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.
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.
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.
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.
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.
"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.
At least over here, one of the requirements for diagnosis is that it impacts your life negatively enough to benefit from being labeled and receiving treatment. What makes you think this is not the case?
My point is that the individual symptoms -- such behavioral rigidity and slow processing of sensory inputs -- can be treated appropriately (accommodations and therapy) without regard for whether they are "autism". It's not like "arm pain" -> "x-ray shows broken bone" -> "put a cast on it"
This is the viewpoint most similar to mine. Sometimes I relate strongly to the complaints of people identifying with ASD, and sometimes not. I have some of the traits to an extreme, and am utterly lacking in other traits deemed central to diagnosis. I didn't have any developmental problems besides socializing - in fact I was precocious about everything. My father is textbook ASD, but nobody else in the family is. We're just all introverted, geeky, oversensitive, and both over-empathetic and a little misanthropic. What to do? I consider the traits by themselves instead of labeled clusters of traits.
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.
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.
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.)
From my experience, it can definitely be learned. I went through a very deliberate process of approaching social interaction and communication skills as I would an interesting programming problem. I refined a mental model and tested it out (yes, with occasionally hilarious misfires). Thankfully none of the failures went beyond 'highly embarassing'.
It felt like most people have a social automatic pilot while I was flying entirely manually. Once I developed some models and internalised them it was as if I'd built my own approximation. It still takes a little effort to keep things level, but much less than it used to.
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.
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.)
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.
"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.
"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!"
Yes, and this is true of any mental issue. Hell, it's also true of physical ailments that don't leave obvious visible markers. Depressed? You don't seem depressed. Anxiety? You talk with people all the time. People don't always understand that this functioning is the result of a lot of invisible effort.
I'm sure that their are people out there that like to play the victim, but that doesn't mean that people's struggles aren't real.
> 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!
Wow, you really hit the nail on the head with this. Just look at all the people here trying to second-guess my own self-assessment!
You should consider the possibility that I have not given a complete description of my situation in a single HN comment from which one could properly diagnose me one way or the other. Maybe the aspects of my situation that would definitively decide the question one way or the other are too painful for me to air in public even after all these years, or maybe I just don't feel like baring my soul in public. Either way, I don't really care if you want to attach the label "disorder" to it or not. All I know is that it caused me a lot of pain and anguish well into my 20s and 30s, and it took a lot of years of concerted effort to change my situation. My point is not that I want to wear the scarlet A with pride, my point is that I was able to do something about it, whatever it was, and my life is immeasurably better for having made that effort. The rest is just quibbling over terminology.
I would be interested to hear what things helped you most in changing your situation, though! I'm still at an early stage of actually 'doing' stuff to improve things, so I'd be very curious to hear what worked for you.
Mainly just making a concerted effort, when something went wrong, to go back and analyze why it went wrong and what I should have done differently. It took a lot of trial and error (like 10-20 years worth), and even today I will sometimes freeze up in social situations because all of the things I can think of to do in some situation are being flagged as "wrong" based on some prior experience.
>
Mainly just making a concerted effort, when something went wrong, to go back and analyze why it went wrong and what I should have done differently. It took a lot of trial and error (like 10-20 years worth), and even today I will sometimes freeze up in social situations because all of the things I can think of to do in some situation are being flagged as "wrong" based on some prior experience.
Perhaps you should write this down as a concise theory with falsifiable predictions of what kind of social behavior people really expect.
One thing I learned only post-diagnosis is that all the stuff I thought I did to figure out how to fit in, in hindsight, was extremely scattershot and not very rational. A lot of the lessons I never learned as well as I thought I did.
These days I try to be more methodical (keeping logs, lists of lessons, etc), in part because I'm allowing myself to lean more into my 'nature', and it's already proven effective.
It is not completely obvious to me what kind of elaboration you desire. So if my longer explanation here misses the point this is probably the reason. :-)
In your trial to find out the strange rules of society you surely made unwillingly lots of accidental experiments that often went wrong. At the end you probably developed some kind of theory of how humans seem to behave, where each rule that you developed is backed up by evidence from an accidental experiment.
If you are interested in history of physics, you surely are aware that developing even what is called "classical mechanics" (I don't even want to start with electromagnetism, relativity or quantum physics) was a lifetime work of many generations of scientists. What a waste of time would it have been if everyone of them had to start from point 0.
So you accidentally have developed something that might be a start of some kind of theory of how people/society really behave(s) (rather think of pre-Newton physics, e.g. Galilei already found out that (ignoring air resistance) the falling time is independent of the mass and the falling time increases by square root of the height; of course where these "strange" laws with strong experimental evidence come from needed the invention of calculus).
So back to "What a waste of time would it have been if everyone of them had to start from point 0.". What a waste of time is it when people all the time had to derive all those laws to which "ordinary" people in society behave (and cannot explain why) from ground up.
So document the rules about people/society/... that you found out and document the experimental evidence that gives strong evidence to you that these rules that you state do indeed hold (a scientific theory is worth nothing if it is not accompanied by a proper documentation of the experimental evidence for it).
Perhaps (if it not embarrassing to you) it is a good idea to use tools that the web provides (e.g. some kind of wiki or Github) so that other people can cross-check your theories, validate your evidence or present counter-theories which also explain your experimental evidence.
You are in a very early phase in a theory of the hidden rules of society (as I told: think where Galilei was in terms of classical mechanics), so this means you probably have to consider lots of frustrating foundational questions. So you are perhaps a true pioneer. But I believe it is worth it, because this might enable researchers who work in AI better understand humans/society.
1. Smiling and making eye contact are both HUGE levers (but you have to be careful not to overdo it). (And an interesting thing about smiling is that it has a reverse-feedback effect: if you smile, it actually makes you feel happier.)
2. What you wear matters. It shouldn't, but it does. Read "Dress for success."
3. Spend more time listening than talking. Ask more questions than you answer, even if you know all the answers. The object of the game is not to show off how much you know, it is to provide others with opportunities to show off how much they know.
4. Help with the grunt work even when you think it is beneath you.
5. Con't complain. Ever. About anything. (This is just a first-order approximation. There are situations under which it's OK to complain, but that's an advanced course :-) And this is one of the few situations where erring on one extreme will not get you into trouble. To the contrary, if you cement a reputation as someone who never complains even when you have good cause to, people will like you more. I'm personally still working on this one.)
This really resonates with me. I consider myself to be on the spectrum, as does my wife, and I am frequently only a passive participant in social functions because I've learned that most of my normal interactions are "wrong" so I just watch and wait until we can leave.
A. You asserted that you had Asperger's and then proceeded to explain why you believe that. Forgive me for then expecting your explanation to actually have something to do with Asperger's and not be a list of generic personality traits. Read your other comments--I'm obviously not the only one who thought so.
B. Your "pain and anguish" is not relevant to the fact of whether or not you have Asperger's. Social anxiety causes pain and anguish.
C. People "do something" about social anxiety all the time, as they should. Good for them and good for you. Really. I still don't see what that has to do with Asperger's syndrome.
D. Pointing out that a common personality trait is not a brain disorder is not "quibbling over terminology".
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.
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.
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.
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.
> 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.
> 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.
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
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.)
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.
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.
I recognise your symptoms as Obsessively Compulsive.
I'm one of those people who has to hide his symptoms from everyone all the time and disguise them as "oops I think I dropped my keys, I need to go in an out of this doorway 12 times whilst checking it". I waste at least an hour of my life in my OCD rituals, and I'm all too aware of how I come across, to other people as well.
Your love for quantum mechanics might just be that, your love for QM.
That sounds more like OCD. You don't observe anything like sensoric hypersensitivity? or looking at peoples lips, not the eyes, when they talk? or somewhat lack of empathy and emotions? or a strong sense for justice?
Apart from communicating with very close friends and relatives, social interaction can be quite difficult and exhausting, to the point where I self-analyse what I have previously said, and how weirdly people may have received it. Only alcohol makes me more "social" to strangers. Strong sense for justice, yes.
I find it pretty common for people to tell me I'm not on the spectrum when I reveal it, as if in 5 minutes they have a better handle on me than I do. It's helped me understand just how annoying "mansplaining" can be (even when it's done by a woman.)
That's important though... you can feel like you have something but actually have something pretty different. I understand that it must be pretty annoying for you if you are actually diagnosed but sadly, believing an internet diagnostic is too often a pretty bad decision.
no OP here, but it matters. for example, in a relationship there's guaranteed to be problems, something observed with aspies is that they are less romantic once a set goal has been reached (sounds weird, I know). if your partner does not belief or accept you, then it turns into hell, at least for me. frustrations on both sides because expectations are not met, communication problems, that not-looking-into-eyes bug, all of that could be lessened with some understanding.
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.
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.
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.
> 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."
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.
>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.
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.
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.
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..."
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.
After diagnosis? There are no drugs specifically indicated for treating ASD. You might find people on the spectrum getting prescribed ADHD meds, say, but I understand that's more of the exception nowadays.
I am the stepfather of a 14YO girl with rather severe autism (non-verbal, significant self-stimulation or "stimming/stims", multiple comorbidities like OCD behaviors), and about a month ago our adopted 3YO daughter was also diagnosed based on interviews with us and a couple/few hours with a doctor.
The diagnosis of the 3YO will provide access to several services where I live (NY state), and she's already been enrolled in an early education class with others on the spectrum. Before turning 3 she was receiving about 2 hours of in-home speech and therapy per week.
Get her to a doctor for diagnosis, as early services can be very helpful in long-term outcomes. We also had early services for the 14YO that unfortunately were not entirely effective due to the seriousness of her condition, but we're optimistic that the 3YO could be in general education classes by elementary school.
My 8 year old daughter is on the spectrum (diagnosed level 1; normal IQ in the 110ish range), and the diagnosis has helped us get intensive in-school support. She's doing well academically, but needs support in writing and social skills. Her diagnosis was essential to getting her the help she needs.
I also highly recommend living in a place with a decent school system and a well staffed special education department. Without that, my daughter would be floundering academically and socially isolated.
For us the diagnosis is a formality and a means to another end: access to resources in our child's school, protection for him from punishing him due to behavior that is a result of his condition, and formal recognition by our insurer to ease accepting claims for his therapy.
> protection for him from punishing him due to behavior that is a result of his condition
That's an interesting and problematic aspect.
My wife is a teacher and has started to encounter that attitude more frequently. "He gets angry because he is ${diagnosis}, you can't punish him for it". But when it disrupts the class, and encourages others to behave similarly, then some response is needed to mitigate the situation. There is a responsibility to the class as well as the individual.
Defining that response is the problem. In one example from a local school the child was given shorter school hours as an incentive towards controlling their behaviour. Which is exactly the opposite of what 'normals' receive, detention for disruptive behaviour.
My wife's sister is a teacher, too. I agree that defining that response is the problem. Especially for behavioral issues the balance you note is important. That's why extreme cases (e.g. non-verbal, violent meltdowns) are allowed to be segregated from general education classrooms when necessary.
We don't begrudge wheelchair bound students ramps to access rooms. We shouldn't deny children with "${diagnosis}" driven behavior alternatives to punishment when it's appropriate.
Edit: For what it's worth, I also think punishment is too often a first-resort by schools for all children. This is a complex issue driven in part by the horrific way we under-fund schools. Many of these problems would be much less significant if we funded schools well enough to provide the support they should (and are legally required to).
You have to deal with disruption. No doubt. A typical problem might be that the kid just isn't conscious of things like homework assignments: laziness, or ASD? If laziness, then discipline should help. If ASD then discipline won't help, but therapy might. Knowing really helps.
Having the right diagnosis is important. Who wants to end up taking powerful medicines for the wrong condition?? Sure, if you have no diagnosis then you won't take the wrong meds either, but that's not a reason to avoid a diagnosis.
Disruptive behaviour is just the results, the cause might be exhaustion due to the classroom being to much for the nervous system. Over-sensitive hearing is one common symptom and for me it's hard to imagine how normal people manage to have a conversation in a room with more people having other conversations. Too many kids around, that's too many social interactions that are preferably avoiding. Allowing an autistic kid to stay back in the classroom and not being force to go out to play in the breaks is one solution I've read in a book. Shorter hours, less or no homework, less or no expectations in their learning progress can help.
Remember: Autists have to learn and cope with this new social situation first before they have the strength to progress intellectually. But even when the kid is normalizing, careful not to overwhelm them again, because they might use up all their energy for the school day and just break down at home.
School is a horrible place if there's the same treatment and the same expectations on every kid.
> My wife is a teacher and has started to encounter that attitude more frequently. "He gets angry because he is ${diagnosis}, you can't punish him for it". But when it disrupts the class, and encourages others to behave similarly, then some response is needed to mitigate the situation.
Who says this mitigation has to be a punishment? I am also skeptical concerning punishments for neurotypicals in similar situations.
> it is not our daughter's fault that she behaves this way
That would be true no matter what. There's no basis for the full concept of "free will". Everyone is a product of biology, culture, context, etc. etc.
The question is what capacity people have to behave in various ways given certain contexts. Most people can behave "normally" given the right context to do so. I suppose your daughter does not have that capacity (at least not to the normal level). So, having realistic expectations helps a lot.
We all get angry at times, but it barely ever helps anything, and that's true regardless of all these other questions about autism etc.
If she has something that can be diagnosed, it can help with schooling in the U.S. (and probably elsewhere).
In the U.S. Federal law requires public schools to provide some forms of accommodations. Search for "section 504 of the Rehabilitation Act of 1973". Accommodations range from the trivial, like getting to sit up front in class or getting reminded to write down assignments, to things like getting an extra day for homework or getting access to remedial teaching or tutoring. Some of these could greatly relieve stress.
"My kid never even realizes that homework was assigned, and the teachers are not good enough about noting assignments online in a timely manner, so she's always late to turn them in or misses them completely, so she's failing her classes even though she gets A's in all the tests!" -- if you find yourself saying something like that, then you need some 504 meetings! An official diagnosis from a psychiatrist might not even be necessary, i don't know, but certainly a therapist might prove useful anyways in helping your child get more out of life.
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
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.
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.
> "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.
"Some people see a formal diagnosis as an unhelpful label, but for many, getting a timely and thorough assessment and diagnosis may be helpful because:
it helps people with Asperger syndrome (and their families, partners, employers, colleagues, teachers and friends) to understand why they may experience certain difficulties and what they can do about them
it allows people to access services and support." - http://www.autism.org.uk/about/what-is/asperger.aspx
Also, if you read the article, you will see, that for people with ASD usually find the diagnosis as a relief.
Also, I'm not sure, if you talked to any parents with kid(s) with ASD diagnosis, ask them about what is different since the diagnosis.
Also, please try to show a little more empathy because your comment is hurtful to Aspies who felt that the diagnosis changed their life.
I've worked with kids with autism, I can tell you your comment is very accurate in my experience. The amount of difference between kids with autism (in the way it presents itself) is huge. Its not a single disorder.
> 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?
It's not as much pathologizing, for me personally, it's got more to do with self-discovery and having some kind of independent and external feedback for it.
I can introspect a whole lot about why I am the way I am, but that perspective can never be objective on its own due because it's all subjective to my internal memories, interpretations, and perspective, which will be biased and flawed in ways unrecognizable to me.
A diagnosis gives the feeling of defining something about one-self there, nothing just imagined by that person, but confirmed by an external person, an "expert in the field" too.
If you tend to OCD about certain topics, like personality/consciousness, this can have the interesting allure of giving some supposed certainty that probably never can be given.
Right, we all just stop playing with legos, spend more time at the playground and don't do math before the age of 5 and no more autism?
Sorry mate but cancer is something you develop later on and can influence with your lifestyle, Autism is something that burnt into your brain from the very start.
When you say diagnosis-as-scapegoat your probably refer to an increase of diagnosis, but that is simply explained by the increased knowledge of the condition.
For children, one advantage of having a formal diagnosis is that it allows access to funding for support resources during school. Such as having a teacher's assistant available in class to provide additional 1 on 1 teaching time.
All that ADHD might well have been a red herring, and it was Asperger's all along. When all you have a is a handy drug, everything begins to feel like the sort of condition you could treat with that drug!
Knowing that you're "on the spectrum", no matter how subjective or meaningless you might think it is, can be very helpful to the person and their loved ones.
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?
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).
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.
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.
"try to mimic others, act normal" is mild-to-moderate autism, and leads to challenges like not realizing that it's so much harder (in mental effort) for one person to perform behaviors that are so easy for most people.
Severe autism has symptoms like nonverbality (unless treated with years of intensive communication therapy), extreme repetitive behaviors (tapping, bouncing, etc), and freakouts/meltdowns in response to unexpected situations and sensory inputs, of the sort of intensity and sensitivity well beyond what you'd see in the average person over the age of about 7years.
In years past people might not have been able to pinpoint "autism", but disregarding the minor important of the label, it was still easy to see a lot of what was going on with the person with the condition. (Effective _treatment_ is of course much harder than mere diagnosis.)
Absolutely. The autistic person will effectively understand social cues only at an academic level, after effort teaching him or her. Autists can also be shy or not, by the way.
They can interact freely and happily with others socially but miss cues in ways a shy person won't. For example, if a shy person has overcome their shyness and their play partner starts crying the shy person will empathize and possibly even try to get help, while the autistic person is as likely to simply walk away because their play partner is no longer providing stimulus.
It's difficult to describe in a comment on HN, but even mildly autistic behavior in this regard is very obviously different from normal behavior.
Yes. I have recently been diagnosed and am not "shy" or "socially anxious" yet I tend to avoid social interactions because they don't tend to go well unless they have some sort of typical "script", or some sort of structure around them (e.g. an interview, MC-ing, a meeting). I could go into the differences in some depth but it may prove boring.
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.
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.
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.
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".
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).
> 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).
> 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.
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.
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 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.
> 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.
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.
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.
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.
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.
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.
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.
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’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.
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.
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.
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.
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).
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.
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.
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.
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.
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 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.
> 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.
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.
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'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.
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, depres...
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. :)
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.
Hi Raymond. 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?
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.
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.
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.
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.
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?
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.
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.
Already have one, perfect child, active, social, caring, chatty, curious, definitely nowhere near the spectrum. Which is a relief because on her mother's side there's a brother on the spectrum.
But I'm able to spend a lot of time with my little family, so that makes it easy for me to grow with our child, make sure she doesn't feel rejected because I'm a weird guy.
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.
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.
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.
"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.
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.
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.
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.
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.
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...
206 comments
[ 3.0 ms ] story [ 248 ms ] thread[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.
Haha, same here!! Does it mean I might be an "Aspie" too???
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.
The label itself doesn't provide more meaning than whatever individual specific characteristics a person exhibits to what extents.
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.
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.
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.)
It felt like most people have a social automatic pilot while I was flying entirely manually. Once I developed some models and internalised them it was as if I'd built my own approximation. It still takes a little effort to keep things level, but much less than it used to.
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.)
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.
Yes, and this is true of any mental issue. Hell, it's also true of physical ailments that don't leave obvious visible markers. Depressed? You don't seem depressed. Anxiety? You talk with people all the time. People don't always understand that this functioning is the result of a lot of invisible effort.
I'm sure that their are people out there that like to play the victim, but that doesn't mean that people's struggles aren't real.
Wow, you really hit the nail on the head with this. Just look at all the people here trying to second-guess my own self-assessment!
Perhaps you should write this down as a concise theory with falsifiable predictions of what kind of social behavior people really expect.
One thing I learned only post-diagnosis is that all the stuff I thought I did to figure out how to fit in, in hindsight, was extremely scattershot and not very rational. A lot of the lessons I never learned as well as I thought I did.
These days I try to be more methodical (keeping logs, lists of lessons, etc), in part because I'm allowing myself to lean more into my 'nature', and it's already proven effective.
It is not completely obvious to me what kind of elaboration you desire. So if my longer explanation here misses the point this is probably the reason. :-)
In your trial to find out the strange rules of society you surely made unwillingly lots of accidental experiments that often went wrong. At the end you probably developed some kind of theory of how humans seem to behave, where each rule that you developed is backed up by evidence from an accidental experiment.
If you are interested in history of physics, you surely are aware that developing even what is called "classical mechanics" (I don't even want to start with electromagnetism, relativity or quantum physics) was a lifetime work of many generations of scientists. What a waste of time would it have been if everyone of them had to start from point 0.
So you accidentally have developed something that might be a start of some kind of theory of how people/society really behave(s) (rather think of pre-Newton physics, e.g. Galilei already found out that (ignoring air resistance) the falling time is independent of the mass and the falling time increases by square root of the height; of course where these "strange" laws with strong experimental evidence come from needed the invention of calculus).
So back to "What a waste of time would it have been if everyone of them had to start from point 0.". What a waste of time is it when people all the time had to derive all those laws to which "ordinary" people in society behave (and cannot explain why) from ground up.
So document the rules about people/society/... that you found out and document the experimental evidence that gives strong evidence to you that these rules that you state do indeed hold (a scientific theory is worth nothing if it is not accompanied by a proper documentation of the experimental evidence for it).
Perhaps (if it not embarrassing to you) it is a good idea to use tools that the web provides (e.g. some kind of wiki or Github) so that other people can cross-check your theories, validate your evidence or present counter-theories which also explain your experimental evidence.
You are in a very early phase in a theory of the hidden rules of society (as I told: think where Galilei was in terms of classical mechanics), so this means you probably have to consider lots of frustrating foundational questions. So you are perhaps a true pioneer. But I believe it is worth it, because this might enable researchers who work in AI better understand humans/society.
1. Smiling and making eye contact are both HUGE levers (but you have to be careful not to overdo it). (And an interesting thing about smiling is that it has a reverse-feedback effect: if you smile, it actually makes you feel happier.)
2. What you wear matters. It shouldn't, but it does. Read "Dress for success."
3. Spend more time listening than talking. Ask more questions than you answer, even if you know all the answers. The object of the game is not to show off how much you know, it is to provide others with opportunities to show off how much they know.
4. Help with the grunt work even when you think it is beneath you.
5. Con't complain. Ever. About anything. (This is just a first-order approximation. There are situations under which it's OK to complain, but that's an advanced course :-) And this is one of the few situations where erring on one extreme will not get you into trouble. To the contrary, if you cement a reputation as someone who never complains even when you have good cause to, people will like you more. I'm personally still working on this one.)
A. You asserted that you had Asperger's and then proceeded to explain why you believe that. Forgive me for then expecting your explanation to actually have something to do with Asperger's and not be a list of generic personality traits. Read your other comments--I'm obviously not the only one who thought so.
B. Your "pain and anguish" is not relevant to the fact of whether or not you have Asperger's. Social anxiety causes pain and anguish.
C. People "do something" about social anxiety all the time, as they should. Good for them and good for you. Really. I still don't see what that has to do with Asperger's syndrome.
D. Pointing out that a common personality trait is not a brain disorder is not "quibbling over terminology".
E. No offense was intended.
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.
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.
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.
These are not signs of Asperger’s.
Its also more common in industries that most of the HN commentators work in as is the film tv and theatre industry
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.
Number 3 may be as well; I'm not that familiar with OCD.
I recognise your symptoms as Obsessively Compulsive.
I'm one of those people who has to hide his symptoms from everyone all the time and disguise them as "oops I think I dropped my keys, I need to go in an out of this doorway 12 times whilst checking it". I waste at least an hour of my life in my OCD rituals, and I'm all too aware of how I come across, to other people as well.
Your love for quantum mechanics might just be that, your love for QM.
That's important though... you can feel like you have something but actually have something pretty different. I understand that it must be pretty annoying for you if you are actually diagnosed but sadly, believing an internet diagnostic is too often a pretty bad decision.
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.
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."
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.
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.
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?
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.
Autistic people are routinely over-medicated, and that over medication one reason for the difference in life-span for autistic people.
The diagnosis of the 3YO will provide access to several services where I live (NY state), and she's already been enrolled in an early education class with others on the spectrum. Before turning 3 she was receiving about 2 hours of in-home speech and therapy per week.
Get her to a doctor for diagnosis, as early services can be very helpful in long-term outcomes. We also had early services for the 14YO that unfortunately were not entirely effective due to the seriousness of her condition, but we're optimistic that the 3YO could be in general education classes by elementary school.
(If that statement sounded weird, that's the point.)
I also highly recommend living in a place with a decent school system and a well staffed special education department. Without that, my daughter would be floundering academically and socially isolated.
That's an interesting and problematic aspect.
My wife is a teacher and has started to encounter that attitude more frequently. "He gets angry because he is ${diagnosis}, you can't punish him for it". But when it disrupts the class, and encourages others to behave similarly, then some response is needed to mitigate the situation. There is a responsibility to the class as well as the individual.
Defining that response is the problem. In one example from a local school the child was given shorter school hours as an incentive towards controlling their behaviour. Which is exactly the opposite of what 'normals' receive, detention for disruptive behaviour.
We don't begrudge wheelchair bound students ramps to access rooms. We shouldn't deny children with "${diagnosis}" driven behavior alternatives to punishment when it's appropriate.
Edit: For what it's worth, I also think punishment is too often a first-resort by schools for all children. This is a complex issue driven in part by the horrific way we under-fund schools. Many of these problems would be much less significant if we funded schools well enough to provide the support they should (and are legally required to).
Having the right diagnosis is important. Who wants to end up taking powerful medicines for the wrong condition?? Sure, if you have no diagnosis then you won't take the wrong meds either, but that's not a reason to avoid a diagnosis.
Remember: Autists have to learn and cope with this new social situation first before they have the strength to progress intellectually. But even when the kid is normalizing, careful not to overwhelm them again, because they might use up all their energy for the school day and just break down at home.
School is a horrible place if there's the same treatment and the same expectations on every kid.
Who says this mitigation has to be a punishment? I am also skeptical concerning punishments for neurotypicals in similar situations.
That would be true no matter what. There's no basis for the full concept of "free will". Everyone is a product of biology, culture, context, etc. etc.
The question is what capacity people have to behave in various ways given certain contexts. Most people can behave "normally" given the right context to do so. I suppose your daughter does not have that capacity (at least not to the normal level). So, having realistic expectations helps a lot.
We all get angry at times, but it barely ever helps anything, and that's true regardless of all these other questions about autism etc.
In the U.S. Federal law requires public schools to provide some forms of accommodations. Search for "section 504 of the Rehabilitation Act of 1973". Accommodations range from the trivial, like getting to sit up front in class or getting reminded to write down assignments, to things like getting an extra day for homework or getting access to remedial teaching or tutoring. Some of these could greatly relieve stress.
"My kid never even realizes that homework was assigned, and the teachers are not good enough about noting assignments online in a timely manner, so she's always late to turn them in or misses them completely, so she's failing her classes even though she gets A's in all the tests!" -- if you find yourself saying something like that, then you need some 504 meetings! An official diagnosis from a psychiatrist might not even be necessary, i don't know, but certainly a therapist might prove useful anyways in helping your child get more out of life.
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
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.
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.
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.
it helps people with Asperger syndrome (and their families, partners, employers, colleagues, teachers and friends) to understand why they may experience certain difficulties and what they can do about them it allows people to access services and support." - http://www.autism.org.uk/about/what-is/asperger.aspx
Also, if you read the article, you will see, that for people with ASD usually find the diagnosis as a relief.
Also, I'm not sure, if you talked to any parents with kid(s) with ASD diagnosis, ask them about what is different since the diagnosis.
Also, please try to show a little more empathy because your comment is hurtful to Aspies who felt that the diagnosis changed their life.
It's not as much pathologizing, for me personally, it's got more to do with self-discovery and having some kind of independent and external feedback for it.
I can introspect a whole lot about why I am the way I am, but that perspective can never be objective on its own due because it's all subjective to my internal memories, interpretations, and perspective, which will be biased and flawed in ways unrecognizable to me.
A diagnosis gives the feeling of defining something about one-self there, nothing just imagined by that person, but confirmed by an external person, an "expert in the field" too. If you tend to OCD about certain topics, like personality/consciousness, this can have the interesting allure of giving some supposed certainty that probably never can be given.
Sorry mate but cancer is something you develop later on and can influence with your lifestyle, Autism is something that burnt into your brain from the very start.
When you say diagnosis-as-scapegoat your probably refer to an increase of diagnosis, but that is simply explained by the increased knowledge of the condition.
Knowing that you're "on the spectrum", no matter how subjective or meaningless you might think it is, can be very helpful to the person and their loved ones.
"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%...
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.
Severe autism has symptoms like nonverbality (unless treated with years of intensive communication therapy), extreme repetitive behaviors (tapping, bouncing, etc), and freakouts/meltdowns in response to unexpected situations and sensory inputs, of the sort of intensity and sensitivity well beyond what you'd see in the average person over the age of about 7years.
In years past people might not have been able to pinpoint "autism", but disregarding the minor important of the label, it was still easy to see a lot of what was going on with the person with the condition. (Effective _treatment_ is of course much harder than mere diagnosis.)
They can interact freely and happily with others socially but miss cues in ways a shy person won't. For example, if a shy person has overcome their shyness and their play partner starts crying the shy person will empathize and possibly even try to get help, while the autistic person is as likely to simply walk away because their play partner is no longer providing stimulus.
It's difficult to describe in a comment on HN, but even mildly autistic behavior in this regard is very obviously different from normal behavior.
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.
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 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.
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.
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.
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".
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).
> [...]
> 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.
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.
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.
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.
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.
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'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.
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.
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.
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.
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.
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.
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...
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.
Having a problem doesn't mean your condition need be considered pathological.
The majority is always sane.
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.
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.
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.
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.
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.
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.
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.
https://en.wikipedia.org/wiki/Autism_rights_movement
https://en.wikipedia.org/wiki/Neurodiversity
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.
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.
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.
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.
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, depres...
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.
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.
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.
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 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.
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!
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?
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.
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 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. :(
Why are people accepting this events so lightheartedly?
Teachers are not really equipped to deal with it either.
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.
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?
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.
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.
That article seems to be political rather than informative to me.
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.
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.
Are we failing half the population so completely?
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.