For 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.<p>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.<p>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.
Person 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"<p>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.<p>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).<p>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?
I have to agree with blueflow, here: this type of activism is really irksome.<p>Honestly, I can't think of anything more counterproductive than Aspies trying to create more rules and further complicate discourse...<p>He hasn't been chosen by us, doesn't represent our views, and yet still feels like he can talk on our behalf.<p>I've heard the same thing from trans people before.
We need to stop listening to these people.
I like this headline: "Key Takeaway: No Behavior is Unmotivated"<p>I was looking at a circa 1980 conference proceeding on vandalism which had a quote from this notorious character<p><a href="https://en.wikipedia.org/wiki/Philip_Zimbardo" rel="nofollow">https://en.wikipedia.org/wiki/Philip_Zimbardo</a><p>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."<p>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?"
Wow, this is amazingly well written. I have a disability (but not autism) and can't help but be like... well, yeah, unquestionably correct.<p>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.
I had difficulty parsing the "Double Empathy Problem" because it's written with so much meta commentary and qualifiers.<p>So what is the Double Empathy Problem? I'm still not sure what the article says after reading it twice.<p>Is it something like this?<p>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 <i>your</i> thoughts would go if you were in their situation.<p>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.
I 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.<p>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.<p>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.<p>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.
The attempt to transform autistic people into a marginalized identity group is incredibly off-putting.<p>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").
Hi! 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.<p>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.<p>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.<p>Thanks for the discussion! :)
> 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.<p>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.<p>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.
I 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.<p>Its probably some kind of US identity politics thing. I don't think defining yourself via your diagnoses is socially acceptale where i live.