Forgetting to breathe and autism/aspergers.

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In reading this I'd like to ask you to remember that just because you may not have a problem doesn't mean others don't. And claiming that something isn't possible without supporting data is pretty much what neurotypicals do to us all the time. Which doesn't feel very good and isn't very rational. I get that you may not have this problem, I do have this problem and I've proved it to the best of my ability with the resources I have available.

I have decent reason to believe, both from the research base, the self-reports from other autists and my own testing, that some of us forget to breathe at times. I'm now on O2 and I have an ASV machine. My lung function is normal. But when I'm concentrating or stressed I don't breathe and my O2 saturation falls as low as 84-86% before I gasp for air. I know that's accurate because I validated several different pulse oximeters against the hospital's units. And then switched between them every day for a month in case one failed and observed the results. The same thing happened every day: whenever I got upset or concentrated on anything for longer than about five minutes: my O2 crashed because I wasn't breathing.

I decided to see if that had been studied in the autistic population. Sorry about the lack of links, board won't let me post them due to me being new to the forums. From what I can tell, no one has ever put O2 monitors on autistics and taken an O2 snapshot of their lives for a week or so. Like when they're doing our normal stuff, rather than sitting in a doctor's office. I would assume that other autistics have done what I did and collected their own data, but I can't find it published anywhere. We know autism can cause disordered breathing in some people, see the article: "Respiratory and autonomic dysfunction in children with autism spectrum disorders," we know disordered breathing often causes low O2 (central sleep apnea is disordered breathing for example) which is why many stroke and heart failure folks are on ASV systems, and we know that autistics self-report disordered breathing see the Reddit thread called: "Weird question... Do you sometimes find yourself forgetting to breathe?" on /r/aspergers and I know my O2 crashes with no clinical cause other than disordered breathing due to concentration and stress. Because it doesn't happen except when I'm concentrating or stressed. But we don't have a study that I can find that actually tracked O2 in autistic people.

I emailed a research university's autism group today and explained what I found in testing myself. I expect to be ignored but I'll still make the effort.

In the mean time I felt that it was important for the community to be aware that yes, this is possible. Maybe when you feel like you're not breathing or too stressed to breathe put on a $10 pulse oximeter and see if your O2 really is low. I'm pretty sure it's not just me based on that reddit thread and my in person conversations with other autistics. No clue how many of us this happens to, but I can prove it happens to me so it's not zero.

That's about all the writing I have in me for today. Thanks for reading.

Yes I forget. I have sleep apnea but I forget in the day too.

I don't know what causes it other than my apnea.

As a child I needed a respiratory therapist once a week for years to make my lungs work.

I used to forget to breathe often. I ended up in a martial arts class in my 20s and my instructor called me out on it (I hadn't noticed it was a problem, but he did) and worked with me on it. I don't do that much now as I tend to be mindful of my breathing these days. But before? Oh yeah. It was for ages and likely still would be an issue had I not worked on it earlier. It's fair to mention that I fail to do a lot of things that most people do naturally...like notice hunger cues. I always figured they were similar, my not thinking to breathe or eat. I have a pretty profound body mind disconnect going on here.

Interesting topic. I'm curious how others respond.

Yes.

But not from autism/aspergers.

It's because of my chronic rhinitis. It either inflamed or clogged at least half a time on a daily basis. It's worse during bedtime or when lying down.

It's also sometimes a stress response or a response to humidity and atmosphere, irritants or any of those. I simply struggle to physically breathe.
It's either forcing my nose or mouth breathing can hurt my teeth from temperature and jaws from just being open for too long.

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Wow! Double wow!! I thought this was just a 'me' thing .It's happened quite a lot of times when concentrating hard on a physical task.

It can be related to emotions or exerting mental effort. I was researching this recently.

https://physoc.onlinelibrary.wiley.com/ ... 008.042424

Mammals (with rare exceptions) don't need to remember to breathe.

Are you a dolphin infiltrating human society?

I'm sorry it took me a bit to reply. My roommate (also autistic) had to go to the dentist yesterday which is a two hour drive and then people happened and then they messed up her appointment and we had to argue with them to get them to do the thing the appointment was booked for (fixing a half broken tooth) rather than what they erroneously changed the appointment to in their systems (taking pictures of all her teeth so they could learn that one of them was half broken.) Normally that would have taken me out for several days, but on the O2 and ASV machine I was only out for the rest of yesterday. Which is better and provides one more data point to support the idea that at least one autistic benefits from not having their O2 levels fall into the hypoxemia range during the day.

Thank you all for personal stories and for the citation. It's a great relief to have confirmation that I'm not alone in this. I'm going to send this thread to the research university I'm contacting.

I'm going to do something I feel is sort of mean, because I think it's important to learn from this. I want to be clear that I do this too, and so do highly paid and highly educated scientists. All of us probably do it in a lot of areas every day without realizing it. This is an everyone problem, an every human problem, and not a defect with the person who happened to be the first to do it in this thread. It was going to happen and, unlike what usually happens, they were smart and educated enough to not state that it was impossible for the data I've collected to be valid because of an unproven generalized statement.

So the statement that mammals don't need to remember to breathe. After it was made you'll notice that the replies stopped. Now, that could be a coincidence, but I don't think it is. This is not the first time this topic has come up. But what has happened in the past, and what I believe happened here, is that a person expresses an opinion about breathing that lacks adequate (or any) supporting data (meaning the opinion is dogma) and people then think "well, I've heard that before, it must be true and my own experience must be in error and, even if I'm right, people will look down on me for going against prevailing thought." and stop talking about something that personally does happen to them. Which hampers scientific research by precluding it from ever occurring not on the basis of negative evidence, but on the basis of what everyone thinks they know, even if what they think they know isn't adequately supported by data.

That's not how either discussion or the scientific process are supposed to work. Which becomes fairly obvious when you think about it. Consider the helpful statement provided in the last reply. To know if mammals sometimes need to remember to breathe while awake and going about daily life tasks we'd need to identify the brain regions responsible for memory and for breathing and then conduct an fMRI study on each mammal species under the normal conditions that animal lives in. Which is currently impossible because no mammal normally goes about their daily business strapped to a board in an MRI, not even humans. The best we could do is say that animals strapped to a board in a large whirring cylinder do/don't sometimes forget to breathe. But we haven't even done that. And yet that unsupported statement was presented as a scientific fact and likely seen as such by people reading this thread. But we don't have the data needed to support that claim, it is quite likely that no one could even collect the data needed to support that claim regardless of funding due to current technological limitations. And yet, most people think they know it's true. Just as everyone thinks they know that autistics breathe in the same way that non-autistics do, also without collecting the data.

I'm sorry for picking on you funeralxempire. You were just the first person in this thread to do the thing I knew was going to happen, because it happens most times this topic comes up. Pretty much every human, me included, makes this mistake without realizing it probably a minimum of once a day. Even very smart and well educated scientists make this mistake. And often with things that have much worse consequences for our species than just unsupported statements about mammals. Peer review is supposed to help prevent it, but the people doing peer review are also human and also think they know a great deal that no supporting data actually exists to prove up. So a lot of low hanging research fruit (like the fact that some autistics have anxiety and some autistics self-report not breathing could be related facts because hypoxemia causes low oxygen and low oxygen likely causes anxiety in a high percentage of humans, even autistic humans.) never gets studied and we're all worse off for it because we assume things are the same as other things, even when they probably aren't.

To be absolutely clear, all humans make these errors in reasoning. I was expecting whoever made it in this thread to try and claim that my data was impossible. That has happened in the past when people tried to talk about this, and even when people have tried to talk about this on here in the past. You didn't do that and I really appreciate the higher quality reasoning such restraint implies. I'm not trying to make you feel bad and you shouldn't. We literally all do this. All humans I've interacted with (even us) seem to be wired to have this logical blind spot. Unless we ask "but where is the supporting data?" it's going to happen. I consciously started asking to see the supporting data on everything, because I have the time for it, and it turns out we're missing a huge amount of supporting data everyone thinks we have.

On the one hand that's terrifying because it means not only don't we know all that much but a lot of the building blocks of our scientific knowledge is actually missing. We think it's there, but it really isn't. On the other hand only by taking a hard look at that missing data can we fix it. And maybe we learn something that helps our community in the process.

Wow, I will actually forget to breathe if like I am focusing on something like for example playing a racing game. I don't know if it is Aspergers related but when I am working or exercising I will breath no problems and same with sleeping but when I am just chilling like watching something

Thanks for sharing you're experience.

It's the same for me (with concentration at least, but I have stress issues with it too) and I've recorded my blood O2 falling to hypoxemia levels (<90% O2) when it happens. It seems to be something that hasn't been studied, even though threads like this one demonstrate that some people with autism/aspergers do have this experience with not breathing.

I can't do much these days, but I can certainly contact labs and ask them to run the study. Eventually I hope that someone will. As compared to fMRI work or detailed breathing pattern and frequency studies, giving people like us a wearable pulse oximeter for a week and then seeing what the data shows is pretty low cost and easy to do.

I also have overall low blood pressure and having below average resting heartbeat rate...

Which can't explain by aspergers -- and definitely cannot be explained by too common comorbidities like anxiety.

Yet when I move, it fluctuates too fast.
So far, a doctor remarked it's borderline.


I thought it's normal that one loses their eyesight for few seconds whenever one stands up too fast, because it happened to me before puberty.

Unsure if that's related to breathing itself, but it definitely relates to oxygen levels.

When I temporary took meds for what seem to be for vertigo and head blood flow -- I fluctuated between being cognitively sharp and cognitively sluggish.
And spent my time on the latter most at the time.


There was a point in time where I held my breath for fun yet half an minute later, I start losing eye sight.

My 'normal' fluctuates between that and a minute and half before needing to breathe again. My upper limit without issues is around 2 minutes long.


On top of breathing issues, having to grow up with screwed breathing patterns directly due to respiratory issues...
I'm not sure if I have a heart issue or blood issue, or some systematic issue somewhere...

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Interesting, thank you for sharing.

That's not anxiety. Though my former Dr. tried to pass it off as that. Which is half of why they're my former Dr.

To be clear, do you mean borderline like BPD, which it categorically isn't a symptom of, or do you mean borderline like its similar to another condition?

You may want to look into POTS (postural orthostatic tachycardia syndrome.) I have it. It's associated with autism/aspergers, as in, people on the spectrum get it more often than those who are not. My resting heart rate is 39 but 100+ when I stand up. There are two kinds of POTS. One kind causes low blood pressure on standing and the other doesn't but both cause elevated heart rate on standing. I have the kind that doesn't cause low BP. Oh, be aware that sitting up can also mess with your BP if you have POTS, so your sitting reading at the Drs office may also be low. Home diagnosis of POTS with an active stand test is possible, which can then be repeated in your Drs. office to prove up your own research (I suggest having a description of the condition printed out when you go in, that's what I did.) I can't link things because I haven't been on the forum long enough but to do an active stand test:

1) Take your heart rate after laying down for a bit (5-10 minutes)
2) Stand up. Take your heart rate again at 2, 6 and 10 minutes.
3) If you are an adult and your heart rate is a sustained 30BPM or more higher standing than laying down you meet the criteria for POTS.

I know a lot about this condition so I'll be glad to talk more about it if you want. One of the biggest indicators is getting tired fast when you're standing. But feeling pretty okay when you're laying down. What you're describing sounds like some kind of autonomic dysregulation but the only one I'm familiar with is POTS. I think it's also the most common one.

My breathing times are about the same as yours. Tried that ice bath stuff for depression a while ago which includes breathing exercises. Believe my record when trying was about 2 minutes. Just forgetting to breath without trying to hold my breath is only about a minute max though. Then my O2 drops low enough that the backup mechanism to automatic breathing kicks in and I gasp for air.

They were probably evaluating you for orthostatic hypotension. If you're not tired when standing it's probably not POTS.

I suggest that you not ignore this and not believe that it is beyond your capability to get a diagnosis on your own and with a budget. Ideally doctors would help you. Unfortunately the world we live in is less than ideal and, especially in the US, doctors really don't help with a lot of problems, especially for women and people who are neurodivergent. It may be the case that this is actually fairly easy to diagnose and your doctor just didn't care. That has happened to me repeatedly. Thinking about it, with the exception of depression and anxiety, all my diagnoses have actually been cases where I did all the research work, ordered the tests necessary to confirm and then told my doctors to validate, switching providers and pointing out that they were violating the accepted standard of care where they refused to even validate my own work. Lot of reading, but it was better than feeling bad for the rest of my life.

I wrote a long message that covered everything and then realized that, if you even want help, asking a few questions would be better than providing the summarized differentials for those symptoms. I can tell you how I'd go about getting an accurate diagnosis as cheaply as possible. If that would be helpful let me know and I'll PM you.