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Advice
How To Talk About Autism Respectfully
A Field Guide for Journalists, Educators, Doctors and anyone else who wants to know how to better communicate about Autism.
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.
If you take away nothing else from this essay I’d like you to take this: one of the core mottos of our community comes from South African disability rights activism: “Nothing About Us Without Us.” If you can keep those five words in your mind when writing about Autistic people your journalism is going to get a lot better.
If you take two things (and let’s be real, I want you to take more than two things but I’m a pragmatist) it’s that you shouldn’t be writing about Autism if you don’t understand the Double Empathy problem, covered below.
Finally, if this whole thing is overwhelming, let me please ask that before you bail out you scroll to the end and look at the Resources section. I’ve provided links to groups who can help you fact-check and sensitivity-read your work.
After all, you wouldn’t write about gay people without interviewing gay people, right? You wouldn’t support a women’s rights organization run entirely by men, whose policies directly contravene what the women they’re advocating for say they want, I assume? You wouldn’t listen to the caretaker of a speaking but physically disabled person speak over that person in a story about disability, right?
So remember that we have been systemically excluded from agency in our own lives, in small and large ways, for decades. And understand that when we say “Nothing about us without us” we are not expressing a preference, we are setting a boundary in terms of what respectful representation looks like.
Why Should You Listen To Me?
I’m not a doctor or a researcher. I’m a 38 year old Autistic and ADHD software engineer. That means that I have 38 years of lived experience navigating Autistic and ADHD life. No neurotypical expert who has studied autism or ADHD has a better window into the lived experience than I do, and no non-Autistic person can understand or relate to our culture in the ways that I can.
But as I’ll argue repeatedly throughout this essay, autism is not a monolith. I can’t possible speak for all Autistic people, and many will disagree with many of the claims I’m making. Just like any other population we have all sorts of politics, different perspectives and opinions.
I’m not here to present you with an authoritative definition of Autism — I’m here to complicate your narratives in a way that makes room for me and people like me to finally be included in the conversation. It’s my great hope that a lot of what I say just makes sense once you hear it framed this way. You can always find me to ask me questions on Twitter, where I spend all of my free time as .
Context and Introduction
Recently, promoted and talking about marijuana and autism. Some of the language in the promotions was a bit problematic, and suggested to me that Dr. Gupta may not have spoken with many individuals when preparing this work. So, without any real expectation, I tweeted at Dr. Gupta and asked if he would be open to some gentle feedback about how he was framing and discussing Autism.
To my incredible surprise, Dr. Gupta not only responded via DM but added me to the short list of 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. Dr. 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, or PFL (”person with diabetes”) as opposed to identity-first language, or IFL (“diabetic person”) 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 , 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 Dr. 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, Dr. 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 him. More broadly, I hope this piece helps 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 your editors and fellow 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 . Now, not every Autistic person agrees with this claim — the term “disability” is loaded, and its definition is complex. It’s one of those words that is particularly subject to cultural baggage — it means something a bit different in Europe, for instance, than it means in the United States, in ways that can be hard to quantify.
So let me give you this quick pointer: if an autistic person says “” they are correct and you should believe them. If an Autistic person says “autism is a disability” they are also correct, and you should believe them. I release you from the perceived obligation of reconciling these claims — just understand that this is a complex subject and both “autism” and “disability” are hard to define in objective terms.
But I want to be clear about one thing: to call autism a disability is not to call it a pathology. Autism is a valid way of being, and while there may be certain pathologies that only affect Autistic people, it’s not the case that we are .
But that doesn’t mean we aren’t disabled. In American culture at least, it’s important to understand the ways the disabled community is let down by journalists if we want to understand how to do better by Autistic people. So.
To many people, disability — disability sounds like a bad word to people who don’t have to deal with it. In reality, somewhere and 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 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 I wrote on Twitter that polls abled people about some questions relating to disability, and then analyzes their responses.
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. 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 “”.
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 in Autism research in decades.
The Double-Empathy problem conclusively demonstrates that the communication breakdowns that Autistic people experience are not one-sided. Rather it turns out that allistic (non-Autistic) people struggle to understand Autistic people just as much as Autistic people struggle to understand allistic people.
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 taken 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 the problem.
Identity-First Language
You probably learned to refer to disabled people using something called “person-first language”, as Dr. Gupta was. 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 disabilities 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 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 person-first language. Their individual choices must be respected too.
Key Takeaway: Overwhelming Autistic Preference
That said, most Autistic adults on
after
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 will 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 most of us 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 of autism, you end up seeing autism as fundamentally alien and unrelatable. So I translated it. If you’d like to see what the DSM-5 model sounds like when phrased in relatable human language, check out .
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 : 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 ) and many of us have co-occurring conditions ranging from ADHD to epilepsy to learning disabilities. One common form of Autistic erasure is to conflate the Autistic experience of these co-occurring conditions as making someone “more Autistic”. See below to learn more about so-called “Severe Autism”.
One place where novel and interesting research is being done is on the subject of . Basically, Dinah Murray noticed that some brains seem to be optimized for thinking about many things at once and some brains seem to be optimized for concentrating deeply on a single train of thought and posited that many if not most Autistic people (and, interestingly, people with ADHD) seem to be monotropic thinkers in a way that neurotypical people are not.
We may struggle, for instance, with talking about something we find interesting while at the same time paying attention to the interest levels, engagement and social cues of the people we’re talking to, while paying attention to the facial expressions we’re making, while keeping track of time, etc. Those are all separate threads of thought that we have to remember to attend to manually, and each one interrupts something else. (As a result, being Autistic is in a sense an ongoing exercise in applied phenomenology, but that’s a paper for another time...)
All of this is subtle, subjective, and manifests differently depending on the individual. That’s why autism is so hard to define — because its outward manifestations are such a horrible way to try to quantify something so purely subjectively experienced. ? How do we talk about autism in a way that people can relate to?
Well, an interesting and novel form of emergent Neurodivergent literature is the “list of traits”. It’s important to understand that things like autism and ADHD and all these other neurotypes are not objectively measurable phenomena. They’re subjectively experienced ways of being. So unless someone conforms to an obvious cliché, they often have no idea that they’re walking around with a different neurotype until they read something like and see aspects of their own life reflected that they’ve never seen before. Often, they just think they were bad at being a person. That sucks!
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.
Key Takeaway: Trust in Subjective Experience
Nobody can prove their Autism to you. Nobody can take a blood test and say “Yep, Autistic!” Autism is a purely subjective experience that can manifest in many very different ways, and only some of those ways are medically recognized as “autism”. It’s important to understand that unless you are Autistic, you simply Will Not Understand Or Relate To certain Autistic experiences. That’s okay. We don’t understand or relate to all of yours. Embrace the chaos and allow us our truths!
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 , a that makes it difficult to use the for careful coordination in tasks like speaking verbally. 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-occurring 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?
So what if an Autistic person also has Down syndrome? Or, to more accurately reflect the thinking of neurotypical researchers, what if a person with Down syndrome is also Autistic? For the longest time these two were held to be mutually exclusive diagnoses, but now .
Does that make people with both autism and Down syndrome “more Autistic”? Does it make their Down syndrome “more severe”? Or is it a complex intersection of two different conditions that inform many of the same subjective experiences?
It turns out that 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 “”. 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 “” 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 , and that the kid is being traumatized by his inability to be understood.
Note: tics exist. Unintentional behavior exists. But that behavior is always motivated by something even if that something is a neurological compulsion. I’m not saying all behavior is communication — I’m saying it’s a mistake to throw one’s hands up and say “they’re just doing that for no reason” when confronted with a problematic or confusing behavior.
Key Takeaway: Listen to Nonspeakers
Non-speaking Autistic people often (and often ) something called
(augmentative and alternative communication) to communicate, and will complicate every assumption you’ve ever made about how the brain works, about how society works and about how disability works. 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.
Understanding Masking
“Masking” is a set of behaviors and reactions that an Autistic person performs in order to seem “less Autistic” to other people. It involves things like paying attention to and explicitly controlling our facial expressions, tone of voice, what our arms are doing, etc. It means paying attention to the ways other people are able to easily exchange information and catering every interaction to their needs. It means laughing at jokes we don’t find funny and nodding along at stories we don’t understand. It often means, when we’re growing up, reverse-engineering the frankly nonsensical responses of the people around us. It often means a lifetime lived in shame and fear of being “found out” for the horrible offense of being “different”.
What this means in practice is that no, not every Autistic person is obviously Autistic. Many of us are as different from you as can be but do the emotional labor of showing up and “passing” as Neurotypical every day.
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