by Debra Muzikar
(this was written in 2016 and updated in 2018)
In the last couple of weeks I’ve received a couple of emails telling me when I refer to people on the autistic spectrum as autistic I’m being insensitive and politically incorrect. I should instead be using Person First Language (PFL). Yesterday I decided to do a Facebook survey. At this writing, I have over 125 responses on the thread. Who would’ve thunk that when I asked my spectrum friends the language they prefer, I’d receive so many responses.
Years ago, when I was involved in political advocacy, I attended a training at the Alpha Resource Center (ARC) in Santa Barbara. I was told the correct way to refer to any person with a disability is to say person with (fill in the blank), i.e., person with autism, person with cerebral palsy, etc. The rationale was that we are all people first. The origins of PFL are paved with good intentions. PFL was actually created by people with developmental disabilities. They felt that people were writing them off because of their disability and wanted to be seen as people first. Many organizations such as The Arc and UCP have essays about PFL on their websites, saying it is the way we should refer to people with developmental disabilities. Kathy Snow, a long-term disability advocate, on her website Disability is Natural, sells PFL posters that are often displayed in Special Education and advocacy offices. I’ve asked Kathy for a comment on this article, but haven’t received a response.
When I compiled the second Art of Autism book I became aware of Jim Sinclair’s piece “Why I Dislike Person-First Language.” In this 1999 essay he makes the point that “I am autistic because I cannot be separated from how my brain works.” Many in the autism self-advocacy movement agree with Jim.
So what did my informal survey reveal?
Some people feel very strongly about calling themselves Autistic (with a capital A), others like to be referred to as a person with autism, and still others like to say they’re on the autism spectrum. Others like to be called Aspie or AspieGirl. Some say they have autism. And then there are less common labels such as a person with awe-tism, spectrumite, or Aspergian. Steven Coventry has art that goes along with his preferred label of Aspienaut.
Some like Erin Clemens don’t care about the terminology at all, as long as people are respectful. Elena Mary Siff says her son prefers no label and just wants to be seen for who he is. Some like Carolyn Gammicchia want to be called by their first name. Ha!
On preferring to be called autistic, Jane Strauss says “Most of the ‘professionals’ I have met who are the most vehement about ‘person first’ are the most disrespectful of me as a person and assume incompetence. I also to be accurate capitalize the A in Autistic … I am no more a ‘person with autism’ than I am a ‘person with femaleness’ or a ‘person with Jewishness’ or a ‘person with cleverness’ or a “person with Photographic skill. I am an Autistic, Jewish, clever, woman photographer.”
Yes you are Jane!
Silke Heyer, an artist from Germany, who prefers to be called Autistic, Aspie or on the spectrum says “The slight problem I have with the word ‘Autism’ (and therefore ‘A/autistic’) is that an -ism is actually defined as a disease or a doctrine.”
Judy Endow in her sublime blog “Person First Attitude Trumps Language” states “The way many people with an autism spectrum diagnosis wish to be recognized is with the word autistic. For us, autism is not simply an add on to our personhood, but is in fact, foundational to our identity. Just as we would not refer to an African-American as a person with Blackness, to a person of the Jewish faith as a person with Jewishness or a boy as a person with maleness, many of us do not want to be referred to as a person with autism.”
Amy Gravino, who prefers to be called a person with autism or individual with autism, and then Aspie, states what many feel. “The one thing that drives me nuts is people correcting someone when they use the term ‘autistic’… saying things like ‘You should say individual with autism, not autistic,’ and thinking they’re actually being helpful. No one, especially someone who is NOT on the spectrum, has the right to dictate how people who are on the spectrum should be described. Some people prefer ‘person first’ language, some prefer ‘autistic.’ It’s okay to have your preference, but the second you attack someone or try to make them feel bad for how they personally refer to themselves, you’re wayyyy out of line.”
In the end, I think we have to respect what each individual wants to be called, that is the literal meaning of putting the person first. As Dennis Debbaudt states “I respect the opinions of people on the spectrum first. My son refers to himself interchangeably as having autism, I’m autistic, I have autism…” and April Dawn Griffin, an artist from Canada, states “I love being Autistic. I get annoyed when people tell me how I should talk about autism. We aren’t politically correct by nature so the fixation on political correctness amazes me.”
I agree April. I dislike political correctness too.
Taking it to an entirely different level, One of my favorite wise Facebook friends, Patrick Jasper Lee writes “I like to refer to myself as a Chovihano (this means Romani medicine man which I inherited from birth) who is also an autistic synaesthete. Interestingly, there are many aspects of the traditional Chovihano that are in line with Asperger traits. It is a fact that Chovihanos are likely to see things as they are and say it as it is when they are working with people regarding healing and otherworldly matters. For a long time I thought the two were separate but now on investigating more about the otherworld and how people relate to it, I can see how some aspects of shamanism and some aspects of autism have a great deal in common.”
ASo what’s the conclusion. My thread on FB led to more questions than answers and as often happens another topic became a subtopic of conversation – the puzzle piece. Are we over it? Should it stay? That will be my next blog. Stay tuned!
“…people reported using a variety of terms to
describe themselves or the person with autism who they
live with, work with or know in some other capacity (see
Figure 2). The term ‘on the autism spectrum’ was endorsed
by significant numbers of autistic adults (45%), parents
(38%), family members/friends (48%) and especially pro-
fessionals (60%). Also, there was agreement across groups
about the use of certain terms: more than 30% of partici-
pants across all groups stated that they used the terms
‘autistic’, ‘has Asperger’s and ‘is autistic’, while very few
participants reported using ‘is Aspergic’ and ‘low-functioning
autism’. More professionals reported using person-
first terms (‘person with autism’, ‘has autism’ and ‘has
Asperger’s’) than other (disability-first) terms. Yet, there
were inconsistencies within some of the other groups. On
one hand, few parents (14%) reported using person-first
language (‘person with autism’) to describe their children
but considerably more stated that they used the terms ‘has
Asperger’s’ (32%) and ‘has autism’ (53%). On the other
hand, less than one-third of autistic adults reported using
‘person with autism’ (18%) or ‘has autism’ (28%) but, sur-
prisingly, more than half of the group (53%) used ‘has
Asperger’s’. Few participants used the terms ‘is Aspergic’
or ‘low-functioning autism’.”
Spectrum News also came out with a change in policy:
“Language evolves, and many people in the autism community now strongly prefer identity-first language (‘autistic person’). This terminology embraces autism as part of a person’s identity rather than a condition that is separate from them. Some professionals are also beginning to prefer this language. The style guide of the National Center on Disability and Journalism no longer recommends person-first language. Instead, it simply recommends asking a person how they prefer to be identified.
In light of this shift, we’ve decided to start using person-first and identity-first language interchangeably. As always, if a writer expresses a preference, we will defer to that. Our writers will also start asking sources on the spectrum how they prefer to be identified in a story.
We believe using person-first and identity-first language interchangeably is the most inclusive choice, as it makes room for both preferences. Our intention underlying both approaches is the same: to write about autism in a way that is accurate, clear and respectful.”