All the Ways It Doesn’t Matter…and the One Way That It Does.
August 28, 2018 10:33 AM Subscribe
Huh. 27. Still on the low end of "indicates some Autistic traits", but I guess this could explain a bundle of things about my childhood.
Like the author, I'm no longer suffering any distress, so, I mean, I'm good, but it lends context.
I'm glad her daughter has her to help guide her through what is likely to be a tough childhood.
posted by Imperfect at 10:57 AM on August 28, 2018 [4 favorites]
Like the author, I'm no longer suffering any distress, so, I mean, I'm good, but it lends context.
I'm glad her daughter has her to help guide her through what is likely to be a tough childhood.
posted by Imperfect at 10:57 AM on August 28, 2018 [4 favorites]
I just took the test and scored a 30, which isn't really surprising to me. A long time ago I was diagnosed with an unknown learning/developmental disability, and this was long before Asperger's was more commonly known.
So for a while they put me in with the developmental disability kids, which didn't work. They issued the standard Stanford-Binet IQ test and I tested so high it's embarrassing to even mention, so they put me in with the gifted/accelerated program, which didn't really work either.
And, yeah, does it matter for me at this point? I don't think it does.
If there was a magic pill that erased whatever Asperger's or autistic spectrum traits I have, would I take it?
No, probably not.
I have some strong intuition and feelings that a lot of the autistic spectrum things we're seeing might actually be an adaptation, evolution or reaction to our increasingly information dense modern life, and/or other environmental factors.
Think about it... a lot of autistic spectrum traits are sometimes incredibly useful in certain kinds of information dense environments or scenarios.
posted by loquacious at 11:13 AM on August 28, 2018 [18 favorites]
So for a while they put me in with the developmental disability kids, which didn't work. They issued the standard Stanford-Binet IQ test and I tested so high it's embarrassing to even mention, so they put me in with the gifted/accelerated program, which didn't really work either.
And, yeah, does it matter for me at this point? I don't think it does.
If there was a magic pill that erased whatever Asperger's or autistic spectrum traits I have, would I take it?
No, probably not.
I have some strong intuition and feelings that a lot of the autistic spectrum things we're seeing might actually be an adaptation, evolution or reaction to our increasingly information dense modern life, and/or other environmental factors.
Think about it... a lot of autistic spectrum traits are sometimes incredibly useful in certain kinds of information dense environments or scenarios.
posted by loquacious at 11:13 AM on August 28, 2018 [18 favorites]
I scored a 32--not really sure what to do with this information, to be honest.
posted by Automocar at 11:16 AM on August 28, 2018 [14 favorites]
posted by Automocar at 11:16 AM on August 28, 2018 [14 favorites]
I became obsessed with winning the class spelling bee. I memorized word after word, before school and after school. First I tackled the fourth grade list. Then the fifth. Then the sixth. Then the seventh. And I won. I won my class’s spelling bee. Then I won the school spelling bee. Then I won the all-city spelling bee.
It me. The kids, lead by Mike Christensen, used to call me "Approximately" because that was the word I won on.
God, this whole essay is one I could have written myself.
She's right that it doesn't much matter. You're still the stranger in a strange land no matter what the diagnosis. There is no treatment - you just did not come with the "fit in socially" trim package.
Although, once I was diagnosed getting access to therapy to learn things like making eye contact and such were hugely important. But, even with all of that, I'm still weird and people tend to dislike or distrust me because of it.
So there was that.
posted by Pogo_Fuzzybutt at 11:17 AM on August 28, 2018 [16 favorites]
It me. The kids, lead by Mike Christensen, used to call me "Approximately" because that was the word I won on.
God, this whole essay is one I could have written myself.
She's right that it doesn't much matter. You're still the stranger in a strange land no matter what the diagnosis. There is no treatment - you just did not come with the "fit in socially" trim package.
Although, once I was diagnosed getting access to therapy to learn things like making eye contact and such were hugely important. But, even with all of that, I'm still weird and people tend to dislike or distrust me because of it.
So there was that.
posted by Pogo_Fuzzybutt at 11:17 AM on August 28, 2018 [16 favorites]
I got a 30, but I know Younger Me would have gotten a higher score. This article resonated with me a lot.
One thing that stood out to me on the quiz is that more than a few of the questions also sound like ADHD traits, like "I frequently get so strongly absorbed in one thing that I lose sight of other things." The more I learn about the conditions I've been diagnosed with (anxiety, ADHD, depression), the more it seems like they're artificial labels for collections of traits which vary wildly from person to person. If you have X and Y, we call it ADHD; if you have Y and Z, we call it anxiety; but if you just have X, you don't get help because there's no diagnosis, and if you have X and Y and Z, we say you have 'ADHD and anxiety' rather than giving that group of traits some other label and coming up with some other way to conceptualize it.
I don't know if that squares with modern psychology or not, but when I said it to my therapist, he said I wasn't exactly wrong.
posted by showbiz_liz at 11:18 AM on August 28, 2018 [49 favorites]
One thing that stood out to me on the quiz is that more than a few of the questions also sound like ADHD traits, like "I frequently get so strongly absorbed in one thing that I lose sight of other things." The more I learn about the conditions I've been diagnosed with (anxiety, ADHD, depression), the more it seems like they're artificial labels for collections of traits which vary wildly from person to person. If you have X and Y, we call it ADHD; if you have Y and Z, we call it anxiety; but if you just have X, you don't get help because there's no diagnosis, and if you have X and Y and Z, we say you have 'ADHD and anxiety' rather than giving that group of traits some other label and coming up with some other way to conceptualize it.
I don't know if that squares with modern psychology or not, but when I said it to my therapist, he said I wasn't exactly wrong.
posted by showbiz_liz at 11:18 AM on August 28, 2018 [49 favorites]
It's interesting that this assessment doesn't have any of the more physical symptoms, like sensory processing issues. There's the one about not being able to follow multiple conversations, but that's it. I guess it's hard when the sensory processing issues could swing in multiple directions; some autistics are sensory-seeking and some are sensory-averse.
posted by tofu_crouton at 11:18 AM on August 28, 2018 [13 favorites]
posted by tofu_crouton at 11:18 AM on August 28, 2018 [13 favorites]
I got 39, but I think it's safe to assume it's in part because I have really low confidence in my social skills, not necessarily that a deficit actually exists. But maybe I'm just deluding myself :) Social things are not easy or pleasant for me, but people seem to like being around me. Of course, I work with software engineers and am one myself, so the social skills bar is low/different...
posted by potrzebie at 11:20 AM on August 28, 2018 [6 favorites]
posted by potrzebie at 11:20 AM on August 28, 2018 [6 favorites]
For quite a while, several years, probably, I've wondered if I might have a very mild form of autism. I scored 33 on the AQD, which doesn't surprise me a lot. I do well in most social situations, but also have to fake it a lot and for much of my childhood and teenage years, I wore a veneer of "sarcastic asshole" to cover up the fact that I was just not that popular. I had a few good friends, but was never the kid who could socialize with anyone. As an adult, I'm still not comfortable putting myself out there with people I don't know. I do it because I have to, but I'm never comfortable.
Honestly, though, at this point in my life a formal diagnosis wouldn't really change anything so...meh?
posted by asnider at 11:21 AM on August 28, 2018 [4 favorites]
Honestly, though, at this point in my life a formal diagnosis wouldn't really change anything so...meh?
posted by asnider at 11:21 AM on August 28, 2018 [4 favorites]
Me: My symptoms are mostly sensory, so I probably wont score too high on this...
*takes test*
Me: 42. HUH.
posted by Homo neanderthalensis at 11:27 AM on August 28, 2018 [5 favorites]
*takes test*
Me: 42. HUH.
posted by Homo neanderthalensis at 11:27 AM on August 28, 2018 [5 favorites]
29. From the looks of it, I am in the right place. My children have a lot of my same traits but are doing ok with school and friends so we are debating whether it’s necessary to pathologIze their personalities. I appreciate what the article’s author has to say on the subject.
posted by q*ben at 11:28 AM on August 28, 2018 [2 favorites]
posted by q*ben at 11:28 AM on August 28, 2018 [2 favorites]
32. No idea what to do with this information though.
posted by heatherlogan at 11:29 AM on August 28, 2018 [3 favorites]
posted by heatherlogan at 11:29 AM on August 28, 2018 [3 favorites]
I scored a 19. But I related to the thing about not brushing hair so hard, y'all - even today I find the whole thing about having to actually fuss over how you look to be such a total bore. In high school, many of my peers were playing around with makeup to the point that their parents were putting rules on them about it - but I was the kid whose mother was dragging her back inside before leaving for school and pleading "just a little blush, give yourself some color!"
Overall point being - this test, and the experience of being a "quirky" kid, may not be as neatly defined entirely within the scope of Autism. Maybe there's ADHD influencing it. Maybe a super-specific IQ. Or, maybe poverty kept you too hungry to think about playing "pretend" games when you were a kid, and it had nothing to do with you.
The one way it does matter is the way that also matters to kids without autism but who are quirky for other reasons - we all deserve to belong, we all deserve that compassion. We all need to teach our kids to treat others with that kind of compassion regardless why they need to practice it.
posted by EmpressCallipygos at 11:29 AM on August 28, 2018 [19 favorites]
Overall point being - this test, and the experience of being a "quirky" kid, may not be as neatly defined entirely within the scope of Autism. Maybe there's ADHD influencing it. Maybe a super-specific IQ. Or, maybe poverty kept you too hungry to think about playing "pretend" games when you were a kid, and it had nothing to do with you.
The one way it does matter is the way that also matters to kids without autism but who are quirky for other reasons - we all deserve to belong, we all deserve that compassion. We all need to teach our kids to treat others with that kind of compassion regardless why they need to practice it.
posted by EmpressCallipygos at 11:29 AM on August 28, 2018 [19 favorites]
38. Meh.
It might have made a huge difference when I was a child, as everyone is saying, but now? I've got my strategies, decent job, and am often alone but almost never lonely. I'm good.
Plus, of course, these self-diagnostic tests don't actually prove anything.
posted by YAMWAK at 11:32 AM on August 28, 2018 [6 favorites]
It might have made a huge difference when I was a child, as everyone is saying, but now? I've got my strategies, decent job, and am often alone but almost never lonely. I'm good.
Plus, of course, these self-diagnostic tests don't actually prove anything.
posted by YAMWAK at 11:32 AM on August 28, 2018 [6 favorites]
Just compulsively fav’d all the comments on this FPP because I can’t run around hugging everyone. And frankly, given my social proclivities, this is much easier and preferable to do.
posted by q*ben at 11:33 AM on August 28, 2018 [17 favorites]
posted by q*ben at 11:33 AM on August 28, 2018 [17 favorites]
I think the benefit of a diagnosis is probably related to expectation of what can be controlled. I've been told all my life to "just be different," as if I am choosing paralysis inducing social anxiety or sudden onset mutism when asked a direct question. I would hope that a formal diagnosis would go a long way toward helping my friends and family understand that some things are just wired in. Fingers crossed anyway. Who knows?
{35, by the way}
posted by Eumachia L F at 11:35 AM on August 28, 2018 [14 favorites]
{35, by the way}
posted by Eumachia L F at 11:35 AM on August 28, 2018 [14 favorites]
39, not that we're trying to out-autist each other here. But like the author I've come to the realization that I'm likely on the spectrum fairly late in life. And like her and other commenters, I'm not sure what good a formal diagnosis would do now. What coping mechanisms I have were learned the hard way.
What I am very glad for, however, is that children on the spectrum today can get the help they need to make sense of and navigate the social world around them.
posted by The Nutmeg of Consolation at 11:35 AM on August 28, 2018 [13 favorites]
What I am very glad for, however, is that children on the spectrum today can get the help they need to make sense of and navigate the social world around them.
posted by The Nutmeg of Consolation at 11:35 AM on August 28, 2018 [13 favorites]
I still don't brush my hair. Is that bad?
[37, for the record, not that I trust this test much]
posted by quaking fajita at 11:35 AM on August 28, 2018 [3 favorites]
[37, for the record, not that I trust this test much]
posted by quaking fajita at 11:35 AM on August 28, 2018 [3 favorites]
Individuals moved from group to group intermittently. I wondered how they decided to do that.
This me. But yeah, I have some quirks and not others, so what does that even mean? Plus, I stopped reading after realizing that she found a husband.
posted by Melismata at 11:36 AM on August 28, 2018 [5 favorites]
This me. But yeah, I have some quirks and not others, so what does that even mean? Plus, I stopped reading after realizing that she found a husband.
posted by Melismata at 11:36 AM on August 28, 2018 [5 favorites]
28. Doesn't mean much. I was alone growing up because no one wanted to be seen with the deformed kid. I adapted to a solitary lifestyle, by necessity. Pretty sure I'm not autistic, or even Aspie.
posted by SPrintF at 11:37 AM on August 28, 2018 [6 favorites]
posted by SPrintF at 11:37 AM on August 28, 2018 [6 favorites]
I scored a 42 on the test. This is my shocked face - which I point out because it's the same as every other face I make. I agree with the author and others here that there isn't much I will do with the information or would change if I could. I'm weird and don't fit in but the things that come naturally to me are in high demand and make me a new kind of important or desirable or whatever.
One thing that these articles do change is knowing that I'm not alone. Being the weird kid off to the side growing up and later the guy who doesn't fit in at the bar, party or work event can make a person feel very alien. Identifying exactly with someone else is very powerful.
I learned that my weirdness might have a name in couples counselling in my late 30s when the counselor said to my wife "well when you're talking to someone with Asperger's you have to..." as if it was just that obvious and known.
posted by Clinging to the Wreckage at 11:37 AM on August 28, 2018 [12 favorites]
One thing that these articles do change is knowing that I'm not alone. Being the weird kid off to the side growing up and later the guy who doesn't fit in at the bar, party or work event can make a person feel very alien. Identifying exactly with someone else is very powerful.
I learned that my weirdness might have a name in couples counselling in my late 30s when the counselor said to my wife "well when you're talking to someone with Asperger's you have to..." as if it was just that obvious and known.
posted by Clinging to the Wreckage at 11:37 AM on August 28, 2018 [12 favorites]
28 over here, which I don't find especially surprising. That said, I do kind of feel like the broadening of autism into a wide spectrum like this runs the risk of not-so-subtly pathologizing the condition of being a introvert with nerd affinities. But I will admit IANAPsychologist and am not really up on the particular issues surrounding autism/Aspergers.
posted by Strange Interlude at 11:37 AM on August 28, 2018 [6 favorites]
posted by Strange Interlude at 11:37 AM on August 28, 2018 [6 favorites]
I scored 33 but I'm sure that I would have scored higher as a young adult; thirty years of adulthood have smoothed out the edges a little or at least taught me some workarounds for my limitations.
posted by octothorpe at 11:45 AM on August 28, 2018 [12 favorites]
posted by octothorpe at 11:45 AM on August 28, 2018 [12 favorites]
I got 39, but I had a lot of problems with ambiguities in the phrasing of the test questions. In #28, "whole picture" and "small details" are extremely vague phrases. Is a human life a "whole picture"? From a cosmic viewpoint, it's barely a "small detail." I was also thrown by #9, "I am fascinated by dates," because I have no idea whether "date" refers to "the day on which an event occurs," "a romantic meeting," or "a type of fruit." The mechanics of being fascinated by these things would be very different.
posted by Faint of Butt at 11:45 AM on August 28, 2018 [27 favorites]
posted by Faint of Butt at 11:45 AM on August 28, 2018 [27 favorites]
33. I could have MsEld (or someone else at her office) eval me for real and see how this correlates (or doesn't) with the test we're all fawning over... though I don't know what would really come of that testing/result.
I forget how her legit IQ testing certification practicing back in her master's days result for me correlated with online versions of the same but, honestly, the fact that she practiced ALL the questions (including those that would be skipped over based upon my age/baseline intelligence) and the fact that the duration that made the testing run (6 hours? It was a long time) led to me being about 4 or 5 beers deep by the time I started getting things wrong/not completing items.
posted by RolandOfEld at 11:48 AM on August 28, 2018 [2 favorites]
I forget how her legit IQ testing certification practicing back in her master's days result for me correlated with online versions of the same but, honestly, the fact that she practiced ALL the questions (including those that would be skipped over based upon my age/baseline intelligence) and the fact that the duration that made the testing run (6 hours? It was a long time) led to me being about 4 or 5 beers deep by the time I started getting things wrong/not completing items.
posted by RolandOfEld at 11:48 AM on August 28, 2018 [2 favorites]
A few people, including Mel Baggs at this link, have suggested "cousins" or "autistic cousins" as a label for people with autism-ish traits and other diagnoses. I'm consistently in the high 20's on the AQ test, mostly because of ADD, and I've found using cousins in this sense super helpful.
posted by bagel at 11:48 AM on August 28, 2018 [11 favorites]
posted by bagel at 11:48 AM on August 28, 2018 [11 favorites]
I got 39, but I had a lot of problems with ambiguities in the phrasing of the test questions.
Preach. I managed to make a fairly defensible rocket ship picture out of the cardboard tiles that were supposed to be arranged into a house in the abovementioned IQ test, at least as I recall things. So, I guess what I'm saying is that even the legit tests administered by pros fall prey to this in various and sundry ways as well.
posted by RolandOfEld at 11:50 AM on August 28, 2018 [5 favorites]
Preach. I managed to make a fairly defensible rocket ship picture out of the cardboard tiles that were supposed to be arranged into a house in the abovementioned IQ test, at least as I recall things. So, I guess what I'm saying is that even the legit tests administered by pros fall prey to this in various and sundry ways as well.
posted by RolandOfEld at 11:50 AM on August 28, 2018 [5 favorites]
31. How about that. I wonder if it'd be higher if maths wasn't thought to be so important in the diagnosis? I'm *terrible* at maths, my forte is art and words.
posted by HypotheticalWoman at 11:55 AM on August 28, 2018 [3 favorites]
posted by HypotheticalWoman at 11:55 AM on August 28, 2018 [3 favorites]
38. And I was pulling punches so it wouldn't score as high.
And yet, some of the essay just completely didn't grok, like the hair brushing thing. I'm very, very conscious of my appearance, even when I completely get fashion wrong. Maybe that's just vanity.
posted by notsnot at 11:59 AM on August 28, 2018 [4 favorites]
And yet, some of the essay just completely didn't grok, like the hair brushing thing. I'm very, very conscious of my appearance, even when I completely get fashion wrong. Maybe that's just vanity.
posted by notsnot at 11:59 AM on August 28, 2018 [4 favorites]
I got 38, also pulling punches. I was definitely different than the author of the essay, but clearly it's not specific actions but general behaviors that point that direction. I've been seeing a lot of behaviors in my 7 year old son that remind me of myself at that age and my wife, a child development major, has been thinking he might be on the spectrum. I definitely am somewhere on the ADD/Anxiety/Autism Spectrum train, and I guess I'll put that into the mental bucket of "I should probably talk to someone about this" things that I continue to ignore though I know I shouldn't.
posted by sleeping bear at 12:03 PM on August 28, 2018 [3 favorites]
posted by sleeping bear at 12:03 PM on August 28, 2018 [3 favorites]
Some of these are targeted at children. A lot of kids with sensory issues are disturbed or physically hurt by a parent dragging a brush through their hair. That's my guess as to why it's on the list.
posted by tofu_crouton at 12:05 PM on August 28, 2018 [2 favorites]
posted by tofu_crouton at 12:05 PM on August 28, 2018 [2 favorites]
And yet, some of the essay just completely didn't grok
There are so many different ways to be autistic, there's a saying: if you've met one person with autism... you've met one person with autism.
posted by a snickering nuthatch at 12:06 PM on August 28, 2018 [7 favorites]
There are so many different ways to be autistic, there's a saying: if you've met one person with autism... you've met one person with autism.
posted by a snickering nuthatch at 12:06 PM on August 28, 2018 [7 favorites]
" I lost the regional bee in the first round because I didn’t capitalize the word “Christian”."
posted by mit5urugi at 12:09 PM on August 28, 2018 [2 favorites]
posted by mit5urugi at 12:09 PM on August 28, 2018 [2 favorites]
26. I'm kind of ASD-adjacent, but I don't know if it's something I was born with or if it's because my anxiety has interfered with my social development.
posted by airmail at 12:09 PM on August 28, 2018 [1 favorite]
posted by airmail at 12:09 PM on August 28, 2018 [1 favorite]
I rated a 27. I never did well in school. I was given an IQ test in 4th grade. They were trying to figure out what was wrong with me. They told me I had a very high IQ, though they didn't tell me what is was. (This was in the sixties.) Everyone said you're so intelligent why don't you do well in school? You need to try harder!
I've diagnosed with major depression, OCD and ADHD. I ended up getting a masters in computer science.
I've often wondered about if I had Asperger's. However I think schizoid personality disorder fits me better. I read the definition and I see myself.
posted by ThreeCatsBob at 12:11 PM on August 28, 2018
I've diagnosed with major depression, OCD and ADHD. I ended up getting a masters in computer science.
I've often wondered about if I had Asperger's. However I think schizoid personality disorder fits me better. I read the definition and I see myself.
posted by ThreeCatsBob at 12:11 PM on August 28, 2018
That feeling that you're somehow crap at life and it's your own fault … been there.
At least it sounds like the author's parents didn't know about autism. A kid I'm close to has parents who deny he's autistic. Never mind that he had intensive infant therapy or that he is taunted mercilessly at school: his parents won't tell him or allow him to access any of the (frankly amazing) resources the local school board has to help so that they won't be parents of "that weird kid". I worry for him: he's at the age where he's in the depths of the South Park-inspired middle school ironic racism/offensiveness thing, and the irony bit just washes over him. He comes out with some spectacularly offensive things without realising it, and gets angry if you call him out on it. "I'll get rich and what you say you won't matter" is his current defensive ploy.
posted by A Friend of Dug [sock] at 12:16 PM on August 28, 2018 [4 favorites]
At least it sounds like the author's parents didn't know about autism. A kid I'm close to has parents who deny he's autistic. Never mind that he had intensive infant therapy or that he is taunted mercilessly at school: his parents won't tell him or allow him to access any of the (frankly amazing) resources the local school board has to help so that they won't be parents of "that weird kid". I worry for him: he's at the age where he's in the depths of the South Park-inspired middle school ironic racism/offensiveness thing, and the irony bit just washes over him. He comes out with some spectacularly offensive things without realising it, and gets angry if you call him out on it. "I'll get rich and what you say you won't matter" is his current defensive ploy.
posted by A Friend of Dug [sock] at 12:16 PM on August 28, 2018 [4 favorites]
31. I do wonder, though, if compulsively reading fiction throughout my life (a book a week for most of my adult life) might have given me a better sense of why people do the things they do; after all, isn't there a study out there somewhere that says that fiction teaches empathy?
I identify with being the odd one out so much; somehow I've never managed to figure out how to be easy when socializing with people, and for a long time I struggled with the fact that I wasn't anyone's favorite person. Everyone had a best friend, it seemed, but me. I got invited to group events, but never to hang out solo. I've also always preferred being alone. My husband is on a work trip this week, and while I miss him, it's also relaxing to have the apartment to myself. He's an introvert too, so it's not like I don't get quiet time when he's around, but just having a person around, even the person I'm most comfortable with, is just that tiny bit more effort than being alone.
Also, I hated brushing my hair so much that when I grew up, I cut it all off. I've had a pixie cut so short that I can just wet it and go since I was 18 and will never go back to having long hair.
posted by bridgebury at 12:19 PM on August 28, 2018 [8 favorites]
I identify with being the odd one out so much; somehow I've never managed to figure out how to be easy when socializing with people, and for a long time I struggled with the fact that I wasn't anyone's favorite person. Everyone had a best friend, it seemed, but me. I got invited to group events, but never to hang out solo. I've also always preferred being alone. My husband is on a work trip this week, and while I miss him, it's also relaxing to have the apartment to myself. He's an introvert too, so it's not like I don't get quiet time when he's around, but just having a person around, even the person I'm most comfortable with, is just that tiny bit more effort than being alone.
Also, I hated brushing my hair so much that when I grew up, I cut it all off. I've had a pixie cut so short that I can just wet it and go since I was 18 and will never go back to having long hair.
posted by bridgebury at 12:19 PM on August 28, 2018 [8 favorites]
36.
For me, the scariest three words in the language are when colleagues say "just call them".
posted by scruss at 12:25 PM on August 28, 2018 [41 favorites]
For me, the scariest three words in the language are when colleagues say "just call them".
posted by scruss at 12:25 PM on August 28, 2018 [41 favorites]
32 just now. Am sure this is a lower score than when I took this some years ago, and I think the reason is I've had a job for the last 10 years where I really need good people skills and I've been practising them, so all the ones about finding interactions difficult don't apply to me any more.
Not sure what to make of that other than it does explain a difficult and somewhat lonely childhood. I certainly relate to the early part of the article.
posted by i_am_joe's_spleen at 12:29 PM on August 28, 2018 [2 favorites]
Not sure what to make of that other than it does explain a difficult and somewhat lonely childhood. I certainly relate to the early part of the article.
posted by i_am_joe's_spleen at 12:29 PM on August 28, 2018 [2 favorites]
I don't know if that squares with modern psychology or not, but when I said it to my therapist, he said I wasn't exactly wrong.
There definitely are people who look at things through the lense of just a bunch of correlated symptoms, e.g. here. I don't know that it's widely accepted but it's seen as a respectable way of looking at things as far as I can tell.
posted by vogon_poet at 12:33 PM on August 28, 2018 [1 favorite]
There definitely are people who look at things through the lense of just a bunch of correlated symptoms, e.g. here. I don't know that it's widely accepted but it's seen as a respectable way of looking at things as far as I can tell.
posted by vogon_poet at 12:33 PM on August 28, 2018 [1 favorite]
30. Pulling punches, and not enough sensory stuff on here. My sound sensitivity especially nearing the end of the day still causes problems, and my misophonia when people are eating near me has actually ended relationships. Still, no diagnosis. ::shruggo::
posted by lazaruslong at 12:33 PM on August 28, 2018 [2 favorites]
posted by lazaruslong at 12:33 PM on August 28, 2018 [2 favorites]
I definitely have sensory issues. Sounds don't bother me but bright lights do and unexpected touching by another person, even like a hand on my shoulder, can cause my entire brain to short-circuit for a second or so.
posted by octothorpe at 12:37 PM on August 28, 2018
posted by octothorpe at 12:37 PM on August 28, 2018
Am sure this is a lower score than when I took this some years ago, and I think the reason is I've had a job for the last 10 years where I really need good people skills and I've been practising them, so all the ones about finding interactions difficult don't apply to me any more.
29, and this is exactly my thought as well--many of these things I've only improved/better understood through the crucible of years of office work.
and there's even a lot of much more recent change in that respect -- I'm a project manager now who routinely has to talk to clients and strangers without too much trouble, but my first job at this company was a proofreader, and when I was offered a change in career to what eventually brought me into management, I had a panic attack in the stairwell at the thought of having to talk to people at work
but also I have never thought of myself in terms of the autism spectrum because so many of the typical markers that people talk about -- lack of empathy, inability to read social cues -- don't fit me at all. I usually end up talking more about introversion and being drained by social interaction, more than finding it difficult to understand.
like this, from the article, resonates for me with my childhood experience:
I sat up in there alone and watched the kids from above.
but it was less that I felt like I couldn't interact with those kids, but more that I never wanted to--I longed to get back to taking another shot at that latest boss fight in Final Fantasy Tactics or writing another chapter of Diablo fanfiction.
posted by Kybard at 12:38 PM on August 28, 2018 [4 favorites]
29, and this is exactly my thought as well--many of these things I've only improved/better understood through the crucible of years of office work.
and there's even a lot of much more recent change in that respect -- I'm a project manager now who routinely has to talk to clients and strangers without too much trouble, but my first job at this company was a proofreader, and when I was offered a change in career to what eventually brought me into management, I had a panic attack in the stairwell at the thought of having to talk to people at work
but also I have never thought of myself in terms of the autism spectrum because so many of the typical markers that people talk about -- lack of empathy, inability to read social cues -- don't fit me at all. I usually end up talking more about introversion and being drained by social interaction, more than finding it difficult to understand.
like this, from the article, resonates for me with my childhood experience:
I sat up in there alone and watched the kids from above.
but it was less that I felt like I couldn't interact with those kids, but more that I never wanted to--I longed to get back to taking another shot at that latest boss fight in Final Fantasy Tactics or writing another chapter of Diablo fanfiction.
posted by Kybard at 12:38 PM on August 28, 2018 [4 favorites]
35, holding back on the more ambiguous questions, and it would have been higher if it had more sensory stuff. (I finally splurged on a weighted blanket for myself and it came in today. I love it so much.) I brush my hair as little as possible. I didn’t know that was a thing.
But, meh. I’ve known for a very long time that I don’t interact with the world in a “normal” way and I love that about myself. It’s a big part of who I am as a person and too many people think autism is a flaw that needs to be fixed or eradicated (looking at you Autism Speaks). So my result doesn’t really change anything for me.
posted by Ruki at 12:54 PM on August 28, 2018 [1 favorite]
But, meh. I’ve known for a very long time that I don’t interact with the world in a “normal” way and I love that about myself. It’s a big part of who I am as a person and too many people think autism is a flaw that needs to be fixed or eradicated (looking at you Autism Speaks). So my result doesn’t really change anything for me.
posted by Ruki at 12:54 PM on August 28, 2018 [1 favorite]
Scored a 37. I remember vividly when I was a teen and first learning that it was even a possibility. I brought it up with my mom and her response was an instant dismissive "pfff, you're not autistic". I've always wondered, though, and this really would explain a lot about me and my predilections.
posted by wanderingmind at 1:02 PM on August 28, 2018 [1 favorite]
posted by wanderingmind at 1:02 PM on August 28, 2018 [1 favorite]
Yeah, I scored 38, and that's without them asking about sensory stuff, which is where I really struggle. But I don't think a single person who knows me would think that I was autistic. I don't know if I'm just a very autism-adjacent non-autistic person or if I do a really good job masking it.
And honestly, I'm going to file some of my stuff under "personality quirks." I like finding patterns in numbers. When I see a pattern in a number or bunch of numbers, I get a warm, fuzzy feeling. I know that's a little unusual, but it's not interfering with my life, and it's not hurting anyone, so who cares? I can't figure out how labeling myself autistic would be more helpful than thinking of myself as a person who likes patterns and has trouble figuring out when it's my turn to talk on the telephone.
posted by ArbitraryAndCapricious at 1:02 PM on August 28, 2018 [7 favorites]
And honestly, I'm going to file some of my stuff under "personality quirks." I like finding patterns in numbers. When I see a pattern in a number or bunch of numbers, I get a warm, fuzzy feeling. I know that's a little unusual, but it's not interfering with my life, and it's not hurting anyone, so who cares? I can't figure out how labeling myself autistic would be more helpful than thinking of myself as a person who likes patterns and has trouble figuring out when it's my turn to talk on the telephone.
posted by ArbitraryAndCapricious at 1:02 PM on August 28, 2018 [7 favorites]
Individuals moved from group to group intermittently. I wondered how they decided to do that.
...this is still me at parties.
I scored 30. Huh.
posted by esoterrica at 1:09 PM on August 28, 2018 [1 favorite]
...this is still me at parties.
I scored 30. Huh.
posted by esoterrica at 1:09 PM on August 28, 2018 [1 favorite]
She has no real friends at school. She complains that the kids don’t “get” her and she doesn’t “get” them. So she cries. A lot. She loves little kids and babies because they love her back. She adores animals, especially baby animals, for the same reasons. She prefers to talk to adults rather than kids, because they are less likely to make fun of her and, if I let her, she would spend all of her waking hours on the computer because computers follow rules and don’t reject her for being “weird”.
I identify A LOT with the experiences of the author and her daughter. I too was one of those kids who isn't accepted by the other kids for unknown reasons and thus spent a lot of time bored & alone and trying desperately to amuse myself with whatever information I could scrape out of the environment around me. Is this what makes someone autistic though? I got a pretty low score on that AQ test but a lot of my answers were more like "It depends, sometimes extremely yes, but in other cases extremely no." I don't know that that's getting measured.
posted by bleep at 1:12 PM on August 28, 2018 [5 favorites]
I identify A LOT with the experiences of the author and her daughter. I too was one of those kids who isn't accepted by the other kids for unknown reasons and thus spent a lot of time bored & alone and trying desperately to amuse myself with whatever information I could scrape out of the environment around me. Is this what makes someone autistic though? I got a pretty low score on that AQ test but a lot of my answers were more like "It depends, sometimes extremely yes, but in other cases extremely no." I don't know that that's getting measured.
posted by bleep at 1:12 PM on August 28, 2018 [5 favorites]
31. How about that. I wonder if it'd be higher if maths wasn't thought to be so important in the diagnosis? I'm *terrible* at maths, my forte is art and words.
Yeah, I'm a bit put off by the focus on numbers specifically since art to is largely codified symbolic pattern reading. A focus on art and words can also be read back out into the world and personal interactions with some success at an impersonal level making some of the questions on judging interaction perhaps rate a little different as well. I tend to think there is still quite a way to go in the understanding of neurodivergent and neurotypical perspectives since there seems to be a lot that isn't captured well at all.
posted by gusottertrout at 1:12 PM on August 28, 2018 [3 favorites]
Yeah, I'm a bit put off by the focus on numbers specifically since art to is largely codified symbolic pattern reading. A focus on art and words can also be read back out into the world and personal interactions with some success at an impersonal level making some of the questions on judging interaction perhaps rate a little different as well. I tend to think there is still quite a way to go in the understanding of neurodivergent and neurotypical perspectives since there seems to be a lot that isn't captured well at all.
posted by gusottertrout at 1:12 PM on August 28, 2018 [3 favorites]
11, for me.
WHICH IS CRAZY. I'm ADHD, strongly related to the whole story and experience of childhood, so much with the not brushing my hair, with not understanding how to be liked by the other kids... but, I'm a pretty extroverted and social adult. I just got along better with adults when I was a child, than with other children. I accuse my parents.
I get why she thinks it wouldn't matter much to get a clinical diagnosis, but I can't help but think about the article and thread from the other day, seeing how much this author is buying into the tropes of autism. And yet, she's really talking about her own internal experience, retrospectively cast with the ASD diagnosis. I guess it's almost like the experience of being autistic isn't monolithic and unitary, but much like the experience of being a neurotypical human, has many dimensions and permutations.
I guess we're all just special fucking snowflakes, aren't we? We sure as hell are.
posted by Made of Star Stuff at 1:17 PM on August 28, 2018 [6 favorites]
WHICH IS CRAZY. I'm ADHD, strongly related to the whole story and experience of childhood, so much with the not brushing my hair, with not understanding how to be liked by the other kids... but, I'm a pretty extroverted and social adult. I just got along better with adults when I was a child, than with other children. I accuse my parents.
I get why she thinks it wouldn't matter much to get a clinical diagnosis, but I can't help but think about the article and thread from the other day, seeing how much this author is buying into the tropes of autism. And yet, she's really talking about her own internal experience, retrospectively cast with the ASD diagnosis. I guess it's almost like the experience of being autistic isn't monolithic and unitary, but much like the experience of being a neurotypical human, has many dimensions and permutations.
I guess we're all just special fucking snowflakes, aren't we? We sure as hell are.
posted by Made of Star Stuff at 1:17 PM on August 28, 2018 [6 favorites]
25. Right down the middle.
I didn't notice a question about brushing hair.
Needless to say, a number of the traits that I did present on are probably ones shared with attention deficit.
posted by TheWhiteSkull at 1:18 PM on August 28, 2018 [1 favorite]
I didn't notice a question about brushing hair.
Needless to say, a number of the traits that I did present on are probably ones shared with attention deficit.
posted by TheWhiteSkull at 1:18 PM on August 28, 2018 [1 favorite]
"Reading for me was like doing a cut-and-paste into my brain" resonated with me. And I always hated spelling bees because they wouldn't let me write the word down first and look at it. Typos and misspelled words tend to leap off the page/screen and assault my sensibilities, but I can easily mangle the spelling of a simple word if I just hear the word and try to recite the letters.
45 on the test, FWIW.
posted by HillbillyInBC at 1:23 PM on August 28, 2018 [3 favorites]
45 on the test, FWIW.
posted by HillbillyInBC at 1:23 PM on August 28, 2018 [3 favorites]
Metafilter: I tested so high it's embarrassing to even mention
posted by Freelance Demiurge at 1:26 PM on August 28, 2018 [13 favorites]
posted by Freelance Demiurge at 1:26 PM on August 28, 2018 [13 favorites]
I didn't notice a question about brushing hair.
There WASN'T a question about brushing hair on mine (and I went back and ctrl-f'd hair and brush to make sure). There must be a random assortment of questions.
I got a 12, which feels very accurate.
posted by kate blank at 1:30 PM on August 28, 2018
There WASN'T a question about brushing hair on mine (and I went back and ctrl-f'd hair and brush to make sure). There must be a random assortment of questions.
I got a 12, which feels very accurate.
posted by kate blank at 1:30 PM on August 28, 2018
The reference to brushing hair is from the article, not the test.
posted by quaking fajita at 1:33 PM on August 28, 2018 [5 favorites]
posted by quaking fajita at 1:33 PM on August 28, 2018 [5 favorites]
Sounds don't bother me but bright lights do and unexpected touching by another person, even like a hand on my shoulder, can cause my entire brain to short-circuit for a second or so.
30. I've got a lot of decent learned behaviors as far as socially getting along with people and was another one of those "tests high, is weird" kids which was actually fine in the rural community where I grew up and is mostly fine in the rural community where I currently live. We always thought my dad was somewhere on the spectrum because he had a few sensory things that we only identified once the culture started recognizing that sort of thing. I was just thinking today how he used to holler "Quit slamming the door!" (when I hadn't) and now I have similar urges about similar doors and I know my partner just looks at me like "Huh?"
Sounds don't bother me but bright lights do and unexpected touching by another person, even like a hand on my shoulder, can cause my entire brain to short-circuit for a second or so.
I've got it with sounds, lights, and especially touching. Trying to explain to my partner that him scratching my back in a sort of random fashion "sounds" like loud static on a radio is really challenging to get across. And yet I love holding hands and a lot of other physical affection stuff but if someone touches me while I'm eating I get this weird microsecond of rage.
I follow a lot of autistics on Twitter and I learn a lot. I never brush my hair.
posted by jessamyn at 1:42 PM on August 28, 2018 [8 favorites]
30. I've got a lot of decent learned behaviors as far as socially getting along with people and was another one of those "tests high, is weird" kids which was actually fine in the rural community where I grew up and is mostly fine in the rural community where I currently live. We always thought my dad was somewhere on the spectrum because he had a few sensory things that we only identified once the culture started recognizing that sort of thing. I was just thinking today how he used to holler "Quit slamming the door!" (when I hadn't) and now I have similar urges about similar doors and I know my partner just looks at me like "Huh?"
Sounds don't bother me but bright lights do and unexpected touching by another person, even like a hand on my shoulder, can cause my entire brain to short-circuit for a second or so.
I've got it with sounds, lights, and especially touching. Trying to explain to my partner that him scratching my back in a sort of random fashion "sounds" like loud static on a radio is really challenging to get across. And yet I love holding hands and a lot of other physical affection stuff but if someone touches me while I'm eating I get this weird microsecond of rage.
I follow a lot of autistics on Twitter and I learn a lot. I never brush my hair.
posted by jessamyn at 1:42 PM on August 28, 2018 [8 favorites]
40. I've known for a while that I scored high on this and other assessments, but haven't pursued a diagnosis, and don't identify myself as being on the spectrum. It hasn't seemed necessary. That sort of information has rarely seemed to matter to other people in their decision-making about how to treat me; they decide based on my behavior, and that's sort of that-- explanations don't make much difference. There have been a few exceptions, and I will never stop regretting that I didn't learn how to be a better friend to them in time. Or just learn how to accept kindness without retreating until its threat goes away.
The autistic/aspergers narrative didn't fit the one my parents had for me. I asked once in my late teens if maybe it did, and the parent that was a psychologist said, no, you're much too good at being social/verbal/etc for that, so I didn't bother pursuing it further. Having a diagnosis of inattentive ADHD, which I was given early (before it was considered a common diagnosis or talked about much) seemed, again, more useful as a means for others to categorize me than a door to understanding. I had ADHD but was never allowed to be ADHD (or figure out my own way of functioning; coping mechanisms/time management/organizational tools were always imposed, and I was always a failure for not letting them make me normal). So as far as other people are concerned, what would have been the point? I learned how to mostly stop wanting to be liked while figuring out how to accept myself.
Being able to meet standards of attractiveness is a privilege that modifies, but does not negate, the other realities and difficulties that may come along with being autistic. The author's description of her success as far as husband(s)/babies/money goes is not entirely unrelatable to me, for all that I partly resent some of it-- there were times when all of that would have been my idea of happiness, but only if I could have managed to change myself fundamentally. As I am, that kind of life would make me miserable, and I would have to fake my way into it. I could do it, and am sometimes tempted, because (speaking for no one's experience or situation but my own) I don't think it's likely I will be loved otherwise. If I had a sense that a diagnosis would help with that in any way, maybe it would be worthwhile. But my experience with people has been much the same regardless of their diagnosis, so I don't see what difference mine would make.
The increasing awareness of sensory issues does make it a little easier for me to exist and get people to not give me a hard time about things like not wearing jewelry, though.
posted by notquitemaryann at 1:44 PM on August 28, 2018 [2 favorites]
The autistic/aspergers narrative didn't fit the one my parents had for me. I asked once in my late teens if maybe it did, and the parent that was a psychologist said, no, you're much too good at being social/verbal/etc for that, so I didn't bother pursuing it further. Having a diagnosis of inattentive ADHD, which I was given early (before it was considered a common diagnosis or talked about much) seemed, again, more useful as a means for others to categorize me than a door to understanding. I had ADHD but was never allowed to be ADHD (or figure out my own way of functioning; coping mechanisms/time management/organizational tools were always imposed, and I was always a failure for not letting them make me normal). So as far as other people are concerned, what would have been the point? I learned how to mostly stop wanting to be liked while figuring out how to accept myself.
Being able to meet standards of attractiveness is a privilege that modifies, but does not negate, the other realities and difficulties that may come along with being autistic. The author's description of her success as far as husband(s)/babies/money goes is not entirely unrelatable to me, for all that I partly resent some of it-- there were times when all of that would have been my idea of happiness, but only if I could have managed to change myself fundamentally. As I am, that kind of life would make me miserable, and I would have to fake my way into it. I could do it, and am sometimes tempted, because (speaking for no one's experience or situation but my own) I don't think it's likely I will be loved otherwise. If I had a sense that a diagnosis would help with that in any way, maybe it would be worthwhile. But my experience with people has been much the same regardless of their diagnosis, so I don't see what difference mine would make.
The increasing awareness of sensory issues does make it a little easier for me to exist and get people to not give me a hard time about things like not wearing jewelry, though.
posted by notquitemaryann at 1:44 PM on August 28, 2018 [2 favorites]
A couple of things I found odd: 31. I know how to tell if someone listening to me is getting bored. and 36. I find it easy to work out what someone is thinking or feeling just by looking at their face. I can do that. You can, actually, tell what people are thinking by looking at their face; you can certainly tell that they're thinking about something else other than you and what you're saying - their eyes glaze over and their face twitches. Most people don't see it because they're doing some kind of rapport. I don't do rapport very well. I've learned what bored looks like because I'm not a sadist. Sadly all it makes me do is talk faster, because I have to get to the end of what I'm saying.
Shrugs.
41, FWIW. I don't know that I place that much store in online tests for this, though, any more than I would an online IQ test (which I'm also pretty good at, even though reality has demonstrated to me that I'm not actually that bright).
My attitude in general could probably be summed up by intoning the phrase medicalizing neurodiversity... tch! with a bitter, harsh tone of voice. I preferred it when I was just an eccentric rather than someone who was potentially beholden to the medical profession.
posted by Grangousier at 1:59 PM on August 28, 2018 [3 favorites]
Shrugs.
41, FWIW. I don't know that I place that much store in online tests for this, though, any more than I would an online IQ test (which I'm also pretty good at, even though reality has demonstrated to me that I'm not actually that bright).
My attitude in general could probably be summed up by intoning the phrase medicalizing neurodiversity... tch! with a bitter, harsh tone of voice. I preferred it when I was just an eccentric rather than someone who was potentially beholden to the medical profession.
posted by Grangousier at 1:59 PM on August 28, 2018 [3 favorites]
I got a 24. Yet her description of her childhood resonated with me, because it was a description of growing up a bright outsider, and of course I know those feels. But you can be a bright outsider for so many reasons. Maybe because you're autistic. Myself, I was just a bookish, odd, and lonely kid, coming from a bookish, odd, and lonely family.
The writer may be autistic (after all, she says she thinks so), but I also think that maybe she's trying to make her daughter's life all about her, and has on emotional blinkers so that she's only seeing her daughter as a reflection of herself (and, oddly, only seeing herself as a reflection of her daughter). Like she and her daughter exist only as foils for each other? Something about this essay rubbed me the wrong way. It felt solipsic.
And I mean, I also hated having my hair brushed when I was a kid, because it's very frizzy and knots itself into pretty tight curls if I'm not careful, and that kind of hair is hard to get a brush through. (In fact, I broke my borrowed comb on vacation just last week. Thinking about it now, I didn't brush my hair today!). I feel like a lot of these details that the author is zooming in on in this article (like the hair brushing) are imbued with meaning for her personally, but aren't necessarily meaningful in anything like an objective sense. To me, as an outside eye, they illuminate her personal psychodrama, but they don't illuminate anything about growing up autistic or being an autistic adult.
I guess my point is that if she wants to talk about herself and how she views her past now, in light of being the mother to a daughter, that is completely and utterly valid. But if she wants to take her daughter's diagnosis as her own, and use it as a prism through which she's going to see her own past...I find that kind of dismissive of her daughter as an individual.
To answer the article's implicit question -- what would be the use of a diagnosis of autism for this woman as an adult? Maybe it would allow her to see herself and her life from a new perspective without having to usurp her daughter's story as her own.
At this point, now that she's apparently using autism as a prism through which to look anew at herself, what would getting diagnosed as *neurotypical* matter? That would be interesting to me. The knowledge that as lonely and alienated as she might have been as a kid, she can't understand her daughter because she isn't living in her daughter's head or living her daughter's life seems like it would challenge her more than learning "definitively" that she's autistic too would.
I don't mean to be harsh. I guess I just don't like seeing how the writer sets up herself and her daughter as echoes of each other. To me, it undermines them both.
posted by rue72 at 2:15 PM on August 28, 2018 [8 favorites]
The writer may be autistic (after all, she says she thinks so), but I also think that maybe she's trying to make her daughter's life all about her, and has on emotional blinkers so that she's only seeing her daughter as a reflection of herself (and, oddly, only seeing herself as a reflection of her daughter). Like she and her daughter exist only as foils for each other? Something about this essay rubbed me the wrong way. It felt solipsic.
And I mean, I also hated having my hair brushed when I was a kid, because it's very frizzy and knots itself into pretty tight curls if I'm not careful, and that kind of hair is hard to get a brush through. (In fact, I broke my borrowed comb on vacation just last week. Thinking about it now, I didn't brush my hair today!). I feel like a lot of these details that the author is zooming in on in this article (like the hair brushing) are imbued with meaning for her personally, but aren't necessarily meaningful in anything like an objective sense. To me, as an outside eye, they illuminate her personal psychodrama, but they don't illuminate anything about growing up autistic or being an autistic adult.
I guess my point is that if she wants to talk about herself and how she views her past now, in light of being the mother to a daughter, that is completely and utterly valid. But if she wants to take her daughter's diagnosis as her own, and use it as a prism through which she's going to see her own past...I find that kind of dismissive of her daughter as an individual.
To answer the article's implicit question -- what would be the use of a diagnosis of autism for this woman as an adult? Maybe it would allow her to see herself and her life from a new perspective without having to usurp her daughter's story as her own.
At this point, now that she's apparently using autism as a prism through which to look anew at herself, what would getting diagnosed as *neurotypical* matter? That would be interesting to me. The knowledge that as lonely and alienated as she might have been as a kid, she can't understand her daughter because she isn't living in her daughter's head or living her daughter's life seems like it would challenge her more than learning "definitively" that she's autistic too would.
I don't mean to be harsh. I guess I just don't like seeing how the writer sets up herself and her daughter as echoes of each other. To me, it undermines them both.
posted by rue72 at 2:15 PM on August 28, 2018 [8 favorites]
Metafilter: A conspiracy of autists' cousins
Metafilter: A portrait of the Autist as a Young Man
(41, fwiw)
posted by "mad dan" eccles at 2:23 PM on August 28, 2018 [3 favorites]
Metafilter: A portrait of the Autist as a Young Man
(41, fwiw)
posted by "mad dan" eccles at 2:23 PM on August 28, 2018 [3 favorites]
38. Not surprised, and neither should anyone who's seen me pick apart a Star Trek episode on FanFare, pixel by pixel. I tend to not self-identify publicly as ASD because self-diagnosing as such is already a cliche for anyone who likes science fiction and comics, which, going by box-office figures, is approximately everybody. I also remember the warnings that we got in my abnormal psychology class in college to not diagnose ourselves using the information in the class, which everyone ignored; I was quite sure that I was schizophrenic, sociopathic, and probably a big pervert as well. Relying on short online tests is a mug's game.
But I also have the results of some psychological tests and observations done when I was around 10-11, which included everything from an EEG to the infamous Rorschach inkblot tests, and there are an awful lot of the ASD markers there.
posted by Halloween Jack at 2:28 PM on August 28, 2018 [4 favorites]
But I also have the results of some psychological tests and observations done when I was around 10-11, which included everything from an EEG to the infamous Rorschach inkblot tests, and there are an awful lot of the ASD markers there.
posted by Halloween Jack at 2:28 PM on August 28, 2018 [4 favorites]
40. Not a surprise. The surprise was taking one of these tests for the first time in my 50's. So much explained and made clear for the first time. Wish I'd had some sort of map or compass far earlier. Would have possibly saved me from walking over a few of those cliffs...
posted by jim in austin at 2:31 PM on August 28, 2018 [1 favorite]
posted by jim in austin at 2:31 PM on August 28, 2018 [1 favorite]
> not really sure what to do with this information, to be honest
Nothing? If you think you might have autism and you would like to know for sure, find a psychologist and be thoroughly tested. Not to pick on you in particular, but I don't think tests like this are helpful and might actually be harmful in that they lead to the "oh, we're all a little bit autistic" way of thinking.
posted by The corpse in the library at 2:35 PM on August 28, 2018 [6 favorites]
Nothing? If you think you might have autism and you would like to know for sure, find a psychologist and be thoroughly tested. Not to pick on you in particular, but I don't think tests like this are helpful and might actually be harmful in that they lead to the "oh, we're all a little bit autistic" way of thinking.
posted by The corpse in the library at 2:35 PM on August 28, 2018 [6 favorites]
I know that I don't have autism, but I wanted to see what the test was like, so I started taking it. And characteristic of ADHD, I which I do have, I kept having to scroll up and down because I just could not remember which column each response was, and then got to question 19 or so and got bored because the test was requiring too much thinking, and closed the tab.
posted by trillian at 2:47 PM on August 28, 2018 [6 favorites]
posted by trillian at 2:47 PM on August 28, 2018 [6 favorites]
That psychology.tools.com test was so weighted with class baggage and cultural assumptions that even if it weren't easy to game from the outset, I'm suspicious of its diagnostic value.
"I am often the last to understand the point of a joke"? Sorry if you come from a different background, social or otherwise, that doesn't share the same sense of humor as your present environment. (Ditto manners/etiquette for "Other people frequently tell me that what I’ve said is impolite, even though I think it is polite.")
"I would rather go to a library than to a party"? Well, good luck to you if you didn't grow up in a community where libraries were available or that you'd be welcome in.
"I would rather go to the theater than to a museum"? Is even more presumptuous, and I'm speaking as someone who loves the theater (the only drawback is that these days it's much easier to find an interesting museum than a competently staged play).
Et cetera, et cetera.
Honestly, this test reeks of Oxbridge.
posted by Doktor Zed at 2:49 PM on August 28, 2018 [10 favorites]
"I am often the last to understand the point of a joke"? Sorry if you come from a different background, social or otherwise, that doesn't share the same sense of humor as your present environment. (Ditto manners/etiquette for "Other people frequently tell me that what I’ve said is impolite, even though I think it is polite.")
"I would rather go to a library than to a party"? Well, good luck to you if you didn't grow up in a community where libraries were available or that you'd be welcome in.
"I would rather go to the theater than to a museum"? Is even more presumptuous, and I'm speaking as someone who loves the theater (the only drawback is that these days it's much easier to find an interesting museum than a competently staged play).
Et cetera, et cetera.
Honestly, this test reeks of Oxbridge.
posted by Doktor Zed at 2:49 PM on August 28, 2018 [10 favorites]
There are lots of other tests on there for anyone who would like to load up on ailments. I just discovered I have post-natal depression, for example.
posted by Grangousier at 2:54 PM on August 28, 2018 [13 favorites]
posted by Grangousier at 2:54 PM on August 28, 2018 [13 favorites]
25. There's something very wrong with me by society's norms but it's not autism. I really identify with some of the indicators, but not with others.
posted by Squeak Attack at 3:08 PM on August 28, 2018 [3 favorites]
posted by Squeak Attack at 3:08 PM on August 28, 2018 [3 favorites]
Not surprised with my score. I know this is an imperfect tool, but knowing that the average score for the control group is 18 puts things in perspective, I would have expected it to be around 25.
I agree with the main issue in the article. A diagnosis at this point would do nothing for me. When I was a child it would have been worse, I saw how kids with official diagnosis were treated at school.
I like my diagnosis of being a awkward weirdo with moments of genius. I only resent it a little bit when I am introduced by my political family as "the walking Wikipedia".
I am very lucky to have the life I have.
It feels so good to get home after work and know that there I am loved because I'd rather stay in watching my ants than go out to a loud place.
So yeah, whatevs, there are dozens of us here. Have a badly aimed high-five, an awkward stiff hug, some mumbled words of encouragement, or whatever you do for solidarity.
posted by Dr. Curare at 3:29 PM on August 28, 2018 [6 favorites]
I agree with the main issue in the article. A diagnosis at this point would do nothing for me. When I was a child it would have been worse, I saw how kids with official diagnosis were treated at school.
I like my diagnosis of being a awkward weirdo with moments of genius. I only resent it a little bit when I am introduced by my political family as "the walking Wikipedia".
I am very lucky to have the life I have.
It feels so good to get home after work and know that there I am loved because I'd rather stay in watching my ants than go out to a loud place.
So yeah, whatevs, there are dozens of us here. Have a badly aimed high-five, an awkward stiff hug, some mumbled words of encouragement, or whatever you do for solidarity.
posted by Dr. Curare at 3:29 PM on August 28, 2018 [6 favorites]
33. I could have MsEld (or someone else at her office) eval me for real and see how this correlates (or doesn't) with the test we're all fawning over... though I don't know what would really come of that testing/result.
It correlates. It's the one coming from Baron-Cohen. I don't have journal access any more, but it's pretty easy to find the papers. (Heck, there's a citation at the bottom of the page.) The summary is "there's a correlation, it's not diagnostic and wasn't really intended to be".
Math majors tend to score abnormally high. I actually having a conversation about this over the weekend. An Asperger's diagnosis was mooted for my brother in fourth or fifth grade and the results after evaluating both of us were "Dunno, your kids are weird." As adults, my brother is more adept in social situations and I honestly would not be surprised if the difference was that I was a math major and then did a math PhD and he was a CS major at a posh university, meaning I didn't have to work as hard at conforming to social norms. I got like half an ASD diagnosis in grad school, but didn't bother pursuing it because there was little apparent upside and it would have involved telephones and taking the bus to St Paul.
Honestly, this test reeks of Oxbridge.
Not a coincidence.
posted by hoyland at 3:54 PM on August 28, 2018 [4 favorites]
It correlates. It's the one coming from Baron-Cohen. I don't have journal access any more, but it's pretty easy to find the papers. (Heck, there's a citation at the bottom of the page.) The summary is "there's a correlation, it's not diagnostic and wasn't really intended to be".
Math majors tend to score abnormally high. I actually having a conversation about this over the weekend. An Asperger's diagnosis was mooted for my brother in fourth or fifth grade and the results after evaluating both of us were "Dunno, your kids are weird." As adults, my brother is more adept in social situations and I honestly would not be surprised if the difference was that I was a math major and then did a math PhD and he was a CS major at a posh university, meaning I didn't have to work as hard at conforming to social norms. I got like half an ASD diagnosis in grad school, but didn't bother pursuing it because there was little apparent upside and it would have involved telephones and taking the bus to St Paul.
Honestly, this test reeks of Oxbridge.
Not a coincidence.
posted by hoyland at 3:54 PM on August 28, 2018 [4 favorites]
Brushing your hair isn’t just about visual presentation—it keeps the hair from matting. I really try not to urge people who label themselves as “mama”, but honestly.
16 but so ADD I flicker.
posted by Ideefixe at 3:59 PM on August 28, 2018
16 but so ADD I flicker.
posted by Ideefixe at 3:59 PM on August 28, 2018
I loved letters and numbers. I loved symbols. I checked the same book on Egyptian hieroglyphics out of my little school library week after week and memorized the figures. I copied them onto paper and wrote sentences and paragraphs with them.
Reading for me was like doing a cut-and-paste into my brain. Once I read something, it became imprinted in my memory. When I tried to recall whatever I had read, I would literally see the page with the information on it in my mind. I’d read the page as a picture to get the information. I still do this, although not as nimbly. It’s just the way my brain works.
I learned the runes from The Hobbit and wrote in them. Memorised every poem from LotR and wrote them out in runes in my school diary endlessly. (I still do this sometimes. It's very soothing!)
posted by Cheerwell Maker at 4:01 PM on August 28, 2018 [3 favorites]
Reading for me was like doing a cut-and-paste into my brain. Once I read something, it became imprinted in my memory. When I tried to recall whatever I had read, I would literally see the page with the information on it in my mind. I’d read the page as a picture to get the information. I still do this, although not as nimbly. It’s just the way my brain works.
I learned the runes from The Hobbit and wrote in them. Memorised every poem from LotR and wrote them out in runes in my school diary endlessly. (I still do this sometimes. It's very soothing!)
posted by Cheerwell Maker at 4:01 PM on August 28, 2018 [3 favorites]
I got a 12, but I think about half of my family of origin has undiagnosed autism (including my now-deceased parent who was my primary caretaker), so I have a couple of big gaps in my social skills training, including interrupting people a lot and going on too long in conversation. So I guess that makes me autism-adjacent.
posted by matildaben at 4:02 PM on August 28, 2018 [1 favorite]
posted by matildaben at 4:02 PM on August 28, 2018 [1 favorite]
42, but that could easily be lowered as my answers are more less still in flux, as I continue to grow as a person and learn how to adapt to people and the world around me.
This was a great read. It's eerie how the author is kinda like the female version of me (cis male). So many spooky parallels including, just to name a couple of them, the adolescent realization about "real power in appearance", and then much later learning about ASD through our daughters' struggles. My own daughter, now in her twenties, thankfully struggles much less than she did while growing up, and much less than I did at her current age. To the point where she still privately identifies as being on the spectrum, but doesn't really feel like it's that big of a deal any more.
posted by christopherious at 4:08 PM on August 28, 2018 [3 favorites]
This was a great read. It's eerie how the author is kinda like the female version of me (cis male). So many spooky parallels including, just to name a couple of them, the adolescent realization about "real power in appearance", and then much later learning about ASD through our daughters' struggles. My own daughter, now in her twenties, thankfully struggles much less than she did while growing up, and much less than I did at her current age. To the point where she still privately identifies as being on the spectrum, but doesn't really feel like it's that big of a deal any more.
posted by christopherious at 4:08 PM on August 28, 2018 [3 favorites]
32, pretty much as expected. I'm more-or-less socially fluent, but it's work.
posted by mwhybark at 4:16 PM on August 28, 2018 [2 favorites]
posted by mwhybark at 4:16 PM on August 28, 2018 [2 favorites]
To me, as an outside eye, they illuminate her personal psychodrama, but they don't illuminate anything about growing up autistic or being an autistic adult.
Ok, but clearly many of those specific details do in fact resonate hugely with many autistic adults, so you may want to consider that your blithe statement that they have nothing to do with autism could be... incomplete or biased.
posted by Cheerwell Maker at 4:19 PM on August 28, 2018 [4 favorites]
Ok, but clearly many of those specific details do in fact resonate hugely with many autistic adults, so you may want to consider that your blithe statement that they have nothing to do with autism could be... incomplete or biased.
posted by Cheerwell Maker at 4:19 PM on August 28, 2018 [4 favorites]
I took the quiz out of curiosity because I know I'm not on the spectrum, but I am an introvert with ADHD. I scored 28. There are a lot of questions on there that would elicit a strong response from anyone who is not neurotypical or an extrovert.
posted by soren_lorensen at 4:36 PM on August 28, 2018 [8 favorites]
posted by soren_lorensen at 4:36 PM on August 28, 2018 [8 favorites]
So is this just a biased sample or is MeFi high on AQ? I got 17.
posted by cichlid ceilidh at 4:40 PM on August 28, 2018
posted by cichlid ceilidh at 4:40 PM on August 28, 2018
I think that people who've ever wondered if they might be autistic are more likely to take that test than people who have never had that thought, and people who have interesting (which is to say high) scores are more likely to comment than people whose scores are normal. So no, probably not a representative sample of MeFites.
posted by ArbitraryAndCapricious at 4:43 PM on August 28, 2018 [11 favorites]
posted by ArbitraryAndCapricious at 4:43 PM on August 28, 2018 [11 favorites]
Who volunteers for control group?
that’s not how control group works. you need to have them close their eyes while they volunteer
posted by q*ben at 5:05 PM on August 28, 2018 [7 favorites]
that’s not how control group works. you need to have them close their eyes while they volunteer
posted by q*ben at 5:05 PM on August 28, 2018 [7 favorites]
44 - it would have never occurred to me to take a test like this 20 years ago or to think much about autism at all
like the author, i discovered that my daughter had autism 17 years ago and the whole article is an eerie parallel to my life - except i seem to have missed the sex symbol model stage
but it's really weird how you learn from your kids ...
posted by pyramid termite at 5:07 PM on August 28, 2018 [4 favorites]
like the author, i discovered that my daughter had autism 17 years ago and the whole article is an eerie parallel to my life - except i seem to have missed the sex symbol model stage
but it's really weird how you learn from your kids ...
posted by pyramid termite at 5:07 PM on August 28, 2018 [4 favorites]
31, but that’s after years of being socialized to learn how to be sociable as a woman. I remember the exact moment I figured out that I was going to have to learn how other people seemed to know what others were feeling, or what the right thing to say was, or what all the unspoken rules surrounding social expectations were, because it was when I started getting seriously bullied by kids and the adults in charge for failing to do so.
So, I attacked it analytically. I spent all my energy doing that, for years. It paid off, I guess. I mean, I was a broker for a while; I can talk to anybody now, if I put effort into it. And if I drop my concentration bc I’m bored or tired or just don’t give a fuck, the inappropriateness (or whatever the duck it is) comes right out.
So I guess I can pass, for the most part. It just exhausts the shit out of me.
And I can’t help but wonder what I could have done with all that energy otherwise.
posted by schadenfrau at 5:23 PM on August 28, 2018 [20 favorites]
So, I attacked it analytically. I spent all my energy doing that, for years. It paid off, I guess. I mean, I was a broker for a while; I can talk to anybody now, if I put effort into it. And if I drop my concentration bc I’m bored or tired or just don’t give a fuck, the inappropriateness (or whatever the duck it is) comes right out.
So I guess I can pass, for the most part. It just exhausts the shit out of me.
And I can’t help but wonder what I could have done with all that energy otherwise.
posted by schadenfrau at 5:23 PM on August 28, 2018 [20 favorites]
Symptoms that fit autism seem to fit other behavioral patterns too. Not sure if any are exclusive to autism.
posted by ZeusHumms at 5:44 PM on August 28, 2018
posted by ZeusHumms at 5:44 PM on August 28, 2018
I didn't know how to rate myself on being able to infer characters' motivations in fiction. Can someone suggest a good empirical test for this, involving a short story at most?
posted by Baeria at 5:57 PM on August 28, 2018 [1 favorite]
posted by Baeria at 5:57 PM on August 28, 2018 [1 favorite]
Honestly, this test reeks of Oxbridge.
“Simon Baron-Cohen FBA FBPsS (born 15 August 1958) is an English clinical psychologist, professor of developmental psychopathology at the University of Cambridge in the United Kingdom.”
So, yeah.
posted by Halloween Jack at 6:01 PM on August 28, 2018 [2 favorites]
“Simon Baron-Cohen FBA FBPsS (born 15 August 1958) is an English clinical psychologist, professor of developmental psychopathology at the University of Cambridge in the United Kingdom.”
So, yeah.
posted by Halloween Jack at 6:01 PM on August 28, 2018 [2 favorites]
31, and it would've been much higher twenty years ago. I've acquired a lot of social skills and am now relatively comfortable with small talk, but they were definitely conscious acquisitions that I worked on.
posted by ErisLordFreedom at 6:07 PM on August 28, 2018 [1 favorite]
posted by ErisLordFreedom at 6:07 PM on August 28, 2018 [1 favorite]
26. Definitely a bright outsider growing up. Loner on the playground, spelling bees, relying on memorization for as long as I could. I've suspected for a while that I'm somewhere on the spectrum.
I was that flexible when I was the daughter's age.I wanted to see her flapping, to compare because, yeah.
Like others who've said the same, I don't really know what to do with any of this information. Huh.
posted by emelenjr at 6:26 PM on August 28, 2018 [1 favorite]
I was that flexible when I was the daughter's age.I wanted to see her flapping, to compare because, yeah.
Like others who've said the same, I don't really know what to do with any of this information. Huh.
posted by emelenjr at 6:26 PM on August 28, 2018 [1 favorite]
rue72 YES. All that and then some. Thank you so much for putting your finger on what was bugging me.
Sure, Author, maybe you're autistic and your experience of autism is really similar to what your daughter is experiencing, or maybe you're autistic but it's not similar, or maybe you're not autistic but her personality is similar to yours and so, autism notwithstanding, you have similar childhood experiences with regard to peers. Maybe she's your kid, and your experiences are relevant to hers, but like all other mother's daughters... she can't live your childhood over for you.
Maybe she'll swirl. Maybe she won't. Maybe she won't even want to. But gods help us, you can't ensure that her preteen years aren't replete with awkwardness, angst, and feelings of being a total pariah. That's just literally what middle school is, man.
I have this as gospel truth from my little sister, who was a cheerleader and by all appearances in the thick of the popular crowd. She also felt like an alien.
posted by Made of Star Stuff at 6:31 PM on August 28, 2018 [5 favorites]
Sure, Author, maybe you're autistic and your experience of autism is really similar to what your daughter is experiencing, or maybe you're autistic but it's not similar, or maybe you're not autistic but her personality is similar to yours and so, autism notwithstanding, you have similar childhood experiences with regard to peers. Maybe she's your kid, and your experiences are relevant to hers, but like all other mother's daughters... she can't live your childhood over for you.
Maybe she'll swirl. Maybe she won't. Maybe she won't even want to. But gods help us, you can't ensure that her preteen years aren't replete with awkwardness, angst, and feelings of being a total pariah. That's just literally what middle school is, man.
I have this as gospel truth from my little sister, who was a cheerleader and by all appearances in the thick of the popular crowd. She also felt like an alien.
posted by Made of Star Stuff at 6:31 PM on August 28, 2018 [5 favorites]
I scored a 40. I've taken it multiple times before and have always scored a 40 or slightly higher.
I wish I knew how to go about getting a diagnosis. I'm 44 years old and have good coping mechanisms, but I dearly want a real diagnosis so that I could request accommodations at work. Noise and nearby conversations drive me mad, daily.
posted by Annabelle74 at 6:39 PM on August 28, 2018 [2 favorites]
I wish I knew how to go about getting a diagnosis. I'm 44 years old and have good coping mechanisms, but I dearly want a real diagnosis so that I could request accommodations at work. Noise and nearby conversations drive me mad, daily.
posted by Annabelle74 at 6:39 PM on August 28, 2018 [2 favorites]
35, pulling punches. I have semi-recently realized I am much worse at social skills than previously thought (that question of: I can tell if people are bored, when I've previously took this test, I thought, "I have never had someone be bored when I'm talking to them" and uh, that should've been a big-ass red flag there) which is part of what makes these self reports so hard. I also grew up in a very culturally polite area of the country and never had many of these flaws pointed out to me; for example, it wasn't until a couple take-no-shit professors snapped at me for interrupting them did I realize I do that all the time, not intentionally, but because I didn't realize it wasn't my turn to talk.
So for most of my childhood instead of having these failures pointed out to me, it manifested as just no one wanted to talk to or interact with me except for one or two other "weird" kids at school, whom I almost always failed to keep up with over the school year and so frequently lost as friends. I don't think I ever experienced the loneliness the the author describes, though--not until after college. Prior to that I just... didn't have any concept of what having friends was like. It wasn't something that I felt a lack of because I had never experienced anything else. It wasn't until I fell in with a bunch of neurodivergent folks in college and actually experienced friendship that, after I left college and we all went our separate ways (and guess who are SUPER BAD at keeping in touch?? neurodivergent folks!!), I started to feel that loneliness. But as a kid, I remember my parents explicitly talking about how worried they were that I didn't have any friends, and I was just like... what's the big deal? I've got books! I'm not bored!
And oh, the hair brushing thing... I probably had the same solid rat's nest in my hair for a full academic year because I just shrugged and put it in a pony tail that mostly hid it and continued on my merry way (add in graphic tees and baggy jeans and no bra, and it was quite the look). Showers and brushing teeth were also hard. I remember freshman year of high school I had a week where I just never got around to showering and a very nice and extremely tactful girl pulled me aside to let me know that the other girls in gym class were talking about how bad as I smelled and she wanted to let me know.
I am better at it now, but only because I finally internalized the idea that other people care how I look. I never cared how other people looked so I just assumed no one else cared how I looked. Even after intellectually "realizing" that it took a long time to think about it in my day to day life. If I'm going to be seeing someone that's not a family member or close friend I now make an effort to dress with a little more care and brush my hair, but I still can't do makeup or eyebrows or actually figure how how to buy clothes that fit me well, and I frequently find myself falling into the pattern of wearing the same pants and jacket for two weeks with just a different shirt. I just learned to buy 'nice' pants and shirts so I look less like trashed. And I still haven't internalized caring about strangers' opinions on how I look; if I'm not planning on seeing someone I know, I will go straight back to baggy t-shirts and whatever bottom is most comfortable, regardless of whether it matches. You're lucky if I even glance at myself in the mirror, and unless my hair has a massive rat's nest I ain't doing shit with it (and, if it does, I'll just put my hair back until I'm planning on seeing someone and have to actually deal with it...).
posted by brook horse at 6:39 PM on August 28, 2018 [3 favorites]
So for most of my childhood instead of having these failures pointed out to me, it manifested as just no one wanted to talk to or interact with me except for one or two other "weird" kids at school, whom I almost always failed to keep up with over the school year and so frequently lost as friends. I don't think I ever experienced the loneliness the the author describes, though--not until after college. Prior to that I just... didn't have any concept of what having friends was like. It wasn't something that I felt a lack of because I had never experienced anything else. It wasn't until I fell in with a bunch of neurodivergent folks in college and actually experienced friendship that, after I left college and we all went our separate ways (and guess who are SUPER BAD at keeping in touch?? neurodivergent folks!!), I started to feel that loneliness. But as a kid, I remember my parents explicitly talking about how worried they were that I didn't have any friends, and I was just like... what's the big deal? I've got books! I'm not bored!
And oh, the hair brushing thing... I probably had the same solid rat's nest in my hair for a full academic year because I just shrugged and put it in a pony tail that mostly hid it and continued on my merry way (add in graphic tees and baggy jeans and no bra, and it was quite the look). Showers and brushing teeth were also hard. I remember freshman year of high school I had a week where I just never got around to showering and a very nice and extremely tactful girl pulled me aside to let me know that the other girls in gym class were talking about how bad as I smelled and she wanted to let me know.
I am better at it now, but only because I finally internalized the idea that other people care how I look. I never cared how other people looked so I just assumed no one else cared how I looked. Even after intellectually "realizing" that it took a long time to think about it in my day to day life. If I'm going to be seeing someone that's not a family member or close friend I now make an effort to dress with a little more care and brush my hair, but I still can't do makeup or eyebrows or actually figure how how to buy clothes that fit me well, and I frequently find myself falling into the pattern of wearing the same pants and jacket for two weeks with just a different shirt. I just learned to buy 'nice' pants and shirts so I look less like trashed. And I still haven't internalized caring about strangers' opinions on how I look; if I'm not planning on seeing someone I know, I will go straight back to baggy t-shirts and whatever bottom is most comfortable, regardless of whether it matches. You're lucky if I even glance at myself in the mirror, and unless my hair has a massive rat's nest I ain't doing shit with it (and, if it does, I'll just put my hair back until I'm planning on seeing someone and have to actually deal with it...).
posted by brook horse at 6:39 PM on August 28, 2018 [3 favorites]
37
If you're interested in another instrument that evaluates potential for an autism diagnosis, the RAADS-R is a good one. It takes into account that adult autistics develop adaptations over time, and is similar to the formal adult diagnosis that relies on interviews with family members in order to form a more complete picture over time. The clinimetric properties are well documented in this paper.
Like the author, I've recently come to the sudden realization in late midlife that I'm autistic, in part because my son was struggling. This has been a very difficult year, with the whole family in therapy and adjusting to a new piece of my identity. One the one hand, this changes nothing - I'm no different than I was before the diagnosis. On the other hand, viewing my life through the lens of autism has been a significant tool for understanding.
The realization has helped me come to grips with painful memories that I would continually revisit. I can see how this plays out in my present struggles with interpersonal situations at work, and in my relationships with my family and friends. It's been liberating to recognize it as a tremendous superpower at times (focus! special interests! logical analysis!) and to marvel at the adaptations I've been able to develop over the years.
Ultimately, it's helped me learn to be more compassionate toward myself. I spent a lot of my life punishing myself for being unable to understand the simple rules behind social interactions, thinking that if I could figure it out, I would be just like them.
I now know that I'm not neurotypical. And that's great.
posted by Otherwise at 6:41 PM on August 28, 2018 [14 favorites]
If you're interested in another instrument that evaluates potential for an autism diagnosis, the RAADS-R is a good one. It takes into account that adult autistics develop adaptations over time, and is similar to the formal adult diagnosis that relies on interviews with family members in order to form a more complete picture over time. The clinimetric properties are well documented in this paper.
Like the author, I've recently come to the sudden realization in late midlife that I'm autistic, in part because my son was struggling. This has been a very difficult year, with the whole family in therapy and adjusting to a new piece of my identity. One the one hand, this changes nothing - I'm no different than I was before the diagnosis. On the other hand, viewing my life through the lens of autism has been a significant tool for understanding.
The realization has helped me come to grips with painful memories that I would continually revisit. I can see how this plays out in my present struggles with interpersonal situations at work, and in my relationships with my family and friends. It's been liberating to recognize it as a tremendous superpower at times (focus! special interests! logical analysis!) and to marvel at the adaptations I've been able to develop over the years.
Ultimately, it's helped me learn to be more compassionate toward myself. I spent a lot of my life punishing myself for being unable to understand the simple rules behind social interactions, thinking that if I could figure it out, I would be just like them.
I now know that I'm not neurotypical. And that's great.
posted by Otherwise at 6:41 PM on August 28, 2018 [14 favorites]
Noise and nearby conversations drive me mad, daily.
Annabelle, my wife (who I have not asked to take the test) has sensory issues and misophonia, which I mostly do not. She has had some luck in requesting accomodation to her misophonia without a diagnosis, in an open-plan call-center, in the US. Perhaps it would not hurt to lodge some enquiries.
posted by mwhybark at 7:00 PM on August 28, 2018
Annabelle, my wife (who I have not asked to take the test) has sensory issues and misophonia, which I mostly do not. She has had some luck in requesting accomodation to her misophonia without a diagnosis, in an open-plan call-center, in the US. Perhaps it would not hurt to lodge some enquiries.
posted by mwhybark at 7:00 PM on August 28, 2018
32. And unsurprised, as I was just last week complaining that our employee self-assessment, that has a scale of "never, rarely, sometimes, always" for describing behaviours, rewards only liars and the deluded.
posted by MarchHare at 7:02 PM on August 28, 2018 [1 favorite]
posted by MarchHare at 7:02 PM on August 28, 2018 [1 favorite]
Otherwise, I do not recall when I knew but at some point I did, and it recast many, many frustrating and enlightening relationships over the course of my life. I tend to form lasting social bonds only with other people that present to me as non-neurotypical, and to have difficulty experiencing empathy toward those that do not. Unsurprisingly, this has led to many deeply frustrating relationships. Realizing this fact has helped me to exhibit empathy in a more socially appropriate manner toward people who really wished to see it exhibited, and to moderate my display toward those who I percieve to be less consciously desirous of it.
posted by mwhybark at 7:06 PM on August 28, 2018 [2 favorites]
posted by mwhybark at 7:06 PM on August 28, 2018 [2 favorites]
The personal-appearance thing is of interest to me too. I do take pride and care in my personal appearance, but to a degree it is *not for you.* That is to say, I don't much care what *you* think about how I look, but I control and shape it and care greatly about what *I* think about it. I'm pleased if you like it or are interested in it, but I will witheringly let you know how insignificant your opinion is to me if you let me know that you find it troubling, distasteful, inappropriate, or whatever. It's not my favorite personality trait. I currently look a great deal like Gandalf or a non-chubby Santa, and when I get fuck-offy, it is surprising to people.
posted by mwhybark at 7:14 PM on August 28, 2018
posted by mwhybark at 7:14 PM on August 28, 2018
I thought I was pulling punches, and I know I'm much better than I used to be. I still got a 45.
Sometimes I wonder what life would have been like if I'd been diagnosed. Weirdly to my mind is that this is actually my mother's job, and I normally sat next to the autistic boy in my class and his teacher's aide. I was barely verbal and terrible at school until about grade 4 as well. Couple that with myriad sensory issues and it boggles the mind how they could have missed it.
Maybe if I was a boy it would've been diagnosed?
posted by Trifling at 7:31 PM on August 28, 2018 [7 favorites]
Sometimes I wonder what life would have been like if I'd been diagnosed. Weirdly to my mind is that this is actually my mother's job, and I normally sat next to the autistic boy in my class and his teacher's aide. I was barely verbal and terrible at school until about grade 4 as well. Couple that with myriad sensory issues and it boggles the mind how they could have missed it.
Maybe if I was a boy it would've been diagnosed?
posted by Trifling at 7:31 PM on August 28, 2018 [7 favorites]
Hmm. I got an 18, and a low score (41) on the RAADS-R as well. I've always felt like I have some pretty big social gaps but I think that screener made it pretty clear to me that it's not autism -- and anything that I did identify with overlaps with social anxiety.
My brother (only sibling) has been diagnosed as on the spectrum and I suspect my dad is too. I grew up with somewhat limited social interaction outside of my own family (I mean, I went to school, but we lived in a rural area and didn't have a large social circle as a family). Taking that test has made me wonder if part of my social anxiety comes from practicing social skills at home but being socially perceptive enough when I went out into the world to understand that the way I was interacting with others wasn't quite landing.
Food for thought, anyway.
posted by geegollygosh at 8:31 PM on August 28, 2018 [5 favorites]
My brother (only sibling) has been diagnosed as on the spectrum and I suspect my dad is too. I grew up with somewhat limited social interaction outside of my own family (I mean, I went to school, but we lived in a rural area and didn't have a large social circle as a family). Taking that test has made me wonder if part of my social anxiety comes from practicing social skills at home but being socially perceptive enough when I went out into the world to understand that the way I was interacting with others wasn't quite landing.
Food for thought, anyway.
posted by geegollygosh at 8:31 PM on August 28, 2018 [5 favorites]
17, boringly average as usual. I'm kind of a loner but I think that's mostly because I was an only child and learned to entertain myself. I don't require much human contact.
I have a (professionally diagnosed) autistic friend who has waaay more friends than I do. They run a meetup group for asexuals and I think a gaming club too. So it's hard for me to really "get" what autism is because obviously they can socialize just fine. They're really into a topic - a specific animal species - but I'm really into a TV show. I've been told (nicely) to shut up about it. They don't like a lot of lights and loud noise but how many people over 30 do? That's why most people in bars are younger. Lots of kids feel like the weird kid. I feel like we're slapping labels on common human variations. I realize it's a self-selecting sample, and the test is not meant to diagnose, but look how many people in this thread scored 40+. A diagnosis is kind of meaningless if a plurality share the same traits.
posted by AFABulous at 9:05 PM on August 28, 2018 [5 favorites]
I have a (professionally diagnosed) autistic friend who has waaay more friends than I do. They run a meetup group for asexuals and I think a gaming club too. So it's hard for me to really "get" what autism is because obviously they can socialize just fine. They're really into a topic - a specific animal species - but I'm really into a TV show. I've been told (nicely) to shut up about it. They don't like a lot of lights and loud noise but how many people over 30 do? That's why most people in bars are younger. Lots of kids feel like the weird kid. I feel like we're slapping labels on common human variations. I realize it's a self-selecting sample, and the test is not meant to diagnose, but look how many people in this thread scored 40+. A diagnosis is kind of meaningless if a plurality share the same traits.
posted by AFABulous at 9:05 PM on August 28, 2018 [5 favorites]
There's also (apparently) so much variation between autistic people that I don't understand how it's a meaningful category. Doing well or doing poorly in school are both markers, somehow.
posted by AFABulous at 9:07 PM on August 28, 2018 [4 favorites]
posted by AFABulous at 9:07 PM on August 28, 2018 [4 favorites]
33 and I make damn sure to get all the knots out. But never really did grok the whole making (and retaining) friends thing.
posted by The Ardship of Cambry at 9:27 PM on August 28, 2018
posted by The Ardship of Cambry at 9:27 PM on August 28, 2018
Anyone in this thread have some kind of background to help critically appraise this test? Is this test generally accepted by the autistic community? Other autism researchers? Developmental psychologists?
posted by latkes at 9:34 PM on August 28, 2018 [3 favorites]
posted by latkes at 9:34 PM on August 28, 2018 [3 favorites]
I don't think tests like this are helpful and might actually be harmful in that they lead to the "oh, we're all a little bit autistic" way of thinking.
It certainly wouldn't be the only bit of harmful scholarship from Dr. Baron-Cohen (see for example the "extreme male brain" theory, with its implicit erasure of autistic women's experiences). (Baron-Cohen is a prolific academic who has also been part of many important insights in the field, so I don't mean this as a personal condemnation; although I think reasonable people could feel otherwise.)
But on the other question, while we're certainly not all a little bit autistic, there is a very solid body of research on subclinical autism, also known as the "Broader Autism Phenotype" (BAP). Given that ASD is diagnosed based on three categories of symptoms and a judgment that (in the language of the DSM-V) these symptoms "cause clinically significant impairment in social, occupational, or other important areas of current functioning," subclinical autism is essentially the presence of autistic symptoms but the absence of a (clinician-recognized) clinical impairment. Since disability arises from social context, being subclinical can be as much a product of one's life situation as of one's symptoms.
(Notably, the AQ is often used to study the BAP, although there are many other measures -- which may be more valid, since as noted above, this isn't really what the AQ was designed to measure.)
In terms of how we conceptualize this, I would like to put in a word for a more nuanced understanding of the "spectrum" metaphor. A spectrum is not a gradient; talking about someone being e.g. on "the high-functioning end of the spectrum"* is like saying a particular color is "on the colorful end of the spectrum." By which I mean, it literally makes no sense. The question of the intensity of a light is completely different from the question of what color it is.
The light of autism in some people (regardless of its color, i.e. the particular combination of symptoms) shines brightly enough that it causes serious problems (ASD). In others it glows dimly enough that it doesn't get in the way (BAP). In others, it may shine not at all (NT). But a dim light and a bright light are both lights. Imagining the spectrum as a mere grayscale gradient obscures this fact, and leads IMO to some unnecessarily absolutist thinking about what it means to be "on the spectrum."
* This phrase has a distressing 22,000 Google hits. Removing the definite article takes it up to 26,000.
posted by shenderson at 9:37 PM on August 28, 2018 [18 favorites]
It certainly wouldn't be the only bit of harmful scholarship from Dr. Baron-Cohen (see for example the "extreme male brain" theory, with its implicit erasure of autistic women's experiences). (Baron-Cohen is a prolific academic who has also been part of many important insights in the field, so I don't mean this as a personal condemnation; although I think reasonable people could feel otherwise.)
But on the other question, while we're certainly not all a little bit autistic, there is a very solid body of research on subclinical autism, also known as the "Broader Autism Phenotype" (BAP). Given that ASD is diagnosed based on three categories of symptoms and a judgment that (in the language of the DSM-V) these symptoms "cause clinically significant impairment in social, occupational, or other important areas of current functioning," subclinical autism is essentially the presence of autistic symptoms but the absence of a (clinician-recognized) clinical impairment. Since disability arises from social context, being subclinical can be as much a product of one's life situation as of one's symptoms.
(Notably, the AQ is often used to study the BAP, although there are many other measures -- which may be more valid, since as noted above, this isn't really what the AQ was designed to measure.)
In terms of how we conceptualize this, I would like to put in a word for a more nuanced understanding of the "spectrum" metaphor. A spectrum is not a gradient; talking about someone being e.g. on "the high-functioning end of the spectrum"* is like saying a particular color is "on the colorful end of the spectrum." By which I mean, it literally makes no sense. The question of the intensity of a light is completely different from the question of what color it is.
The light of autism in some people (regardless of its color, i.e. the particular combination of symptoms) shines brightly enough that it causes serious problems (ASD). In others it glows dimly enough that it doesn't get in the way (BAP). In others, it may shine not at all (NT). But a dim light and a bright light are both lights. Imagining the spectrum as a mere grayscale gradient obscures this fact, and leads IMO to some unnecessarily absolutist thinking about what it means to be "on the spectrum."
* This phrase has a distressing 22,000 Google hits. Removing the definite article takes it up to 26,000.
posted by shenderson at 9:37 PM on August 28, 2018 [18 favorites]
39 but I knew it was gonna be high. About 10 years ago a friend who is a psychologist asked if she could test me because she always thought I seemed autistic. So yes, an unofficial diagnosis that I have never cared to pursue further. But it did suggest a way to better cope with some of my lifelong unsocialized behaviors.
I applied intelligence and diligent study to pattern my behavior on people at work who are social and well liked. By watching and copying them, I have become much more socially acceptable. Some things, like using a phone, have never gotten any easier though. I have to laugh about the dislike of hair brushing in the article because I haven't brushed my hair since 1986. It's tangled and down to my feet.I have never cared at all that I look weird.
posted by a humble nudibranch at 11:19 PM on August 28, 2018 [1 favorite]
I applied intelligence and diligent study to pattern my behavior on people at work who are social and well liked. By watching and copying them, I have become much more socially acceptable. Some things, like using a phone, have never gotten any easier though. I have to laugh about the dislike of hair brushing in the article because I haven't brushed my hair since 1986. It's tangled and down to my feet.I have never cared at all that I look weird.
posted by a humble nudibranch at 11:19 PM on August 28, 2018 [1 favorite]
32. Which might perhaps explain why the world I live in has always been full of clueless fucking morons.
posted by flabdablet at 1:08 AM on August 29, 2018 [2 favorites]
posted by flabdablet at 1:08 AM on August 29, 2018 [2 favorites]
I don't have the time/energy to back this up with references but the story of the AQ is like: SB-C invented it (hence how unscientific it is, no shade intended - it's just most psychologists are super bad at developing clear-cut rating scales), and it's been shown to sort of broadly correlate with whether people are actually autistic or not (not that there's a clear line between), but it's not diagnostic. Psychologists still routinely use it as a like, rule of thumb when they're screening for autistics in a population they want to study (like proving to the reviewers of your paper that the people you've recruited who say they're autistic are, without having to call people up to verify diagnoses, which is also sometimes done). There are some great takedowns of the AQ online and I think it's been questioned in the scientific literature too. Basically it's still pretty useful despite being rubbish. Much as this thread bears out.
lokta, steeped in current autism research but a gestalt thinker with ADHD (and autism, obviously, just to be clear)
posted by lokta at 2:54 AM on August 29, 2018 [8 favorites]
lokta, steeped in current autism research but a gestalt thinker with ADHD (and autism, obviously, just to be clear)
posted by lokta at 2:54 AM on August 29, 2018 [8 favorites]
I don't talk about this much, but as long as everyone else is sharing...
I got 37. In a row? Undiagnosed, and yes, I know there's a lot of self-diagnosis out there, but c'mon. It's like someone went down a checklist when assembling me. Hyperverbal as a kid, unable to pick up on social nuances until I more or less trained myself to interact in my twenties, mild dyspraxia, auditory issues (especially with higher-pitched sounds), large head circumference, weirdly youthful appearance into middle age...come on.
posted by Mr. Bad Example at 4:52 AM on August 29, 2018 [8 favorites]
I got 37. In a row? Undiagnosed, and yes, I know there's a lot of self-diagnosis out there, but c'mon. It's like someone went down a checklist when assembling me. Hyperverbal as a kid, unable to pick up on social nuances until I more or less trained myself to interact in my twenties, mild dyspraxia, auditory issues (especially with higher-pitched sounds), large head circumference, weirdly youthful appearance into middle age...come on.
posted by Mr. Bad Example at 4:52 AM on August 29, 2018 [8 favorites]
A lot higher than I expected. Especially considering as I was doing the test I was thinking "Ha! I love fiction and can understand character motivations, just cos I love systems doesn't mean I'm like that". Prolonged human interaction with strangers is a large part of my job, and I like to think I'm good at it (although it exhausts me and I'm always happy to leave).
The article was insightful, particularly on the points about seeking diagnoses or not. The "official stamp" of a medical diagnosis, particularly with regards to educational institutions, can be problematic: required in order to get appropriate accommodations made, but also potentially limiting, both in terms of self-perception and in terms of how others treat you. I guess if schools were empowered to make accommodations based on behaviour, rather than requiring a doctor as intermediary, it might help with that.
posted by Wrinkled Stumpskin at 5:15 AM on August 29, 2018 [3 favorites]
The article was insightful, particularly on the points about seeking diagnoses or not. The "official stamp" of a medical diagnosis, particularly with regards to educational institutions, can be problematic: required in order to get appropriate accommodations made, but also potentially limiting, both in terms of self-perception and in terms of how others treat you. I guess if schools were empowered to make accommodations based on behaviour, rather than requiring a doctor as intermediary, it might help with that.
posted by Wrinkled Stumpskin at 5:15 AM on August 29, 2018 [3 favorites]
28, anxious introvert. I enjoy and am okay at social stuff, I just find that I prefer one-on-one types of socialising and thoroughly enjoy my time alone. Noise and touch worsen my anxiety but aren't the underlying cause of it. I don't really identify with the experiences of autism I've read here on MeFi and wouldn't want to claim even a cousinship or "adjacent" sort of label in case I contribute to the already-large misunderstandings of what autism is.
I have long thought that a friend and his wife were somewhere on the spectrum, and now all 3 of their children have been diagnosed with dyspraxia and/or autism. It's really lovely to see them make use of the supports available for their kids. The kids are learning coping strategies the parents had to spend years figuring out by themselves, and getting early practice in skills that don't come easily to them. But the parents are also teaching their kids how to find ways to enjoy their natural inclinations, by showing the fun and satisfaction a deep interest in a hobby or subject can bring to your life. He's into cars and computers, she's into cars and music, and both are very accomplished in their work and hobbies. I think this might be the most useful thing they do to help, to show by their actions that being intensely focused on a thing is a kind of superpower with benefits as well as drawbacks.
posted by harriet vane at 5:29 AM on August 29, 2018 [4 favorites]
I have long thought that a friend and his wife were somewhere on the spectrum, and now all 3 of their children have been diagnosed with dyspraxia and/or autism. It's really lovely to see them make use of the supports available for their kids. The kids are learning coping strategies the parents had to spend years figuring out by themselves, and getting early practice in skills that don't come easily to them. But the parents are also teaching their kids how to find ways to enjoy their natural inclinations, by showing the fun and satisfaction a deep interest in a hobby or subject can bring to your life. He's into cars and computers, she's into cars and music, and both are very accomplished in their work and hobbies. I think this might be the most useful thing they do to help, to show by their actions that being intensely focused on a thing is a kind of superpower with benefits as well as drawbacks.
posted by harriet vane at 5:29 AM on August 29, 2018 [4 favorites]
large head circumference, weirdly youthful appearance into middle age
Oh, are those tells too? Yay, more to add to the list...
posted by gusottertrout at 5:30 AM on August 29, 2018 [4 favorites]
Oh, are those tells too? Yay, more to add to the list...
posted by gusottertrout at 5:30 AM on August 29, 2018 [4 favorites]
That was beautifully written; and I totally agree with her. Well argued too with regards to whether a clinical diagnoses would do anything for her. I wonder about myself, but on the whole I cope OK so how important is it really to slap a clinical label on whatever issues I have. And I love this quote:
The world could quickly teach her which parts of her are valuable to it. My job is to not let her believe them.
posted by diziet at 5:54 AM on August 29, 2018
The world could quickly teach her which parts of her are valuable to it. My job is to not let her believe them.
posted by diziet at 5:54 AM on August 29, 2018
i got 21, which indicates low to no autistic traits.
but i've found learning about autistic experiences (from autistic people, usually not straight autistic men) really useful in managing the world. i used to see my difficulties with socialising or low mood in terms of depression or not making enough effort, and that i could kind of 'cbt' or try my way out of it. now i focus on managing sensory overload by for instance using headphones or taking breaks or meeting people in places where i won't be overwhelmed by the noise and busyness. i don't really bother as much with trying to make friends with neurotypical people as they often seem to not like me, and put more effort into friendships with people who are more accepting and just enjoying spending time on my own.
posted by mosswinter at 5:54 AM on August 29, 2018
but i've found learning about autistic experiences (from autistic people, usually not straight autistic men) really useful in managing the world. i used to see my difficulties with socialising or low mood in terms of depression or not making enough effort, and that i could kind of 'cbt' or try my way out of it. now i focus on managing sensory overload by for instance using headphones or taking breaks or meeting people in places where i won't be overwhelmed by the noise and busyness. i don't really bother as much with trying to make friends with neurotypical people as they often seem to not like me, and put more effort into friendships with people who are more accepting and just enjoying spending time on my own.
posted by mosswinter at 5:54 AM on August 29, 2018
Welp, I think I need to take that test again in a few weeks. I just ran through it really quickly and got 39/50.
posted by diziet at 6:02 AM on August 29, 2018
posted by diziet at 6:02 AM on August 29, 2018
I scored a 3. I'm an extrovert. I can't remember birthdays and I enjoy social chitchat.
Hate making phone calls though. Phone calls can go screw themselves.
posted by coffeepot at 6:22 AM on August 29, 2018
Hate making phone calls though. Phone calls can go screw themselves.
posted by coffeepot at 6:22 AM on August 29, 2018
So I kinda regret tagging this post with ASQ, which may have contributed to turning it into an ASQ-fest. The scale (and Simon Baron-Cohen's models of autism more generally, as well noted by shenderson) are controversial among researchers (and people with autism) and I hope no one treats their score as the definitive measure of the intensity of their autistic traits.
Many of the author's personal experiences resonated with mine. I definitely want to figure out how I can use my own experiences to guide my son through a world that as yet does not understand him. I have to admit I envy those for whom a diagnosis (or even self-labeling) leads to greater self-acceptance; that's the kind of healthy attitude that I don't have yet.
posted by a snickering nuthatch at 6:31 AM on August 29, 2018 [6 favorites]
Many of the author's personal experiences resonated with mine. I definitely want to figure out how I can use my own experiences to guide my son through a world that as yet does not understand him. I have to admit I envy those for whom a diagnosis (or even self-labeling) leads to greater self-acceptance; that's the kind of healthy attitude that I don't have yet.
posted by a snickering nuthatch at 6:31 AM on August 29, 2018 [6 favorites]
Interesting. I talked about this quiz with my wife tonight (who scored 3), and she suggested that the environment in which the questions were asked might impact the answers given. She encouraged me to take it again, through her as a filter, asking me additional sub-questions. I scored 22. So maybe I just have Occupational Asperger's.
posted by MarchHare at 6:34 AM on August 29, 2018
posted by MarchHare at 6:34 AM on August 29, 2018
I got 21. My partner (a teacher) has said in the past he reckons I have some autism-like traits, but frankly I've never really agreed, because I'm pretty sure my problem is ADD and social anxiety (which will have raised my score because obviously I prefer the library to parties and don't like meeting new people). But as an adult who has never been diagnosed with anything, I just carry on because it's unlikely a diagnosis will change anything, I can empathise with that.
posted by stillnocturnal at 6:51 AM on August 29, 2018 [1 favorite]
posted by stillnocturnal at 6:51 AM on August 29, 2018 [1 favorite]
So what is used in practice for diagnosis? Is there a section of the SCID for autism?
I’ve often wondered if I would have been given an ASD diagnosis if I’d been a child in the 2000s instead of in the 1980s. I was quirky in some of the ways I associate with ASD; and there are still some social things that I think are harder for me than for other people. But I don’t think I’d read as ASD to a clinician today.
I’ve seen some ASD like traits in some of my immediate family members as well. I wonder how our understanding of ASD heritability will change as our understanding of the disorder and the broader phenotype changes. Here is an open access article that seems relevant.
posted by eirias at 7:19 AM on August 29, 2018
I’ve often wondered if I would have been given an ASD diagnosis if I’d been a child in the 2000s instead of in the 1980s. I was quirky in some of the ways I associate with ASD; and there are still some social things that I think are harder for me than for other people. But I don’t think I’d read as ASD to a clinician today.
I’ve seen some ASD like traits in some of my immediate family members as well. I wonder how our understanding of ASD heritability will change as our understanding of the disorder and the broader phenotype changes. Here is an open access article that seems relevant.
posted by eirias at 7:19 AM on August 29, 2018
26-31. Who knows. Oddly, a work friend who’s very vocal about being autistic just shared a radio interview with Reese Piper, a writer who talks about autism, stripping, how social camoflaging and gender roles affect presentation, and I spent the entire show on the verge of tears.
posted by moonlight on vermont at 7:37 AM on August 29, 2018 [2 favorites]
posted by moonlight on vermont at 7:37 AM on August 29, 2018 [2 favorites]
24. I'm pretty sure I'm not autistic and no one has ever suggested I am, but I've always wondered of I was on the line because I definitely have many traits in common. Maybe? Or maybe they're a product of something else.
posted by UltraMorgnus at 8:23 AM on August 29, 2018 [1 favorite]
posted by UltraMorgnus at 8:23 AM on August 29, 2018 [1 favorite]
34, and when I'm trying to think, any sound can ruin my concentration for many minutes, and a few of those in a row put me in a rage state, scream-swearing and feeling the blood pound in my face. Good thing I work at home because modern open-offices are torture for me.
Sometimes I can work in a coffee shop (as a programmer, duh) as long as I can convince myself that nothing anyone there is saying could possibly relate to my work.
Socially, it's exactly what shadenfrau said:
posted by alpheus at 8:53 AM on August 29, 2018
Sometimes I can work in a coffee shop (as a programmer, duh) as long as I can convince myself that nothing anyone there is saying could possibly relate to my work.
Socially, it's exactly what shadenfrau said:
So I guess I can pass, for the most part. It just exhausts the shit out of me.Never been diagnosed autistic but I do have bipolar disorder and take medication for it and there's probably no reason someone can't have both.
posted by alpheus at 8:53 AM on August 29, 2018
27.
I always knew I was slightly different from others, and had major problems making friends as a child. It might be a failure of my parents, who never took me to playgroups and other settings to socialize as a child.
Where I "failed" in the test was all the questions regarding stories and fiction and imagination! I love writing stories and reading stories. Introvert, I am. I'm pretty sure I picked up reading as a coping mechanism for not being able to interact with real people. If it wasn't for that, I would have a lot higher score.
posted by moiraine at 9:09 AM on August 29, 2018 [4 favorites]
I always knew I was slightly different from others, and had major problems making friends as a child. It might be a failure of my parents, who never took me to playgroups and other settings to socialize as a child.
Where I "failed" in the test was all the questions regarding stories and fiction and imagination! I love writing stories and reading stories. Introvert, I am. I'm pretty sure I picked up reading as a coping mechanism for not being able to interact with real people. If it wasn't for that, I would have a lot higher score.
posted by moiraine at 9:09 AM on August 29, 2018 [4 favorites]
I got a 30 and have an actual diagnosis. I received it a couple of years ago, after a several-month shutdown in response to a zillion midlife stressors all at once, which left me searching for help and answers.
In retrospect, 11-year-old me was so blatantly autistic in 1981(hand flapping, sensory overwhelm, social issues, hyperlexia) that it's likely a rando off the street from 2018 would have been able to call it.
posted by mneekadon at 9:50 AM on August 29, 2018 [2 favorites]
In retrospect, 11-year-old me was so blatantly autistic in 1981(hand flapping, sensory overwhelm, social issues, hyperlexia) that it's likely a rando off the street from 2018 would have been able to call it.
posted by mneekadon at 9:50 AM on August 29, 2018 [2 favorites]
30, sure it would have been higher as a child, and also sure that if more sensory items were on there I'd score higher.
But I have no interest in a diagnosis as an adult, because my adult life (mostly) doesn't involve the things I can't handle (I can't talk on the phone if I can't see someone, because I can't hear feelings; but I can *see* them, so video conferencing is fine -- and this is 2018 so it's everywhere). Also I'm an academic, where the open office craze hasn't yet hit as strongly, so I have my own office. And I'm surrounded by people obsessed with some of the same stuff I am. I've got hyperfocus but that's *useful* for an academic of my sort. So, am I neurodivergent? Maybe, but to the extent I am, it's adaptive in my current environment so I have no intention of doing anything about it.
That having been said, I don't have kids, and I do worry about any potential ones-- both my family and Mr. Nat's have these traits, and the world is not kind to those who don't fit.
posted by nat at 10:18 AM on August 29, 2018
But I have no interest in a diagnosis as an adult, because my adult life (mostly) doesn't involve the things I can't handle (I can't talk on the phone if I can't see someone, because I can't hear feelings; but I can *see* them, so video conferencing is fine -- and this is 2018 so it's everywhere). Also I'm an academic, where the open office craze hasn't yet hit as strongly, so I have my own office. And I'm surrounded by people obsessed with some of the same stuff I am. I've got hyperfocus but that's *useful* for an academic of my sort. So, am I neurodivergent? Maybe, but to the extent I am, it's adaptive in my current environment so I have no intention of doing anything about it.
That having been said, I don't have kids, and I do worry about any potential ones-- both my family and Mr. Nat's have these traits, and the world is not kind to those who don't fit.
posted by nat at 10:18 AM on August 29, 2018
sure it would have been higher as a child, and also sure that if more sensory items were on there I'd score higher.
Seconding the sensory items bit. And thirding if you’ll let me.
Just for fun I took it again as “child me,” who got a 42.
posted by schadenfrau at 10:35 AM on August 29, 2018
Seconding the sensory items bit. And thirding if you’ll let me.
Just for fun I took it again as “child me,” who got a 42.
posted by schadenfrau at 10:35 AM on August 29, 2018
Getting an official diagnosis or not is a personal choice and I think it's great that many people have made peace with theirs.
This is just one person's perspective, but it would mean a lot to me if my mother got a diagnosis. Being a kid was preventably confusing and involved a lot of unintentional neglect and accidental gaslighting. All the adults around me excused her strange behaviour as "quirky". To this day, I struggle with unknowns, with doubt, with trusting my interpretations of situations.
A diagnosis wouldn't change all that, but it'd be validating af. If it was acknowledged then, I think I could have been more compassionate. Maybe even helped. It'd be better late than never.
It took a lot of time and therapy to grieve for that hope.
posted by iamkimiam at 10:48 AM on August 29, 2018 [9 favorites]
This is just one person's perspective, but it would mean a lot to me if my mother got a diagnosis. Being a kid was preventably confusing and involved a lot of unintentional neglect and accidental gaslighting. All the adults around me excused her strange behaviour as "quirky". To this day, I struggle with unknowns, with doubt, with trusting my interpretations of situations.
A diagnosis wouldn't change all that, but it'd be validating af. If it was acknowledged then, I think I could have been more compassionate. Maybe even helped. It'd be better late than never.
It took a lot of time and therapy to grieve for that hope.
posted by iamkimiam at 10:48 AM on August 29, 2018 [9 favorites]
I think it would validate my parents if I got a diagnosis of some kind, so that they know it wasn't their fault. It wasn't because they were bad parents that I would have a meltdown if my clothes touched me a certain way, for instance.
posted by tofu_crouton at 10:57 AM on August 29, 2018 [4 favorites]
posted by tofu_crouton at 10:57 AM on August 29, 2018 [4 favorites]
Oh my god, fucking elastic.
And the seams on socks? BURN ALL SOCKS WITH SEAMS.
Turtle necks were first invented by the Inquisition, I’m pretty sure.
posted by schadenfrau at 11:28 AM on August 29, 2018 [6 favorites]
And the seams on socks? BURN ALL SOCKS WITH SEAMS.
Turtle necks were first invented by the Inquisition, I’m pretty sure.
posted by schadenfrau at 11:28 AM on August 29, 2018 [6 favorites]
I used to turn all my socks inside out because of the seams! I'm not sure when that stopped.
posted by showbiz_liz at 11:30 AM on August 29, 2018 [3 favorites]
posted by showbiz_liz at 11:30 AM on August 29, 2018 [3 favorites]
39. By jingo! That's why nothing makes any sense.
posted by HandfulOfDust at 11:32 AM on August 29, 2018 [3 favorites]
posted by HandfulOfDust at 11:32 AM on August 29, 2018 [3 favorites]
From reading this thread, I think the author of the article may be conflating autism with introversion.
posted by SPrintF at 11:32 AM on August 29, 2018 [1 favorite]
posted by SPrintF at 11:32 AM on August 29, 2018 [1 favorite]
So what is used in practice for diagnosis? Is there a section of the SCID for autism?
I can speak to this as of about eight years ago; I'm now working in a different field, so I'm not 100% up to date on the very latest in diagnostic thinking. But for what it's worth: Around that time, I was working in an autism research lab, where we did diagnostic testing for children and adults. I'll focus on the adult dx here since it seems most relevant. We did the ADOS and ADI (more in a sec on that), which at the time were the "gold standard" of diagnostic testing IF you had all the money and time in the world. It was my understanding that clinical diagnoses rarely did those tests in full or at all, because of the "all the money and time in the world" thing, but would do shortened versions of one or both, as well as shorter questionnaires and just talking with patients about their symptoms and experiences. Our short-form screening questionnaire that we did before deciding whether to invest all the time (ours, and the participant's) in the full screening battery was a combination of the Social Communications Questionnaire and a screening questionnaire of our own devising with a lot more open-ended questions about current and childhood development, interests, friendships, behaviors, etc. If there was enough there to support a possible diagnosis, we did the full battery.
I was never trained to administer the ADOS, so I can't speak about it in detail. I do know that in an adult it's structured as a conversation, possibly with a few tasks/puzzles mixed in, but I think those were more for children. The administrator talks with the person about their lives, their routines, their relationships with family and friends and partners, things they like and don't like, etc. The person giving the exam is observing responses but also verbal and physical behaviors. There's a detailed scoring rubric on several different scales, and anyone administering this test has to keep up ongoing cross-training with others who also administer the test to be sure that no one drifts off too far on their own and starts scoring differently from other people who administer the ADOS. The ADOS takes about 45 minutes with an adult and isn't usually upsetting or difficult for the person being tested, but is sometimes boring or annoying.
The ADI is an interview about the person, rather than with the person. In a perfect situation, you administer the ADI with a single person who knew the autistic person well as a child and also as an adult, so you can ask about current and past behaviors. Often in practice that's not possible so you use two different people, or you administer only the current part, and supplement with e.g. school or doctor's records from childhood if available. The full ADI takes about 90 minutes to 2 hours. It covers a lot of the same ground as the ADOS but covering childhood as well as current behavior. It also has an emphasis on functionality - you score differently for someone who has an intense special interest that interferes with basic life stuff like sleeping and eating, vs. someone who has an intense special interest but it's not affecting their life functioning in any serious way - that I'm not sure the ADOS has. (But I might just not know enough about the ADOS.)
In both tests you have cutoff scores and sort of "area of concern but not quite as high as the cutoff" scores, in a variety of different areas - repetitive behaviors, social interactions, language development, all the stuff you'd expect. Sometimes scoring's easy - high or low scores across the board - and sometimes you get someone with a mixed bag, high in some areas and low in others, and that's when we would send the files on to our clinical psychiatrists to make a judgment call, often after talking with the person again.
All of THAT said, I worked in that lab for a solid five years or so, and it was never suggested that I might have any sort of autism spectrum disorder, and I'm moderately convinced that I'm on the spectrum in a subclinical sense , and that my biological father is full-on Aspie, so maybe those folks didn't actually know their shit. Or maybe I'm pretty good at compensating (I am), and also they were trying to be professional and not run around diagnosing their coworkers. Who knows? Not me.
posted by Stacey at 11:34 AM on August 29, 2018 [7 favorites]
I can speak to this as of about eight years ago; I'm now working in a different field, so I'm not 100% up to date on the very latest in diagnostic thinking. But for what it's worth: Around that time, I was working in an autism research lab, where we did diagnostic testing for children and adults. I'll focus on the adult dx here since it seems most relevant. We did the ADOS and ADI (more in a sec on that), which at the time were the "gold standard" of diagnostic testing IF you had all the money and time in the world. It was my understanding that clinical diagnoses rarely did those tests in full or at all, because of the "all the money and time in the world" thing, but would do shortened versions of one or both, as well as shorter questionnaires and just talking with patients about their symptoms and experiences. Our short-form screening questionnaire that we did before deciding whether to invest all the time (ours, and the participant's) in the full screening battery was a combination of the Social Communications Questionnaire and a screening questionnaire of our own devising with a lot more open-ended questions about current and childhood development, interests, friendships, behaviors, etc. If there was enough there to support a possible diagnosis, we did the full battery.
I was never trained to administer the ADOS, so I can't speak about it in detail. I do know that in an adult it's structured as a conversation, possibly with a few tasks/puzzles mixed in, but I think those were more for children. The administrator talks with the person about their lives, their routines, their relationships with family and friends and partners, things they like and don't like, etc. The person giving the exam is observing responses but also verbal and physical behaviors. There's a detailed scoring rubric on several different scales, and anyone administering this test has to keep up ongoing cross-training with others who also administer the test to be sure that no one drifts off too far on their own and starts scoring differently from other people who administer the ADOS. The ADOS takes about 45 minutes with an adult and isn't usually upsetting or difficult for the person being tested, but is sometimes boring or annoying.
The ADI is an interview about the person, rather than with the person. In a perfect situation, you administer the ADI with a single person who knew the autistic person well as a child and also as an adult, so you can ask about current and past behaviors. Often in practice that's not possible so you use two different people, or you administer only the current part, and supplement with e.g. school or doctor's records from childhood if available. The full ADI takes about 90 minutes to 2 hours. It covers a lot of the same ground as the ADOS but covering childhood as well as current behavior. It also has an emphasis on functionality - you score differently for someone who has an intense special interest that interferes with basic life stuff like sleeping and eating, vs. someone who has an intense special interest but it's not affecting their life functioning in any serious way - that I'm not sure the ADOS has. (But I might just not know enough about the ADOS.)
In both tests you have cutoff scores and sort of "area of concern but not quite as high as the cutoff" scores, in a variety of different areas - repetitive behaviors, social interactions, language development, all the stuff you'd expect. Sometimes scoring's easy - high or low scores across the board - and sometimes you get someone with a mixed bag, high in some areas and low in others, and that's when we would send the files on to our clinical psychiatrists to make a judgment call, often after talking with the person again.
All of THAT said, I worked in that lab for a solid five years or so, and it was never suggested that I might have any sort of autism spectrum disorder, and I'm moderately convinced that I'm on the spectrum in a subclinical sense , and that my biological father is full-on Aspie, so maybe those folks didn't actually know their shit. Or maybe I'm pretty good at compensating (I am), and also they were trying to be professional and not run around diagnosing their coworkers. Who knows? Not me.
posted by Stacey at 11:34 AM on August 29, 2018 [7 favorites]
introversion and autism are not the same; in the same way that you can be extroverted and shy, you can also be extroverted and autistic.
posted by bq at 11:47 AM on August 29, 2018 [6 favorites]
posted by bq at 11:47 AM on August 29, 2018 [6 favorites]
25. Which is just about typical for me--the problem being that half the time I could put agree slightly and half the time I could put disagree slightly. I actually fussed over some of the answers, then went back and changed them (usually to reflect more positively.) I think my score would have higher when I was younger.
Maybe it's because I'm bipolar, or maybe it's just because I'm a Gemini. All you other 25? Are you a Gemini, too? I can't make up my mind if this might be a real thing... because...
I can't make up my mind, as usual.
posted by BlueHorse at 2:05 PM on August 29, 2018 [1 favorite]
Maybe it's because I'm bipolar, or maybe it's just because I'm a Gemini. All you other 25? Are you a Gemini, too? I can't make up my mind if this might be a real thing... because...
I can't make up my mind, as usual.
posted by BlueHorse at 2:05 PM on August 29, 2018 [1 favorite]
I see the thread has circled around to the topic of diagnosis. My heart is rather full on this subject at the moment, so I would like to add my personal thoughts and experiences. Please forgive the failure of brevity.
1. Why an autism diagnosis is important to me, personally
Obviously, if "I am autistic" carries no use-value, "I believe I am autistic because I have been diagnosed" will have no use-value either. For this reason, although I've suspected myself of autism for most of my life, I never had much motivation to look into it. I didn't see how using the word "autism" would tell me anything about myself that I didn't already know firsthand.
But in recent years I've come to recognize that understanding myself in autistic terms is crucial to really seeing what's going on in my life -- for example, that I don't keep failing to connect with people because I'm just not trying or don't want to (which I spent most of my life saying, even as I desperately wished I could connect with people), but because there are specific, knowable obstacles in my path that I have to learn how to navigate around. When I came to understand that "autism" is not just a word that describes my life but one that provides important additional information, I felt like a bird finally learning what a "window" is after crashing to the windowsill for the twentieth time.
As to diagnosis: I know that I am not at all unique among, err, possibly-autistic people in having serious problems with observing and regulating my internal states. Anger, sadness, fatigue, excitement -- all have a way of reaching unmanageable dimensions before I am even aware of them. My inability to accurately evaluate internal states naturally makes me wary of my ability to make conclusions that are ultimately based on those internal evaluations. How can I be sure that what I think I experience in sensory, social, or rigidity terms is not merely a product of my own confusion over what's happening in my brain? While recognizing the ultimate unanswerability of that question, I need *some* kind of objective/external reference point before I can really be confident that I am not just confusing myself again. That's probably the main reason I want a "real" diagnosis.
In addition, while I would very much like to engage with the various autism/self-advocacy groups that are doing important work in and around City, I am quite aware of the (well-founded) suspicion and/or hostility with which many autistic people view the self-diagnosed. The though of engaging with a group of random strangers, who may or may not regard me as one of them, and with whom I may or may not turn out to have anything substantial in common, is terrifying enough. Without some sort of credential in hand, there's no way in Hell I'm trying it.
2. My recent experience seeking a diagnosis
I live near [Major American City] in the northern US. A few weeks ago, after dithering over this for several years, I finally broke through my resistance and set up an appointment for an initial interview regarding an adult autism diagnosis, with a behavioral health clinic at [Reputable Institution] that ostensibly offers such services.
I should preface this by saying that, for some reason (maybe autism-linked, maybe not), although I am an older cishet white guy with all the privileges thereunto appertaining, I typically do not get those privileges in a spoken conversation. Rather, I have always tended to get the kind of treatment that women and minorities are infamously subject to -- I am talked over, my contributions are ignored or attributed to someone else, I am frequently told that I "have a nice smile" and "should smile more" (seriously, this happened constantly when I was younger, and remains bizarrely common now that I'm old and grouchy). Not unrelatedly, I constantly struggle with imposter syndrome. I raise these points only for context; obviously I still have it pretty good in American society.
I've read a lot of accounts of the experiences that adult women have in seeking an autism diagnosis, but I'll admit I wasn't really expecting things to go that badly. I knew there would be challenges and obstacles, but I figured I would at least get a fair hearing, and -- if I weren't autistic -- some reasoned explanation of why they reached that conclusion.
The following are some notable highlights of my several-hours-long experience in an initial consultation at Reputable Institution:
- I was allowed to finish much less than half of the sentences I started.
- I was never given time to describe any of the major reasons why I believe I am autistic.
- My motives for seeking a diagnosis were unremittingly questioned, with the repeated suggestion that I was motivated by some celebrity having a diagnosis. (I don't follow pop culture closely enough to know what this was about.)
- The few things I was allowed to get in edgewise were immediately dismissed as not necessarily indicating autism (unsurprisingly, since of course there is no one symptom that unambiguously indicates autism -- although you'd think that e.g. needing to pace and vocalize in order to adequately process new information, to the point where your life is substantially structured around finding ways to do that without attracting attention, would be a tiny bit of a hint).
- Even though I had my first suspicions of autism when I came across descriptions of the condition in childhood; had my first "holy crap, these are my people" moment when hearing an Aspie talk about NTs on NPR sometime around 2000; and finally realized that not only was I (probably) autistic, but this was really important and actionable information to have, after some extremely difficult real-life experiences a few years ago -- one of the interviewers, after going on at some length about why (in her view) I probably wasn't autistic, strongly implied that I had self-diagnosed by Googling.
- The specialist I initially spoke to over the phone told me that hyposensitivity to cold (I only gave up my youthful winter uniform of T-shirt and shorts after resigning myself to the fact that people will NEVER STOP being super weird about it, and it's just not a fight worth having) is not indicative of autism, and that actually autistic people would be hypersensitive to cold. This is false: both are potentially indicative, and indeed hyposensitivity is slightly more common. At the time, I honestly thought she was just testing me -- seeing if I would change my story when fed inaccurate information -- but it became apparent in the in-person interview that neither of the interviewers had any rigorous understanding of autism at all, and were making their judgments based largely on their personal sense of whether I "seemed autistic."
- I was given a screening questionnaire that consisted mostly of questions like "how often do you fail to understand others?" Despite the obvious epistemological problems, I gave it my best shot. But my score was much higher than the specialist thought it should be, so she disregarded it.
- During the consultation, one of the specialists literally told me (apropos of nothing whatsoever) that I had a nice smile.
I don't expect I'll be going back. But this raises some serious questions in my mind about diagnoses in general, and particularly the shibboleth that "autism can only be diagnosed by a professional." If Reputable Institution is this much of a shitshow, it doesn't seem like there are any real professional standards in the field at all. But if I simply hop from one institution to another until someone relents and gives me a diagnosis -- which I know many autistic women in particular have been forced to do -- what validity does that diagnosis really have?
(using a sockpuppet account because leaving a permanent, easily-traceable online record of my experiences on this point seems potentially unwise)
posted by CauldBlawsTheWind at 2:09 PM on August 29, 2018 [25 favorites]
1. Why an autism diagnosis is important to me, personally
Obviously, if "I am autistic" carries no use-value, "I believe I am autistic because I have been diagnosed" will have no use-value either. For this reason, although I've suspected myself of autism for most of my life, I never had much motivation to look into it. I didn't see how using the word "autism" would tell me anything about myself that I didn't already know firsthand.
But in recent years I've come to recognize that understanding myself in autistic terms is crucial to really seeing what's going on in my life -- for example, that I don't keep failing to connect with people because I'm just not trying or don't want to (which I spent most of my life saying, even as I desperately wished I could connect with people), but because there are specific, knowable obstacles in my path that I have to learn how to navigate around. When I came to understand that "autism" is not just a word that describes my life but one that provides important additional information, I felt like a bird finally learning what a "window" is after crashing to the windowsill for the twentieth time.
As to diagnosis: I know that I am not at all unique among, err, possibly-autistic people in having serious problems with observing and regulating my internal states. Anger, sadness, fatigue, excitement -- all have a way of reaching unmanageable dimensions before I am even aware of them. My inability to accurately evaluate internal states naturally makes me wary of my ability to make conclusions that are ultimately based on those internal evaluations. How can I be sure that what I think I experience in sensory, social, or rigidity terms is not merely a product of my own confusion over what's happening in my brain? While recognizing the ultimate unanswerability of that question, I need *some* kind of objective/external reference point before I can really be confident that I am not just confusing myself again. That's probably the main reason I want a "real" diagnosis.
In addition, while I would very much like to engage with the various autism/self-advocacy groups that are doing important work in and around City, I am quite aware of the (well-founded) suspicion and/or hostility with which many autistic people view the self-diagnosed. The though of engaging with a group of random strangers, who may or may not regard me as one of them, and with whom I may or may not turn out to have anything substantial in common, is terrifying enough. Without some sort of credential in hand, there's no way in Hell I'm trying it.
2. My recent experience seeking a diagnosis
I live near [Major American City] in the northern US. A few weeks ago, after dithering over this for several years, I finally broke through my resistance and set up an appointment for an initial interview regarding an adult autism diagnosis, with a behavioral health clinic at [Reputable Institution] that ostensibly offers such services.
I should preface this by saying that, for some reason (maybe autism-linked, maybe not), although I am an older cishet white guy with all the privileges thereunto appertaining, I typically do not get those privileges in a spoken conversation. Rather, I have always tended to get the kind of treatment that women and minorities are infamously subject to -- I am talked over, my contributions are ignored or attributed to someone else, I am frequently told that I "have a nice smile" and "should smile more" (seriously, this happened constantly when I was younger, and remains bizarrely common now that I'm old and grouchy). Not unrelatedly, I constantly struggle with imposter syndrome. I raise these points only for context; obviously I still have it pretty good in American society.
I've read a lot of accounts of the experiences that adult women have in seeking an autism diagnosis, but I'll admit I wasn't really expecting things to go that badly. I knew there would be challenges and obstacles, but I figured I would at least get a fair hearing, and -- if I weren't autistic -- some reasoned explanation of why they reached that conclusion.
The following are some notable highlights of my several-hours-long experience in an initial consultation at Reputable Institution:
- I was allowed to finish much less than half of the sentences I started.
- I was never given time to describe any of the major reasons why I believe I am autistic.
- My motives for seeking a diagnosis were unremittingly questioned, with the repeated suggestion that I was motivated by some celebrity having a diagnosis. (I don't follow pop culture closely enough to know what this was about.)
- The few things I was allowed to get in edgewise were immediately dismissed as not necessarily indicating autism (unsurprisingly, since of course there is no one symptom that unambiguously indicates autism -- although you'd think that e.g. needing to pace and vocalize in order to adequately process new information, to the point where your life is substantially structured around finding ways to do that without attracting attention, would be a tiny bit of a hint).
- Even though I had my first suspicions of autism when I came across descriptions of the condition in childhood; had my first "holy crap, these are my people" moment when hearing an Aspie talk about NTs on NPR sometime around 2000; and finally realized that not only was I (probably) autistic, but this was really important and actionable information to have, after some extremely difficult real-life experiences a few years ago -- one of the interviewers, after going on at some length about why (in her view) I probably wasn't autistic, strongly implied that I had self-diagnosed by Googling.
- The specialist I initially spoke to over the phone told me that hyposensitivity to cold (I only gave up my youthful winter uniform of T-shirt and shorts after resigning myself to the fact that people will NEVER STOP being super weird about it, and it's just not a fight worth having) is not indicative of autism, and that actually autistic people would be hypersensitive to cold. This is false: both are potentially indicative, and indeed hyposensitivity is slightly more common. At the time, I honestly thought she was just testing me -- seeing if I would change my story when fed inaccurate information -- but it became apparent in the in-person interview that neither of the interviewers had any rigorous understanding of autism at all, and were making their judgments based largely on their personal sense of whether I "seemed autistic."
- I was given a screening questionnaire that consisted mostly of questions like "how often do you fail to understand others?" Despite the obvious epistemological problems, I gave it my best shot. But my score was much higher than the specialist thought it should be, so she disregarded it.
- During the consultation, one of the specialists literally told me (apropos of nothing whatsoever) that I had a nice smile.
I don't expect I'll be going back. But this raises some serious questions in my mind about diagnoses in general, and particularly the shibboleth that "autism can only be diagnosed by a professional." If Reputable Institution is this much of a shitshow, it doesn't seem like there are any real professional standards in the field at all. But if I simply hop from one institution to another until someone relents and gives me a diagnosis -- which I know many autistic women in particular have been forced to do -- what validity does that diagnosis really have?
(using a sockpuppet account because leaving a permanent, easily-traceable online record of my experiences on this point seems potentially unwise)
posted by CauldBlawsTheWind at 2:09 PM on August 29, 2018 [25 favorites]
Large head circumference, you say? Guy with hydrocephalus checking in. I never would have thought of head circumference as some kind of autism tell.
posted by emelenjr at 2:22 PM on August 29, 2018 [2 favorites]
posted by emelenjr at 2:22 PM on August 29, 2018 [2 favorites]
I never would have thought of head circumference as some kind of autism tell.
It's a thing I found out about reading one of Simon Baron-Cohen's books years ago. Apparently a larger head isn't always present or an indicator, but it happens often enough that there have been studies.
posted by Mr. Bad Example at 2:39 PM on August 29, 2018 [2 favorites]
It's a thing I found out about reading one of Simon Baron-Cohen's books years ago. Apparently a larger head isn't always present or an indicator, but it happens often enough that there have been studies.
posted by Mr. Bad Example at 2:39 PM on August 29, 2018 [2 favorites]
I don't know, I got a 33. I am a ridiculously good copy-editor, if I do say so myself, have mad pattern-recognition skills, and have stuff like this. My mother apparently wondered if I had some kind of spectrum situation at various points when I was a kid for a few reasons, but no one's ever really looked into it further. All kinds of stuff goes along with being a couple or a few standard deviations above the mean that could be confounding factors in all of this. I'm a dark weirdo for sure. Being a human is pretty interesting all around!
posted by limeonaire at 7:28 PM on August 29, 2018
posted by limeonaire at 7:28 PM on August 29, 2018
I thought the questions slanted hard towards math and against stories, and somehow I scored 35 anyway. (Fiction is great! Fictional people often make sense, and it's usually considered bad writing when they don't! And I organize data for a living, but that doesn't require numbers or math.)
I don't have a diagnosis, and don't plan to seek one. Getting a diagnosis and interventions as a child or teenager would have been life-changing - I spent a lot of years flailing and miserable. But by the time I started running into stories and symptoms that sounded familiar, I had lucked my way into a life I like.
And the requirement of interviewing someone about your childhood gives me a lot of pause. The only adults who knew me for any length of time as a child are my parents, who would absolutely take the questioning as a personal judgment. If it would have a practical use, like accommodations at work, I'd probably go for it. But the possibility of putting a name to a face is not quite worth it.
posted by mersen at 8:13 PM on August 29, 2018 [3 favorites]
I don't have a diagnosis, and don't plan to seek one. Getting a diagnosis and interventions as a child or teenager would have been life-changing - I spent a lot of years flailing and miserable. But by the time I started running into stories and symptoms that sounded familiar, I had lucked my way into a life I like.
And the requirement of interviewing someone about your childhood gives me a lot of pause. The only adults who knew me for any length of time as a child are my parents, who would absolutely take the questioning as a personal judgment. If it would have a practical use, like accommodations at work, I'd probably go for it. But the possibility of putting a name to a face is not quite worth it.
posted by mersen at 8:13 PM on August 29, 2018 [3 favorites]
42, and 165 on the RAADS. I don't think I have the financial or emotional means to get a diagnosis at this point, although I do want one. (It's definitely not happening if they need to talk to my parents.) My parents needed to have "normal" kids, but my feelings about that are tempered by the fact that I probably wouldn't have been diagnosed properly anyway even if they'd tried (Asian girl, small town, 80s). I've learned how to pass more or less as awkward-but-neurotypical, but it's exhausting.
When I do read about symptoms and other folks' experiences I feel both validated and sad. On one hand, it's been empowering to develop a vocabulary around the way I experience the world, and to describe how I experienced as a child, and why. (And I think I have the Blue to thank for pointing me in that direction a million lurking years ago.) But this validation is inextricable from a sense of loss. I've sanded down some things irretrievably because I learned the hard way that Making Neurotypical People Uncomfortable Ends Badly and for years my primary directive was to avoid that, and now there are just...gaps where parts of me used to be. Like I guess I'd hoped that a neurotypical part would magically appear if I just cleared space for it but instead I'm this collection of half-deconstructed parts.
As I've rediscovered these parts, I do find myself less willing to reshape myself to make other people feel better. It's probably not doing me any favors at the office, but then neither did my inability to grasp the purpose or technique of networking. Even if I never get that diagnosis I can at least feel a little closer to the things that make me me.
posted by Fish, fish, are you doing your duty? at 12:14 AM on August 30, 2018 [11 favorites]
When I do read about symptoms and other folks' experiences I feel both validated and sad. On one hand, it's been empowering to develop a vocabulary around the way I experience the world, and to describe how I experienced as a child, and why. (And I think I have the Blue to thank for pointing me in that direction a million lurking years ago.) But this validation is inextricable from a sense of loss. I've sanded down some things irretrievably because I learned the hard way that Making Neurotypical People Uncomfortable Ends Badly and for years my primary directive was to avoid that, and now there are just...gaps where parts of me used to be. Like I guess I'd hoped that a neurotypical part would magically appear if I just cleared space for it but instead I'm this collection of half-deconstructed parts.
As I've rediscovered these parts, I do find myself less willing to reshape myself to make other people feel better. It's probably not doing me any favors at the office, but then neither did my inability to grasp the purpose or technique of networking. Even if I never get that diagnosis I can at least feel a little closer to the things that make me me.
posted by Fish, fish, are you doing your duty? at 12:14 AM on August 30, 2018 [11 favorites]
For me, I've no interest in seeking a diagnosis of whatever it is that I may be labeled as having since, at this point in my life, it not only wouldn't make a difference it would potentially allow my experience of the world and others to be placed into a separate category, not experience of equal meaning to that of others, but one from a place of dysfunction.
While I certainly accept that I'm not "neurotypical", something that has been apparent to me all my life, I deny the associated inference that can come from that, where "typical" defines what is or should be seen as proper or right, rendering any opposition as inherently lesser from coming from someone "flawed". It is unquestionable that I have many flaws and some of those have made my life and the lives of others more difficult, but so too are there many flaws in neurotypical attitudes and behaviors that also make life difficult. My criticism of those values and actions are not coming from flaw but from a place of equal standing and valid difference.
My fundamental experience of the world has been one of unlikeness to others. That's how I saw people and that's how they treated me. It wasn't dislike, I had friends and great parents, but still there was distance and expectations that couldn't be fulfilled. If I had been diagnosed at a young age it may have made my parents life easier, but I'm not sure whether it would have made my life better. It surely would have made some of it more understandable, but where I was seen as normal but different, and often given respect for that difference, having a label attached to my existence makes me feel that would have sharply altered how my perspective was treated. Instead of smart but odd, it would be just the diagnosis "explaining" who I was and where I was coming from. Maybe I'm wrong about that, maybe it would have helped to have some better idea of what my own limitations were instead of continually running into areas where I was challenged by or had to challenge generally held ideas, but I know it would have changed the way I thought about myself making the things I know feel suspect for coming from diagnosed "abnormality" instead of what I held as reasoned response.
Nowadays it doesn't really matter since I've largely removed myself from the kinds of interactions valued by neurotypical society. It took years of struggle in or against what I saw as supposed to be desirable to find what I actually valued and some struggle still remains in keeping financially afloat in the world, but I feel much more at ease with my existence not having to fight the oppressive weight of social demands everyday. There is, however, still a rueful awareness of potential wasted, of some "gift" and expectation unfulfilled, as was so often impressed upon me when I was young, as well as the occasional sense of loss from not being able to experience what I see others experiencing in shared feelings of the moment. I guess I'll never know whether there was a better way, I just have this one and at this point that has to be enough, any diagnosis would only add another layer to "could-have-beens".
posted by gusottertrout at 1:47 AM on August 30, 2018 [5 favorites]
While I certainly accept that I'm not "neurotypical", something that has been apparent to me all my life, I deny the associated inference that can come from that, where "typical" defines what is or should be seen as proper or right, rendering any opposition as inherently lesser from coming from someone "flawed". It is unquestionable that I have many flaws and some of those have made my life and the lives of others more difficult, but so too are there many flaws in neurotypical attitudes and behaviors that also make life difficult. My criticism of those values and actions are not coming from flaw but from a place of equal standing and valid difference.
My fundamental experience of the world has been one of unlikeness to others. That's how I saw people and that's how they treated me. It wasn't dislike, I had friends and great parents, but still there was distance and expectations that couldn't be fulfilled. If I had been diagnosed at a young age it may have made my parents life easier, but I'm not sure whether it would have made my life better. It surely would have made some of it more understandable, but where I was seen as normal but different, and often given respect for that difference, having a label attached to my existence makes me feel that would have sharply altered how my perspective was treated. Instead of smart but odd, it would be just the diagnosis "explaining" who I was and where I was coming from. Maybe I'm wrong about that, maybe it would have helped to have some better idea of what my own limitations were instead of continually running into areas where I was challenged by or had to challenge generally held ideas, but I know it would have changed the way I thought about myself making the things I know feel suspect for coming from diagnosed "abnormality" instead of what I held as reasoned response.
Nowadays it doesn't really matter since I've largely removed myself from the kinds of interactions valued by neurotypical society. It took years of struggle in or against what I saw as supposed to be desirable to find what I actually valued and some struggle still remains in keeping financially afloat in the world, but I feel much more at ease with my existence not having to fight the oppressive weight of social demands everyday. There is, however, still a rueful awareness of potential wasted, of some "gift" and expectation unfulfilled, as was so often impressed upon me when I was young, as well as the occasional sense of loss from not being able to experience what I see others experiencing in shared feelings of the moment. I guess I'll never know whether there was a better way, I just have this one and at this point that has to be enough, any diagnosis would only add another layer to "could-have-beens".
posted by gusottertrout at 1:47 AM on August 30, 2018 [5 favorites]
Mr. Bad Example: " I never would have thought of head circumference as some kind of autism tell.
It's a thing I found out about reading one of Simon Baron-Cohen's books years ago. Apparently a larger head isn't always present or an indicator, but it happens often enough that there have been studies."
Huh. I have a comically enormous head; kids called me "block" in highschool because my head has roughly the dimensions of a concrete block. Never knew that there was a connection.
posted by octothorpe at 4:26 AM on August 30, 2018 [1 favorite]
It's a thing I found out about reading one of Simon Baron-Cohen's books years ago. Apparently a larger head isn't always present or an indicator, but it happens often enough that there have been studies."
Huh. I have a comically enormous head; kids called me "block" in highschool because my head has roughly the dimensions of a concrete block. Never knew that there was a connection.
posted by octothorpe at 4:26 AM on August 30, 2018 [1 favorite]
Oh. Well, the large head size thing is a bit of a comfort then, actually. Women's hats don't come close to fitting me in the largest sizes and the wig I bought for shul with the largest cap size I could find is always in danger of launching vertically off my head. (Also my hair is falling out, so it was a test run for full time use)
190 on the RAADS. But since all I got out of trying to live to other peoples norms was years of unhappiness, a loss of identity, and an alcohol addiction, I've decided this past year not to do that anymore. Oddly enough (just kidding, it's not odd at all) this has been the first year in, um, many that I have not ended up in a partial hospital psychiatric program. And I'm 13 months sober, too.
posted by Ruki at 6:16 AM on August 30, 2018 [13 favorites]
190 on the RAADS. But since all I got out of trying to live to other peoples norms was years of unhappiness, a loss of identity, and an alcohol addiction, I've decided this past year not to do that anymore. Oddly enough (just kidding, it's not odd at all) this has been the first year in, um, many that I have not ended up in a partial hospital psychiatric program. And I'm 13 months sober, too.
posted by Ruki at 6:16 AM on August 30, 2018 [13 favorites]
gus, finding my birth family and learning there is an active heritage of a specific subset of nonneurotypical behaviors and specific educational challenges helped me to understand some things. While my bio-family has an active social tradition that expects, identifies, accommodates, and nurtures members who display these traits from childhood forward, my parents did not know how to spot these traits and were mostly baffled and occasionally punitive in seeking to correct them.
posted by mwhybark at 9:56 AM on August 30, 2018 [5 favorites]
posted by mwhybark at 9:56 AM on August 30, 2018 [5 favorites]
I feel like we are perhaps coming back around the the headline of the post, the "one way" it matters.
It was an extraordinary awakening for me to realize that so many experiences, things I'd always known were a bit odd but just figured were "one of those things" that I just had to deal with somehow, had names and whole bodies of experience and research around them. Prosopagnosia! Alexithymia! So many new words for excruciatingly familiar things!
(Hell, even "anxiety" was a new word for me -- I'd always associated it with "vague nervousness" and it was only when I was researching autism that I realized it was meant to describe the same sensation that I'd always just called "stark staring terror.")
But that's the thing -- I've learned so much from the autistic experiences of others, it makes me realize that this is a conversation that I, too, might be able to contribute to. If I am autistic, my own life experiences that just looked like -- well -- honestly -- broken, pointless junk, a life of miscellaneous dead ends, might actually give someone else useful information. The author, of course, is thinking specifically of her daughter, which is quite proper. But with or without children, we all have a certain obligation to do what we can to help the next generation find its way.
So I guess what I want to say is... for the people who have been prompted to check out the AQ or RAADS-R and found something you didn't expect ... I really hope you'll look into the matter further, and if you find unexpected insights into your life in the autism literature, I hope you'll find some personally-appropriate way to share your own experience, however unremarkable that experience may seem to you.
posted by CauldBlawsTheWind at 4:45 PM on August 30, 2018 [8 favorites]
It was an extraordinary awakening for me to realize that so many experiences, things I'd always known were a bit odd but just figured were "one of those things" that I just had to deal with somehow, had names and whole bodies of experience and research around them. Prosopagnosia! Alexithymia! So many new words for excruciatingly familiar things!
(Hell, even "anxiety" was a new word for me -- I'd always associated it with "vague nervousness" and it was only when I was researching autism that I realized it was meant to describe the same sensation that I'd always just called "stark staring terror.")
But that's the thing -- I've learned so much from the autistic experiences of others, it makes me realize that this is a conversation that I, too, might be able to contribute to. If I am autistic, my own life experiences that just looked like -- well -- honestly -- broken, pointless junk, a life of miscellaneous dead ends, might actually give someone else useful information. The author, of course, is thinking specifically of her daughter, which is quite proper. But with or without children, we all have a certain obligation to do what we can to help the next generation find its way.
So I guess what I want to say is... for the people who have been prompted to check out the AQ or RAADS-R and found something you didn't expect ... I really hope you'll look into the matter further, and if you find unexpected insights into your life in the autism literature, I hope you'll find some personally-appropriate way to share your own experience, however unremarkable that experience may seem to you.
posted by CauldBlawsTheWind at 4:45 PM on August 30, 2018 [8 favorites]
28. And I'm an Autism Specialist.
One source for reading a whole lot about autism specturm disorders in one place:
http://mtautism.opiconnect.org
posted by ITravelMontana at 4:54 PM on August 30, 2018 [2 favorites]
One source for reading a whole lot about autism specturm disorders in one place:
http://mtautism.opiconnect.org
posted by ITravelMontana at 4:54 PM on August 30, 2018 [2 favorites]
Via this comment from shenderson in another thread and a couple of remarks upthread, I want to submit that I shall endeavor to use the term "neurodiverse" in place of "non-neurotypical" in future, and I appreciate being introduced to it.
posted by mwhybark at 5:16 PM on August 30, 2018 [3 favorites]
posted by mwhybark at 5:16 PM on August 30, 2018 [3 favorites]
You're welcome!
At the risk of excessive lexicographic nerdery, I should mention that although conceptually linked and often/easily confused, "neurodiverse" and "neurodivergent" are distinct terms: a "neurodiverse" group might be one that includes both neurotypical and autistic people (among others), while a particular non-neurotypical person in that diverse group would be accurately described as "neurodivergent."
Example: MetaFilter is a neurodiverse community; many neurodivergent users particularly appreciate its stable, low-key "classic" interface.
posted by shenderson at 10:25 PM on August 30, 2018 [6 favorites]
At the risk of excessive lexicographic nerdery, I should mention that although conceptually linked and often/easily confused, "neurodiverse" and "neurodivergent" are distinct terms: a "neurodiverse" group might be one that includes both neurotypical and autistic people (among others), while a particular non-neurotypical person in that diverse group would be accurately described as "neurodivergent."
Example: MetaFilter is a neurodiverse community; many neurodivergent users particularly appreciate its stable, low-key "classic" interface.
posted by shenderson at 10:25 PM on August 30, 2018 [6 favorites]
delightful and appreciated.
posted by mwhybark at 10:53 PM on August 30, 2018 [1 favorite]
posted by mwhybark at 10:53 PM on August 30, 2018 [1 favorite]
I got 42, 42 is the answer! Which is not really news, I just don't know what to do about it.
posted by Coaticass at 12:01 AM on August 31, 2018
posted by Coaticass at 12:01 AM on August 31, 2018
" I lost the regional bee in the first round because I didn’t capitalize the word “Christian”."
I was puzzled by that claim in the article. I have never heard of a spelling bee where you have to capitalize words. In fact, the only case in English where I can think of it making a difference is between "polish" and "Polish." And even that seems a stretch.
I suspect all tests like this are largely useful in getting some percentage of folks to click that "talk to a licensed therapist" link (which I assume leads to $$$), but I guess if it gets people introspecting a bit, it's not worthless.
posted by Gilgamesh's Chauffeur at 6:52 PM on September 7, 2018
I was puzzled by that claim in the article. I have never heard of a spelling bee where you have to capitalize words. In fact, the only case in English where I can think of it making a difference is between "polish" and "Polish." And even that seems a stretch.
I suspect all tests like this are largely useful in getting some percentage of folks to click that "talk to a licensed therapist" link (which I assume leads to $$$), but I guess if it gets people introspecting a bit, it's not worthless.
posted by Gilgamesh's Chauffeur at 6:52 PM on September 7, 2018
Kind of late to the party here, but I'm the author of the linked piece and I appreciate you sharing my work, jpfed. (Forgive my ignorance if I haven't tagged you properly. I'm just getting acclimated to the environment.)
I get the "What's my AQ???" activity. Self-awareness is helpful and I, for one, love data and scales and rankings and comparative analyses. I imagine that a lot of people here are the same way. And as many commentors noted, there are definitely limitations to the AQ inventory. I took it as more of a "Hmmmm....maybe this is a consideration" vs. "I definitely, definitely have autism." More of a keyhole view than opening a window.
I thoroughly enjoyed the discussion here and love the feedback and readinig everyone's contribution of their own stories. There's something about finding a tribe of people you have important things in common with that can help you feel more at home in the world.
Thanks again. Great discussion. Keep it up. :)
posted by ajkay at 7:49 AM on September 12, 2018 [7 favorites]
I get the "What's my AQ???" activity. Self-awareness is helpful and I, for one, love data and scales and rankings and comparative analyses. I imagine that a lot of people here are the same way. And as many commentors noted, there are definitely limitations to the AQ inventory. I took it as more of a "Hmmmm....maybe this is a consideration" vs. "I definitely, definitely have autism." More of a keyhole view than opening a window.
I thoroughly enjoyed the discussion here and love the feedback and readinig everyone's contribution of their own stories. There's something about finding a tribe of people you have important things in common with that can help you feel more at home in the world.
Thanks again. Great discussion. Keep it up. :)
posted by ajkay at 7:49 AM on September 12, 2018 [7 favorites]
Two things which might interest people here:
A recent article: The Educational Tyranny of the Neurotypicals
(Steve Silberman, who is mentioned in the article, is a MeFite, btw.)
And a recent thread: Mindblindness goes both ways.
posted by homunculus at 5:25 PM on September 12, 2018 [1 favorite]
A recent article: The Educational Tyranny of the Neurotypicals
(Steve Silberman, who is mentioned in the article, is a MeFite, btw.)
And a recent thread: Mindblindness goes both ways.
posted by homunculus at 5:25 PM on September 12, 2018 [1 favorite]
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posted by bq at 10:52 AM on August 28, 2018 [15 favorites]