8 ms·

‘I Thought I Was Lazy’: The Invisible Struggle for Autistic Women (2017)

94 points by anotherevan 7y ago

anotherevan 7y ago
Found the discourse about Executive Function in this article very interesting. I want to understand this further.
officemonkey 7y ago
Executive Functioning seems to be the key "worker bee" trait that is valued in school and the workplace. To be honest, in a different society (one that isn't focused on on-line communication, extreme productivity, and always on connections), executive functioning becomes a much less valued trait.
- cheesymuffin 7y ago
  Luddism is quite the meme lately. Hope it dies soon.
  - officemonkey 7y ago
    Then get better at serving the entire spectrum, not just the profitable parts.
  - CuriouslyC 7y ago
    Progress (in a lot of areas) hasn't been making people happier. In fact, despite our material success, we appear to be less happy than our predecessors. What you're witnessing isn't fear of change, it's people questioning the idea that "progress" is necessarily good.
    - badpun 7y ago
      > In fact, despite our material success, we appear to be less happy than our predecessors. Which predecessors? We can't really tell how a medieval peasant felt, as they didn't leave any articulate accounts. The accounts left later are generally non-representative, as people who left them were privileged (they were not illiterate). As for the more modern times, not more than 100 years ago alcoholism (strongly correlated with depression) was so rampant that the US banned alcohol sales altogether.
      - CuriouslyC 7y ago
        Specifically, I've seen data for post-WW2 America (at least until mid 70s) being much happier than current.
        badpun 7y ago
        1. That was a period of super-high growth. Seeing positive change is one's life is one of the greatest contributors to happiness (one easy way to tap into this mechanism would be to have a terrible war that destroys everything, and then just have get their lives on track again). 2. Culture changed. In the past, people were told by society to not complain about their mental state, whereas now people are opened up almost to the point of being exhibitionistic. So, you cannot really compare reports from 50 years ago with today's numbers.
- windlep 7y ago
  I don't believe the "worker bee" trait you mention has much correlation with executive functioning. The way I've heard/seen it described in ADHD research is more that without executive functioning, putting together events in the past, applying them to the present, with a thought to the future outcome is the main issue. When your executive functioning is poor, your decision making is severely impacted because the ability to chain together past experiences with the current situation to chart a good outcome fails to come together. So if you wanted to make up a situation in the past that isn't a 'school or workplace', imagine someone on the hunt, failing to correctly interpret signs of a dangerous animal nearby and take appropriate precautions, and therefore dies. That would be a failure of good executive function. The traits identified in ADHD materials like these (below) are effectively a different way of phrasing the same outcome but those with ADHD may be lacking more in one of these distinct areas: https://www.understood.org/en/learning-attention-issues/child-learning-disabilities/executive-functioning-issues/3-areas-of-executive-function https://www.understood.org/en/learning-attention-issues/chil...
- earenndil 7y ago
  > To be honest, in a different society (one that isn't focused on on-line communication, extreme productivity, and always on connections), executive functioning becomes a much less valued trait I don't think so. I mean, I see what you're saying, that many of these demands on our attention are extraneous—bordering on useless. But, and I speak from personal experience as someone who struggles with executive function, that as a problem is disconnected from executive function. To me, what executive function means is that I have projects that I am interested in, that I would like to work on, that I would be happier for having completed, that I am unable to complete. That, like the subject of the article, I want to go and meet my friends for lunch, but have to cancel. Eradicating the 'productivity culture' might, as a side effect, reduce the level of executive function required, but they are not tied to one another. Having executive function means being able to do the things that I want to do, when I want to do them.
  - mercer 7y ago
    > To me, what executive function means is that I have projects that I am interested in, that I would like to work on, that I would be happier for having completed, that I am unable to complete. What you are interested and what you like to work on (and how you should go about this) is in part informed by said 'productivity culture'. The same goes for meeting friends. I've lived in environments/cultures where the need for 'executive functioning' to pull this off was almost zero, because it'd just be part of the rhythm of life rather than some planned activity. Just to provide a bit of counterpoint; not saying you're all wrong.
    - officemonkey 7y ago
      Also, to add some more counterpoint... >I have projects that I am interested in, that I would like to work on, that I would be happier for having completed, that I am unable to complete. That sounds a lot like how depression treats me. I have these "impossible tasks" that sit there undone. And the "lazy procrastinator" in me (thanks, mom) does them at the last possible second. I think a lot of the "time management" self-help books out there is an honest effort at casting around at ANY way that can help a person become more productive. Whether it's values-based, or workflow-based, or something that just reduces the friction. Sadly, like most of the self-help genre, if you don't "become more productive," you're a bad person. Asking Neurodivergent people to compensate for executive functioning skills that don't come easy is bound to fail.
- orbifold 7y ago
  Yeah because if you struggle for survival in the Savanna people with low executive function are highly valued. If anything the modern world gives plenty of opportunity for disorganized slightly autistic people.
  - jacobush 7y ago
    You jest, but it maybe isn't that simple. People with those traits often perform well under pressure when the stakes are high and the goals are clear. "Slacking" off later might have saved valuable energy - I don't know but reality is often much more complicated than what it looks like at first glance.
1990 7y ago
This is garbage. And it points directly to an agenda baked into the dual pronged attack by medicine and education, starting in the 1990's, with the introduction of Ritalin to combat the very first of the "diseases of social inconvenience" which we know as attention deficit disorder. It wasn't a real illness then, and it isn't now, but this push to "treat" the "disease" came at a time when public service announcements raised alarms on TV about how America was behind other countries in math and reading. So, here we are, medicating people who find boring things boring. And that's both public schools and modern medicine at work. Compulsory attendance, and doctors orders come together to make America competitive on the global stage. But it didn't stop with Ritalin and ADD. Like any program, there were advancements, and soon there was also ADHD. And notice that most of this is all a strategic approach to box obnoxious children into a corner, and make them behave in class? With each advancement, we shed light on other defects that were previously outshined by the more obvious pains in the proverbial ass. Once the busy bodies were calmed down, other problem children needed attention. And lo, autism became a spectrum. And with heightened deception, because now you could be seduced by the idea of the savant. Maybe it was a path to ...genius? So, take a hard look at these illnesses of mild ineptitude. Because there's another reality behind them. That reality is one where the social fabric of familial bonds has been torn to shreds, and replaced with clinical metrics. We used to have siblings, and mothers and fathers, and aunts and uncles, and cousins and nieces and nephews. People would put up with one another. But now there's nothing of the sort, and no one to rely on. With divorce and economics, it's lots of single mothers and families that can't afford to raise anything but a single only child. No more brothers and sisters, and mom and dad dehumanize each other with lawyers and custody battles, and a rotating cast of step relatives. So these diseases of inconvenience arise from poor socialization, and abstract social demands that having nothing to do with simply being a human. School is boring and sucks. And being raised by selfish assholes as an only child is its own nightmare. Maybe the United States has become slightly more competitive in STEM fields, but how? By plying kids with medication? By twisting the arm of any freak of nature that fails to comply with behavioral norms? I don't have a solution, because, in part, there are some real problems, but there is no illness or disease, and medication and stigma aren't the way forward. But without a doubt, this started in the 1990's and there's no end in sight.
Mirioron 7y ago
The behaviors described in the article remind me very strongly of ADHD. It makes sense, because the article talked about Executive Function and people have long suggested that a better name for ADHD would be Executive Function Deficit Disorder (EFDD). Furthermore, ADHD and ASD seem to commonly occur together: >studies show that between 30 and 50% of individuals with ASD manifest ADHD symptoms (particularly at pre-school age), and similarly, estimates suggest two-thirds of individuals with ADHD show features of ASD (Davis and Kollins, 2012). [0] Perhaps looking into treatments for ADHD could help? [0] https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4010758/ https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4010758/
- bitwize 7y ago
  ADHD is highly comorbid with autism. In some cases, an ADHD diagnosis may in fact be autistic symptoms that the diagnosing clinician failed to recognize as autism.
  - zaphirplane 7y ago
    That is interesting my impression (tv/random articles ) was autism was very far away from the hyperactivity in ADHD
    - kosma 7y ago
      It's an unfortunate stereotype. ADHD has loose subtypes of "mostly hyperactive" and "mostly attention deficient"; and autism spectrum consists of introverts and extroverts just as much as the general population.
      - coroxout 7y ago
        Another stereotypically-opposite but actually possibly related pairing I find interesting: the OCD stereotype is "neat freaks" (not all that accurately, because hoarding is also compulsion-related, and many types of OCD operate on a different axis to neat/messy anyway), and the ADHD stereotype is messy and chaotic, but in a way they both centre around not being able to control what your mental runtime is spent on.
Justsignedup 7y ago
Still find it impossible to find resources where to get tested as an adult.
- leoc 7y ago
  IME psychiatrists who treat this kind of thing in children and adolescents usually seem to be willing to diagnose an adult as well.
- monkeydreams 7y ago
  Lordy - it took me ages. One psychiatrist went so far as to castigate me for my lack of spirituality (she was shocked when I said I didn't believe in god) and then went on to suggest that I had "repressed memories" of childhood neglect. While we are making shit up, why not make up an ASD diagnosis that actually fits the symptoms I'm reporting...
- kosma 7y ago
  I've been there; the irony is that the resource you're looking for is people. Find & join your local autistic community (the actually autistic people, not the moms or professionals); they know where to get a diagnosis. It's ironic because it's an autism thing to consult websites, books, etc., but not other people.
  - nostrebored 7y ago
    Choosing from the group of people who have been diagnosed to see who they can recommend to examine you... you realize that this is the worst form of selection bias, right?
    - kosma 7y ago
      The reality of seeking diagnosis as an adult is that you get endlessly dismissed. I've been told I can't possibly be autistic because I can make eye contact, can talk, drive a car, or get to the appointment by myself. I've been misdiagnosed with and medicated for ADHD, personality disorders & OCD. The blatant incompetence of mental health professionals and complete lack of proper support and understanding drove me to the brink of suicide. So... yes, it's a bit of a selection bias, but the other option of searching at random - and getting hurt along the way - is just hell. False positives are rare and inconsequential; false negatives destroy lives. It's as simple as that.
kosma 7y ago
Side note: executive functioning is greatly impaired by stress, anxiety, lack of sleep, depression, etc. Those are very common in autistic people (due to lack of support and an unfriendly environment, not because of autism itself), making the symptoms much worse. Being unable to perform the basic planning & tasks causes even more stress & anxiety. It's a vicious cycle. There's still a huge blind spot in the way we approach autism, where we try to address the symptoms without having a critical look at the person's environment. (I'm autistic myself; and with proper support and environment I have very little executive functioning problems. Without them, I struggle with the most basic planning & tasks.)
- nnq 7y ago
  > executive functioning is greatly impaired by stress, anxiety, lack of sleep, depression, etc. This 1000 times over! Took me ages to realize that once you get "down" enough (either depressive or overwork-burnout or scared-to-death-by-social-anxieties), you can't think and plan right anymore so you just sink lower and lower down a spiral unless you get some outside help, stimuli and feedback. EF-malfunction is insidiuous because you just don't realize "how broken your mind really is", you just make bad decision after bad decision on all planes of life, health, finance, business, social etc. thinking you're one step away from "finding what works for you". But you can't successfully find "what works for you" with a broken-EF-brain, because you're mainly randomly sampling the possible space of behaviors and attitudes and your chance to find a 'right' set of such things is practically zero! Most things in the world don't 'work for you' and without planning and discipline you can't navigate your life and mind to what works!
  - coroxout 7y ago
    This sounds disturbingly familiar. You try, but it ends badly repeatedly, sometimes unobtrusively, sometimes suddenly and catastrophically and in public, until the memories of those times plus fears of everyone's second-guessed reactions put you off doing anything; you go so long without succeeding at planning and discipline that even trying seems alien and scary; add the two together and you're well into "learned helplessness" territory. As you say, sampling the space of behaviours and getting apparently random, mostly negative results back and wondering why your mental map of cause/effect and effort/outcome makes no sense whatsoever. So... what does one do, when in broken-EF state for so long?
i4t 7y ago
naah, I wished. But I'm just lazy.
oeuviz 7y ago
What exactly makes people feel better when they know the source of a deficit, even though there is no improvment of handling it? Diagnosing someting would only make me feel better if I could treat for it.
- DanBC 7y ago
  You can ask for reasonable adjustments in the workplace. You now have a reason that explains the difficulties you've had in your life. You can understand why situations are difficult or overwhelming for you, and what you need to do to cope with those situations.
  - oeuviz 7y ago
    Thanks, I guess I've been too ignorant to see this myself. Would be interesting though to learn how knowledge of the syndrome will help tidying up the bedroom.
- barry-cotter 7y ago
  1) “It’s not my fault, I have a disease.” 2) You can see how other people with similar problems deal with them. 3) You can talk to other people and they get it, they understand. For some people it’s like they suddenly find their people, like when someone who’s been reading HN for years goes to Silicon Valley and realises this is what it’s like to be surrounded by people who care about your interests or when you go from being the guy at your gym who’s trying to lift heavy to joining a powerlifting gym. Suddenly people understand.
  - oeuviz 7y ago
    Thank you, sounds reasonable!
- TeMPOraL 7y ago
  One extra underappreciated benefit: you can tell the people saying you have a moral deficiency to shut up. (Sometimes not directly in this antagonistic way; just telling you have a particular diagnosed condition can make the annoying people in your life suddenly very compassionate.)
kareninoverseas 7y ago
I am probably somewhere on the spectrum. I am probably also going to avoid actively going out and getting myself diagnosed, since as this article suggests, public and professional perception is such that it is extremely difficult to get someone to diagnose you, and that once diagnosed, people might not take the diagnosis seriously anyway. I think that simply being aware that my brain runs on a different set of batteries--ones that make it easy for me to get hyperfocused on a task, and also ones that make me prone to overthinking--is one of the more useful outcomes of a formal diagnosis. Thankfully I can do that part by myself and with my close friends and family. Unfortunately I feel that autism presenting in the way described in the article is simply too "loose" of a set of symptoms to have a formal diagnostic criterion which doesn't create a great number of false positives. Perhaps better time would be spent promoting awareness of the issue, as well as finding ways to thrive with a neuro-atypical brain (this is kind of in line with the article's message).
achenatx 7y ago
This article was incredibly interesting as I probably have this. My wife has said that Im a bit odd and probably on the spectrum. I make eye contact (though my wife says I often dont). If I stare into someones eyes it makes me feel like Im falling and it makes it hard for me to think. I can be very social but it is exhausting for me. My coping strategies to reduce stress mainly revolve around reducing commitments and things to track. 1) I dont keep any friends, my wife manages all social engagements, including with my friends. The problem with friends is they require commitments and I have no capability to meet them consistently. 2) I rarely read email, listen to voice messages, read slack messages, or read/open mail. For whatever reason I get very stressed reading email and listening to voice messages. This is quite frustrating to people around me but they have accepted it. When my wife met me I had months of unopened mail. I would typically pay each bill once every 3 months. I have about 6000 unread messages between 3 email accounts. When I go on vacation and come back I delete all my email. I havent listened to a voice message for a few years, though they are accumulating. I have adopted a philosophy that just because someone tries to contact me, that it does not create an obligation for me to respond. 3) I make as few commitments as possible. I want to help people but I will only do it in the moment. I make no promises about future ability to take on tasks. I tend to work on only one thing at a time so I dont have to worry about accidentally forgetting about something that is not what Im focused on. I have whatever work project Im working on, whatever home project Im working on, and then I attend meetings where I participate but dont take any action items unless they are related to my project. Ill often times buy some stuff for a project, my wife will put the items away, and Ill totally forget that I needed to do that project until I accidentally find the stuff in a cabinet. 4) I live from my calendar, but I still miss about 80% of non routine appointments. If I have a non routine appointment I pretty much have to think about it all day to avoid missing it so I try to schedule them in the morning to reduce the amount of time I have to worry about them. 5) people have bad dreams about showing up to a class not knowing about a test or final. I had this happen multiple times in school, including a class that I failed because I thought I dropped it (I was able to get it changed to incomplete so it didnt impact my GPA). 6) Most recently I have had a lot of stress worrying about properties that I might own that I have forgotten about, so over the last few years I have been selling all my real estate. 7) at work I have no capability to hold people accountable for more than one or two things. I have adopted a strategy of only hiring people that I dont have to micromanage. Over time the people I can work with demonstrate that we can make an agreement to get certain things done and I can rely on them to do it. I minimize the number of things that I have to track. On the plus side I stay focused on the top priorities and dont sweat the small stuff. 8) I have accepted how I am. Every strength is a weakness and vice versa. I apparently have very high self esteem so have never let it bother me that I am so incompetent in this area. Every time I miss an appointment/commitment, it reminds me to make less commitments.

94 points by anotherevan 7y ago

Found the discourse about Executive Function in this article very interesting. I want to understand this further.

Executive Functioning seems to be the key "worker bee" trait that is valued in school and the workplace. To be honest, in a different society (one that isn't focused on on-line communication, extreme productivity, and always on connections), executive functioning becomes a much less valued trait.

cheesymuffin 7y ago
Luddism is quite the meme lately. Hope it dies soon.
- officemonkey 7y ago
  Then get better at serving the entire spectrum, not just the profitable parts.
- CuriouslyC 7y ago
  Progress (in a lot of areas) hasn't been making people happier. In fact, despite our material success, we appear to be less happy than our predecessors. What you're witnessing isn't fear of change, it's people questioning the idea that "progress" is necessarily good.
  - badpun 7y ago
    > In fact, despite our material success, we appear to be less happy than our predecessors. Which predecessors? We can't really tell how a medieval peasant felt, as they didn't leave any articulate accounts. The accounts left later are generally non-representative, as people who left them were privileged (they were not illiterate). As for the more modern times, not more than 100 years ago alcoholism (strongly correlated with depression) was so rampant that the US banned alcohol sales altogether.
    - CuriouslyC 7y ago
      Specifically, I've seen data for post-WW2 America (at least until mid 70s) being much happier than current.
      - badpun 7y ago
        1. That was a period of super-high growth. Seeing positive change is one's life is one of the greatest contributors to happiness (one easy way to tap into this mechanism would be to have a terrible war that destroys everything, and then just have get their lives on track again). 2. Culture changed. In the past, people were told by society to not complain about their mental state, whereas now people are opened up almost to the point of being exhibitionistic. So, you cannot really compare reports from 50 years ago with today's numbers.
windlep 7y ago
I don't believe the "worker bee" trait you mention has much correlation with executive functioning. The way I've heard/seen it described in ADHD research is more that without executive functioning, putting together events in the past, applying them to the present, with a thought to the future outcome is the main issue. When your executive functioning is poor, your decision making is severely impacted because the ability to chain together past experiences with the current situation to chart a good outcome fails to come together. So if you wanted to make up a situation in the past that isn't a 'school or workplace', imagine someone on the hunt, failing to correctly interpret signs of a dangerous animal nearby and take appropriate precautions, and therefore dies. That would be a failure of good executive function. The traits identified in ADHD materials like these (below) are effectively a different way of phrasing the same outcome but those with ADHD may be lacking more in one of these distinct areas: https://www.understood.org/en/learning-attention-issues/child-learning-disabilities/executive-functioning-issues/3-areas-of-executive-function https://www.understood.org/en/learning-attention-issues/chil...
earenndil 7y ago
> To be honest, in a different society (one that isn't focused on on-line communication, extreme productivity, and always on connections), executive functioning becomes a much less valued trait I don't think so. I mean, I see what you're saying, that many of these demands on our attention are extraneous—bordering on useless. But, and I speak from personal experience as someone who struggles with executive function, that as a problem is disconnected from executive function. To me, what executive function means is that I have projects that I am interested in, that I would like to work on, that I would be happier for having completed, that I am unable to complete. That, like the subject of the article, I want to go and meet my friends for lunch, but have to cancel. Eradicating the 'productivity culture' might, as a side effect, reduce the level of executive function required, but they are not tied to one another. Having executive function means being able to do the things that I want to do, when I want to do them.
- mercer 7y ago
  > To me, what executive function means is that I have projects that I am interested in, that I would like to work on, that I would be happier for having completed, that I am unable to complete. What you are interested and what you like to work on (and how you should go about this) is in part informed by said 'productivity culture'. The same goes for meeting friends. I've lived in environments/cultures where the need for 'executive functioning' to pull this off was almost zero, because it'd just be part of the rhythm of life rather than some planned activity. Just to provide a bit of counterpoint; not saying you're all wrong.
  - officemonkey 7y ago
    Also, to add some more counterpoint... >I have projects that I am interested in, that I would like to work on, that I would be happier for having completed, that I am unable to complete. That sounds a lot like how depression treats me. I have these "impossible tasks" that sit there undone. And the "lazy procrastinator" in me (thanks, mom) does them at the last possible second. I think a lot of the "time management" self-help books out there is an honest effort at casting around at ANY way that can help a person become more productive. Whether it's values-based, or workflow-based, or something that just reduces the friction. Sadly, like most of the self-help genre, if you don't "become more productive," you're a bad person. Asking Neurodivergent people to compensate for executive functioning skills that don't come easy is bound to fail.
orbifold 7y ago
Yeah because if you struggle for survival in the Savanna people with low executive function are highly valued. If anything the modern world gives plenty of opportunity for disorganized slightly autistic people.
- jacobush 7y ago
  You jest, but it maybe isn't that simple. People with those traits often perform well under pressure when the stakes are high and the goals are clear. "Slacking" off later might have saved valuable energy - I don't know but reality is often much more complicated than what it looks like at first glance.

1990 7y ago

This is garbage. And it points directly to an agenda baked into the dual pronged attack by medicine and education, starting in the 1990's, with the introduction of Ritalin to combat the very first of the "diseases of social inconvenience" which we know as attention deficit disorder. It wasn't a real illness then, and it isn't now, but this push to "treat" the "disease" came at a time when public service announcements raised alarms on TV about how America was behind other countries in math and reading. So, here we are, medicating people who find boring things boring. And that's both public schools and modern medicine at work. Compulsory attendance, and doctors orders come together to make America competitive on the global stage. But it didn't stop with Ritalin and ADD. Like any program, there were advancements, and soon there was also ADHD. And notice that most of this is all a strategic approach to box obnoxious children into a corner, and make them behave in class? With each advancement, we shed light on other defects that were previously outshined by the more obvious pains in the proverbial ass. Once the busy bodies were calmed down, other problem children needed attention. And lo, autism became a spectrum. And with heightened deception, because now you could be seduced by the idea of the savant. Maybe it was a path to ...genius? So, take a hard look at these illnesses of mild ineptitude. Because there's another reality behind them. That reality is one where the social fabric of familial bonds has been torn to shreds, and replaced with clinical metrics. We used to have siblings, and mothers and fathers, and aunts and uncles, and cousins and nieces and nephews. People would put up with one another. But now there's nothing of the sort, and no one to rely on. With divorce and economics, it's lots of single mothers and families that can't afford to raise anything but a single only child. No more brothers and sisters, and mom and dad dehumanize each other with lawyers and custody battles, and a rotating cast of step relatives. So these diseases of inconvenience arise from poor socialization, and abstract social demands that having nothing to do with simply being a human. School is boring and sucks. And being raised by selfish assholes as an only child is its own nightmare. Maybe the United States has become slightly more competitive in STEM fields, but how? By plying kids with medication? By twisting the arm of any freak of nature that fails to comply with behavioral norms? I don't have a solution, because, in part, there are some real problems, but there is no illness or disease, and medication and stigma aren't the way forward. But without a doubt, this started in the 1990's and there's no end in sight.

Mirioron 7y ago

The behaviors described in the article remind me very strongly of ADHD. It makes sense, because the article talked about Executive Function and people have long suggested that a better name for ADHD would be Executive Function Deficit Disorder (EFDD). Furthermore, ADHD and ASD seem to commonly occur together: >studies show that between 30 and 50% of individuals with ASD manifest ADHD symptoms (particularly at pre-school age), and similarly, estimates suggest two-thirds of individuals with ADHD show features of ASD (Davis and Kollins, 2012). [0] Perhaps looking into treatments for ADHD could help? [0] https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4010758/ https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4010758/

bitwize 7y ago
ADHD is highly comorbid with autism. In some cases, an ADHD diagnosis may in fact be autistic symptoms that the diagnosing clinician failed to recognize as autism.
- zaphirplane 7y ago
  That is interesting my impression (tv/random articles ) was autism was very far away from the hyperactivity in ADHD
  - kosma 7y ago
    It's an unfortunate stereotype. ADHD has loose subtypes of "mostly hyperactive" and "mostly attention deficient"; and autism spectrum consists of introverts and extroverts just as much as the general population.
    - coroxout 7y ago
      Another stereotypically-opposite but actually possibly related pairing I find interesting: the OCD stereotype is "neat freaks" (not all that accurately, because hoarding is also compulsion-related, and many types of OCD operate on a different axis to neat/messy anyway), and the ADHD stereotype is messy and chaotic, but in a way they both centre around not being able to control what your mental runtime is spent on.

Justsignedup 7y ago

Still find it impossible to find resources where to get tested as an adult.

leoc 7y ago
IME psychiatrists who treat this kind of thing in children and adolescents usually seem to be willing to diagnose an adult as well.
monkeydreams 7y ago
Lordy - it took me ages. One psychiatrist went so far as to castigate me for my lack of spirituality (she was shocked when I said I didn't believe in god) and then went on to suggest that I had "repressed memories" of childhood neglect. While we are making shit up, why not make up an ASD diagnosis that actually fits the symptoms I'm reporting...
kosma 7y ago
I've been there; the irony is that the resource you're looking for is people. Find & join your local autistic community (the actually autistic people, not the moms or professionals); they know where to get a diagnosis. It's ironic because it's an autism thing to consult websites, books, etc., but not other people.
- nostrebored 7y ago
  Choosing from the group of people who have been diagnosed to see who they can recommend to examine you... you realize that this is the worst form of selection bias, right?
  - kosma 7y ago
    The reality of seeking diagnosis as an adult is that you get endlessly dismissed. I've been told I can't possibly be autistic because I can make eye contact, can talk, drive a car, or get to the appointment by myself. I've been misdiagnosed with and medicated for ADHD, personality disorders & OCD. The blatant incompetence of mental health professionals and complete lack of proper support and understanding drove me to the brink of suicide. So... yes, it's a bit of a selection bias, but the other option of searching at random - and getting hurt along the way - is just hell. False positives are rare and inconsequential; false negatives destroy lives. It's as simple as that.

kosma 7y ago

Side note: executive functioning is greatly impaired by stress, anxiety, lack of sleep, depression, etc. Those are very common in autistic people (due to lack of support and an unfriendly environment, not because of autism itself), making the symptoms much worse. Being unable to perform the basic planning & tasks causes even more stress & anxiety. It's a vicious cycle. There's still a huge blind spot in the way we approach autism, where we try to address the symptoms without having a critical look at the person's environment. (I'm autistic myself; and with proper support and environment I have very little executive functioning problems. Without them, I struggle with the most basic planning & tasks.)

nnq 7y ago
> executive functioning is greatly impaired by stress, anxiety, lack of sleep, depression, etc. This 1000 times over! Took me ages to realize that once you get "down" enough (either depressive or overwork-burnout or scared-to-death-by-social-anxieties), you can't think and plan right anymore so you just sink lower and lower down a spiral unless you get some outside help, stimuli and feedback. EF-malfunction is insidiuous because you just don't realize "how broken your mind really is", you just make bad decision after bad decision on all planes of life, health, finance, business, social etc. thinking you're one step away from "finding what works for you". But you can't successfully find "what works for you" with a broken-EF-brain, because you're mainly randomly sampling the possible space of behaviors and attitudes and your chance to find a 'right' set of such things is practically zero! Most things in the world don't 'work for you' and without planning and discipline you can't navigate your life and mind to what works!
- coroxout 7y ago
  This sounds disturbingly familiar. You try, but it ends badly repeatedly, sometimes unobtrusively, sometimes suddenly and catastrophically and in public, until the memories of those times plus fears of everyone's second-guessed reactions put you off doing anything; you go so long without succeeding at planning and discipline that even trying seems alien and scary; add the two together and you're well into "learned helplessness" territory. As you say, sampling the space of behaviours and getting apparently random, mostly negative results back and wondering why your mental map of cause/effect and effort/outcome makes no sense whatsoever. So... what does one do, when in broken-EF state for so long?

i4t 7y ago

naah, I wished. But I'm just lazy.

oeuviz 7y ago

What exactly makes people feel better when they know the source of a deficit, even though there is no improvment of handling it? Diagnosing someting would only make me feel better if I could treat for it.

DanBC 7y ago
You can ask for reasonable adjustments in the workplace. You now have a reason that explains the difficulties you've had in your life. You can understand why situations are difficult or overwhelming for you, and what you need to do to cope with those situations.
- oeuviz 7y ago
  Thanks, I guess I've been too ignorant to see this myself. Would be interesting though to learn how knowledge of the syndrome will help tidying up the bedroom.
barry-cotter 7y ago
1) “It’s not my fault, I have a disease.” 2) You can see how other people with similar problems deal with them. 3) You can talk to other people and they get it, they understand. For some people it’s like they suddenly find their people, like when someone who’s been reading HN for years goes to Silicon Valley and realises this is what it’s like to be surrounded by people who care about your interests or when you go from being the guy at your gym who’s trying to lift heavy to joining a powerlifting gym. Suddenly people understand.
- oeuviz 7y ago
  Thank you, sounds reasonable!
TeMPOraL 7y ago
One extra underappreciated benefit: you can tell the people saying you have a moral deficiency to shut up. (Sometimes not directly in this antagonistic way; just telling you have a particular diagnosed condition can make the annoying people in your life suddenly very compassionate.)

kareninoverseas 7y ago

I am probably somewhere on the spectrum. I am probably also going to avoid actively going out and getting myself diagnosed, since as this article suggests, public and professional perception is such that it is extremely difficult to get someone to diagnose you, and that once diagnosed, people might not take the diagnosis seriously anyway. I think that simply being aware that my brain runs on a different set of batteries--ones that make it easy for me to get hyperfocused on a task, and also ones that make me prone to overthinking--is one of the more useful outcomes of a formal diagnosis. Thankfully I can do that part by myself and with my close friends and family. Unfortunately I feel that autism presenting in the way described in the article is simply too "loose" of a set of symptoms to have a formal diagnostic criterion which doesn't create a great number of false positives. Perhaps better time would be spent promoting awareness of the issue, as well as finding ways to thrive with a neuro-atypical brain (this is kind of in line with the article's message).

achenatx 7y ago

This article was incredibly interesting as I probably have this. My wife has said that Im a bit odd and probably on the spectrum. I make eye contact (though my wife says I often dont). If I stare into someones eyes it makes me feel like Im falling and it makes it hard for me to think. I can be very social but it is exhausting for me. My coping strategies to reduce stress mainly revolve around reducing commitments and things to track. 1) I dont keep any friends, my wife manages all social engagements, including with my friends. The problem with friends is they require commitments and I have no capability to meet them consistently. 2) I rarely read email, listen to voice messages, read slack messages, or read/open mail. For whatever reason I get very stressed reading email and listening to voice messages. This is quite frustrating to people around me but they have accepted it. When my wife met me I had months of unopened mail. I would typically pay each bill once every 3 months. I have about 6000 unread messages between 3 email accounts. When I go on vacation and come back I delete all my email. I havent listened to a voice message for a few years, though they are accumulating. I have adopted a philosophy that just because someone tries to contact me, that it does not create an obligation for me to respond. 3) I make as few commitments as possible. I want to help people but I will only do it in the moment. I make no promises about future ability to take on tasks. I tend to work on only one thing at a time so I dont have to worry about accidentally forgetting about something that is not what Im focused on. I have whatever work project Im working on, whatever home project Im working on, and then I attend meetings where I participate but dont take any action items unless they are related to my project. Ill often times buy some stuff for a project, my wife will put the items away, and Ill totally forget that I needed to do that project until I accidentally find the stuff in a cabinet. 4) I live from my calendar, but I still miss about 80% of non routine appointments. If I have a non routine appointment I pretty much have to think about it all day to avoid missing it so I try to schedule them in the morning to reduce the amount of time I have to worry about them. 5) people have bad dreams about showing up to a class not knowing about a test or final. I had this happen multiple times in school, including a class that I failed because I thought I dropped it (I was able to get it changed to incomplete so it didnt impact my GPA). 6) Most recently I have had a lot of stress worrying about properties that I might own that I have forgotten about, so over the last few years I have been selling all my real estate. 7) at work I have no capability to hold people accountable for more than one or two things. I have adopted a strategy of only hiring people that I dont have to micromanage. Over time the people I can work with demonstrate that we can make an agreement to get certain things done and I can rely on them to do it. I minimize the number of things that I have to track. On the plus side I stay focused on the top priorities and dont sweat the small stuff. 8) I have accepted how I am. Every strength is a weakness and vice versa. I apparently have very high self esteem so have never let it bother me that I am so incompetent in this area. Every time I miss an appointment/commitment, it reminds me to make less commitments.