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kfisherx
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26 Dec 2011, 6:53 pm

About 18 months ago I was desperately searching for anything I could find on grieving and the ASD person. Today, I am wrapping up the article which is the only one on this topic that actually offers practical advice to the person with ASD as well as their caregivers and therapists on this topic.

http://asdculture.wikispaces.com/Grief+and+ASD

If anyone knows of any other resources on this topic please advise.

Also feel free to comment here for changes to this article.



Verdandi
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26 Dec 2011, 8:34 pm

I'm glad you wrote this. I don't remember if I mentioned the first time I seriously thought I was autistic was around the time my grandmother died, and I went through all of this while wondering why I didn't react the way anyone else was reacting. I did try to be supportive to other family members, but I primarily needed/wanted to be alone.

I didn't have the same sensory shutdowns you did, where everything was reduced to its component parts (that happens to me, but not in this instance) but I found it extremely difficult and unpleasant to be around people and unexpected changes to my routines and plans were extremely disruptive to the point of shutdown.

I also isolated myself from people online as well as off. I am not sure when things improved.

Also, your chart at the bottom is helpful - I constantly swing between interacting with people, committing too much time/energy, going dark and talking to no one, and repeating the cycle.

This is helpful.



melvin-z
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26 Dec 2011, 8:58 pm

Interesting article. My father died in March of this year, after a long illness, during which I found myself in a situation similar to yours. My family left it to me to deal with doctors and treatments as well as the decision about the DNR, because it seems they see me as 'hard'.

I don't think I've dealt with my grief yet. I don't know.



Orr
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26 Dec 2011, 9:50 pm

I visited this website today looking specifically for information on grieving and ASD. For me, that article was the most helpful, and easiest to relate to item I have read on ASD by a wide margin. Having read it, I can understand, and think I will be better able to cope with a lot of issues, emotional, and social, which trouble me. Typically, on reading articles regarding ASD, I am disappointed by not experiencing anything referred to in my previous sentence.

Thank you.


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seekingtruth
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26 Dec 2011, 10:00 pm

Wow, thank you for this!

If I had any doubt before that I have Asperger's I've lost it now as I fit so well with what you wrote.

This is very helpful for me as my grandfather committed suicide last June and I started to feel grief in September. At the beginning of the grieving process I thought I was going crazy, every thought was so disjointed, scattered all over the place, I couldn't make sense of the simplest things. All the 'tools' I've aquired over my lifetime that help me function depsite my 'off' sense of reality were no longer accessable to me and I really, really thought I'd lost my mind. Felt like I'd had a lobotomy.

Luckily I'm a member of a group that has workshops for these kinds of things and with that help I was able to feel the grief and make friends with it and let it do it's job. Now there is a cleansing feeling where before there was just a feeling of nothing, but a scary nothing, the kind that makes you wonder why you aren't feeling what others are feeling, thinking there is something in-human about myself kind of feeling.

I still wonder if my 'grief' is different then others' but whatever it was, when I stopped, stopping it I let it flow and came through on the other side feeling very different and almost like I'd gotten a fresh start with a reset button. Hard to explain.


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kfisherx
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27 Dec 2011, 12:11 am

Thanks for the reviews and for the PMs with comments everyone. This article is the only one of its kind that I have found in the past 18 months of searching. I think it covers a HUGE hole in the current PsyD type documentation. I hope it gets used now.



confusedgeek
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27 Dec 2011, 8:10 am

My father died in 2010.

I was horrified at my own ability to disconnect.

Obviously, I was really sad, because it was sudden and I was very close to him. Yet, I was able to be back at work functioning at a 100% in 3 days, and socializing like I usually do in even less time than that. I pushed it back, never talked about it.

I thought the whole idea of a funeral/wake/etc. was absurd, and couldn't get myself to follow social norms.

I think this is the first time I ever mention it.



Cascadians
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27 Dec 2011, 11:05 am

Thank you for this article.

My autism was safely in the background, manageable and barely noticeable, until my husband of 19 years had a severe mid-life crisis, flipped his personality, became a monster, ran off with a married woman and divorced me. The shock, horror and grief triggered an autism regression where all kinds of symptoms surged to the forefront and robbed my executive function.

True there's very little written about autism regression in adults, but stress and grief can definitely cause a big setback. I actually did not even remember a distant childhood diagnosis of autism until my (ex) ran away and I got so ill that I began researching to try to figure out what the heck was wrong with me.

I think aspies are loyal and true and form deep attachments to those few persons who are willing to interact, so loss is very hard to process and work through.



drichpi
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27 Dec 2011, 11:18 am

This is an excellent article, and I've found that the advice works in other areas than grief as well. The only suggestion I could make is to offer links or mouse-over popups for those of us who are not as familiar with aspie acronym-speak as others.

For example, I have no idea what "Some sources recommend 2 to 3 times the amount of time for ITs for CBT" means.

Thank you for posting the article.



SylviaLynn
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27 Dec 2011, 11:35 am

Outstanding. I wish I'd had this article plus the knowledge that I am likely on the spectrum when my son was stillborn 13 years ago. It explains much.

The one thing I might add is that grief, however it is experienced, is a cyclical process rather than a stage process.


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nemorosa
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27 Dec 2011, 11:45 am

Good article Karla.

My recent experience of grief was over someone whom I hadn't seen in nearly 20 years (though for personal reasons still very significant to me). Nearly everyone seemed puzzled by how her passing hit me. I wonder if such long lasting and intense attachments to people are a common feature of those with ASD. Nothing has ever had such a profound effect before. My ability to function was severely reduced in ways similar to how you describe for nearly 3 years. From observation it seems to me that most people have an intense emotional period of a couple of weeks or months of and then are able to move on, whereas my poor brain seemed caught in an infinite loop.



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27 Dec 2011, 1:37 pm

I was 12 years old when my Granny passed away from cancer. I had been told that she had this nasty illness called Cancer but she had already recovered from it once, so in my mind I couldn't see her NOT pulling through. When Mum told us (my brother too) that she had died, I felt nothing initially. It was about half an hour later that I started to cry uncontrollably. One thing I think is REALLY important to note is that the person with ASD should be included in the WHOLE funeral service regardless of whether you think they understand or not (they might be more aware than you think).

My story:

We went up to Yorkshire for my Granny's funeral. Being 12, I was unaware about what happened at funerals. I was not actually allowed to go to the funeral. I didn't understand what was going on while I was left at a Great aunt's house, so when I was taken to a party, which I now know was the wake, I was disgusted. My Granny was DEAD how dare they have a PARTY! In my mind a party meant happiness. Without the context of the party (that it is to celebrate the person's life after the funeral) I saw it as very disrespectful and for many years afterwards I felt a real resentment towards some of my family members for what they had 'done'.

It was over a year later when my Great Grandma passed away peacefully aged 93. This time I was allowed to attend both the funeral AND the wake. I spent a whole year thinking that it was a party celebrating her death! I still struggle to link the two events together and I almost can't imagine the funeral happening with my Granny because the specific memory is not there in my mind.
_________________________________

So that is my point about why the person with ASD should be included.

Unfortunately I was hit by grief again this year when my rabbit passed away aged 8. It was quite sudden because she came down with pneumonia and we had to have her put to sleep. Until this point I had been going out by myself and was getting ready to become more independant. As soon as Jen died, all of my plans died with her. My autistic symptoms worsened significantly after she died.

If you want any more information either ask on this thread or PM me, I am very happy to help.


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Verdandi
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27 Dec 2011, 4:12 pm

One thing that I don't understand is that when people die, my reactions are not very tangible or visible to me (or possibly to anyone else). I don't recall ever crying over a person's death - my grandparents, my great grandmother, my (foster) sister. But my pets get fully visible emotional reactions.



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27 Dec 2011, 7:50 pm

Verdandi wrote:
One thing that I don't understand is that when people die, my reactions are not very tangible or visible to me (or possibly to anyone else). I don't recall ever crying over a person's death - my grandparents, my great grandmother, my (foster) sister. But my pets get fully visible emotional reactions.


^^^This. I went through 2 years of self loathing for not reacting 'properly' to my mother's death. I had a deep, all engrossing sense of loss but I never really 'grieved'. My father forced me to go to grief counceling and all I got from it was that I wasn't doing it right. The councellor swore I was stuck in denial. Unfortunately, I was clear and rational and hurting to an extreme I've never felt before but it never showed outwardly. What kind of monster doesn't cry when their mother dies?

Lo and behold... there is a reason...



kfisherx
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27 Dec 2011, 9:29 pm

draelynn wrote:
Verdandi wrote:
One thing that I don't understand is that when people die, my reactions are not very tangible or visible to me (or possibly to anyone else). I don't recall ever crying over a person's death - my grandparents, my great grandmother, my (foster) sister. But my pets get fully visible emotional reactions.


^^^This. I went through 2 years of self loathing for not reacting 'properly' to my mother's death. I had a deep, all engrossing sense of loss but I never really 'grieved'. My father forced me to go to grief counceling and all I got from it was that I wasn't doing it right. The councellor swore I was stuck in denial. Unfortunately, I was clear and rational and hurting to an extreme I've never felt before but it never showed outwardly. What kind of monster doesn't cry when their mother dies?

Lo and behold... there is a reason...


THIS is exactly why this article is needed and why it is so revolutionary. I am asking these caregivers to allow us OUR way of grieving and to make sure that we know that our way is RIGHT too. I am telling other ASD people that "our grief is not like their grief" and that our way is RIGHT too. I am offering ways to bridge the two cultures. :) This is very exciting work for me because it is exactly what drove me into this whole advocacy thing.

My grief therapist was actually pretty good. He tried to get me to do all the NT stuff but eventually just told me that he was stumped. He told me there is a hole in the documentation here. WE are going to fill that hole and that void with this article and others like it. :)