What do you do when your loved one's personality alters following a diagnosis?
December 9, 2008 7:57 AM Subscribe
Have you ever had a long term partner who received a diagnosis and then completely changed? Have they become so obsessed with their condition that they seem to forget you exist at all? Is there light at the end of the tunnel? - (This is pretty long, thanks very much to anybody who takes the time to read this.)
My partner and I have been together five years. This year he was diagnosed with Adult Aspergers, almost by accident. What happened was, he said something one day about the way he experiences life and I said, "Haha, that sounds like you've got Aspergers!"
He said, "No I don't", but something twigged in my brain. I realised I'd never read the symptoms in the DSM IV. So I did, and suddenly several of my partner's quirks and habits became clear.
Sure enough, he got diagnosed. I was happy for him. It must be awesome to go 30-odd years feeling different to other people and then finally realise there's a reason for it.
Before the diagnosis, everything was fine. SINCE the diagnosis, everything has changed. He has become obsessed. All he does is read books about Aspergers or log on to his Aspie web community. He only wants to talk to me about Aspergers.
And now, everything in his life is about Aspergers. Every action, every thought, everything in his life, is now new--because it is seen through an Aspergers filter now.
The way we relate to each other has changed so much that I am in shock. I honestly don't know what to think.
The reason I became best friends with him and eventually fell in love with him is because he was such a caring person. I've had mental health problems in the past too, primarily before I knew him, but my partner has always been a shoulder to cry on; he would never turn me away if I was sad.
But since being diagnosed, if I get sad, he says, "I don't understand this."
He says he's got Aspergers and people with Aspergers don't feel empathy like normal people.
But then why did I feel like he was the most empathic person in the world before... for five whole years? Was it a lie?
It honestly seems like he is reading all this material on his condition and "programming" himself like a robot. As though he has some subconscious need to be the most extreme Aspie. It is very disturbing behaviour and most unlike him.
Examples of the way he treated me before:
--Committed to our relationship and our future, and working hard so we could start a family.
--If I needed to talk, he would listen. Even though sometimes he would vague out, he would at least attempt to pretend he was listening :)
--If I cried, he would hug me.
--Talked a lot, and very openly.
Background: for the past 3 years at least, I have been his pillar of strength. I have been a practical, responsible person, studying hard and working to make a future for us. He has been working hard too, but I have at times felt as though I am carrying the "mental" burden of being positive and having a good attitude all the time. (Whereas he tends to get a bit sooky and pessimistic, at which point he comes to me for comfort.)
That was okay by me though. I felt like being the "strong one" earned me a shoulder to cry on, on the rare occasions I did feel sad.
It worked that way for years. I knew I could rely on him, which made it much easier to never get sad in the first place.
But now, he:
--Literally ignores me when I try to talk to him about something. It's almost painted across his face: "I don't have to even bother responding or making a facial expression. I have Aspergers."
--Goes to sleep if I cry.
--Refuses to acknowledge he used to be any different to the way he is now.
I feel like I'm going crazy .. how could I have imagined 5 years of caring behaviour?
Now, no matter what I say to him, he has an excuse (Aspergers-related) for why he can't understand / take the time to listen / care. He likes to list symptoms. It is as though my feelings no longer count, because if it's not Aspergers, it's not real pain.
He seems confused about why I am upset. I asked him directly, tonight: "Do you realise you are acting like you have always been this way? It's like you forget what you were like before the diagnosis." His response: "I don't remember."
There are only two explanations I can think of for all this.
(1.) He could be just going through this overwhelming reflective stage, which, coupled with his inbuilt Aspergers obsessive nature has made him completely self absorbed and utterly convinced that he is more severely autistic than he actually is.
(2.) He is experiencing some subtle personality changes following the diagnosis, but they seem more extreme because he has just happened to also suddenly lose feelings for me at the same time.
For the past few months, we've only managed to get along for short periods of time, a few days in a row maximum. During those more lighthearted times, he will tell me he does love me and everything seems like it might get better.
But then it gets destroyed suddenly, when he decides to start acting socially retarded towards me, for no reason. He gets this blank expression on his face and can't extend the simple courtesy of a response or a smile. (Yet the cat will come in and he will manage a smile.)
In essence, he doesn't seem to acknowledge there is a problem with the relationship. He seems to have a major lack in insight which stuns me because he has always been pretty analytical and self aware.
It's like I can't get through to him anymore. We always communicated so freely. He would never ignore me! Now it happens almost every day. He claims he loves me, but that I just don't understand what it's like to have Aspergers.
But how can somebody get so good at coping with it over 30 years and then suddenly decide "well that was too much work, may as well give up now that I have an excuse!"?
Sometimes I can't help but feel like he's faking it somehow... or milking it. As a teenager, I was diagnosed with depression and an eating disorder and I did get more symptomatic and more self absorbed, almost on purpose. So I understand becoming a bit obsessed with a diagnosis, but I thought that was sort of an normal adolescent self-discovery thing that you get over. My partner is in his thirties.
Extra, perhaps relevant piece of info: Over the years I have teased him about being mildly hypochondriac-- since being diagnosed, he's been way worse. He is convinced he has allergies and has gone on an extreme diet because "it's worth a try to see if he can improve the Aspergers." First he cut out dairy, then he cut out gluten. Tonight he mentioned eating less meat but I told him that was going way overboard and he agreed! Could lack of nutrition be causing/adding to this personality change?
We are going to therapy next week, but I don't know how useful it will be because he is only doing it for me -- he doesn't actually seem to want to actively work on our relationship, he seems too consumed with his own health problems.
Sorry sorry sorry for the length; I know it's probably confused you all - I could go on, but the main question is: Is this type of reaction to a diagnosis common? Does anyone have any experience at all? What's the prognosis? Am I doomed?
Stories about any crazy behaviour following the diagnosis of any condition or illness are be very welcome!
I hope I have accurately conveyed how surprising this is for me. Yes, before the diagnosis he was a bit socially retarded at times, but in a mostly endearing way. You would never have thought there was anything wrong with him beyond a slight tendency towards depression that most introverts or nerds have to some degree. He is/was funny and loyal and caring and nice.
Email me on postdiagnosisshock@gmail.com if you need to.
My partner and I have been together five years. This year he was diagnosed with Adult Aspergers, almost by accident. What happened was, he said something one day about the way he experiences life and I said, "Haha, that sounds like you've got Aspergers!"
He said, "No I don't", but something twigged in my brain. I realised I'd never read the symptoms in the DSM IV. So I did, and suddenly several of my partner's quirks and habits became clear.
Sure enough, he got diagnosed. I was happy for him. It must be awesome to go 30-odd years feeling different to other people and then finally realise there's a reason for it.
Before the diagnosis, everything was fine. SINCE the diagnosis, everything has changed. He has become obsessed. All he does is read books about Aspergers or log on to his Aspie web community. He only wants to talk to me about Aspergers.
And now, everything in his life is about Aspergers. Every action, every thought, everything in his life, is now new--because it is seen through an Aspergers filter now.
The way we relate to each other has changed so much that I am in shock. I honestly don't know what to think.
The reason I became best friends with him and eventually fell in love with him is because he was such a caring person. I've had mental health problems in the past too, primarily before I knew him, but my partner has always been a shoulder to cry on; he would never turn me away if I was sad.
But since being diagnosed, if I get sad, he says, "I don't understand this."
He says he's got Aspergers and people with Aspergers don't feel empathy like normal people.
But then why did I feel like he was the most empathic person in the world before... for five whole years? Was it a lie?
It honestly seems like he is reading all this material on his condition and "programming" himself like a robot. As though he has some subconscious need to be the most extreme Aspie. It is very disturbing behaviour and most unlike him.
Examples of the way he treated me before:
--Committed to our relationship and our future, and working hard so we could start a family.
--If I needed to talk, he would listen. Even though sometimes he would vague out, he would at least attempt to pretend he was listening :)
--If I cried, he would hug me.
--Talked a lot, and very openly.
Background: for the past 3 years at least, I have been his pillar of strength. I have been a practical, responsible person, studying hard and working to make a future for us. He has been working hard too, but I have at times felt as though I am carrying the "mental" burden of being positive and having a good attitude all the time. (Whereas he tends to get a bit sooky and pessimistic, at which point he comes to me for comfort.)
That was okay by me though. I felt like being the "strong one" earned me a shoulder to cry on, on the rare occasions I did feel sad.
It worked that way for years. I knew I could rely on him, which made it much easier to never get sad in the first place.
But now, he:
--Literally ignores me when I try to talk to him about something. It's almost painted across his face: "I don't have to even bother responding or making a facial expression. I have Aspergers."
--Goes to sleep if I cry.
--Refuses to acknowledge he used to be any different to the way he is now.
I feel like I'm going crazy .. how could I have imagined 5 years of caring behaviour?
Now, no matter what I say to him, he has an excuse (Aspergers-related) for why he can't understand / take the time to listen / care. He likes to list symptoms. It is as though my feelings no longer count, because if it's not Aspergers, it's not real pain.
He seems confused about why I am upset. I asked him directly, tonight: "Do you realise you are acting like you have always been this way? It's like you forget what you were like before the diagnosis." His response: "I don't remember."
There are only two explanations I can think of for all this.
(1.) He could be just going through this overwhelming reflective stage, which, coupled with his inbuilt Aspergers obsessive nature has made him completely self absorbed and utterly convinced that he is more severely autistic than he actually is.
(2.) He is experiencing some subtle personality changes following the diagnosis, but they seem more extreme because he has just happened to also suddenly lose feelings for me at the same time.
For the past few months, we've only managed to get along for short periods of time, a few days in a row maximum. During those more lighthearted times, he will tell me he does love me and everything seems like it might get better.
But then it gets destroyed suddenly, when he decides to start acting socially retarded towards me, for no reason. He gets this blank expression on his face and can't extend the simple courtesy of a response or a smile. (Yet the cat will come in and he will manage a smile.)
In essence, he doesn't seem to acknowledge there is a problem with the relationship. He seems to have a major lack in insight which stuns me because he has always been pretty analytical and self aware.
It's like I can't get through to him anymore. We always communicated so freely. He would never ignore me! Now it happens almost every day. He claims he loves me, but that I just don't understand what it's like to have Aspergers.
But how can somebody get so good at coping with it over 30 years and then suddenly decide "well that was too much work, may as well give up now that I have an excuse!"?
Sometimes I can't help but feel like he's faking it somehow... or milking it. As a teenager, I was diagnosed with depression and an eating disorder and I did get more symptomatic and more self absorbed, almost on purpose. So I understand becoming a bit obsessed with a diagnosis, but I thought that was sort of an normal adolescent self-discovery thing that you get over. My partner is in his thirties.
Extra, perhaps relevant piece of info: Over the years I have teased him about being mildly hypochondriac-- since being diagnosed, he's been way worse. He is convinced he has allergies and has gone on an extreme diet because "it's worth a try to see if he can improve the Aspergers." First he cut out dairy, then he cut out gluten. Tonight he mentioned eating less meat but I told him that was going way overboard and he agreed! Could lack of nutrition be causing/adding to this personality change?
We are going to therapy next week, but I don't know how useful it will be because he is only doing it for me -- he doesn't actually seem to want to actively work on our relationship, he seems too consumed with his own health problems.
Sorry sorry sorry for the length; I know it's probably confused you all - I could go on, but the main question is: Is this type of reaction to a diagnosis common? Does anyone have any experience at all? What's the prognosis? Am I doomed?
Stories about any crazy behaviour following the diagnosis of any condition or illness are be very welcome!
I hope I have accurately conveyed how surprising this is for me. Yes, before the diagnosis he was a bit socially retarded at times, but in a mostly endearing way. You would never have thought there was anything wrong with him beyond a slight tendency towards depression that most introverts or nerds have to some degree. He is/was funny and loyal and caring and nice.
Email me on postdiagnosisshock@gmail.com if you need to.
But since being diagnosed, if I get sad, he says, "I don't understand this."
Goes to sleep if I cry.
I don't have diabetes but I still understand that diabetics need insulin. I'm not sure I've ever really experienced low blood sugar but I don't roll my eyes when someone gets out their needle.
(Yet the cat will come in and he will manage a smile.)
I suggest you calmly explain to him that he hasn't found an excuse to become unfeeling.
posted by jon_kill at 8:23 AM on December 9, 2008 [3 favorites]
Goes to sleep if I cry.
I don't have diabetes but I still understand that diabetics need insulin. I'm not sure I've ever really experienced low blood sugar but I don't roll my eyes when someone gets out their needle.
(Yet the cat will come in and he will manage a smile.)
I suggest you calmly explain to him that he hasn't found an excuse to become unfeeling.
posted by jon_kill at 8:23 AM on December 9, 2008 [3 favorites]
I would be wondering if he had been looking for an excuse to disengage from the relationship and had found it. For someone in their thirties, this is pretty weird. I'd expect more of this kind of self-involved flightiness from someone in their teens, someone who had more reason to be searching clinging to an identity, and it sounds like you had previously been doing a disproportionate share of the emotional work.
On the other hand, maybe up to now he's been desperately sad and isolated and lonely and is just elated to find that he's not some kind of freakshow, but still, it seems like he's not letting you in with him.
You can't know unless he tells you. It sounds like you've worked hard to communicate with him and let him know that he's changed and this is hurting you. Maybe the therapist will be able to help -- it might be helpful to see a therapist with some experience w/Asperger's, so your partner doesn't have the excuse that the therapist isn't knowledgeable enough about his particular challenges and concerns.
This sounds hard. I'm sorry. (Also, you don't sound crazy at all. You sound like you're at your wit's end.)
posted by A Terrible Llama at 8:26 AM on December 9, 2008 [3 favorites]
On the other hand, maybe up to now he's been desperately sad and isolated and lonely and is just elated to find that he's not some kind of freakshow, but still, it seems like he's not letting you in with him.
You can't know unless he tells you. It sounds like you've worked hard to communicate with him and let him know that he's changed and this is hurting you. Maybe the therapist will be able to help -- it might be helpful to see a therapist with some experience w/Asperger's, so your partner doesn't have the excuse that the therapist isn't knowledgeable enough about his particular challenges and concerns.
This sounds hard. I'm sorry. (Also, you don't sound crazy at all. You sound like you're at your wit's end.)
posted by A Terrible Llama at 8:26 AM on December 9, 2008 [3 favorites]
Is this type of reaction to a diagnosis common?
I don't know about common, but during a past 2-year relationship the woman I was dating received a diagnosis of some sort of indeterminate anxiety disorder (from a person who wasn't even a psychologist/psychiatrist) and suddenly that became her outlook on the world and the way she managed people. Pissed me off to no end, and having seen her a few times more recently she's sort of given it up and admitted that believing that she was especially prone to anxiety made it an easy excuse. FWIW, these days when I see seems more emotionally grounded and doesn't do the whole excuse thing to anyone. So if he seems to have undergone a drastic personality change, it may just be a sort of emotional laziness where he feels he doesn't have to give a crap and can let everyone else pull his weight. I would hate to have you go off thinking this is the case when he actually can't use his prevously developed coping strategies for whatever reason, but it isn't outside the realm of possibility.
posted by Inspector.Gadget at 8:36 AM on December 9, 2008
I don't know about common, but during a past 2-year relationship the woman I was dating received a diagnosis of some sort of indeterminate anxiety disorder (from a person who wasn't even a psychologist/psychiatrist) and suddenly that became her outlook on the world and the way she managed people. Pissed me off to no end, and having seen her a few times more recently she's sort of given it up and admitted that believing that she was especially prone to anxiety made it an easy excuse. FWIW, these days when I see seems more emotionally grounded and doesn't do the whole excuse thing to anyone. So if he seems to have undergone a drastic personality change, it may just be a sort of emotional laziness where he feels he doesn't have to give a crap and can let everyone else pull his weight. I would hate to have you go off thinking this is the case when he actually can't use his prevously developed coping strategies for whatever reason, but it isn't outside the realm of possibility.
posted by Inspector.Gadget at 8:36 AM on December 9, 2008
Maybe engage him from the perspective of whether those emotional attachment things were really hard for him before, whether he really struggled to think, feel and act in the ways he felt were appropriate? If you can give him a safe way to say that yes, it was a real struggle to do all those things you valued, it might bring him around to admitting that perhaps he's not quite doing them the say way now.
posted by jacquilynne at 8:39 AM on December 9, 2008 [2 favorites]
posted by jacquilynne at 8:39 AM on December 9, 2008 [2 favorites]
It's really hard when a loved one's behavior to you changes dramatically. Have you told him you have noticed a dramatic shift? Have you told him about the dynamic shift you have felt?
From what you've presented, it really does sound like he's taken this as a crutch. Whether this is because he has some desire to end the relationship, or he's just taken it as an excuse to become very introspective on the verge of being self absorbed is yet to be seen.
posted by piratebowling at 8:44 AM on December 9, 2008
From what you've presented, it really does sound like he's taken this as a crutch. Whether this is because he has some desire to end the relationship, or he's just taken it as an excuse to become very introspective on the verge of being self absorbed is yet to be seen.
posted by piratebowling at 8:44 AM on December 9, 2008
Call him on his bullshit. His behavior is indeed mildly autistic - but he's using it as a get-out-of-jail-free card, which is patently unfair. What's worse, is that he's turned it into a geek obsession (very typical of Aspergers).
He's got a codified system he found on the internet where he thinks he doesn't have to bother with other people's negative emotions. Sorry, but he does. And he's going to have to deal with a whole hell of a lot of it in a hurry if he wants to keep the relationship.
If you're crying, and he asks frankly, "Why are you sad?" - He's got Aspergers. He's confused, but he cares.
If you're crying, and he shrugs and says, "I don't understand this." - He's being a dick. He is showing off his get-out-of-jail-free card.
To be fair to him, his diet and his post-diagnosis behavior are both examples of geek-going-overboard that's one of the hallmarks of Aspergers - but he needs to recognize that, and put in the effort to keep it in check.
If he has the condition, he needs therapy to keep it under control, and maybe medicine to handle depression. He needs a counselor or psychologist to put a boot up his rear, and to help him differentiate "being a dick" from "autistic." If he's already seeing one, then have your beau schedule a few joint-sessions with you involved.
posted by Slap*Happy at 8:45 AM on December 9, 2008 [13 favorites]
He's got a codified system he found on the internet where he thinks he doesn't have to bother with other people's negative emotions. Sorry, but he does. And he's going to have to deal with a whole hell of a lot of it in a hurry if he wants to keep the relationship.
If you're crying, and he asks frankly, "Why are you sad?" - He's got Aspergers. He's confused, but he cares.
If you're crying, and he shrugs and says, "I don't understand this." - He's being a dick. He is showing off his get-out-of-jail-free card.
To be fair to him, his diet and his post-diagnosis behavior are both examples of geek-going-overboard that's one of the hallmarks of Aspergers - but he needs to recognize that, and put in the effort to keep it in check.
If he has the condition, he needs therapy to keep it under control, and maybe medicine to handle depression. He needs a counselor or psychologist to put a boot up his rear, and to help him differentiate "being a dick" from "autistic." If he's already seeing one, then have your beau schedule a few joint-sessions with you involved.
posted by Slap*Happy at 8:45 AM on December 9, 2008 [13 favorites]
Go to couples therapy. You need a professional who understands Aspergers and what your partner must be experiencing--this whole new understanding of who he is and why he is--as well as what you're experiencing. You need an objective third party who tries to understand each side, not strangers on the internets.
posted by gramcracker at 8:49 AM on December 9, 2008
posted by gramcracker at 8:49 AM on December 9, 2008
An aside - diagnosis of this sort are always nebulous and there are often comorbid conditions that may confuse the issue. It's rather common to have male aspies with OCD and tourettes. I'm really not that surprised that someone receiving a late aspergers diagnosis has gotten compulsive about it.
By definition, though, your SO is not neurotypical and is likely to need some measure of support. This doesn't mean that you should be sacrificially accommodating, rather a 3rd party needs to exercise professional discipline and expertise to formulate a treatment plan and identify coping skills. A neurologist for preference.
In the same way that saying this person has CP or has a learning disability tells you absolutely nothing of value, the label is simply to broad being told "uhh, yeah, Aspergers!" isn't likely to be helpful. At all.
This isn't your fault, it isn't terribly rare, there are things that can be done. Seek help.
posted by mce at 9:01 AM on December 9, 2008
By definition, though, your SO is not neurotypical and is likely to need some measure of support. This doesn't mean that you should be sacrificially accommodating, rather a 3rd party needs to exercise professional discipline and expertise to formulate a treatment plan and identify coping skills. A neurologist for preference.
In the same way that saying this person has CP or has a learning disability tells you absolutely nothing of value, the label is simply to broad being told "uhh, yeah, Aspergers!" isn't likely to be helpful. At all.
This isn't your fault, it isn't terribly rare, there are things that can be done. Seek help.
posted by mce at 9:01 AM on December 9, 2008
I feel for you - this sounds beyond frustrating and hurtful. I don't have any romantic relationship with Aspergers experience, but I have a friend (not in the same city) who after his initial Aspergers diagnosis, exhibited some of the things you describe. We of course are a) just friends and b) communicate through phone/email/IM so it didn't effect me near as much as your partner does you but for months, he was like "I don't get you because I'm different." Even at a distance, it was maddening to hear his excuses for not empathizing or seeming to care. It definitely felt like an excuse. Eventually I think therapy and near 100% of his non-Aspie friends telling him his behavior was a problem helped him get better.
I think gramcracker is spot on about the counseling. Good luck!
posted by pointystick at 9:09 AM on December 9, 2008
I think gramcracker is spot on about the counseling. Good luck!
posted by pointystick at 9:09 AM on December 9, 2008
If you're crying, and he asks frankly, "Why are you sad?" - He's got Aspergers. He's confused, but he cares.
If you're crying, and he shrugs and says, "I don't understand this." - He's being a dick. He is showing off his get-out-of-jail-free card.
Yes. That.
posted by tkolar at 9:41 AM on December 9, 2008 [4 favorites]
If you're crying, and he shrugs and says, "I don't understand this." - He's being a dick. He is showing off his get-out-of-jail-free card.
Yes. That.
posted by tkolar at 9:41 AM on December 9, 2008 [4 favorites]
His new knowledge is for helping him struggle, not for avoiding the struggle altogether.
posted by amtho at 9:50 AM on December 9, 2008 [1 favorite]
posted by amtho at 9:50 AM on December 9, 2008 [1 favorite]
I don't have diabetes but I still understand that diabetics need insulin
Small note: not all diabetics need insulin, just Type 1. Type 2 diabetes have insulin, but either it's poor quality or the body doesn't know how to use it.
That said, and responding to the original poster, when I was finally diagnosed with Type 2 diabetes, I saw EVERYTHING though that new filter. I read and thought a lot and wasn't as fun because when going out to eat I HAD to figure what was in the foods and the size and blah blah blah. And of course I wanted to share that info, because hey, that shit is unhealthy and I care about the people around me, so I should say something right? and so on and so on. Eventually I settled down and concentrated on myself as opposed to others
Diabetes is not Aspergers, so I can't speak to you directly anonymous, but him seeing everything though the new Aspie filter isn't surprising, but at some point it should settle down, but things probably won't go back to the way they were. It's up to you to decide whether that's what you want.
posted by Brandon Blatcher at 10:07 AM on December 9, 2008
Small note: not all diabetics need insulin, just Type 1. Type 2 diabetes have insulin, but either it's poor quality or the body doesn't know how to use it.
That said, and responding to the original poster, when I was finally diagnosed with Type 2 diabetes, I saw EVERYTHING though that new filter. I read and thought a lot and wasn't as fun because when going out to eat I HAD to figure what was in the foods and the size and blah blah blah. And of course I wanted to share that info, because hey, that shit is unhealthy and I care about the people around me, so I should say something right? and so on and so on. Eventually I settled down and concentrated on myself as opposed to others
Diabetes is not Aspergers, so I can't speak to you directly anonymous, but him seeing everything though the new Aspie filter isn't surprising, but at some point it should settle down, but things probably won't go back to the way they were. It's up to you to decide whether that's what you want.
posted by Brandon Blatcher at 10:07 AM on December 9, 2008
Another person confessing to being slightly obsessed with a condition following diagnosis. I was diagnosed with Tourette Syndrome as a teen, and as weird as it is to be happy to be told you have a socially crippling disorder, it was kind of elating. I HAVE A VALID REASON TO BE A FREAK! I'M NOT FAKING IT!
When you've been trying for most of your life to hide the way you are from others and being confused yourself as to why you're that way, having a medical doctor pat you on the back and say you're not imagining it and you're not crazy and everyone else better get used to it is a huge relief.
It's natural to be curious and to read up all you can, like some people have pointed out. I have no idea how much resources exist for those with Asperger's; it seems like there's quite a community built around it. I do know that for me, personally, I grew out of it. There is a pretty limited amount of information available to the layperson out there about Tourette, and once I reached the point where I'd have to be a neurologist to know any more about it, I shelved my Oliver Sacks books and started thinking about other things.
Hopefully he'll grow out of the preoccupation. Like others have said, it's fairly common. However. Being an asshole? Not natural. Not acceptable. I believe you that he was different before; after all, why were you with him for five years otherwise? Nothing, absolutely nothing, gives you an excuse to not put forth an effort to comfort your partner. He can pay attention to an Asperger's mesage board, but he can't look you in the face and listen to you talking? He's not even trying, and you seem to be trying incredibly hard to make this work. That's unfair, and I'm sorry for you.
I hate suggesting the ultimatum, because I think they're manipulative, but I suggest you calmly explain to him, "These are the reasons I am with you. Five years ago, you provided me with caring, comfort, love, and emotional support. I still love you, but all the reasons I had to stay with you have vanished. All this time and effort you have taken into coddling your Asperger's has to be used toward coping with it and still living a normal life with friends, responsibilities, and a girlfriend."
posted by Juliet Banana at 11:00 AM on December 9, 2008 [4 favorites]
When you've been trying for most of your life to hide the way you are from others and being confused yourself as to why you're that way, having a medical doctor pat you on the back and say you're not imagining it and you're not crazy and everyone else better get used to it is a huge relief.
It's natural to be curious and to read up all you can, like some people have pointed out. I have no idea how much resources exist for those with Asperger's; it seems like there's quite a community built around it. I do know that for me, personally, I grew out of it. There is a pretty limited amount of information available to the layperson out there about Tourette, and once I reached the point where I'd have to be a neurologist to know any more about it, I shelved my Oliver Sacks books and started thinking about other things.
Hopefully he'll grow out of the preoccupation. Like others have said, it's fairly common. However. Being an asshole? Not natural. Not acceptable. I believe you that he was different before; after all, why were you with him for five years otherwise? Nothing, absolutely nothing, gives you an excuse to not put forth an effort to comfort your partner. He can pay attention to an Asperger's mesage board, but he can't look you in the face and listen to you talking? He's not even trying, and you seem to be trying incredibly hard to make this work. That's unfair, and I'm sorry for you.
I hate suggesting the ultimatum, because I think they're manipulative, but I suggest you calmly explain to him, "These are the reasons I am with you. Five years ago, you provided me with caring, comfort, love, and emotional support. I still love you, but all the reasons I had to stay with you have vanished. All this time and effort you have taken into coddling your Asperger's has to be used toward coping with it and still living a normal life with friends, responsibilities, and a girlfriend."
posted by Juliet Banana at 11:00 AM on December 9, 2008 [4 favorites]
Therapy is the best idea here and you should brace yourself as this relationship may be over. I just want to add a third possibility for what is going on to your list: He maybe have been faking the earlier emotional self you fell in love with and now that he understands Asperger's, he's out of the closet. He never understood the emotional but is only now free to admit that.
Best of luck to you.
posted by chairface at 11:10 AM on December 9, 2008 [3 favorites]
Best of luck to you.
posted by chairface at 11:10 AM on December 9, 2008 [3 favorites]
Your boyfriend's new habits are common, not just to newly diagnosed autistics but to people with any newly diagnosed condition. The short answer is that if he's otherwise previously been a pretty mature person, he may well "grow out of it;" not the Asperger syndrome itself, but his new fixation with it. But you probably don't want to sit around waiting for that to happen or not.
Slap*Happy, amtho, and Juliet Banana got it absolutely right. Autism is not synonymous with dickheadism, nor is it a rubber stamp authorization to be a dick. It is also not synonymous with an inability to feel or understand emotions. The cliché that gets fed to everyone with a mental health or neurological condition: it's not your fault, but it is your responsibility. Trite, but true. Your boyfriend needs to hear that. Therapy may or may not be useful, but if he seeks it, it should be from someone with experience with people with autism spectrum disorders, or who will at least not inadvertently coddle his unkind behaviors or treat him like an interesting toy.
I'll e-mail you.
posted by jeeves at 11:32 AM on December 9, 2008
Slap*Happy, amtho, and Juliet Banana got it absolutely right. Autism is not synonymous with dickheadism, nor is it a rubber stamp authorization to be a dick. It is also not synonymous with an inability to feel or understand emotions. The cliché that gets fed to everyone with a mental health or neurological condition: it's not your fault, but it is your responsibility. Trite, but true. Your boyfriend needs to hear that. Therapy may or may not be useful, but if he seeks it, it should be from someone with experience with people with autism spectrum disorders, or who will at least not inadvertently coddle his unkind behaviors or treat him like an interesting toy.
I'll e-mail you.
posted by jeeves at 11:32 AM on December 9, 2008
I witnessed a similar scenario befall a couple who had been married for 12 years. "Lisa" and "John" had a seemingly great marriage, but Lisa had grown overwhelmed by her work and family duties. She started antidepressants, and eventually was diagnosed with Bipolar Disorder. Her shrink prescribed additional meds.
Immediately after the diagnosis and new prescriptions, Lisa's personality radically changed. She experienced extreme mood swings, fought bitterly and frequently with John, took a health-related leave from work and began neglecting her family duties.
Concurrently, she joined BiPolar organizations, made online friends with others similarly diagnosed, ceased communications with her former long-term friends, and eventually told John she wanted to separate and divorce. Lisa claimed that finally she knew what was wrong with her and was "setting herself free." But John believed that Lisa was going through a midlife crisis and also may have been reacting adversely to her medications. (After two months on the drugs, she had seizures, night sweats, and two psychotic episodes).
Sadly, this story didn't end well. Against John's wishes, Lisa filed for divorce. She lives alone, still on medical leave from work, and sees John and the kids once a week. Lisa perceives herself as Bipolar first, everything else secondarily. We all still hope she will eventually recover her sense of self and former love of life.
posted by terranova at 11:54 AM on December 9, 2008
Immediately after the diagnosis and new prescriptions, Lisa's personality radically changed. She experienced extreme mood swings, fought bitterly and frequently with John, took a health-related leave from work and began neglecting her family duties.
Concurrently, she joined BiPolar organizations, made online friends with others similarly diagnosed, ceased communications with her former long-term friends, and eventually told John she wanted to separate and divorce. Lisa claimed that finally she knew what was wrong with her and was "setting herself free." But John believed that Lisa was going through a midlife crisis and also may have been reacting adversely to her medications. (After two months on the drugs, she had seizures, night sweats, and two psychotic episodes).
Sadly, this story didn't end well. Against John's wishes, Lisa filed for divorce. She lives alone, still on medical leave from work, and sees John and the kids once a week. Lisa perceives herself as Bipolar first, everything else secondarily. We all still hope she will eventually recover her sense of self and former love of life.
posted by terranova at 11:54 AM on December 9, 2008
this sounds like your boyfriend has become a self-fulfilling prohecy.
my boyfriend just went to a reader/psychic, and she "revealed" some things. for instance, she thought the letter R was significant to him. also, that he may be a male and may work with him (i know, very vague!). well, there is such a person, and now my boyfriend is overdoing it with the amount of attention he pays to this employee who he has not in the past.
i think it can be a natural reaction, because he is now aware of it. also, considering how you said he had never really fit in before, it sounds like he is really trying to fit in with the Asperger's community and experience.
posted by alice ayres at 12:21 PM on December 9, 2008
my boyfriend just went to a reader/psychic, and she "revealed" some things. for instance, she thought the letter R was significant to him. also, that he may be a male and may work with him (i know, very vague!). well, there is such a person, and now my boyfriend is overdoing it with the amount of attention he pays to this employee who he has not in the past.
i think it can be a natural reaction, because he is now aware of it. also, considering how you said he had never really fit in before, it sounds like he is really trying to fit in with the Asperger's community and experience.
posted by alice ayres at 12:21 PM on December 9, 2008
well, when i was diagnosed with a chronic illness (finally!) in early 2007 it kind of consumed me. it had been consuming me for the previous year, in a physical/mental/emotional way, in that i couldn't sleep or go out in the sun or go in the heat or eat a jillion things or use a jillion products and my body was swelling in front of my face. but after i got the diagnosis, i was consumed in a different way. i read all the sparse literature i could find, joined communities online, thought about starting my own community, thought about putting together an "intro to [chronic illness]" packet for my doctors, etc. i finally had a name for what i had and it proved i wasn't just broken in some un-nameable way.
and i've seen this in other people too, so i don't think it's uncommon.
now, i only know a tiny bit about asperger's, but i do think it's normal for him to be immersing himself in the literature and communities and to obsess over it in general. the level of obsession will probably taper off as the months go by and it becomes just his day to day life.
but i agree, if he acted one way before the diagnosis, and another way now (and there was no ACTUAL change in him besides now having a name for his issues), that he is copping out and blaming it on "his disease."
had he ever given any signs of wanting to get out of the relationship in the past? this could be his ticket out.
those are my only thoughts, and not entirely helpful. sorry.
posted by misanthropicsarah at 1:17 PM on December 9, 2008
and i've seen this in other people too, so i don't think it's uncommon.
now, i only know a tiny bit about asperger's, but i do think it's normal for him to be immersing himself in the literature and communities and to obsess over it in general. the level of obsession will probably taper off as the months go by and it becomes just his day to day life.
but i agree, if he acted one way before the diagnosis, and another way now (and there was no ACTUAL change in him besides now having a name for his issues), that he is copping out and blaming it on "his disease."
had he ever given any signs of wanting to get out of the relationship in the past? this could be his ticket out.
those are my only thoughts, and not entirely helpful. sorry.
posted by misanthropicsarah at 1:17 PM on December 9, 2008
follow-up from the OP
Thank you so much everybody. I woke up this morning with a knot in stomach expecting there to be at least a few mefites who snarked at me for some reason or another.posted by jessamyn at 2:50 PM on December 9, 2008
The sympathy made me bawl my eyes out.
"Get-out-of-jail-free card" is exactly the term I have used. I have told him exactly how I feel right now; I've told him at length, but he isn't listening. I am actually sort of worried; it's as though he's losing his grip on reality?
Comforting to hear from others that it is likely to settle down once he gets bored of it -- that does seem the most likely outcome, everything has a honeymoon period right? Though I suspect it may linger a bit longer with my partner due to the Aspie obsessiveness. A question though: how long is too long to wait for him to get over the initial rush of diagnosis? A year? Two?
I do know that things won't ever go back to the way they were before. And that's fine. Change is inevitable. But I want the "new normal" to be a safe place for me.
Chairface, I think your suggestion is viable. In fact he seems to be suggesting this is the way it is. I guess it just feels like a lie. But if it's true, and he has manufactured all this emotional stuff, then he's a genius and it just goes to show how good Aspies can be at acting. Because not only was he a caring person, he is actually one of the most caring, thoughtful people I have ever met. Quirky, flawed, but still with a good kind heart (or so I thought!)
We are luckily seeing a therapist that specialises in Aspergers. I don't know how much it will help given he is only going for my benefit, not his/ours. He somehow simultaneously believes he's in a world of pain, but that he doesn't need therapy (fatalistic view that he can't be fixed, I guess? Plus it seems he doesn't want to "be fixed".)
The most helpful thing was the unanimous sympathy from you guys about how frustrating this is for me and how unacceptable this behaviour is on his part.
Before his diagnosis, I didn't mind whether he changed or not. He was a pleasure to be around, even though he was very sooky sometimes. I honestly thought he would get diagnosed and maybe find some freedom; stop being such a perfectionist about social encounters and stress less. I had no idea he would include ME in his list of "things I don't have to spend the energy on anymore."
I don't want to make excuses for him any longer though, or accept his excuses. It's helpful to know he will probably get over this eventually but I'm considering taking some time out and putting space between us so he can deal with this alone--I feel guilty even saying that, but he hasn't asked me for help in any way so I guess he doesn't really need my support.
The therapist will give me some kind of direction; I hope I'm slightly less confused after the appointment. I certainly feel less confused after reading your responses. Your pieces of advice have given me the extra boost of strength I needed. Thank you mefites x x x
PS Please keep the stories coming about post diagnosis changes in personality. Each one I read makes me feel a tiny bit better.
PPS I just noticed a number of people have personally emailed me re: this post. I am truly overwhelmed. Your support means a lot to me. :)
He is using his diagnosis to avoid responsibility and the time/effort it takes to maintain relationships. I suspect that he believes that his 'excuse' makes it so that other people will love him regardless and understand that he is unable to console/empathize with them.
Part of it too is the comfort one gets from fitting into a group - he wants to fit in, so he is acting like the folks he 'talks' to on his website.
My sister did this, she got over it. Maybe he just needs a swift kick.
posted by Acer_saccharum at 9:30 PM on December 9, 2008
Part of it too is the comfort one gets from fitting into a group - he wants to fit in, so he is acting like the folks he 'talks' to on his website.
My sister did this, she got over it. Maybe he just needs a swift kick.
posted by Acer_saccharum at 9:30 PM on December 9, 2008
When I was a teenager, my mother was diagnosed with fibromyalgia after years and years of chronic, inexplicable pain. She'd had surgeries, she'd taken pills, she'd been on crutches, but nothing had helped. The diagnosis came as such a relief to her that I don't think she even cared what it was; she was so happy that her pain had a name, that she wasn't crazy, that she wasn't alone.
For several years after that, her behavior changed somewhat. Before the diagnosis, she'd been willing and able to run errands, go for walks, help with meals and dishes, etc. After the diagnosis, she stopped doing all of these things. It felt to me like the word "fibromyalgia" had given her permission to avoid doing anything she didn't want to do.
I remember becoming particularly angry with her on a family vacation. There were eleven of us staying at my grandparents' house, and everyone was pitching in with cooking and cleaning and dishes, except my mother. She'd sit in the living room with her book or her needlepoint or whatever until dinner was ready, then she'd sit down and eat, then when she was done she'd go right back to sitting in the living room, without even carrying her own plate to the kitchen.
My father seemed to take it in stride, but my sister and I were annoyed. She was perfectly capable of doing all the things she'd done pre-diagnosis, and it even seemed like she was in less pain than she'd been before. But she was thinking of herself as "a person with fibromyalgia," and a person with fibromyalgia shouldn't be able to do those things, should they?
Fortunately, after awhile this behavior leveled off, and now she doesn't do it anymore. She's still got days where she's in pain or isn't feeling right, of course, but she's careful to say things like, "Would you mind getting the groceries for me? I need to lay down for awhile," instead of just expecting those things to be done for her.
I hope that your partner becomes accustomed to his diagnosis the way my mother did. Therapy seems like a fine idea. Good luck!
posted by bluishorange at 7:57 AM on December 10, 2008
For several years after that, her behavior changed somewhat. Before the diagnosis, she'd been willing and able to run errands, go for walks, help with meals and dishes, etc. After the diagnosis, she stopped doing all of these things. It felt to me like the word "fibromyalgia" had given her permission to avoid doing anything she didn't want to do.
I remember becoming particularly angry with her on a family vacation. There were eleven of us staying at my grandparents' house, and everyone was pitching in with cooking and cleaning and dishes, except my mother. She'd sit in the living room with her book or her needlepoint or whatever until dinner was ready, then she'd sit down and eat, then when she was done she'd go right back to sitting in the living room, without even carrying her own plate to the kitchen.
My father seemed to take it in stride, but my sister and I were annoyed. She was perfectly capable of doing all the things she'd done pre-diagnosis, and it even seemed like she was in less pain than she'd been before. But she was thinking of herself as "a person with fibromyalgia," and a person with fibromyalgia shouldn't be able to do those things, should they?
Fortunately, after awhile this behavior leveled off, and now she doesn't do it anymore. She's still got days where she's in pain or isn't feeling right, of course, but she's careful to say things like, "Would you mind getting the groceries for me? I need to lay down for awhile," instead of just expecting those things to be done for her.
I hope that your partner becomes accustomed to his diagnosis the way my mother did. Therapy seems like a fine idea. Good luck!
posted by bluishorange at 7:57 AM on December 10, 2008
This is incredibly normal on his part, actually. He is experiencing a reworking of his selfidentity. It's a stage.
Give it time and see if the pendulum doesn't swing back a little.
posted by St. Alia of the Bunnies at 9:21 AM on December 10, 2008
Give it time and see if the pendulum doesn't swing back a little.
posted by St. Alia of the Bunnies at 9:21 AM on December 10, 2008
I am sorry to say that you are being so selfish..all your comments and questions are about the lack of attention you are getting..why don't try to fulfll your own soul and life with activities, hobbies , friends , books, etc..and leave him alone to deal how he can best at the moment to solve his big problem?
Don't you think he did enough many years to look after you when you really needed it? why dont YOU concentrate NOW on HIS problems as much as him, and help him to get trhough this didd period? HE wont be 100 years like this, just wait, be patient, be loving, do EVERYTHING you can do for him, and talk to him as much as he wants about his concerns..he needs NOW a FRIEND a real lover, not someone to look after..YOU can look after yourself. I been trough a lot in my life, I've loved, and lost, I live alone at the moment, and I dont need ANYONE to keep doing things for me to feel better..I can find ways to find attention or anything I need when I need, even in books. If I had a partner now who gave me love when I needed I would be looking after him till the end of my days , and I would fulfill my life in other ways while the situation get better, if not,.. That's a proof of unconditional love if you want it back.
Good luck
posted by zulo at 3:45 PM on December 13, 2008
I am sorry to say that you are being so selfish.
OP, there is absolutely nothing in your post that suggests selfishness. Nothing.
posted by A Terrible Llama at 2:30 AM on December 14, 2008 [1 favorite]
OP, there is absolutely nothing in your post that suggests selfishness. Nothing.
posted by A Terrible Llama at 2:30 AM on December 14, 2008 [1 favorite]
Yeah, the anonymous question asker isn't selfish in the slightest - she's a lot more patient and understanding than most would be. Love's not unconditional, which is why there are those who've loved then lost that love. It's negotiated and re-negotiated constantly here in the grownup world.
Telling her to go read a book or get a hobby instead of pursue love, comfort and affection? Dude, just... dude.
posted by Slap*Happy at 6:23 PM on December 16, 2008
Telling her to go read a book or get a hobby instead of pursue love, comfort and affection? Dude, just... dude.
posted by Slap*Happy at 6:23 PM on December 16, 2008
First he cut out dairy, then he cut out gluten. Tonight he mentioned eating less meat but I told him that was going way overboard and he agreed! Could lack of nutrition be causing/adding to this personality change?
If he really does have celiac disease (and there are oodles of sites out there claiming strong association between Aspergers and CD), I think some of these personality changes could be due to cutting gluten out of his diet.
CD has been linked to lots of neurological problems:
We read with great interest the recent study reported by Zelnik et al1 on the relationship between celiac disease (CD) and neurologic disorders. The authors screened patients with CD and showed a strong association not only between CD and specific neurologic disorders such as cerebral ataxia, chronic neuropathies, myoclonic ataxia, progressive leukoencephalopathy, and dementia but also between CD and milder and more common neurologic conditions such as headache, learning disabilities and attention-deficit/hyperactivity disorder, development delay, and hypotonia.
The authors of that letter claim that the brain regions of CD sufferers with those problems have a lack of blood flow-- meaning essentially that the brain shifts activity away from the areas under attack by the immune system-- and that cutting out gluten could restore that blood flow and associated function to those brain regions:
In conclusion, we think that the presence of regional cerebral blood flow alteration in CD patients could play a pathogenetic role in psychiatric and neurologic manifestations, including the more common problems such as migraine headache and learning disabilities. In this connection, in the longitudinal study correctly quoted by the authors, our group showed that migraine patients with CD had regional cerebral blood flow alteration evaluated by SPECT; 6 months of GFD improved both SPECT abnormalities and the frequency, duration, and intensity of migraine.4 Finally, because the hemodynamic changes in CD seem to be linked to disease activity and resolved after GFD,3–5 a GFD should be started as soon as possible and also in patients who do not show the classic form of CD.
In the case of your partner, I think this could mean that giving up gluten is allowing him to use parts of his brain that haven't been doing much for a while, and that, as a result, his personality has changed.
Even if that's true, though, I don't see why it would have to be permanent; he may just need a little time to rebalance things in his brain and reclaim the aspects of himself that you found lovable in the first place.
posted by jamjam at 4:13 PM on December 18, 2008
If he really does have celiac disease (and there are oodles of sites out there claiming strong association between Aspergers and CD), I think some of these personality changes could be due to cutting gluten out of his diet.
CD has been linked to lots of neurological problems:
We read with great interest the recent study reported by Zelnik et al1 on the relationship between celiac disease (CD) and neurologic disorders. The authors screened patients with CD and showed a strong association not only between CD and specific neurologic disorders such as cerebral ataxia, chronic neuropathies, myoclonic ataxia, progressive leukoencephalopathy, and dementia but also between CD and milder and more common neurologic conditions such as headache, learning disabilities and attention-deficit/hyperactivity disorder, development delay, and hypotonia.
The authors of that letter claim that the brain regions of CD sufferers with those problems have a lack of blood flow-- meaning essentially that the brain shifts activity away from the areas under attack by the immune system-- and that cutting out gluten could restore that blood flow and associated function to those brain regions:
In conclusion, we think that the presence of regional cerebral blood flow alteration in CD patients could play a pathogenetic role in psychiatric and neurologic manifestations, including the more common problems such as migraine headache and learning disabilities. In this connection, in the longitudinal study correctly quoted by the authors, our group showed that migraine patients with CD had regional cerebral blood flow alteration evaluated by SPECT; 6 months of GFD improved both SPECT abnormalities and the frequency, duration, and intensity of migraine.4 Finally, because the hemodynamic changes in CD seem to be linked to disease activity and resolved after GFD,3–5 a GFD should be started as soon as possible and also in patients who do not show the classic form of CD.
In the case of your partner, I think this could mean that giving up gluten is allowing him to use parts of his brain that haven't been doing much for a while, and that, as a result, his personality has changed.
Even if that's true, though, I don't see why it would have to be permanent; he may just need a little time to rebalance things in his brain and reclaim the aspects of himself that you found lovable in the first place.
posted by jamjam at 4:13 PM on December 18, 2008
Late to the party, but anyhow.
I'm Aspergers. In fact, I am at the end of the Aspergers scale that gets confused with full-blown autism. I know all about social awkwardness, obsessiveness, anxiety, lack of empathy, etc. I've considered making tshirts.
In light of that: he's being a jerk.
Being Aspie means you need to spend more energy and care on social interactions, not less, because yeah, it's harder for you. Which does, unfortunately, mean that social things can be more tiring for you than most people. However - having AS does not absolve you of your responsibility to your friends, partners, or family to be a reasonable human being, or make reasonable efforts to integrate yourself. No, it's not easy, but suck it up and deal with the hand you've been dealt.
People who use AS as an excuse to be wankers annoy me. And it is an excuse; especially if they've exhibited other behaviour in the past. Those aren't skills you just ... lose.
posted by ysabet at 1:47 AM on December 28, 2008 [1 favorite]
I'm Aspergers. In fact, I am at the end of the Aspergers scale that gets confused with full-blown autism. I know all about social awkwardness, obsessiveness, anxiety, lack of empathy, etc. I've considered making tshirts.
In light of that: he's being a jerk.
Being Aspie means you need to spend more energy and care on social interactions, not less, because yeah, it's harder for you. Which does, unfortunately, mean that social things can be more tiring for you than most people. However - having AS does not absolve you of your responsibility to your friends, partners, or family to be a reasonable human being, or make reasonable efforts to integrate yourself. No, it's not easy, but suck it up and deal with the hand you've been dealt.
People who use AS as an excuse to be wankers annoy me. And it is an excuse; especially if they've exhibited other behaviour in the past. Those aren't skills you just ... lose.
posted by ysabet at 1:47 AM on December 28, 2008 [1 favorite]
« Older Yes we can find cheap Obama nesting dolls! | How to fix Christmas tree lights in series? Newer »
This thread is closed to new comments.
posted by headnsouth at 8:19 AM on December 9, 2008 [1 favorite]