autism, Uncategorized

Notes on Language Around Autism

Content warning: functioning labels, discussion of person-first/identity-first language.

Here is a conversation I have seen far too many times online:

Autistic person: As an autistic person, [insert statement of varying controversy here].

Non-autistic person: Actually, the correct terminology is “person with autism,” because you need to put the person first and not dehumanize them!

Autistic person: I’m literally autistic and that’s the terminology I use; stop telling me how to refer to myself.

Etcetera. This debate boils down to how people refer to those on the autism spectrum: as “autistic people” (identity-first language/IFL) or “people with autism” (person-first language/PFL).

The thing is, most people in the autistic community (that is, people who self-identify as being on the autism spectrum), prefer identity-first language. Jim Sinclair, whose work I have mentioned on this blog before, has an excellent essay, Why I Dislike “Person First” Language. The short version of the argument most people who self-identify as autistic give is that autism is inextricable from personhood and presenting us as “people with autism” is equating autism to a bag or outfit that can be picked up or put down at will.

There is a long history of why some disability communities1 prefer PFL or IFL; it often is a matter of how language has been applied as a tool of power and oppression and how it has been reclaimed. In general, both PFL and IFL are accepted. The exceptions – communities that have an extraordinarily strong preference to one or the other – are the autistic and Deaf2 communities (strongly tend towards IFL) and people with intellectual disabilities (strongly tend towards PFL). It is also important to note that generally speaking, disabled people prefer IFL and non-disabled practitioners and caregivers prefer PFL. As in all cases, appropriate language is context-dependent.

There is quite a lot of language about and around autism, though, that is more complex than whether to call a person on the autism spectrum “autistic” or “a person with autism.” Because presentation of autism, along with the functional and support needs of autistic people, can be so varied, there are many different categories autistic people can sort ourselves into and therefore many different ways to label us. This post is an attempt to explain some of the different labels autistic people use, what those labels refer to, controversy around them, and general guidance as how to use them for non-autistic people. It is NOT meant to speak for all autistic people. It is written from my own perspective, using the research I’ve done.

This post is also generally geared towards non-autistic people; I’m not going to presume to tell other autistic people how to refer to themselves. As with all conversations around disability, when speaking to or about a specific person, ask that person what terms they would prefer.

For a rundown of why autistic people, by and large, prefer IFL and links to blogs that use IFL, PFL, or both, I would recommend “The Significance of Semantics: Person-First Language: Why It Matters,” by Lydia X. Z. Brown, published by the Autistic Self-Advocacy Network.

AAC: Alternative and Augmented Communication

Background: Alternative and augmented communication (AAC) is any form of communication other than oral speech used by someone who does not communicate through typical speech. AAC comes in many forms but some of the more common are sign language, writing down messages, symbol or picture boards, gestures, and symbol-to-speech/text-to-speech devices. More people than just autistic people use AAC, and not all autistic people will use AAC.

Person-First Language: person who uses AAC, person who uses [specific communication modality], person who communicates using alternative or augmented methods.

Identity-First Language: AAC user, demonyms referring to specific modalities (signer, text-to-speech user)

Speaking/Non-speaking, Verbal/Non-verbal

Background: While the terms non-verbal and non-speaking are often used interchangably, they are not the same. This is easier to understand when flipped around: one can certainly be verbal withour speaking. (Consider the wide range of grunts and filler sounds like “ah” and “er” that people use to communicate everyday – or that laughter is a non-speaking verbal communication.) Many autistic people are non-speaking to some degree; none are non-verbal.

Person-First Language: Person who doesn’t speak, person who is non-speaking

Identity-First Language: Non-speaking person

Functioning Labels (high-functioning, low-functioning, mild, severe)

Background: Broad-scope functioning labels, quite frankly, are bullshit. Trying to classify autistic people as high- or low-functioning, based on arbitrary measurements that aren’t equally applied between different people, only advances stereotypes of who is “really” autistic, leading to denial of rights for some and denial of support for others. (Four different links, four different self-advocates, all of whom have experience getting sorted into both high- and low-functioning categories based on presentation and assumption.)

Specific labels related to narrowly-defined skills (speaking/non-speaking, can drive/can’t drive, mainstreamed/in a self-contained class) can be useful when evaluating a person or describing one’s skills and needs, but these are not the same as broad functioning labels. (Specific skill labels are also not an adequate replacement for broad functioning labels: “non-speaking” is not a shorthand for “low-functioning.” Nor are specific skill labels always relevant or discernable: when discussing autism in an internet forum, assuming whether or not someone can drive or cook for themselves based on their typing is a fool’s errand.)

I’m not going to use the PFL/IFL distinction for broad functioning labels here because broad functioning labels don’t matter. Specific skill labels will be addressed under “functional and support needs.”

Functional and Support Needs

Background: Functional and support needs can be thought of as akin to strengths and weaknesses; everybody has them. Depending on the autistic person’s background, their community/family structure, their co-occuring disabilities, and their own plans, one person’s functional and support needs can be very different from another person’s.

I cannot drive highways. They freak me out – even being a passenger in the front seat of a car going over 60 miles/hour is difficult. That’s a support need of mine: if I can’t drive myself to appointments in cities 50 miles down the highway (and I have a lot of those), I either need someone to drive me or I need to take public transit.3

Specific skills and labels, as mentioned previously, also fall under this category. If a person is non-speaking, they will need some form of AAC as a support need. If a person is unable to cook for themselves in a safe and timely manner, they will need support with making and obtaining food. (I say safe and timely because many autistic people can cook somewhat, but can’t cook food that is safe for them to eat or can’t cook often enough go make the amount of food they need to survive.)

In academic institutions, support needs are often dealt with through disability resource offices; in the greater world disabled people sometimes obtain help through home- and community-based services, rehabilitation departments, and centers for independent living. It is important, though, not to reduce use of resource offices and HBCS to a high/low functioning binary. Such systems provide a wide range of services for people with varying functional and support needs; many disabled people with interact with them during their lifetimes.

Person-First Language: person with [specific support need] (e.g., person who does not drive, person who does not speak), person who utilizes HCBS

Identity-First Language: [specific support need adjective form] person (e.g., non-driving person, non-speaking person), HCBS user

Autism Spectrum Disorder, Asperger’s Syndrome, PDD-NOS

Background: Until the publication of the DSM-5, Autism Spectrum Disorder, Asperger’s Syndrome, and Pervasive Developmental Disorder, Not Otherwise Specified (PDD-NOS) were all separate diagnoses with differing diagnostic criteria. There were, and still remain, significant disparities in diagnosis between demographic groups: namely, DMAB people were more likely to be diagnosed with autism than AFAB people4, adults are less likely to be diagnosed than (young) children, and people of racial/ethnic/linguistic minority backgrounds are less likely to be diagnosed than their majority counterparts.5

Because many older people on the autism spectrum were originally given a diagnosis other than Autism Spectrum Disorder, some prefer terms or demonyms other than “autistic person/person with autism.” Some of these include “person with Asperger’s Syndrome,” “person with PDD-NOS,” “Aspie,” “developmentally disabled person,” “person with a developmental disability,”6 and most likely others I haven’t heard of yet.

It’s also important to note here that there have been historic political and social hierarchies constructed between people diagnosed with Autism Spectrum Disorder and people diagnosed with Asperger’s Syndrome, where some people diagnosed with Asperger’s Syndrome see themselves as better or more than people diagnosed with Autism Spectrum Disorder. (This difference is similar to some of the hierarchies and divides around functioning labels in that they’re all horseshit.) Mel Baggs calls this “Aspie supremacy” and Lydia Brown calls it “being a shiny Aspie.”

Person-First Language: person with Asperger’s Syndrome, person with PDD-NOS, person with a developmental disability, person with an Autism Spectrum Disorder, person on the autism spectrum

Identity-First Language: Aspie, Autie, developmentally disabled person

Non-autistic person, allistic person

Background: Autistic people are generally split on how to refer to people who are not autistic, similar to how people who aren’t autistic seem to be constantly hung up on PFL vs IFL. (I kid, I kid … mostly.) The more obvious of the two most-used terms is non-autistic/person without autism/person who is not autistic.

The less obvious of the two is allistic/person with allism (although the PFL rendering is mostly used sarcastically by autistic people poking fun at insistence on PFL). Allistic derives from allo- (other) + -istic (pertaining to), in contrast to auto– (self) + –istic (pertaining to).7[^8] Allistic was probably first coined by Andrew Main in 2003 in the essay “allism: an introduction to a little-known condition.” The essay, as evident from the title, is a parody of essays written on autism, which portray autistic people as “other.”

I’m not aware of any major preference the autistic community has in regards to non-autistic/allistic people using one term or the other. Allistic is a less clunky term, whereas non-autistic is obviously more well-known.

Person-First Language: person without autism, person who does not have autism, person not on the autism spectrum, person with allism

Identity-First Language: non-autistic person, allistic person

  1. In this post, I am going to be using identity-first language in general unless explicitly referring to a community or person who (generally) uses person-first. When talking about disability and identity in general, there is no one consensus on PFL vs. IFL and many people will vary the language they use depending on whether they are referring to themselves singularly, a community with a specific disabiliy identity, or disabled people in general. This issue is further complicated by the amount of literature around disability written by non-disabled providers and caregivers who have been taught solely to use PFL. 
  2. Deaf with a capital-D (also referred to as big-D Deaf in spoken conversation) is different than deaf with a lowercase-d (aka little-d deaf). The former refers to people with some degree of hearing loss who take part in a shared culture and language (in the US, mostly ASL). The latter refers to people with some degree of hearing loss who mostly do not use ASL/another sign language, or the condition of hearing loss itself (deafness).  
  3. I have wondered, on more than one occasion, if the preoccupation autistic people often have with trains and other forms of public transit stems somewhat from the fact that many of us rely on public/mass transit in part or wholly to get us where we’re going. 
  4. Designated male at birth, assigned female at birth. “Designated” and “assigned” mean the same thing here; I use different words to make the acronyms easier to read when skimming. The abbreviations are either spelled out or pronounced “dee-mab” (like the queen in Romeo and Juliet) and “eh-fab.” 
  5. In my own experience (although I can’t find any data to support or oppose this), AFAB people diagnosed pre-DSM-5 were more likely to be diagnosed with PDD-NOS or Asperger’s Syndrome, regardless of presentation. (This conclusion comes from my own diagnostic history, he histories of people I’ve met, and information shared with me by a psychologist I worked with.) 
  6. Note on these last two: because “developmental disability” can refer to any disability acquired before the age of 22, these terms don’t just apply to people diagnosed with autism or PDD-NOS. For example, a person with cerebral palsy might refer to themselves as developmentally disabled. 
  7. Non-autistic and allistic should not be confused with “neurotypical,” which is short for “neurologically typical,” i.e., not having any sort of condition or injury affecting brain function. One can be non-autistic and still not be neurotypical, e.g., a non-autistic person with ADHD.