Thursday, March 3, 2011

Asperger's and Death

Death is not easy for anyone to accept. When a friend or family member dies, most people handle this devistation by crying or grieving in some other way and go to friends and family for support. Do people with Asperger's syndrome grieve differently? In an email exchange, famous Asperger's authority Tony Attwood told me that many people with Asperger's syndrome use knowledge and information to handle their grief rather than seeking affection from others. 


In Attwood's book The Complete Guide to Asperger's Syndrome, Attwood relates an incident in which a boy's father was away doing a photo shoot on a war. The father had been missing for a few days and everybody was worried. The boy kept asking his mother about what weapons each side of the war was using and how many people were dying. When his father did come back, the boy asked Dad how many photos he had taken of dead bodies. The boy's family thought he was unconcerned and didn't feel compassion, but this was how he handled the concerns he had about his father's life. Obviously, he wanted to get a clear picture of what was happening, possibly to assess the risk of death his father faced; he was not at all trivializing the situation.


I can understand this boy's perspective. Last week, I found out that a girl I met in 1997 on a summer teen group tour died in a tragic accident. I only saw her once since the trip, in 2007 when she was passing through NYC, we only occasionally kept in touch, and we weren't close. I did, however, grieve a little. I cried. I lamented about not having gotten to know her better because she seemed like a great person. On the trip, she had helped me at least once with social problems I was having.


I also found myself recreating the accident in my mind. I wondered what her last thoughts where and how quickly she died. I tried to picture exactly how the accident played out. I wondered what her body looked like. I even searched the Internet for information about how the decomposition process works. Why? This is not some perverse fascination with death. It is because I have such a hard time wrapping my head around how someone can be alive and happy one minute and essentially cease to exist the next. A once lively face is now just a piece of a decaying body. A once-thinking, intelligent brain is returning to the earth. It does not know it is dead because if it is not conscious, how can it know it? How does it feel to not be conscious? It doesn't. 


It is here that grieving meets scientific curiosity in trying to give closure. But of course this questioning won't give me closure. I know logically I just have to move on and accept that I'll probably never know the exact details of the accident and the aftermath.


Fortunately, I have enough insight not to talk about such things on my friend's Facebook memorial page or with her close friends. Not all people with Asperger's syndrome, however, know this. You may be shocked, for example, because your son seems to be trivializing his beloved grandpa's death. But it is very likely that this is not the case. It may be his way of seeking closure for a death that he is having a hard time coming to terms with. Talk to him. Try to understand why he is thinking this way. It may seem weird to you, but once you understand you might find yourself getting more insight into how his mind-- or your own-- works. 

28 comments:

  1. I can definitely relate to your story about dealing with death! When my 11-year-old rabbit died, I expected to be completely devastated and cry for days. He had been like a little brother to me. But instead, I was fairly quiet about the whole thing. I avoided people, because it felt like they would upset me more. I started reading the guinness book of world records for hours (it's very comforting for me), and even a bit of the dictionary. And, like you, I did a mini-investigation on the process of decomposition. In retrospect, it would seem like enjoy being morbid, but instead it was my way of grieving. It's all pretty odd...

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  2. I grieve in both traditional and "Aspie" ways. I think if I had been closer to this person it would have taken me longer to do things like look up decomposition online. I have to admit that part of it is a scientific curiosity. But why does it upset people? I guess because they think if you have a scientific curiosity about processes related to death you can't possibly also feel for the person who died and her family. People are just afraid of what they don't understand.

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  3. A very good post and I can tell you that I share your need to know as part of the grieving process. I have to know. It is a compulsion. And it exists alongside the other need to cry and mourn in more traditional ways.

    It is as if I have to know everything in order to demystify it. I am not afraid of death and I am not afraid of macabre subjects. I have often thought that if I had been more mathematically inclined, I would have been able to work quite easily in surgery, forensics or other areas that people find difficult to handle.

    I think a lot of problems people have with death in our society are because we use euphemisms and try to distance ourselves from it in other ways.

    I had my theory tested thoroughly in recent years when I was finally able to deal with a death in a way that I found acceptable, not in accordance with what other people thought was appropriate. I viewed the body, sat with it, saw it for what it was. Saw the absence of life and how what makes the individual special is so totally gone from the body once they are dead. It was somehow comforting and confronting at the same time - almost a religious experience except I am not really a religious person. =)

    I'm rambling a bit .. well, a lot but all I can say is that I have dealt with that particular death a lot better than I have those of previous loved ones.

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  4. Thanks for your comment. I'm glad you liked the post. I'm not sure if you're aware, but there is an entry called "Asperger's and Death Part II" as well. I personally wouldn't want to sit with the body (it would be disturbing for me) but I respect that this helped you. How were you able to get that opportunity?

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  5. Thanks for the tip about the second post. I wasn't aware but will check it out.

    In answer to your question - the death occurred at home. I know viewing a dead loved one is hard for some but it definitely helped me.

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  6. You should check it out. It goes into the whole idea about how death is taboo. If you like it, please comment. What did your family think about your hanging out with the body as a way of coming to terms with the death? Did they accept and respect it?

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  7. My son doesn't want to hear anything about his father, who has been in intensive care for over a month, since he collapsed on the floor one morning. My son is 14, and is using war games on his computer to keep his mind off what is going on in the real world. I haven't seen him reading anything on the internet relating to his father's illness, although he is an avid researcher. This doesn't really sound like Aspie behavior, or does it? I've been pretty much letting him go with it, although I have made him go to the hospital once to see his dad. What do you think about this?

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  8. I honestly don't know. This isn't how I would handle it, but every Aspie is different. Maybe he doesn't want to see/hear about his father because he doesn't want to face what's going on? Is his father going to be okay, or is that up in the air? Anyway, good luck!

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  9. Thank you for your blog post. I was searching on-line about how people with Asperger's deal with death and I stumped across this post. My son has Asperger's and his Grandpa passed away today... it was almost like your blog knew someone was going to be looking for this info. Thank you.

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  10. Thanks for your comment, and I'm sorry to hear about your son's grandpa. Was he behaving in ways that I described in the post? I wish you all the best.

    Julie

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  11. My husband died 3 months ago after a 3 year battle with blood cancer. During those years he meticulously recorded his blood counts on a graph and generally speaking his whole concentration was on his illness and treatment. He was unable to articulate how he was feeling or what his symptoms were when asked by medical staff and would respond with "How SHOULD I be feeling?" He didn't want any support or help from me and I can't begin to describe how painful that was. He died at home with the assistance of community nurses and myself of course but, except for one occasion when I broke down and he put his arms around me and allowed me to cry, there was no sign of sadness that we would be parted, or that I would have to exist on my own. During our 34 yr marriage I could never fathom his behaviour and thought he was just being cruel and difficult. He did know when he pushed things too far and I would be given flowers and a mumbled apology. He was anti-social and only relaxed when he was in total control of things at home. I grieved for him often as it seemed to me that he was a deeply depressed and unhappy man yet I couldn't do anything to help him. He said many times that he felt that he just "didn't fit in". After he died I stumbled on a podcast of Tony Atwood speaking about AS and couldn't believe my ears. So much of what he described fitted my husband. All too late. If I had known, life for me at least would have been much better as I would have realised that he couldn't help the way he was. I feel deeply sorry for anybody who has this condition, especially if undiagnosed, as it must be hell to have to try to function in normal society. I also feel sorrow for those who are connected to them, wives and children. I loved my husband but despaired for him. I contemplated leaving him a number of times for my own well-being but didn't because I knew he needed me. His children from a previous marriage could never get close to him but wanted to. He never forgot their birthdays, or their children's but handled it more as a duty than as a loving parent or grandfather and I was always wined and dined for my special day, but... All so very sad. Maybe there should be an Aspergers' community like some of the religious ones (J.W's or Quakers) so that they are all "reading from the same book" and understand each other.
    Sorry for the lengthy dialogue but when I found this site and thought about my husband dying, I had to communicate my feelings.

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    1. Hi i just wanted say that your husband must have been really lucky to have someone like you in his life and loved him for who he was.

      i myself am inflicted with aspergers syndrome
      and my quirky habits and social awkwardness have blown my relationships with women in the past but from what i read it has given me hope that like your husband there is someone out there for me.

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  12. Thank you for your comment. I wouldn't agree that you should feel sorry for people who have the condition. It can be a great gift. What is sorrowful is the people who don't accept differences.

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  13. My mom's best friend lost her husband today. I have aspergers... I almost cried for a minute and was very angry and sad, but that only lasted a half hour. now I feel like normal, but the fact that he died is still just hanging there. PArt of me wants to grieve properly and part of me wants to just focus all my attention on my finals for the next week and grieve later. . . . . .

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  14. I have a 21 year old granddaughter who lost her mother a year ago, I thought she might like a picture of her and had a nice picture enlarged and put it in a nice frame and gave it to her, she threw it away. She says she doesn't like pictures. She never mentions her mother or that she is sad. I want to understand but I didn't know what to say when she threw the picture away so said nothing. Any suggestions?

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    1. Thank you for your comment. Every case of AS is different. I am not sure why someone would react that way. Maybe she prefers to deal with it internally like some NTs-- usually men-- do, but to an extreme. Perhaps ask your granddaughter if she wants to talk about it. I'm guessing she doesn't, and in that case it might be a good idea to ask her to write down her feelings. You could have a discussion via notes you leave around the house. Maybe a face to face talk is just too overwhelming. Ask her, too, if she would rather talk to a therapist. Anyway, these are just shots in the dark, honestly. Please let me know what happens!

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  15. I've discovered she really didn't throw the picture away but put it in a box in her room and does not want it up. She refuses to discuss it so we have not asked about it anymore. She does not want to write notes either. She is very resistant to changes and basically would just like to be left alone to be on her computer or watch TV in her room. Since she has come here to live she has taken a bath once a week, eaten at the table with the family for noon meal, learned to wash her clothes, with help cleans her room and the bathroom and goes on an outing once a week with cousin who is her age. She speaks very little to anyone except the cousin. Her aunt calls her once a week and she does talk to her sometimes with more enthusiasm than other times. Her future is to be placed in a housing placement with other females with Aspergers. We do not hope for much improvement beyond where she is now. Her whole childhood and young adulthood was very isolative and pretty much doing what she liked. Here days are her nights and visa versa.

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    1. If she talks to her cousin, perhaps that's who she's talking to about it. There were many things that I would talk to with only certain people, like my cousin for one, and not my parents. I'd say let it lie.

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    2. HI !!
      french people here! be nice with my style of writing, learning your language is not the priority of the "beautiful" learning system of FRANCE !

      in advance sorry for this long post but it is important for me to be precise!
      I'm 32, self-dignose Aspi,a light but weird case! i will test myself sooner, but in France autism is still in the "Moyen Age" (~xv century) and it's difficult too be heard!

      In 2002 my best-friend, my childhood friend died of a fatal stroke attack at 22 years old in a concert of SOAD.
      (no drugs just cardiac malformation)
      I always think of him dieing in a motorbike accident, between his 35e and 40e years ! not a premonition just logical thinking :statistics vs "the way of acting of my buddy"! but i did not see this stat. coming ! notice that this thought must have help for what's next

      i learned his death on the toilet !(respectfully, no joke)
      i heard, past the door, my girlfriend screaming in the living room ,"explosion" of pain after the call! getting all my attention, i heard,the name fall!

      My thought were,not in the exact way,closely!
      ---oh fuck im alone, that it....... fk i think of me first,i love you friend, poor parents ! fk,fk,fk,fk,fk this is a shity situation !!!

      in 10 second i "did" my mourning, no tears, no pain,no anger, no change at all but psychological sadness, acceptance, just life! ok ! nothing to be done so bye my friend!
      - the magic of the toilet: alone,preserve in many ways of people distraction and so i could did this in my ways!
      ?aspi? way?....i have no ideas how i could react at this news in front of people
      - the "shity situation" is just other people will do there mourning and this is a "freak" respond to the dead of bfriend! so for me the most difficult moment in the death of this friend is the very long stupid acting and forced tears to "look" normal ! and it is pathetic that my country have this medical ignorance, I m fking too normal, and so fking not !!
      so 2/3 french knows this story and now some other !

      thank for reading and comment.. whatever


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  16. I believe my step daughter is an Aspie. For the sake of rambling i will list a few reasons why. I also to some extend think her Father is too. Anyways her goes her list:

    -when she came to us she never wanted to play with the other kids
    -does not like physical relations like hugging, will not be first one to say she loves you
    -very literal; one day her teacher asked if she ever thought of suicide and she answered yes. The teacher got upset adn sent her to guidance councellor; she meant she has thought about it; why they do it, how they do it, what it was like etc
    -my Mom passed away; she was cremated, the comment was made, well at least you don't have to woory that she will be eaten by worms.
    -recently a close family friend died and she got all emotional when we were teasing her about something she had said totally not related to her friend's passing and she broke into tears and said we were teasing her about death. She locked herself in her bedroom.
    -her hygiene is OK she takes showers but does not look after her appearance; her hair is always a mess, she is over weight and she could be sitting there and her tshirt could be hikied up over her belly and she just doesn't care
    -she is into drawing dragons
    -she has had 2 interests in her life basically; diving and bow and arrows (which she held my kids in the bathroom with once)
    -she was a bed wetter up until the age of 10 (I think her parents would do things for her all the time as it was just easier) So I don't think this is a symptom.
    -14 years old before she starts highschool she all of a sudden stopped wiping her butt and she would smell. When asked if she wiped her butt she would just shrug. (I have always known she was different as she has given me so many more incidents than my own 2 children)
    -my oldest daughter told me about Aspergers a few years ago. i told my husband to read it which he told me I was crazy. However always told me he wished his daughter was normal like mine.
    -I have recently approached the subject again, and told him that she needs to be recognized as having this condition and her life and ours as would be better.

    My question is should I give her this Attwood book? I try and have patience as I truly believe she is an Aspie however it is really hard sometimes. I need help to help her, does anyone have any suggestions?

    Alone in my own house!

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  17. He has aspergers he is 65 his wife died 11 years ago. He told me he does not want to be a couple or be in a relationship yet we have been connected for over a year. Only last week he invited me to his home for the first time. That was a big step for him because he said he does not entertain in his home because he did not know how to ask politely when to ask someone to leave. I was respectful of that and left when it felt appropriate. He was aware and happy that I did, never having to ask.
    Is there hope for us to every socialize as a couple? He knows how much I adore him. We are both very much on the same page and really enjoy each others company when we get together. Any tips? I tired to walk away and its easy seeing we are not gf bf..but we both continue to contact each other. Should I move on. It's hard to accept that our relationship will only be between the two of us behind closed doors. I don't expect you to have an answer but hope you may shine a little light on the picture of where this may go or not go??? Thank you for reading this. Your thoughts are appreciated. :)

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  18. I see myself in this, tho my partner is not dead yet (terminal cancer, late stages and doctors do not expect him to last the year). I find myself studying, not only to see if there are any treatments that might help that have not been tried/considered but also alot about the process of grieving, especially as an AS.
    But mostly about how to move on after the loss of a life partner and life as a young widow (im 34 and he is 31 and we have been together for almost 15 years, first relationship for both of us) and a lot about what to expect.

    At the same time I keep getting angry at myself for "inapropriate" thoughts, thinking about things as how ill be able to use the parts from his computer to increase the performance of my own after he dies, or worrying if the socialwellfare will make me move to a smaller apartment, somehow it feels like i shouldn't be thinking these things but still i can't seem to stop.

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  19. I have a question. If I killed myself, would it even bother my Aspie husband? Wouldn't he get over it very quickly and move on?

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    1. It's hard to say since there is a lot of variation among ppl with AS.

      I can only speak for myself and loosing my husband 2 months ago (it was expected, terminal cancer) and tho i rarely cry (i almost never cry other than from frustration/anger) it bothers me a lot, a numb emptiness that i just can't shake, a hard time to sleep even with sleepingpills.
      At the same time i have a feeling parts of hasn't accepted/realized he is really gone, that it's really forever.

      On the outside i seem fine, going about the days same as always and everyone keeps telling me how strong I am and how well im dealing, but on the inside im a mess i just can't seem to find any way to express it.

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    2. Yes it would bother him. I have AS and my former lover just committed suicide 2 weeks ago. The first week I was logical and rational but this week I am a hot mess. I cry every day and some times all day. He may not show it on the outside to others but he would be a mess. He would go on and take care of things but that is what is expected and what people do. OH and he would probably blame himself for the rest of his life and would miss you and grieve your loss the rest of his life. And lets face it since most aspies are socially awkward he very well would spend the rest of his live alone.

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  20. I am an adult female aspie. I am currently struggling with an amazing amount of stress and grief and do not know how to pull out of it this time. I am currently under a lot of stress because I am a graduate student in a psychology program which has required me to move a few states from all of my friends and family. In the last couple of years since moving I have lost a few family members, my grandpa and both uncles that were like dads to me (I was raised by a single mom). This was all stressful enough and I felt bad because I reacted like you described, a day or two of mourning then look at facts and move on. I felt kinda like a Vulcan. Then my pet rabbit (of 9 years) died last August (2013) and I was a mess again but for only a couple of days. AND then the real big one hit, my dog died in February. She was more than my dog, she was my companion whom I had for 14 years and loved like one of my children or a little sister. I was flooded with uncontrollable emotion and was in a foggy daze for at least a month.

    Then in May my husband who I already only see on weekends moved 6 hrs away to work for the summer. I am not sure if other aspies are like me but I find that certain people make me feel safe and secure and he does this for me but now I see him only every few weeks, I live alone, no friends or family near me. I have tried to befriend my cohorts but well you know.

    Anyway as I am trying to adjust to being really alone (without even a pet) for the first time in years I found out 2 weeks ago that my former lover committed suicide. The first week I was very logical, matter of fact about the fact that he had depression and alcohol problems and rationalized the whole thing. But this week his mother contacted me offering to be there for me because she knew how much we loved each other but circumstances prevented us from being together (actually my aspie rationalization knew that it would not work out with his depression & alcohol issues) .... Anyway I cried for two days straight after her message and have still been crying every day and having trouble sleeping. I am 2nd guessing my choice to pursue my education and my husband instead of him. Wondering if I choose the wrong man, or if I choose him then he would have been happy and not killed himself....and basically ruminating on all sort of 'what if' scenarios. When I made my choice I had to put it all in a box so to speak and let him go but I always knew he was there. I always felt happier knowing that he was living his life and was happy. And it was always a great feeling knowing that there was at least one person in the world beside parents that loved me unconditionally.

    I am having a hard time letting him go again and not blaming myself. I need to move on but I feel so empty and alone and I can't even talk to my husband about it because how do you explain such grief over another man?

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  21. Glorious brains! Your husband may not express it at all but he certainly feels even more than a normal person.
    From my experience, feelings are expressed in my head in various images but don't come out very often. When I'm angry at someone, instead of telling them straight away and move on, I'll make multiple scenarios in my head involving the feeling over few days and sometimes few weeks. I guess it's my way to research the "correct" way to feel or to express it but I'm not sure. Sometimes I go deeper in the scenario that I have running in my head since few years now and I try to interpret that even in that particular context to make sense. It takes again a lot of time until I feel like the story make "sense" and move on...
    I lost one of my best friends last october, I've run the incident a thousand time and tried to imagine what he thought and felt. I've imagined various ways to bring him back (as crazy it might sounds) with scientific thinking and a lot of details. My own way to cope. It's 3 AM in france, I still think about it, I haven't moved on and probably never will.
    If your husband is a bit like me, he would never move on, especially if you kill yourself. It would be lifetime work to put himself in your last chain of thoughts and make any senses of it. That would for me anyway.

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  22. I realize that this is an old post, but I am hoping people still review it, as I'm not sure where else to turn to help my grieving boyfriend who has Asperger's and a deep depression that often afflicts those with the disorder.
    His brother died about 3 years ago, and he still becomes so overwhelmed with depression that he cannot function. It was just the two of them growing up in an abusive and unhealthy household. His brother was not only his only sibling, but the only person on this earth whom he left understood what he had gone through and where he came from. I myself have not experienced the death of a sibling, nor do I have Asperger's, so he finds it hard to confide in me unless he's completely broken down (which he avoids because of how weak it makes him feel). I am always here and supportive and loving, which he knows, but I think talking about it makes it even more real, so he avoids it whenever he can.
    He also still carries anger in regards do this brother's death, because he feels his parents contributed to the heroin over-dose he died from. Not in the sense that they provided the drugs, but they were not good parents and made both of their children miserable, driving his brother to drug use because nothing else helped him. He's also angry at his brother for leaving... because he left behind a 5 year old girl with a drug addicted mother.
    The girl is now being raised by their parents who did virtually everything wrong when raising him and his brother. He is often overwhelmed with worry about his niece, and his inability to keep her protected. She is the one thing that keeps him moving a lot of the time, but he obsesses over any and everything that can go wrong in true Aspie style.
    We've only recently learned (in the last year or so), that he has Asperger's, so I think the newness of it, and everything else that is going on is just too much for him. He often thinks there was something he could have done to help his brother, and he looks back all the time. He has extreme difficulty believing that things will ever get better. He has no confidence in himself being able to be successful in life, and I think its because he's seen so much go wrong, and knows every little thing that can continue to go wrong.. again, the Asperger's plays a big role in there.
    How do I get him to see the positives of life, how to I open his mind when he is so dogged in his own opinions? I have faith, to where he has a complete inablilty to be faithful because he is just too damn logical.
    He is is own worst enemy, but he is a great person with one of the biggest hearts I've ever seen. I love him so very much, and hate seeing him in so much pain with no clue as to how to help him. Any insight or advise is greatly appreciated.

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