How does a person with Asperger’s process death? Do we experience grief the same way that neuro-typical people do? These were my questions as I struggled to understand my personal grief when my niece died last October. In my last blog, Goodbye Small Fry, I talked about the death of my niece Vanessa. I shared the story of her loss so you could see what a profound loss it was. I wanted you to understand that it wasn’t a small loss to me. It was a deep, searing loss. My life is filled with memories of my nieces and my daughters together. I lost a piece of myself when she died.
After her death, I felt like my grief was somehow different than the rest of my family. Like a typical Aspie, I tried to research it. I googled Asperger’s and grief. I found almost nothing pertaining to ADULT grief. There were a few scattered articles on explaining death to your aspie child. I reached out to my Aspie community. Those who had experienced a loss were very supportive, but many of those who did not have a similar experience could not relate. They wanted to, but without any personal experience, it was difficult for them. I did not get upset. I understand all too well how it feels to not be able to ‘be there’ because you cannot understand – no matter how bad you want to.
When I removed “Asperger’s” from my Google search and just searched for grief and death, I saw an immediate pattern. Most of the results talked about Elisabeth Kübler-Ross’s five stages of mourning and grief. According to the web, these stages are universal: experienced by all people everywhere in the world. They can be experienced in any order and with varying levels of intensity. People grieving can go back and forth between stages as they work through them. Acceptance, the final stage, can take years to reach and some people may never reach it. Here are the five stages of grief:
1. Denial
2. Anger
3. Bargaining
4. Depression
5. Acceptance
It is said that one must experience all five of these stages in order to feel more peaceful about the loss they have experienced.
I can only speak from my own experience, but as a person with Asperger’s, I disagree.
As heartbroken as I was, I did not feel I experienced grief the same way as my neurotypical family members did. While my family members struggled with the first four stages of grief, I only struggled with one.
I had no denial. My niece’s sudden aneurysm left her brain dead. Connected to a respirator and different monitors, she appeared to be sleeping. The respirator made her lungs expand and collapse – it gave the impression she was breathing. Even though a piece of my heart wanted to believe that she was still “in there”, my brain knew she was gone. It would not allow my heart to fantasize that some day she might come back to us. She was gone. It was logical. There was no denying it.
I did not experience anger either. I watched as others felt angry at varying things, but I could not feel anger. Angry at what? There was nothing to be angry at. No one would have ever thought “aneurysm” in an otherwise healthy sixteen year old girl. To me, there was nothing/no one to be angry with.
I watched her mother and father bargaining. I listened to the “if only” statements. “If only we had..” “If only she had…” I could not feel the need to bargain because my logical brain understands we CANNOT go back in time. There is no do-over. There is nothing we could have done and there is nothing we can do now that will ever bring her back to us. There are no bargains to be made. All the “What ifs” in the world cannot change where we are now.
Depression, however, hit me like a brick wall. Overwhelming sadness consumed me. I felt immobilized by my sadness. Immobilized and confused. I cried for my niece. For the loss of her. For the loss of all of the things she will never do. For the future she will never have. For the memories she will never make. My heart broke for her.
I felt like every ounce of my energy was poured into processing the depression I was feeling. I am not in any way minimizing my family’s grief, but at times I wished I could feel denial, bargaining, or anger – anything but this crushing depression and sadness. In my head I imagined we were all given a “pitcher” of grief. Where they had four glasses to pour their grief into, I only had the one and I couldn’t stop it from overflowing.
For individuals with Asperger’s, I believe there is another facet of grief that we feel. A facet that maybe only we are capable of feeling – Internal Conflict. Aspies are logic based. In almost all instances in our lives, logic automatically overrides emotion. The brain prevails over the heart almost every time and the heart stays quiet. (I realize the “heart” doesn’t actually control our emotions, but for the rest of this blog, I am going to refer to the part of the brain that controls emotions as the heart.)
As I was trying to process the loss of my niece, I realized that for the first time in my life, my logical brain and my emotional heart were at war with each other. I could not function. Logic failed me here.
My heart wept. It did not try to reason. It just hurt. I felt like there was an elephant sitting on my chest. I couldn’t breathe. I didn’t want to move. Everything was a reminder that she was gone and that fact was too much for my heart to bear.
My brain, on the other hand, argued non-stop:
“You believe she is in Heaven. Why are you sad for her? Isn’t Heaven a better place than here?”
“Would you want people to be sad for you if you were in Heaven?”
“You believe you will go to Heaven some day, so you will see her again. This isn’t goodbye. It’s goodbye for now.”
“If she were on an extended vacation and could not see or talk to you – would be you sad for her? No. You would be excited for her so why are you sad now?”
Of course, my brain was right. All of these things were true, yet I was stuck in this looping cycle between my brain and my heart. Logically there was no reason to be sad. Heaven is better than Earth. Logically it made sense. So why did I hurt so badly?
This loop of brain vs. heart vs. brain vs. heart continued because I could not stop hurting no matter how logically I tried to process it.
It was maddening. For the first time in forever, my heart trumped my brain. I was at a loss. I did not know what to do with myself.
I talked with a counselor who explained. “You aren’t grieving for HER. You are grieving for YOU. For YOUR loss.”
That had never occurred to me. Why hadn’t that occurred to me? It wasn’t the loss of HER future memories I was grieving, but mine. It wasn’t the things SHE would never do, but the things *I* would never do with her. I had spent the days after her death helping and planning and doing for others. These are things I am good at. For some unknown reason, I needed permission to grieve. Permission to think of me during this time. Permission to put logic on the back burner.
I still struggle with grief. I still attempt to understand why I grieve. It isn’t logical, but like I said, the heart trumps the brain on this one. The tears come and there is no amount of thinking that can stop them. I’m not sure if that is the final stage of grief: acceptance. If it isn’t, I’m not sure I will ever find it.
I’m still coping with her loss. The first of every month is the anniversary of her death. I used to feel that it was one month further away from her. Further away from the last time I saw her face. Further away from the last time I heard her laugh. Further.
I don’t think of it that way anymore. That was my heart’s way of thinking.
I still prefer logic. And logic tells me that every month is one month closer to her because even for me, death is inevitable.
If you are struggling with grief and this blog has touched your heart in any way, leave a comment. It’s nice to know there is someone out there. ❤
Pensive Aspie 
Wow, it’s so nice to read my head without the work of writing it. I have processed death differently all my life, people think I’m unaffected because I don’t respond right in the moment, but I swim through mud on the inside, sometimes much longer than other people seem to. Thanks for writing this out, I never thought to research it.
You are welcome. I wondered if other Aspies felt the same. ❤
My daughter is 17 years old.
She is grieving the loss of her cat, her best
friend, in the only way she knows, by not speaking at all.
It has been a little over a week.
We lost our dog 5 weeks ago and now the cat.
Worst thing of ownng animals is they can get sick.
She isn’t comfortable with people so animals are her world,
She has Aspergers.
I wish I could take her pain away.
Hello again, again your honesty has touched me in a way few people do. When my daughter lost her husband I was overwhelmed with her grief, at her mapped out future that had been blown to the wind..they had a future planned, the children they would never have now, it was unbelievably sad and all consuming.
When he was laid there being kept alive by machines, we knew he had gone but our eyes kept saying no he hasn’t,look he’s there just asleep.
I was so focused on my daughter, she was in pieces and I had to try and be strong for both of us and that carried me along for such a long time. She had therapy for PTS which helped her release much of her anger. As she started to recover I started to feel my own grief filtering in. I deal with grief my own way, privately and without comfort from anybody else,that’s my choice and it completely bamboozles my husband, he wants to help me but I have to do it this way. I think it is because I need to be in control of it. A bad side effect of all this is I tend to panic when people are ill these days, I completely overreact in quite an out of control way. I think this is because I like to be in control to some degree and when something terrible happens that is completely out of my control as with my daughters husband, I find it hard to compute that I can’t do anything about it…I am the fixer normally.
I could talk about this for hours but I think I have gone on quite long enough for now!
You are not alone in the way you feel, I think that is just difficult when there are many people in your life who react in one way and you feel different to them, but there are others like you that you will never meet face to face but we are out here! Debby.xx
Debby – Thank you for your thoughtfulness. It is hard when you don’t process things the way everyone else does. On one hand, it is a good thing because it allows us to help the people we love. On the other hand, it’s harder because (at least for me), I felt like I should be feeling something different. Big hugs to you. ❤ Thank you so very much for reading my blog. ❤
Beautifully written. When you have time I encourage you to discover all you can about the amygdala and the impact it has on your brain synapses when afflicted with Autism, PTSD, General Anxiety, Depression, Schizophrenia, and other anxiety related disorders. Love you.
I have known about the 5 stages or components of grief for a long time, but I never really thought thru how I actually deal with it. I guess I just always thought that it was “okay” to bypass denial, bargaining and anger is just go straight to paralyzing depression! Even now I have losses I’m dealing with- the same way you do, by looping from heart to head with my head trying to talk my heart out of hurting so much. I’ve often told people that it’s not so much about “getting over” the loss- it’s about learning how to live with it. If acceptance is the absence of depression perhaps I will never be able to “be there”- and I’m okay with that. Thank you for sharing your experience. Your niece was/is a beautiful girl! Grace and peace ~Wendy xoxo
The first night after my first wife died I spent sleeping on the floor in a friend’s living room. My two daughters slept at my Mother’s house. The death was no great surprise, so bargaining, anger, and so on did not figure in my response. Nor tears, nor even depression. Over the next few years, however, I often had sad dreams of encountering her on the street, lost, wandering, confused. This had been her condition through ten years of marriage. Confused and often frightened in one or other of her five personalities, one of whom was vengefully frightening, to her and me both.
Then came a dream where I met her a final time, again out-of-doors, but confident, working as a journalist, and not recognizing me. I did not push for recognition, but just parted as from a casual acquaintance, thankful for the release.
What a peaceful dream. I hope to be able to find that level of peace some day. Right now, I just miss her. She’s everywhere and nowhere all at the same time. ❤
I hadn’t thought of it like that – but you’re right.
When my grandmother died (unexpectedly), my immediate reaction was “Well, OK. Unexpected, but she was 84, and suddenly was the way she always wanted to go. She would have hated to linger or not to be independent, so she had the death she wanted. And death, being the end, isn’t like being shut up in a black box. She’s not in pain or worried or anything, so there’s no reason for me to make a grand fuss over a perfectly natural event.” No anger, no bargaining, no denial. Instant acceptance.
It was only later that grief hit me, and carried on hitting me, on and off, for months. Which made my annoyed with myself because there is no logical reason to grieve for a person who is dead. They have come to an end, as we all do, and that’s it. They’re gone. Then, yes, I too figured out that I wasn’t grieving for her, per se, but for all the things I’d never said to her, or done for her. The chances missed.
I still miss her, ten years later. I don’t think it will ever quite go away; it’s like a tender patch that hurts when you poke it. But that’s part of being human; if you love someone, then your life is never going to be quite the way it was, after they die. But would you ever want to NOT miss them? To think of them with a sort of “Yeah, whatever,” feeling? You do stop bursting into tears in public, though.
But it did make me rethink my approach to life, and to relationships. If grief is about missed chances, make sure you don’t miss any chances…
Such a lovely comment. I have had so many reach out to me after this blog to say they shared the same/similar experiences. You are right. It is important to make sure we don’t miss any chances. We only get one go-around. ❤
Hey Jen, your experience is very similar to mine, my grandmother, who I was close too died in 2012. As a kid I thought she would live forever, even after my parents and myself would die. She was my role model and I couldn’t imagine life without her. She had several strokes and later fell into a coma before dying. There was no Denial, Anger, Bargaining or Depression. There was nothing. I knew she had been fighting and she wasn’t in pain anymore. I didn’t cry at her funeral, I didn’t think I needed to. Like so many others here, the real depression hit later when I realise I would never see her again. I was torn apart one side being incredibly sad and the other from knowing crying wouldn’t bring her back and being told growing up that crying is feeling sorry for yourself. It took a while but I’m better now.
Both parts of this post touched my heart deeply, and again I can sympathise with not feeling as though you cope with loss the same way as others. When these things happened in my life I was busy helping everyone else cope with their grief and organise that it wasn’t till months later that I fell into deep depression myself, it felt like quicksand, whenever I tried to logically think things over I would just sink deeper
I just read through the five stages and realized something very stark.
When I lost my only brother 3 years back, I was also hit by depression directly. No denial, No anger, No bargain. I found all three of them annoying. I felt like, why can’t they just mourn silently.. But now I understand..
I remember shortly after my father died three-and-something years ago now, I kept on wondering why there was no script (logic) I could follow to put everything that had happened into place and move on. I felt weird for not being able to recognize clearly any of those ‘prescribed’ stages of grief within myself. Having been diagnosed with Asperger’s last fall, things begin to fall into place more and more. Many of the things you write about here I find very relatable, especially the ‘skipping right to depression’ and ‘need permission to grieve’. Quite a relief, really. What I’m still struggling with, and I wonder if you would recognize this or it’s just me, is a hightened sense of alertness after this emergency situation that only very slowly dies down – as if somewhere I didn’t turn that switch off (maybe that’s related to that ‘permission to grieve’ as in ‘permission to let go and not let this rule my life, but take it back into my own hands and move on’). Again, that might just be me. Thanks for this post, I think I will come back to this now and again to prove myself this is Aspie logic and not plain crazy :).
Just read this post after commenting on the first one. My experience is that grief is in large part physical. We have lost a presence in our physical lives and our bodies have a response as well as our minds. Our beliefs cannot move our bodies through the grief more quickly (and can slow it down I think if they cause us to resist the physical experience of the emotion.) My experience was that I had to get my brain to be quiet for a while and just give my body what it needed – crying, rest, comfort. For a long time.
My daughter died 6 years ago today, and here I am at 3:30 in the morning. It was unexpected. I moved through it with the emotional range of a toaster oven. It created many issues with my family, my wife most of all. I felt bad for how I made others feel, because I was not feeling the damn Kubler-Ross pattern. Urged into counseling I was going to learn to deal with my grief, and I found out my grief was very confusing. Also it’s bizzare to others. I don’t cry, but I feel I do on the inside for large picture things, but when it’s closer to me..I’m very immune (I guess is what it’s like). I do care though. I focused on the hospital borne infection she aquired that led to her rapid (over-night) decline from healthy to barely alive. I ran the odds of survival, odds of attaining the infection, primary sources or culprits…all of my grief was centered around my brain having to make sense of, and place blame. The natural order must be kept. With no clear answer I was left frozen in grief. My mind and heart in an endless loop. I cannot repair this internal conflict. Every action, every accident, and certainly every infection has a root cause. None of this is to say I require a person or thing to blame to exact any judgement, but I have to know…it’s how I do anything. It’s very late and I am not making much sense, so my apologies. Thank you for the good read. It helped me on things I am struggling with too. I wish I could keep my heart shut down to be honest.
I was reading this in tears, not for myself but for my son, my mum died 2 and a bit years ago from cancer, after a long fight. My son was very close to his granny(my son is an aspie and 22) I myself suffer with several health problems one of which is fibromyalgia, I get tired, forget things, this frustrates my son. Your description is very apt for how things have been from him, I know how to cope with the ‘normal’ way my son was, but couldn’t work out or help with his grief, partly my health getting worse. Reading what u put upset me so much as it relates to his reactions of mums things, still crying now, but this has given me insight of trying to understand what could be going on, thank you so much for sharing with us x
Thank you for this. My beautiful angel daughter died 16 months ago on October 1st of a sudden cardiac death probably related to undiagnosed long QT syndrome. We still don’t know for sure….all this time later we still have no coroner’s findings. As an aspie Mom, processing the grief has been overwhelming. Your description of being simply immobilized is so true. It helped to read this and know that I’m not alone in the way I’m dealing with her death.
Sherri, I am trying to support my 24-year-old son through the loss of his beloved grandpa, and your blog was one of the few helpful posts I found on line. Thank you–this helps so much. Jim could not stay for showing hours, and I think what you write is the reason–all of his grief was in one overflowing container–not divided among four different cups/
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My father died suddenly yesterday. And, for a short while I sobbed and then I didn’t. Sadness has been building more and more and now I’m just depressed. He was over 90, so it was logical that he should die. But one of my first thoughts was why are we not equipped after all these billions of deaths over millions of years to cope better with what we all know is inevitable? And the less I cried, the more I wondered about me and the grieving process. Trying to understand it, I came across this post and it has helped tremendously.
I’m hurting like hell, but it’s not visible to anyone and just the blank look in my eyes would tell anyone who knows me (very few!), that something is wrong. But one of the most difficult things I’m coming to terms with is that my grieving is different, and I’m trying (like a good little Aspie) to find out why and what I can do about it, and what other things I do instead. Right now, I’m more confused about my own reactions than anything to do with my Dad’s death. He’s gone and it will hurt for years, but there is this disconnect (or something like it) between his death and my reactions.
Perhaps that will change and reveal new aspects in the coming days.
I am so sorry to hear this. I hope today finds you in a better place. ❤
My minor was psych. Neuroscience and psychology, especially combined, are a hobby for me, which I now realize has been my way of trying to understand all of these people around me as I lived 35 years as an undiagnosed Aspie.My reading recently led to saying that most people don’t hit all 4 stages before “acceptance.” That a neurotypical person who had a great weekend with their 80+ year old loved one and then get the call that they’ve simply lost consciousness and see them dye peacefully won’t have anger, because there are no reasons to be mad- a neurotypical friend of mine had that happen. Everyone was at her birthday the weekend before, they had a great time, he was riding his bike and stopped, asked a neighbor to take him to the hospital because he was beginning to feel off and then fainted. Every single relative was at his bedside as he died, having only had a few moment’s discomfort. No one in hysterics over his bedside, because as soon as the last grandchild arrived it was officially the way he wanted to go. She wasn’t angry, because he had a long life and an easy death. So we might be more obvious in how we react, but current studies are saying that never having denial, when age or illness made the death expected especially, never having anger, when the death was something that perhaps was a relief to the person who died, never doing the second-thinking of bargaining because they knew all that could be done was… even a person who doesn’t have deep depression because the death was expected and they have already done some of the grieving…. isn’t atypical even for the neurotypical.
I know that my father and I might not be handling my mother’s dementia as others might. I’m in the stage where my psychologist thinks telling people I have autism as I try to start interacting with people in anything but a scholastic or project oriented group is good, but there is no clear diagnosis that my Aspie brain considers “official”. My father has a lot of traits, though not as severe as mine. My response to my grandmother, who until the last few months was in better shape than her daughter, being referred to hospice isn’t the same as my cousins. In part because managing to maintain a relationship with people I don’t see is so hard- phones are hard for me, and because I have a physical disability and chronic illnesses and care for my mother during the day (paraplegic before the dementia) and I didn’t do “social” things before this year had little to write about… but we also need to remember that there is no “typical” grief even for the neurotypical
Thank you for writing this, PensiveAspie. I am currently going through a lot of what you described here in the wake of my father’s passing (a week ago; heart attack according to the obituary). No denial, no anger, but overwhelming sadness/depression. I did not attend his funeral as I didn’t think I could handle it (which may have been a good thing, for reasons I won’t disclose), but I am still hurting emotionally even though, like you in your case, I know it’s not goodbye forever.
I am not an aspie, my son is though. I googled aspbergers and grief and your blog came up. My husband took his life almost 10 mos. ago so I was trying to understand what my son might be going through. What I found is that I really relate to what you have written. I am diagnosed with bipolar disorder and so was my husband. Maybe that makes a difference, idk. Either way, thank you for being so honest. It has helped me to read this. The tears don’t stop and my brain keeps saying exactly what you have expressed…….it is one day closer to seeing him again, so why do you cry?
I’m sorry about your niece. I have Asperger’s Syndrome as well and operate on a logical basis. There are two types of logic. Absolute logic and evolutionary logic. Evolutionary logic is a subset of absolute logic. It’s logic optimized for the human system in the context of human evolution. Humans are a physically weak species that rely heavily on other humans for survival. For this reason, we generally have an innate desire to keep other humans, particularly those close to us, safe. The more allies we have, the more resources we have, and the more likely we are to survive. For this reason, we also have mirror neurons which causes our perceptions of the emotions of others to be mirrored in us, such to help facilitate empathy which prevents us in acting in anti-social ways, and harming others, and thus ourselves.
I think because of this, the loss of someone close to us trips our own self preservation circuits, and thus causes us to experience discomfort at the reality of the fact that we are mortal beings. The concept is as odds with our innately instinctive drive for self preservation, and the preservation of others.
For these reasons, when we lose someone close to us, we feel pain, and depression. It is indeed as if we have lost part of ourselves.
While emotions have their short comings, they serve as the logic driver of living organisms with nervous systems. It was not until the advent of more complex brains, particularly those with well formed frontal lobes, that living organisms such as ourselves were able to utilize absolute logic, and they do something which absolute logic cannot…..they assign meaning to things.
What is water except electrons and protons, but yet in our minds, it’s water.
Hi, I am looking for some help. My girlfriend has Asperger’s and 2 weeks ago was the 2nd year anniversary of her mother’s passing and I feel like ever since around that time she hasn’t been talking to me really. We have a long distance relationship so our communication is very important, but she hasn’t been sharing anything with me about her day to day life and hasn’t been acting like she has any interest in me lately. I thought maybe I did something wrong! but now I’m wondering if she’s just been dealing with her feelings and grief. I may be way off, but I just don’t know what else to think. I care about her so much, but times like these make me feel like she doesn’t feel the same. Also I was wondering if it’s common for Aspies to be unable to follow through with their promises- not because they don’t want to but maybe because the promise is too ambitious and other things prevent it from happening? any insight would be much appreciated thank you.
I’ve read your article several times now, and it’s been immensely helpful in explaining to my friends just how I struggle with loss. This last week I lost my grandmother who I was extremely close to throughout my childhood and teens and still stayed in touch with after I got married. I loved her deeply though I may not have had the time to share with her like I did when I was younger, I still loved her just as much. This week, as the oldest grandchild, nephew, cousin, and son, I felt the burden of responsibility to keep it together so that they could grieve and so that my grandmother’s service went well. Ever since then, life around me has kept going, but I feel stuck in a wave of depression. I can pull my head above the waves for brief moments and see the world around me, but I’m right back in the waves again moments later. I feel that same pain you discussed, but after all I have experienced in my life, I find it so hard to cry, especially around my friends. I only seem to let it all out in private, quiet moments, which would be fine if I didn’t feel like my friends weren’t so concerned about me. I’m not sure how to talk this out with them, but I think I will share your article in hopes that they might understand. Thank you for writing out your thoughts, without them, I wouldn’t be growing in my relationships with my neurotypical friends 🙂
This was very nice to find. My aunt passed this morning, and although expected, it wasn’t expected so soon after a poor prognosis. Oddly, in my youth, a Star Trek TNG episode explained how we grieve for ourselves and not loss ones, just as funerals are not for those who have passed, but for those who are still present. Maybe it’s too soon, but I find myself oddly and immediately in the last step, acceptance.
I’m an aspie as well. My grandfather died yesterday – And i’m perfectly fine with it. I don’t feel sad or anything. I just want to continue my own life and do what i want to do. My head is saying “People die everyday. No big deal. We live and we die when it’s time.”
I do feel something btw. I feel that i SHOULD feel something because that’s what everyone is doing – I want to understand but how to understand if one doesn’t feel? I do not suffer from dysthymia as can burst into crying when watching a movie og looking at at image.
I also tryed to “research” as i simply don’t understand. I don’t even see why i should visit my grandmother, my dad or any one else – Or even go to the funeral.
I’m here because it’s my Mother in Law’s funeral tomorrow and I don’t understand what I am feeling. She was 96, she wanted to die, as she had lost her sight and most of her hearing. So I’m sort of pleased for her. I’m not a callous person. I liked being with her but she wasn’t the person I used to like, she didn’t have much to say lately and was bad-tempered. So while her daughter is constantly crying, I don’t get why she is like this. Even when my much loved Dad died, who was much younger, I very quickly went from shock to simply being practical about arranging the funeral etc. I feel so detached from what other people seem to feel when a loved one dies.
I’m in my 60s and only recently confirmed an Aspie, although I’d know all my life I was different in some way, It’s a relief to know I am not alone. And yes, I can cry at an advert but struggle to cry because of a death.
I think my major issue today is dealing with being at the funeral tomorrow and trying to act as ‘normal’ folk would expect me to.
How can someone who claims to be logical also believe in the myth called heaven? All religions are completely made up and merely exist to lessen the burden of humans being aware of our own mortality. I am sorry if the religion was forced upon you during your “forming years”. It’s hard to throw of the shackles of childhood indoctrination.
I was not indoctrinated as a child. I was an atheist until I was in my twenties. If you want to comment on the post it itself, feel free. You are free to believe what you believe, but please don’t come to my blog to bash others for their religious beliefs.
Now imagine it when you skip all the steps, straight to the heart v brain war, and the brain doesn’t believe in heaven. Crushed.
Thank you for this!
I feel exactly the same way as the last post. I have never been diagnosed with Aspergers but think that I am an Aspie….always been a little different and always been so happy for it. I find that I am more switched on, more logical, more realistic than most people and in my world that seems so much more “normal” than how the majority of the world react to things or should I say overrreact. My Mum died a month ago and I dont feel sad or grief or any emotions. She suffered from Parkinsons for a few years and I felt happy for her that she could escape the body that was giving her so much grief. She was in her 70s and as written before everyone dies and thats just fine. Im not sure why it has to be such a sad thing…we enjoy eachother while we are all together and then its over and Life goes on. Is there something very wrong with me….I do not see Death as this very tragic thing ???
Thank you very much for sharing your intimate feelings. This blog entry is a generous gift to the world. I’m an intern therapist and I’m working with a grieving client that happens to be an Aspie too. Your candid blog entry has helped me immensely to gain some understanding of my client’s grieving process. Thank you!
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Thank you, thank you thank you.. this means more to me than you will ever know. Last month my nephew died – he had Ohtahara syndrome – thankfully very rare – a degenerative neurological condition that means he would likely not live beyond 6 yo. He was 7 when he passed – his parents having made the decision that should it happen – DNR. I can’t imagine being in their shoes. Having to make that decision for their child. Coupled with that situation – my brother and I had/have a complicated relationship. We were estranged for several years – he cut me out of his and his son’s life about 4 years ago for reasons that are too long, complicated (and on reflection pointless) to go into here. I don’t have many fond feelings for him. He like me has Asperger’s. Having his son made him the man he is today. Before he was drifting, feckless and quite frankly a pain in the arse. So reconciliation is ongoing and patchy. I am reluctant to let him back into my life as I know he will start asking for money again and its difficult to refuse. I am glad though that Charlie has passed he was in a lot of pain – the seizures he had were unbelievable – his whole body would arch back like a bow – and he never met the *normal* milestones a child should meet. I met my brother’s girlfriend’s daughter – 7 years old, wearing a unicorn top and chattering away nine to the dozen and fidgeting in a chair bored with adult conversation – the contrast was jarring. Charlie who couldnt do a single thing for himself, compared to this bouncy youngster… It unfair to compare – he didnt chose to be born this way. He was a brave little man in his own right – undergoing complex surgeries at a very young age to have a feed tube fitted (He had to be fed directly into his stomach), and another to correct his breathing. Recently I saw pictures of Charlie from the years I was excluded from his life, And he was smiling. I missed that. All I had known was a little boy in pain. It was clear that him and his parents had a strong fierce bond. Charlies mum now has another child with a different partner, and a large supportive family. My brother not so much. We will have to pull together cos like as not Charlies loss effects us all.
One thing I have noticed though – when I posted about Charlies death on Facebook.. the outpouring of sympathy. I felt supported. What was absent though was actual people visiting to offer help and support. In the end it was only words. From a safe distance. I have never felt so lonely – even to the point where I wondered whether or not anyone liked me at all really in the finish. Whether or not I am wrong in this I dunno not feeling terribly rational at the mo. It was all ‘you are welcome to visit any time’ Just bloody great how about visiting me where I am cos I dont feel up to going anywhere.’ Oh and nothing came in the post. Only one person actually phoned. And that is someone I have a complicated relationship with. I feel invisible and loathed. Not logical but real enough.
As for grief counselling – autism hampshire took 3 WEEKS to get back to me and told me via EMAIL that there maybe was someone but it would COST MONEY! Fuck it I’m mad. Feel lonely isolated shunned and misunderstood. Those people that I know that arent on facebook are probably wondering why I react in the way I do when I see them – How can they not know!? Then I have to explain and its all the mealy mouthed sorry for your loss bollocks and they go away again awkward.
Time to move to another town I have fucking had enough of Southampton and my false *friends*
This society is so rubbish at dealing with grief – particularly when children die – no one wants to talk about it. *brings THEM down* ha.
*
Thank you for having this space to unload its meant a lot.
You are not alone in grieving though. – I dont know whether you find that thought comforting but I have found understanding and comfort here where I least expected to find it.
Hi Pensive Aspie
Re my comment (The long winded one) Its waiting moderation but I have just realised that on the internet my words could end up anywhere. Can you please not post it thanks
Ziggy,
I will honour your request and not approve your comments. ❤ Sorry about your nephew.
I am deeply in love with a man with Aspergers. He hasn’t accepted the diagnosis yet. His wife of 23 years died in December 2016. He adored her and believed she “took care of him.” He was very devoted to taking care of her but she died of a inherited liver disorder. He was devastated and felt lost and alone. We were old friends who reconnected 3 months later. Thirty years prior we had a romance that was ended due to bad timing for us both. Now both of us were alone and vulnerable and despite knowing it was too soon, fell headlong in love. Most of our relationship was wonderful. We enjoyed the same things, never argued although we both enjoyed a good debate. He shared his grief with me although of course more through stories than feelings. However he kept expressing feelings of guilt BECAUSE he was happy with me. He enjoyed some of my strengths which were opposite of some of hers. three months into our relationship a step grandson he and his wife had raised committed suicide. He never grieved or mourned this at all.the young man had many issues that were hard to deal with but I know my loved still cared deeply for this boy and worried about the unexpressed grief so soon after the loss of his wife. Several other grief complicators arose. He began to be distant with me alternating with very loving periods. Then an issue occurred that caused some adapting of our relationship and schedule. Within a week and a half he went from requesting “more space” to suddenly stating he had an epiphany and realized he didn’t love me at all and would be very happy being alone. He is now living very happily alone and is calmly completely detached from me even the two times we have talked. To me his happiness is very artificial but in keeping with the mask he has always worn with most people. He had never felt the need to wear it with me. I am very concerned that he is experiencing complicated grief and no interest in getting help with that. The only people he might confide in are 2 friends who love him dearly, but don’t go deeply below the surface themselves. While I freely admit to being broken hearted about the change in our relationship, my main concern is that he is still not working through his grief and I am concerned for him. I am a grief expert myself who worked in bereavement through hospice over 15 years. (So why did I get involved with such a recent widower? I may be an expert but I’m still a human who closed her eyes and fell in love.) How much is the Aspergers playing into this and am I right to be concerned that he is locking up his emotions completely?
It sounds as if you are possibly expecting him to deal with grief the way a neurotypical person would and we don’t.
I am not sure what is going on with him because I don’t know him.
Getting into a relationship so soon with him after her death was probably not a good idea. Although he probably appeared to be handling it well to the outside world, internally there was a lot for him to process. As you know, the passing of time is part of what heals us from grief.
My fear is that you were the distraction he needed to get through a difficult time.
Many people with Asperger’s are content being on their own. Normal people have a desire to jump right back into a relationship. A lot of people who are Aspies prefer the Solace of being alone. It’s a time when we don’t have to be “on” for the rest of the world. We don’t have to meet their behavioral expectations of us.
I know when I lost my niece people expected me to respond in a certain way. When I didn’t respond the way they thought I should they assumed I wasn’t heart broken. In reality, I was devastated. Although I can write out my grief in a way that neurotypical people can relate to, I have trouble sometimes expressing it in person in a way that NTs can understand.
This is why relationships with neurotypical people can sometimes be difficult for people with Asperger’s. We don’t react in a way that’s expected and our feelings are often misunderstood.
I don’t think he’s denying his grief. I think he’s dealing with it in the best way possible. By spending time alone he is allowing himself to figure out who he is without his wife. After being a couple for so long your identities get intertwined. After a loss, the best thing anyone can do is take time for themselves before jumping back into a relationship. It’s likely that the second death triggered that for him.
So where do I fit in all of that? Or do I? I know you can’t know, without knowing him ,but I’m trying to put my life back together as well as being concerned for him. Because a month ago he treated me like someone he deeply loved and wanted in his life forever . Now I’m someone he once knew and sort of liked.
I don’t know. Only he knows that. I suggest writing to him with specific questions.
Hi, thank you so much for writing this. I agree that we don’t process loss in the same way as others. I have only felt a crushing depression and sadness since my mother died nearly 3 years ago. My logical brain has always told me that death is a natural part of life and I accept it as such, so I think that’s why I don’t do denial, anger etc. I don’t understand why neurotypicals say they feel those things about death because they make no real logical sense to me. I’ve lost others before (friends, family and pets) and been devastated by sadness, but nothing has prepared me for the loss of my mother. I despair of ever feeling any better, but take every day as it comes. The weight of sadness can come at any time without warning and I have no real interest in anything. Knowing that someone else is feeling and expressing the same is a help, so thanks again. I am sorry for your loss.
❤️
Thank you so much for your story. My friend has two twin boys with autism and their grandpaw passed this week. I was checking web How to handle death with before the service. This was very helpful. Thanks again for your story. Very heart felt for me and my passing friend.
This is Connie again about the man I love who was a recent wodower and the grandson he raised committed suicide, and then the man broke up with me. I had questions and you suggested writing to him with those questions. He is not able to answer them. It is as though the feelings from the time he very tenderly loved me is out of focus for him. He says
he knows he felt he loved me then, but it all went away. He States he supposes he did love me then, but now does not even though he does feel badly that I am hurt. Is this typical? Are the feelings of a person with Asperger’s truly that transient? He still obviously loves and misses his wife although even those feelings seem minimized. Is this the way it works and we NTs are just a temporary part of their life? He can not telle and I need to be able to understand a little.
Perhaps this can help.
http://www.adultaspergerschat.com/2017/10/why-some-aspergers-men-fall-out-of-love.html?m=1
Thank you. It is a good article. It is just that I now feel that it is normal in these situations for me to be thrown out like yesterday’s trash when my usefulness was over. Inñbbbb
the heart has 60% neuronal tissue, there is a reason why your heart aches. you can even die from literal broken heart, i.e. when you produce too much adrenalines until they numb your hearts impulse to beat. the whole body as a hypercomplex takes part in issueing and enduring your feelings. your brain might be the switch with the relays but the feeback comes in from everywhere within you. the thoughts that tried to convince you, there was no reason to grief were maybe trying to protect your heart’s health until you grasped the purpose of your grief and be calmed down by the capability to control it that way.
Hi Pensiveaspie
My husband died two months ago and I am finding it really difficult to cope. We are both diagnosed Aspies with 3 aspie teenagers. They act like their dad never existed, even though they were really close to him when he was alive. Only one gets upset sometimes, because of all the things he still wanted to do with his dad.
I tried to explain to my doctor why sending me to a Counsellor who knows nothing about Aspergers was pointless, they have still refrrred me anyway, I am going to show him your article. I came to the realisation days ago that my upset is selfishly based around me because we had a lot planned that we will never do together and I will miss out and yes I get angry but usually when something happens like my car breaks down or I can’t open a jar, then my anger is that he’s not here to help me. I’m not angry at him, I’m Angry at the situation , if he was here he would just fix it. So my anger is all about my frustration, all about me. I know my husband is dead and not coming back, that’s just the way it is and I can’t change that. I don’t know why people keep telling me he’s still here with me, he’s not, he’s dead.
P.S. I should add that sometimes the heart prevails, then I miss him like crazy and snuggle up in his blanket and take his photo to bed with me 🙃
I lost someone to suicide last month and decided to google asperger’s and grief because it didn’t feel like I was doing grief right. This post helps so much to make me feel like I’m not alone. My counselor (who doesn’t understand autism) has been very helpful still, though I haven’t explained that it felt like the steps other than sadness never happened. It’s still good to be able to talk to someone who understands emotions better than I do, someone I can relate some of my memories to and get to talk through and process them.
So much yes to this. 💗💗💗
Commenting because you asked me to ifni could relate. On so much, yes yes yes.
However, I do find it logical to grieve the missing you will have without her for the rest of your earth side.