mbilokonsky

I was going to engage with this but honestly I'm so tired of you misrepresenting me and projecting your bizarre mishmash of gatekeeping and victimhood onto me that I am going to bow out of further interaction with you.

I will say that you clearly do not understand what I am saying, that you are not interpreting me with the generosity that I'm trying to grant you, and that your reactions are almost entirely against straw men of your own creation. But I don't expect you to be able to hear that, and instead look forward to reading whatever misinterpretation of this comment you choose to latch onto.

Please have a nice day.

If someone is stepping on my face it doesn't much matter to me if they're doing it on purpose or if they just don't realize I'm there -- the goal is to make them stop stepping on my face.

What you're describing is a very privileged perspective that doesn't really map cleanly to many peoples' lived experience. It's not the case that I need to check whether the person stepping on my face really means to hurt me or not -- it may be the case that I need to object to the entire system that makes it easy for others to step on my face.

Of COURSE the face-steppers would rush to assure me that nobody means me any harm, it's just how the world works, etc.

Why on earth would that matter to me?

So, I think we've found some common ground here. I'm going to say two things, offer a simple apology and then make you an offer.

1. You assume that I don't know what it's like not to be able to communicate or make myself understood. While I don't have a comorbid intellectual disability, which it sounds like your son probably has, I have had one particular period of "Autistic Burnout" in my adult life where I was reduced to a shell of my former self. I couldn't articulate complex thoughts, couldn't take care of myself, didn't bathe, didn't eat, could not make myself understood to the people I lived with, etc. I've recovered in some ways, but in some ways I likely never will -- I no longer have the capacity I had when I was younger. I understand that that's not exactly the same thing as your son, who has gone his whole life without the comfort of a mutually intelligible conversation; but I hope you can hear that as an Autistic adult I have had experiences that would allow me to understand your son better _in some limited ways_ than a neurotypical person ever could.

2. The thing with the comorbid intellectual disability is really important. I'm not a huge fan of the DSM, but at least here it's how people get medically diagnosed and the DSM is very careful to say "Autism is NOT intellectual disability, though they do co-occur frequently". From what you've described, your son sounds like an "extremely high support needs autistic person with a comorbid intellectual disability" most technically. I get that "severe autism" can be shorthand for that, but the chilling effect on the global discourse around Autism is that people don't understand the distinction, and conflate intellectual disability (or speech-impairing apraxia) with autism itself.

3. I've reflected here a bit and I apologize for my defensive reaction to your original post. I didn't appreciate the intention behind using quotation marks around the term "severe", I read that differently than you intended it and I apologize.

4. You need help and support and I'm splitting hairs over word choice over here, I get that we're coming at this from two very different perspectives and I'd like to further apologize for not being as empathic as I'd like to have been towards your first post. I'd like to offer you my help and support if there's anything I can do or any insights I can provide or any introductions I can make to other folks in the neurodiversity movement -- or even if just a conversation outside of this kinda hostile environment would be of interest, please let me know. My email address is my username here at gmail.

Thanks, and have a great night!

Ok, thanks, I'll reflect on this.

For what it's worth, I meant "thank you for pointing out the arguments that I would have otherwise had to do the work of pointing out."

The phrase "call out" isn't a universal dog whistle for bogey men to come drag you to the gulag for wrongthink. Your reaction to it has been exhausting.

Autistic 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?

Thanks for the measured response, I hear where you're coming from.

> Can you clarify what you mean?

I can try. When I say that non-Autistic people shouldn't speak over Autistic people I am referring to decades of behavior. Everyone from doctors to caregivers to parents make assumptions about what Autism is and what Autistic people need, but it's so infrequent to have those assumptions validated by other Autistic people.

Let me give you an example. In Doctor Gupta's CNN special about Autism and Marijuana he shows extensive footage of a teenage Autistic girl hitting herself and screaming while in a car. To any Autistic person watching it's obvious that this girl is in extreme distress, that she's hitting herself for _some reason_ because it's somehow better than the experience of not hitting herself.

That's what I mean when I say that no behavior is unmotivated.

When Doctor Gupta interviewed a distinguished scholar of neurology about this girl, he actually asked "Do we know WHY she's hitting herself?" and the answer that he received was a few seconds of confused silence followed a mumbled comment about "rigid and repetitive behavior".

Nothing about distress. Nothing about sensory needs. No suspicion that something is causing her to need to express or stimulate herself in that manner.

If he had chosen to interview an Autistic adult -- even a "high functioning" Autistic adult, like me -- that conversation would have gone very differently. We would have gotten into the ways that non-speaking Autistic people communicate, the ways that environmental factors that would seem harmless to NT folks can be traumatic for Autistic people, and the ways that many perfectly healthy Autistic adults learn and engage in less-harmful forms of self-harm in healthy ways to help regulate themselves.

So in that one example, do you see why choosing to interview the NT "autism expert" was a poor choice? Do you see how it perpetuated stereotypes of Autistic people in distress as "that's just Autism"? Do you see how it treated the girl as an object, instead of as a subject?

When you made your original comment here, choosing to use the phrase "severe autism" without interrogating or even acknowledging the arguments I made about that phrase, it made me feel the same way I felt when watching that interview.

It's not necessarily that you're wrong, it's not that you have to agree with everything I say, it's not that your insights into your own kid's life aren't really valueable. It's that this turned into one more instance where an Autistic person did his absolute best to say "please don't use this phrase, it hurts us" and you went ahead and used it anyway. And that's what really bothered me, because it's the same as that doctor using the phrase "rigid and repetitive behavior". It terminates all inquiry and moves on.

And to see this comment voted near the top of the discussion, well, can you see why that's frustrating to someone like me?

> My son needs 24-7 support, and will for the rest of his life.

Many people with high support needs do. That's what "High Support Needs" means. I understand that to your ear it may not have the urgency of "severe autism", but can you at least acknowledge the many arguments I made as to why that phrase is not only harmful but inaccurate?

I don't know your son, I don't know what co-occurring conditions he has. I do know that there is probably a lot of insight to be offered from the Autistic community at large about how to deal with a lot of his challenges, and that's what I mean when I say listen to Autistic Adults, as well.

I'm not saying you have to agree with everything we say -- I'm saying we have a perspective that is deeply relevant to your situation, and if you're like most parents of Autistic kids you're not really benefiting from that perspective because too many of the interactions around this point become acrimonious, to your point.

I'd like to offer you one more bit of context that may help you to contextualize why that happens: a shit ton of us have massive CPTSD. We grew up raised by the best-intentioned parents who made a lot of mistakes because they didn't know any better, and we suffered for those mistakes.

Many of us in our adult lives have turned around and tried to talk to people like our parents, to offer our insights into things that may not be obvious to them. And that would be great -- except that often, when parents push back, they do so in a way that puts us right back into powerless childhood memories and triggers that horrible emotional flashback experience.

I think the real problem here is that people like you need WAY MORE HELP than you're able to get. I am here for you and WANT to help you, I want your kid to have the best life possible, I mean that with all my heart.

But when we come to try to offer that help we're often seen as scary, weird, angry and confusing. I get it, I really do -- and I can see why my reaction here, and calling your piece "disrespectful", may have added to that problematic stereotype. I'm doing my best to build bridges, but I'd be lying if I said that some of the comments on this thread didn't put me into a defensive state, so I'm sorry if I splashed any of that on you.

Does this help explain where I'm coming from?

I agree with that sentiment 100%, which is why I went to great lengths to encourage readers to make sure they check in with other Autistic people, that my voice is only one voice, that we are not a monolith, that I don't speak for everyone, etc.

Hell there's even a line near the end where I say that there are Autistic people who would disagree with every single line I have written, and that they are worth listening to as well.

So like... what's the problem?

I'll assume you're asking in good faith, so let me answer why I put my pronouns.

I'm mostly cis, mostly straight. I round up to a typical "straight white guy". I don't have to deal with the things trans people or gay people or women have to deal with.

But I am sympathetic to the fact that they lack a lot of the privilege that I have. So one way I try to show solidarity is by doing my part to normalize the idea that it's impossible to infer someone's gender from their appearance.

I list my pronouns to make it normal to list pronouns, because that makes life better for transgender people.

Does that make sense?

With respect:

1. I'm not talking over anyone. I'm expressing that I found the use of the phrase 'severe autism' in a response to an article explaining why 'there is no severe autism' to be a problematic use of language that felt disrespectful to me. I'm allowed to have feelings about the words people use, and the author expressly stated that he was trying to be respectful so I wanted to provide the feedback that I didn't perceive it that way.

2. I absolutely understand that this is a parent concerned over "who will take care of my son when I'm gone". Let me ask you this: what does that question have to do with the essay? The point this parent was making is that the essay shouldn't be listened to because the reality on the ground is that it's too hard to be careful of language when you need to communicate urgency. That's a take, but it's one I disagree with it. That's fine.

3. Thanking a parent for being invested in their kid's future isn't patronizing or inappropriate. Many parents of Autistic kids aren't. I was speaking sincerely, and if you're reading sarcasm or passive aggression in my tone I'd suggest you reflect on what you know about Autistic tone and stop projecting onto me.

4. I can't control anyone's words or behavior. All I said was that I found the comment disrespectful. That's not me forcing anyone to change, and far, far worse has been said to me in these comments.

I can see that I've upset you, but I'd like to suggest that you're reading things into my words that aren't there and projecting interpretations that I don't intend. Thank you.

Great! That's a valid perspective and you should keep it!

In the autistic twitter community where I and a lot of other advocates spend our time we are inclusive and speak frequently about ourselves as a culture -- not as a monolith, mind you, but as a culture. We disagree frequently about everything from IFL/PFL to whether or not Autism should be considered a disability, but we recognize that we're all Autistic and we're all doing our best to make the world a safer place for all of us.

1. Your distaste is of course your prerogative! But I'd encourage you to read the piece and recognize that I go to great lengths to encourage people to seek out views beyond mine -- I even say that plenty of Autistic people disagree with me, and that their perspectives are valid. So your distaste is up to you, but I feel like you're misunderstanding my point

2. When you put "disabilities" in quotation marks you publicly assert that I'm faking my disabilties, or that something about being open about having disabilities makes those disabilities somehow less than real. Please don't do that, I work really hard.

3. I am intentional about my twitter bio, and there's a reason those terms are there. I'm working to dismantle oppressive neuronormative cultural norms that tell people like me we should be ashamed of ourselves and hide the things about us that make us different. Your distaste here isn't some sort of moral high ground, it's literally just an uncritical embrace of dominant cultural norms. Again, though, your distaste is your prerogative.

4. I "define myself" through a number of things on my twitter bio. Why are you focusing on two of them and then insisting that I'm defining myself via those two things? Further, why do you assume that what I choose to put in a twitter bio is what defines me as a person? That's a weird choice.

5. Finally, my project is literally about changing what's socially acceptable. I expect this kind of writing to make people who are committed to oppressive status quo uncomfortable. I literally don't care if me being who I am is "socially acceptable" where you live, or if it's "socially acceptable" where I live. That's the point. Fuck social acceptability, I'm a human being.

I hope that clears some of that up for you!

> 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.

Seems that way, huh?

Thanks for this feedback, I'm hearing that that part of the essay was confusing. I'll try to revisit it and simplify it.

The TLDR is that there is an assumption dating back to the beginnings of Autism research that Autistic people have a "communication deficit".

The point of the Double Empathy Problem is that it shows that that's not true -- that when you have an Autistic Person and a Neurotypical Person interacting they each struggle to understand the other.

In other words, it's not a deficit on the part of the Autistic person -- it's a mismatch between communicators and should be recognized as a systemic failure mode not an error on the part of the Autistic. I hope that helps! :)

As an Autistic person who recognizes that many friends and interlocutors are also Autistic I can tell you that I have yet to discover a way to so much as suggest people look into it without terrifying and offending them.

A large part of the reason why I do what I do is to offset that reaction and let people recognize themselves in descriptions of the Autistic experience.

Thank 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.

1. I'm not an Aspie. I'm Autistic. The language choice matters.

2. I'm not talking on anyone's behalf and spend half the words in the text validating people who disagree with any of my claims.

3. Oh, I see, Autistic people are like Trans people in that we aren't worth listening to. I wish I'd seen that line before I started responding, but here you go!

This feels really weird to me. My whole point in the piece was that non-Autistic people shouldn't be given unilateral leave to talk over and in place of Autistic people, but that's exactly what you're doing.

I had a whole section in the article that explains why the phrase "Severe Autism" is inappropriate, and does more harm than good to Autistic people.

I see you saying that you can't possibly advocate for your son's needs without using that phrase, and I don't understand why you're saying that. Surely "High Support Needs" conveys everything you mean to say without misrepresenting what Autism actually is?

Like, I hear that you are worried about and love your son. Of course you do, and you seem like a parent who is invested in their kid's future. Thank you.

But this comment was really disrespectful. I made a reasoned argument as to why that phrase was hurtful and you didn't address it at all except to say that you didn't respect it.

I want to stress that I absolutely understand that you are dealing with a lot. Raising Autistic kids is really hard, and scary, and often the only support you get is people who don't know what they're talking about. But some of them have doctorates, and so you listen to them, and that makes sense.

All I'm asking is that you take the time to listen to Autistic adults, as well.

Hi, I'm the author, I'd love to help clarify this.

When I say I'm speaking for "the community" I mean very specifically that I'm a member of the community and I'm speaking about us. I went to great lengths repeatedly throughout the piece to make sure I was very explicit that I was only one voice.

I made a minimum of claims about Autism and what it is. Mostly what I argued was about what it isn't. I use the phrase "If you have met one person with autism you have met one person with autism" literally in the essay, so the fact that you would trot it out as a sort of correction is a bit confusing to me.

I don't think you disagree with me, I think you're a bit upset to see nuances that you don't agree with put forward -- even when they insist that disagreement is also valid. Is that right?

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.

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! :)