I'm sure your diagnosis is legitimate, but also I'm inferring from your comment that you are married and gainfully employed; so it sounds like you're able to build and maintain relationships, as well hold conversations with strangers or non-close acquaintances when necessary.
In years past would any professional have bothered to test someone like you for a disorder?
But practically, the disorder definition above basically would lump the above poster in with somebody who was struggling to hold down a part time job or any social relationships as having the same level of disability. All therapies, treatments, accomidations, etc will end up calibrated for the more profoundly disabled person while being offered to the above poster. Generally, peoples first impression of the person will understandably be based on that of the average person with autism spectrum disorder if they're told they're autistic which will cause them to be pretty profoundly misunderstood.
That's just my take on this.
Or are the people who fail to hold down a job really just morally bad and of low character?
Was it better for people to just be "weird" or "creepy" or "freaks" instead of somewhere on the autism-spectrum?
The judgement of the behavior predated the diagnostic labels.
How has autism diagnosis stopped any of this from happening? People are absolutely unapologetic about calling autistic men creepy in particular.
It hasn't stopped it completely but now you've got a LOT more resources available to use to do something about it. And there are many more who will say something like "hey, you should look into this stuff" instead of just simply shunning and shaming than there were 40 years ago. Especially when spotted in early childhood.
There are no magic bullets. The solution to not being called creepy is, in the end, not acting creepy, same as it ever was. But the diagnostic/psych world can help people find a path to get there. Many of us have been following it for a while now. Do I wish my parents and teachers had known what we know today? Abso-fucking-lutely. Could've started to learn to manage a lot earlier.
Recall the context here of the comparison to those "lacking the talents of these gainfully employed autistics". No shortage of bad names to call them either. Many fewer structured and well-studied support systems.
I see them get despondent that they have a disorder which means they can definitionally are socially impaired and always will be.
As for the parents and teachers causing kids to not be creepy, that mostly consists of them saying stuff like "mastrubrate in your room" and "don't tell strangers you want to have sex with them". There's not actually a competent make autistic people not creepy treatment that's in any way mainstream or widespread (Although if one existed I'd be all ears). If I had to suggest anything, it would be intensive immersion in social situations with neurologically typical people, which doesn't really take a diagnosis.
Like I just keep hearing these theories about how we need to diagnose people with autism to get them resources and treatment but I don't know what these things are. Honestly I see men getting into stuff like looksmaxxing stuff because they're convinced of stuff like their perceived "creepiness" being a result of them being ugly (evidence would support that ugly people are seen as more creepy), and at least something like plastic surgery offers them an evidence-based method to reduce perceived creepiness - which is something the medical system DOES NOT COMPETENTLY OFFER despite the medical system also telling them that they have social deficits. I think the neurosis's being caused by labelling and reification are already doing damage.
I think the thing that bothers me most about autism spectrum disorder is it's seen as a sort of life sentence which involves impairments which by definition are lifetime and you can never overcome, and if you fit these boxes, even if you have no significant problems, you're some successful married computer programmer, you are just fucked for life! Yet when I look at the actual research, I see children going from being clinically diagnosable with a disorder to sub-clinical all the time in followup studies. Yet all we really care about is getting MORE people diagnosed with autism spectrum disorder, as in, it should be our goal to have MORE people labelled as being impaired instead of LESS people because we did such a good job resolving their impairments and making them independent that they no longer had any significant difficulties or need for support or a "disorder" label anymore. Being disordered has become a fucking identity where the more people who have the identity the more we are saving people.
But, if you’re asking about the typical autistic inability to communicate with others, then yeah, 0-1 works as well as any. Just don’t take it as literal or as the only possible set of traits.
… the question is, do you have the right embeddings? ;)
(/s, mostly)
[0] https://neuroclastic.com/its-a-spectrum-doesnt-mean-what-you...
(These are non-rhetorical questions, I'm really not sure about the answers to them myself)
They certainly do. And I don't think we can make meaningful comparisons between individuals in terms of their problems, how they struggle or suffer, etc. For me personally, I don't assume to have it any worse than anyone else, and I always assume that others have deep challenges that I won't ever know about.
> Is anyone truly normal or neurotypical?
Again, these concepts become strained when applied to individuals. It's like the family who has 1.5 children: they don't exist. These are ever-changing labels that we make use of within an extremely nebulous social process. I try to apply them only in well-defined contexts and then throw up my hands in the general case.
> Why do some people's problems get the validation of the medical system and others don't?
I have no idea; in my mind this question is trying to peer closely into the nebula.
Very roughly, because some people can't function without intervention (for loose definitions of "function"). And some treatment (therapy, drugs, whatever) can help them function.
Autism 1/Aspergers is sometimes kind of borderline - some people can function with it, but it can exact a heavy tool on them as a sibling comment noted. Depress and suicide are relatively more common. Why go through life miserable if it's not necessary?
People without autism or other diagnosable issues are generally more resilient. a bad week, one-off negative occurrence, etc won't send them into a tailspin. That's a very real concern with some neurodivergent individuals.
And you do have to remember, it's all a spectrum. And as observers, we don't know what a person is feeling/thinking internally and not expressing.
This whole thought that autistic people who appear to have no problems are all secretly on the verge of not just burnout, but AUTISTIC burnout and will tailspin into the nether at any moment is a recent idea I have yet to see any actual evidence of other than self-report. The entire idea smacks of non-falsifiability to me.
If I told you I had to consciously monitor my tone of voice, and mannerisms, and level of eye contact to pass for normal, and had to silently drill these things in my mind before starting or joining a conversation, that I basically had to be like a method actor and get into character before speaking, what would you propose as a way to falsify or verify my claim?
You're right: it's non-falsifiable. And you'd be right to raise an eyebrow about the idea that keeping it up would lead to clinical depression. Doesn't mean it isn't true.
Theres people who go in and DONT get diagnosed with ASD, but get found out to be having other issues, ranging from endocrine to trauma.
The evidence for treatment is the improvement in quality of life for people who do manage to get help.
The control would be people whose challenges make their lives, and the lives of those around them, harder.
And having raised a “high functioning” autistic son, I definitely saw when interventions helped. And I also saw the struggles my son had that his coworkers would have just written off as “quirky”. Sadly, he stopped treatment, was overcome by those struggles, and took his own life, so at least for this sample of one, yes, the interventions help. Right up until they don’t any more.
Because there are effective forms of treatment available, but are gated by diagnosis because of $reasons. Validation of the medical system enables one to access those treatments, perhaps most important of which is being able to tell yourself, as well as others, that you're having an actual problem and are not "just lazy" or need to "just get yourself together", etc.
Yes. I get that your questions appear to be sincere and genuine, but, yes. Relative to the actual, demonstrable, neurological differences in connectivity and so forth in the “neurodivergent” brain, the overwhelming majority of people are “normal”. Relative to the actual lived experience of “neurodivergents”, the overwhelming majority of people are “normal”.
These kinds of questions are asked by people who simply don’t understand the enormity of the difference.
Much like people who don’t have aphantasia speaking to people who do. And so forth.
Aphantasia is one that I find extremely hard to wrap my head around. The notion that somebody who’s otherwise normal can’t visualize things is really interesting. I have a friend who has it. The only outward symptom is his dislike of fiction and most TV/movies (and you’d only notice that if you knew him fairly well).
I think I _used_ to be able to visualize things. I remember feeling frustrated when I was younger and did a more art because I could never imagine the same thing twice when I wanted to draw it. Every time I tried to think about about it, it would have a different pose or texture or orientation. But even then I think I just had a different "level" of aphantasia. I could never figure out how to use color. I kept to pens and lead pencils for art and couldn't get into painting. Even now, staring at a wall and thinking about repainting it, I cannot visualize it with any other color, much less two or three colors for trim and accents.
One of the advantages, perhaps, is that I don't need to close my eyes to imagine things. There's no point, there's nothing there. I may let my focus drift so I don't get distracted by shiny or moving things. But I can stare at a wall, or go for a hike or a run and just let my mind go wild.
That said, I do enjoy fiction, though I never really get "into" anything in particular. In light of this discovery, perhaps it is because I'm not really able to "visualize" scenes to recreate memorable moments, I can only really enjoy it in the moment and maybe recall a few quotes and descriptions, which are harder to get excited about.
ADHD is simultaneously overdiagnosed and underdiagnosed; the case of your brothers' school could be the former, or correction of the latter (or both).
> mostly the kids who would in the past have been described as lazy, which I find hard to believe to be based on actual neurological differences
ADHD manifests as laziness to observers making snap judgements, so this actually tracks - turns out, some of the specific symptoms that, in the past, would make someone branded as lazy, are actually a disorder.
The problem with calling people lazy is that it's a moral judgement, which sometimes may be helpful as a form of corrective social pressure, but absolutely does not help when "laziness" is a result of a disorder like ADHD; it only makes them suffer that much more.
I'm going to give a pretty out-there answer for this: because they piss us off.
A problem is medicalized when the people who have that problem can no longer be ignored, either because the effects are so severe that their demands for treatment become loud on a societal level, or because the effects naturally bother other people.
We started treating HIV/AIDS only after years of the affected communities refusing to shut up about it.
We medicalize mental health issues because the people with them cause problems for the people without them. It is notable that many mental health conditions have names describing the experience of being around them rather than the experience of having them. Attention Deficit Hyperactivity Disorder feels like neither, but people around someone with ADHD get annoyed that they don't pay attention and move around a lot.
For another example, we still diagnose some children with "Oppositional Defiant Disorder".
Also, saying "this deserves medicalisation" and throwing a label on people doesn't mean you're actually helping. Lets say somebody was masking - how would medicine help them?
I agree about medicine not really being the solution, though. If an environment requires masking all meds can do is suppress symptoms, at best.
Not strong evidence but what exactly is the evidence that autistics are going around masking far more than the average bear? Low social motivation is an old theory for the cause of autistic social behaviours which is a theory which would indicate less masking. I’ve heard all this mask mask mask talk over the last few years, but I haven’t seen any persuasive science.
I should also be clear - I’m not saying autistic men don’t mask, or don’t struggle with masking, I’m saying I can find no convincing evidence that autistic men as a group mask an unusual amount. The diagnostic criteria does not indicate masking as a symptom, just as a potential risk that may confuse diagnosis especially in women by making actual social deficits which actually get you diagnosed harder to detect but not impossible.
For instance, a woman who doesn't react in certain ways to someone's cute baby is some kind of child-hating alien monster.
The man who doesn't react in those ways is assumed to be wanting to do that, but actually masking in the other direction so as not to appear effeminate.
When I'm meeting with representatives of a client, and one of them makes a suggestion that I know won't work, and I refrain from instantly and publicly shooting down their idea and instead I make a show of considering it, then ask them a probing question or two that let them realise the problem with the idea themselves - am I masking? Or am I merely being professional?
When I see something worthy of a compliment and I rehearse it in my mind to make sure it isn't objectifying or creepy, and that it's personalised to them and shows I paid attention to and understood the thing I'm complimenting - am I masking? Or just being charming?
When I'm socialising with people who are talking about their struggles to lose weight, and I in many years going to the gym have struggled to gain weight or visible muscle, but I keep my mouth shut rather than trying to build rapport about our shared inability to reach our target weight because I've tried it and I know it doesn't work - am I masking? Or just showing a normal level of social skills and empathy?
My face is usually flat, and my tone is usually monotone. Most people modulate their face and their tone naturally and don't have to think about it. When I socialize, I have to think about my face and my tone constantly. Yes everyone is doing this at some level, but for autistic people it takes as much effort as the thing the socializing is meant to accomplish, so that part cannot be enjoyed or suffers as a result of the intentional masking.
Another example is I have echolalia, which means sometimes I have an involuntary urge to repeat things that I heard earlier. I also have various tics where I move my body in wild ways that tend to make people uncomfortable or look at me in strange ways if I do them in public. When I'm socializing, I suppress (mask) all of these urges. I'm sure that most people suppress urges to move their body and make noises in public, but not in a way that autistic people suppress these urges -- again it comes down to it being a conscious effort that causes discomfort. I would compare it to having to sneeze for an entire meeting; all you are going to think about is having to sneeze, and the disruption you will cause if you sneeze and everyone will look at you. But it's not a simple sneeze, it's an action that everyone will talk about and gossip about later, something that will ostracize you.
Another thing I do when masking is more like mirroring. I'm constantly monitoring the situation to figure out how to respond, since I can't use the content of people's words I have to use contextual cues to figure out the appropriate way to respond. For instance I can know a joke is being told by the way someone is telling it, but I might not be able to tell you why it's funny based on the content. Still, I can laugh at the joke but I'm not laughing because I found it humorous, I'm laughing because I discerned the appropriate social place to laugh. And yes people laugh at jokes they don't understand all the time, but for me this extends to everything. I don't know when people are being mean to me, or flirting with me, or scamming me in real time. It takes days, sometimes years of reflection for me to figure out the actual social context of a situation I've been in.
I'm sure all this is true for many people, as I can't imagine socializing is easy for anyone. I do see people who can effortlessly talk with anyone and everyone, and I wonder how they do it, and if they face the same kinds of struggles as me when they go home and decompress. Do they stay awake all night replaying every social interaction from the night before? Do they have to spend days recharging before they can go socialize again? I don't know. But for me it's true to a degree where it makes me never want to go outside again. And that's what makes it a disorder instead of just a quirk or something everyone does.
But it's diagnosed based on behavioral observations, it's not like people get diagnosed with ASD based on brain scans like you would for MS or parkinsons.
Show me the actual proof of this. For something so at the core of modern clinical practice, the utility of diagnosis itself is taken for granted rather than actually proven.
> the utility of diagnosis itself is taken for granted rather than actually proven.
Given the topic of autism, I'm not sure if you are trying to be sarcastic or not.
Here's a question for you. When is the last time mental health outcomes improved in a way which could not simply be the result of reporting differences?
I would say the last time was around the year 2000, when suicide and drug addiction were at all time lows. Every single chance since then, on aggregate, has been useless and the entire field of mental health has completely failed to produce any evidence it has advance an inch this millennium which is absolutely fucking scandalous. I don't know how much oncology improved in the same period of time. Also if you include reported mental health data, people report WORSE mental health now than they did in the past.
Given that, I see pretty much zero reason why the status quo today does a lick to improve people mental health better than the status quo back then. I am just dead stupidly sceptical of diagnosis (at least beyond 2000/DSM-IV levels) as being a source of mental health because not only is it not proven people don't even attempt to prove this.
When the DSM-V was released, the director of the NIMH started the RDOC for research which was nominally supposed to do studies based less on categories like "autism" and more on underlying biological phenomenon, trashed the idea of symptom based diagnosis pointing out it has largely been depreciated elsewhere in medicine, and suggested we might have to get rid of the words schizophrenia and depression because they were confusing things. I think about such things occasionally and wonder if the entire diagnostic nosology we have is basically a fatally flawed system.
So my essential objection is, why medicalise people's identities if there's no evidence it's improving people's outcomes?
20 years in a time of massive social changes? Would it really happen all so quickly? There are million things that could be making things worse. Heck, it could be case that without these treatments it'd be even worse. I don't know if that's true or not, but I'm saying consider the wider environment in which this is all happening.
It's impossible to really be sure either way. Maybe it's all garbage, maybe not. but make sure you're at least trying to look at the whole picture.
Just because things seemingly turned out OK doesn’t mean the treatment was appropriate. In the same way, just because someone manages to “get by” doesn’t mean they don’t need to be diagnosed. It’s just making their life needlessly more difficult whereas they could yave more resources that reduce the burden they have to live with every day.
Just knowing you have a diagnosis, regardless of whether or not you are treated, can be incredibly empowering and helpful. It isn’t a mystery why other people could sit down and study for three hours when I was in college and I couldn’t. I was diagnosed with ADHD, I knew where my blockers were and what they looked like (and continue to!) It gives me a lot more control and ability to manage myself day to day vs. assuming something is wrong with me. The latter feeling can be incredibly demoralizing and even lead to self-destructive tendencies such as a self-medicating with alcohol and drugs. After all: Why bother trying if you’re convinced you’re truly broken? It’s not something that has a name but that other people share this problem with you and manage is, again, incredibly empowering.
It’s like a book where the main character who thought he was a doctor in the asylum finds out he was actually a patient the whole time. A mental health diagnosis forces you to go back and relive every moment with a different perspective.
Many people go through a prolonged period of skill loss/regression. I lost the ability to code for over a year. Took a long time to get to a mental place where that was possible again.
I used to code and commit to Github almost every day. My commit log is almost all green since 2018 when I started using Github, but if you look at the last year or so you can see where I just stopped and it goes dark.
Thankfully within the last 4 weeks or so I'm back to my normal self, so it was temporary, but I don't know what I would have done if my job had depended on my ability to code.
Did you know, up until the 1970s, homosexuality was considered a mental disorder [1] by the psychiatric profession?
Can you understand why many homosexuals felt that they were just being themselves, and that them being themselves didn't warrant inclusion in a diagnostic and statistical manual of mental disorders?
With that thought in your mind, can you see how a happy and successful person who wasn't struggling in any way might feel similarly?
LGBT people had been persecuted from so many angles for a long time, the tools used against them are incredibly varied. Just because mental health diagnoses were (and still are) used as a cudgel against them doesn’t mean the entire exercise of diagnosing should be called into question any more than somebody using a knife to stab somebody should call into question all of us keeping cutlery in our home.
Many autistic advocates are, in fact, advocating for improving society such that autism is no longer a major barrier to success. Until we have that, autistic people often require medical care.
It is perhaps important to also note the recent pushback against autism's equivalence of conversion therapy (ABA).
The traits you are describing here and autism don’t exclude each other. Many autists live well. Some Fortune 500 founders and/or CEOs are autistic. I’m tempted to conclude you are projecting a stereotype, but I might be reading too much into your post.
I've thought of being tested by a doctor but always think "What's the point? How is it going to help knowing?" so I'm curious as someone also well into adulthood if you've had any impact from knowing.
I'm also married and am able to keep a job and function relatively well even though I'm not the most sociable person.
Can I ask candidly, what did you gain from knowing this? Presumably this didn't have much effect on you, since you seem to be fairly successful - finding a partner and getting married and presumably also having a decent job.
Seems kind of like a vanity validation for your wife rather than a benefit to you.
Yeah, the benefits are a mixed bag and subjective but that's why we should normalize self-dx rather than insisting people have to get a medical opinion to be "validated".
[1] https://www.abc.net.au/news/2023-11-26/national-fitness-to-d...
Frankly, the law doesn't make sense given that ASD is not a "medical condition" in the sense of being temporary or avoidable and the act of passing driver's ed and attaining a driver's license demonstrates your driving ability. If you were undiagnosed prior to attaining a driver's license, it clearly did not impact your ability. If you were diagnosed and attained a driver's license without disclosing your "condition" it clearly did not impact you either. It feels more like ASD is being used as a proxy for some other condition (learning disability?) that is not usually diagnosed directly.
IMO anyone fined for non-disclosure should try to take the case to whatever the Australian equivalent of the Supreme Court is. Surely some NGO must be willing to foot the bill.
For instance, I spend a lot of time scripting conversations and I've found if I don't do this it will have a meaningful negative impact on my ability to communicate with people. Almost like if I don't practice setting up the path between a concept and the words, then when I need to talk to other people that connection doesn't exist and I just can't put things to words.
> I recently argued that many Weird Nerds (I called them autistics, but people really hated that)
These are the same thing. The author recognizes that. Everyone recognizes that.
But I draw my ingroup/outgroup boundary broadly enough to include all non-sociopathic humans and several other species; I have zero motivation towards spectator sport; music only holds my interest for a few plays and then bores me; I can "visualise" my sense of balance strongly enough to completely override my actual sense of which way is down; my body self-image is almost entirely under conscious control (as in: I can't be body-dysmorphic because I don't have a consistent morph to dis).