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Asperger’s Grief and Discomfort

I don’t know if it my Asperger’s that makes me so uncomfortable around grieving people, or it is responsible for my diligently shutting down emotions to keep distance from my own grief, but I do not that I never know how to help others in this situation.  It is not that I don’t feel empathy, or that I am uncaring, but I may sometimes appear that way. I usually thinking logically—what has to be done? It keeps me busy, and I know that there is nothing I can truly to do help someone who is grieving so I look for something that I CAN do..with my two hands.  I can drive to the store, I can pick up groceries, I can make dinner, I can make phone calls—but I CANNOT make the pain go away, or bring a loved one back. 

My mother is grieving, and the loss of her husband has brought back all the loss of the past few months. Before this was already awakened several times in the night because I was dreaming that I was talking with my father. Then I would wake an and realize that I would never really talk with him again.  Then I feel panic well up, and push the panic, those feelings, (and most all feelings) away…far far away shutting them off.  I never realized before how much I detach from situations in order to not feel the overwhelming emotions that I don’t seem to be able to handle.

This past weekend has been hard. I know that I am over-empathizing with my mother.  I cannot imagine how she feels or what she is going through…not really, but I know that I feel panicked because it could be any of us. I could wake up one morning and have my husband just gone like that…and the thought terrifies me. The idea of everything changing in a heartbeat like that is overwhelming. How life is so fragile and so fleeting….

I have to take my  mother grocery shopping this morning.  She doesn’t’ really want to go, but she must.  There must be food in the house for her to eat. I don’t know what to say or how to comfort her when I get there. I only know that I can get there and physically drive her to the store and help her shop, and hope that for today that is enough.

Jeannie Davide-Rivera

Jeannie is an award-winning author, the Answers.com Autism Category Expert, contributes to Autism Parenting Magazine, and the Thinking Person's Guide to Autism. She lives in New York with her husband and four sons, on the autism spectrum.

12 Comments:

  1. Hi Jeannie. I saw your post on Facebook and wanted to offer my sympathy to you and your family. Even though I am not on the spectrum, the way you cope with others’ grief really rings true for me. Getting on with the doing — the living — seems to be the best way I can cope.

    I wanted to offer an Internet hug to you and a hope that things WILL get better for your family this year. You’ve had too much loss. It’s time for you all to get a break.

  2. Hmm…maybe it’s just the way we are programmed…or not programmed in our case. My Dad died a week before my 16th birthday, very unexpectedly, of a heart attack will in the hospital following angioplasty. I can’t remember what happened last week but I can tell you with crystal clear detail everything about the day he died. I don’t remember much of the funeral home, the church, or the cemetery. I depended on my boyfriend (ex-husband now) and my two younger cousins to keep me busy and away from everyone who wanted to say how sorry they were. I went though a very long angry stage…took years to come out of. People remarked that I didn’t cry much at the funeral. I can tell you I cried enough for 1000 funerals…but mostly in the years since I got over the majority of the anger. I just wasn’t ready to cry. My brain has to almost be ready to feel a certain emotion before I will let myself do it. When stuff happens, I want things to go back to normal so much that I will just pretend everything is ok and march on. I didn’t want their sympathy…I certainly didn’t want all their hugs and tears…those were for my Mom. Tell her you’re sorry. They had no idea what it was like to have the entire world blown apart without warning. I didn’t go home for 3 months, stayed with friends, b/c I didn’t want to see the house. I didn’t sleep for 2 weeks much because I was afraid I’d die too. It was awful. Now my mom is remarried (19 years she waited)…and about to sell my childhood home this summer. I’ve had to go home once so far to get some things…I haven’t gone back since. I cried and cried for hours…to the point of letting my ex-husband actually hug me I was so upset….and I had a knock down drag out fight with my Mom’s husband (I refuse to say Stepfather)…b/c I see it as all his fault. I know it’s petty…but it’s my brain and it just doesn’t work right some days. I’ll get over it…like I always do…with lots of time. But no…I have a very hard time with funerals and weddings even, any social family gathering. So not just you…sorry for all you’ve been through the past few months…hoping the rest of your year is much better!!

    • Thank you Julie, I too am hoping for a better year to come. I know exactly how you feel, I didn’t cry much when my grandfather died over 15 years ago, but do every time I think about it now…like it just happened. Maybe we process much much much slower…and no I cannot allow myself to feel emotions that I am not mentally prepared to handle. I tend to go on like you said, like nothing happened because I need normal so badly.

      I wonder if anyone else had difficulty crying in front of people? I don’t like to be comforted that is for sure, but even now if I feel like I will cry I go into the bathroom, or cry in the shower, but very rarely even in front of my husband. And then if/when I do I try to suck all those emotions back in and wipe my tears real quick and get myself back together. Why do I do that? I couldn’t tell you…

  3. Big hugs to you and for your mother. We are intellectual and logic-based and it is such a helpless feeling when we cannot fix a problem for a loved one who is hurting.

    I recently lost my niece this October and found I have experienced the grieving process differently than my neurotypical family. From my personal experience, I can just say that being present is a big help. Listening is another way to help with the grief. Remembering is yet another. Remembering anniversaries – the one month, two month, etc of the person’s passing and their birthday. Everyone is supportive now, but in six months, people move on and forget about the grief another person is enduring. They no longer want to hear the person’s stories because they don’t want to be “brought down” by the grieving person’s sadness.

    People stop asking about the deceased because they are afraid it will make the grieving person upset. The person grieving feels like everyone has forgotten his/her loved one and that no one wants to hear stories about them. It feels like the deceased is disappearing and it’s heartbreaking. It feels like they have died all over again. Just tell your mom that you are always there to listen and there will never be a time when you won’t want to hear about him. That will mean a lot. When you know an anniversary is coming, call her to let her know. “I know tomorrow is three months. How are you holding up?” It lets her know you have not forgotten and tell her you are there at the same time. I miss my niece every day. I see her every single day around me. I know that the world has moved forward as it should, but for me, it feels like I’m on a Tsunami being dragged further and further away from her memories and her living presence. I read somewhere once that “Grief swallows you whole, but digests you slowly.” It’s the most honest statement about grief I have ever read. <3

    • Hi Sherri,

      I am very sorry for your loss as well…it is so hard. I dread the time when every goes away and she is left alone. I know that is when your family and friends forget about you, or like you said, more often avoid you and the conversation that leads to the loved one.

      Did I mention that he passed on her birthday? Most of our family (including me) found out about his passing when they called to wish her a Happy Birthday. She woke up next to him and he was already gone (passed in his sleep)…I can’t imagine waking up like that.

      I lost my Dad 5 months ago, and it doesn’t feel real. I don’t think that it has “hit” me yet, and I know that I haven’t grieved…this brought feelings I was unprepared for…then in Dec. my brother-in-law passed at 35 years old! Same thing, still haven’t really felt much (maybe still numb) but the third in 5 months I think it just really hit home hard for all of us.

  4. Give her a hug, and take one back for yourself, it is something you CAN do.. and one of the only things that brings comfort. No words needed.

    • Thanks Colene. I am going to give it a serious try today. I feel just horrible for her, and the boys…he was the only grandpa they were really and the only one they had left because we lost my Dad in October.

      My mother is always really “huggy” and I always dread it. I tend to stay a good distance so she doesn’t try to hug me….I know it sounds awful but it is so uncomfortable for me. But today, I am going to try…as you said, I CAN do it even though it makes me cringe. I CAN look beyond my first reactions and feelings and consciously do something different, although, it make be a little awkward.

      It’s weird sometimes how something as seemingly simple as giving a hug can feel like such a huge event, and I am an adult. Can you imagine how the kids feel?

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