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How to talk about autism respectfully
- PaulHoule 5y agoI like this headline: "Key Takeaway: No Behavior is Unmotivated" I was looking at a circa 1980 conference proceeding on vandalism which had a quote from this notorious character https://en.wikipedia.org/wiki/Philip_Zimbardo https://en.wikipedia.org/wiki/Philip_Zimbardo to the effect that "vandalism is unmotivated" because vandals don't obviously add to their utility function the way thieves do. The response was "No behavior is unmotivated." Also in general I think the inability of neurotypicals to have empathy for autists is much more profound than the converse. I remember as a kid on the schoolyard playing with autistic kids whose I could relate to a lot more easier than bullies who would torment me. Looking back I think "what's so strange about kids running around and making noises?"
- jmcgough 5y agounrelated to the topic, but it's always amazed me that Zimbardo made his career on an unethical study that would never pass a review board now (the Stanford Prison experiment)
- neltnerb 5y agoWow, this is amazingly well written. I have a disability (but not autism) and can't help but be like... well, yeah, unquestionably correct. I would go out on a fairly safe limb and say that this problem generalizes to most disabilities pretty well. Even in the way that I use the word "disability" there with the same caution and intent of the author, it's more complicated than that. But also in some ways more general I suspect.
- NotVerstappen 5y agoWhile I agree that there is some potentially useful insight buried in here, I disagree stongly on "amazingly well written" - the signal-to-noise ratio was dreadful.
- mbilokonsky 5y agoThank you so much, I agree with you. That's why I started with disability as the first subject -- because "Nothing About Us Without Us" isn't just about Autism, it comes from the disabled community in general. It's 100% true that a lot of what I've written generalizes to many other disabilities.
- blueflow 5y agoI have distaste for the author speaking on behalf of autistic people. Also i have a distaste of the author listing their "disabilities" in their twitter bio. Its probably some kind of US identity politics thing. I don't think defining yourself via your diagnoses is socially acceptale where i live.
- andybak 5y agoI'm not sure where you're from. I'm from the UK and it feels more generational than location based. And "not socially acceptable" doesn't feel like the right way to describe it. More that people younger than me are comfortable with things that feel like over-sharing to me.
- blueflow 5y agoGermany. I meant it like, "not socially acceptable" = being made fun of. Its seen like an excuse to be special even if you have no skills to demonstrate.
- jnovek 5y agoI am a disabled person (U.S. based). I've had trouble holding jobs over the last two years. I can't reliably spend 40 hours a week in front of a desk. Hypothetically, an employer is required to provide a disabled individual with "reasonable accommodations" to complete their work tasks in the U.S., but because the only recourse a disabled individual has is legal in many cases companies are willing to risk it as they have far more legal resources than their employees. I appreciate very much when a disabled individual speaks openly about their disability. It puts social pressure on everyone to appropriately accommodate the needs of their disabled employees. For me, it means that someday I might be treated with dignity and respect in my work again, like I was before I was disabled.
- NotVerstappen 5y agoI think like many of the current wave of "illiberal left" trends, it is a function of both space and time. I suppose the UK adopts US woke ideas because young people here are less likely to have religious conservative views than the EU average - reserving their prejudice for simple xenophobia.
- rndmind 5y ago
- AussieWog93 5y agoI have to agree with blueflow, here: this type of activism is really irksome. Honestly, I can't think of anything more counterproductive than Aspies trying to create more rules and further complicate discourse... He hasn't been chosen by us, doesn't represent our views, and yet still feels like he can talk on our behalf. I've heard the same thing from trans people before. We need to stop listening to these people.
- rhn_mk1 5y agoAfter reading this, I'm even more confused about what autism is than before. Sure, my current knowledge may be wrong, but tearing down any generalizations "if you met one person with autism, you met one person with autism" just makes it impossible to define as a thing separate from non-autism. Yet the author tries to create generalizations later? Autistic people experience the world in a different way than non-autistic people. Okay, let's let this inconsistency slide. So to what extent? Are they trying to say that all non-autistic people perceive the world exactly the same way? Nonsense, so where's the line? From the article, there's no line: some are like this, some are the opposite. I feel the points about the form of communication are valid, but the ones describing the actual subject of communication are not helping.
- xmprt 5y ago> Autistic people experience the world in a different way than non-autistic people I don't think this is a generalization. In fact, it is the opposite of a generalization. > all non-autistic people perceive the world exactly the same way They aren't trying to say this. The first statement doesn't imply the second.
- rhn_mk1 5y ago> I don't think this is a generalization. In fact, it is the opposite of a generalization. Maybe "generalization" is the wrong word, but it's still a way to carve out a niche, which was previously denied. > The first statement doesn't imply the second. True, but this leaves us with "where is the line?" as the crucial but unanswered question.
- wombatmobile 5y agoI had difficulty parsing the "Double Empathy Problem" because it's written with so much meta commentary and qualifiers. So what is the Double Empathy Problem? I'm still not sure what the article says after reading it twice. Is it something like this? The limitation of empathy, for those who understand why it is useful to practice it, and who try to practice it, is that unless you know how the other person thinks, just putting yourself in their shoes won't help. You also have to be able to model how their thoughts will go - not how your thoughts would go if you were in their situation. So, if you want to treat people with autism empathically, first, investigate and learn how to model how they think. Once you have some model of that, you can practice empathy with them. If you try to practice empathy before you have a model, it won't be empathy - it will be misunderstanding.
- itsdrewmiller 5y agoI had to google around a bit to figure this out, too - I think it's more that in the same way autistic people often have trouble empathizing with others, neurotypical folks have trouble empathizing with them. That's the "double" part - recognizing it's a two-way street rather than just a deficiency/obligation of the autistic individual.
- NotVerstappen 5y agoThat was my take-away from the "double empathy problem" too - and I agree that the point was hard to extract from the text.
- Twisol 5y agoYes, something like that! Maybe put differently, we all interact with people expecting those interactions to go a certain way. When they don't go as we expected, we often see it as a failing either of the speaker or of the listener; and complicating things, we trade those two roles constantly during any interaction. The "double empathy problem" simply says that the fault doesn't have to be assigned strictly to one party, just as how it's unproductive to blame the intern who deleted the production database by accident. There's a systemic failing that should be understood instead. Complicating matters is that folks with a disability are often pathologized, as the article notes, so it's far more likely that any fault will be assigned to them -- by both parties! (Internalized guilt is a hell of its own.)
- deleted 5y ago[deleted]
- RcouF1uZ4gsC 5y ago> 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. If you are a software engineer and are able to blog, you are really at the high spectrum of functioning. My guess is that the gulf between the author and people with autism who are less functional is greater than between a "neurotypical" and the author. Neurotypical and autism isn't binary. It is a spectrum and even within autism, there is a huge spectrum. The author speaking on behalf of all people with autism seems not that much different than "neurotypical" people speaking on behalf of people with autism.
- mbilokonsky 5y ago> My guess is that the gulf between the author and people with autism who are less functional is greater than between a "neurotypical" and the author. Your guess is wrong. Research shows that people like me still die before 60 from heart attacks and suicide, largely because people like you make assumptions about what may or may not be true about me and then try to hold us accountable to those assumptions. Further: there is no "high end" of the spectrum, that's not what spectrum means. You're thinking of a gradient, which measures a specific value from 0 to 100 in some normalized sense. A Spectrum is a gradient of gradients, and "Autism Spectrum" does not refer to the range of "severity" (which as established does not actually exist) but rather to the diversity of presentations.
- slibhb 5y agoThe attempt to transform autistic people into a marginalized identity group is incredibly off-putting. The point of the article is for the author to assert his authority based on nothing but his proclaimed identity. He gets to lecture us (or "journalists") about the "right way" to think and write about his identity group. What could be more "neurotypical" than this kind of power game? Also some new tortured neologisms are introduced ("neuroqueerness").
- mbilokonsky 5y agoAutistic people die before age 60, are subjected to electrical shocks in the US that are illegal to use on dogs, and have their entire subjective experience erased in the name of conversion therapies that cause CPTSD but are fully covered by insurance. If that doesn't describe a marginalized identity group I'm not sure that the phrase has any meaning?
- throwaway93754 5y agoFor some context: there is an unfortunate phenomenon where discussions between parents of autistic children and adult autistics tend to turn very acrimonious. I am a parent of a child with, for lack of a better term, "severe" autism, but I hope I can provide a respectful viewpoint. One of the thoughts that gives me the most anxiety is who will take care of my son when I'm gone. Who will make sure his needs are being met and that he's not being abused, or hurting himself. The unfortunate reality is that services for people like my son are desperately missing. It's very easy for politicians to cut funding for services even as the need for them quickly grows. It's discriminatory. As a parent, I feel a deep responsibility to advocate for increasing these services, for doing everything I can to hold the decision makers to account. And so I will unapologetically fight for my son until my last breath. And I also understand and care about the need to be respectful. But the reality is that, the careful language advocated for here is at odds with trying to clearly convey how dire the situation is for people like my son to people who don't have experience in this area. Also, these public forums often devolve into infighting, muddying the message even more.
- wrnr 5y ago
- enchiridion 5y agoThis kind of comment doesn’t fly here. Judging by you account age I think you know that. I take your point, but there are nicer and more constructive ways to put it.
- wonnage 5y agoI think this guy needs a time-out (and/or permanent ban): https://news.ycombinator.com/item?id=29554182 https://news.ycombinator.com/item?id=29554182
- CoastalCoder 5y agoIIUC, you're saying that we can't express strong feelings without acrimony. Is that correct? I've been impressed sometimes by examples of good diplomacy in HN threads. I've found them instructive for my own conversational skills.
- stathibus 5y agoUnfortunately clear that most people commenting did not read the article.
- mbilokonsky 5y agoSeems that way, huh?
- DarylZero 5y agoThat's always the case.
- harryruhr 5y agoPerson with Asperger's here. The one thing that bothers me more than neurotypical people writing about autism without actually speaking with people with autism are people with autism who think that they can speak for the "community" The first rule is always "if you have met one person with autism, you've met one person with autism". There is no "us" in the sense that we have something in common which distingushes us from all neurotypical people. So I don't agree with large parts of this article. E.g I prefer person-first language, but that's not because I think, that autism is a pathology. I do identify myself with autism, but I don't think that this is the largest aspect of my personality, so I don't like to be called "autist" (as much as I don't want to be called "bigfoot" because I have 13 shoe size). Yes, the author says, that there are people with autism who might disagree. But if he knows this, why is he talking about "we" and "us" all the time?
- CoastalCoder 5y ago> There is no "us" in the sense that we have something in common which distingushes us from all neurotypical people. Would you mind expanding on that a bit? I'm probably misunderstanding, but it seems to me that by definition an attribute like "on the Asperger spectrum" is the kind of partitioning you're saying doesn't exist.
- harryruhr 5y agoOf course there is the autism spectrum. But it is a spectrum, it is not something that goes from mild to severe or where people have every symptom on the list in a certain degree. The spectrum is diverse - so it is wrong to make any general assumption about it. (Note: I am not talking about "autism spectrum disorder" diagnosis according to DSM V or ICD-11. These diagnoses have a defined set of required symptoms. But the spectrum is far bigger than that).
- plantataco 5y ago> The first rule is always "if you have met one person with autism, you've met one person with autism" https://en.wikipedia.org/wiki/Anna_Karenina_principle https://en.wikipedia.org/wiki/Anna_Karenina_principle
- jcims 5y agoI have a question that's probably related to the Double Empathy Problem that I've never really been comfortable asking, but this seems like as good a place as any. Anyone that's been on HN or Reddit or Twitter or Facebook or any other place on the internet where strangers interact has likely seen a situation where people are arguing about something but clearly talking right past each other. Most of the time when I care to pay attention it's clearly pride or stubbornness or rage blindness that's causing the disconnect. However, there are also times where I can't make sense of it at all, either the person is laser focused on a small detail or tracking their own issue through an unrelated conversation or any other number of confusing interactions that tend to agitate people immensely. Embarrassingly it just occurred to me last year that there are millions of autistic folks that use the Internet, and it's entirely possible that these disconnects are just an impedance mismatch in how our minds work. So, after all of that, I think my question is if there is any tactful way to approach the question of whether or not someone on the internet is autistic. I'm pretty sure the answer is 'no' and that we just need to remember that's a possibility and to have some grace online.
- nicoburns 5y agoYou should look into the MBTI types, and specifically the "cognitive functions". A lot of people say they are nonsense, but I think they are valuable (and likely represent an underlying cognitive difference) precisely they explain these kind of situations in way that nothing else. The key thesis of the MBTI is that there is not 1 "standard" way in which we think, but 8 different ones. You could also use the more general theory that people think differently to each other to explain this scenario. But such a theory is much less practical in terms of resolving the disputes, whereas the MBTI is excellent at this. This link isn't ideal, but it's a decent considering it's concise and freely available on the internet https://personalityjunkie.com/functions-ni-ti-fi-si-ne-te-fe-se/ https://personalityjunkie.com/functions-ni-ti-fi-si-ne-te-fe...
- jcims 5y agoOK so just thinking about it this way made me realize it doesn't matter if the person is autistic or not, the problem is the communication breakdown, not the underlying cause of it. Saying 'I'm sorry but I don't think we're having the same conversation, ...' and then resetting context might be all it takes. It certainly would be less horrifically offensive haha.
- mbilokonsky 5y agoHi! I'm the author of this piece, and I really appreciate the feedback I'm seeing from some folks. Thank you for helping me make this the best essay it can be, this is obviously important to me. I see and understand that there are some other autistic folks commenting. That's awesome! You should definitely also listen to the people who disagree with me, after all that was a central theme of the article. But do try to make sure that they're disagreeing -- I see a handful of folks here angrily trying to insist that I'm saying the opposite of what I said, and I think some reflection might be helpful. My overall point is that nobody can speak for all of us, but right now the ONLY people speaking for ANY of us are neurotypical, and that's a problem. Thanks for the discussion! :)
- NylaTheWolf 5y agoUnfortunately I don't have the time to read the full thing, but the part about ""severe autism"" was very insightful! Thank you for writing it! I'll be sure to check out the rest later :) also, hello fellow ADHD person!
- blueflow 5y ago
- DarylZero 5y ago> On the other hand, you also list your pronouns and BLM in your bio... so i don't know what i was expecting. That's a nasty thing to say, and I hope you do leave.