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 coming to you now as an ambassador one such perspective — we call ourselves the
, and while I can’t even claim to speak for the entire NDM I’m going to do my best to share our perspectives on Autism and how to discuss it.
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
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 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. 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 (”person with diabetes”, as opposed to “identity-first language” which would be “diabetic person”) 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
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 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.
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, and in American culture at least it’s important to understand the ways in which the disabled community is let down by journalists if we want to understand how to do better by Autistic people. So.
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. 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 “
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 Double-Empathy problem conclusively demonstrates that the communication breakdowns that Autistic people experience are not one-sided. Rather it turns out that allistic (not 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 problems.
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
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.
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 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.
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-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”.
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, etc all at the same time, 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, they’re not objectively measurable phenomena they’re subjectively experienced ways of being. So unless someone conforms to an obvious cliche 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
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-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 accurate 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?
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.
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.
“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.
A common thing that strangers may say to me if I disclose to them is “You don’t look Autistic!” Now, they think they are being kind — they’re telling me “I never would have known that there was something wrong with you!” and, like, that’s not... exactly the compliment they think it is, right?
Key Takeaway: Anyone Could Be Autistic
The fact is we come in all shapes and colors and you may be surprised which people in your life are secretly Autistic — maybe even secretly from themselves. We know that most Autistic people are
— wouldn’t it be amazing if the piece of journalism YOU wrote helped introduce someone to themself in a way that allowed them to recognize themselves as Autistic for the first time? That’s what we’re working towards, here!
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. There’s
— 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.
Finally, hyperempathy can be exhausting and excruciating. When you can’t walk past the TV news without an emotional breakdown you eventually learn to start tuning out those things that don’t directly impact you. As a result you may start to appear “uncaring” when the actuality is that you’re protecting yourself from the very real problem of caring too much.
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
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 an Extreme Male Brain” Baron-Cohen is actually completely full of shit when they talk about this stuff.
.There are Autistic people of every race, though diagnosis often privileges white people. There are Autistic people of every gender, and in fact Autistic people are far more likely to be trans or otherwise gender nonconforming than non-Autistic people. There are Autistic people of every sexual orientation, every class, every nationality and every religion.
All of these categories are social constructs. That does not mean that they’re not real — hell, Hydrogen is a social construct — but it does mean that the way we relate to these concepts may be different than you expect.
What that means is that it’s important to understand the concept of
as developed by Black Feminists over the past few decades. Intersectionality is the acknowledgement that different axes of oppression compound, confound and inform each other in ways that give rise to emergent complexity and unique expression of identity. A Black man and a Black woman are going to have very different experiences, and when you include things like sexuality and disability into the mix it turns out that sussing out identity gets pretty complicated.
All of this holds when we add Autism. To be Autistic and Male is to be similar in some ways and different in other ways than someone who is Neurotypical and Male: even our very basic experience of very basic categories is complicated and informed by our neurodiversity. Don’t even get me started on how this
. If your journalism talks to five Autistic adults you’re way ahead of the curve, but if they’re all white then you’re falling behind in another way that’s just as important. We all need to be heard and recognized as fully human. Bonus points if you ask about how many undiagnosed Autistic people of color are currently sitting in American prison cells.
Key Takeaway: Neuroqueerness
Nick Walker argues persuasively that to be neurodivergent is in some sense to be queer. She frames this using the word “Neuroqueer” and defines what she means in
. Some Autistic people go farther, and claim that because of the way Autism intersects with things like Gender and Sexuality that to be Autistic is intrinsically to be queer; this site hosts an essay making that very case, here:
; nobody is making this up, but not everyone will be believed.
Key Takeaway: We Are Everywhere
Every community, every demographic, has Autistic members. Remember that we exist everywhere, and we’re reading what you’re writing. It’s easy to think of us as “other”, as a separate category distinct from whatever group you’re writing about; instead, how does your writing change if you recognize that there are Autistic people present in the demographic you’re covering?
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.
And here’s where that gets complicated, because as you read this whole essay you were getting one relatively privileged Autistic person’s perspective on Autism. I’m a mostly-cis mostly-straight white dude with a high paying tech job and a lot of resources to spend on healing, recovering and processing my own mental health. But I can’t possibly speak for all Autistic people, and if you’ve been reading along you’ll understand why.
The fact is that there exist Autistic people who would disagree with any given claim I made in this article. They exist, and while I obviously disagree with them it is a core value of ours that they be acknowledged and included in the conversation so that they can represent themselves.
This only works when we stop trying to find the One Right Way to think and talk about Autism and instead accept that it’s a complex multifaceted dynamic system that can sustain many interpretations, and that a part of supporting the Autistic people around you is supporting those that you disagree with, too. And that’s complex and takes a long time to sit with.
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.
This document was originally created on December 19, 2021. It lives in a constant state of revision, so there’s no real “final” draft. If you like it, please check out my other
list for tracking your favorite Neurodivergent twitter accounts.
More importantly, though! Here are some links to Autistic-run Autism organizations. If and when you write about Autism in major media, if and when you express opinions about Autism in a medical or professional context, if and when you teach about Autism, please make sure that your perspective is informed by fact-checking with these people.
This is not optional, this is the right thing to do.
This is a blog run for and by Autistic people. The editor goes out of her way to make sure that a diverse range of voices are heard, and this is a great place to go be exposed to perspectives you may not find on your own.
I want to draw your attention to something, here. I’m giving you a list of organizations to look at for resources about Autism and there are some conspicuous absences. You’ve probably never heard of Neuroclastic, but you’re probably wondering why Autism Speaks isn’t on this list, or NEXT for Autism, or Autistica — those you’ve probably heard about, right?
I hope, after reading this essay, you can understand the frustration of the Autistic community at the very idea that the loudest voice in most discussions of Autism at the policy, communication and research level is a group of non-Autistic people who called themselves, of all things, “Autism Speaks”. Not only is their entire framing of Autism pathologizing and negative but they promote a form of behavioral control of Autistic children called “ABA”. Many Autistic adults have said that going through ABA gave them PTSD, and it’s worth exploring why ABA is so well-established and highly promoted — but that’s beyond the scope of this document.
If you’re familiar with the Autistic community you may also notice that ASAN is not listed. ASAN has done outstanding work, but pending further community engagement around accountability and transparency I can’t currently recommend them at the expense of other orgs. They’re currently expanding their leadership to include more people of color and are working on addressing some major critical feedback they’ve received. Once addressed I’ll reconsider adding them to this list - but in the interest of inclusivity, if you are just discovering this space you should know that ASAN exists and is a leader in the Autistic community.
I’m so glad to have read this, it’s a wonderful and even-handed explanation of so much. Thank you for your work
I am a teacher educator and have friends among the ASD and deaf community who have always preferred IFL, but when I used their preferred terms, my colleagues publicly clobbered me for my insensitivity. To me the PFL language casts neuro-atypicality in a medical model “disease” stance, and as someone who teaches about human variability as by definition NORMAL (hence the “normal distribution”), this seems to pathologize anything outside of the 68% around the mean. Thank you!
Thank you so much for this! As a recently discovered autistic, I have a lot to learn about myself and this community
I teach a course in neurodiversity to undergraduate students at my university and I am always looking for good, informative pieces to share that are written by neurodivergent individuals. I try to practice the preach! I am neurotypical so I absolutely need them to hear the neurodivergent voice...thank you for this great piece.
This. is. Amazing. Thank you.
This is great! I will be using it in my advocacy efforts. If I may make a couple of suggestions: it would be great to start by contrasting the neurodiversity paradigm vs. the medical model (ie. neurotype vs. disorder) a bit more explicitly and also to include discussion about the social vs. medical models of disability. That would make it a one stop primer for me to share with others!
Hi, Neuropeculiar APS is another Autistic-run Autism organizations. We are based in Italy.
So happy to have read this article, and have watery eyes reading the last few disclaimers below the references. Through learning from 1 autistic person’s perspective, I’ve already learned so much, but have a long way to go and will be applying these takeaways in my daily life, even though I’m not a member of the media.
Thanks for this. I have 2 Autistic sons and one speaks, the other doesn’t. It’s hard to explain the variety in ASD to others and it’s often hard for even parents of ASD kids to speak respectfully at times. This is a nice beginning to what I would hope to be a much longer public conversation.
Wow, what an extensive and thoughtful article. A bit long, but well structured. I most certainly have to bookmark it for later reference!
Thanks for taking the time to write this article. I found it eye-opening in a very helpful way.
This is one of the most well thought out and comprehensive Autism article I’ve ever read probably because it’s actually written by an autistic person LOL. Great work I wish I had this when I wasn’t sure if I was autistic I would’ve been like OK this info says yes sksksksks. Just well written good job!!
I appreciate so much about this piece! I wanted to foremost thank you for your powerful and important words. I shared this with all of my colleagues. I also wanted to offer an alternative perspective to your brief comments on applied behavior analysis (ABA). Despite the pervasive quality control issues in the field, as well as a continuing need to evolve in response to the concerns you noted, at the core of the philosophy of ABA is the notion that what society deems as “problem” behavior is actually adaptive for the individual. “Problem behavior” communicates the individual’s (often basic) needs. Your section on motivation reminded me a lot of this philosophy. Over the past four decades, behavior analysts have developed methods to safely understand the motivation behind dangerous problem behaviors, even when a person cannot communicate their needs with verbal language. Behavior analysts use this information to develop individualized programs that teach new skills to both the autistic individual and their caregivers that will help meet the autistic individuals’ needs. Sometimes the focus is more so on changing the caregivers’ behavior (e.g., teaching the caregiver how to support the autistic individual better in school activities or how to modify the activities to make them more enjoyable for the autistic individual) and sometimes the focus is on building outlets of communication for the autistic individual. The primary goal is to improve the autistic individuals’ quality of life and wellbeing. Behavior analysts have also developed methods to understand people’s preferences, even when the person cannot vocally communicate them. Individualized choice and preference are the heartbeat of applied behavior analysis and should be two key components in every behavioral intervention. Again, I recognize that the current state of behavior analytic practice is often not reflective of some of these core philosophies and gold-standard methodologies, but many behavior analysts are working hard to fix that! As one of them, I want to thank you again for sharing your insights and expertise, and for being open to continued conversations like the one you had with Dr. Gupta. I am sure, like Dr. Gupta, I will continue to make mistakes (I likely have made some in this comment, and I welcome everyone’s feedback); I only hope that people in my life are as willing as you are to continue these important conversations and strive for mutual growth!
I really appreciate this article. I’m a 55 year old male and now realize I’m autistic. My wife and I have seemed to be living in different universes for 25 years. The one thing that resonates with me PROFOUNDLY, is the concept of “what is obvious to me is not the same as what is obvious to you.” That’s it. That summarizes the whole shit! Thank you. Done deal.
This is absolutely brilliant, I have learned so much from this!
Thank you from a University professor.
As the aunt of an autistic nephew this is invaluable. I also saw a few pieces of myself here!
I am profoundly appreciative and moved by this essay and will do whatever I can to share it. I work at Evergreen Goodwill, a regional group of retail stores and job training centers in central and north Puget Sound. We do a monthly Equity Media series for Job Training Center Staffand to do a deeper dive into equity issues to become more informed about our students, staff and ourselves. Happily, our March discussion topic is “Disability” and with your permission, I’d like to share this essay. Thank you so much for doing this hard work.
Anon A truly comprehensive piece. As an actually autistic, and as an editor, and as a person who truly loves bad language in everyday use, the only editorial recommendation I’d make is to excise those two blue words in this one. The piece is creditable, and also personable enough without them.
I'm a grandmother of a 12-year-old autistic boy and a 10-year-old autistic and Downs boy in the same family. The older boy is self-harming and sometimes aggressive. I'm concerned these tendencies will worsen as he is beginning puberty. His mom tries to recognize triggers for his behavior. No one knows how to help, and she is continually trying to find a way to deal with their future. The younger child is nonverbal, but fortunately more docile. I appreciate your paper, since it opens my eyes further to understand toe complexities surrounding their situations. No easy answers. Thank you.
Excellent and very insightful article!!!
Thank you - I am a NT parent of an autistic child so this helps a lot in helping me learn how to communicate better with him
Incredible article. Opened my eyes to the “real world” of autism and non-autism relationship. This helps me understand and relate to my granddaughter who was recently diagnosed with ASD better. I totally relate to the perception of being a disabled person and yet I do not see myself as a disabled person. It all makes perfect sense for me.
Thank you for the time and thought behind this important piece you have written. My son is autistic and so much of what you have written rings true. There is such lack of empathy for Autistic persons because Autism is not understood. And the trauma in childhood and adolescence is extreme. My other son’s friends have told him, “Your brother seems fine!” Okay. So much wrong with that. But, my point here is that as a big brother, my older son wanted to explode with trying to express how hard it is for his younger brother to navigate a social situation and how exhausting it is to “seem fine.” As far as extreme empathy— you hit this right on. I have had talks with my son about how that paper he threw away is okay— try not to feel bad that it is thrown away. He is also the only person in his grade out there buying a sympathy card for the kid whose dog died. So, from my view , the hyper empathy is a gift for people as well as something that can cause so much pain. Anyway, I just want to thank you for the time you took to write this. So well stated.
Thank you for sharing your thoughts in this article. It was very meaningful to me. I have an autistic teen son who means the world to me and also work with autistic children as an occupational therapist. I was also taught "person first language" in my graduate program and can now see the complexities of how some may not consider the concept relevant with autism. I have a long time of feeling passionate about advocating and helping others understand neurodiversity and autism. However, I see my limitations in truly understanding the experience from my neurotypical brain. The article was very insightful and gave me a lot to think about as I communicate with my son, and other children and parents and the community. Thank you again