How To Talk About Autism Respectfully · Public Neurodiversity Support Center
A Field Guide for Journalists, Educators, Doctors and anyone else who wants to know how to better communicate about Autism.
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First, thank you for being here and reading this. I appreciate it more than you probably think. Most people simply don’t take the time to get this stuff right, and if you’re a journalist or media producer who is taking that time then I want to thank you profusely.
Context and Introduction
Recently, Doctor Sanjay Gupta promoted and ran a special on CNN talking about marijuana and Autism. Some of the language in the promotions was a bit problematic, and suggested to me that Doctor Gupta may not have spoken with many actually Autistic individuals when preparing this work. So, without any real expectation, I tweeted at Doctor Gupta and asked if he would be open to some gentle feedback about how he was framing and discussing Autism.
To my incredible surprise, Doctor Gupta not only responded via DM but added me to the 320 people he follows on Twitter. He asked if we could have a phone call, so we did, and it went really well from my perspective. Doctor Gupta shared how much he cares about accurately representing patients the way they want to be represented, making it clear that he learned to use person-first language for instance early in his career when covering Diabetes. But he then did something I’ve honestly never seen — he reflected for a moment and said that he understood why Autism may not be the same kind of thing as Diabetes, and said that it was possible he needed to be educated on the matter.
We talked about PFL vs IFL, about “severe” autism and about how to reason about self-harming behaviors. Throughout the entire conversation he listened carefully and asked incisive questions to make sure he was understanding what I was saying. He made me feel heard and respected, and I appreciate that. I summarize the interaction in this twitter thread, if you’re curious.
What the conversation made me realize is that a lot of folks in the media really want to do better but don’t know how. They have experts they call when they want a blurb about Autism, and none of those experts are actually Autistic. Why would Doctor Gupta listen to me over a distinguished chair of the neurology department at some prestigious university when we disagree?
So there was a lot of pressure on me in that phone call to not only represent the Autistic perspective but to argue as to why it was necessary to seek it out. I did my best, but walked away wishing I’d covered so many more things.
Fortunately, Doctor Gupta promised he’d look over any links I sent him — so I’m drafting this essay partly as a way to provide feedback to Doctor Gupta, but more broadly as a way to help people in the Media understand when they’re being harmful or offensive in the way they talk about us.
If you are in the media and are not Autistic and are reading this to help inform your reporting, I want to thank you. You are doing more work than almost anyone else in your industry to understand the people you are covering. I’d also like to ask that if you find anything in this document educational to please consider sharing it with other journalists. We need Autistic voices to join the chorus of non-Autistic experts you consult when discussing us if we want to see improvement.
So let’s talk about how to talk about Autism respectfully.
Understanding Disability
The first thing you’ll want to do is understand that Autism is a disability. To many people that evokes feelings of revulsion or pity — disability sounds like a bad word to people who don’t have to deal with it. In reality, 25% of human beings are disabled and most humans will spend at least some portion of their life with a disability.
A lot of media coverage of Autism fails in the way that news coverage of all disability fails — it uncritically embraces the revulsion and pity that the author may be feeling. We can feel this when it happens, it’s really obvious. This may make for journalism that abled readers can relate to more easily, but it does so by treating the disabled people as objects of pity and revulsion rather than as full, complex human beings with their own perspectives.
There are a lot of ways to learn more about disability, and one way in may be this thread I wrote on twitter that polls abled people about some questions relating to disability and then analyzes their responses. But my key advice here is really simple:
Key Takeaway: Interview Disabled People
You can mitigate almost all of this (unintentional! understandable!) harm by making sure that your interviews include the actually disabled people, not just the people in their lives. Sometimes this may seem complex — not all Autistic people can speak, for instance, and even if they can they aren’t necessarily treated by caregivers as trusted narrators of their own experiences and you may experience pushback simply for asking for their perspective. It is still your job to seek out authentic and relevant disabled voices for your piece.
Key Takeaway: We Are Not A Monolith
Every disabled person is different. Every experience of disability is unique. It’s often not enough to interview a single disabled source, especially if that’s juxtaposed against a dozen abled sources. That way lies tokenism. The truth is if you want bonus points you can find disagreement within the disabled community, and use that to enrich the complexity of your reporting in a way that doesn’t pick sides but recognizes that these issues aren’t black and white.
The Double-Empathy Problem
There’s a fascinating bit of research by Damian Milton that up-ends a lot of assumptions that a lot of people make about Autism, and it’s called the “Double Empathy Problem”.
Let me put this in no uncertain terms: if you do not understand the Double Empathy problem you have no business writing anything at all about autism for general consumption. This is not because you are a bad person — it’s because you have missed the most important memo in Autism research in decades.
The Double-Empathy problem conclusively demonstrates that the communication breakdowns that Autistic people experience are not one-sided. In other words, it is NOT THE CASE that autistic people have a communication deficit; rather, it seems to be the case that the more two people diverge in terms of the way they experience the world the less able to understand each other they both become.
Because most people in the world are not Autistic it seems “obvious” that Autistic people have a communication problem; what’s really mind-blowing is the realization that it’s not a property of Autism but rather a property of expectation mismatch between Autistic and non-Autistic communicators.
Key Takeaway: It’s Not a Deficit
This means that anyone talking about “deficits” in Autistic communication is blaming Autistic people for a systemic problem that exists squarely in the interplay between Autistic and non-Autistic expectations. We are not broken, and we are not responsible for the fact that our communication style is different. We must be respected as such.
Key Takeaway: Notice the Emotional Labor
The implications here are staggering. It means that Autistic people have accepted the blame for these communication breakdowns wholesale, and we spend our lives trying make up for what we’re told is a deficit on our end. Nobody grants us the same benefit of the doubt and interpretive generosity that we are trained to give others — we have to get it right on the first try or we’re seen as problems.
Identity-First Language
You probably learned to refer to disabled people using something called “person-first language”. This means if you’re referring to someone with diabetes you’ll say “Person with Diabetes”, not “Diabetic Person”. This is valid, and many people with e.g. Diabetes want to be referred to this way.
You should always defer to the individual when referring to them, because some people feel strongly about this. Some people with Diabetes will prefer to be called Diabetics, even if they’re a minority, and their will should be respected too.
In the Autistic community we often feel differently about person-first language. Many of us have a lifetime of trauma from parents, caregivers, teachers, friends and partners trying to separate the “problematic” parts of us from the “real” parts of us. “Person with Autism” is the language of someone who wants to think of the Autistic person in their life as experiencing an external challenge that can be overcome.
We overwhelmingly prefer “Autistic Person”, because it turns out our Autism is not some pathology that interferes with the functioning and expression of the “real” us — it is in fact a core part of our identity, and trying to erase that truth is in fact a way to erase important parts of our experience.
Key Takeaway: Individual Choice Matters
My next “key takeaway” is going to be to tell you that there is overwhelming support for “identity-first language” in the Autistic Community. Please note I am not saying “There is unanimous support”. Plenty of Autistic people DO feel like their Autism is a pathology that they don’t want to identify with, and prefer PFL. Their individual choices must be respected too.
Key Takeaway: Overwhelming Autistic Preference
That said, most Autistic adults on poll after poll say that they prefer “Autistic Person” to “Person with Autism”. So when you write or talk about Autism in your coverage one thing we all look at is whether you chose to use IFL or PFL. It’s not that choosing PFL is that big a deal in the big picture (though some people feel strongly about it!) — it’s that by choosing PFL you are signaling to your readers that you either don’t know or don’t care that most Autistic adults prefer IFL, and we will read your coverage accordingly.
What Is Autism?
One thing you’ll find as you do your research into the Autistic community is that this is actually a pretty difficult question to answer. One way to answer it is to look at what the DSM5 says — this is how American mental health professionals define Autism. But there’s a problem with the DSM-5 criteria — they’re written entirely as a set of observations of behavior of Autistic children. At no point does the DSM go into motivations, and at no point does the DSM suggest that Autism could be anything other than a pathology.
When you read the DSM-5 description of Autism you end up seeing Autism as fundamentally alien and unrelateable. So I translated it. to humanize what they’re saying and turn it into a mirror instead of a weapon.
But note: that’s just my interpretation of their interpretation. That’s not how I’d personally define autism. I’d define it today as something like this: “Different things are obvious to me than are obvious to you.”
When you try to get into a more specific definition you run into a weird problem: almost everything you can say will have some Autistic person responding and saying “Actually the opposite is true for me!” Some autistics are hypersensitive to certain stimuli, some are hyposensitive. Some can’t speak, some don’t stop talking. Some autistics love to socialize, some hate it. Some have high support needs, some don’t have any apparent support needs. “When you’ve met one autistic person you’ve met one autistic person” is the phrase often bandied about.
That doesn’t mean that we don’t share experiences in common. Most of us struggle to relate to neurotypical people in the ways that neurotypical people relate to each other (see Double Empathy, above). Most of us experience emotions extremely intensely. Most of us have some degree of trauma from a lifetime of being misunderstood. Many of us struggle with the inability to name our own feelings (called “alexithymia”) and many of us have co-occuring conditions ranging from ADHD to Epilepsy to Learning Disabilities, and one common form of Autistic erasure is to conflate the Autistic experience of these co-occuring conditions as making someone “more Autistic”. See below to learn more about so-called “Severe Autism”.
Key Takeaway: Assumptions About Autism Don’t Generalize
What this means is that you have to be very careful when making claims about what Autistic people are like. You are probably going to end up referring to some subset of Autistic people in some way that makes a claim that turns out to be wildly false when made against some other subset of Autistic people. Your reporting should reflect this nuance, and you should be open to feedback when you get it wrong.
Key Takeaway: Don’t Just Listen To Me
I really appreciate you taking the time to read this — but I am only one Autistic voice. What I hope you’ll walk away with is an understanding that every Autistic person you interview will give you a unique perspective into what Autism is, how it manifests and what kinds of challenges it’s associated with. Each of these perspectives is as valid as any other.
What About “Severe” Autism?
“Ok,” you may be patiently thinking, “but I’ve just read a lot of words and what you’re describing doesn’t help me understand how to talk about someone who is really autistic. You know, can’t talk, violent, no empathy, etc. You can’t tell me that Autism is just about perceiving things differently, everyone knows there are real problems!”
I hear you, and I understand what you’re getting at. You’ve just interviewed a family of an Autistic kid who can’t speak, maybe self-harms and harms others, and is in a constant state of distress that seems to be getting worse as the kid gets bigger. Soon they’re going to be dangerous to themselves and their caregivers, and nobody really knows what to do about this.
And it is trying your patience to sit here and listen to me tell you that there’s something harmful in telling the story about the obviously struggling family when they are the ones you most clearly relate to. They ARE suffering! And they OBVIOUSLY care about their Autistic kid! So why not tell their story, right?
Well, that’s fair.
But if and when you tell that story you need to be careful about how you do it. For instance, just because an Autistic person can’t speak doesn’t mean that their Autism is “severe” — most frequently it means that they’re dealing with co-occurring apraxia, a neurological condition that makes it difficult to use the fine motor skills required for careful coordination in tasks like speaking words. These people can and do write, and it turns out their inner lives are just as rich and interesting as ours — they just don’t have access to speech.
Does that make them “severely autistic”? Or does that make them Autistic with a co-occuring speech disorder? Do they need support for “severe Autism” or do they need support for their Apraxia?
Similarly, if an Autistic person is also Epileptic that’s going to present in a way where the two conditions inform each other. Seizures may be perceived differently, Autistic hyperfocus may be misinterpreted, etc. In many cases the experience of having both conditions is more challenging than just having one or the other.
Does that make people with both Autism and Epilepsy “more autistic”, or does it make them Autistic with co-occurring Epilepsy? Do they need support for “severe Autism” or do they need support for their Epilepsy?
It turns out that study after study shows that there’s not really a thing you can point to and say “That! That’s Autism, and there can be more or less of it in a person.” That’s not how it works. Some people are Autistic, and that means that different things are obvious to them, and that’s that.
Some of those people also have sometimes truly debilitating co-occurring conditions. But that’s no different from any other population, right?
So let’s go back to our example above, the family supporting the “severely autistic” child. Is the child “severely autistic”, or does the child have additional unidentified support needs and co-occurring conditions? Are you absolutely certain? If not, please refrain from using phrases like “severe Autism” because they conflate and erase a lot of complexity and nuance and serve ultimately to create a category of Autistic people who are simply written off as irrational and subhuman.
Finally, there is no “severe Autism” in the diagnostic criteria, though some diagnosticians insist on using “functioning levels” as a measure for this. A “high functioning” Autistic is someone like me, who doesn’t have many obvious support needs and who you wouldn’t necessarily recognize as Autistic if you met me. We used to diagnose these people with “Asperger’s Syndrome”. A “Low functioning” autistic is someone like the example kid we’re discussing — they have high support needs and probably some co-occurring conditions.
But both of those terms completely erase the subjective experience of the individual. I have days where I am “low functioning” by any meaningful definition (but peoples’ expectations of me don’t change), and that kid has days where he’s “high functioning” (but probably not recognized as such).
So in the Autistic community we don’t use labels like “High Functioning” or “Low Functioning”, we prefer to speak in terms of “Current Support Needs” which acknowledges that sometimes we do need support, acknowledges that our support needs can be variable, and doesn’t define us or our autism in a deficit-centered way.
Key Takeaway: There Is No “Severe” Autism
Using the phrase “severe autism” may do what you intend in terms of conjuring to the public eye a figure of an Autistic person struggling with a number of co-occurring conditions. But use of this phrase conflates those conditions with Autism itself in a way that erases a lot of meaningful and nuanced subjective experience.
Key Takeaway: No Behavior is Unmotivated
That kid hitting himself and others is in severe distress. His behavior is not irrational and is not malicious — he is not trying to cause harm. He is trying to regulate, and probably trying to articulate that he is in distress in the only way he knows how. When we isolate the distressing behavior and dismiss the motivation as mysterious and unknowable we are damning that child to misunderstanding and isolation. The solution here is to recognize that this behavior is motivated, and that the kid is being traumatized by his inability to be understood.
Key Takeaway: Listen to Nonspeakers
Non-speaking Autistic people will complicate every assumption you’ve ever made about how the brain works, about how society works and about how disability works. Their voices have to be actively sought out, and they often need help being heard — but they’re there, and if you seek them out you will revolutionize journalistic practice around this whole topic.
Let’s Talk About Empathy
Everyone knows Autistic people lack empathy, right?
This is not only wrong, it’s so painfully and ironically wrong that it’s almost funny. But before I get into why it’s a particularly bad example of a claim that doesn’t generalize I want to acknowledge that there ARE Autistic people — just like there are non-Autistic people — who don’t seem to feel empathy.
Those are still full human beings and still deserving of your love, respect and acceptance. They are not broken, they are who they were born to be and we must make room for them.
But most Autistic people aren’t like this. Most Autistic people seem to suffer from hyperempathy, in fact — we’re the people you’ll see crying when a stuffed animal is “hurt”, making emotional farewells to inanimate objects on trash day, and going out of our way to understand and accommodate the needs of the people around us. Most of us have experienced an extreme lack of empathy from the people around us for our whole lives, and we don’t want anyone else to ever experience that.
So why do we have a reputation as lacking empathy? Because we show empathy differently than Neurotypical people do, and that has been misunderstood by medical professionals and passed off as truth for decades now. We talked about the Double Empathy problem above, but let’s focus more on the ways that that manifests and why so many people think Autistic people lack empathy.
When you tell me a story about something bad that happened to you I will most likely respond by telling you a story of the time something similar happened to me. If you are also Autistic you will understand that this is me showing you that I understand what you’re going through and can relate to your challenges. But if you’re neurotypical you will likely interpret this as me making the whole thing “about me”; you may assume I’m choosing to decenter you to cater to some narcissistic tendency I have to make everything center on me.
Further: a lot of us seem to have an issue where we “absorb” the emotions of the people around us. If you are feeling angry and you engage with me I will start feeling angry. If you are sad I will start feeling sad. If you are joyful I will start feeling joy. It is hilarious to me that this is considered a “lack” of empathy.
Do you see how this is a fundamental misunderstanding? Autistic people express different things — including empathy!! — in Autistic ways. Because of this, and because the non-Autistic people responsible for documenting and writing about us don’t understand it, we’ve been accused of lacking empathy. Countless undiagnosed hyper-empathic Autistic people think “I have way too much empathy to be Autistic!” and that’s 100% because of how Autistic empathy is talked about.
Key Takeaway: Autistic Expression
When writing about Autistic people be open to the idea that you are misunderstanding their empathy because they aren’t expressing it in the way you would. Pay attention to how much effort the Autistic people you’re speaking to, for instance, put into making sure you understand them. They are doing SO MUCH emotional labor for you, translating their subjective realities into expressions they hope will allow you to understand them. Autistic communication is rooted in empathy, because without it we cannot make ourselves understood.
Key Takeaway: Experts Are Frequently Wrong
This should set off a few red flags for you. Anyone you’re interviewing that tells you that Autistic people don’t feel empathy, for instance, simply doesn’t know what they’re talking about. But entire academic subfields have spun up around misunderstandings of what Autism is and what Autistic people experience, and these subfields are all run by non-Autistic individuals doing their best to interpret without asking questions. It’s common to discover that everyone from Steven “Autistic People are somewhere between robots and chimpanzees” Pinker to Simon “Autism is just an extreme form of masculinity” Baron-Cohen is actually completely fully of shit when they talk about this stuff.
Nothing About Us Without Us
If you’ve read this far thank you very much. I hope I’ve provided enough information here to at least complicate your sense of what Autism is, and to help you understand the ways in which reductive coverage of Autistic people does more harm than good. We are a complex invisible diaspora of extremes, and anything you say about one of us will be false for another.
If there’s one key takeaway I want you to have from this article it’s this: that our community’s slogan, “Nothing About Us Without Us”, is not only a concise summary of our policy positions but a commitment to self-determination with or without the help of the people around us.
We need allies in this fight, and one easy way to be an ally is to center Autistic people in your reporting when that’s relevant. We aren’t objects of pity, we aren’t challenges sent from heaven to test our parents, we aren’t serial killers waiting to break. We are mostly patient, tired, misunderstood and struggling.
Thank you.
