Practical help for woman with Aspergers?
March 29, 2015 11:47 AM Subscribe
What print or online resources would you recommend for a woman who is diagnosed with Aspergers as an adult? Or what advice can you offer?
Google tells me that more and more women are self-diagnosing or being diagnosed with Aspergers in middle age. It turns out that I'm one of them. I'm extremely "high-functioning" (I hate that term because of all it implies about those who don't bear that label) and don't need coaching on eye contact or not taking speech literally or whatever. My main problem is manifested in the trail of broken friendships, abrupt behaviour, storming out of jobs etc which litters my past. I don't know that such a thing exists yet but I'm essentially seeking a handbook on acting normal and not letting the world overwhelm me.
Heh, aren't we all? But your experiences, tools or recommended books/sites are extremely welcome.
Google tells me that more and more women are self-diagnosing or being diagnosed with Aspergers in middle age. It turns out that I'm one of them. I'm extremely "high-functioning" (I hate that term because of all it implies about those who don't bear that label) and don't need coaching on eye contact or not taking speech literally or whatever. My main problem is manifested in the trail of broken friendships, abrupt behaviour, storming out of jobs etc which litters my past. I don't know that such a thing exists yet but I'm essentially seeking a handbook on acting normal and not letting the world overwhelm me.
Heh, aren't we all? But your experiences, tools or recommended books/sites are extremely welcome.
Response by poster: It's funny you should say that. At the risk of derailing my own thread, the doctor (who gave me an unofficial diagnosis; I neither need nor particularly want an official one, as it doesn't help me in practical terms) mentioned to me something along the lines of what I found here:
"Recently there has been some discussion of how Aspergers, a form of autism, is not being picked up and diagnosed in girls and women and how often it can be misdiagnosed frequently as Borderline Personality Disorder (BPD).
The reason women are often not diagnosed is that historically the criteria used is based on how it manifests in boys and men and women will present differently. New research is showing that it is often picked up later in girls who are better at masking it and is not diagnosed until they are teenagers or adults often following a breakdown."
posted by rubbish bin night at 12:09 PM on March 29, 2015 [7 favorites]
"Recently there has been some discussion of how Aspergers, a form of autism, is not being picked up and diagnosed in girls and women and how often it can be misdiagnosed frequently as Borderline Personality Disorder (BPD).
The reason women are often not diagnosed is that historically the criteria used is based on how it manifests in boys and men and women will present differently. New research is showing that it is often picked up later in girls who are better at masking it and is not diagnosed until they are teenagers or adults often following a breakdown."
posted by rubbish bin night at 12:09 PM on March 29, 2015 [7 favorites]
Man, I haven't gone looking for this shit in a long time, but I'm interested to see what people turn up. My experience the last time I was heavily immersed in advice-for-ASD-people was that 80% of it was geared to guys and maybe 90% of it was geared to children. There's WrongPlanet, where I hung out for a few years in high school, but I remember sexism being a definite Thing there--and if I picked up on it at 16 I'm betting it would be way more obvious there. (Well, maybe not--like I said, haven't been around there since 2007.) They have a Women Only forum, though, which you might find helpful.
What kinds of things are you looking for help with, may I ask? Like, with respect to abrupt behavior, etc., what kinds of things are going on building up to those things?
posted by sciatrix at 12:59 PM on March 29, 2015
What kinds of things are you looking for help with, may I ask? Like, with respect to abrupt behavior, etc., what kinds of things are going on building up to those things?
posted by sciatrix at 12:59 PM on March 29, 2015
Response by poster: It's still all a bit vague for me sciatrix (sorry, not very helpful, I know). Part of the problem is that, even though I'm in my 40s, I really don't know what I don't know if you see what I mean. I think that I come across extremely well to most people at first. But at a certain point I'm saying/doing things that put people off and/or make them uncomfortable.
WRT abrupt behaviour or storming out, I occasionally am completely overwhelmed by a situation and will have an emotional outburst. I've done a LOT of work on that side of things and I feel like I've got a handle on it; I know my triggers and am now really good at stopping things before they get to that point. But I am really, really bad at keeping friends. I just don't seem to know the rules of appropriate behaviour. However, because I'm so "high-functioning" (that term again) and present as NT, it's really hard for the doctor to know how to help me. An male acquaintance of mine had coaching for Aspergers and was able to learn to pick up cues like when he was boring someone stupid, and learned to look people in the eye instead of gazing at the light switch (to give a silly and overused example). I could be teaching that stuff myself; probably really well because I now realise I don't do it instinctively.
I suppose what I'm after doesn't really exist (yet). I just wish there was a handbook for knowing things like, for eg, exactly when to stop a conversation so you're not being abrupt but not going on for too long; which topics are appropriate (is it only really light and boring ones?), exactly how much to disclose about yourself and when. At various times I've been accused of being a blabbermouth and of being too closed off (both of these are work, funnily enough) as I try different ways of interacting but never seem to get it right, or not often enough to avoid these constant disasters.
How should one respond when dealing with someone one finds rude and patronising, for example? (NB they are most likely being rude in reaction to my "odd" behaviour. I always seem to end up burning bridges and I just don't know how to pinpoint the cues I'm missing.)
Yes I'm in therapy! I present so well, though, that it's difficult for therapists to know how to help me. The cracks often take a long time to show.
posted by rubbish bin night at 1:32 PM on March 29, 2015 [7 favorites]
WRT abrupt behaviour or storming out, I occasionally am completely overwhelmed by a situation and will have an emotional outburst. I've done a LOT of work on that side of things and I feel like I've got a handle on it; I know my triggers and am now really good at stopping things before they get to that point. But I am really, really bad at keeping friends. I just don't seem to know the rules of appropriate behaviour. However, because I'm so "high-functioning" (that term again) and present as NT, it's really hard for the doctor to know how to help me. An male acquaintance of mine had coaching for Aspergers and was able to learn to pick up cues like when he was boring someone stupid, and learned to look people in the eye instead of gazing at the light switch (to give a silly and overused example). I could be teaching that stuff myself; probably really well because I now realise I don't do it instinctively.
I suppose what I'm after doesn't really exist (yet). I just wish there was a handbook for knowing things like, for eg, exactly when to stop a conversation so you're not being abrupt but not going on for too long; which topics are appropriate (is it only really light and boring ones?), exactly how much to disclose about yourself and when. At various times I've been accused of being a blabbermouth and of being too closed off (both of these are work, funnily enough) as I try different ways of interacting but never seem to get it right, or not often enough to avoid these constant disasters.
How should one respond when dealing with someone one finds rude and patronising, for example? (NB they are most likely being rude in reaction to my "odd" behaviour. I always seem to end up burning bridges and I just don't know how to pinpoint the cues I'm missing.)
Yes I'm in therapy! I present so well, though, that it's difficult for therapists to know how to help me. The cracks often take a long time to show.
posted by rubbish bin night at 1:32 PM on March 29, 2015 [7 favorites]
Have you told your therapist(s) everything in that comment? It seems peculiar that it would be difficult for them to help if you're telling them as much detail as you're telling us.
posted by feckless fecal fear mongering at 2:01 PM on March 29, 2015 [1 favorite]
posted by feckless fecal fear mongering at 2:01 PM on March 29, 2015 [1 favorite]
I've never been diagnosed with Aspergers, although I think I am somewhere "on the spectrum" as they say. I'm a little older than you -- in my 50's, also female, and in high tech. I had a very hard time making friends in grade/high school and felt very socially awkward. I got a lot of training professionally on communication skills which helped me a great deal. I wish I'd had access to that kind of training as a child.
I picked up The Charisma Myth about a year ago -- it encapsulated much of what I'd learned through all those classes and has some practical exercises to help you apply what is in there. Perhaps it would be useful to take a look at it and see if there is anything there that seems like it would help.
posted by elmay at 2:20 PM on March 29, 2015 [3 favorites]
I picked up The Charisma Myth about a year ago -- it encapsulated much of what I'd learned through all those classes and has some practical exercises to help you apply what is in there. Perhaps it would be useful to take a look at it and see if there is anything there that seems like it would help.
posted by elmay at 2:20 PM on March 29, 2015 [3 favorites]
Aspergirls by Rudy Simone rang very true for me. Cynthia Kim has a great blog about being a woman diagnosed in adulthood. Also, try the Autism Women's Network. I participate in WrongPlanet.net and I haven't noticed too much sexism. Reddit has an r/aspergirls subreddit. I have found that I have quite a bit of common ground with Aspie men as well as women, though. I don't think the Aspie female brain is all that different from the Aspie male brain. Rudy Simone covers some of those slight differences in her book.
posted by Beethoven's Sith at 3:30 PM on March 29, 2015 [6 favorites]
posted by Beethoven's Sith at 3:30 PM on March 29, 2015 [6 favorites]
For some reason I feel like I only want to talk to women about this so I was so glad to see the Autistic Women's Collective form. Oddly, I have not had much time to spend there, too busy with work. But, wow, tons of women just like me there.
posted by cda at 5:47 PM on March 29, 2015 [4 favorites]
posted by cda at 5:47 PM on March 29, 2015 [4 favorites]
Everything Beethoven's Sith linked is a good resource--I'd seen the Autism Women's Network but it had seemed sort of dead when I checked it out... goodness, would that have been in 2011? So yeah, I am totally out of step. :) Aspergirls, also pretty good but I found it a little annoyingly heteronormative, which is probably my cross to bear when looking for stuff.
My experience has been that, mm, the thought process of autistic women is not always that different from the thought processes of autistic men, but the socialization you get is way different. So, for example, since women are expected to be good at social processing, you kind of get those things thrown at you until someone either gives you a hand helping you figure stuff out (anecdotally, autistic women are more likely to have friends take them on and give them SOME social teaching than men) or you panic, flail around, and develop coping mechanisms for social stuff which may or may not be all that adaptive for the situation. Women have harsher consequences for social missteps than men do--think about all the concern trolling about autism-spectrum men when people talk about men approaching women in public, but the assumption there is that the women men are approaching are totally good at social stuff and neurotypical. No one even thinks women can have this kind of learning issue. So my experience is that women wind up adapting a little differently than men do because the social environment and expectations on women are really different.
I feel you on passing well enough that therapists aren't sure where to give advice. A lot of the stuff aimed at therapy for people on the autism spectrum is, as I mentioned, aimed for children who haven't quite figured out basic social stuff. When you've been coping for twenty years and coming up with workarounds to get yourself through life, you've often picked up a lot of that in the same way that someone who accidentally got stuck in a foreign country for a few years will have picked up language and customs--pretty good at getting around, but with some big unexpected holes. It's difficult to negotiate that and figure out both what you're missing and how to give yourself some better groundwork to fill it in. And it's especially hard when you do very well on more surface-level interactions and you mostly mess up when you're tired or overwhelmed or distracted or otherwise running at less than peak capacity, which is very much an issue for me. I'm thinking through most social stuff consciously or semi-consciously, so when I have other stuff using up that brainspace my ability to read people and accurately respond to emotions goes all to hell.
And I feel you on not really quite knowing what you don't know, which can be really hard to articulate! Sometimes it's easier for someone who knows you and likes you to watch you interact and say "Okay, I've noticed that you missed X as an overture to open up a little more. Maybe try that next time?" It's also really easy to make yourself anxious if that person doesn't really have your back, though, which makes things difficult--you'd need to have a friend or family member whose judgement and affection for you you trust to pull that off. Good job, by the way, on articulating your triggers for being overwhelmed! That's one of my big issues, and knowing when to politely extricate yourself is super important. I have found it helpful to specifically seek out people who have mental stuff of their own going on but who have a good handle on it to befriend--usually, if I say "I'm overwhelmed by this crowd and I need to go sit down and not be touched for a while," they're the ones who go "Gotcha. Do you need me to talk to you so you can focus on that or be quiet?" And hey, focusing on irritating brain shit can be something to bond over then. :)
That aside, a little bit of direct advice on some of that seems like it might be useful. It's worth noting that everyone makes social missteps sometimes of the "talking someone's ear off" variety or picking inappropriate topics. I say that because my experience is that AS people can be really hard on themselves about social missteps and get very anxious about doing it "right" next time, and that can be very counterproductive if you're making yourself anxious and distracting yourself from the interaction with your anxiety to "get it right." And well, sometimes there is no "right" because a lot of these things depend on the specific person and the mood they're in! Sometimes you're just not going to read things right, and that's not always on you--sometimes the other person isn't even sending the right signals or socialing clearly.
Okay. Regarding figuring out how to bond with a person and make better friends: I have found that I have a hard time asking people to interact with me in a new environment from the one I first met them in. For example, I have a bunch of friends I met at an ace meetup I organized. I think it took me something like nine months for ask one of them to do something social with me outside the context of that meetup. This is pretty bad for friends-making because a lot of the time people will assume that if you don't ask them to do something with you outside of that context that you're not really interested in being closer friends, and then when the occasion when you see them gets dropped from one of your lives, they're gone forever. Compounding this for me is the fact that people I get on with also tend to be awful about this...
Also, any way you can put yourself in a community that lets you interact with a lot of other possibly-autistic or autistic-compatible women? I have found this in my local ace community, but also in communities skewed towards nerdy women or female engineers or people From the Internet or sometimes stuff like dog training and horseback riding activities. (Dog training: a surprisingly useful "special interest" for an autistic person to pick up, and actually fairly common for AS women. I have learned a hell of a lot about how to interact socially from dogs.) It's quite possible that you just haven't found your "people" yet, or that if you have they're not good at reaching out and forming close relationships. Some of these sound to me like they might be compatibility issues not just on your part, and maybe seeking out friends who intuitively get you as a person a little better would be good for you. People who are really really verbal about things which bug them or which they like are good if you can find them; you want people who function in terms of Ask Culture, not Guess.
Regarding figuring out the "right" amount of information to disclose: I've gotten the blabbermouth comment and the "wow I cannot read you" stuff, too, probably because I am very open about some stuff that people think should be relatively private, but also very, very quiet about other things that people think of as "public." (My relationships, for example--I went a year after getting married before my coworker even knew I had a partner, and that was a very calculated decision on my part to be more open.) I also have a tendency to go straight from 0 to 60 re being "closed-off" to "open," which I think surprises people. One thing that you might try in this vein is to try to slowly ramp up the level of intimacy you share with a friend--personal details, stories from your past, that sort of thing. It might help to list a bunch of stories or details about yourself, and then rank them on a scale from most impersonal to most intimate. Run that by your therapist and see what they have to say, and then maybe think about what level of closeness you are at with potential friends as you talk more with them.
Regarding people who are rude and patronising, I generally try to handle that by being assertive but by couching my response in such a way that I leave room for there to be a good-faith mistake or miscommunication. I try to operate on the principle of "reflecting aggression"; if someone approaches me and is aggressive to me, I respond assertively but no more aggressively than they do. (For example, someone who explodes at me with no warning because he doesn't like that I'm eating near him gets an explosive, pissed off response. Someone who merely says something snide to me might get a slightly sharp response in a level tone back.) And I always take any signal from the other person that they're willing to de-escalate and drop things as much as I can. If there's a clear misunderstanding, I try to resolve it quickly and make it clear that I am willing to be friends if the other person is willing to be polite to me. And I try to let aggression blow by me where I can, although I admit that shit is really hard sometimes.
I always think of a situation where I was working in a field situation with a new and very extroverted female colleague who had just joined my lab, and the field station manager and his wife were also pretty new to interacting with my work group. The field manager was very friendly and sought out contact with both of us, but his wife was pretty reserved--she smiled and was friendly when we were around, but she was pretty quiet and didn't seek out people's company too much. My colleague was a bit hurt by this and felt that the field manager's wife didn't like us and was snubbing us with her behavior; I, on the other hand, read it as classic introvert and had felt that the field manager's wife might be someone I could really get on with if I was interested in building a real relationship with her.
Stuff like this is classic miscommunication, easily resolved by people talking through where their worldviews are coming from but which many people, especially neurotypical people, do not think to do. (And here I'm thinking explicitly of neurotypical people rather than just non-autistic people.) So when someone blows up at me over a miscommunication like that, I try to ignore the crankiness and address the miscommunication if I can see it. (In this case, I explained to my colleague privately that I thought the manager's wife was just a bit introverted and shy and that it probably wasn't personal, which worked out well. But it's interesting imagining what might have happened had my colleague confronted the manager's wife or something, which would have itself been impolite, or had my colleague let her hurt feelings bleed into our relationship with the field management team.)
Anyway, I've written a book here! Feel free to MeMail me if you want to hash out some more detailed stuff in private.
posted by sciatrix at 7:08 PM on March 29, 2015 [17 favorites]
My experience has been that, mm, the thought process of autistic women is not always that different from the thought processes of autistic men, but the socialization you get is way different. So, for example, since women are expected to be good at social processing, you kind of get those things thrown at you until someone either gives you a hand helping you figure stuff out (anecdotally, autistic women are more likely to have friends take them on and give them SOME social teaching than men) or you panic, flail around, and develop coping mechanisms for social stuff which may or may not be all that adaptive for the situation. Women have harsher consequences for social missteps than men do--think about all the concern trolling about autism-spectrum men when people talk about men approaching women in public, but the assumption there is that the women men are approaching are totally good at social stuff and neurotypical. No one even thinks women can have this kind of learning issue. So my experience is that women wind up adapting a little differently than men do because the social environment and expectations on women are really different.
I feel you on passing well enough that therapists aren't sure where to give advice. A lot of the stuff aimed at therapy for people on the autism spectrum is, as I mentioned, aimed for children who haven't quite figured out basic social stuff. When you've been coping for twenty years and coming up with workarounds to get yourself through life, you've often picked up a lot of that in the same way that someone who accidentally got stuck in a foreign country for a few years will have picked up language and customs--pretty good at getting around, but with some big unexpected holes. It's difficult to negotiate that and figure out both what you're missing and how to give yourself some better groundwork to fill it in. And it's especially hard when you do very well on more surface-level interactions and you mostly mess up when you're tired or overwhelmed or distracted or otherwise running at less than peak capacity, which is very much an issue for me. I'm thinking through most social stuff consciously or semi-consciously, so when I have other stuff using up that brainspace my ability to read people and accurately respond to emotions goes all to hell.
And I feel you on not really quite knowing what you don't know, which can be really hard to articulate! Sometimes it's easier for someone who knows you and likes you to watch you interact and say "Okay, I've noticed that you missed X as an overture to open up a little more. Maybe try that next time?" It's also really easy to make yourself anxious if that person doesn't really have your back, though, which makes things difficult--you'd need to have a friend or family member whose judgement and affection for you you trust to pull that off. Good job, by the way, on articulating your triggers for being overwhelmed! That's one of my big issues, and knowing when to politely extricate yourself is super important. I have found it helpful to specifically seek out people who have mental stuff of their own going on but who have a good handle on it to befriend--usually, if I say "I'm overwhelmed by this crowd and I need to go sit down and not be touched for a while," they're the ones who go "Gotcha. Do you need me to talk to you so you can focus on that or be quiet?" And hey, focusing on irritating brain shit can be something to bond over then. :)
That aside, a little bit of direct advice on some of that seems like it might be useful. It's worth noting that everyone makes social missteps sometimes of the "talking someone's ear off" variety or picking inappropriate topics. I say that because my experience is that AS people can be really hard on themselves about social missteps and get very anxious about doing it "right" next time, and that can be very counterproductive if you're making yourself anxious and distracting yourself from the interaction with your anxiety to "get it right." And well, sometimes there is no "right" because a lot of these things depend on the specific person and the mood they're in! Sometimes you're just not going to read things right, and that's not always on you--sometimes the other person isn't even sending the right signals or socialing clearly.
Okay. Regarding figuring out how to bond with a person and make better friends: I have found that I have a hard time asking people to interact with me in a new environment from the one I first met them in. For example, I have a bunch of friends I met at an ace meetup I organized. I think it took me something like nine months for ask one of them to do something social with me outside the context of that meetup. This is pretty bad for friends-making because a lot of the time people will assume that if you don't ask them to do something with you outside of that context that you're not really interested in being closer friends, and then when the occasion when you see them gets dropped from one of your lives, they're gone forever. Compounding this for me is the fact that people I get on with also tend to be awful about this...
Also, any way you can put yourself in a community that lets you interact with a lot of other possibly-autistic or autistic-compatible women? I have found this in my local ace community, but also in communities skewed towards nerdy women or female engineers or people From the Internet or sometimes stuff like dog training and horseback riding activities. (Dog training: a surprisingly useful "special interest" for an autistic person to pick up, and actually fairly common for AS women. I have learned a hell of a lot about how to interact socially from dogs.) It's quite possible that you just haven't found your "people" yet, or that if you have they're not good at reaching out and forming close relationships. Some of these sound to me like they might be compatibility issues not just on your part, and maybe seeking out friends who intuitively get you as a person a little better would be good for you. People who are really really verbal about things which bug them or which they like are good if you can find them; you want people who function in terms of Ask Culture, not Guess.
Regarding figuring out the "right" amount of information to disclose: I've gotten the blabbermouth comment and the "wow I cannot read you" stuff, too, probably because I am very open about some stuff that people think should be relatively private, but also very, very quiet about other things that people think of as "public." (My relationships, for example--I went a year after getting married before my coworker even knew I had a partner, and that was a very calculated decision on my part to be more open.) I also have a tendency to go straight from 0 to 60 re being "closed-off" to "open," which I think surprises people. One thing that you might try in this vein is to try to slowly ramp up the level of intimacy you share with a friend--personal details, stories from your past, that sort of thing. It might help to list a bunch of stories or details about yourself, and then rank them on a scale from most impersonal to most intimate. Run that by your therapist and see what they have to say, and then maybe think about what level of closeness you are at with potential friends as you talk more with them.
Regarding people who are rude and patronising, I generally try to handle that by being assertive but by couching my response in such a way that I leave room for there to be a good-faith mistake or miscommunication. I try to operate on the principle of "reflecting aggression"; if someone approaches me and is aggressive to me, I respond assertively but no more aggressively than they do. (For example, someone who explodes at me with no warning because he doesn't like that I'm eating near him gets an explosive, pissed off response. Someone who merely says something snide to me might get a slightly sharp response in a level tone back.) And I always take any signal from the other person that they're willing to de-escalate and drop things as much as I can. If there's a clear misunderstanding, I try to resolve it quickly and make it clear that I am willing to be friends if the other person is willing to be polite to me. And I try to let aggression blow by me where I can, although I admit that shit is really hard sometimes.
I always think of a situation where I was working in a field situation with a new and very extroverted female colleague who had just joined my lab, and the field station manager and his wife were also pretty new to interacting with my work group. The field manager was very friendly and sought out contact with both of us, but his wife was pretty reserved--she smiled and was friendly when we were around, but she was pretty quiet and didn't seek out people's company too much. My colleague was a bit hurt by this and felt that the field manager's wife didn't like us and was snubbing us with her behavior; I, on the other hand, read it as classic introvert and had felt that the field manager's wife might be someone I could really get on with if I was interested in building a real relationship with her.
Stuff like this is classic miscommunication, easily resolved by people talking through where their worldviews are coming from but which many people, especially neurotypical people, do not think to do. (And here I'm thinking explicitly of neurotypical people rather than just non-autistic people.) So when someone blows up at me over a miscommunication like that, I try to ignore the crankiness and address the miscommunication if I can see it. (In this case, I explained to my colleague privately that I thought the manager's wife was just a bit introverted and shy and that it probably wasn't personal, which worked out well. But it's interesting imagining what might have happened had my colleague confronted the manager's wife or something, which would have itself been impolite, or had my colleague let her hurt feelings bleed into our relationship with the field management team.)
Anyway, I've written a book here! Feel free to MeMail me if you want to hash out some more detailed stuff in private.
posted by sciatrix at 7:08 PM on March 29, 2015 [17 favorites]
This thread is closed to new comments.
Either way, something that may help is DBT. It's the therapy used for BPD, which is characterized by emotional dysregulation, often leading to a "trail of broken friendships, abrupt behaviour, storming out of jobs etc." This site offers the DBT methodology for free.
posted by feckless fecal fear mongering at 11:57 AM on March 29, 2015