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kfisherx
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21 Nov 2010, 3:07 pm

I recently lost my Father which is what prompted me to see a shrink and resulted in my dx of aspergers. It is obvious to me that this guy is a bit perplexed as to how to proceed with me given that I do not ascrrbe to NT rules of grieving. I have been desperately seeking any sort of studies or books or information on adult aspergers and grieving strategies. I am wondering if anyone here knows of any resources for this...



Daedelus1138
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21 Nov 2010, 3:58 pm

I have asperger's, and umm, i don't notice my experience of grief being that different from anybody else.



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21 Nov 2010, 4:13 pm

Not a specialist, but I think that people with autistic spectrum disorders have increased risk of the so-called unresolved or delayed grief - because of the alexithymia and the somewhat flattened affect - which potentially might have long-term consequences. Also, higher risk of precipitating a major depressive episode. But it is a risk, not a definitive outcome.



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21 Nov 2010, 4:30 pm

I experienced grief earlier than most people - in third grade. I continued to lose at least one relative or friend every 2 years for the rest of my life. In seventh grade i really crashed after witnessing my last grandparent die. The only thing that helped me was time.


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kfisherx
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21 Nov 2010, 6:37 pm

Severus wrote:
Not a specialist, but I think that people with autistic spectrum disorders have increased risk of the so-called unresolved or delayed grief - because of the alexithymia and the somewhat flattened affect - which potentially might have long-term consequences. Also, higher risk of precipitating a major depressive episode. But it is a risk, not a definitive outcome.


Yes, this is where I am finding issue. There are those who are rather emotional/autisic such as Sean Barron and then those who are more "flat" (Temple Grandin). I am a flat/logic sort of person and really struggle to understand emotions in general. I accept that people are emotional, but I don't get it beyond that really except how I can logically piece it together.

My problem is that since my Father's death I have been having major audio/visual hypersensory issues. I am also stimming like mad now. Pacing, rocking, all the good things. I assume it is a grief managment thing due to the correlation of the incidents. His first thought is that I am practicing grief avoidance. I am trying to be open minded and say, "okay" but next comes the question, "how do I experience grief then?" He asks questions like "Can you look at pics of your Father without crying?" My reply is that of course I can because that is in the past and crying doesn't help. He spends a lot of time telling me about the benefits of crying... Okay so I am supposed to cry...

So now what? I don't get it. I am wondering if there is any sort of documentation on grieving and autism anywhere and if there are alternatives to this logical but not applicable therapy of actually grieving. I would like to be able to get rid of the stiming and hypersensitivity that is going on...



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21 Nov 2010, 6:52 pm

I blamed myself after my dad's death. I was unresponsive in the hospital. I didn't see him as often as my other siblings. Avoidance and distraction was my way of coping. I know now that I just didn't know how to deal with seeing my dad in the hospital.
I'm really over empathetic about any death I hear about now too. Whether it's a song about death, in the news or people talking about it. I'll be on the verge of tears.
So I do think we need a different kind of therapy.
I'm doing better now. I miss my dad terribly and am still over empathetic about death but I don't blame myself for my 'flat effect.'


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Daedelus1138
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21 Nov 2010, 7:20 pm

kfisherx wrote:
Severus wrote:
My reply is that of course I can because that is in the past and crying doesn't help. He spends a lot of time telling me about the benefits of crying... Okay so I am supposed to cry...


Definitely alexithymia, you cannot see that your anxiety is due to unacknoweldged grief.

Crying helps alot of people, it doesn't undo somebody being dead but it there are other things to iit, its not going to fix everything of course but it helps many people. We are embodied beings, crying is one way we deal with pain that involves that embodied existence and doesn't rationalize, or rather repress, pain like you are doing now. (scientificly, crying signals to others we need help, which is maybe one reason we find it is productive because our body responds to it positively in times of grief). Other people might get involved in art or play music. The important thing is, process the pain in some way, or it will come out as psychosomatic complaints like you are experiencing. I had the same issues sometimes, i would get high blood pressure from stress, until i stopped compartmentalizing myself and dissosciating from my feelings.. This was a few months ago, i was becomming too intellctual and not living through my heart (yes there's a difference and yes its quite real).



Last edited by Daedelus1138 on 21 Nov 2010, 7:55 pm, edited 1 time in total.

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21 Nov 2010, 7:32 pm

kfisherx wrote:
Severus wrote:
Not a specialist, but I think that people with autistic spectrum disorders have increased risk of the so-called unresolved or delayed grief - because of the alexithymia and the somewhat flattened affect - which potentially might have long-term consequences. Also, higher risk of precipitating a major depressive episode. But it is a risk, not a definitive outcome.


Yes, this is where I am finding issue. There are those who are rather emotional/autisic such as Sean Barron and then those who are more "flat" (Temple Grandin). I am a flat/logic sort of person and really struggle to understand emotions in general. I accept that people are emotional, but I don't get it beyond that really except how I can logically piece it together.

My problem is that since my Father's death I have been having major audio/visual hypersensory issues. I am also stimming like mad now. Pacing, rocking, all the good things. I assume it is a grief managment thing due to the correlation of the incidents. His first thought is that I am practicing grief avoidance. I am trying to be open minded and say, "okay" but next comes the question, "how do I experience grief then?" He asks questions like "Can you look at pics of your Father without crying?" My reply is that of course I can because that is in the past and crying doesn't help. He spends a lot of time telling me about the benefits of crying... Okay so I am supposed to cry...

So now what? I don't get it. I am wondering if there is any sort of documentation on grieving and autism anywhere and if there are alternatives to this logical but not applicable therapy of actually grieving. I would like to be able to get rid of the stiming and hypersensitivity that is going on...


I don't know of any methods, but Severus's post reminded me of when my grandfather died. I felt nothing for a whole year and then one day it hit me. I didn't know that had a name. Regarding your therapist seeming to try to persuade you to cry, I know that feeling of there just being nothing, no desire to cry.

I think it's natural for your stimming and hypersensitivity to increase. Sometimes I think there are emotions that I don't even know are going on in my mind yet, but all the signs point to something going on in my mind, I just have no labels for it and sometimes I'm unaware of it until the feelings are huge. At least you have noticed your increased stimming. Whether its root is grief or not is hard to say because it could be in response to all the discussion about emotion which can be difficult and to all the things that go on around a death in the family.

I hope you're able to find what you're looking for.

We just had a death in my family this week, too. She was a very kind person and I felt affection for her, but I don't know that I feel grief. I feel sorry for her immediate family and anxiety about the way she died, but not grief.

If you find anything about grief and AS, would you post it here? I'd like to see it, too.



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21 Nov 2010, 7:38 pm

Also, a close friend of mine died a few years ago and I never felt any feelings of loss at all. I've not suffered any ill effects from not experiencing grief over her. She was very close to me, too.

Do there have to be drawbacks when one doesn't feel grief? I wonder if the NT grief model just isn't applicable in your situation.



Daedelus1138
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21 Nov 2010, 7:59 pm

When my grandfather died, i was sad, but mostly had alot of guilt. When my cat died, i was hurt really bad, cried alot. It took 6 months of grieving really to move on, even then, a year later, i was still occasionally feeling pain.

I think it depends on how unexpected the death is too. And its really going to be individual. There's no right or wrong as long as you aren't ruining your physical or mental health, everybody will respond differently.



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21 Nov 2010, 11:16 pm

I've never really cried over the deaths of family members and relatives, but I've cried off and on about the passing of Pete Quaife. This is something that I can't be convinced or coarsed into getting over.


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kfisherx
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22 Nov 2010, 2:29 am

Daedelus1138 wrote:
kfisherx wrote:
Severus wrote:
My reply is that of course I can because that is in the past and crying doesn't help. He spends a lot of time telling me about the benefits of crying... Okay so I am supposed to cry...


Definitely alexithymia, you cannot see that your anxiety is due to unacknoweldged grief.

Crying helps alot of people, it doesn't undo somebody being dead but it there are other things to iit, its not going to fix everything of course but it helps many people. We are embodied beings, crying is one way we deal with pain that involves that embodied existence and doesn't rationalize, or rather repress, pain like you are doing now. (scientificly, crying signals to others we need help, which is maybe one reason we find it is productive because our body responds to it positively in times of grief). Other people might get involved in art or play music. The important thing is, process the pain in some way, or it will come out as psychosomatic complaints like you are experiencing. I had the same issues sometimes, i would get high blood pressure from stress, until i stopped compartmentalizing myself and dissosciating from my feelings.. This was a few months ago, i was becomming too intellctual and not living through my heart (yes there's a difference and yes its quite real).


Oh CRAP! Another freak'n label!! ! And this one really fits me too. I am a Storm Veteran and the Doc also dug up PTSD issues with me along with avoidance. Good Lord, I am a flipp'n mess. How the hell do I get out of this?? Storm was 20 years ago for cripe's sake. I feel like that should be done by now. I did not do anything wrong. My Father's death was exceedingly traumatic but again I have no regrets, had a great relationship with him, etc. I don't really have "feelings" that I need to cry or that I can otherwise tell but these stupid stimming/hypersensitiviy issues are coming out like I was a kid again. These are causing me to go to hell in a hand-basket from anxiety and lack of focus. I have an amazing job and a good life. Before 3 weeks ago I did not acknowledge my aspergers label (even though several people tried to pin it on me) Anyway, I want to keep these things. How did you stop intellectualizing and get in touch with your heart?



kfisherx
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22 Nov 2010, 2:52 am

happymusic wrote:
If you find anything about grief and AS, would you post it here? I'd like to see it, too.


Of course I will update if I find anything. I don't think NT type therapy is going to cut it for me. It sounds like I gotta go through PTSD and freak'n alexithymia on my path to a calmer life. Uggh... And here I budgeted 3-5 sessions total figuring that I could get through this pretty quickly and back to a calmer life....



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22 Nov 2010, 3:47 am

hey kfisherx.

I have total alexithymia.
If someone asks me, (or I ask myself) "how do I feel?", I have no idea how to answer that.
So how to deal with life?

I think that a lot of my emotional non-processing is due to sensory processing jumbles.
Basically I can't tell the difference between a "feeling" that is caused by sensory inputs and "feelings" that are representative of emotional states. Similarly, I can see how emotional states can precipitate sensory disorder, such as uncomfortable levels of sensitivity.

I also notice that it takes a looooong time, sometimes years, for me to effectively process emotional stress or traumatic situations.

I am also waaay off the end of the charts on the systematic thinking spectrum, which is about as useful for emotional processing as, uh... you think of a metaphor. Basically emotions are not logical.

Since I do not experience identifiable emotional states, the challenge is to integrate my intellect and my body. This creates balance and a functional life. I have to use my logic to do this, but this is not the same as intellectualizing, which implies avoidance of reality.

What *I* find helpful are these ideas. You may find these helpful, or not.

1. I try to RELAX. I do not feel pressured by other people's ideas of the "correct" grieving process, eg. crying. Crying just makes my eyeballs hurt, though I do cry randomly while watching movies. I do not feel defective or anxious that I experience life differently.
Alexithymia is NOT the same as avoidance, or repression, or PTSD, or being psychologically damaged. It is neurological: brain wiring, not mind content.
I try to learn how my own brain functions, so I can work with it. This is very important, especially as I am only recently acknowledging/discovering my AS label. I read widely; I think which dimensions really do fit me; I develop ideas that work for my life.

2. I allow engagement in physical activity eg. exercise, stimming, whatever it's called (*as long as these are not injurious*). These activities are not stupid, nor backward. They are the way that my body processes data. I seek new activities eg. swimming, rollerskating, dancing to loud music, which give me socially acceptable movement opportunities. I also take practical and constructive steps to deal with my sensory sensitivities such as noise, like using earplugs to reduce distraction, and making sure that I have time out. The goal is to make a deliberate choice to move, rather than unconsciously or habitually stimming.

3. I make sure that I have one good friend who I check in with, weekly. This friend gets a regular updated picture of my ok-ness, and gives me perspective. I talk to a counsellor when I think I need new ideas. I don't have to accept *everything* a medical practitioner says about me, though I do take notice.

4. routines can be very useful when I am feeling agitated or over sensitive.

Well, it's late down here at the bottom of the world!
I hope those ideas help,
cheers
manBrain (woman's body) go figure!



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22 Nov 2010, 4:20 am

Oh, kfisherx, it's not fair, looks like they are adding another burden on you. As if it is not enough that your father died, now you have to face the public opinion that if you don't cry your eyes over him (sorry), then you are callous and insensitive or perhaps in denial.

I think that every person grieves in a different way and needs a different amount of time. I see your hypersensitisation issues and increased stimming as signs that you are in distress, in which the death of your father is only one part, the other being that you are bewildered by the fact that all the world has different expectations from you. I know how it feels. I have lost almost each and every one of my family members and a couple fo close friends starting from age 15 and now I look at it, I have unresolved grief issues over almost all of them. It manifests mainly by exagerrated grief reaction over symbolic losses (pet deaths, breakups, etc.). But then percentage of unresolved grief actually might be as high as 60 % in general population, so it's not only the ASD people who get it.
I know you feel terrible at the moment, but believe me, whatever it is, it goes away with time. Give yourself some time, isolate as good as you can against annoying stimuli and I think you may use any stim you feel like, as long as it not harmful, as other members said above. It will pass.