I am best described as a grump.

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Grump is the non-technical term. The technical term is anhedonia. Bunch of other stuff too, but that's the real miserable one.

I made an account because this is the second time I've tried to find information on disordered breathing in autism only to wind up on this forum in a thread from 2018. That's mostly not correct. If I did it twice someone else will probably do it at least once. So, in the interest of saving them time, I'm here to start my own thread on that topic. But I'm polite, when being polite isn't too annoying. So hi. I exist. You exist. We suffer. Existence is often agony. But we're not alone. And we're almost never the problem or cause of our own suffering. Knowing that truth is, at least, something.

And then I thought, well, I proved a major medical test doesn't work and, for the last year, no neurotypical will talk to me about it or do anything with that evidence in public. Except, absurdly enough, the CDC and the USPSTF. The CDC told me I was correct in writing about some of what I FOIAed them over, fixed their site and then ignored me when I asked them to issue a formal retraction what with it being unethical to lie to the general public for 13 years and then not own up to it. Still have the letter, it was a very nice letter. You'd think an admission from the CDC of error would at least get someone to look over my work. But nope. They won't even look at the letter.

The USPSTF at first told me I must be wrong (about the test never having been subjected to a control trial) and gave me a page with every study they had. I read all of them. Three months later I wrote back and pointed out that, of the relevant studies in that long list that were control trials, all of them used the test I'm claiming doesn't work for the control group, not as treatment group, which tells us absolutely nothing about whether the test works better than not doing the test. Again, I asked for a control trial on the test. I didn't get one.

Instead I got an email that ignored my question and said, essentially that the test had been undergoing evaluation by their organization since 2018 and asked me to get published so they could consider my findings. Except getting published in a journal dedicated to a field that makes much of its money off this test, or follow ups related to it, without a degree specific to that field is pretty well impossible. Highly unlikely even with a relevant degree. But pretty well impossible without one. The evidence I have is super obvious. So I'm pretty sure they know about these problems already and don't want to admit to them due to the fairly severe revenue hit it will cause a specific subset of medicine. Can't prove their motivation, but that's my gut feeling.

Since (other than the CDC and the USPSTF) no neurotypicals will talk to me about this I thought, hey, maybe someone who is active in the fields of gender studies or women's health is on here and will actually talk to me. I'd love to be wrong. Spent the last year+ trying to prove myself wrong. After being ignored by the people who should care I got a couple old friends to look over my work. Realized sexism might be in play when my old research ethics prof told me it was very clear that I was right and then told me he didn't care because women's issues didn't matter to him, and then my psychiatrist told me the same thing. Pretty disappointed in both of them.

Anyone have this as a special interest or know anyone in those fields, preferably someone who doesn't think half of all humans don't matter? Otherwise my next step is emailing every university in the US and then Canada, and then Europe until I find someone else who stumbled over this very glaring evidence pile and can't just let it go. Having ethics is terrible. Don't recommend it. 0/1,000,000 stars.

Thanks. And, again, sorry things are often terrible, wish they weren't. But it probably isn't your fault.

Welcome to WP!

Welcome to Wrong Planet!

You began by describing yourself with a word that I didn't know. So I looked it up.

Anhedonia refers to the reduced ability to experience pleasure. It has had an important place in many aspects of psychopathology since it was first described in the previous century, and is still a feature of several types of psychiatric disorders and maladaptive behaviors.

That is a strange condition. I wonder if it is really true or if that is what someone told you. After reading the entire article, I began to wonder if you fit in the Autistic spectrum.

You article tells an interesting trait. I have Asperger's Syndrome. I think of information in terms of True or False. It is part of my personality. It is either + or -.
But most of the people in this world think in terms of variation. Generally there is never a true or false in any statement. Just variations of thought.

So you go to great lengths to describe you approach in terms of true or false. So on that basis I would say you are at the right spot by visiting Wrong Planet. But on the other hand -
WHAT IS YOUR PRIMARY GOAL?

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According to one source on the internet:

Anhedonia is closely linked to depression, but you don't have to be depressed or feel sad to have it. It also affects people with other mental illnesses, like schizophrenia and bipolar disorder. And it can show up in people with seemingly unrelated health concerns like Parkinson's disease, diabetes, coronary artery disease, and substance abuse issues.

Scientists think anhedonia may be tied to changes in brain activity. You might have a problem with the way your brain produces or responds to dopamine, a "feel-good" mood chemical. Some early research (on rats) suggests that the dopamine neurons in an area of the brain called the prefrontal cortex might be overactive in people with anhedonia. This somehow interferes with pathways that control how we seek out rewards and experience them.

HOW IS THIS CONDITION TREATED?

Anhedonia can be tricky to treat. There’s no clear way to do it. The first step is generally to find any unknown cause, focus on treating that issue, and hope the anhedonia gets better as a result.

That's often true, especially when it comes to depression. People who take antidepressant medications (selective serotonin reuptake inhibitors, or SSRIs) may find that anhedonia improves along with the rest of their depression symptoms, but that's not always the case. Sometimes these medications blunt emotions and make this problem worse.

Scientists are working on new treatments for people with anhedonia who don't get better with treatments like SSRIs and talk therapy. One that shows promise is ketamine, a medication best known for being a party drug that also has an antidepressant effect. More research is needed, but at least one study found that people with bipolar depression who had anhedonia got relief from this symptom within 40 minutes of a ketamine shot.

Personally, I do not think taking a party drug is the best solution to the problem. I would be cautious taking this approach.

You are entitled to your opinion, but it doesn't matter to me whether you think I belong on the autism spectrum or not. Apart from my undergrad psych degree, and working around members of the psych profession in the research field for 13 years on improving accuracy in qualitative studies, I have a formal diagnosis from a psychiatrist. Until such time as we have a valid fMRI diagnostic system, I have autism to the best quality of diagnosis available in adults. If you would like to dispute that diagnostic criteria have at it, but it's functionally irrelevant. Something is different about me that makes me very good at research and very bad at people. It is debilitating. Society has decided to call that thing autism. While I pick fights I try to only pick the ones that produce a benefit to someone if the incorrect fact is believed to be true. Nothing changes whether I do or don't have autism. Things do change if I'm right about breath dysregulation and if I'm right about an invalid screening test.

As the article notes anhedonia is treated on a cause specific basis. I have anhedonia because humanity is terrible. I can prove humanity is terrible (which isn't hard, most people on here can prove the same thing) and the main reason people disagree with me is not because humanity isn't terrible but because they don't want to rationally evaluate the overwhelming evidence that humanity is terrible. Kids are getting a lot better about that. Tell many of them that people are awful and they'll agree with you. Because humanity isn't going to stop being terrible I will never stop having anhedonia. And I've accepted that.

I'm on here because, as I stated, there was a post from 2018 about breathing that was wrong. I believed it at the time and it took me another five years to feel better because I did. It is therefore important that I tell other people that it wasn't correct in case they are in the same situation.

Additionally, people have a lot of trouble with logical reasoning in areas where matters are thought to be settled. Autists, in my experience, are much better at asking questions. Therefore someone on here is much more likely to be willing to take a second look at the evidence (which is missing) for a test that everyone assumes is well documented. And assumes that incorrect fact so strongly that they haven't bothered to evaluate the research record. And so haven't noticed the missing evidence.

Those are my primary and only purposes in being on here. I don't need to have a unitary primary goal. Even if I forget to breathe at times I can still walk and chew gum at the same time, or have more than one forum thread over the course of several months. Which raises another relevant point. Black and white thinking is something you can mostly train yourself out of. I did. It's not impossible just because you have autism. Yeah, it's harder, but go to law school for a while and let me know how that black and white thinking is doing. It made me aware enough of it to maneuver around it. Made my depression worse too but we can't have everything.

This is an interesting conversation. You feel the need to make others believe that the world is black and white. You define yourself as having a condition called Anhedonia. This is an old term from a long time ago. And then you respond that you have:

"undergrad psych degree, and working around members of the psych profession in the research field for 13 years on improving accuracy in qualitative studies"

and as a result I think you are trying to tell me that you can think like NTs because of your training. But at the same time you have focused for the past 5 years on one element of theory. You stated this as: "I'm on here because, as I stated, there was a post from 2018 about breathing that was wrong. I believed it at the time and it took me another five years to feel better because I did. It is therefore important that I tell other people that it wasn't correct in case they are in the same situation. "

So the main point of this article is "breath dysregulation". What a strange topic you have placed here. I know about this topic. You see a little over 2 and a half years ago, I suffered a massive stroke. My heart stopped beating for around 5 minutes and I died. But then there was a spark, like a spark of electricity that ran through my body and my heart began to beat again and I began to breath again. But the damage was already done. I suffered major damage in the middle of my skull on the back side. I lost my ability to read and also my knowledge of all spoken words. Most people do not recover from this damage. They call it Aphasia, and I suffered the most severe form of it. But I have made some progress on my journey back.

But this was not the first time that I died. I died when I was a small child.

So what is the point. Well if you cannot breath properly, it can cause some damage. I suffered this type of damage when I was a child. Around age 3 or 4, a large bull (think of a dinosaur) attacked me and struck my skull. I died. I experienced a near death experience. I saw my dead body. I was standing right next to it. But I came back to life. But I was a very different person. I was the brain that exist on the right side of my skull, not the left side. For most people, their daytime brain is on the left side of their skull and the right side is their sleep brain which comes online in REM and NREM sleep. I am the opposite brain. It was a brain switch.

Humans are some of the most complex creatures that have ever existed in our planet and perhaps the entire universe. We have multiple brains.

Welcome to WP!