way too and was unable to communicate it. Julia Bascom, executive director of the Autistic Self Advocacy Network, writes movingly of the fear and pain of being forced as a child to stop flapping her hands: “Not being able to talk is not the same as not having anything to say.”
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.
In this essay I use identity-first language (‘disabled women’) instead of person-first language (‘women with disabilities’). Beyond the political and collective reasons for this choice (#SayTheWord), I don’t like the preposition ‘with’. Prepositions are for relationships; I am not in a relationship with disability.
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.