Being autistic in our ableist societies is full of cruel ironies. One of the cruelest and most damaging is the myth of the unempathetic autistic. We are portrayed as robotic savants in TV and movies, reduced to an unfeeling trait. Whenever there’s a school shooting, out come the autism and mental illness tropes. Empathy myths marginalize and criminalize us.
One of the hallmarks of autism is sensory overwhelm. Many of us are hyper-sensory to the point of overload, meltdown, and burnout. The intensity of sensation is a flood. The world is perceived in high fidelity. We are hypersensitive to our environment, other people’s energy, and the emotional climate around us.
Many experience this as hyper-empathy, an exhausting flood, a painful over-abundance of empathy that we must tamp down to avoid meltdown. We’re not hypo-empathic; we’re hyper-empathic to the point of distress. Some describe their empathy surges as automatic, instinctual, and uncontrollable.
You might not be able to see this flood from the outside. Autistic folks can have difficulties with verbal expression and communication, particularly in neurotypical social settings. The overwhelming empathy is corked up inside. Just because you can’t perceive it, doesn’t mean it’s not there.
There’s also the matter of titration. How much of the empathy flood is appropriate to share in a given social situation? What concentration of empathy does the moment call for? I have trouble deciding what is enough, so I usually keep it in. Autistics often comment that sharing and empathizing is easier with other autistics and neurodivergents than with neurotypicals.
Try this empathy exercise. You’re in a noisy social situation. You are hyper-sensory, anxious, and shy. You are mainlining sights, sounds, scents, and textures while navigating social cues and assumptions made by and for minds different than yours. Now, exchange social styrofoam with strangers who refuse to understand or think beyond their own minds.
We are tired of being called unempathetic monsters by the actual monsters, monsters like Ole Ivar Lovaas—the twisted father of Applied Behavior Analysis (ABA) and conversion therapy. He applied his abusive, torturous techniques to autistic kids and “sissy boys” to make them “indistinguishable from their peers”. He had little regard for their humanity—they were engineering projects.
“The fascinating part to me was to observe persons with eyes and ears, teeth and toenails, walking around yet presenting few of the behaviors that one would call social or human,” he wrote. “Now, I had the chance to build language and other social and intellectual behaviors where none had existed, a good test of how much help a learning-based approach could offer.”
He explained to Psychology Today, “You see, you start pretty much from scratch when you work with an autistic child. You have a person in the physical sense- they have hair, a nose, and a mouth- but they are not people in the psychological sense. One way to look at the job of helping autistic kids is to see it as a matter of constructing a person. You have the raw materials, but you have to build the person.”
What I saw in these students instead was hypersensitivity – painful hypersensitivity that caused them to be persistently confused and disoriented about their surroundings and the people around them. It wasn’t that they didn’t care or weren’t empathic; not at all. It was that life was too loud and too intense, full of static and confusion (this idea would soon be called the Intense World theory of autism, see Markram, Rinaldi, & Markram, 2007). My students were incredibly sensitive to everything around them: sounds (especially very quiet sounds that other people can ignore), colors and patterns, vibrations, scents, the wind, movement (their own and that of the people around them), the feeling of their clothing, the sound of their own hair and their breathing, food, touch, animals, social space, social behavior, electronics, numbers, the movement of traffic, the movement of trees and birds, ideas, music, juxtapositions between voice and body movements, the bizarre, emotion-masking behaviors of “regular” people (oh man, how I empathize)… and many of these students were struggling to stand upright in turbulent and unmanageable currents of incoming stimuli that could not be managed or organized. These autistic students were overwhelmingly and intensely hyper-empathic – not merely in relation to emotions and social cues, but to nearly every aspect of their sensory environments. Their social issues arose not from a lack of empathy, but from an overpowering surplus of it. I knew what that was like. I had not landed in a world of aliens; I had dropped right into a community of fellow hyper-empaths who became my friends.
I’m also autistic. And public perceptions dictate that autistic and empathetic shouldn’t go together.
The popular myth that all autistic people are socially withdrawn and unempathetic - like the teenage protagonist in the novel The Curious Incident of the Dog in the Night-Time or the undiagnosed but stereotypical representation of The Big Bang Theory‘s Sheldon Cooper - hurts the entire autistic community.
The truth, unsurprisingly, is that you can be empathetic (even highly so) and autistic. You can be extroverted and autistic. You can be outgoing and autistic. You can be a people person and autistic. Of course there are autistic folks who are introverted as well, but as the saying goes, “If you met one autistic person, you’ve met one autistic person.” Ascribing generalizations to a diverse group of people only serves to harm us.
According to the Autistic Self Advocacy Network (ASAN), “The idea that autistic people lack empathy is a damaging stereotype that isn’t supported by research. Self-advocates have consistently said that we have different communication styles from others, not a lack of empathy.”
Physicians assumed I couldn’t be autistic and also as emotionally available as I am, and they often misunderstood traits of autism — special interests, oversensitivity to lights and sound, autistic meltdowns and shutdowns — as signs of depression, anxiety, and obsessive-compulsive disorder.
At the same time, my different communication styles, coupled with my pronounced empathy, made it harder for me to figure out my place in the world.
“People’s reactions to me have so often been that I’m either inappropriately or unrealistically empathetic, and partly that’s because our society’s concept of masculine identity is so invested in a toxic denial of empathy in boys and men,” says autistic children’s book author Mike Jung, who is also Korean American.
The myth of the unfeeling autistic person has societal impacts that go beyond the personal as well. In social settings, I’ve been afraid to admit that I’m autistic, because I didn’t want my friends to fall into the trap of thinking that I’m unfeeling and don’t know how to love. More broadly, this idea is often, troublingly, used to criminalize the community.
Historically, there has been much debate about the extent to which autistic individuals experience empathy. I am using the phrase “autistic individuals” rather than “individuals with autism,” per the recommendation from the Autism Self-Advocacy Network. Recent studies indicate that while autistics may experience and demonstrate empathy in different ways from neurotypicals, they do indeed experience it, sometimes to intense degrees. The debate is well summarized here.
Throughout this discussion, I have observed a curious and glaring omission: what about how and whether neurotypicalsempathize with autistics? One of the basic tenets of social skills is reciprocity, an attunement to the back and forth nature of social interactions. If we are examining how well autistics display empathy towards others (the majority of whom are neurotypical), it is only fair to ask how and whether neurotypicals are extending the same courtesy back.
In order to further develop empathy for autistics, I ask myself: what if I had to perform the complex tasks I do every day in the presence of intensely aversive sensory stimuli, such as the airport? How would that affect my ability to focus and maintain a calm, alert state rather than feeling anxious and overwhelmed? This is relevant because every day, when an autistic child attends school, they may be entering an environment they find as overwhelming as I find the airport/airplane. It’s easy to see that being expected to perform well in the presence of aversive sensory stimulation quickly puts one into a fight or flight state, which is not ideal for academic or social-emotional learning.
Some excellent work has been done on empathy and autism. Damian Milton‘s ideas on The Double Empathy Problem are fascinating; recognising that it is as difficult for non-autistics to empathise with autistics, as it is for autistics to empathise with non-autistics.
It is finally being understood that many autistics don’t lack empathy, some may have more empathy than average, it’s just not shown in a non-autistic way. Autism doesn’t mean not feeling things deeply. It doesn’t mean not caring about others. We are not less human or less loving, we just show it in different ways.
The more time I spend on this Earth, the more I realise that true empathy needs an excellent imagination to go with it.
Growing up, people did not empathise with my sensory issues, because they could not imagine someone else feeling something they did not.
There have been times when friends have been blasé about something I’m hurt by, only to apologise later on in life when they have finally experienced the same, and can now understand my feelings. They were not able to imagine how it felt without direct experience.
Which is why people struggle to empathise with autistic people’s experience. They will never share those moments of complete sensory overload or social difficulties in the same way.
There is a persistent stereotype that people with autism are individuals who lack empathy and cannot understand emotion. It’s true that many people with autism don’t show emotion in ways that people without the condition would recognize.
But the notion that people with autism generally lack empathy and cannot recognize feelings is wrong. Holding such a view can distort our perception of these individuals and possibly delay effective treatments.
Empathy is not an autistic problem, it’s a human problem, it’s a deficit in imagination. We all need to work on imagining things we have not been through.
Many of these individuals said they experience typical, or even excessive, empathy at times. One of our volunteers, for example, described in detail his intense empathic reaction to his sister’s distress at a family funeral.
People with alexithymia may still care about others’ feelings, however. The inability to recognize and understand anger might make it difficult to respond empathically to anger specifically. But alexithymic individuals know that anger is a negative state and are affected by others being in this state. In fact, in a separate test we conducted last year, people with alexithymia showed more distress in response to witnessing others’ pain than did individuals without alexithymia.
These preliminary data found that while individuals with AS seem to have impairments in inferring others’ mental states (cognitive empathy), they are as empathically concerned for others (emotional empathy) as control subjects.
One strength of NeuroTribes is the respect Silberman shows to those with firsthand knowledge of what it means to be autistic, a perspective that sometimes surprises. In scientific circles, for example, autistic people are often said to lack empathy, to be “mind-blind.” The idea is now an old one. Researchers can calculate an “empathy quotient” by asking questions like, “I prefer animals to humans,” and “I find it difficult to judge if something is rude.” Other data come from experiments on how people make sense of faces. Autistic people tend to avoid looking at eyes and, presented with isolated images of eyes, have trouble imagining what the depicted person might be feeling. This perspective-taking is referred to as cognitive empathy, or theory of mind, and is distinct from the ability to feel what another feels. In a passage about autism-activist Jim Sinclair, Silberman offers a subtle, humane challenge to the conventional wisdom of researchers. Sinclair is hurt by the description of autism he reads in a pamphlet. “I didn’t consider myself to be someone who didn’t have empathy,” Sinclair says. He wasn’t someone who “lacked the ability to form emotional bonds, and wasn’t interested in relating to others.” As Sinclair describes watching a documentary about another man with autism, there is a jarring incongruity between the scientists’ interpretation of the man’s behavior and Sinclair’s nuanced insights. Where a researcher claims the subject is oblivious, Sinclair sees a familiar struggle to communicate.
If empathy is the ability to inhabit another’s mind, Sinclair’s anecdote suggests that estimates of empathy should be calibrated for just how far one must travel to do so. NeuroTribes amasses a disturbing number of statements by autism researchers who seem unable to make the trip themselves. One clinician describes autism as a terminal illness and autistic children as dead souls. Others consider them “shells” or “husks.” The most unnerving revelation occurs when Silberman profiles Ivar Lovaas, the developer of a common therapy known as Applied Behavior Analysis. In a 1974 interview, Lovaas says that autistic children “are not people in the psychological sense.” He combats an autistic child’s self-injurious behavior by striking her, and his therapy rooms deliver corrective shocks through gridded floors. Spoons of sherbet serve as rewards—a method that seems less sweet when Lovaas reports that “it is a pleasure to work with a child who is on mild food deprivation.” Today’s behavioral therapies tend toward Lovaas-lite, an exacting but benign regimen of small treats, but just last year the Food and Drug Administration held a panel to discuss the use of electrical shock to modify self-injuring and aggressive behavior among autistic patients. Although representatives of a Massachusetts clinic argued it was a necessary treatment of last resort, the panel recommended banning the apparatus used in the procedure.
“Being autistic has always given me a strong sense of justice and fairness, and a burning drive to do the right thing and to fight for it, even when it seems like struggling against the weight of the world. This seems very related to my extreme empathy, which is also tied to my experience of being autistic.
“From the time I was little, I wanted to put a stop to violence of any kind, and I have carried that passion with me to all of my work now against state-sponsored violence against multiply marginalized folks.
“Knowing that injustice or violence exist anywhere is deeply painful for me, whether it directly targets me or not, and I believe that I must do anything within my capacity to work for a world where none of us have to be afraid anymore. If I were not autistic, I am certain I would not have the same drive as I do now.”
‘It’s that myth again that autistic people don’t have empathy, when in fact we often have so much that it’s hard to deal with. That empathy is what helps me to write characters and imagine how they’re feeling.
“The findings demonstrate that, contrary to what has been thought, the apparent lack of interpersonal interest among people with autism is not due to lack of concern,” said Nouchine Hadjikhani, a study author and a Harvard associate professor of radiology. “Rather, our results show that this behavior is a way to decrease an unpleasant excessive arousal stemming from overactivation in a particular part of the brain.”
In other words, when people with autism don’t look others in the eye, it doesn’t mean they don’t care, said Hadjikhani.
He replies by noting a particularly satisfying experiment he conducted in 2010, that proved, with brain scanning (functional Magnetic Resonance Imaging is the full term, fMRI), that you can be diagnosed with autism but still show empathy. Equally and just as importantly, the experiment showed that non-autistics may lack empathy.
The condition that describes this lack of empathy is called alexithymia, and affects roughly 8% of the general population, says Bird. Autism affects 1% of the population. ‘Alexithymia and autism are completely independent of each other,’ he says, ‘…yet even now we are told time and again that autistic people lack empathy. Of course some do, but many do not, and this is really important because it has large consequences for how they are treated by society and whether, for a practical example, they can volunteer their time or find work.’
‘Ask anyone in the field,’ says Bird, ‘what characterizes autism, and they’ll say a lack of empathy. An autistic person can’t recognize emotions. Sometimes they can’t engage in moral reasoning. We think that’s completely wrong. Completely inaccurate.’
His broader message to the community is that ‘individuals with autism are not unempathic, psychopathic monsters. This is really important. We can’t be wrong about that one. …I have heard so many stories about people who simply cannot get jobs or even volunteer their time because of this damaging myth, which causes additional frustration for the parents of autistic individuals. Individuals with alexithymia are also not psychopaths of course, although they may struggle to understand emotions in a typical way.’
The ‘double empathy problem’ refers to the mutual incomprehension that occurs between people of different dispositional outlooks and personal conceptual understandings when attempts are made to communicate meaning.
In a sense it is a ‘double problem’ as both people experience it, and so it is not a singular problem located in any one person.
The ’empathy’ problem being a ‘two-way street’ has been mentioned by both ‘autistic writers’ (Sinclair, 1993) and non-autistic writers alike (Hacking, 2009)
Am highly empathetic to the point of over-empathizing. I may not always be able to process cognitively what I’m experiencing (see point below), but I am overwhelmed by the emotional responses of people around me — which includes things I read on the internet, because I’m experiencing them as the other person does. (Not in the way of, I know how it is to be them when I’m not them or don’t have the same experiences, but in the way of, their anger settles in me, or their sadness settles in me, and I can’t get rid of it.)
NT members of society interact with each other, at least on the surface. But do they actually exhibit social-emotional reciprocity, or are they merely going through the motions, masking a true impairment? I’ve often wondered (even before realizing my place on the autism spectrum) if people actually engaged in true reciprocation, or if they were simply better at hiding their inability to do so?
Is “normal back-and-forth communication” in short snippets of superficial information all that desirable? Or would it be more helpful if the conversationalists dove into greater detail from time to time?
When they share their interests and emotions, are they really sharing them? Or are they cherry-picking soundbites that show the world a Likeable Them? Are they simply better (relatively speaking) at “putting on” the “right” emotional “skin” or launching the “right” emotional script than we are? Might their true responses be more similar to ours than anyone realizes, except that they’re comparatively better at pretending or “acting the part”?
Do they really share their interests? Or does their small talk (or other conversation) focus more on bonding over a lower common denominator (such as sports, current events, celebrities, etc) that they know through their experience will be shared by the majority of other people?
NT society frequently fails to respond to social interactions, too. One frequent example: I’ll actually work up the guts to glance the direction of a passing person and actually say “hi”; the person might glance directly at me, but fail to say “hi” back. I know there’s a plethora of reasons for this – hearing impairment, preoccupation, etc, but it’s such a common phenomenon that I begin to wonder just how “reciprocative” the rest of the world is in turn.
I don’t know a single autistic person who supports Autism Speaks or the Light It Up Blue campaign. Many autistics consider Autism Speaks to be a eugenicist hate group that diverts resources, talks over autistic people, spreads harmful “awareness”, and funds research and practices that abuse and kill us. April is a month of disinformation, and Autism Speaks is responsible for much of it.
This video explains what’s wrong with Autism Speaks.
Here are a few pieces detailing the troubled history of Autism Speaks.
“Participants associated puzzle pieces with imperfection, incompletion, uncertainty, difficulty, the state of being unsolved, and, most poignantly, being missing,”
“If an organization’s intention for using puzzle-piece imagery is to evoke negative associations, our results suggest the organization’s use of puzzle-piece imagery is apt,” the study authors wrote. “However, if the organization’s intention is to evoke positive associations, our results suggest that puzzle-piece imagery should probably be avoided.”
Like most neurodiversity and disability communities, we prefer identity-first language, not person-first language. I’m autistic, not a person with autism. Autistic is my identity. I’m a disabled person, not a person with disabilities. Disabled is my identity.
“People-first” language is meant to divide, it is meant to demean, it is meant to dehumanize, it is meant to pathologize, and yet, it is meant, as I said before, to make its users feel good. In that way it is ultimately destructive because it covers up the crimes.
Only when people get to choose their own labels will we get anywhere toward building an equitable culture.
Autism is not a disease. Vaccines do not cause autism. There is no cure for autism, nor do autistic people want to be cured. Autism is an integral part of our being. Removing it would be a death of self. Autism is an identity and a culture. It is a valuable and natural part of human diversity.
ABA (Applied Behaviour Analysis) is abuse. It is torture. There is no excusing it. We do not condone it. Autistic people are not neurotypical. We cannot and should not be made neurotypical. Trying to pass as neurotypical comes at great cost and leads to burnout. Being forced to pass leads to PTSD.
I’ve yet to meet a student who didn’t instinctively know to pull back and put their hands in their lap at this order. Thanks to applied behavioral analysis, each student learned this phrase in preschool at the latest, hands slapped down and held to a table or at their sides for a count of three until they learned to restrain themselves at the words.
The literal meaning of the words is irrelevant when you’re being abused.
When I was a little girl, I was autistic. And when you’re autistic, it’s not abuse. It’s therapy.
They actually teach, in applied behavioral analysis, in special education teacher training, that the most important, the most basic, the most foundational thing is behavioral control. A kid’s education can’t begin until they’re “table ready.”
I need to silence my most reliable way of gathering, processing, and expressing information, I need to put more effort into controlling and deadening and reducing and removing myself second-by-second than you could ever even conceive, I need to have quiet hands, because until I move 97% of the way in your direction you can’t even see that’s there’s a 3% for you to move towards me.
I will never understand how people can justify the use of “quiet hands”. If you are unaware of what this phrase means, or of the implications for autistic people, you need to read Quiet Hands by Julia Bascom.
When a parent, sibling, educator, therapist, medical professional, etc justifies the use of quiet hands, it baffles me. Do they understand what stimming is? Do they realize that my hands are the key to helping me see the world? Or do they just see my movements as separate from me, as a source of embarrassment for them? I tend to think it’s the latter, that it’s because stimming draws unwanted attention that people want to quiet my hands in the first place. They don’t understand the point of stimming, or I think (hope) they wouldn’t try and prevent it.
So this is what happens when you “quiet hands” us. It’s the equivalent to duct taping an NT person’s mouth shut or preventing a nonspeaking D/deaf person from signing. You are taking away our natural language. You make interacting with the world that much harder.
Advice to Teachers and Parents of Neurodivergent Kids
Be patient. Autistic children are just as sensitive to frustration and disappointment in those around them as non-autistic children, and just like other children, if that frustration and disappointment is coming from caregivers, it’s soul-crushing.
Presume competence. Begin any new learning adventure from a point of aspiration rather than deficit. Children know when you don’t believe in them and it affects their progress. Instead, assume they’re capable; they’ll usually surprise you. If you’re concerned, start small and build toward a goal.
Meet them at their level. Try to adapt to the issues they’re struggling with, as well as their strengths and special interests. When possible, avoid a one-size-fits all approach to curriculum and activities.
Treat challenges as opportunities. Each issue — whether it’s related to impulse control, a learning challenge, or a problem behavior — represents an opportunity for growth and accomplishment. Moreover, when you overcome one issue, you’re building infrastructure to overcome others.
Communicate, communicate, communicate. For many parents, school can be a black box. Send home quick notes about the day’s events. Ask to hear what’s happening at home. Establish communication with people outside the classroom, including at-home therapists, grandparents, babysitters, etc. Encourage parents to come in to observe the classroom. In short, create a continuous feedback loop so all members of the caregiver team are sharing ideas and insights, and reinforcing tactics and strategies.
Seek inclusion. This one’s a two-way street: not only do autistic children benefit from exposure to their non-autistic peers, those peers will get an invaluable life lesson in acceptance and neurodiversity. The point is to expose our kids to the world, and to expose the world to our kids.
Embrace the obsession. Look for ways to turn an otherwise obsessive interest into a bridge mechanism, a way to connect with your students. Rather than constantly trying to redirect, find ways to incorporate and generalize interests into classroom activities and lessons.
Create a calm oasis. Anxiety, sensory overload and focus issues affect many kids (and adults!), but are particularly pronounced in autistic children. By looking for ways to reduce noise, visual clutter and other distracting stimuli, your kids will be less anxious and better able to focus.
Let them stim! Some parents want help extinguishing their child’s self-stimulatory behaviors, whether it’s hand-flapping, toe-walking, or any number of other “stimmy” things autistic kids do. Most of this concern comes from a fear of social stigma. Self-stimulatory behaviors, however, are soothing, relaxing, and even joy-inducing. They help kids cope during times of stress or uncertainty. You can help your kids by encouraging parents to understand what these behaviors are and how they help.
Encourage play and creativity. Autistic children benefit from imaginative play and creative exercises just like their non-autistic peers, misconceptions aside. I shudder when I think about the schools who focus only on deficits and trying to “fix” our kids without letting them have the fun they so richly deserve. Imaginative play is a social skill, and the kids love it.
Instead of intensive speech therapy – we use a wonderful mash-up of communication including AAC, pictures scribbled on notepads, songs, scripts, and lots of patience and time.
Instead of sticker charts and time outs, or behavior therapy – we give hugs, we listen, solve problems together, and understand and respect that neurodivergent children need time to develop some skills
Instead of physical therapy – we climb rocks and trees, take risks with our bodies, are carried all day if we are tired, don’t wear shoes, paint and draw, play with lego and stickers, and eat with our fingers.
Instead of being told to shush, or be still- we stim, and mummies are joyful when they watch us move in beautiful ways.
Instead of school – we unschool and can follow our interests, dive deep in to passions, move our bodies, and control our environment
No student will have mechanical limitations in access to either information or communication — whether through disability, inability at this moment, or even just discomfort. Learning is our goal, and we make it accessible.
Presume competence means – assume your child is aware and able to understand even though they may not show this to you in a way that you are able to recognize or understand.
To presume competence means to assume your child or the other person does and can understand when they are being spoken of and to.
Presume competence means talk to your child or the other person as you would a same age non-Autistic child or person.
Presumptions of competence means treating the other person with respect and as an equal without pity or infantilization.
It does not mean that we will carry expectations that if not met will cause us to admonish, scold or assume the person is being manipulative or just needs to “try harder”.
To presume competence does not mean we assume there is a “neurotypical” person “trapped” or “imprisoned” under an Autistic “shell”.
Presuming competence is not an act of kindness.
Presuming competence is not something we do because we are a “good” person.
We do not get to pat ourselves on the back because we have presumed competence. If we believe we deserve a pat on the back and/or acknowledgement, then we are not presuming competence, we are more likely being condescending.
“To not presume competence is to assume that some individuals cannot learn, develop, or participate in the world. Presuming competence is nothing less than a Hippocratic oath for educators.”
Never assume that the ability to speak equals intelligence. There are plenty of autistic people who have trouble speaking but who have glorious creative worlds inside them seeking avenues of expression. Never assume that an autistic person who can’t speak isn’t listening closely to every word you say, or isn’t feeling the emotional impact of your words. I’ve interviewed many autistic people who said they could hear and understand everything around them while people called them “idiots” or described them as “out of it” to their faces. Ultimately, presuming competence is the ability to imagine that the person in front of you is just as human as you are, even if they seem to be very impaired. If you understand that the autistic students in your class are just as complex and nuanced and intensely emotional and hopeful as you are, you’ll do everything in your power to help them lead happier and more engaged lives.
No child within the Albemarle County Public Schools should need a label or prescription in order to access the tools of learning or environments they need. Within the constraints of other laws (in particular, copyright) we will offer alternative representations of information, multiple tools, and a variety of instructional strategies to provide access for all learners to acquire lifelong learning competencies and the knowledge and skills specified in curricular standards. We will create classroom cultures that fully embrace differentiation of instruction, student work, and assessment based upon individual learners’ needs and capabilities. We will apply contemporary learning science to create accessible entry points for all students in our learning environments; and which support students in learning how to make technology choices to overcome disabilities and inabilities, and to leverage preferences and capabilities.
“People-first” language is meant to divide, it is meant to demean, it is meant to dehumanize, it is meant to pathologize, and yet, it is meant, as I said before, to make its users feel good. In that way it is ultimately destructive because it covers up the crimes.
Only when people get to choose their own labels will we get anywhere toward building an equitable culture.
I’m autistic, not a person with autism. Autistic is my identity.
I’m a disabled person, not a person with disabilities. Disabled is my identity.
Identity first language is common among social model advocates. When hanging out in social model and neurodiversity communities, identity first is a better default than person first. Every autistic and disabled person I know uses identity first language. The words autistic and disabled connect us with an identity and a tribe. They help us advocate for ourselves.
But please realise this: when autistic adults offer their experiences or insight, consider listening. We do not speak for your child, but we’re not really all that different from them. Telling us we’re “not autistic enough” insults us and trivialises the hardships many of us have endured. Hardships that, yes, may be very different from what your child might experience, but hardships nevertheless. I’ve earned the right to label myself as autistic. It explains everything. It is not all that I am, but it defines so much of who I am.
And that is why, for me at least, the identify label comes first. That I’m still a person should be obvious.
When you excise a core defining feature of a person’s identity from their living, breathing self, you sort of objectify them a bit. And you make that core defining feature optional. Because it can be safely removed, and they’re still a person. Right? Well, a person, yes — but not the sort of person they know themselves to be. And not the sort of person you can truly get to know. Because you’ve denied one of the main characteristics of their nature, out of an intention to be … compassionate? Dunno. Or maybe sensitive?
Whatever the original intention, the effect is just a bit dehumanizing. And a lot of us don’t like it.
So, if you’re into PFL – person-first language – please reconsider before you use it regarding autism. Cancer is one thing. Plaque psoriasis is another. Autism… well, that’s in a league all its own. And I wouldn’t leave that domain for all the money (or well-intended compassion) in the world.
Though person-first language is designed to promote respect, the concept is based on the idea that disability is something negative, something that you shouldn’t want to see. After all, no one tells me that I should call myself a person with femaleness or a person with Jewishness. I’m a Jewish woman. No one questions that. Yet when I dare to call myself a disabled person, it seems the whole world turns upside down. That’s because gender and religion are seen as neutral, if not positive, characteristics. The idea of separating the disability from the person stems from the idea that disability is something you should want to have separated from you, like a rotten tooth that needs to be pulled out.
Disability is only negative because society makes it so. For sure, there are negative aspects of my disability. (For the sake of simplicity, I’m focusing solely on my physical disability, which is both the most visible and the most integrated into my being.) Chronic pain and fatigue are no picnic. But for the most part, my disability is just another thread in the tapestry of my life. Pull it and the whole thing might unravel. Pull it and you might get an ugly hole where something beautiful once was.
Identity-first language is founded upon the idea of the social model of disability. In a nutshell, the social model says that though our impairments (our diagnostic, medical conditions) may limit us in some ways, it is the inaccessibility of society that actually disables us and renders us unable to function. The most basic example is wheelchair accessibility. If I am using my wheelchair and I can’t go to a restaurant because it doesn’t have a ramp, am I disabled by my cerebral palsy or am I disabled by the inaccessibility of the restaurant?
If that restaurant has a ramp, I am able to function perfectly within that situation. I am able to go in, sit at a table, order my food, eat it, and pay, just like everyone else. My wheelchair is not the problem. The inaccessibility of the restaurant is. Saying that I am disabled more accurately highlights the complex biosocial reality of disability. I am not merely a person existing with a label; I am constantly disabled and enabled by the interplay of my body and the environment.
Taking a cue from the radical Deaf community, ANI members began to refer to themselves as “Autistic” instead of saying that they were people with autism. “Saying ‘person with autism’ suggests that autism is something bad—so bad that it isn’t even consistent with being a person,” Sinclair observed. “We talk about left-handed people, not ‘people with left-handed- ness,’ and about athletic or musical people, not about ‘people with athleticism’ or ‘people with musicality’ . . . It is only when someone has decided that the characteristic being referred to is negative that suddenly people want to separate it from the person.”
In the case of “People First” language for those with disabilities , what we have is not belief in linguistic emancipation, but a desire to “change something” in order to make educators feel responsive. Special education services haven’t changed much at all in the past 40 or 50 years – we use the same deficit model, we use the same types of assessment, we still flail around with school-generated solutions which foster dependence – but we can see we have “evolved,” no retards, no cripples, no morons, hey “we’ve changed since the bad old days.”
But disability remains a social identity. To work from Tom Shakespeare, it is the intersection of ability and the social structure. There is no such thing as a legitimate way to define “normal.” After all, if there were, the bizarre global minority of humans without black hair and brown eyes would be considered freaks. So, society defines certain people as outside of normal, and they do that with words.
For some groups, the hyphenation strategy is reached, be it “Scotch-Irish” or “African-American” or even “Student-Athlete,” but for others, where a real belief in pathology remains, we keep the “person with” structure. A student with the swine flu. A student with cancer. A student with a learning disability.” We don’t hyphenate any of those because we do not accept them as cultural identities, rather, we view them as illnesses.
So call me “dyslexic,” and call me “multi-attentioned” (or something), but stop pathologizing me. I don’t “have” these things, I “am” these things, because your society has made it that way.
I believe that we have to challenge accepted strategies and ideas. And whether you call it “Normalism” or “Disablism” we need to understand how narrative impacts cultural belief. If we convert horrid prejudices into pleasant sounding phrases, we diffuse those prejudices as an issue. So, since you treat me as if I am “retarded,” please don’t hide behind your nonsensical, “Student with Learning Disabilities.” That language might make you feel better, but it does nothing for me.
As long as you consider one way of doing things “normal,” you will demean me and treat me as less than fully human. What I was trying to say in this post –in a way which would provoke conversation – was that 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.
“People-first” language is meant to divide, it is meant to demean, it is meant to dehumanize, it is meant to pathologize, and yet, it is meant, as I said before, to make its users feel good. In that way it is ultimately destructive because it covers up the crimes.
Only when people get to choose their own labels will we get anywhere toward building an equitable culture.
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.
When we are abused, and murdered, the perpetrators don’t think we are “much more than autism”. They use Person First Language and forget our humanity.
Or maybe they are trying to beat, stab, suffocate or shoot “the autism” out of us.
When the media blame us for our own murders, by pointing out how “tragic” and “pitiful” our lives are, they use Person First Language to point out how non-persons we are. This is dehumanization.
When the media and some “experts” speculate that a mass murderer might be Autistic, they use Person First Language to say autism makes people evil. To them, that’s all we are.
Person First Language is not about “seeing a person before the diagnosis”, or about “seeing much more than the diagnosis”.
Person First Language is about putting as much distance between the person and “the autism”. It is the opposite of acceptance.
It is like a contest to see how many ways one can talk about Autistics without using the word “Autistic”.
This is how Person First Language proponents refer to us:
“Person with autism”
“Person has autism”
“Person on the autism spectrum”
“Person with a diagnosis of autism spectrum disorder”
Each time, they come up with a longer description that starts with “person” and ends with “autism”.
It would be much more inclusive, and respectful of our voices, to simply say “Autistic”. It is simple and direct. It does not waste words, it is easily understood. More importantly, it is the most accurate description of who we are.
In that wave of claiming who we are, from our perspective—in our proclaiming of what it is actually like to live as an autistic individual—many autistic self-advocates have embraced the word ‘autistic.’ In this way, we are not running from the degradation and falsehoods, but proudly proclaiming: “I am autistic.” It may seem counter intuitive. But indeed, the act of accepting the word “autistic,” in and of itself, makes something once untouchable—now held. For you see autism is not a disease—though many think it so, or at maximum treat autism like a plague to be eradicated.
The issue we take, in most circles of Aspergerians and Auties, is with the trials and tribulations parents face and share publicly in raising such “anomalies” (children with autism). Interestingly enough, if you listen with intent, you will note that the autistic parents of autistic children aren’t complaining publicly about the woes of being a parent of a child with autism. We aren’t declaring how hard it is to be a parent of a child with autism. Nor are we seeking sympathy. We understand what our child is experiencing. We understand the torment of living in a world, where you not only feel like you don’t belong, but are told from the authorities that be (parents included) that your condition, your being, your very existence has “affected” everyone around you.
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 leave it up to my son about how he wants to define himself. I will never tell him how to perceive autism. I imagine his perception will be ever-changing.
I have not and will not proclaim my family was affected by my son’s autism; nor will I say my son is affected by the trials that come with autism. There is not some outside boogeyman disease, illness, or even condition making our life hard. Life is just hard, sometimes
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.
There’s this idea that we’re given more respect if we separate our disability or disabilities from our personhood, that the more distance we place between ourselves and our disability, the more respect we’re given. This very idea is rooted in ableism.
Also important to note is that whether I’m called a Disabled person or a person with a disability, I am treated with the same level of disrespect.
When people continue to separate our disabilities from our personhood, they aren’t thinking about how our disabilities impact our personhood and how its viewed by others.
My friend Eb on Twitter worded it best, people shouldn’t need to use person-first language in order to be reminded that we’re human beings deserving of respect and rights and that we also have other identities.
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.
That’s a thing I’ve been saying forfuckingever. 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.
I know that y’all are taught person first language, and many communities prefer it and I support that. But the purpose of person-first language is to respect the person you are describing. Ask them what they prefer. I, and many MANY other autistic people, prefer to be called autistic, not “living with autism” or “having autism” or “an individual who happens to have an intimate neurological understanding from living with autism” or whatever.
I don’t have autism. I am autistic. This is important to me. It also doesn’t mean that I “see myself as a disability first and a person second,” whatever that is supposed to mean. In my eyes, I’m Julia. Just Julia.
I cannot separate out which parts of me brain are wired because baby I was born this way and which parts of my brain should be marked off as AUTISM. Nor do I particularly care, to be honest.
Being autistic fundamentally shapes how I perceive and interact with the world, with a million cascading and subtle consequences. I would not be the same Julia I am now without whatever parts of my brain can be marked as AUTISTIC (and that’s bad science in the first place, the brain is a whole lot more complicated and subtle than that, we know that there isn’t one gene or one wiring variation that leads to autism).
I am not flattered when you say that I don’t really see you as autistic or it’s just a label.
Because what you mean is that “I don’t really see you as Bad right now,” and while I am incredibly grateful for that safety, I am also furious that autistic means Bad at all in the first place and that I feel I have anything to be grateful for in that entire situation.
It is, indeed, just a label. One without nearly the neutrality of, say, Campbell’s Chicken Soup. All your wishing in the world won’t change that, and taking away the words I have for my experience just hurts me so you can feel a little more enlightened.
“Autistic”, or “with-Autism”? I had to decide this for myself quite some time ago, after a great deal of thought, since there are positives and negatives to both methods. Finally, it boiled down to one factor: communication. What does each say to the listener? What does each say to me? And to what effect?
There are basically three groups who would, sensibly, prefer person-first language for autism. First, those who want to appear to care. Person-first language implies that you don’t blame the person-with-autism for being they way he is. That you are presupposing that the autism made him do it – whatever it is – and everyone should cut him slack. However, it also implies that he will so certainly fail to behave acceptably that you want to get out in front of his failure and forgive him in advance. Person-first language protects this group from having to internalize the idea that people can be radically different, while still deserving complete acceptance as they are. Or it’s simply a shorthand for “you’re damaged and inferior, but we forgive you.”
Second, there is group that believes that autism is something you catch. Like a virus. Or that it’s the result of an accident that suddenly injured you. They believe that it is simply a matter of time and effort before you are relieved of your autism, and that you will be just like you are now – just with all the problems removed and the nice parts remaining. This perspective is generally the result of failing to accept that your child is not just a poor substitute for the “real” child you believe you deserve. Person-first language protects this group from reality.
Finally, of course, there are those who, for their own practical reasons, prefer to preserve the illusion that autism can be removed from a person like a stain, leaving a pristine child ready to please his parents and join mainstream society invisibly. Some of these people have created images of themselves as beacons of hope with many books and speeches and postings, some as cutting edge researchers into a cure or the cause, some as major movers-and-shakers in the industry who may – any day now – slay the dragon. Person-first language preserves the delusion these people succeed within.
In all these cases, person-first language is used to hide the truth. And in none of these constructs is the autistic actually the primary beneficiary of the charade. Person-first language used as a default by anyone but the autistic himself is always selfish.
And always demeaning. The overwhelming message of “person-with-autism” is always “we wish we could really remove the autism from you, because it’s offensive, and we’re sure you’d be more acceptable without it.” Of course, it can’t be removed. At least not in the near future. So, until then, the autistic is stuck with his unacceptableness, no matter how kind and apologetic the label appears to others.
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.
I would argue that “person with autism” risks misrepresenting the nature of the condition. It implies that autism is an attachment, like a torn ligament or a brain tumour, which can be isolated and removed without otherwise affecting the individual, when to my mind autism is intrinsic to the person’s identity.
Another flashpoint is the word ‘suffering’. One of the surest ways to raise the hackles of the autism community is to write or say that somebody “suffers from” autism or Asperger’s syndrome. I’ve read and heard two examples of this in the last fortnight alone. There are two conflicting responses here: on the one hand it’s insulting to people who get by reasonably well although they have some form of autism, and yet on the other there are autistic people who quite evidently do suffer, and we shouldn’t shy from saying so. The key point, I think, is that while they may suffer from depression, from isolation, from short attention spans or from an inability to express themselves, saying they “suffer from autism” is aggravating to people who have worked hard to overcome the more debilitating aspects of the condition. It also puts a too simplistic gloss on the way people experience autism, since a strong adherence to routine can be comforting, and even rewarding, in the right context.
Though it is common for medical and cure-focused communities to refer to an autistic person as a person with autism, such references are not the lingo of the greater whole of the Autistic Community.
In a nutshell, saying a person has autism may imply that the person is defective or that there is an inherent problem or sickness within the person. It also implies that autism can somehow be separated from the person.
Being a deaf person, as well as a member of the Deaf community, I prefer to be referred to as Deaf. This is preferable to me rather than the terms “hearing impaired” or “person who has deafness.” I don’t have deafness, I am deaf. For me, it is the same with autism. I don’t have autism, I am autistic. Since I do not view my deafness and autism as negatives, I use language that puts me in the direct light of both autism and deafness.
Saying “person with autism” suggests that the autism can be separated from the person. But this is not the case. I can be separated from things that are not part of me, and I am still be the same person. I am usually a “person with a purple shirt,” but I could also be a “person with a blue shirt” one day, and a “person with a yellow shirt” the next day, and I would still be the same person, because my clothing is not part of me. But autismis part of me. Autism is hard-wired into the ways my brain works. I am autistic because I cannot be separated from how my brain works.
Saying “person with autism” suggests that even if autism is part of the person, it isn’t a very important part.
Yet autism goes deeper than culture and learned belief systems. It affects how we relate to others and how we find places in society. It even affects how we relate to our own bodies. If I did not have an autistic brain, the person that I am would not exist. I am autistic because autism is an essential feature of me as a person.
Saying “person with autism” suggests that autism is something bad–so bad that is isn’t even consistent with being a person.
It is only when someone has decided that the characteristic being referred to is negative that suddenly people want to separate it from the person. I know that autism is not a terrible thing, and that it does not make me any less a person. If other people have trouble remembering that autism doesn’t make me any less a person, then that’s their problem, not mine. Let them find a way to remind themselves that I’m a person, without trying to define an essential feature of my personhood as something bad. I am autistic because I accept and value myself the way I am.
In the autism community, many self-advocates and their allies prefer terminology such as “Autistic,” “Autistic person,” or “Autistic individual” because we understand autism as an inherent part of an individual’s identity — the same way one refers to “Muslims,” “African-Americans,” “Lesbian/Gay/Bisexual/Transgender/Queer,” “Chinese,” “gifted,” “athletic,” or “Jewish.” On the other hand, many parents of Autistic people and professionals who work with Autistic people prefer terminology such as “person with autism,” “people with autism,” or “individual with ASD” because they do not consider autism to be part of an individual’s identity and do not want their children to be identified or referred to as “Autistic.” They want “person-first language,” that puts “person” before any identifier such as “autism,” in order to emphasize the humanity of their children.
Because when people say “person with autism,” it does have an attitudinal nuance. It suggests that the person can be separated from autism, which simply isn’t true. It is impossible to separate a person from autism, just as it is impossible to separate a person from the color of his or her skin.
Autism, however, is not a disease. It is a neurological, developmental condition; it is considered a disorder, and it is disabling in many and varied ways. It is lifelong. It does not harm or kill of its own accord. It is an edifying and meaningful component of a person’s identity, and it defines the ways in which an individual experiences and understands the world around him or her. It is all-pervasive.
Person-first language opponents believe the best way to do this is by recognizing and edifying the person’s identity as an Autistic person as opposed to shunting an essential part of the person’s identity to the side in favor of political correctness.
It is impossible to affirm the value and worth of an Autistic person without recognizing his or her identity as an Autistic person. Referring to me as “a person with autism,” or “an individual with ASD” demeans who I am because it denies who I am.
When we say “person with autism,” we say that it is unfortunate and an accident that a person is Autistic. We affirm that the person has value and worth, and that autism is entirely separate from what gives him or her value and worth. In fact, we are saying that autism is detrimental to value and worth as a person, which is why we separate the condition with the word “with” or “has.” Ultimately, what we are saying when we say “person with autism” is that the person would be better off if not Autistic, and that it would have been better if he or she had been born typical. We suppress the individual’s identity as an Autistic person because we are saying that autism is something inherently bad like a disease.
Yet, when we say “Autistic person,” we recognize, affirm, and validate an individual’s identity as an Autistic person. We recognize the value and worth of that individual as an Autistic person — that being Autistic is not a condition absolutely irreconcilable with regarding people as inherently valuable and worth something. We affirm the individual’s potential to grow and mature, to overcome challenges and disability, and to live a meaningful life as an Autistic. Ultimately, we are accepting that the individual is different from non-Autistic people–and that that’s not a tragedy, and we are showing that we are not afraid or ashamed to recognize that difference.
“Autistic” is another marker of identity. It is not inherently good, nor is it inherently bad. There may be aspects or consequences of my identity as an Autistic that are advantageous, useful, beneficial, or pleasant, and there may be aspects or consequences of my identity as an Autistic that are disadvantangeous, useless, detrimental, or unpleasant. But I am Autistic.
These are not qualities or conditions that I have. They are part of who I am. Being Autistic does not subtract from my value, worth, and dignity as a person. Being Autistic does not diminish the other aspects of my identity. Being Autistic is not giving up on myself or limiting myself or surrendering to some debilitating monster or putting myself down. Being Autistic is like being anything else.
Person-first language is a form of hypocrisy. Its strongest advocates are non-disabled parents and professionals, very well-meaning people who love their friends and family members and students deeply and who want to do right by them by treating them as human beings. But if a fairly large number of us to whom this type of language refers find it objectionable, why are we told “Well I respect your opinion, but I think person-first language is more respectful.”
Why is it culturally appropriate and typical to accept race, religion, and nationality as markers of identity that ought to be designated with proper adjectives that (in English) precede the noun “individual” or “person” and not those that fall under the category that we call “ability?” Is it a reflection of a secret fear of the non-disabled of people who are not like them, or is it a reflection of the inhibiting fear of offending one of us? As most of us prefer to identify with proper-adjective language (disabled or Autistic), using this language is highly unlike to offend. Asking me, “So you have autism?” will almost always produce a wince and a cringe. An identity is not something that I have. It is who I am.
Language around disability is complicated and there is currently no universally accepted term. Even the terms that are considered most acceptable like people with disabilities (in North America) and disabled people (in the UK) are not universally accepted by people in those locations. In order to be respectful it is usually inoffensive to default to the most acceptable term based on your location. However, if a person expresses an alternate preference, it is extremely rude and disrespectful to insist that they conform to the dominant preference. Best practice would be to utilize the term that the individual prefers.
The golden rule of disability language has been that the person should come first in phrasing, preceding the condition that disables them. For example, people who have diabetes aren’t “diabetics” in respectful usage but instead are “people with diabetes.” But developmental conditions and those related to the brain are a trickier territory. With a nod to Francis Crick, if your brain is you and you are your brain (with some guidance from your endocrine system and your environmental inputs), then how appropriate or even rational is it to separate the person and the condition? Many people want to say “person with autism,” but to a lot of autistic activists, that phrasing is silly, like saying “Person with Brain.” For them, autism and brain and themselves are all one and the same. Autistic activist Jim Sinclair wrote in 1999 about instead using “identity first” language. The Autistic Self Advocacy Network also features an essay by autistic activist Lydia Brown, elaborating the concept. That doesn’t mean, of course, that every autistic person prefers that phrasing, and it’s always best to go with what any individual with a condition expresses as their preference.
For anyone who has been around Autistic communities, or is Autistic themselves, one of the first things they may notice is the different ways in which we are referred to. Some will say, “has autism/person with autism/people with autism”, whilst others will say, “is [an] Autistic/Autistic person/Autistics”.
These descriptions cover two broad categories of language: identity-first language, and “person-first” language. In my blog (and outside of it), I pretty much entirely refer to myself as “Autistic”, rather than a “person with autism”. Some people wonder why I choose to “label” myself. These people have probably been taught most of their lives that person-first language is the correct way, and that anything otherwise is inherently disrespectful. This could not be further from the truth. I and many other Autistic advocates, particularly those who support the neurodiversity paradigm, use identify-first language. In fact, I, for one, see person-first language as disrespectful, demeaning, and ableist.
Something that I see a lot of well-meaning non-autistic folks say to their Autistic children, siblings, relatives, or friends, is “you are more than autism”, or, “you are not autism, you are still yourself”, or, “don’t let autism define who you are”. Many of these same people insist on using person-first language, because they deem it somehow superior.
Despite that these people mean well, and want the best for their children, these quotes, and “person-first language” are ultimately harmful and damaging: damaging to the child’s self-esteem, giving them the pressure to be “more than autism”, whatever that even means. It is also damaging to the rest of the Autistic community, implying that autism makes a person less. “Person-first language” was not created by Autistics to begin with.
The first claim, that Autism can be separated from the individual, is complete nonsense. Autism is the way our brains are wired. Autism shapes our perception, the way we see the world, as well as how we think and feel. A lot who talk about “curing” autism seem to forget that doing so would completely change who we are as human beings. We would no longer be the same person. Autism is SUCH an integral part of who we are, and to take it away, to take our minds and how we think away, would make us lose our personhood. Back when I used to hate who I was (again, because of people sending a subliminal message that autism is a bad thing), I thought back on what my life would be like if I was non-autistic. I realized that I would not be the same person at all. Sure, I may not have had some of the bad experiences I’ve had, but I would also not love the things I love, believe the things I believe, and I also would not have many of the skills and talents I possess; at least not to the same level. I would be a completely different, foreign person. I wouldn’t even recognize myself.
As many Autistic individuals have experienced, when I stopped hiding myself – when I no longer concealed the fact that I’m Autistic, and when I embraced that part of my identity, that is when I suddenly became a lot more confident in my abilities. I started to like myself, recognizing my strengths, while working on my shortcomings.
If an Autistic person asks me to use person-first language, I will respect their wishes and do so for them. However, we shouldn’t be teaching Autistic kids to distance themselves from their autism. We shouldn’t be telling them they’re “more than autism”. We should be telling them that they’re Autistic, and teach them to be proud of their identity and neurology, and celebrate who they are.
The neurodiversity approach has important implications when it comes to language. A lot of people (typically neurotypical people who are helping or caring for autistic people) support ‘person-first language’ to describe autism. This means referring to someone as a person before stating their disability, a “person with autism”.
You might have noticed that I do not use person-first language. What I use is called ‘identity-first language’. This means referring to autism as an aspect of someone’s identity, an “autistic person”.
People who support person-first language say that no-one should be defined by their disability, that they are a person before they are anything else. It sounds like a noble aim, and they generally have good intentions. The trouble is, the very idea that person-first language is necessary comes as a result of the medical model of disability. It’s bad to define a person by their disability if you think a disability is inherently a bad thing.
Identity-first language accepts that neurological differences and impairments are not inherently positive or negative, they are just aspects of a person’s identity. You wouldn’t dream of saying “a person with homosexuality”, would you? Because that implies that being gay is negative, as well as something that could even theoretically be separated from the person.
The neurodiversity approach says that being autistic is comporable to being gay. It’s an identity, and a natural and value-neutral aspect of human variation. And autistic people should be accepted and accommodated in the same way as gay people. If there are problems associated with being autistic (or being gay), like finding it difficult to communicate (or finding it difficult to get married) – those problems should be accommodated by society.
When you use person-first language, you are saying “Being autistic is entirely and inherently negative”, and “Being autistic makes you less of a person”, and “I have to be reminded that autistic people are human”. Please stop saying those things to us.
After more than 20 years, when I was in my mid-40s, I left Independent Living Center work, partly because I wanted to explore disability culture and activism in other ways, especially online. One of the first things I found was that in the 2010s, the most interesting disabled people out there said that they were “disabled people,” or just “disabled,” and called it “identity first” language. This was in direct opposition to “person first.”
I was relieved. “Disabled” is much smoother to write and say than “person with a disability.”
The more I thought about it, “identity first” language started to again change how I thought about my disabilities. I stopped worrying about whether or not my disabilities “define” me, and started to embrace the fact that like it or not, I am part of a community, a shared identity. I’m disabled. And I do like it.
There are strong links between language about disability and thinking about disability, both in my own life and in the broader disability community. As tiresome as it can be to keep up with all the ways of thinking about disability language, it helps describe and shape who we are. Today, I find myself more comfortable with my disability identity than I have been since childhood, and much more empowered and proud.
If you are not Disabled and you are demanding the use of Person First Language (PFL), you are being ableist.
If you are Disabled and you are demanding that other Disabled people use Person First Language, you are being ableist.
If you are Disabled and want to use Person First Language when referring to yourself, I will respect that. I will also respect your right to demand that other people use Person First Language when referring to you.
I do know the history of PFL. I also know that it was co-opted by non-disabled people who believe they are the authorities in what we should say and how we should identify ourselves. And that is the definition of ableism.
“If you “see the person not the disability” you’re only getting half the picture. Broaden your perspective. You might be surprised by everything you’ve missed. DISABLED. #SayTheWord”
I want to debunk the notion that by using PFL society treats us better. If anything, it helps with the stigmatization of Disabled people. Instead of “seeing” us, society ignores us, we become “voiceless” and “invisible”. There: debunked. But there is more.
Do you, PFL proponent, really see me (only me) and not my disability?
If your answer is yes, you are being ableist because you ignore an important part of me. If you ignore my disability, how are you being an ally – as you claim – and how are you going to support me (and all Disabled people) when we demand to be heard?
If you insist that you will support us, and continue to use PFL, you are being ableist because I (and many others) already said that respecting us means listening to our preferences, instead of demanding that everyone uses a language that we reject. You make it all about you, your preferences, your choices. How is this respecting me (and all Disabled people)?
Acceptable to whom? This is the greatest example of PFL as ableist language. It is silencing. It says non-disabled people are the ones who know what is “better” for Disabled people. It says that we, Disabled people, are non-persons who cannot define ourselves. It makes the choices of non-disabled people for disabled people, “official”. PFL is not acceptable to me, and it is not acceptable to a lot of Disabled people. If you claim to be an ally, if you claim to use PFL because you respect us as people, you are NOT respecting us.
If you insist in using PFL because you don’t want to create “controversy” and defy the ableist society, if you use PFL because it is more comfortable to you, you shouldn’t claim to be an ally or advocate.
I’ll be damned before they separate me from my autism too. I’m autistic. I’ve always been autistic. There has never been a me before autism. All parts of me are autistic as hell and I wouldn’t have it any other way.
My autism doesn’t reduce me at all. My brown skin doesn’t reduce me at all. Ignoring these these parts of me do, because they make me myself. My autism and brown skin affects how I see the world and how the world sees and treats me. Neither my race or my autism are invisible to the world, I promise. They affect everything. Pretending that they do not matter means erasing the reality I am experiencing and that is dangerous to me. Until you see all of me, you do not accept or respect me at all. And if you don’t? Well, then I am likely to lose any interest in you.
Before I found out I was autistic, I wasn’t able to see myself clearly. I already knew myself like no other could, but I didn’t understand myself the way I do now. I didn’t have a community where I actually belonged. These things mean a lot to me, and because of them I am in a better place now. And it’s all because I learnt that I am autistic. Therefore, this label means a lot to me. I never want to be separated from it ever again.
Identity-first language places the disability-related word first in a phrase. People who prefer identity-first language for themselves often argue that their disability is an important part of who they are, or that they wouldn’t be the same person without their disability. For some people, identity-first language is about a shared community, culture, and identity. Identity-first language is also about thinking about disability as a type of diversity instead of something to be ashamed of.
Some communities that use identity-first language are the Autistic, Deaf, and Blind communities. Other people might use “disabled person” instead of “person with disabilities.” Specific people might refer to themselves differently than most members of their communities, so it is a good idea to ask a person how they identify if you are writing about them or introducing them.
Here’s a simple breakdown of IFL and how it’s used:
“Disability” and “disabled” are indicators of culture and identity. Thus, “disabled person” is an accepted term.
Within the Autistic community, IFL is widely preferred and often consciously chosen, because Autism is considered an identity. That is, you’d say “Autistic person” instead of “person with autism.” In this way, being autistic is regarded as a facet of one’s identity – a neurological state of being – and not as a source of shame.
A similar line of thinking is followed by many who are Deaf. While some people identify only as little-“d” deaf (referring to a physical state of being), others capitalize the “D” to indicate being Deaf as a culture and identity. So, using the principles of IFL, one would say “d/Deaf person.
These same concepts do not apply when it comes to the use of a term strictly for its medical definition. For instance, it is never okay to say something such as “Down syndrome person” or “cerebral palsy person.” Here, you’re referring to a person by diagnosis, which is perceived as dehumanizing.
Likewise when it comes to mobility equipment. It’s completely inappropriate to call someone something such as “wheelchair person.” (Sadly, I’ve been called this several times.) Instead, you would say “wheelchair user.”
Identity first: as in disabled person (as opposed to person with a disability) was originally conceived to challenge the medical view of disability and replace it with a socio-cultural view. It wasn’t people’s diagnoses that were the problem, it was society. Society was the main cause of disablement. Saying you were a disabled person was originally not about identity at all it was an acknowledgement that society was the predominant cause of barriers for people with impairments (see my post here for a more in depth breakdown of the social model of disability). It was a way of calling attention to society’s physical and social barriers by tying oppression to the term disablement.
I sincerely doubt that most people who use identity first language are doing so to constantly be saying “hey you are oppressing me” or “hey I’m oppressed” (even though those two statements are likely true). They do it for the same reasons I do. It is a way to reject the idea that disability is a dirty word and to say that disability can be a part of a person’s identity without sacrificing their humanity. It’s a pushback against the stigma associated with disability (for more see this piece by Emily Ladau).
I however, choose to use IFL to directly challenge the bigotry inherent in assuming that I must be separated from my body to be considered human. I most definitely don’t do it to pigeon hole my identity into one label. I am far to complicated for that, just like everyone else.
I continue to believe that people should have the right to self-label and I endeavor to respect people’s personal preferences because we have been labeled by others far to often and it is time for us to take over the conversation about our own lives. I will not however accept the idea that my choice in sentence structure means that I am limiting my identity.
Person first language arose because disabled people were being referred to by demeaning and pejorative terms that had an identity first construction. In some communities, where a preferred identity first term hasn’t arisen, person first is still the preferred construction.
Autistic people, however, have repeatedly expressed a preference for identity first language. For some reason, nonautistic people who think they know better continue to ignore our (loudly and oft-stated) preference. To those people I say, “If you truly believe we’re people, first or otherwise, then listen to what we’re saying and respect our preference.”
Autistic is not a dirty word. When you act like it is, you aren’t helping autistic people. You’re contributing the very stigma that you pretend to abhor.
Undoubtedly, scholarly writers’ use of person-ﬁrst language is well intended. Perhaps, scholarly writers’differential application of person-ﬁrst language to children with disabilities (and most frequent application to children with the most stigmatized disabilities) is also well intended (e.g. to effect positive social change, beginning with the individuals who are most stigmatized, or to protect speciﬁcally individuals who are the most stigmatized). However, the core principle of person-ﬁrst language mandates that persons with disabilities be treated, linguistically, the same way as persons without disabilities. Therefore, rather than avoiding linguistic ‘bias against persons or groups’ on the basis of disability, as the American Medical Association directs scholarly authors to do (2007, p. 412), scholarly authors may actually be imparting such bias. As numerous disability scholars have argued, person-ﬁrst language ‘may have overcorrected to the point of further stigmatizing disability’ (Andrews et al., 2013, p.237). By ‘call[ing] attention to a person as having some type of “marred identity”’ (Vaughan, 2009), person-ﬁrst language may do ‘the exact opposite of what it purports to do’ by signaling ‘shame instead of true equality’ (Jernigan, 2009); it may ‘reinforce the notion that it is “bad” to have a disability’ (La Forge,1991, p. 51)
What can authors, editors, professional organizations, and scholarly journals do to truly reduce linguistic bias? First, all parties can become better educated about the core principle motivating person-ﬁrst language: Everyone is a person ﬁrst, not just children with disabilities (and deﬁnitely not just children with developmental disabilities). As the American Speech Hearing-Language Association suggests, ‘do the same thing for both positive and negative attributes.’ Refer to all persons, both those with and without disabilities, with person-ﬁrstlanguage. Conversely, authors, editors, professional organizations, and scholarly journals could begin to embrace identity-ﬁrst language, both for persons with and without disabilities. Some disability scholars encourage the use of identity-ﬁrst language from a disability rights, equality, and diversity framework. In fact, identifying with a disability is empirically demonstrated to be associated with improved well-being, self-esteem, and quality of life for persons with a wide range of disabilities, which is why identify-ﬁrst language for persons with disabilities is often preferred. At the least, scholarly writing should endeavor to not use linguistic constructions that accentuate rather than attenuate the stigma associated with disabilities.