[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.