It isn't "oh, I don't know how to read a room." Even granting high function, I feel people use autism in the same way as they do OCD; it's not something you use "neurodivergent" with seriously.
Like generally there's a lot of disability chic or identity these days; but moderate autism makes it incredibly hard to act in daily life in the same way moderate OCD does. If it's significant enough, it's not just someone being brisk or unempathetic in the same way OCD doesn't mean being a neat freak.
People who claim to have "moderate OCD" are just people who like things being tidy, and describe it as OCD because they have no understanding of the real, debilitating condition. Describing yourself as "moderately obsessive" makes no sense, and being able to live with the untidiness means you are not compulsively tidying.
A huge part of the problem with mental health problems is people using the terminology as some sort of 'badge of honor', as if it's something cool and trendy to have rather than an illness that can ruin your life. People really need to stop saying they have OCD unless they've been diagnosed by a professional.
And as for "moderately obese"... I wouldn't have previously described myself that way, but I fit it. My doctor tells me I'm medically obese. Nobody looking at me would describe me that way, but they would admit that I'm over-weight. They all say I look fine and don't need to lose more weight, though. If that's not "moderately obese", I don't know what would be.
What the world needs are terms to describe compulsive behavior, succinctly, other than "moderate OCD". I definitely have things that bother me immensely if I don't fix them, but it isn't to the point that I need help with it. I clearly don't have "OCD", but what do I have? There's no word for it.
I've stopped using the term OCD for anything about me, because I know it bothers other people. But I don't get mad at those who continue to use it because there's no proper term, and thus no way to actually correct their behavior. Only to stifle them. And I don't do that to other people.
Obesity is divided into 3 classes: class 1 (low-risk, BMI 30.0 to 34.9), class 2 (moderate-risk, 35.0 to 39.9), class 3 (high risk, 40.0 or higher). Using the term "moderate obesity" for class 2 obesity may not be exactly standard, but it has some logic to it.
> I clearly don't have "OCD", but what do I have? There's no word for it.
Is it possible you have subclinical OCD?
https://pubmed.ncbi.nlm.nih.gov/18849913/
(Or maybe subclinical OCPD?)
As for the OCD... Even that description sounds worse than what I have. But the existence of "subclinical OCD" makes me even less worried about people claiming to have "moderate OCD" or something. Not only is it a spectrum, but the experts seem to be fine with using the word to describe people that are almost it, with some qualifying words.
The thing about a spectrum is it makes room for people who, by necessity or will, share the symptomatic experience but lack some of the disabling impact. The benefit of that inclusion is that those people are able to benefit from a diagnosis and relevant treatment even if they’re not in the direst straits.
In my own experience, this meant that I was able to begin treatment for ADHD even though I’d had over a decade as a successful adult. And that treatment saved my life. Sure, I made it that far with what I could scrap together in myself and my luck in life. But when that wasn’t enough, my “moderate” case revealed its severity. If I’d had access to that diagnosis and care earlier it probably wouldn’t have ever been so severe.
> Keys explicitly judged BMI as appropriate for population studies and inappropriate for individual evaluation. Nevertheless, due to its simplicity, it has come to be widely used for preliminary diagnoses. [1]
Some people are actually diagnosed with "moderate OCD" though. Some psychiatrists like to use descriptors like "mild" or "moderate" or "severe" when they make a diagnosis. The DSM-5 doesn't include those terms as specifiers, but that doesn't stop some clinicians from using them anyway. (Clinicians vary widely in how strictly they adhere to the DSM-5.)
Also, while the DSM-5 doesn't include the concept of "mild"/"moderate"/"severe" OCD, some rating scales used clinically in diagnosing OCD do include such a distinction. Y-BOCS (Yale-Brown Obsessive Compulsive Scale) scores are divided into four ranges – subclinical, mild, moderate, severe, extreme. A person with an OCD diagnosis who scores in the moderate range of the Y-BOCS will quite possibly be told they have "moderate OCD".
The DSM-5 does include three specifiers of level of insight for OCD: "good or fair insight" ("The individual recognizes that obsessive-compulsive disorder beliefs are definitely or probably not true or that they may or may not be true"), "poor insight" ("The individual thinks obsessive-compulsive disorder beliefs are probably true"), "absent insight/delusional beliefs" ("The individual is completely convinced that obsessive-compulsive disorder beliefs are true"). It is an oversimplification to equate that to "mild"/"moderate"/"severe", but some people will do it anyway.
Clinicians need to convey to patients (and their family members and others) the severity of the individual's condition in terms which lay people will readily understand. Terms such as "mild","moderate","severe", despite their limitations, meet that need.
> People really need to stop saying they have OCD unless they've been diagnosed by a professional.
Self-diagnosis is always a dangerous thing, but I think it includes a big spectrum of behaviours, from "I saw a TV show once about X and now I think I've got it" through to "I've read the DSM-5 and dozens of books and papers on X and I think I've got it". In both cases, the person could well be wrong, but arguably they have a significantly greater chance of being right in the second case than in the first. (And a lot of the time when people who engage in self-diagnosis get it wrong, they actually do end up diagnosed with something, just not the thing they expected.)
Speaking somewhat personally – I've listened to school teachers and psychologists tell me all these things our son does which are "symptoms of autism" and I'm sitting there the whole time thinking to myself "what's 'autistic' about that, I did that too as a child, I even still do that as an adult?" That's not saying that I do or don't have ASD – I've never sought a formal assessment of it for myself, maybe one day I shall, maybe I never will – but my suspicions that I might have ASD probably have somewhat more weight to them than "oh I saw a TV show about it once and now I think I have it".
It's hard to live with moderate asperger syndrome, because you typically look and act normal, but are actually positioned in uncanny valley of behaviour. You try to act normally, but your responses are off enough to be mistranslated by others. You are expected to behave normally but you are missing those expectations. People who are visibly disadvantaged have lower expectations on them from the start.
>it's not something you use "neurodivergent" with seriously.
what do you use neurodivergent with seriously. I would think not being able to read a room is a big problem?
>Like generally there's a lot of disability chic or identity these days; but moderate autism makes it incredibly hard to act in daily life in the same way moderate OCD does.
is it incredibly hard to act in daily life with moderate autism, or is having moderate autism and complaining about its difficulties an example of disability chic or identity? It seems like you want to say it is the latter, but phrasing like 'incredibly hard' make it seem like you couldn't possible mean that.
Having moderate forms of autism is incredibly hard, yes. Severe forms you would need a caregiver and medication for the rest of your life. It isn't just socially awkward behavior or insensitivity, and there's a temptation to medicalize or self-diagnose behavior that way.
Disability chic is medicalizing things that more or less are normal behavior. I feel like with autism people try to make an identity or medicalize some normal traits. I keep using OCD, mostly because I do worry I suffer from it. I am aware of the irony, but i do this more because i suffered from signficant abnormal traits like checking compulsions; hitting a pothole and immediately being afraid i ran someone over, etc. Worrying that you didn't lock a door despite tugging on the doorknob 6 times before you left.I have it light because I don't need drugs to manage it and I'm able to function somewhat in life (though as an adult i worry how much of who I am was because of it)
There really isn't overlap with anything else; like people misuse OCD to mean "neat freak" or forgetful or what have you. Autism though people seem to have some of that; I mean, my customer's son has to be told to not get in people's spaces while many non autistic people may stand too close. It's harder to untangle.
First, I relate to your feelings of minimizing your own experiences, and your impulse to minimize others’. That’s not just how I felt before I was ready to get help, it’s something so ingrained in me that it’s a repetitive conversation with my family and loved ones since I have.
Second and more importantly, if you do have those symptoms I sincerely hope you’ll consider talking to a professional. The worst thing that happens is you’ll waste a couple hours. The next worst thing that can happen is you might make some sense of why your brain is the way it is, and it might lead to some peace. It’s all up from there.
That said, while I’m not an expert on the topic, some of the way you responded is right in line with what I’ve seen people with diagnoses express as harmful. I’m sure you mean well, but ASD presents in a lot of ways. Many which are not nearly so debilitating as what you describe, or more to the point, not debilitating in the same ways. The fact that it’s such a common misconception that it is so debilitating across the board is stigmatic.
I haven’t experienced this disability chic, what I’ve seen is the opposite: people afraid to find out because it may be socially limiting beyond their natural limits.
It’s possible that what you see here is a reflection of high incidence of what you call “high function” but nevertheless also a high incidence of ASD in tech communities.
I hope you’ll consider the possibility. I hope you’ll also consider that it took me a full day to work up the nerve to address your response, and honestly it’s such a sensitive subject that I’m probably going to have to stop looking at my phone for the night because I can’t bear whatever potential negative reaction might be coming. But I couldn’t bear leaving it unanswered even more.
My suspicion is that the reason she was often complaining about her heart was that she in part knew that there was no need to be worried about it.
Openly choosing to recognize the existence of a dragon in your life require either bravery, desperation, or finding a costume to put your cat.
I am not specifically replying to you, I was just stimulated by the topic, but I find it ironic that given a debilitating condition being outspoken about it could maean being of two very different end of a spectrum of experiences.
Are you familiar with the concept of broad autism phenotype (BAP)? A person who has more autistic traits than the average person, but not enough traits (or are not sufficiently impaired by those traits) for an ASD diagnosis, has BAP. Someone who thinks they–or someone else–has ASD in the absence of a formal diagnosis–if they are wrong about the person having ASD, they probably are actually picking up on the person's BAP traits.
And how does the experience of BAP and ASD differ? Well, they are just different positions on a continuum–people with BAP have similar experiences to people with ASD, albeit with less intensity and/or less impairment. And the line between them is unclear and subjective, different clinicians draw it in different places–whether you end up with the diagnosis can depend on factors that have nothing to do with you personally, such as the diagnostic practices and clinical culture of the clinicians you end up seeing. (And the line is moving – a lot of people diagnosed with ASD today would not have received that diagnosis if they'd presented with the same symptoms 20 or 30 years ago.)
Stressful environments often exacerbate people's autistic traits and interfere with their own strategies for managing them. A series of stressful life events can lead a person to a situation in which they end up being diagnosed, whereas if their life had taken a more leisurely turn they might never have been diagnosed – even if their innate traits are exactly the same in the two scenarios. One of the key criteria for diagnosing ASD (criterion D) is clinically significant dysfunction, and dysfunction is highly environmentally determined (unsupportive environments result in far more dysfunction than supportive ones given the same underlying condition)
> If it's significant enough, it's not just someone being brisk or unempathetic in the same way OCD doesn't mean being a neat freak.
BAP is subclinical ASD. Subclinical OCD is also a subject of study, although unlike BAP it doesn't have a distinctive name. A lot of "neat freak" people may actually have subclinical OCD. And subclinical OCD and clinical OCD are on a continuum with each other, with a subjective and varying dividing line between them, just as subclinical and clinical ASD are.
https://news.ycombinator.com/item?id=26537443
I mean, there is no "neat freak" trait; that's something people who don't have OCD use because they think that's part of what it is. It's more intrusive thoughts about contamination, and there isn't a spectrum of those traits. Like you can't really "train" yourself to not be contaminated, in the way autism people talk about training to deal with social conditions. Trying to argue against it reinforces the behavior. It happens despite you knowing its totally irrational
I think I get BAP if you mean "the condition isn't severe enough to significantly impair your life," but I can see similarities between my checking behavior and people suffering the same but worse; I'm just fortunate enough that it doens't occur frequently. The talk about autism though is a different kind of talk; the moderate or severe sufferers are different.
Like the person I mention never got better or could use coping stuff; he would if anything just end up unable to talk possibly because he was medicated sometimes. I understand I'm not a clinician, but there's a lot of "spectrum" behavior in things now; you have gender spectrums, sexual spectrums (asexual, demisexual, sapiosexual), and I'm not sure the concepts aren't just medicalizing normal variation or individual temperament. I wish i could be doing this for me, if anything.
There is a continuum of intrusive thoughts – the continuum of frequency and intensity of those thoughts, the continuum of how easy it is to move on from them, etc. And a single individual can move back and forward along that continuum over time, in response to life events, development/maturity/ageing, and other factors. We say they have OCD if (a) they have enough frequency/intensity/etc of those intrusive thoughts, (b) the intrusive thoughts are sufficiently impairing in their everyday life, (c) there isn't some other disorder which better explains those intrusive thoughts. We draw a line on the continuum, and say this side is "OCD" (or maybe some other disorder), and the other side isn't, but that line is inevitably a subjective clinical judgement call
> The talk about autism though is a different kind of talk; the moderate or severe sufferers are different.
You mention "moderate" and "severe" – what about "mild ASD"? I guess what used to be called Aspergers syndrome?
> Like the person I mention never got better or could use coping stuff
You can't draw a lot of conclusions from a single person. You can't say that people with milder, less noticeable symptoms don't exist.
I've spent a lifetime learning a rulebook by trial and error that everyone else just seems to know.
It's absolutely maddening then the rules suddenly change for no discernible reason, often with little warning and grave consequences with no second chances for screwing it up.
It's why what people call 'cancel culture' scares the snot out of me, I'm deathly afraid I'm gonna say or do the wrong thing, and not really have a way to respond to it, and pay some sort of heavy toll. I'm okay with free speech having consequences (its the only way to ensure we can actually have speech mostly free of government regulation). I just wish those consequences were not applied for things deemed ex post facto (often by decades) to be violations of social norms.
But there is a certain amount of mental exhaustion from having to filter everything I say outside of some very very narrow circles, lest I say something that could be deemed in the future to be 'problematic'.
The larger issue I see, is our current focus on peoples actions in the past is it leaves no room for personal growth or to change views, it if anything hardens people views and perspectives - if someone gets no credit for getting better about something (like use of pronouns, or whatever else), there is no incentive to improve.
Many people (including myself) have difficulty with certain social cues and expectations. Many of us can be offputting or come off as overly direct or disrespectful. Where we diverge is when and how we address that fact. Do we (only) lash out and expect the world to accommodate our conclusions, or do we (ever or readily) reflect on that conflict and try to live in some kind of shared world?
Obviously what I’m describing is a spectrum, not an absolute. But if you’re trying to understand whether someone on the spectrum is a jerk, your answer is “how much do they use their social faculties to navigate sharing a world?”
Which is pretty much the same measure as anyone not on the spectrum.