16 ms·

It all made sense when we found out we were autistic

206 points by pbhowmic 9y ago

lisper 9y ago
Aspergers was not a thing when I was growing up in the 70s so I was never formally diagnosed, but I'm pretty sure I'm on the spectrum, and the result was a pretty painful childhood. I managed to drag myself out of it and give myself an education in social skills, and nowadays you'd never guess that I'm Aspie (my wife still doesn't believe me, but I think she's an undiagnosed Aspie herself). Even to this day there are a lot of things that "normal" people do that are utterly foreign to me, like going to clubs or watching sports on TV. My idea of a good time is reading up on quantum mechanics or the ordinal hierarchy. I think mild Aspergers is a lot more common than most people think even today because it is possible to hide it completely, and there's a lot of societal pressure to do just that. [UPDATE] A lot of reply comments are of the form: what you have described here is not Aspergers, it's just normal growing up. Well, yeah, it's not so easy to give a complete description of my situation in an HN comment, and I'm not sure I'd be willing to do it even if I could. I'm not particularly proud of the person I used to be. But I will tell you this: in retrospect, when I was a kid, I was completely oblivious to the fact that my peers were agents in their own right, with thoughts and preferences and hopes and dreams that might be different from my own. That, I am now given to understand, is the hallmark of autism spectrum disorders. But I don't think it matters whether or not I "actually" had/have Aspergers. What matters is that because I was clueless, I behaved obnoxiously (not realizing that I was doing so) and as a result of that I had very few friends. It was intensely painful, and it took many years of concerted effort to change my situation, but I ultimately managed to do it. That is really what I want to convey: whether or not it was abnormal, it hurt, but I was able to make it better. And if I could do it, so can you, regardless of what label we choose to attach to our conditions.
- brabel 9y ago
  > My idea of a good time is reading up on quantum mechanics or the ordinal hierarchy. Haha, same here!! Does it mean I might be an "Aspie" too???
  - bluetomcat 9y ago
    Deep interest about any topic which is considered "uninteresting" or "impractical" by "normal" people. Might be the history of a particular aircraft, or a car, or an event in the distant past. Your brain is consumed by it for completely irrational reasons and you feel obliged to dig even deeper.
    - mercer 9y ago
      One thing that I'd say makes it more specifically an 'aspie' thing is that it's often obsessive to the unhealthy point of severely neglecting other aspects of life, and it can be weirdly temporary. Something like being into sudoku's for weeks on end, and then entirely forgetting about it afterwards.
  - lisper 9y ago
    An interest in geeky things in and of itself is not diagnostic of Aspergers. What matters more is if you have trouble with interpersonal relationships, which I definitely did growing up. Things are much better nowadays, but it took a lot of hard work to get from A to B.
- mercer 9y ago
  I was only diagnosed at around 30, and so I also just kind of figured out how to 'pass for normal'. One of my biggest frustrations when I talk about this stuff is that people will 1) insist I'm not autistic, as a compliment of sorts, 2) insist I'm not autistic as a sort of attack/defense, lest I 'use' it to victimize myself, or 3) start treating me like a 'broken' person and assigning all 'oddness' to aspergers. At first this really bothered me, as I was also trying figure out myself what this diagnosis meant, either taking it too seriously, or forgetting that this rather massive piece of lifelong puzzle had now fallen into place, and dealing with the consequences (some bad, some very good). Reaction #2 was surprisingly common and painful, especially from people that I didn't expect it from. I'd feel hurt because it never crossed my mind to 'excuse' myself. Even though I do think it provides a legitimate 'explanation' for past behavior that I felt, and sometimes still feel, deeply ashamed or embarrassed about. A certain amount of self-acceptance and forgiveness, I think, is crucial for many people who are on the spectrum, because they often deal with severe social anxiety to begin with, and the tendency to obsess/ruminate does not go well with guilt and embarrassment over the past. The way I see it now, or try to, is that we're all (people in general) just too inclined to overvalue labels, in particular in the field of mental health, and as a result either reject them entirely, or let them form a wedge between 'the real us' and 'the disability/disorder'. When of course in reality such a distinction is not always very useful outside of the realm of the profession (whether diagnosis or therapy). Normalizing these kinds of labels, without ignoring them entirely of course, strikes me as a very good development. The more we accept that we're all different/weird/'disordered' in various ways, but that some of us suffer more from this difference than others, the better we can actually come to positive outcomes, whether that means changing society, changing or coping through therapy, or the use of medication.
  - gowld 9y ago
    "Autism" is simply a label for a certain basket of personality characteristics that tend to occur together. It's scientifically interesting but not very relevant to daily life -- especially on the milder end where there's less predictive power (in more severe autism, seeing one symptom makes it likely that you'll see other symptoms, so you can correctly plan to encounter them). The label itself doesn't provide more meaning than whatever individual specific characteristics a person exhibits to what extents.
- colordrops 9y ago
  I'm pretty sure I was on the spectrum until my mid 20s. All social interaction was very painful - I couldn't look anyone in the eye, and didn't say anything to anyone. I made weird sounds and movements that others noticed, got lost in daydreams without realizing it, bright light sensitivity, obsessed over meaningless objects and toys, etc. Then I forced myself to travel, take lots of hallucinogens and empathogens, and do projects that involve working directly with multiple people throughout the day. It was a very painful process, but by the time I was 35 I don't think I had many symptoms left. I do think some minor cases are highly treatable if not curable if the sufferer takes matters into their own hands.
  - vldx 9y ago
    Care to expand on the hallucinogens and empathogens? How did they benefit you?
    - colordrops 9y ago
      I believe that at least for me, one of the causes of my symptoms was extreme focus on certain aspects of my reality while being completely blind to other parts. Hallucinogens and empathogens showed me these blind spots, making me a more rounded and open person. It was sometimes extremely pleasant and sometimes so hellish I wished to leave this world. But the hellish experiences were maybe the most effective at getting me to let go of old obsessions and compulsions. I liken it to the difficult coming of age rituals that many tribal cultures subject their teenage boys to to transition them to adulthood.
  - cbhl 9y ago
    One of the weird things about the DSM-IV definition of Asperger's/Autism was that it was defined by certain criteria applying during childhood. The literature that I was given during my diagnosis was very clear that even if all the symptoms disappeared in adulthood, you still "had it". (And of course, the doctors were all trying to give the parents hope, so, "oh, yes, it's very likely your child will have a normal adult life".) (I'm still not 100% sure whether this also applies to the revised DSM-V definition.)
- pluto9 9y ago
  Nothing in your description is specific to Asperger's Syndrome. You sound like an introvert with some social anxiety, which is not a developmental disorder.
  - Will_Parker 9y ago
    That pins down an interesting characteristic of the situation. If we manage to self-treat ourselves into passable normality, few people believe we ever had a serious problem in the first place! Or that they (with their actual serious diagnoses) could learn from those who applied self help and rational analysis to their own lives. I actually think some people get attached to the idea of their victimhood and helplessness, and this can easily become a disincentive to making positive (and very difficult) change. (Yes I know there is the other side of it which is real, that medical expertise can help too. But like everything else, oversimplifying into a clear binary of diagnosable vs not, is not always useful.)
    - mercer 9y ago
      I've read that there are quite a few people who sort of 'grow out' of their aspergers, often when they find a suitable partner. While obviously they might still be neurologically different, as a result the diagnosis might not strictly apply anymore.
    - jerf 9y ago
      "If we manage to self-treat ourselves into passable normality, few people believe we ever had a serious problem in the first place!" Elaborating, I think, rather than disagreeing: Self-treating into passable normalcy is basically life. One of the characteristics you have to have in order to be diagnosed with any psychological disorder is that it has to be interfering with your life. Absolutely everybody can read the DSM and find a good half-a-dozen things they may have tendencies towards, but if it's not interfering with your life, it's not a disease/diagnosis. Liking a clean space does not mean you're on the "OSD spectrum", being a bit nervous around spiders does not mean you're on the "phobia spectrum", etc. "Healthy" isn't a single point in psych space, if for no other reason then that there isn't a "perfectly healthy" person available to define that point for us! It also certainly isn't a well-delineated boundary, but it is clearly not a single point, and even within the space of "healthy" there is clearly a lot of diversity.
- roryrjb 9y ago
  This is the exact feeling I get, for some things I just don't get why most people do that. I realise that for some people it may be hard to cope with or people might be intolerant or ignorant, and not to put those on the spectrum down or anything but I kind of think that everyone is on "the spectrum" with "normal" people just on one far side of it, it's just another part of being human. Someone I know very well is definitely Asperger's based on what I know and I have read, yet he was never diagnosed and would be offended if he had some label attached to them, and whilst he is terrible in social situations, he is completely independent and has always managed to hold down a job. I think in a way a diagnosis is a bad thing, if it then means that person is coddled for want of a better word.
  - mercer 9y ago
    While I think you have a point, I really, really dislike the conclusion, as I've seen and experienced the harm it causes. While I'm sure there are cases where the person diagnosed is coddled (and this is something to keep an eye on), there are many more cases where there's a real problem, and the lack of a diagnosis or the lack of accepting that the (un)diagnosed simply has limitations is a big part of the problem. It's a bit like the attitude that welfare is a bad thing because some people are lazy. I'd argue that, provided we can afford it as a society (and we can), if even one out of ten people is helped, the other nine can scam their way into welfare all they want.
    - roryrjb 9y ago
      Yeah true. I guess it's a wide spectrum, and it depends on what effect the condition has. I guess I mainly said that with regard to more milder symptoms, where that person would be fine but are in a sense held back by the diagnosis.
      - mercer 9y ago
        That I completely agree with. After being diagnosed, for quite a bit of time I could not think of anything else, felt more anxious and weird, and tried even harder to 'hide' my quirks. Over time I realized a lot of those quirks are not so weird, or at least not weirder than those of 'normal' people. In fact, this is one reason why, as I understand it, adult aspies are sometimes warned that they might not want a proper diagnosis, as it can have a severe negative effect (even if just self-worth), and there's not much that can be done to 'solve' the problem.
- bla2 9y ago
  You just enjoy other things than some other people enjoy. That doesn't make you sick or non-normal.
- electricslpnsld 9y ago
  > Even to this day there are a lot of things that "normal" people do that are utterly foreign to me, like going to clubs or watching sports on TV. I wouldn't characterize being into sports as a "normal" thing -- I have friends diagnosed on the spectrum who are utterly obsessed with sports. If you ever want a rabbit hole of statistics and details to dive into, baseball is a cornucopia.
- tytytytytytytyt 9y ago
  Not wanting to go to clubs or watch sports on TV doesn't mean you have Aspergers, nor does enjoying science reading.
- cgmg 9y ago
  > Even to this day there are a lot of things that "normal" people do that are utterly foreign to me, like going to clubs or watching sports on TV. My idea of a good time is reading up on quantum mechanics or the ordinal hierarchy. These are not signs of Asperger’s.
- walshemj 9y ago
  That's interesting I went to a seminar on Neuro Diversity last week and it's estimated that 10-15% of the population is ND (aspergers being one aspect of ND) Its also more common in industries that most of the HN commentators work in as is the film tv and theatre industry
- olavk 9y ago
  Being interested in science does not mean you have Aspergers. Neither does not having certain interests like sports or clubbing. Only a minority go to clubs anyway, so I don't even see why they are the "normal"? (I'm not disputing your self-diagnosis here, just pointing out choice of hobbies have nothing to do with it.)
  - bluetomcat 9y ago
    I have never been formally diagnosed because autism is still not a thing in Eastern Europe, but the following self-assessment leads me to believe I am: 1. Constant fear of losing my belongings like keys, which leads me to check what's in my pocket every minute or two while I'm walking. 2. Overly obsessive about following a particular "ritual" for everyday stuff like washing my car or cleaning the house. Every small spot needs to be covered every time, even if it was previously clean. Otherwise I feel uneasy for completely irrational reasons. 3. Great confusion and anxiety when things in my job or everyday life cannot be done according to my carefully crafted plan.
    - mercer 9y ago
      It's possible you're on the spectrum. I'd say whatever the case, some form of meditation/mindfulness might help with some of those issues. It helped me a lot.
    - itsameta4 9y ago
      Your first two symptoms are literally the textbook definition of Obsessive Compulsive Disorder. https://en.wikipedia.org/wiki/Obsessive%E2%80%93compulsive_disorder https://en.wikipedia.org/wiki/Obsessive%E2%80%93compulsive_d... Number 3 may be as well; I'm not that familiar with OCD.
      - mercer 9y ago
        OCD and ADD are often nice little extras for people on the spectrum, unfortunately.
    - reallymental 9y ago
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- tejasmanohar 9y ago
  I don’t think I associate those hobbies (or lack thereof) with any sort of condition. I’ve seen many people in different boats or take and do not take interest in them.
- alexbanks 9y ago
  This reads just like a person who felt normal social awkwardness in their youth, not a person that actually has some form of Autism.
- maxxxxx 9y ago
  I still remember the feeling of confusion and depression growing up and watching people form relationships, going to parties and doing small talk while I wasn't able to figure out these things that are usually taken for granted. I think my life would have been much better if somebody had recognized this and helped me to function in social life. There are social skills that can be learned with enough practice. It won't be as intuitive as for most "normal" people but it's often possible to function well enough.
  - mercer 9y ago
    Do you feel there's still ways to improve your situation in this regard?
- futurix 9y ago
  My social skills were dreadful until I had some psychotherapy in my teens, but even now they aren't that great. And same as with OP, a lot of things that 'normal' people like are foreign to me - clubbing, watching sports on TV. I'll also add to this list - alcohol, smoking, nearly all TV series / shows. But I never thought I'm 'on a spectrum'. Since heterosexuality is also completely foreign to me - I just assumed I'm a minority in most other areas too ;-) I had to have a long adjustment to the idea that despite being a part of a persecuted minority - there's nothing wrong with me. It's the society that is the problem - not me. Being in a majority is not a proof of a validity of your views - it is just an easier way of living, because you don't have to think about anything. And once you do that mental adjustment once - it is easy to apply elsewhere. I think that watching TV is a waste of time, I'd rather read a book - so what? I'll politely nod when someone is excited about yet another insufferable TV hit series, just as I will politely nod when they are talking about their heterosexual marriage / kids / suburban utopia. I don't have any desire to join in.
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- Slansitartop 9y ago
  > Even to this day there are a lot of things that "normal" people do that are utterly foreign to me, like going to clubs I understand that a lot of people who go clubbing actually don't like it, but they're under the false impression that's what people their age do to have fun and they need to participate to meet people, etc. So normal person == enthusiastic clubber is false. > watching sports on TV I personally don't watch sports, but I think the people who enjoy watching them tend to have grown up with them and have a much greater knowledge and appreciation for the game than those who don't. If you don't understand what's going on, a random televised game is very much like watching mediocre language sitcom in a language you don't understand. Not knowing the language of the show doesn't make you less "normal."
  - lisper 9y ago
    I'm so ridiculously far from "enthusiastic clubber" it's not even funny. I don't even know how to go through the motions. All of the social interaction skills I've learned in the past N years all require that I be able to talk to the person I'm interacting with and hear what they say. That's not possible in a club, at least not for me (one of the problems I have is being able to follow a conversation in the face of any background noise, so in a club it's completely hopeless). I am (or was, back when I tried it) completely rudderless in a club. With respect to sports, I actually do enjoy watching the odd sporting event now and again. What is actually foreign to me is caring about who wins.
- corey_moncure 9y ago
  >when I was a kid, I was completely oblivious to the fact that my peers were agents in their own right, with thoughts and preferences and hopes and dreams that might be different from my own. That, I am now given to understand, is the hallmark of autism spectrum disorders. I don't have any diagnosis of autism, so it might just simply be that I was a huge jerk for the first 20 or so years of my life. It may have been the consequence of developing academic skills several years ahead of other children my age (this too is a circumstance that must inevitably affect the developing mind). My experiences studying and traveling internationally as an adult were invaluable, forcing me to perceive and then confront this shortcoming in my own personality. When I discovered that many things I assumed were invariant bedrock assertions in fact vary greatly among other people, it was like I had to recreate my concept of others and self from the ground up to reconcile what I'd seen with my life experience to that point. I think I still approach social interactions analytically (coping) rather than intuitively but at least I've learned not to be so much of a jerk to others, or at the very least to be conscious of it and apologize when I am.
isolli 9y ago
My wife and I believe our daughter has a (thankfully) mild form of autism. It took us a while, but when the realization came, it was a relief, as we stopped being angry at her and at ourselves: 1) hopefully we did not do anything wrong to cause this, and 2) it is not our daughter's fault that she behaves this way. We did not get a specific diagnostic, and I'm not sure it's worth seeking one. As far as I know, the diagnostic is not scientific, so I wouldn't consider it a strong validation of what we're experiencing. However, a diagnostic might make it easier to explain to our family and friends what is going on, and talk about it. Any thoughts?
- Chriky 9y ago
  I mean, IANAD but I would definitely get a professional diagnosis before acting on the assumption my child has a specific medical condition...?
  - lainga 9y ago
    It sounds like the parent is talking about validation, not specific psychiatric action. I think it should be OK as long as they don't present their child as professionally diagnosed as such.
    - isolli 9y ago
      Thanks. We're only acting on it insofar as we read about it and try to find practical ways to deal with it. We're not going to medicate her! And when we discuss the topic, we always start with: "We believe that..."
      - BadCookie 9y ago
        It's not standard to medicate for autism, FYI. The standard recommendation is therapy (Applied Behavioral Analysis, occupational therapy, and speech therapy are most common). One benefit of a diagnosis is that often your insurance company will cover more therapy. The right next step is to get an actual diagnosis, in my opinion. You might be off-base in your suspicions, or it may turn out that your child is more affected than you suspect.
gaspoweredcat 9y ago
Although im male i also had a late diagnosis (33) which brought about several "oh now that makes sense" moments. im not really surprised i wasnt diagnosed, i grew up in a tiny middle of nowhere village in the 80s, autism was pretty much unheard of i was just the "problem kid" of the village. ive also always had various quirks that id always previously just put down to me being "weird" the most pronounced of these is that i am a vegetarian, however not by choice, i just cant see meat as edible, i can and have killed/cleaned/cooked things before so that doesnt bother me, i wish i could change it but i simply cant. its not all bad though, yes i lack empathy and im socially awkward to say the least but i also have an excellent memory and a solid affinity for electronics and IT, i didnt need to be taught, ive always just sort of known. so while a diagnosis didnt change anything about my life it did answer some questions about why i am who i am
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cookiecaper 9y ago
Autism, like cancer, is not a single thing. Toward the start of the spectrum, including Asperger's, it seems to be essentially "clinically-significant weirdness, not otherwise specified" (on the later end of the spectrum, it's "major or profound mental retardation, not otherwise specified"). A more productive discussion might be why we feel the need to pathologize so much about ourselves. Why do we need a person to look us over and say "Ah, none of what you are is your fault" to feel OK? Worse, why do some parents need to hear that about their children? I've known kids who've been paraded to several "mental health professionals" until one would finally give the parents what they ultimately wanted, a diagnosis-as-scapegoat. In the 90s that scapegoat was ADHD. Today it's Asperger's.
- mercer 9y ago
  Well, if it significantly impacts functioning, whether social or otherwise, it's pretty helpful to label it and find ways of solving the problems or coping with them (using said label to refer to the particular issues). That said, I do agree that at least in the 'public mind' there's too much focus on these weird things being a problem. In fact, I've found that with those who struggle with mental health issues of many kinds, the pathologizing is a significant part of the problem. There's a strong pressure, both external and internal, to conform. Very often that's part of the problem, or the cause of many of the symptoms, and it strikes me as frustratingly pointless.
- gowld 9y ago
  Mental Retardation is not autism, though it is often correlated. http://journals.sagepub.com/doi/abs/10.1177/10883576060210020301 http://journals.sagepub.com/doi/abs/10.1177/1088357606021002... > "Overall, the findings indicate that more empirical evidence is needed before conclusions can be made about the percentages of children With autism Who are mentally retarded." Diagnosis isn't a scapegoat, it's a doorway to effective engagements and improved quality of life.
  - thismyusername 9y ago
    I think you're missing his point. What good is a diagnosis if its not accurate?
blauditore 9y ago
Since the causes of autism are not really understood, it's defined and diagnosed based on behavior, or symptoms, if you will. Thus, is there an actual qualitative difference between "shy, socially anxious/clumsy" and autistic, except for the extent of those properties?
- mercer 9y ago
  Good question. A big difference between the former and the latter is that the former is mostly a social matter, while the latter can have a pronounced effect even on the isolated, personal aspects of a person (in particular, obsessiveness in interests, but a whole bunch of other things too).
- loriverkutya 9y ago
  Yes there is for example: "Hyper‐or hypo‐reactivity to sensory input or unusual interest in sensory aspects of environment" If you want to know more, read the DSM-5 diagnostic criteria about ASD: https://depts.washington.edu/dbpeds/Screening%20Tools/DSM-5%28ASD.Guidelines%29Feb2013.pdf https://depts.washington.edu/dbpeds/Screening%20Tools/DSM-5%...
- gowld 9y ago
  It's very easy to diagnose someone with extreme autism, just as it's easy to diagnose someone with extreme dwarfism. It's blurrier when you get to mild autism (and mild shortness) where there is less visible impairment, less obvious behavior, and often visible benefits.
  - TomK32 9y ago
    I'm 1.93 and my knees make trouble. can you give me a diagnosis? :D I'm reading a book at the moment, in german, "Ich liebe einen Asperger" and even proper autism was barely recognized by people working with kids 15yrs ago: "... but it couldn't be Autism!?" is one quote from an educator about the family's most autistic child. Things probably haven't changed that much. One other thing, even though it is exhausting, kids on the spectrum try to mimic others, act normal etc just to get a good feedback. In the book it took months until the psychologist got through the kid's defenses and was certain about the diagnosis. It's sad really, so much frustration the family describe that could have been prevented.
amyjess 9y ago
I have a lingering suspicion that a good amount of monks during the middle ages had some form of ASD. Monastic life involved repetitive activities that are usually enjoyed by people with ASD, and monks often had intellectual hobbies that made them probably the closest thing to nerds that existed in the middle ages, which is linked to ASD.
dkarl 9y ago
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.
- tzar 9y ago
  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.
TomK32 9y ago
Haven't got a diagnosis myself but I tick a lot of boxes for mild autism and a few articles I read about it 5 years ago (31 at that time) made me realize it's a pretty good explanation for me. I'm not surprised that women are diagnosed less, they are integrated into the social web of family and friends a lot better and from early on. I'm pretty sure I didn't have even a 10th of the social interactions my little daughter has. If only I could remember more than 10 things from my childhood. On quote from the article that I find heartbreaking is this one: > I’ve watched people carefully and studied psychology to degree level to get me to the point where I can now act quite naturally. Acting to appear normal, I can do this for a few hours (assuming they serve a social lubricant ;), but put me in a room with small kids, parents and bad acoustic and I need to get out after an hour. My wife's not helping in such situations, actually is embarrassed by my reserved behaviour and inability to connect. She knows that I think I'm an aspie but held it against me so often, that I wish I hadn't told her. She even complains about me not looking in her eyes when she talks, despite know that I'm not wired to do that. On the other hand, no one before pointed that out to me. What's the point of a diagnosis at 36 when all I'd do with it is show it people who wouldn't believe me otherwise?
- dandersh 9y ago
  I'm really sorry for you to have to go through this. Struggling with social interactions and the fallout is not easy, and it does not sound like you have the support you need. Have you tried talking to your wife and explaining that social situations are like other life experiences where some people enjoy/excel at them while others do not? Not everyone enjoys video games, sports, reading, etc. Not everyone is a social butterfly, and those who are not shouldn't have to feel embarrassed because of it.
- cryptonector 9y ago
  If you're a high-functioning adult, a diagnosis won't do much good -- you've already figured out what you needed to at least unconsciously. But suppose now that you have children. And one of your children is on the spectrum. If you know what to look for, you might save them and yourself a ton of stress.
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drefanzor 9y ago
I understand they have a disorder, and yeah, it's "not that bad", for SOME. But come on. My son has autism. He is 13, and still cannot speak. He has to have 24 hour care. I understand that autism is a spectrum, but realize that what they're talking about here is much different. It's like saying someone has a paralyzed pinky versus a being a quadriplegic.
- TomK32 9y ago
  Well, what's better: to have loved and lost it or never have loved at all? Can we answer this for him? Does your son know what the world around him is and what a neuro-typical person is like in that world? Us mild cases still need 20 or 30 years to realize what's wrong, that normal people do things differently than we though. When you try to fit in but know you might never do 100%, why bother keep trying? His disability is visible, the expectations lowered; but in darker time 70yrs ago his condition would have been his death sentence. I feel happy that times have changed and society and parents do care. Thank you.
- cryptonector 9y ago
  I've only known people on the extremes of the spectrum. I don't know anyone who is clearly "in the middle". I do wonder if it is a spectrum or just two different spectra, because I agree that the extremes are not really comparable. My heart goes out to you. I hope your son catches up eventually.
- mercer 9y ago
  What's your point?
jeandejean 9y ago
"Five times as many males as females are diagnosed", but the problem is of course that women are not diagnosed enough... What about there is a big problem in our society that make males more prone to autism that we should fix first? That article seems to be political rather than informative to me.
- fhayde 9y ago
  I'm inclined to agree. Perhaps I'm just getting old and cynical but it seems like a lot of people consider it a badge of honor to be diagnosed with some sort of neuro/psycho disability. Granted, that's not a terrible thing per se, because if nothing else, it means there's a significant shift away from the stigmatizing perception of the past. I just have a hard time accepting the celebratory nature of things like this. Similar to the body positivity movement, which itself is a healthy shift towards acceptance and responsibility, there's always a fringe element who seem to romanticize and glorify something. I personally believe it's because many people want to feel included in "something", and that's fine, I don't have a problem with that. I just get grumpy when the initial context goes from understanding the way a disorder can impact your life and raising awareness to "let's make an exclusive group to carve out a little island only me and other special people like me can hang out on". It feels a lot like the reason and purpose are hijacked and unfortunately the message gets lost and tainted, creating more of a backlash than anything else. I don't have a problem with exclusionary groups at all either; my issue is when they use the growing awareness of something else to piggyback off of. I dunno, that's my $0.02 that no one asked for lol.
- cryptonector 9y ago
  It's mostly anecdotal. That's not devoid of value even if not very informative (because anecdotal). It could also be political and still be of value.
- 205guy 9y ago
  I think the point of articles like this one is to raise the question of whether autism as it is currently diagnosed in young children is actually only diagnosing "male-pattern autism." By looking at adult female cases, where the subject is able to reflect on their childhood and their late diagnosis, we might be able to formulate better screening for children so that the ratio isn't as skewed.
justgottasay3 9y ago
I think this is an interesting intersection with the recent episode of Full Frontal... in which the host points out that women appear to be under-served by Medicine. Are we failing half the population so completely?
anotherevan 9y ago
Both my kids are aspie. My son was diagnosed when he was seven because of some speech delay when he was younger and social awkwardness. My daughter was diagnosed at sixteen after two years of missed school and barely leaving the house due to incredibly high anxiety. Oh, and the first time she was assessed eighteen months prior she was only "borderline" aspie even though in retrospect she has been effected much more profoundly. (She also had a similar speech delay when she was younger too, btw.) We need to get a lot better at recognising the condition in girls, as we have with boys. § If you are wanting to know more about autism in all its flavours, google for just about anything by Tony Attwood. In more recent years he has been concentrating more on autism in women, so adding "women" to your search terms will surface specific material in that regard.
morgtheborg 9y ago
I wonder sometimes if I had Aspergers and just effectively trained myself out of it. All I did was read when I was a kid. At recess, at home, etc. I just read. I didn't really understand social interactions and when I left my family and went to boarding school for high school it became apparent I was extremely socially behind. Sitting in conversations trying to figure out a) what the heck people say, how do they even come up with something to say on inane topics? and b) when am I allowed to say the one thing I managed to find relevant? was excruciating during my early years. Being too literal, to this day, is a problem. Struggling with social norms around "honesty", another daily issue. The idea that lying is A-Okay (particularly in business) and that there are some thoughts/ideas I'm not supposed to share due to social norms hasn't come easy. I'm lucky I've opted into a career where it's assumed I'll be a little weird (software engineer), so it's given a pass when I'm too honest, literal, etc. For me, the big turning point was when I joined acting class my Sophomore year of HS. I basically just thought, "Oh, this is convenient! I'll just ACT like someone who is <x> and it'll all work out!" And, yea, for the most part that's been true. The difficulty of quickly sliding in between "me" and a "social mask" at work hasn't been fun, but overall I feel like the "mask" has become me a solid 40% of any given day to great positive effect. I still find a social situation to be a lot of work. If I allow myself to drink or do anything that fuzzes my brain at all so I stop DOING all that work of analyzing the room and figuring out how I'm allowed to engage appropriately while still being as much "me" as I can, well, then I spend probably the next 24 hours in a shame-cycle about how poorly I must've come off because I KNOW if I don't do that work then I'm dropping the ball in a million tiny ways. Early in my relationship with my SO anytime I had caffeine we fought...because I just stopped reading him and went off on my own happy little zig-zagging butterfly path. If he didn't explicitly say he was unhappy, I was not going to pick it up. It'd be nice to just be able to point to a diagnosis rather than have to blame myself for fucking up another social scene by letting my attention wander or drinking or whathaveyou. But, you know, I could just be a normal introvert who has to work at being social in an extroverted world... I sort of assume it's the latter.

206 points by pbhowmic 9y ago

Aspergers was not a thing when I was growing up in the 70s so I was never formally diagnosed, but I'm pretty sure I'm on the spectrum, and the result was a pretty painful childhood. I managed to drag myself out of it and give myself an education in social skills, and nowadays you'd never guess that I'm Aspie (my wife still doesn't believe me, but I think she's an undiagnosed Aspie herself). Even to this day there are a lot of things that "normal" people do that are utterly foreign to me, like going to clubs or watching sports on TV. My idea of a good time is reading up on quantum mechanics or the ordinal hierarchy. I think mild Aspergers is a lot more common than most people think even today because it is possible to hide it completely, and there's a lot of societal pressure to do just that. [UPDATE] A lot of reply comments are of the form: what you have described here is not Aspergers, it's just normal growing up. Well, yeah, it's not so easy to give a complete description of my situation in an HN comment, and I'm not sure I'd be willing to do it even if I could. I'm not particularly proud of the person I used to be. But I will tell you this: in retrospect, when I was a kid, I was completely oblivious to the fact that my peers were agents in their own right, with thoughts and preferences and hopes and dreams that might be different from my own. That, I am now given to understand, is the hallmark of autism spectrum disorders. But I don't think it matters whether or not I "actually" had/have Aspergers. What matters is that because I was clueless, I behaved obnoxiously (not realizing that I was doing so) and as a result of that I had very few friends. It was intensely painful, and it took many years of concerted effort to change my situation, but I ultimately managed to do it. That is really what I want to convey: whether or not it was abnormal, it hurt, but I was able to make it better. And if I could do it, so can you, regardless of what label we choose to attach to our conditions.

brabel 9y ago
> My idea of a good time is reading up on quantum mechanics or the ordinal hierarchy. Haha, same here!! Does it mean I might be an "Aspie" too???
- bluetomcat 9y ago
  Deep interest about any topic which is considered "uninteresting" or "impractical" by "normal" people. Might be the history of a particular aircraft, or a car, or an event in the distant past. Your brain is consumed by it for completely irrational reasons and you feel obliged to dig even deeper.
  - mercer 9y ago
    One thing that I'd say makes it more specifically an 'aspie' thing is that it's often obsessive to the unhealthy point of severely neglecting other aspects of life, and it can be weirdly temporary. Something like being into sudoku's for weeks on end, and then entirely forgetting about it afterwards.
- lisper 9y ago
  An interest in geeky things in and of itself is not diagnostic of Aspergers. What matters more is if you have trouble with interpersonal relationships, which I definitely did growing up. Things are much better nowadays, but it took a lot of hard work to get from A to B.
mercer 9y ago
I was only diagnosed at around 30, and so I also just kind of figured out how to 'pass for normal'. One of my biggest frustrations when I talk about this stuff is that people will 1) insist I'm not autistic, as a compliment of sorts, 2) insist I'm not autistic as a sort of attack/defense, lest I 'use' it to victimize myself, or 3) start treating me like a 'broken' person and assigning all 'oddness' to aspergers. At first this really bothered me, as I was also trying figure out myself what this diagnosis meant, either taking it too seriously, or forgetting that this rather massive piece of lifelong puzzle had now fallen into place, and dealing with the consequences (some bad, some very good). Reaction #2 was surprisingly common and painful, especially from people that I didn't expect it from. I'd feel hurt because it never crossed my mind to 'excuse' myself. Even though I do think it provides a legitimate 'explanation' for past behavior that I felt, and sometimes still feel, deeply ashamed or embarrassed about. A certain amount of self-acceptance and forgiveness, I think, is crucial for many people who are on the spectrum, because they often deal with severe social anxiety to begin with, and the tendency to obsess/ruminate does not go well with guilt and embarrassment over the past. The way I see it now, or try to, is that we're all (people in general) just too inclined to overvalue labels, in particular in the field of mental health, and as a result either reject them entirely, or let them form a wedge between 'the real us' and 'the disability/disorder'. When of course in reality such a distinction is not always very useful outside of the realm of the profession (whether diagnosis or therapy). Normalizing these kinds of labels, without ignoring them entirely of course, strikes me as a very good development. The more we accept that we're all different/weird/'disordered' in various ways, but that some of us suffer more from this difference than others, the better we can actually come to positive outcomes, whether that means changing society, changing or coping through therapy, or the use of medication.
- gowld 9y ago
  "Autism" is simply a label for a certain basket of personality characteristics that tend to occur together. It's scientifically interesting but not very relevant to daily life -- especially on the milder end where there's less predictive power (in more severe autism, seeing one symptom makes it likely that you'll see other symptoms, so you can correctly plan to encounter them). The label itself doesn't provide more meaning than whatever individual specific characteristics a person exhibits to what extents.
colordrops 9y ago
I'm pretty sure I was on the spectrum until my mid 20s. All social interaction was very painful - I couldn't look anyone in the eye, and didn't say anything to anyone. I made weird sounds and movements that others noticed, got lost in daydreams without realizing it, bright light sensitivity, obsessed over meaningless objects and toys, etc. Then I forced myself to travel, take lots of hallucinogens and empathogens, and do projects that involve working directly with multiple people throughout the day. It was a very painful process, but by the time I was 35 I don't think I had many symptoms left. I do think some minor cases are highly treatable if not curable if the sufferer takes matters into their own hands.
- vldx 9y ago
  Care to expand on the hallucinogens and empathogens? How did they benefit you?
  - colordrops 9y ago
    I believe that at least for me, one of the causes of my symptoms was extreme focus on certain aspects of my reality while being completely blind to other parts. Hallucinogens and empathogens showed me these blind spots, making me a more rounded and open person. It was sometimes extremely pleasant and sometimes so hellish I wished to leave this world. But the hellish experiences were maybe the most effective at getting me to let go of old obsessions and compulsions. I liken it to the difficult coming of age rituals that many tribal cultures subject their teenage boys to to transition them to adulthood.
- cbhl 9y ago
  One of the weird things about the DSM-IV definition of Asperger's/Autism was that it was defined by certain criteria applying during childhood. The literature that I was given during my diagnosis was very clear that even if all the symptoms disappeared in adulthood, you still "had it". (And of course, the doctors were all trying to give the parents hope, so, "oh, yes, it's very likely your child will have a normal adult life".) (I'm still not 100% sure whether this also applies to the revised DSM-V definition.)
pluto9 9y ago
Nothing in your description is specific to Asperger's Syndrome. You sound like an introvert with some social anxiety, which is not a developmental disorder.
- Will_Parker 9y ago
  That pins down an interesting characteristic of the situation. If we manage to self-treat ourselves into passable normality, few people believe we ever had a serious problem in the first place! Or that they (with their actual serious diagnoses) could learn from those who applied self help and rational analysis to their own lives. I actually think some people get attached to the idea of their victimhood and helplessness, and this can easily become a disincentive to making positive (and very difficult) change. (Yes I know there is the other side of it which is real, that medical expertise can help too. But like everything else, oversimplifying into a clear binary of diagnosable vs not, is not always useful.)
  - mercer 9y ago
    I've read that there are quite a few people who sort of 'grow out' of their aspergers, often when they find a suitable partner. While obviously they might still be neurologically different, as a result the diagnosis might not strictly apply anymore.
  - jerf 9y ago
    "If we manage to self-treat ourselves into passable normality, few people believe we ever had a serious problem in the first place!" Elaborating, I think, rather than disagreeing: Self-treating into passable normalcy is basically life. One of the characteristics you have to have in order to be diagnosed with any psychological disorder is that it has to be interfering with your life. Absolutely everybody can read the DSM and find a good half-a-dozen things they may have tendencies towards, but if it's not interfering with your life, it's not a disease/diagnosis. Liking a clean space does not mean you're on the "OSD spectrum", being a bit nervous around spiders does not mean you're on the "phobia spectrum", etc. "Healthy" isn't a single point in psych space, if for no other reason then that there isn't a "perfectly healthy" person available to define that point for us! It also certainly isn't a well-delineated boundary, but it is clearly not a single point, and even within the space of "healthy" there is clearly a lot of diversity.
roryrjb 9y ago
This is the exact feeling I get, for some things I just don't get why most people do that. I realise that for some people it may be hard to cope with or people might be intolerant or ignorant, and not to put those on the spectrum down or anything but I kind of think that everyone is on "the spectrum" with "normal" people just on one far side of it, it's just another part of being human. Someone I know very well is definitely Asperger's based on what I know and I have read, yet he was never diagnosed and would be offended if he had some label attached to them, and whilst he is terrible in social situations, he is completely independent and has always managed to hold down a job. I think in a way a diagnosis is a bad thing, if it then means that person is coddled for want of a better word.
- mercer 9y ago
  While I think you have a point, I really, really dislike the conclusion, as I've seen and experienced the harm it causes. While I'm sure there are cases where the person diagnosed is coddled (and this is something to keep an eye on), there are many more cases where there's a real problem, and the lack of a diagnosis or the lack of accepting that the (un)diagnosed simply has limitations is a big part of the problem. It's a bit like the attitude that welfare is a bad thing because some people are lazy. I'd argue that, provided we can afford it as a society (and we can), if even one out of ten people is helped, the other nine can scam their way into welfare all they want.
  - roryrjb 9y ago
    Yeah true. I guess it's a wide spectrum, and it depends on what effect the condition has. I guess I mainly said that with regard to more milder symptoms, where that person would be fine but are in a sense held back by the diagnosis.
    - mercer 9y ago
      That I completely agree with. After being diagnosed, for quite a bit of time I could not think of anything else, felt more anxious and weird, and tried even harder to 'hide' my quirks. Over time I realized a lot of those quirks are not so weird, or at least not weirder than those of 'normal' people. In fact, this is one reason why, as I understand it, adult aspies are sometimes warned that they might not want a proper diagnosis, as it can have a severe negative effect (even if just self-worth), and there's not much that can be done to 'solve' the problem.
bla2 9y ago
You just enjoy other things than some other people enjoy. That doesn't make you sick or non-normal.
electricslpnsld 9y ago
> Even to this day there are a lot of things that "normal" people do that are utterly foreign to me, like going to clubs or watching sports on TV. I wouldn't characterize being into sports as a "normal" thing -- I have friends diagnosed on the spectrum who are utterly obsessed with sports. If you ever want a rabbit hole of statistics and details to dive into, baseball is a cornucopia.
tytytytytytytyt 9y ago
Not wanting to go to clubs or watch sports on TV doesn't mean you have Aspergers, nor does enjoying science reading.
cgmg 9y ago
> Even to this day there are a lot of things that "normal" people do that are utterly foreign to me, like going to clubs or watching sports on TV. My idea of a good time is reading up on quantum mechanics or the ordinal hierarchy. These are not signs of Asperger’s.
walshemj 9y ago
That's interesting I went to a seminar on Neuro Diversity last week and it's estimated that 10-15% of the population is ND (aspergers being one aspect of ND) Its also more common in industries that most of the HN commentators work in as is the film tv and theatre industry
olavk 9y ago
Being interested in science does not mean you have Aspergers. Neither does not having certain interests like sports or clubbing. Only a minority go to clubs anyway, so I don't even see why they are the "normal"? (I'm not disputing your self-diagnosis here, just pointing out choice of hobbies have nothing to do with it.)
- bluetomcat 9y ago
  I have never been formally diagnosed because autism is still not a thing in Eastern Europe, but the following self-assessment leads me to believe I am: 1. Constant fear of losing my belongings like keys, which leads me to check what's in my pocket every minute or two while I'm walking. 2. Overly obsessive about following a particular "ritual" for everyday stuff like washing my car or cleaning the house. Every small spot needs to be covered every time, even if it was previously clean. Otherwise I feel uneasy for completely irrational reasons. 3. Great confusion and anxiety when things in my job or everyday life cannot be done according to my carefully crafted plan.
  - mercer 9y ago
    It's possible you're on the spectrum. I'd say whatever the case, some form of meditation/mindfulness might help with some of those issues. It helped me a lot.
  - itsameta4 9y ago
    Your first two symptoms are literally the textbook definition of Obsessive Compulsive Disorder. https://en.wikipedia.org/wiki/Obsessive%E2%80%93compulsive_disorder https://en.wikipedia.org/wiki/Obsessive%E2%80%93compulsive_d... Number 3 may be as well; I'm not that familiar with OCD.
    - mercer 9y ago
      OCD and ADD are often nice little extras for people on the spectrum, unfortunately.
  - reallymental 9y ago
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tejasmanohar 9y ago
I don’t think I associate those hobbies (or lack thereof) with any sort of condition. I’ve seen many people in different boats or take and do not take interest in them.
alexbanks 9y ago
This reads just like a person who felt normal social awkwardness in their youth, not a person that actually has some form of Autism.
maxxxxx 9y ago
I still remember the feeling of confusion and depression growing up and watching people form relationships, going to parties and doing small talk while I wasn't able to figure out these things that are usually taken for granted. I think my life would have been much better if somebody had recognized this and helped me to function in social life. There are social skills that can be learned with enough practice. It won't be as intuitive as for most "normal" people but it's often possible to function well enough.
- mercer 9y ago
  Do you feel there's still ways to improve your situation in this regard?
futurix 9y ago
My social skills were dreadful until I had some psychotherapy in my teens, but even now they aren't that great. And same as with OP, a lot of things that 'normal' people like are foreign to me - clubbing, watching sports on TV. I'll also add to this list - alcohol, smoking, nearly all TV series / shows. But I never thought I'm 'on a spectrum'. Since heterosexuality is also completely foreign to me - I just assumed I'm a minority in most other areas too ;-) I had to have a long adjustment to the idea that despite being a part of a persecuted minority - there's nothing wrong with me. It's the society that is the problem - not me. Being in a majority is not a proof of a validity of your views - it is just an easier way of living, because you don't have to think about anything. And once you do that mental adjustment once - it is easy to apply elsewhere. I think that watching TV is a waste of time, I'd rather read a book - so what? I'll politely nod when someone is excited about yet another insufferable TV hit series, just as I will politely nod when they are talking about their heterosexual marriage / kids / suburban utopia. I don't have any desire to join in.
- deleted 9y ago
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Slansitartop 9y ago
> Even to this day there are a lot of things that "normal" people do that are utterly foreign to me, like going to clubs I understand that a lot of people who go clubbing actually don't like it, but they're under the false impression that's what people their age do to have fun and they need to participate to meet people, etc. So normal person == enthusiastic clubber is false. > watching sports on TV I personally don't watch sports, but I think the people who enjoy watching them tend to have grown up with them and have a much greater knowledge and appreciation for the game than those who don't. If you don't understand what's going on, a random televised game is very much like watching mediocre language sitcom in a language you don't understand. Not knowing the language of the show doesn't make you less "normal."
- lisper 9y ago
  I'm so ridiculously far from "enthusiastic clubber" it's not even funny. I don't even know how to go through the motions. All of the social interaction skills I've learned in the past N years all require that I be able to talk to the person I'm interacting with and hear what they say. That's not possible in a club, at least not for me (one of the problems I have is being able to follow a conversation in the face of any background noise, so in a club it's completely hopeless). I am (or was, back when I tried it) completely rudderless in a club. With respect to sports, I actually do enjoy watching the odd sporting event now and again. What is actually foreign to me is caring about who wins.
corey_moncure 9y ago
>when I was a kid, I was completely oblivious to the fact that my peers were agents in their own right, with thoughts and preferences and hopes and dreams that might be different from my own. That, I am now given to understand, is the hallmark of autism spectrum disorders. I don't have any diagnosis of autism, so it might just simply be that I was a huge jerk for the first 20 or so years of my life. It may have been the consequence of developing academic skills several years ahead of other children my age (this too is a circumstance that must inevitably affect the developing mind). My experiences studying and traveling internationally as an adult were invaluable, forcing me to perceive and then confront this shortcoming in my own personality. When I discovered that many things I assumed were invariant bedrock assertions in fact vary greatly among other people, it was like I had to recreate my concept of others and self from the ground up to reconcile what I'd seen with my life experience to that point. I think I still approach social interactions analytically (coping) rather than intuitively but at least I've learned not to be so much of a jerk to others, or at the very least to be conscious of it and apologize when I am.

isolli 9y ago

My wife and I believe our daughter has a (thankfully) mild form of autism. It took us a while, but when the realization came, it was a relief, as we stopped being angry at her and at ourselves: 1) hopefully we did not do anything wrong to cause this, and 2) it is not our daughter's fault that she behaves this way. We did not get a specific diagnostic, and I'm not sure it's worth seeking one. As far as I know, the diagnostic is not scientific, so I wouldn't consider it a strong validation of what we're experiencing. However, a diagnostic might make it easier to explain to our family and friends what is going on, and talk about it. Any thoughts?

Chriky 9y ago
I mean, IANAD but I would definitely get a professional diagnosis before acting on the assumption my child has a specific medical condition...?
- lainga 9y ago
  It sounds like the parent is talking about validation, not specific psychiatric action. I think it should be OK as long as they don't present their child as professionally diagnosed as such.
  - isolli 9y ago
    Thanks. We're only acting on it insofar as we read about it and try to find practical ways to deal with it. We're not going to medicate her! And when we discuss the topic, we always start with: "We believe that..."
    - BadCookie 9y ago
      It's not standard to medicate for autism, FYI. The standard recommendation is therapy (Applied Behavioral Analysis, occupational therapy, and speech therapy are most common). One benefit of a diagnosis is that often your insurance company will cover more therapy. The right next step is to get an actual diagnosis, in my opinion. You might be off-base in your suspicions, or it may turn out that your child is more affected than you suspect.

gaspoweredcat 9y ago

Although im male i also had a late diagnosis (33) which brought about several "oh now that makes sense" moments. im not really surprised i wasnt diagnosed, i grew up in a tiny middle of nowhere village in the 80s, autism was pretty much unheard of i was just the "problem kid" of the village. ive also always had various quirks that id always previously just put down to me being "weird" the most pronounced of these is that i am a vegetarian, however not by choice, i just cant see meat as edible, i can and have killed/cleaned/cooked things before so that doesnt bother me, i wish i could change it but i simply cant. its not all bad though, yes i lack empathy and im socially awkward to say the least but i also have an excellent memory and a solid affinity for electronics and IT, i didnt need to be taught, ive always just sort of known. so while a diagnosis didnt change anything about my life it did answer some questions about why i am who i am

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cookiecaper 9y ago

Autism, like cancer, is not a single thing. Toward the start of the spectrum, including Asperger's, it seems to be essentially "clinically-significant weirdness, not otherwise specified" (on the later end of the spectrum, it's "major or profound mental retardation, not otherwise specified"). A more productive discussion might be why we feel the need to pathologize so much about ourselves. Why do we need a person to look us over and say "Ah, none of what you are is your fault" to feel OK? Worse, why do some parents need to hear that about their children? I've known kids who've been paraded to several "mental health professionals" until one would finally give the parents what they ultimately wanted, a diagnosis-as-scapegoat. In the 90s that scapegoat was ADHD. Today it's Asperger's.

mercer 9y ago
Well, if it significantly impacts functioning, whether social or otherwise, it's pretty helpful to label it and find ways of solving the problems or coping with them (using said label to refer to the particular issues). That said, I do agree that at least in the 'public mind' there's too much focus on these weird things being a problem. In fact, I've found that with those who struggle with mental health issues of many kinds, the pathologizing is a significant part of the problem. There's a strong pressure, both external and internal, to conform. Very often that's part of the problem, or the cause of many of the symptoms, and it strikes me as frustratingly pointless.
gowld 9y ago
Mental Retardation is not autism, though it is often correlated. http://journals.sagepub.com/doi/abs/10.1177/10883576060210020301 http://journals.sagepub.com/doi/abs/10.1177/1088357606021002... > "Overall, the findings indicate that more empirical evidence is needed before conclusions can be made about the percentages of children With autism Who are mentally retarded." Diagnosis isn't a scapegoat, it's a doorway to effective engagements and improved quality of life.
- thismyusername 9y ago
  I think you're missing his point. What good is a diagnosis if its not accurate?

blauditore 9y ago

Since the causes of autism are not really understood, it's defined and diagnosed based on behavior, or symptoms, if you will. Thus, is there an actual qualitative difference between "shy, socially anxious/clumsy" and autistic, except for the extent of those properties?

mercer 9y ago
Good question. A big difference between the former and the latter is that the former is mostly a social matter, while the latter can have a pronounced effect even on the isolated, personal aspects of a person (in particular, obsessiveness in interests, but a whole bunch of other things too).
loriverkutya 9y ago
Yes there is for example: "Hyper‐or hypo‐reactivity to sensory input or unusual interest in sensory aspects of environment" If you want to know more, read the DSM-5 diagnostic criteria about ASD: https://depts.washington.edu/dbpeds/Screening%20Tools/DSM-5%28ASD.Guidelines%29Feb2013.pdf https://depts.washington.edu/dbpeds/Screening%20Tools/DSM-5%...
gowld 9y ago
It's very easy to diagnose someone with extreme autism, just as it's easy to diagnose someone with extreme dwarfism. It's blurrier when you get to mild autism (and mild shortness) where there is less visible impairment, less obvious behavior, and often visible benefits.
- TomK32 9y ago
  I'm 1.93 and my knees make trouble. can you give me a diagnosis? :D I'm reading a book at the moment, in german, "Ich liebe einen Asperger" and even proper autism was barely recognized by people working with kids 15yrs ago: "... but it couldn't be Autism!?" is one quote from an educator about the family's most autistic child. Things probably haven't changed that much. One other thing, even though it is exhausting, kids on the spectrum try to mimic others, act normal etc just to get a good feedback. In the book it took months until the psychologist got through the kid's defenses and was certain about the diagnosis. It's sad really, so much frustration the family describe that could have been prevented.

amyjess 9y ago

I have a lingering suspicion that a good amount of monks during the middle ages had some form of ASD. Monastic life involved repetitive activities that are usually enjoyed by people with ASD, and monks often had intellectual hobbies that made them probably the closest thing to nerds that existed in the middle ages, which is linked to ASD.

dkarl 9y ago

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.

tzar 9y ago
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.

TomK32 9y ago

Haven't got a diagnosis myself but I tick a lot of boxes for mild autism and a few articles I read about it 5 years ago (31 at that time) made me realize it's a pretty good explanation for me. I'm not surprised that women are diagnosed less, they are integrated into the social web of family and friends a lot better and from early on. I'm pretty sure I didn't have even a 10th of the social interactions my little daughter has. If only I could remember more than 10 things from my childhood. On quote from the article that I find heartbreaking is this one: > I’ve watched people carefully and studied psychology to degree level to get me to the point where I can now act quite naturally. Acting to appear normal, I can do this for a few hours (assuming they serve a social lubricant ;), but put me in a room with small kids, parents and bad acoustic and I need to get out after an hour. My wife's not helping in such situations, actually is embarrassed by my reserved behaviour and inability to connect. She knows that I think I'm an aspie but held it against me so often, that I wish I hadn't told her. She even complains about me not looking in her eyes when she talks, despite know that I'm not wired to do that. On the other hand, no one before pointed that out to me. What's the point of a diagnosis at 36 when all I'd do with it is show it people who wouldn't believe me otherwise?

dandersh 9y ago
I'm really sorry for you to have to go through this. Struggling with social interactions and the fallout is not easy, and it does not sound like you have the support you need. Have you tried talking to your wife and explaining that social situations are like other life experiences where some people enjoy/excel at them while others do not? Not everyone enjoys video games, sports, reading, etc. Not everyone is a social butterfly, and those who are not shouldn't have to feel embarrassed because of it.
cryptonector 9y ago
If you're a high-functioning adult, a diagnosis won't do much good -- you've already figured out what you needed to at least unconsciously. But suppose now that you have children. And one of your children is on the spectrum. If you know what to look for, you might save them and yourself a ton of stress.
- 9y ago

deleted 9y ago

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drefanzor 9y ago

I understand they have a disorder, and yeah, it's "not that bad", for SOME. But come on. My son has autism. He is 13, and still cannot speak. He has to have 24 hour care. I understand that autism is a spectrum, but realize that what they're talking about here is much different. It's like saying someone has a paralyzed pinky versus a being a quadriplegic.

TomK32 9y ago
Well, what's better: to have loved and lost it or never have loved at all? Can we answer this for him? Does your son know what the world around him is and what a neuro-typical person is like in that world? Us mild cases still need 20 or 30 years to realize what's wrong, that normal people do things differently than we though. When you try to fit in but know you might never do 100%, why bother keep trying? His disability is visible, the expectations lowered; but in darker time 70yrs ago his condition would have been his death sentence. I feel happy that times have changed and society and parents do care. Thank you.
cryptonector 9y ago
I've only known people on the extremes of the spectrum. I don't know anyone who is clearly "in the middle". I do wonder if it is a spectrum or just two different spectra, because I agree that the extremes are not really comparable. My heart goes out to you. I hope your son catches up eventually.
mercer 9y ago
What's your point?

jeandejean 9y ago

"Five times as many males as females are diagnosed", but the problem is of course that women are not diagnosed enough... What about there is a big problem in our society that make males more prone to autism that we should fix first? That article seems to be political rather than informative to me.

fhayde 9y ago
I'm inclined to agree. Perhaps I'm just getting old and cynical but it seems like a lot of people consider it a badge of honor to be diagnosed with some sort of neuro/psycho disability. Granted, that's not a terrible thing per se, because if nothing else, it means there's a significant shift away from the stigmatizing perception of the past. I just have a hard time accepting the celebratory nature of things like this. Similar to the body positivity movement, which itself is a healthy shift towards acceptance and responsibility, there's always a fringe element who seem to romanticize and glorify something. I personally believe it's because many people want to feel included in "something", and that's fine, I don't have a problem with that. I just get grumpy when the initial context goes from understanding the way a disorder can impact your life and raising awareness to "let's make an exclusive group to carve out a little island only me and other special people like me can hang out on". It feels a lot like the reason and purpose are hijacked and unfortunately the message gets lost and tainted, creating more of a backlash than anything else. I don't have a problem with exclusionary groups at all either; my issue is when they use the growing awareness of something else to piggyback off of. I dunno, that's my $0.02 that no one asked for lol.
cryptonector 9y ago
It's mostly anecdotal. That's not devoid of value even if not very informative (because anecdotal). It could also be political and still be of value.
205guy 9y ago
I think the point of articles like this one is to raise the question of whether autism as it is currently diagnosed in young children is actually only diagnosing "male-pattern autism." By looking at adult female cases, where the subject is able to reflect on their childhood and their late diagnosis, we might be able to formulate better screening for children so that the ratio isn't as skewed.

justgottasay3 9y ago

I think this is an interesting intersection with the recent episode of Full Frontal... in which the host points out that women appear to be under-served by Medicine. Are we failing half the population so completely?

anotherevan 9y ago

Both my kids are aspie. My son was diagnosed when he was seven because of some speech delay when he was younger and social awkwardness. My daughter was diagnosed at sixteen after two years of missed school and barely leaving the house due to incredibly high anxiety. Oh, and the first time she was assessed eighteen months prior she was only "borderline" aspie even though in retrospect she has been effected much more profoundly. (She also had a similar speech delay when she was younger too, btw.) We need to get a lot better at recognising the condition in girls, as we have with boys. § If you are wanting to know more about autism in all its flavours, google for just about anything by Tony Attwood. In more recent years he has been concentrating more on autism in women, so adding "women" to your search terms will surface specific material in that regard.

morgtheborg 9y ago

I wonder sometimes if I had Aspergers and just effectively trained myself out of it. All I did was read when I was a kid. At recess, at home, etc. I just read. I didn't really understand social interactions and when I left my family and went to boarding school for high school it became apparent I was extremely socially behind. Sitting in conversations trying to figure out a) what the heck people say, how do they even come up with something to say on inane topics? and b) when am I allowed to say the one thing I managed to find relevant? was excruciating during my early years. Being too literal, to this day, is a problem. Struggling with social norms around "honesty", another daily issue. The idea that lying is A-Okay (particularly in business) and that there are some thoughts/ideas I'm not supposed to share due to social norms hasn't come easy. I'm lucky I've opted into a career where it's assumed I'll be a little weird (software engineer), so it's given a pass when I'm too honest, literal, etc. For me, the big turning point was when I joined acting class my Sophomore year of HS. I basically just thought, "Oh, this is convenient! I'll just ACT like someone who is <x> and it'll all work out!" And, yea, for the most part that's been true. The difficulty of quickly sliding in between "me" and a "social mask" at work hasn't been fun, but overall I feel like the "mask" has become me a solid 40% of any given day to great positive effect. I still find a social situation to be a lot of work. If I allow myself to drink or do anything that fuzzes my brain at all so I stop DOING all that work of analyzing the room and figuring out how I'm allowed to engage appropriately while still being as much "me" as I can, well, then I spend probably the next 24 hours in a shame-cycle about how poorly I must've come off because I KNOW if I don't do that work then I'm dropping the ball in a million tiny ways. Early in my relationship with my SO anytime I had caffeine we fought...because I just stopped reading him and went off on my own happy little zig-zagging butterfly path. If he didn't explicitly say he was unhappy, I was not going to pick it up. It'd be nice to just be able to point to a diagnosis rather than have to blame myself for fucking up another social scene by letting my attention wander or drinking or whathaveyou. But, you know, I could just be a normal introvert who has to work at being social in an extroverted world... I sort of assume it's the latter.