Hacker News Reader

Comment by dkarl | Hacker News Reader

I'm curious why people find the diagnosis to be so important. I can't at all imagine identifying with the sentiment, "Nothing is wrong with me, I’m just autistic," as one of the women in the article says. When I go to a party with my girlfriend, I want to come off well, if only for her sake, and I would like to have some interesting conversations, and maybe (very optimistically) to meet someone I can share an interest with, since some interests can only be pursued in a very limited way by one's self. I would like to become closer to people I find interesting or admirable. I would like to be able to offer people the pleasure and comfort of a friendly greeting and conversation. These are things I find very difficult, and I can't imagine a diagnosis erasing my regret at mostly failing to do these things, or eliminating my desire to achieve just a little bit more success at them.

My therapist suggested that Aspergers might help, along with other factors we had already identified, explain a lot of my childhood experiences, so I asked her if a diagnosis would give me a new way to work on my current issues. She said no, given my current status, it wouldn't affect our approach, just our retrospective understanding. Given that, I didn't quite care enough to spend time and money meeting with a specialist who could verify her suspicions. I might do it someday just out of curiosity, but I can't imagine it giving me any sense of relief or validation. My deficiencies are my deficiencies, with or without a diagnosis. Too often someone who encounters me leaves thinking I don't like them, and I know their natural tendency will be to fill in the reason with something they don't like about themselves or something about themselves that people harbor prejudice against. I hate that, and a diagnosis won't stop it from happening. A diagnosis won't make people think of me when they're planning something. A diagnosis won't give me the right words when someone has lost a loved one. I've put in a lot of work and made substantial improvement, and unless a diagnosis can help me progress further or faster, it just doesn't mean anything to me.

View on HN

I'm Autistic. Diagnosed at the age of 16 with moderate-severe Asperger's in 2001. I struggled all throughout middle-school high-school and even some college to understand other people and to make friends. Middle school was the worst, because I was endlessly bullied, very depressed, extremely lonely, and constantly told that I was "weird".

Before my diagnosis I remember breaking down in my school's counselors office begging her to teach me how to make a friend. It was a lottery based "art school" because my 5th grade teacher thought I would be a good fit there because that's where other "weird" kids were. I hated art, but I went anyway on the advice of my mother. By breaking down, of course, I mean crying hysterically just trying to reach someone to tell me how I could not be doomed to a life of bullying and loneliness. She told me "The best way to make friends is to be a friend." That was her best advice. It was completely useless to me. I thought "What does it mean to be a friend?".

During that time I saw countless psycologists, and was diagnosed with ADHD (wrongly), major depressive disorder (wrongly), and bi-polar disorder (wrongly). I was doped up on so many experimental medications that I have completely forgotten my life from the ages of 12-17. At some point my mother gave up on me and put me in foster care for 2 years. I spent 9 months of that time in jail for doing some pretty scary things. Namely burning down a 3000 gallon trash can (which I did for attention), and my attempt to commit suicide by jumping in front of a semi, which failed and got the police called on me. I tried to commit suicide by cop, which also failed.

I ended up in a couple psych wards. Once at an awful, horrible place called Fox Run, a few others in between, and then finally at a place called Parmadale in Cleveland, Ohio. At Fox Run, the doctor's decided to do an experiment and take me off all the drugs I was on so that I would "reset" and so he could properly diagnose me. He didn't get the chance but he told my social workers that he was concerned that I might be autistic and misdiagnosed. So when I arrived at Parmadale they disregarded my entire history, and evaluated me as I presented there. I was diagnosed with Autism 2 months in.

Later my brain would be used in a series of studies at the OSU Medical Center on diagnosis through brain scans. I recently found out these scans are in several published papers on the subject.

Anyway, Parmadale focused on rebuilding my self-esteem and focused on teaching me social skills, practices and techniques to overcome my disability. I haven't taken any medication since I left that facility at 16 years old. I went onto graduate high school (with honors), and I have a degree in Video Game Design and Development from Fullsail University in Florida. I've worked in software and startups for years, doing everything from interactive media, to web development, to machine learning, to whatever is next. It's taken me several years of practice, but most people I know both personally and professionally now have no idea that I'm autistic. I fake it very well. Occasionally I meet people who tell me later that they had no idea.

Things could have gone very differently without a diagnosis. I am certain that without a diagnosis I would have ended up dead or in prison for a very long time.

So yeah, diagnoses is very important. For many people with this condition it can be life and death. For me it was at least. I'd rather have a million people who are misdiagnosed or just awkward and misrepresenting themselves as having autism than a single unfortunate teenager out there struggling with this disorder and having no idea how to overcome it. Awareness is everything.

As an autistic person it makes me concerned to hear others gatekeeping on this issue or seeing it as the new ADHD. That might be the case, but before you disregard it, please think of that 16 year old kid acting out, lonely, depressed and misdiagnosed because no-one seems to know what's wrong with him. Then ask yourself whether or not that diagnosis and label is important and could help.

To fix any problem, you must first understand what the problem is.

My name is Raymond Chandler III and I am Autistic.

You are right about the importance of understanding problems.

But in your story, a lot of the problems came from people giving you (wrong) diagnoses. dkarl is saying what works for him is just working directly on the constellation of traits he has without looking for a diagnosis. True, things got much better for you when you got the right diagnosis of autism. But as i14ng points out below, autism is "just" a name for a for a constellation of traits similar to dkarl's.

It sounds like your case is a lot worse than dkarl's so I believe you that naming the syndrome was a good thing. But overall, would you have been better or worse off if society just made fewer psych diagnoses and you never had the right or the wrong ones, but people just helped you work directly on your traits?

> But overall, would you have been better or worse off if society just made fewer psych diagnoses and you never had the right or the wrong ones, but people just helped you work directly on your traits?

I don't think it's worth speculating on the past, on whether one approach would have been generally better than the other. Hindsight is 20/20, right?

I do believe in one aspect of the argument, and that is one of empathy. If you see someone struggling with something, or they are exhibiting a "trait" that you think isn't normal, then finding a way to help them is a worthy goal.

I think the problem here is trying to understand and define what is "normal" and what "traits" are worth looking out for. This is where things start to devolve in philosophical disagreements. As other commenters have said in the thread, there is a difference between being socially shy, having extreme social anxiety, and being autistic. Even in the realm of the autism spectrum you have different issues and presentations to address. When is something actually a problem? How do you identify the problem, and then how do you address that problem?

I don't think it's as black and white as we want to believe. I think labels and diagnosis can help, and they can hurt. The most important thing is to be aware, and to have empathy and compassion for others.

Thanks for your honesty, man. This was an incredible read.

Man, you ticked off everything before you even started a bucket list (good and evil!).

I'm happy they gave you a reset at Parmadale after all that shit.

You write you're faking it very well in personal and professional life, and I wonder, if you'd act like you are, how would you tell people anyways before they'd just stop talking with you.

Well, I have had a policy of hiding and denying it for awhile because I fear professional reprisal or being treated differently. There are very few people in my circle of friends (and even relatives) that know I'm autistic, again because it's a deeply personal thing and because I don't want to be treated differently from others.

I've written about this on the web in the past, but then would go back later and edit or delete a post because I didn't want people to trace it back to me personally. I think I'm done with that.

I think people need to see that having moderate Autism isn't a social death sentence with the right treatment and hard work. That's why I attached my name to this post. If people want to stop talking to me because of it, then that is on them.

Professionally you'll be put into situations that you are just not cut for, so you better tell them before they get disappointed. I mean, I'm doing this programming for more than a decade, somewhat expected by the boss (who I worked for before I realized me being an aspie) to guide a team in a nice and friendly manner (I don't know, is that all just about sending smiley faces on slack? I work remote, with language and timezones between us).

Back in the early naughts I had programmed a blog-software (before know what blogs are) and used it for my ramblings. Someone from my class (I'd say he was in my circle, not sure if he'd considered me a friend, in retrospect) discovered it and one day said something like "suicide is a form of self-critique". I don't think my writing was that bad.

Congratulations on your choice! I don't think there's anything wrong with having autistic business partners, employees, lovers, spouses, children, relatives, or friends. Anyone who does is ignorant and/or ultimately not worthy of your time. Autism is not a death sentence of any kind. High-functioning autism is often barely noticeable in adults, and more severe forms often not crippling either. You won't stop being autistic, but you'll learn how to cope and make the most of life.

All the autistic people I know are actually quite affectionate too -- more than non-autistic people. That's just anecdotal, I know. For at least one person I know, I think that's quite a gift.

I just want to echo your story because it is almost identical to mine (right down to the incorrect diagnoses). I was bullied to the point where I developed a colossal thrombosis in my arm. We had no idea until I was 16, which is when my parents became aware of these types of issues.

I was lucky enough to get off the meds extremely quickly (2 weeks as I recall, I told my mother I hated them - she took me off after noticing how lifeless they made me). I was lucky enough to move countries, to a new school with fresh schoolmates and friends - somehow a school with the most beautifully accepting people you've ever met. With just that one chance that "normal" people gave me, I turned completely and you simply wouldn't believe that I am autistic today.

I've overcome a lot less than you and I am proud of it, I can't imagine how proud you must be.

I am happy to hear that you had a chance to attend a new school with accepting and empathetic people.

You know, after Parmadale something similar happened with me. I ended up moving in with my Dad in Indiana and attended a new community high school out there. I was still one of the weird kids (and hung out with the Goths and Nerds), but the bullying stopped and I had a chance to be happy and to focus on schooling. I think a lot of who I am today is a result of that decision to be with my Dad for awhile and to be given the chance at a fresh start.

> I've overcome a lot less than you and I am proud of it, I can't imagine how proud you must be.

I wouldn't sell yourself short. ;p Anyone who's fighting a personal struggle no matter how big, or how small should feel good about winning. I think telling others that these battles can be won has the benefit of reminding those still struggling that they can win too. :)

I'm proud of you!

I'm shocked that nobody commented on the horrible way you've been treated: misdiagnosis, bullying, being labeled "weird" and given poor advice even by your own teachers, being experimented on and then even incarcerated.

Why are people accepting this events so lightheartedly?

Because kids are horrible and there is no way to fix this. Anything short of Orwellian surveillance and super fast responsiveness that is - or segregation which is wrong for other reasons. Or reducing class sizes to less than 5 kids each and keeping an edge directly on them even during breaks. Unworkable for theoretically economic reasons.

Teachers are not really equipped to deal with it either.

Out of 6 forms of abuse I mentioned five were carried on by adults.

Hi [redacted]. Thank you for sharing your powerful story.

A loved one is going through a similar experience (though struggling with the schizophrenia spectrum). I would love to ask you a few questions but couldn't find any contact info in your profile here.

Is there a way that I can get in touch with you? (My email is in my profile; if you send me a short note so that I can have your email, I'll followup).

I particularly curious about the experiment they discussed at Fox Run, with taking you off all the drugs to reset you for a proper diagnosis. Did they try it? Did it work? Is this a standard diagnostic procedure?

Thank you.

I'm sorry to hear of your loved one who is struggling. I hope they are able to find some peace and a way to live a happy and fulfilling life.

I would be happy to answer any questions you have but your email doesn't show up for me on your profile. The easiest way to reach me would be on reddit. Send me a PM. My username is kitanata2.

> I particularly curious about the experiment they discussed at Fox Run, with taking you off all the drugs to reset you for a proper diagnosis. Did they try it?

At Fox Run they did take me off all the drugs I was on. Some were weened off over the course of a few weeks, and some were just ended. I believe there was a concern about the abruptness of ending the medication potentially causing epilepsy. The withdraw was terrible and took weeks to get past. I spent many days in a corner twirling a pencil and being "spaced out" during that period. There isn't much I remember about Fox Run expect a rather traumatic experience when I first arrived (which I don't want to discuss publicly), and then a positive that the food there was excellent. Some of the best scrambled eggs I ever had. :D I find it better to remember and focus on the good things, rather than the bad.

> Did it work?

That depends on your definition of "work" here. The goal I think was to remove me from medication, and then observe me for diagnosis because the medications I was on (and there were a lot of them) caused behavioral changes in me. Fox Run didn't actually do the diagnosis of me. I believe that occurred while I was at Parmadale. I am sure that had my diagnosis been different, they would have placed me back on medication to address that specific diagnosis, but it was determined that I didn't need medication because I was autistic and not mentally ill as previously thought. I want to be careful here. I didn't need medication. That doesn't mean other people don't need medication for their specific diagnosis. I am not a doctor, but I think generally taking people off medication is probably a pretty risky proposition.

> Is this a standard diagnostic procedure?

I don't know. I'm not a doctor. :(

Thank you for your touching honesty.

I have never had a formal diagnosis, but I have gradually come to conclusion that I have traits which are probably best understood as autistic.

For me, it was freeing in that allowed me to understand why I was sometimes failing in some areas and that it wasn't just a personal failing on my part.

It's also practically useful as reading descriptions of other autistic people's experiences allows me to predict when I might struggle with a situation, to coomunicate more clearly about, and sometimes to recognise that feelings (of e.g. anxiety) are irrational and don't necessarily need to be acted on.

Furthermore, by reading I can come to understand the differences between myself and neurotypical people and come to a learnt understanding of societal norms that are self-evident to others, thus allowing myself to interact better with others in future situations.

Of course a formal diagnosis isn't necessary for any of this. But for some it might be the easiest way to realise that they are in fact autistic.

This, a thousand times this.

I've often struggled in social situations, I've had problems with friends, and I've had friends simply laugh at me "Oh my god, you're so strange some times" and just take the piss out of me and the things I do / I've done.

Sometimes it hasn't mattered, other times it's really bugged me as I've not understood why I'm the one at fault / why I'm the weird one, and why it's not them that's weird for not thinking the way I do.

Getting informally diagnosed has helped heaps, and resulted in a lot of internal turmoil being significantly subdued. I'm a lot calmer and a lot more secure in my sense of self.

I still operate with a "mask" or "game face" in a range of social situations to avoid standing out like a sore thumb, but I no longer feel the need to ply myself with masses of alcohol to drown the inner turmoil, and I no longer fear the occasional inevitable moment where I'm going to put my foot in it, as I now have an easy narrative to jokingly explain my faux pas away ("oh my gosh, I can be so aspie sometimes, sorry!").

I also no longer obsess about events to try and better understand where things have gone wrong, again caused by wondering "what's wrong with me?" as I now understand that there's nothing wrong with me, I'm just wired a bit differently.

I don't feel the need to get a formal diagnosis, as I now feel like I finally understand myself. Ultimately, life just feels better now.

I'm curious about your "mask" statement. I have that same feeling, and experience with alcohol.

Do you ever imagine yourself to be a robot? Or do you memorize and rehearse things to say in social situations?

I often feel like I am operating a virtual machine at social gatherings. I tunnel in and give myself commands to operate like a normal human being, but I take absolutely no pleasure from the social interactions. I also get EXTREMELY tired, very quickly, even though I am able to function for a brief period at a fairly high level.

I don't think I actively think about it as rehearsing lines, but I tend to pick up "catch phrases" from friends very quickly and easily which influences the behaviour people see from me.

My "mask" is more me playing a character who doesn't have these issues, who understands social cues better and is able to respond in a more socially acceptable way. It's a logical step change in my mind, but ultimately a draining one. After too long, I just need to be left alone for a few hours to recharge.

I am constantly 'running a social simulator' in my mind. I was diagnosed as autistic a few years ago in my mid twenties.

one sim game i wouldn't play. and i'm german :) (we do love our sim games)

I find the cognitive load required for me to socialize "normally" to be extremely exhausting after a couple hours. I try to, like George Costanza from Seinfeld, go out on a high note. That is, leave social situations while they are still going well.

I'm not the OP, but I associate with everything they said, so here's my take if you're interested:

> I'm curious about your "mask" statement. I have that same feeling, and experience with alcohol.

Same, but I still drink a lot. It helps clear my mind. It's really apparent when two distinct groups of friends meet and the masks that I used for each set (which tend to be different) need to be reconciled. That can be uncomfortable.

> Do you ever imagine yourself to be a robot?

Oh hell yes, when I was younger (I'm nearly 40 now) especially. I desperately wanted to be a robot. Now, I mostly just love robots, and have built them (https://sendcat.com/dl/LcVKl5kWv6LJZEYusgVq9bLoieURiffZX7cKa...).

> Or do you memorize and rehearse things to say in social situations?

Kinda, but not in the "rehearsing a talk" sort of way. I do pick things that I've heard and apply them in other similar social situations though.

> I often feel like I am operating a virtual machine at social gatherings.

I've had that feeling, also that it feels like a game at times. Interestingly it feels like I'm creating a neural network of how what to do and say, but not the one in my brain, one of my own making.

> I tunnel in and give myself commands to operate like a normal human being, but I take absolutely no pleasure from the social interactions.

I think at this point playing the game has become almost transparent to me, it turns out I'm pretty good at it. I've developed a set of behaviours that work in most situations I find myself in (user groups (talks, the bar after), conferences, weddings, etc. etc.) and I do enjoy the friends I've made at the local Ruby and Go groups.

I do still have to force myself to do certain things though. Ask about people etc. Switch the conversation from what I want to talk about to them.

> I also get EXTREMELY tired, very quickly, even though I am able to function for a brief period at a fairly high level.

Social situations tire me too, though I can definitely manage full conference days or weeks of company meetup if I push myself. Towards the end I'll just spend hours by myself recharging, put on a smile and throw myself out there again.

It's tiring, but ultimately rewarding. I've made friends, I've had good jobs etc.

I also find it very helpful for intimate relationships. If strangers think I'm an oddball, well, no big deal, but sending wrong signals to my wife is a bigger issue that can be worked through with some mutual understanding.

The diagnosis itself isn't important per se. The important thing is becoming aware that you are autistic, thus opening up a whole community of people who have had similar struggles to yours.

There are many aspects of an autistic's life that a non-autistic simply cannot comprehend, and so it's unlikely that anyone but another autistic would have figured out ways to deal with them, and how to better fit into the neurotypical world.

I also guarantee that you have many behavioral quirks and ways of thinking that are VASTLY different from the majority, and that you're unaware of them because you haven't yet recognized the difference from a "normal" person. Learning these things makes other peoples behaviors and reactions to you a lot less baffling, and is the first step in improving relationships.

The sheer volume of literature and people that become areas of interest and information once you are aware of your autism is what makes a diagnosis (self or professional) worthwhile.

Well, that's the thing. I don't really have those. According to my therapist, I wouldn't be diagnosed based on my behavior in the years she's known me. However, the stories I've told her about my childhood seemed pretty striking to her, and the outward manifestations of mild autism often diminish over time, so she suggested it might have been a significant factor in my childhood without being apparent at this point in my life. Hence the need for a specialist to diagnose me.

That's fine. My post was was in response to your question "I'm curious why people find the diagnosis to be so important."

People find the diagnosis important because it leads them to information they need in order to understand themselves better, and to improve their handling of the world and people around them.

Many people struggle with the idea that they're different than others, especially in ways that society in general considers "less". "Less socially adept", for example.

With a professional saying that they have a condition that's beyond their control, and labeling it for them, it helps them say "I'm different, but it's not my fault."

It shouldn't matter. Be different if you want to. Don't give in to peer pressure.

But that just isn't how people work. Most people actively want to be liked and to fit it, even if it's not in their nature to do it effortlessly. And it bothers them when they aren't doing it well.

Be different if you want to. Don't give in to peer pressure.

I think it was easier when I just saw it as peer pressure. In fact, I think the teenage maelstrom of awful social bullshit made it too easy for me to hope that maybe I wasn't the problem. Then everyone grew up, people got a lot nicer, and I had to face up to the fact that I was constantly screwing up social situations that should be very easy for everyone involved. Encountering someone friendly at a social event who wants to talk to me and is curious about where I'm from and what I do. Seeing someone who feels awkward and out of place in a situation where the right words from me could put them at ease and make them feel welcome. After talking to me these people can feel less comfortable than they did before, and not eager for a second encounter. A poor social performance can undermine good feelings and compound bad ones. When I was a kid and was a misfit for a lot of reasons, many of them positive, I could frame it as simply "not fitting in," but now I have every advantage and every opportunity and I realize I still have to be right on top of my game to avoid bringing bad feelings into the world for other people.

You should never be too hard on yourself, but putting labels can also be dangerous, as people often use it as an excuse to not work towards improving themselves.

A lot of mental disorders exhibit co-morbidity with depression. When a person grows up comparing themselves to their peers, every time they fail at something that others seem to do effortlessly, they tend to think less of themselves.

Why can't I do what they can? Without a diagnosis, the answer to that question can be "because I am a failure as a human being", leading to erosion of self-worth. But being able to answer "because I have a handicap" (due to the mental condition) helps think more constructively about how to work around the handicap, rather than just expect to be able to overcome it.

In this thread, there an insightful comment that reads: it's like realizing that you are short... after decades of being told that the only reason you can't reach as high as most people is because you are lazy.

When you said "people often use it as an excuse to not work towards improving themselves", that is exactly what the author of the comment meant by "being told [that they're] lazy". No matter how much a short person "work[s] towards improving themselves", they will not get taller. They instead find ways to work around the issue, like carrying stepladders with them.

Keep in mind, that if we had never invented glasses, a huge swath of the world's population would be considered to be handicapped. And the ones that weren't, who have only experienced poor eyesight due to dust or tears in their eyes (temporary conditions, just like feeling sad would be in comparison to depression), they could very well share your attitude, and insist that people just need to "look harder".

> A lot of mental disorders exhibit co-morbidity with depression.

> [...]

> In this thread, there an insightful comment that reads: it's like realizing that you are short... after decades of being told that the only reason you can't reach as high as most people is because you are lazy.

> When you said "people often use it as an excuse to not work towards improving themselves", that is exactly what the author of the comment meant by "being told [that they're] lazy". No matter how much a short person "work[s] towards improving themselves", they will not get taller. They instead find ways to work around the issue, like carrying stepladders with them.

Or summarized more concisely: One needs a diagnosis because other people are simply a##holes.

Sadly I've found that post-diagnosis, at least when it comes to something that can be 'hidden' pretty well, like Aspergers, even just mentioning the diagnosis often makes things worse (especially around said assholes).

People should be told they are different, and to embrace their strengths and weaknesses, not that they are handicapped. In the end we agree on the solution, I'm just saying that explicitly labeling the weakness can be harmful. It can also lead to further marginalisation by other social groups. Additionally, it is hard even for psychologists to say which exact behaviours can be attributed to autism and which to personal development.

It would depend on who's doing the labelling. I think I agree with you in that society doesn't need to label them as handicapped.

However, I was thinking more about people labelling themselves internally, which is what the linked article focuses on. In that case, thinking of one's self as handicapped can be beneficial, which is what the article presents example of.

Since there is a medical professional involved in the diagnosis, they should be able to steer the patient towards the mindset that would be most beneficial for them, given each individual's circumstances. Repeated sessions work towards helping psychiatrists figure out, as you say, "which exact behaviours can be attributed to autism and which to personal development", and they can advise accordingly.

Minor nitpick: you said "psychologists", when "psychiatrists" would be more accurate. The latter are medical professionals who have gone through at least 14 years of study and practice, including a residency at a hospital, and they are the ones who are able to diagnose and prescribe medications. They are doctors, in the full sense of that word. Psychologists are not medical professionals (but that doesn't mean they're not useful).

> With a professional saying that they have a condition that's beyond their control, and labeling it for them, it helps them say "I'm different, but it's not my fault."

I consider the mistake rather in the assumption that there is free will. If you simply get free of the dogma that there is free will, something like "fault" simply does not even make sense to formulate anymore. EDIT: And you surely already found out beforehand on your own that you are different.

It's like realizing that you are short... after decades of being told that the only reason you can't reach as high as most people is because you are lazy.

Recently diagnosed and this metaphor feels right to me. Indeed, it works the other way around, because I'm "short" I can fit into places others can't (and similarly, my "condition" gives me some extra powers others don't always have).

This is a wonderfully succinct way to describe this. Thank you.

In my experience, anything that allows one to better model their feelings can have significant impact on life. That might come from a diagnosis, though I haven't experienced that myself.

When someone says, "Nothing is wrong with me, I'm just autistic" they might feel as though they can stop predicting how they'll respond in a certain situation—or as a result of a certain decision—based on what others expect of them. Instead they have the opportunity to anticipate themselves without judgement and stop doing things that hurt them.

Or you just get distorted view from the streetlight effect. https://en.wikipedia.org/wiki/Streetlight_effect

I'm not sure which you're thinking of as the streetlight, the diagnosis or normality? Both are saying, "What you're after is here." It's up to oneself to follow the lead that resonates the most.

The diagnosis.

Normality puts bias mainly on the WHAT in "what you're after". The streetlight-effect is about the idea that you think you'll find what you're looking for by looking at the available information.

The concern is: a complex human being with a ton of influences and factors cannot be diagnosed in ways we don't know how to diagnose. So, diagnoses represent the street-lit areas of knowledge, the stuff we understand somewhat. It's possible that the deeper insights come from places that we don't understand well and don't know how to diagnosis (so are like the dark areas where it's harder to find what you're looking for, but where the thing you're looking for might actually be).

The point is: if a diagnosis really is the insight you need, then great. But it's not NECESSARILY. So, it's not true that getting the diagnosis is always worthwhile. There's a cost to spending time getting diagnosed for things and it might be at the expense of not spending time elsewhere. And in SOME cases, the diagnosis doesn't even approach the area where the real issues are.

In short, the street-light-effect says: "if we figure out how to measure something, we can risk ignoring the enormous significance of all the things we don't know how to measure".

The "streetlight effect" isn't about the light it's about the searcher being silly by looking only where things are already lit up even though that's sometimes not where the thing they are looking for is.

Yeah, that could be a risk, especially in the absence of a professional diagnosis. Autism spectrum disorder comes with a ton of comorbidity, meaning that there are a lot of other problems that commonly coexist with autism, and informal online communities for Aspergers seem to downplay that aspect pretty aggressively. There are places where you can basically copy-paste a description of social anxiety disorder and they'll tell you you're an Aspie. I suspected Aspergers might be part of the picture for me, but things like that made me decide to and wait and see if my therapist brought it up.

That and all this acting can be exhausting or make you avoid such situations altogether.

It's notable that people are finally questioning the value of diagnosing every possible thing. In addition to the streetlight effect (https://en.wikipedia.org/wiki/Streetlight_effect), learning a diagnosis that doesn't have a treatment can be just distracting.

The value of a diagnosis depends on the situation. For someone already overly distracted by wondering what's going on, a diagnosis provides relief from that. For someone just living their life and doing all they already can to get by and not worrying about these things, a diagnosis that wouldn't change their treatment/behavior seems just costly.

Why would "someone just living their life and doing all they already can to get by and not worrying about these things" be seeking a diagnosis/treatment in the first place?

Things are generally only considered "disorders" when they prevent you from leading a normal life, with ability of advancing in a career, forming meaningful relationships, etc. For example, Trump may well exhibit the symptoms of Narcissistic Personality Disorder, but it clearly does not get in the way of his life, and he's able to accomplish goals that he sets out. Thus, he cannot be said to have a "disorder".

Also, for many of us, psychiatric diagnosis and treatment isn't "costly", it's free. And if you meant opportunity cost, patients generally have the freedom to stop treatment if they feel that the costs overweight the benefits.

Recently diagnosed and it has been hugely relieving to me.

I have spent most of my life unable to really understand many of the fundamentals of what I now know is "normal" social interaction and now I get to draw a line under it, realize I am what I am, and not waste time trying to "get it" any longer because now I know I'm simply not equipped to. To put a metaphor on it, to me it feels as if I were blind but grew up in a world that never told me I was, but now I know I am, I can be OK with it and cope as best I can.

So, I think everyone's experiences differ. For me, the diagnosis has been a total game-changer.

Well done.

I've often felt the same way about the need to label one's self in order to have an identity. But I can empathize with people who have some kind of undefined handicap/limitation and ultimately find solace in a label and sense of community.

For example, pretty much anyone over the age of 40 who has dyslexia will tell you how cathartic it was to be diagnosed when previously they were just regarded as stupid or lazy. A diagnosis meant that they had a medical condition that they could overcome (or at least manage). If they were simply stupid then it meant there was no hope for them. So their new, better, label mattered.

However, one could argue that pretty much anyone who suffers from any kind of limitation...is suffering from some kind of medical malady. Perhaps, in the future, people we will create new labels and therapies for many of the currently unlabelled, but afflicted, people as well.

I agree with you to the extent that it might not benefit the client to 'know' that their diagnosis is asperger's. It can be enough to be treated for the symptoms, as that's what will happen anyways.

However, for the therapist it might matter more. There's some evidence, for example, that CBT, which is used for anxiety, among other things, can actually worsen the situation in someone who is on the spectrum.

Furthermore, it's kind of unavoidable at this point because a diagnosis is often required for health insurance purposes, as I understand it.

I would be super interested to hear more about the contraindications of CBT for autism-spectrum people. A quick search is only turning up sites that are pro-CBT.

Yeah, CBT is still the default approach, AFAIK, and perhaps for good reasons.

I wish I had the article at hand, but as I recall the problem with CBT can be that it still focuses too much on the mind and thinking as a way to solve things, which can exacerbate the ASD tendency to, well, overthink in circles and get lost in (ineffective) rumination. I think the article argued that DBT could be better in those cases (perhaps because it's even more 'mindfulness/meditation' in nature??).

But I've also heard/read that DBT is kind of the Vue.js to psychology's React.js, in that it's 'New And Improved' but not quite as well-tested.

I agree with you. For all these disorders that don't currently have genetic backing, ie. ADHD, Aspergers' and Autism -- the best way to deal with them is to understand ones' inhibitions and pecularities as merely on the wide and vast personality spectrum that the brain can inhabit. Even if a person acts in all the symptomatic ways that the DSM lists for Aspergers', we can't really say that they have it for sure - we have no genetic test - so we just have to say: "well people with those symptoms, we seem to think they all have the same disorder." But its a huge IF considering that the brain and body are affected by a massive myriad of genes. There's probably a slew of different genes that can cause social inhibition and the usual markers that go along with some of these symptomatically diagnosed disorders. Ultimately, people have tendencies based on their genetics. If the tendencies are severe, we tend to say they have one of these disorders. But there is a whole spectrum of tendencies...so sticking a label on severe cases doesn't really make tendencies a binary thing. Sorry, wasn't trying to lecture. Accept yourself for your tendencies, and try to figure out the ones' you can change if you really want to...like you said, disorder label or not, doesn't really make a difference to what is a fluid and massive spectrum.

https://en.wikipedia.org/wiki/Autism_rights_movement

https://en.wikipedia.org/wiki/Neurodiversity

Thanks for the Autism rights movement link (here I am, an old-fashioned wikipedian of 15 years and still finding new articles).

I though Autism/Asperger has some genetic backing? At least the wikipedia article I link below has quite a list of candidate gene loci.

Here's a quote from https://en.wikipedia.org/wiki/Heritability_of_autism

> Autism concordance in siblings and fraternal twins is anywhere between 0 and 23.5%. This is more likely 2–4% for classic autism and 10–20% for a broader spectrum. Assuming a general-population prevalence of 0.1%, the risk of classic autism in siblings is 20- to 40-fold that of the general population.

We know many cases are genetic but don't have a definitive genetic test.

Heritibility is not hard to determine even if no specific genes are known. Mendel did this with plants even before chromosomes were discovered. So we can say simple things like the odds of offspring having autism - which isn't based on a specific gene but rather the dominance/recessiveness of the underlying genetic factors computed by census/survey/sampling data.

So yes, there is a genetic disease that causes neurological changes, autism - but it isn't correct to label all inward children as having that gene. Symptomatic diseases can have multiple disparate genetic causes - and we usually separate these into different diseases even if the symptoms are extremely similar.

The percentages are confounded by the environment both social and physical fostered by parents. And we don't have enough separated twin studies...

You're right. I was just trying to tell OP that the heritibility evidence we have is not from knowing the exact genes that cause autism. It is moreso from epidemiological stats.

It could be that this tracks with whether you believe you have an "internal locus of control".

There's a spectrum of orientation between "just give me names for parts of who I am so I can understand myself and find a community of similar people" and "tell me everything most people think is wrong with me so I can fix it yesterday". I suspect we all fall at different points along that spectrum depending on the supposed or actual deviation from the norm in question.

Personal example: I don't care that I'm geekier than the norm; it's not something I desire to change though it feels good to know there are others like me. This doesn't change just because I'd have a wider selection of friends if only I learned to have more "normal" interests.

On the other hand, if I have a nervous tick or other part of my personality that the majority of people I see everyday find annoying, I want to know about it and fix it. I don't want to label it and then feel proud of being one of those people. I don't want to start an advocacy group or a hashtag. I want to eliminate that behavior immediately.

Same person, entirely different points along that spectrum.

I'm not an expert but from what I've read, it's possible for an instance of autism to have a different root cause, such as (for example) folate deficiency. Putting the stamp of "autism" on a person can (if not interpreted correctly), lead to easier acceptance of the condition by the patient (which is good to some extent), where in fact a more precise diagnosis could lead to a better outcome.

In society we often interpret certain traits as moral failings, but if we put a label on it and make it a condition those traits become a result of bad luck instead of weak character.

The label has a net-positive value in that it can allow others, and yourself, to forgive more easily. Now if we could just learn to forgive without the labels, that'd be really valuable.

For some reason there has been a common theme in some of the movies and TV shows I've been watching recently, where the characters are dealing with their own history and they or someone else declare that "you can't change the past". I found this wasn't sitting right with me.

People change the past all the time, for tons of reasons. But specific to this topic, a powerful tool in a therapist's toolbox is 'reframing', where you look at your experiences and find some new perspective. You change your narrative to have more compassion for yourself and the other players (or lay blame on someone more deserving) so that you can move past it now.

One aspect of that can be identifying that you had some special need that wasn't met. Or that your parents or siblings did. Everyone was trying but they weren't equipped to give you what you needed, and it was what it was. Especially for newly diagnosed conditions, your parents 20 years ago wouldn't have had access to the info you have now.

So a diagnosis can in some cases help people reframe all of this stuff.

Am I over-generalizing, or are "moral failings" something that autists really can develop?

I agree with you. I think the diagnosis is a double edged sword. It gives people a crutch. Like you, I'm "on the spectrum" but I don't want to know what the technical diagnosis is. It would just let me use my "condition" as an excuse for things (or at least that's how I would use it, and how most other's I've had the occasion to observe do use it).

I find this is the case with most mental health diagnoses. They can be valuable from a treatment perspective, sometimes, but most of the time it just lets someone feel sorry for themselves or excuse poor behavior. You don't get to mope around just because you're depressed, and you don't get to be a dick just because you're on the spectrum.

A crutch is a tool to replace something you aren't able to use. Those who don't know they are on the spectrum don't even know that they even lost something. They get along crawling or hopping around. I'll take that crutch. And all this depression and "anti-social" behaviour, isn't that because of the crutch or lack of it? Being the one who's always trying to catch up will make you frustrated and angry: about yourself and the others.

I think you'd be pleasantly surprised by most psychotherapists. They see their job as helping people feel better and function more effectively in the world, and they don't really distinguish one as the means and the other as the end. Each can be justified in terms of the other, so it's always both. I'm sure you could work productively with a psychotherapist even if they're inclined to be more sympathetic to you than you would like.

I've wondered about this similarly with autism: people refer to their kids as being "on the autism spectrum". Isn't the point of modeling it as a spectrum that we're all SOMEWHERE on that spectrum, it's just that most of us are further in one direction. But there's no binary yes / no that guarantees certain approaches will work well for you. Some things work well for kids with serious cases of the associated disorders, but you might fight that the same approach works better for people who are struggling despite no autism diagnosis. I would think the real approach is to know many techniques and try varying them to see what works best for someone as an individual.

There’s a very popular way of talking about autism as “explaining” or providing a “why I am different,” that to me doesn’t make sense: https://intellectualizing.net/2015/03/31/not-explaining-auti...

There’s a misunderstanding that diagnosis of autism is finding a cause for some traits. The reality of the DSM is that autism literally is a list of traits - a shorthand renaming of the list. There’s no implication that it’s a single condition, or a discrete condition, or has any known cause, or explains anything. https://intellectualizing.net/2013/12/17/book-rethinking-aut...

Naming or categorizing isn’t the same as explaining!

Anyway kind of a pedantic point I guess but maybe autism explains the need to make those :-)

I do think there’s value to finding kindred spirits and community, which categories and names can help with.

Because getting the diagnosis explains what's going on, gives you access to a wealth of resources to understand things that were previously mysterious, and unlocks a community of people with the same condition as you who will understand. These testimonials talk about spending years in the wilderness with no idea why you don't fit in.

I guess I've already been taking advantage of some of the resources. I've read a couple of books by Temple Grandin and read a lot of things people on the spectrum have written online about how they deal with social situations. I started doing that long before I entered therapy on the theory that maybe I'm autistic, maybe not, but either way I should be able to learn something from people who are solving the same problem I am.

I'd argue that that kind of answers your own question, though. In my struggle to understand my issues, I've read plenty of books that offered some help or insight, but frustratingly seemed to somehow miss 'the point', however vague.

The moment I was diagnosed with Asperger's, and started searching for resources about that, I remember being astounded at how all the stories and descriptions were either exactly on point, or at least much more so than what I'd read before.

I've had the same experience with friendships. Most of my close friends, historically, suffered from various disorders, ranging from BPD, narcissism, ADD, chronic depression, bipolar disorder, etc. A big part of what made us 'click' was the different-ness, and yet there was always something lost in translation that wasn't so with most others I know with autism/asperger's.

Clearly, there's a lot we don't understand about ASD. And maybe we'll one day have various ways of labelling subtypes better. But in my experience and those of many people I know, there is something specific enough about ASD (even as a much vaguer label than Asperger's) to warrant a specific label.

I don't have as strong an opinion on this as I thought initially, because I do see that the label can be rather 'heavy', perhaps enough so that the benefits don't outweigh the cost. But at least right now, despite the pretty serious negative effects I've felt 'taking on' the label, I feel I'm better off with it. Maybe that's just something that some of us need to go through...

It seems like for the women in this story they kept being misdiagnosed with other issues, so their experience has likely been different.

I suffered from a wide range of psychiatric conditions as a child/teenager. When I finally accepted my diagnosis, it all made sense. I understood why I was in so much pain for so long and I realized I wasn’t crazy, I just had a few tendencies that clustered together to cause the difficulties I was experiencing.

It’s regrettable that our culture has decided that neurological diversity should be understood in terms of abnormality = deficiency. It would be nice to have a more inclusive society that adapted its norms to the way people really are rather than always trying to adapt people to somewhat arbitrary norms.

"...neurological diversity should be understood in terms of abnormality = deficiency..."

Diversity becomes deficiency (or a diagnosable illness, or whatever) when it interferes with ones' path through life or enjoyment of life. In other words, when it becomes a problem.

If everyone around you is happy behaving socially and you are not, you have a problem.

For sake of argument, if everyone around you is a sociopath and you are not and are feeling empathy and compassion, you'll have problems too, but it's not you who's deficient.

Having a problem doesn't mean your condition need be considered pathological.

By "everyone around you", I meant the majority of everyone else in the world.

The majority is always sane.

If everyone's got the plague does that mean they're all in tip top health? Nope. Festering, bulbous pustules are what they are, and don't magically transform by force of numbers.

The same goes for the tendency to mechanically pigeonhole others - it is what it is, a mania for rigidly organizing the (supposedly) rigidly organizing. It sees its own whimsical image in the mirror and explodes with delight.

That's a naked (and unconvincing) appeal to total-relativism.

I don't find that attitude to be helpful at all in my case. Everything in the official adult world encouraged me to think there was nothing wrong with me. I had the best grades, my teachers loved how good I was at following rules and completing assignments, I did well at sports, and my parents always told me I was great. I was still miserable. My parents did their best to get me to just see myself as "different," even better, but it never changed how frustrating it was that people just looked baffled or creeped out when I talked, and the other kids laughed, or they avoided me. By the time I was in second grade, I was already wondering what the hell was wrong with me, how to fix it, whether it was even possible to fix it. I was not very socially oriented, but I was painfully aware that when I tried to interact with other people, I did not do it like other people did, and I did not get the reactions that other people got. None of that came from a preconceived notion that different is bad. In fact, I grew up in a household with a counterculture ethic and a strong presumption that different is better. It didn't help. It just prevented my parents from figuring out that I had a real issue that needed addressing.

I'm curious why people find the diagnosis to be so important.

Because when it's accurate it offers a biological rather than moral causal explanation, and makes it easier to identify and apply workarounds.

It won't fix things overnight, but it will streamline your cognitive process and with practice you'll find it easier to adjust to other people.

Reply on news.ycombinator.com