[throwaway93754]

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.

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.

[RcouF1uZ4gsC]

> “Nothing About Us Without Us.”

I feel this phrase really introduces selection bias. This selects for people with autism who can communicate and live independently.

However, this also suppresses the experiences of parents and other care takers of people with autism who are unable to communicate or live independently.

Thus people with the most severe autism are not heard at all since they don't have the ability to speak for themselves, and their parents/caretakers are excluded.

[CoastalCoder]

IIUC, 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.

[throwaway93754]

No, that's not what I'm trying to say. I think it's hard to assume good intentions sometimes.

[CoastalCoder]

I see. Yeah, it's a vexing problem. Occasionally I make a comment on HN with the best of intentions, and despite that I'm accused of not discussing in good faith. I haven't found a good way of persuading them otherwise once that happens.

It's frustrating because I think it prevents some really interesting and important conversations, especially on difficult topics.

[throwaway93754]

Yeah, I agree. I have to admit that I've probably been on both sides of that. It's human nature I suppose.

[mbilokonsky]

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.

[teakettle42]

> 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.

You're literally giving yourself leave to "talk over and in place of" a "severely autistic" child, and their care-giving parent.

This is a parent concerned over "who will take care of my son when I'm gone."

Do you really believe that by arguing "Severe Autism" vs. "High Support Needs", you're improving their situation, improving general state of discourse, or even raising an issue that matters at all relative to their serious concern?

> Of course you do, and you seem like a parent who is invested in their kid's future. Thank you.

This is inappropriate and patronizing. You're not in a position to approve, disapprove, or thank a parent on behalf of their autistic child.

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

As an now-adult who was also diagnosed with ADHD and autism, all I'm asking is that you take the time to listen to other Autistic adults when we strenuously disagree with your using a DSM diagnosis, which we just so happen to share, as some sort of bludgeon to police and coerce other people's words and behavior.

[mbilokonsky]

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.

[teakettle42]

> 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.

What does "problematic" mean here, exactly?

As for "disrespectful"; how is it disrespectful of anything other than your opinion? Why is your opinion deserving of more respect, here? You do not have "severe autism" and cannot speak from their child's experience; if anything, it's disrespectful to pretend that you have more authority on the subject than the actual parent and caregiver.

> 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? ... That's a take, but it's one I disagree with it. That's fine.

What moral or intellectual authority do you have to dictate the appropriate conversations people may independently have in response to your essay?

You're welcome to disagree, in which case you can post a rebuttal. Moral disapproval is not effective disagreement.

> 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.

In this context, it implies you have standing as a recipient or beneficiary of their actions, such that you're in a position to express or deny them your gratitude.

If you don't see why that's inappropriate, I'd "suggest you reflect on what you know" about the social expression of gratitude, and consider why expressing gratitude for something very personal to someone else — and entirely external to yourself — could be an inappropriate, patronizing co-opting of what they've shared.

> 4. I can't control anyone's words or behavior. All I said was that I found the comment disrespectful.

You're certainly trying to, by claiming a form of moral authority instead of using reasoned debate to convince other people of the validity of your point of view.

You've disagreed with me across the board, and used terminology I find offensive when applied to me — why is that not disrespectful by your own metric? If I told you "that's disrespectful", would it convince you of my position? If we both say "that's disrespectful", do we have to toss a coin to decide who wins?

[mbilokonsky]

Ok, thanks, I'll reflect on this.

[teakettle42]

Thanks, I'll reflect as well.

[throwaway93754]

Thanks Mykola,

I used the phrase in quotes to indicate that I also think it is not a great description. I will try to elaborate below.

> 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.

Can you clarify what you mean? Are you referring to my use of that phrase, or something else? This statement feels like it leaves no room for me to make any comment on Autism, but I don't think that is what you mean.

> I see you saying that you can't possibly advocate for your son's needs without using that phrase

I don't think that's what I said. Your description of "current support needs" in particular is one that I'm having trouble reconciling. Specifically, you wrote "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."

My son needs 24-7 support, and will for the rest of his life. His highest functioning day still makes him incapable of self care. He cannot use the bathroom himself or tell someone he has a stomach ache. And I don't say all of this because I don't believe in his potential, or as someone who hasn't been and doesn't continue to do everything possible to help him find ways of communicating. But, at his age of almost 15 years old there are realities that I have to accept and plan for. I guess I'm saying, I feel the phrase "high support need," which technically true, doesn't really accurately convey what needs to be in place for him, and tends to group him with a lot of other people who have very different needs from him.

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

I don't know any other way to say this without sounding patronizing, but listening is not the same as agreeing. I did read your article, there is a lot I agree with, and I appreciate you sharing your perspective, but I respectfully disagree with this point. I think minimizing my son's level of need is harmful to him.

[mbilokonsky]

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?

[throwaway93754]

Yes, thank you for sharing.

One point where I think we are in strong agreement: no behavior is unmotivated. I have had a number of frustrating experiences where I've brought my son to the hospital when he was in distress and struggled to get them to take it seriously. In one example, after I made a big fuss, they finally took an abdominal x-ray and realized he was severely constipated. It's heartbreaking because he had no way to communicate that other than hurting himself, and to think about how long he must have been in pain.

The thing that is unique to my son's situation, and it really core to him, is his struggle with communication. It's not just that he can't articulate things, there's some more fundamental blocker for him. He has a talker (for those that aren't familiar, an iPad with special software that displays picture icons). He's a whiz at navigating to familiar things he wants, like asking for potato chips, but he struggles with more abstract concepts like how to say he's uncomfortable. We've spent a lot of time working on body parts with him, and he's pretty good at it, but it doesn't seem to occur to him to use it to talk about what is happening for him.

I know how frustrated I can feel when I'm trying to communicate with someone and they just aren't getting it, but I can't fathom how terrifying it must be for him to have nobody understand him. And, I would assert that you probably can't either. So, while you may have some perspective and ability to speak about aspects of my son's experience, I would respectfully submit, there are many things that you cannot know or speak for him about. And while I can't say what it is like for him, I can share our experience, and advocate for him the best I can.

I'd also say I don't think we are completely misaligned. I agree that the current ways people talk about this are not ideal, and are doing harm to a lot of people. But I think we need to find a balance between being more accepting of neurodiversity while letting people like my son have the dignity to get the care they need. I don't have the answer yet, I'm afraid. But I'm encouraged by this discussion.

[mbilokonsky]

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!

[throwaway93754]

No worries, and thank you!

[Jenrose]

I'm an autistic parent of a kid with severe disabilities caused by a chromosome difference. Cerebral palsy was an afterthought diagnosis, a side effect, as it were, rather than the core issue. We could not get her diagnosed as autistic although she checks all the boxes, but the communication issues hit home. Several things:

1. Has he had microarray chromosome analysis done? Sometimes kids with chromosome differences have specific issues that affect language development, which can be mitigated to a degree with supplements, but which supplements depend on which genes are involved. There's a strong push that most kids who have profound language/developmental difficulties should get chromosome analysis done, in part because some of these issues can be helped through supplementing. Not a cure, but something to help ease the processing of language, the physical discomforts.

2. Has he had any metabolic testing done?

3. Are you familiar with choice hands?

Your situation resonated with me, because my kiddo has a deletion at 4q 21.1-21.3 which is associated with a complete failure of the expressive language system. It turns out that one of the biggest pieces of that is the COQ2 gene, which affects the body's production of CoQ10. A double recessive in that gene is associated with symptoms much more severe than my kid has, and supplementing CoQ10 and other supplements that work with the CoQ10 brought her language issues from profound to severe. Basically the CoQ10 deficiency was causing mitochondrial issues by mucking up the Kreb cycle. Now the Kreb cycle is an incredibly complex mitochondrial function, which can go wrong in a zillion different ways, but which is incredibly essential to the kinds of energy production that allow for complex motor control necessary for speech. Some knock-on effects of CoQ10 deficiency-caused mito dysfunction include constipation, low muscle tone, neurological problems, poor hunger/satiation signaling, poor sleep cycle signaling (for us, she would never ask to eat, then would eat until she physically couldn't, would not go to sleep without help, would then sleep until woken up...)

Anyway we were told when she was a baby that it was unlikely she would develop language, and by age 2 she had what I called a "roving 5 word vocabulary" where every time she learned a new word she'd lose an old word. Supplements helped her build vocabulary, other supplements to make those supplements work better improved her language in sudden bursts, one particular supplement I gave her an initial dose and her speech efforts went from a couple per hour to more than I could keep track of in 10 minutes.

We knew the language issues were coming, so we started with sign language very early, and sign language videos (Signing Time) taught her to read, sneakily, which we discovered by accident. Most of the non speaking people I've ever known could read. She needed adjustments for a visual deficit, but could definitely do it. She also had a talker, and PECS, and at one point, plastic versions of a bunch of foods that she could trade for the real thing. At 16 she now uses hard-to-understand speech reinforced with hard-to-understand sign most of the time, but we have conversations with her on the regular.

When there's a problem she doesn't have the words for, we use choice hands. "Are you hungry (present one flat hand) or something else? (present the other hand.) If she picks something else, we say, "Are you hurt, or is it something else" And so on, running through the usual suspects like "are your clothes bothering you, are you thirst, do you have to go to the bathroom" quickly. If she picks hurt, we start by figuring out where, then hone in on the specific problem. She can talk about frogs all day long but things like "I can't find my show on netflix" are harder to pin down.

At one point she stopped enjoying the things she normally liked, and that's communication, too. We added lecithin, in that case, and fish oil, to help her inflammation levels and neurotransmitter production (choline and omega 3s are very helpful for brain stuff.) And it helped.

Anyway, this is about mitigating the problems, not curing the kids of who they are. We've always been all about maximizing her ability to communicate and get her needs met safely.

We were able to use a combination of magnesium and vitamin c to ease the constipation down to something tolerable. A lot of laxatives can really mess with other systems, we just found the amount of mag and c that seemed to get her to a point where it wasn't hurting her. Magnesium, especially, can help a lot of systems work better.