Autism, ADHD & Grief | Coping with Loss, Bereavement
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- Опубліковано 31 тра 2024
- My experiences of grief and bereavement have been impacted by my neurodivergence. I wanted to share those experiences and some of the things you might want to consider if you are or care for someone who is neurodivergent.
I agree with you that saying "I'm sorry for your loss" feels very empty and I don't fully understand why we should say it. I have heard some Jewish people say, "May their memory be a blessing" which I feel is far more meaningful.
So helpful. I was diagnosed a few years ago age 58 (I know! what a mind f**k) looking back so much of what you have said makes sense to me whenI remember my grief experiences. Another aspect of it, for me, is that I greive at least as hard for my lost animals as I did for humans and people in the farm community where I grew up were very disdainful of my grief.
I lost my laptop charger today and have spent about 4 hours having a complete utter sobbing awful autistic meltdown. Yah it's actually dad's suicide 12 years ago, reprocessing due to mum going on holiday, so currently "an orphan" and a lifetime of trauma/ trauma response. Needed this video right now.
This actually prompted me to phone 111 to see if I can get anti anxiety tablets from the GP for the weekend. Waiting for a call back.
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@@fliss9962 you wouldn't believe first two phone calls Dr spoke to me and said yes absolutely we will help you (I was amazed) go to sleep and we will call you to come visit us (in the early hours) and do your obs and give you the prescription. Next phone call I get 3am. Different doctor. No we won't give you anti anxiety. I'm like you do realise changing the plan ive been told is a really not good thing to do. In the end she gave me 3 x 2mg in the agreement that I don't use them and just having them in the house should make me feel better. What the heck kind of placebo affect is that 😂. Gotta go pick them up from pharmacy in a bit. Absolutely no hope. Literally. 💖
My dad just committed suicide about a year ago, you’re not alone ❤
I’ve had this all through my 20s losing my dad, grandparents and then my partner. People told me I was weird to not cry at first but now years after I get upset at things like people bring them up and I cry uncontrollably like a child whose unconsolable. People don’t get it because it’s kind of reversed and learning more about my brain I can see it’s delayed processing and reminders cause delayed reactions and the whole reliving the trauma, reliving the pain, and it’s exhausting. Thanks for sharing this Ella it’s so good to hear we aren’t alone ❤
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I gave my mom a photo of her dead mom in her open casket when I was 7 or 8. I'll be 30 years old and diagnosed Autistic late in life. Learning how I process grief and that there is nothing wrong with me (but maybe some loss/funeral etiquette and different ways to show empathy to others is something I've had to learn) has helped me as an adult. I do grieve but it takes me longer than others. So, I've learned to love and forgive myself and to just know that I will process it but on my own timeline. When I have big reactions to so-called "smaller things" in life, I have learned to slow down and take a step back to allow my nervous system to catch up and recognize that I am probably bursting from many things and maybe a past trauma I didn't get to process until now. And THAT, is okay.
Delayed processing event at Disney World.
When my mother's mother died, I helped my mom, uncle and aunt sort out the funeral, etc. I didn't cry at all. Then a couple days after the funeral, we decided to go to Disney World because it was nearby. In the "happiest place on Earth", I had a complete meltdown and could not stop crying. I look back now and laugh a bit at my delayed processing. I had no idea at the time that I was autistic.
My sympathies to you. I can relate to the experience you had. I could see it being a survivors guilt response in neurotypical people; this person is gone, what am I doing here having fun? But I think it would have been a more primal sensation for me: being in a place that is associated with happy feelings would trigger some vague awareness in me that I was feeling something else.
My mother died 9 years ago, and to be honest, I have never got over it. I get very emotional talking about her.
Thank you for making this video. I lost my dad last month. The struggles and feelings you shared helped me feel less alone in my autistic experience.
I'm so sorry to hear about your dad. I'm wishing you love and peace. ❤️
Just wanna say I was thinking to search for ‘autism grief’ last week, as I knew there had to be some interesting substance to consider, something probably too close to home to see from the inside. And I completely forgot… lo & behold, PurpleElla comes through again. ❤️ thank you for being so thoughtful!
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Can't write much because I miss my dad so much.
"I should be feeling something" is so relatable
I'm the type to feel grief very intensely, except for when my paternal grandmother died. I didn't really know her, because my parents cut ties with her when I was a baby after years of putting up with her toxic behaviour. So when she died, my only emotion was that I was kind of ticked that I hadn't been asked if I wanted to attend the funeral, but at the same time I get why my siblings didn't ask because they'd had relationships with her while I hadn't. And I wouldn't have gone anyway because 1) she was NOT a nice person for reasons that aren't my business to share, and 2) I would have no clue what to do in a Catholic funeral service.
When my maternal grandmother died after a series of medical events, I was devastated, even though I expected it. I had a rocky relationship with her (she favoured my mom's sister's kids; also, my autisticness wasn't exactly welcome), but I still felt grief. It was made worse when my biological aunt (my mom's sister) decided that I wasn't allowed to go to the funeral because they were restricted to 20 people under the covid protocols and it was more important for my grandfather's friend to be there. (And my aunt's boyfriend and best friend. And her son's girlfriend.)
Recently, I had very complicated grief when my uncle's ex-wife, my sorta-kinda aunt by marriage, died. (I say "sorta-kinda" because I'm not actually sure if my uncle, who is a manipulative jerk, actually finalized the divorce. He got "remarried" in a sham wedding in Cuba; we found out later that he hadn't actually divorced my aunt. But anyway.) She'd struggled with mental health and addiction, and I felt bad that I hadn't accepted the friend request from her newer Facebook account (I think she'd gotten locked out of her old one somehow), but I was struggling with indecision about accepting it because seeing recent photos of her broke my heart, so I left the request unanswered and forgot about it. But it really didn't matter, because nobody really knew where she was living.
(this is very long, sorry! 😅)
The part that threw me off the most is that it's tough to find out the EXACT things that will happen at a funeral. When my aunt died we didn't have any pallbearers so the coffin had to be wheeled out on a little trolley. I wasn't expecting that, so it made me laugh and feel awful at the same time.
Thank you so much for bringing up this topic. Although i am indiagnosed, i really, really relate to what you said. For my entire life I thought that I was heartless and cold because of the way that i pocess my grief. When I was told that my grandma died, I didn't feel any strong emotions right away. I just went on with my day. Even on the funeral, a couple days later, I wasn't crying at all, while everyone else were devastated, and I felt weird and thouhgt that I'm an awful person. It took me many month or even a couple of years to fully process that my beloved grandma is gone. Now I often cry when i think of her, and I really miss her.
After watching this video and reading comments I realised that I am not the only one like this, and I am not a heartless person
I’m like you! So much of what you have shared strikes a chord with me, you’ve described how I deal with grief and how I deal with scheduling. Thank you so much for being on the Internet sharing your experience it soothes my isolation to hear.
Hi Ella Thanks so much for all you talk about. What a good subject!
Grief is a difficult subject and what you have said about it being different for us ND folk is so true! (I am dx adhd and autistic) You have helped me with this video - I also masked 150% before we knew I was neurodivergent. I masked with EVERYTHING in my life (I am 56!!) and literally hid all my feelings away but in some scenarios I would copy others!
Like you, I looked after everyone else didn’t cry and spent the time at funerals observing everyone else and wondering why I wasn’t behaving in the same way!
However since I was diagnosed ND my father has died and I was able to let myself feel the grief. (Although I didn’t cry and still haven’t - I think I am frightened to open those floodgates)
I still didn’t know what to say to anyone at his funeral so I just stayed quiet. I am from Northern Ireland and we don’t have the horrendously long wait from death to funeral that we have here in England. The time span is about 3-4 days. Dad died on a Thursday and was buried on Tuesday the next week.
Since my late diagnosis I really don’t understand my emotions and am having psychotherapy to try to help me.
Keep going with all you are doing! You are making such a difference to my life THANKYOU 🇮🇪 ☘️
I thought nobody experienced or processed death like I do! Thank you so much for posting this video. It has helped
Thank you for this. I have never heard someone speak about the etiquette around death before. You really captured it and I think this video will help me in the future with funerals and grief.
Thank you for sharing on such a difficult and sensitive subject. I relate to a lot of what you're saying because I've been similar with my response to people dying. You've taught me it's ok as an autistic person to grieve or respond to grief in a different way. I seem to have got it wrong a few times in the eyes of neurotypicals and now I don't feel as bad about it cos of what you shared. 🙂
Yes I find grief strange. I too have lost many people in my life including both of my parents in the last 18 months. I know I'm grieving but I'm always wondering if I'm doing it 'right'. I was 14 the first time I lost someone very close and I still don't know if I did that 'right'.
Grief is such a weird and personal thing. I have not been diagnosed and came to learn more as I have autistic family and friends. However, a lot of what you said made so much sense to me, and while I don't know if that is related to neurodivergence, or just how I cope with grief; the trauma pleaser, the delayed response, the say what you mean not some euphemism all apply. I know that when the brain is stressed, the limited capacity to process includes favoring truth and direct messages as it is simpler, so it is interesting if the cross-over between ASD and a trauma response also comes in here. Good video, thank you for sharing.
I’m in the process of watching all your videos. Thank you so much for sharing your life on the spectrum, you are making a difference 🩶
4 - 6 weeks to wait for the funeral? Here in Norway it’s usually the following week. You need a really good reason to get the funeral postponed to 2 weeks or more. The announcement of the death and the funeral is in the paper usually 4 days after the passing away.
It’s been 4 months since your last video-just hope you’re ok.
Thank you for taking the time, energy and courage to share this. I resonated with it a lot. ❤
Hi Ella, just wanted to tell you I'll be using your videos in a literature review. I'm a student social worker and it's so frustrating seeing how little official research there is into how grief effects us! I'm doing a literature review and a presentation on autism/neurodivergency and grief. Your wonderful videos will be part of it.
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Really needed to see this video today. Thank you
Thank you Ella! I’ve seen a few videos on this topic, but this is the first one that was genuinely useful and helped me understand my own experiences. With both my parents, I did feel an initial burst of grief, but then I would settle more into the things that needed to be done, which as an only child was considerable. I was aware that grief ebbs and flows, so this seemed normal, though I could tell sometimes that people were taken aback by my not reacting the way they imagined I would. What I did not expect was what you described: disintegrating much later over something of no consequence.
I also have a need to understand how something happened, and while this was less of an issue with my parents, it did arise when a co-workers spouse (who I also worked with) died in an accident. I had to learn what I could from accident reports, then I had to work out how the person could have ended up in the situation. Until I did that, I could not grasp the death.
It’s worth noting that my own relationship to the concept of death played a role in my processing difficulties. My reaction to my parents’ deaths became intertwined with my feelings about my own mortality; I think this is common, but given that my feelings on the subject are pretty different than a lot of people’s, it was very confusing, and very different from what I’ve heard others describe. Looking at it now, I can also see that a lifetime of AuDHD difficulties in connecting with people made feelings of regret regarding my life’s own perceived failings, a common emotion to encounter later in life, especially intense. And because I could never tell what emotions I felt about my parents, I had long suspected that this would make the grief process very fraught, and I was right.
As you spoke about euphemisms, I suddenly realized why the terms used are what they are: “death” is the physical thing that happens, but “lost” and “gone” are the specific effects on the people “left behind.” It makes more sense to me suddenly. Those descriptors are in fact accurate and correct, but they are not describing what I assumed they were.
thank you for this. your videos have been incredibly helpful ❤
I hope you’re doing well
Thank you for this ❤ - I did so much people pleasing when my dad died that it genuinely got in the way of me processing my own emotions. Years later I organized scattering his ashes to feel like I could get some kind of closure but felt like I could never really say goodbye. I felt haunted by him, especially because I was the only one there for him in the end and would have severe nightmares about him 😭 I wrote him a letter after he died and sometimes I read it, this helped 🙏
Thank you for sharing and making me feel more normal re nightmares after grief.
I need this video now! Thank you Ella!
Wow!!! This has been my experience! Then then in my delayed response I had no support.
I hope you have more support the next time you have a need for it. 💜 😢 ✝️
had to go to 3 of them and each one people stared cuz of how i was processing it
I had no idea other people have a different interpretation of a more "colorful" funeral! At my own funeral, I'd like for people to wear something colorful (especially pink, my favorite color) so I would have considered your choice in clothes entirely appropriate for the request... I guess we would have both been wrong😅How were you supposed to figure out colorful actually meant "but not TOO colorful"? That's quite confusing...
I have been wanting to see videos about this topic, I think it helps a lot, thank you for talking about it
Thank you for talking about this. I have ADHD and have also witnessed the death of loved ones, and this really put into perspective what I thought was just my style of grieving. I feel the pain of loss, but I’ve no idea how to process it. It feels like it lingers there, waiting for me to accomplish something with it. People often cry when they grieve, as if that leads to some sort of release, but I struggle to cry. I start, then I just stop and feel a bit empty before my mind wonders to the wellbeing of the others around me. I care very deeply about the people around me, but I struggle to see that I might need the same level of care.
It is difficult sometimes to process our own emotions when we are so aware of the people around us going through grief too. I usually have a hard time letting myself cry, but recently it has been hard to stop. I hope we both, and anyone else who needs to, finds healing and will get through this and come out with a refreshed soul. Pain is something only Jesus can get us through. Trying to be responsible for others emotions. Heavy hearts all around. Lord help us! We have too much on our shoulders.💔Please, lift our burdens, Dear God. Thank you and Amen. ✝️❤️🩹
I appreciate finding your channel so much! Thank you for all the videos and all the hard work behind them. I also was wondering if there is a resource that anyone could point me to for preparing for an assessment? (UK, NHS)
The not saying people have died is a pet peeve of mine (apparently quite a few people in hospice spice system who I have spoken to agree , but then we are all neurodivegent )
Thank you for this Ella - I relate to so much of what you've said and its helpful to hear it articulated so well.
Thanks a lot for this video. I am experiencing delayed reaction now, and I’m so grateful for you confirming what I was suspecting, that this had to do with me being autistic.
This was very useful and I appreciate you making the video. Thank you
Good video.
Thank you. I’m definitely having rollercoaster and non-standard responses to my husband’s death in January. I wasn’t officially diagnosed until September. Thank you for normalising my process.
Wishing you love ❤️
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Exactly delayed processing for sure
I’ve lost my uncle last year a few days after my birthday and I’m autistic aswell and grief and having autism and anxiety is not something that I do well
How do you differentiate between grief/trauma and ADHD?
Where are you Ella? It’s been 4 months. I miss you and hope you are OK
Four to six weeks seems so long for a funeral. In my western state in the USA it is a week or two. But my boyfriend's parents lived in the Eastern USA they had funerals more like in England.
Some of it appears to me to be cutural. In what I think of as mainstream (maybe neurotypical?) social circles, people often seem to rush to have a funeral within a week or so. In the circles I’ve travelled in (which I think may be noticeably neurodivergent), the longer timeframe shows up a lot. Some of it is the nature of the event; if burying the person, moving quickly is more important. I’ve mostly been to memorial services with no casket. Heck, most of what I’ve been to has has no dress expectations, and people are often very casually dressed.
@@jimwilliams3816 In my case it has more to do with location I think. The longer time was actually for neurotypicals who lived in the East.
I went to both neurotypical and neurodivergent funerals that happened more quickly in the Southwest.
That could be. I’m very provincial, and my only experiences are in the northeast, and a pretty small slice of that.
@@jimwilliams3816 Your theory could be correct within one area.
Have you lost anyone recently? I'm not sure I want to watch this without knowing...
I thought I was just being British, you know, stiff upper lip and all that
Exactly
Hi my name is aditi
This is grief in general, not specific to adhd or autism. Grief isn't linear so every person experiences it differently anyway. Maybe it would be helpful to think outside of the box. Not to over identify with it from an autistic perspective. It doesn't do anyone on the spectrum any favours. Not everyone will feel like crying, autistic or not. So please beware of how you are portraying this as an autistic issue. It isn't.
Thank you. I was thinking the whole time, “yeah, that’s grief.” Every response is to be expected. There’s no typical.
Gentle reminder: I'm sure Ella is aware of this.
It's so important not to negate or trivialise the neurodivergent experience. We don't think we're special, but so many of us are already sidelined and excluded from society.
You are right to say that each person's experience is valid, though. ❤️
It sounds like you are repeating all the terminologies that therapists say. And now you over thinking it. Be happy . 😊