AUTISM AND BEREAVEMENT|Purple Ella
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- Опубликовано: 22 авг 2024
- Autism and bereavement. I'm talking about how bereavement might affect autistic people and how best to support them. If you like my videos don't forget to SUBSCRIBE and ring the NOTIFICATION BELL. More below.
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A little bit about me:
Hi I'm Purple Ella and my family is an autism family with three out of five of us on the autistic spectrum. So life can be a challenge but also a lot of fun.
Helpful links
The National Autistic Society - autism.org.uk
As a neurotypical individual I found your video to be quite enlightening into how my friend is currently processing the death of a family member. Thank you!
I was 8 years old when my bio dad passed away and I didn't cry at all at the funeral. I actually smiled at my grandma and aunties because I hadn't seen them in so long and was happy to see them. I went to school days later and didn't even tell my friends. I just learned that my old roommate passed away yesterday and I haven't processed it yet because I don't notice him missing from my life yet. However, when my cat died I was a mess. That was 4 years ago and I feel like it was yesterday and cry about her all the time.. it still hurts. It's all very weird to me.
I was going to ask if it was different when a pet dies, I am always completely devastated when a pet dies, with humans, I am usually more overwhelmed empathising with the others who have lost that person to really be able to process my own grief, it usually comes later
I cannot believe this video is only two weeks old. Guess I have to watch this thoroughly now. My grandpa passed away last night (he has been ill for ages and it was peaceful apparently) and I actually feel worst about my dad grieving. I was not too close to my grandpa but my dad was, obviously. Too much empathy isn't good right now. Just sad so much sad.
Sending love to you at this difficult time x
Thank you for talking about this. My father died during my GCSEs. I have never cried or been aware of feeling sad about this; in the year following though, I kept accidentally getting sectioned to CAMHS wards as a result of a menagerie of surprising and very destructive MH symptoms. At his funeral, I treated it like a party, people must have thought this was strange and I made a lot of morbid jokes. It was all very erratic really + exam stress, I feel so embarrassed by teen me, I'm trying to forgive myself. I'm still on the waiting list for my ASD assessment
When my Dad died our whole family used gallows humour.
How did you get on?
I'm a very spiritual person and as soon as I saw this message I picked up on a vibe a voice in my mind needs to tell you, I don't want to make you cry I don't want to upset anyone, I just I'm like an antenna for the passed over,,, people who are not physically here anymore, I speak to my family members I've lost and my pets I see and hears them and they're passdd away,. Anyway..... I have a message for you, he loves you so so much he is the one who kisses to forehead before you go to sleep and he loves you and never give up on hope bcoz that's what lives inside of us when there seems to be no light at the end, remember that he's always there even if you can't see them, they're always there, he's not hurting anymore and he says that you shouldn't hurt and worry bcoz you just look inside and you will find him , and weather you believe in spirit life's, entities ect, or not or just think I'm being a nut job then okay... But it's true I have gifts and I like to share them with others in hope I bring you some peace inside your hearts 💖😘
I am just like that too! X
You probably made this video too long ago to see my comment; but finding it was a gem after what has happened to me.
We were together, celebrating our granddaughter’s first birthday in a restaurant, having a lovely time; and then I had to rush my husband of 43 happy years to hospital when it was time to leave. Three days later he died. The following day, I heard the pastor of our church announce the death as I listened to the service on RUclips,, That was the only time I have cried.
I was inappropriately hyper for the first couple of months which got me through Christmas, the funeral and the memorial service; but since then I have wound right down and can’t get out of bed unless I have to go somewhere; and I haven’t looked after myself very well. I keep wondering when the bubble around me is going to pop and I will start feeling the grief I know I ought to have; but like one of your other commenters, I don’t miss people much when they are not there. Maybe that is the reason I am feeling so little. It makes me feel guilty, not to be crying all the time, as though I am dishonouring his memory and our long marriage.
I am new to the idea of being autistic. I only realised that I am probably on the spectrum a few weeks ago, but will probably not bother getting a diagnosis. However, a couple of online tests have told me that it is probably autism that has made me feel like a misfit all my life. It's a lifeline to me to realise that my emotions will likely not be typical if I am autistic. Thank you so much for tackling this knotty subject.
When my grandad died I felt for my mum and aunts who had lost their father. I didn't like him so it was easier to be the one doing the running around and looking after everyone. When my gran died I felt more for her, but still remembered how she'd been mean to me many times when I was a younger so again I didn't cry a river and was more hurt for my mum and aunts. My mum died in February of this year after a relatively short battle with advanced cancer. What hurt me more than losing her was the fear, loss of dignity and depression she experienced; she was very intelligent, fit and enjoying life to the full before her diagnosis, and wasn't ready to die. Of course I'd rather she was still here, but when she died and the suffering stopped it was the saddest day of my life but also a relief that she was at peace.
I was the executor of mum's will and in charge of making funeral arrangments. I focused on planning everything with military precision to make her service perfect, however I don't know how I'd have coped without my fiancé who supported me through some intense meltdowns and also supported my aunts (who like him better than they like me!). My mum was a guarded yet very sociable person, and I asked guests to wear bright colours to celebrate her life if they felt comfortable with that. I wore some of my mum's beautiful clothes to her funeral, my aunt who she lived with approved of that, but maybe I shouldn't have announced to my close friends from schooldays "I'm dressed up as my mum today!" (fortunately they are used to me being a bit weird and hardly batted an eyelid) and I probably seemed a bit hyper but that was largely down to relief that everything had gone smoothly, we'd done her proud and could now relax. My aunt, who also doesn't deal well with emotions (if she started crying while we talked on the phone she would just hang up), felt the same way.
Like you Ella, I was able to process and reconcile my mum dying at age 82 as having lived a full life and enjoying many good experiences, at least compared with people robbed during midlife or younger. I also deliberatelty used the words death, dying and dead to square it up in my head, although never in front of mum. I need that bluntness to process it. My meltdowns before and after were OTT and frequent, now they're far fewer and much less intense, and I feel guilt that some people may think I don't care, which I do far too much. I'm in tears again writing this, but it helps me a lot. Any time I've had to deal with life crises I have been very fortunate to have great people around me who cared enough to help me through it. I've had to work very hard to maintain those relationships for my instinct is to be sociable but most of the time tend towards solitude. Your video on friendship also resonated with me in a big way. Thank you so much for putting all of this out there.
I am not autistic, I am a psychology student. The video is suuuuuper helpful! please carry on with those videos. I admire you :) You seems to be lovely person. Take care :*
On a related note, funerals are so bizarre. I understand why people want them, but whoa. I had to go non-verbal and shut down for the second one.
A lot of good tips. I also very much needed to see my dead friend, but his parents wanted a closed casket and it made it seem... unrealistic. It was difficult to explain to people. They kept saying - remember him the way he was (he was not disfigured). I sometimes get anxious about my parents - how would I cope without them and their support when they die. Then it helps me to have plans A, B and C of how I would do things.
I hate it everytime my partner is saying "everything will be oké..." Or "he will wait for you on the other side..." No! He's dead and he's not coming back. My heart is broken.
My least favorite is when people say, "they're in a better place now". Like no. The better place is to be here with us in this life. They didn't want to die. They wanted to continue living and being here with us. Where is that better place you speak of and can you prove it exists and is actually better? Ugh. I get some people think that helps but it really doesn't. Saying "I'm really sorry for your loss", or something like that is much better than trying to justify it and make us feel better. It doesn't.
Thank you purple Ella for doing this video, Iv lost a lot of people who have been close to me. I find it really hard to express to people how I feel about it. I find writing poetry helps to get my emotions out.
I was diagnosed as autistic since before I could talk. My folks always told me that if I cant learn to mask my odd behaviours and learn to luve alone thenI'll end up in a group home, when they die. My best friend joe died on mother's day this year and ever since his friend texted me the sad news I've been so despondent over his passing.
Well done and eerily timed. Today is the one year anniversary of my sister's death due to accidental drug overdose. Her birthday was last week. I have been avoiding the whole thing but today I am really affected physically. Lots of hand flapping and I have not even made my bed or started breakfast much less begun to care for my pets. I think I'm going into some depersonalization and derealization in order to avoid the overwhelming emotions and disturbing sensory issues that go along with it. Thanks for sharing. I try not to watch utubes in the morning but I think it helped me sit still and calm down for 15 minutes.
I'm really sorry to hear that, a really difficult time for you so sending love from Purple land.
oh wow that's literally how i reacted when i lost my father. i visited him in hospital when he was in coma just to believe he wouldn't wake up again... i recieved the message that he had falled in coma (he was verx ill) when i was on a school trip in spain and i just went on w/ the activity, while my schoolmates were kinda puzzled bc the way i reacted. wow, thanks for the vid!
I either (from the outside) overreact or underreact when faced with bereavement. Part of this is because I do not miss the people I care about when I am away from them. I love them and I am very happy when I get to see them but when I am away from them I do not miss them. So when people pass away I am often unsure of how I feel because I do not miss people but I do wish they had not passed away. From the outside that sounds kind of cold and mean but I promise it isn’t.
On the other hand though I become very very emotional when animals pass away to the point where people say that I am overreacting even when I may be just as upset as when a human dies.
I am lucky that I have not had anyone very close to me pass away yet though so I don’t know how that will go.
Thank you so much for sharing this, Ella. I’m sorry to hear about your Dad and Nan. I can understand how you feel; I lost a lot of family members and friends at a young age and it was so hard. Reacting to news can be very tricky, and that’s why I avoided funerals until I went to my Nan’s (which I did filmed my experience on this). I knew I wasn’t being mean but I did have a little bit of guilt about them. Luckily, I had support from my family, as they understood. Everyone grieves in different ways but it’s okay because no one should be judgemental about these things. You are brave to film this and I praise you, Ella. 🦋✨
Thank you. My family is neurodivergent and we lost our Dad on my partner's side four months ago very unexpectedly a few days after his grandpa died. It's been pretty awful, but for our 3 year old we did keep it very basic and simply said "Grandpa died, that means his body stopped working. We are going to be sad because we loved him very much and that's okay."
It's still very fresh and we're still coping, but really appreciate this video Ella. Much love to you. ❤
Just re-watching this following my mum's passing 12 days ago. I can relate to the ways you dealt with things so much! Not just right now but things that have happened 20 years pre-diagnosis. I'm more or less on my own dealing with all this. Emotionally I mean. I'm divorced and I can't connect properly with my sister - though I'm doing my best to help with all the practical stuff. I feel like sharing this to all my extended family but I don't want to make it about me. The funeral is in a couple of days and I'm dreading it. I will get through it though and this has brought me some reassurance. Thanks Ella x
Hi Laura, I'm so sorry to hear about your Mum, I'm sending love to you x
My Grandma Penny just died this morning. She was my first best friend. I haven’t been able to handle it. This is a major resource for me now, thank you. Sending to my wife to get support.
I lost a VERY close aunt unexpectedly in 2016. I didnt know I was autistic then. I found it horrendous and as you say mostly I felt utterly confused by the loss and the feelings themselves. I also had regular meltdowns and shutdowns, generally struggled with life. My reaction shocked most people even my parents and my new husband. I hope my next loss is not so hard hitting now that I know I'm autistic.
Thank you for this. I got my diagnosis at 31 and not long after lost my stepdad to suicide. Three days ago I lost my great Dane of 9 years to a tumour that suddenly appeared. I feel sick, exhausted and lost.
Thank you for sharing your story. I have been diagnosed with pervasive developmental disorder (most traits of autism but not all) this week . I can relate to your blunt way of expressing yourself. Often mistaken for crudeness or rudeness. Ie "if they are dead, they are dead" and genuinely not knowing how else to say it.
The big difference with me is that my special interest is personalities, the why and how and when. So I have been reading about different types of personalities and emotions since I was a teenager (I'm 30 now) . A lot of my behaviour is mirrored or learnt . So I would know how to act at a funeral, not because I feel anything but because that is what every one else is doing and that is the expected thing.
When my Dad died I was pregnant and worrying about the impact of grieving and I had also deliberately paused learning whether I was pregnant whilst my Dad was dying because I didn't want to burden him with having to be happy for me, nor to worry. And I was. And both pregnancies I had perinatal depression.
I'm so sorry for your losses, thank you for sharing and being so open. Some really helpful and useful advice, I know what you mean about needing to see someone to have confirmation and closure especially if it has happened suddenly and unexpectedly. I think these tips would also be great for talking to children and helping them understand.
My grandmother passed away recently and I feel like my emotions are a bit all over. When I got the call she was likely not going to last the week, I felt nothing even though my Mom and sister were crying. I felt like I was terrible for it. But then, it was coming out in different ways even though I wasn't aware I was feeling emotions. When she finally did pass, I did cry right away. But then went back to normal the next day to work and classes to the shock of my professors. It's been inconsistent since. Sometimes I'm crying a ton and having random meltdowns with people over insignificant things, but other days I feel nothing but then I'm struggling in other areas like focus, more sensory issues, and freaking out more when I have to do new things, or just leaving my house for errands or church. I ended up not going to her funeral because I couldn't get myself to go to a new state, and the funeral felt too overwhelming. I also couldn't see her before she died and only managed to call her twice because I didn't know what to say, and didn't want to say goodbye. It was just all way too overwhelming to me and didn't know how to really express it. My daughter on the other hand whose also on the spectrum has struggled more like how you describe with cognitively feeling maybe sad, but not being able to actually experience any of the emotions. She has yet to cry but has said several times she thought she should cry but nothing comes out. She hasn't talked about it much and doesn't seem to remember unless she sees me cry then she asks, "you thinking of great-grandma? I miss her too." She has ASD & ADHD and definitely has object permanence challenges too, whereas I don't.
I don’t mean to be rude or getting off topic but, you’re saying you have a daughter. Being autistic/aspie, how did I you meet your partner? Aspies can’t date due to their poor social skills.
@@akawhippy Hi, no worries. Not rude. It is however a misconception that autistic people can't date due to poor social skills. We all have varying degrees of that skill and overall it can be taught to most of us. I wasn't diagnosed till late in life and I learned to mask well enough that I pass for neurotypical easier than some. Always pretty introverted but I had lots of people just sorta adopt me along the way. When I met my husband, we were working together. I was actually his boss so I had a work mask that made me appear a lot more put together than I am. Our relationship ended up being long-distance for a while too which probably hit a lot of my challenges. Eventually, when we got married and I became a Mom much sooner than planned and had health complications creep up, I couldn't keep up with the mask anymore and he got introduced to the full ASD me. It's not easy being in a mixed marriage with an NT, but we make it work. If you're asking for yourself, finding another ND would make your life a lot easier probably.
The guys that liked me before my husband tended to be highly intellectual and they found me mysterious, smart, and interesting, or they were more type A and rigidly controlled types. Like military. They said they liked that I wasn't such a ditsy flirty girl and I was more leveled-headed and mature. So the right person is out there for even us Auties.
Thank you for this my granddad past away about 3 weeks ago we lived with him he supported me a lot through life (I’m 23) he had dementia
I have lost my best friend recently and everything has been really confusing. Thank you for posting this, needed to understand how me having autism comes into my grieving process.
Thank you so much for talking about this!! You're right, there is very little out there on this subject.
These terms have been incredibly confusing. Thank you, this highlights the importance of support during the several processing that takes place.
I really appreciated this video. Thank you so much for sharing. I think this helps me be more aware and more supportive of the people in my life.
Thank you. It helps me understand some important people in my life.
This was a really useful video. Thank you for being brave and talk about such a difficult topic. Woolly language around death is such a challenge. Years ago when I was told that someone had lost a child - I was so concerned about what the police were doing to find it. Maybe if it was an old person who had died I may have understood, but as it was a child it did not occur me that the child had died.
I'm sorry for your loss
I lost my father when I was 39, so about 6 years back. I’m from wales and live in Denmark, my mam said he had had a mini stroke and there was no rush to fly over. A week after that he died. It turn out his stroke was as bad as they can be and my mam, for some reason told me it was very mild. I didn’t cry at the funeral, I did when I saw his body in the morgue and kissed his forehead though. My strongest emotions however are for my mother, the intense anger I feel about how she prevented me from seeing him before he died is crippling at times.
I don't feel anything except shock when people die. I used to think something was wrong with me when I didn't know I was autistic.
Me too!
I'm autistic too
Hi, thank you very much for this video. I'm just coming up on the first anniversary of my mother's death (and similarly, it was a 'complicated' relationship). It helped me recognise what I went through at the time, and what I'm going through now, and I feel more capable and accepting of my thoughts (or lack of them!).
I’m having a hard time
Seeing how this is different than a neurotypical experience. I have autism and don’t have a hard time reading people or noticing my emotions.
I lost my father a year ago and i didn't get grieve as i had to take care of the arrangements. I was also his carer and I'm autistic. I've been told repeatedly that there is no resources for me to help me process the grief. I have flashbacks of his last weeks and i have no idea how to cope or deal with this. My autistic means I'm very disconnected emotions. ^^; I'm known as the family robot.
@5:00 - @8:55
I am self-identifying AspieDHD, and I shared this part with a few close people in my life - one NT, and one I suspect is on the spectrum.
Thanks for this. So sorry for your loss.
My dad just passed on Friday. Initially, I felt some grief, but I've struggled with thinking that I ought to feel MORE than I do. I was 14 when he moved to another state and we didn't have much of a relationship until in the last few years, as I've been in my mid-late 20s. Your story is very helpful and sounds maybe somewhat similar to mine. I'm afraid people will see me as cold and heartless if I'm not an emotional wreck, but I'm simply not. I wasn't at my grandparent's or 19 year old cousin's deaths either, although I loved them. I think if it were my mom or husband I would be much more emotional, but even then, I don't know. I felt like I didn't process my grandma's death (which happened when I was about 10) until years later. As a child, I was more concerned with what I could do to help with the funeral. I felt sad for everyone else. I'm glad to know that the way I process death is okay and doesn't mean I'm a terrible, cold person. I do struggle with what to say and how to act when others expect me to be more emotional.
Thank you.
I found my dad dead in the arm chair while my mother cooked breakfast in the kitchen. She thought he was sleeping. I remember sensing it. I watched his still body for a few minutes while she fried eggs only a few feet away. I thought it weird she didnt notice. He had cancer and we all knew it was coming. I brought it to her attention that he wasnt breathing. I was very calm. She came over and realized i was right and started crying and ran to the neighbors. I hurried back to my room.
I didn't cry till a day or 2 later when my adult sister cried. Then i cried cause i felt so bad for her. I was 11. I wondered if something was wrong with me for not being broken by this. I miss him and wish I'd had a life with him. He is missed but it didn't destroy me. I also made some morbid inappropriate jokes. Maybe to ease the seriousness of it all for my friend. Could you imagine staying at someones house as a kid and their dad dies in the living room arm chair? Good lord.
I just say what I think even if it does upset some people . I think speek the truth . I have just lost my dad and even though he was 96 Iam still going to miss hin like hell .I had thoughts about taking my own life even just to get out of it
Thank you
ELLA, thank you so much for your video. My Nan is terminally ill and I feel forewarned about how my ASD may affect my grieving process xxx
by the way I'm sorry for the loss of your nan and Dad x
Thank you for that video and sharing your experiences. I didn’t lose a person to death. Only pets.I have been hacked a question. How is it with losing friends where losing person that I’m important to you because you go or they go for the friendship break? I have my heart about these things but I can’t find where are those experiences. And I kind of tried to get a hardshell so that nobody can hurt me anymore when he goes away from me.
Thank you again
I get more anxious thinking about having to socially perform at a hypothetical loved one’s funeral than thinking about them dying. Like if my dad dies, I don’t want to have to give a speech, and i feel like my mom might want me to, but i have stage fright. And I don’t want to have to mingle with my parents’ friends even though I’m 40 and know them. When my grandma who I was super close to died when I was 18, my bf at the time who was a jerk said “oh well, she was old, what did you expect? Get over it.” So i repressed any sadness and just partied with him and basically forgot about her (i even forgot that she lived with us for the last few months of her life until my mom reminded me!). I loved my grandma sooo much, but I can hardley remember anything about her even though I saw her all the time growing up. I think that pretending like none of it happened and just moving on like my bf said to with alcohol and partying messed up my brain and my memory with regard to her. I’m so sad I don’t remember her! I was 18 when she died. That’s really old, and I saw her all the time. I should remember her, but when I try to picture her and doing stuff with her, it’s all a blank for the most part. I look at photos and that helps a tiny bit. I have a few small snippets of video but it doesn’t help me remember a lot about hers and my relationship. I know I felt way more loved and safe around her than my mom at least. But i know that more in an intellectual way, rather than because of memories.
Thank you very much for your video. It was very useful.
Yes I relate to you
my family's reaction to our dad dying was so unusual that i'think that we are all on the ASD spectrum..it was a shock to me because i thought we would look after each other but that didn't happen. i have adhd and i definitely feel emotional empathy but it's a rule for me.. i but i think i express myself in a way that seems odd to people, .. my siblings both don't understand why i want to do certain things that remind me of my dad and they have actually prevented me from doing them .. which made me really upset. its a big old mess
On the language topic, when my grandad died a couple months ago my mum told me “I’m at grandad’s house and he’s gone” and I was like “gone where?”. She had to be like “he’s DEAD.”
I kind of just want to know how to deal with being like this, and not NT, and getting over depression and worse..
Grief always induces selective mutism in me. It’s just too much to even talk about so I prefer being mute. Talking seems too hard
My days died in 1989 he wound up the wrong person who eventually killed him. I didn't grieve for him at all. He was a vicious child beater in life and beat on my mum and sister. My mum died last year on my eldest brother's birthday back in 2021 due to cancer I didn't grieve for her as she was a judgemental emotional abuser my mum and dad have been abusers of me since 1974. I can't grieve for people who done that to me and gained delight at giving me epilepsy. Why should I show symptoms of depression over the loss of people who never loved me and just bullied me in the first place. They never loved me because I'm autistic diagnosed in 2003 my mum and dad were hoping I would have been born an NT. Hence my dad's belt and my mum threatening to make me homeless at 13. Sorry no grief.
I have a question about how I can support my significant others, son who is on the spectrum and was living with his biological mother the majority of his life, but who is going to be taken off life support this morning? My concern about his mental, physical, and emotional health are what has prompted me to actively seek out any helpful advice/resources to support him. I too have a son who is also on the spectrum, but my boyfriends son has never experienced a death in the family, or another close individual and his life, whereas, my own son has. I care very much for this young man and he knows that he is welcome in my home to stay as long as necessary, but I don’t want for him to regress, meltdown, burn out, or end up in a health crisis himself, so I am just wanting whatever information or resources that are out there so I can help support him through this difficult time. We are in America and I believe that you are in the UK, but I would really appreciate any assistance you can offer to make this work out in his best interest. Thank you so much.
Thank u
My cousin’s death anniversary is coming up and it just started hitting me. I can’t get used to the fact I’ll never see her again. I don’t know why this had to happen. The person closest to a big sister is dead 😭it’s not as easy as people say. I don’t find this fair
❤❤
Did you cry with both your dad and grandma?
Thank you.