Grief & Autism - Navigating Loss Differently

Hi! I'm Orion Kelly and I'm Autistic. On this video I explore the topic of grief and autism. Plus, I share my personal lived experiences as an #actuallyautistic person. #orionkelly #autism #asd #autismsigns #whatautismfeelslike

⏱ Index:
00:00 - Welcome
00:51 - Grief & autism
03:15 - Examples
10:05 - Strategies

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ABOUT ORION:
Orion Kelly is an #ActuallyAutistic vlogger (YouTuber), podcaster, radio host, actor, keynote speaker and Autistic advocate based in Australia. Orion is all about helping you increase your understanding, acceptance and appreciation of Autistic people.

#AutisticVoices #ActuallyAutistic #Autistic #Autism #OrionKelly #ThatAutisticGuy #ASD

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⛔️*Disclaimer: The videos contained on this channel are for general education and entertainment purposes only and do not constitute professional advice. For professional advice and training seek assistance from a qualified provider. All views are my own and do not represent those of my employers or sponsors. Some images used are stock images.*⛔️

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[JamieJenkins]

Here's how I handled grief when my mom died in October, I screamed just like Simba did when Mufasa fell into the ravine, then I sobbed uncontrollably for days, I cried so hard on the way home from the hospital that I threw up in the car. I cried so much that my sinuses hurt. Then the day of the funeral I was all cried out, instead I kind of "acted out" in a slightly passive-aggressive way. I just sat with my mouth open drooling all over myself (I wear a raincoat all the time so I stayed dry but I felt bad for my raincoat). Unfortunately all I did was reinforce a few ignorant stereotypes some distant relatives had about autism, I was even referred to as the "special needs daughter" (despite the fact that I'm pursuing a four-year engineering degree). Then I spent a few days just in total numbness and shock. Then about two days after Halloween, I had a panic attack and thought I was going to die. I learned that with strong enough grief, it's not just sad but it's also scary. Then I just kind of went into the human version of Windows Safe Mode, I didn't know how to call it. Too sad to cry, too heartbroken to grieve, too in shock to mourn. I didn't have words. I went from an overly friendly outgoing to the extreme young woman to a sullen, withdrawn shell of her former self that occasionally snarked at people (and quickly apologized profusely but still). I just wasn't Jamie anymore. Thanksgiving rolled around, I was kind of able to go through the motions. Most of the family fought during Thanksgiving, stress taken out on each other. I kind of kept to myself. Well, me and my best friend (who is also technically my niece but she's around my age so we grew up together as friends and not an aunt/niece relationship). We kind of kept to ourselves and ignored the adults. Eventually she had enough and tearfully told them off, I hugged her and thanked her for saying what I was secretly feeling. Christmas was much better. We all got along much better, but the grief came back. My best friend told me her boyfriend (who lost his mother three years prior) said that grief hits hardest on the holidays, it was so true. I cried so much over Christmas. When I was a kid and cried, my older siblings would tease me with the song "Jamie's Crying" but this time they didn't because they knew I had a legitimate reason to cry and cry. I was so sad I could swear my raincoat was crying, too (but it was probably just tears falling onto it). The 26th and 27th of every month are awful for me.

I wonder if a massive age gap with my siblings also factored into how it was different. My oldest sister Sally was born in 1976, Jen was born in 1982, Sarah was born in 1985, and then along came Jamie (me) born in 2001. In fact, little Sally (my niece/best friend) was born in 2006 (she's also Sarah's oldest kid), little Sally also has ASD and is the only one who "gets" me.

[isabellefaguy]

Processing delay is really a thing. I usually start processing the person's death when other people are quite done with their grieving. So, during their grieving, they say I'm heart less, cold, devoid of emotions. And when I finally "get" what's happening and need to grieve, they deny that I can be starting grieving because they're done with it (or a very long way in the process).

[bhornannawindeedeigh]

I was with my Dad as he was dying in his death bed. He was beyond the point of speaking, but I knew, somehow, that he was still "keyed in". So in the hours that I was with him alone before I had to return home two states away to my job, I shared some memories with him - highlights of our lives together... moments of me growing up that I knew he'd be happy to hear about; things that he'd taught me; summers where I'd helped him garden his huge garden of hot green chiles and tomatoes and beans; me giving a speech at graduation; me having a child after graduating from college; me showing him my classroom when he came to visit; all kinds of beautiful things I knew would make him feel he'd raised "a good kid". I hated leaving his side. It was nearing the end of my Thanksgiving break, so I had to get back to work within a two-day drive. As soon as I got back to my city, I received a call from my brother that my Dad had passed. I was heartbroken. So, I took a bereavement leave and turned right back around, drove back for the services and funeral and all of that. But, I didn't allow my siblings to expect me to "view" him. They had always made fun of me being a Highly Sensitive Person and they knew I'd be 10 buckets of tears. So I didn't view him. I sat back far enough away from Dad's casket where i wouldn't be able to see him. He had a sister who was a gossiper who had own opinions about my "behavior". I didn't care what she or anyone else thought. It was important to me that I remembered what my Dad looked like to me from my childhood and into my adulthood... and as I sat at his bedside telling him stories of our lifetime together - with a tear running down his cheek. He was keyed into me. He loved and appreciated me, even as harsh as he may have been sometimes, I know he did the best he knew how to do with what he was given. He was a poor man, and a very proud WW2 vet. God bless my dad. 💐🙏🏽♥️. (Edit - My Dad died 18 years ago. Not a day goes by that I don't miss him - sometimes more intensely than others, but the grief never goes away. Sometimes the grief just makes it harder to get out of bed and mixes in with all the other troubles I experience day to day. The autumn being the harvest of chile season is very difficult. It makes the depression so deep, and the physical pain of fibro way more intense; so the ASD goes wackadoodle.) 😢

[lisaweinmeyer]

My Dad, passed away 38 years ago. One thing that has never left me, is the " viewing" Everyone insisted that I must see my Dad dead, in order to make it real. It was the worst thing I ever did. It didn't help at all. Be sure not to let others convince you, what you should be doing or feeling at a funeral!!!

[CollettePeace]

Thank you Orion! I feel seen and understood. I appreciate your kind and warm delivery

[alanguest]

I'm still grieving for my mother who died 9 years ago. I find it difficult or practically impossible to talk (or even think) about her without sobbing.

[ngrace]

I'm so glad I found this video. I lost my beloved grandmother yesterday, and the advice here is incredibly helpful. Thank you. ❤

[Hopischwopi]

I never thought my pattern of grieving would be another thing that is linked to autism.
Explains a lot again. And I will never get enough of learning about it. Feels so good to finally get to understand myself on a deeper level.

Edit: Oh yeah and I never understood funerals on a personal level. I know people use it as a last Goodbye but for me it would just burn those images and feelings into my mind and I would forever remember the funeral instead of the living person. I hate funerals, I don't go, I can't deal with that.

[nvdawahyaify]

When have lost loved ones, neurotypical people think im heartless because I have blunted affect, and my voice doesn't convey emotions. After losing my loved ones, everyone else wants to just do nothing, but thing still need to get done and I am the one who gets the things done.
Example: recently one of my dogs had 12 puppies. Four didn't make it. Instead of not doing anything I took the bodies outside, dug a big hole and laid them to rest. Came back in the house washed my hands and listened to music.
Before anyone says what others have said to me, I have reacted in a similar manner way when I lost my mother, my son and my other dogs.
And I do care about them. I love my dogs as if they are my children.
I actually love my dogs more than I love humans in general.
I don't start the process of dealing with the feelings until the practical things that need doing are finished and I can be by myself. And the process can last for years. I'm still grieving when people are done, but I can't express myself very well in words, or in tone of voice.

[AutisticAthena]

Grief is hard. It feels like I swallowed sn ocean when my daughter died.
*I also have minimal social support because I'm a difficult person to love.

[justachillindood]

Im so sorry for people in the comments that have had loss in their life

[Tmhjr_Baskar]

I feel nothing when a family member dies. Literally, nothing.

A pet dies and it wracks me into a puddle of mush for weeks on end.

Once had an ekectric saw my grandfather and I built together 35 years ago. Loved that thing because my grandfather was the only person in my whole family that seemed like he got me.

In 2000 he gave me that lil electric saw, but said he'd keep it in the garage for me to use as I like.

2011 he dies...again, I felt nothing
He left me two things. One is a violin and the other is that saw.

Parents knew better than to get rid or sell the violin.

They knew my grandfather and I built that saw and I had used it quite a bit growing

Last year they got rid of it without telling me.

It wasn't pretty. I freaked out on them and I cried immensely at the loss of that thing. To this day when I go to my parents place and see that empty spot - I'm in a bad mood. I get home and I cry because I can't let go of the fact that my parents threw out my heart...feel like the memories I personally shared with my grandfather means nothing to them.

[sebastianleonard]

My nan passed away last month this video helped me with the grieving process of it I'm autistic so ur video helped me thanks Orion Kelly

[Thomas-pqys]

I was a kid in the late 50's, and a teen in the 60's, back when ADHD, Autism, was not on the social radar.

I did very well on intelligence tests, but poorly in school. I was labeled an "underachier, " my parents were told I was lazy... and that's who I was percieved as as a kid. I was very angry, but I'd get beat for expressing it.... I stored it up all my life.

My sister was the golden child. She was obedient, got good grades, was popular in school, was in the church and the high school choirs, and the high school band.... the parent's pride and joy.

I hated school. I couldn't wait to get home, tinker in my father's workshop, build things.

My intelligence, and inate skills, unrecognized by school, got me through life.

I took on guitar, and a very unorthodox genre, and excelled at it quickly. The parents didn't like it. They wanted me to play their favorite tunes, i.e. I was a failure as a guitarist jn spite of me practicing for 6 to 12 hours per day.

Years passed, I was recognized at a job I had as a skilled writer, through pure happenstance. Overnight, I was a nationally published author.

It meant nothing to my family. I secured a highly attractive and genuinly nice girlfriend... nothing.

I was riding 200 to 300 miles of bicycle per week... meh, "that doesn't make you money" is what I heard.

I formed a band that became a local sensation, and I played bass in another band. Both bands played a very large festival, attended by tens of thousands. "I don't like your music" was the only response.

Shortly after, my father passed, my mother got Alzheimers. It was just me and my classically successful sister, who took over all responsibilities, shoved me asside, never asking me to help.

In the passed 10 years, my sister acquired Parkinson's. She's now disabled, can barely feed herself, is permanently bedridden, and rapidly becoming prematurely senile.

She has two best friends seeing to her needs. Through these women, I saw a duplicate of my sister. All are teachers, stoic, as warm as a block of ice in the Arctic.

When I went to assist the friend my sister gave power of attorney to, to help prepare my sister's estate for sale, I saw, theough these friends, who my sister was all along.

At one time, my sister died, was brought back. These women never called me. I found out through a 3rd party who called to relay regards. Why wasn't I informed. "Oh, the revived her, she's ok, so it didn't matter, " I was told by these sister's friends. WTF?

I was at my sister's home, working with a bad back and vertigo, still plugging along the best I can. The next day, I got a text from the friend who wasn't there that was humiliating.

These women don't know me, what I've done or achieved in my life. They only know what my sister told them about me. In this text was guilt trips, and shaming criticism like I got when a child. That I was self-centered, lazy, an imbicile.

I worked my butt off that day... That text was a huge WTF? It was venomous vitriol. I responded that I quit helping them, then and there... I will not be abused from a point of heresay.

Life has been a series of dealing with manipulations and put-downs. 12 years ago I learned to walk away from abusers, not look back, and retain a semblance of self-pride. This was one of those circumstances.

I, and others, had loaded my van with goods from my sister's home. The next day, I drove the 2 hours back, and put it all in the garage, that was open. I want nothing of it. Given these women, they would put a price of "familial obligation" on it all. Take it all. Goodbye.

I realize that if I stayed in touch, I would still be this underachieving, lazy kid to them, and would continue to be abused, chided, imdulged as such.

It was at this point that I declared my sister dead. I want nothing to do with her, her friends, her estate. I told them that whatever was bequeathed to me in the will, to give to the charities my sister wanted. I don't want her posessions, family heirlooms, her money, nothing. Goodbye.

Piss off. No more abuse.

I've been processing the grief, walking a razor's edge between rage and depression.

I had some important counseling in my late 20's, that helped me identify feelings. This really helped in my life.

It is helping me deal with this rage, this hurt, this depression... and I'm healing from this self-imposed grief.

I'm actually feeling empowered for the first time.... doing things I was too scared to do in the past.

I feel free from these imposed bonds of guilt and shame. Get out of my way... I have plans for the first time in a long time. I'm 73...

[saml]

I think it’s also important to understand that grief doesn’t just happen when there’s a death. I had “friends” who when they showed their true colors and we stopped talking the hurt and grief was so intense that years later I’m still trying to process what happened and every now and again I still get infuriated and emotional at the memories and the loss of what I thought was a great friendship.

[WildAngel]

One of the main things I've struggled with in grief situations is how to act around others. My masking scripts are all based on being or seeming reasonably happy and content, but if people know you've experienced a loss recently, they expect you to be sad and upset and I don't know how to act like that or what is appropriate. I deal with this by keeping losses to myself if possible, or staying away from people for a while after a loss, but I can't stay away forever so eventually I just have to muddle through. Goodness knows what people think of me, I probably come over as rather remote and uncaring about it.

[ciaraskeleton]

I had to have my beloved cat put to sleep on the 26th of August.

I have never grieved like this. I lost my dad when i was 16 and im genuinely still trying to process that. But having to be the one to make the final call on your own pet is a whole different level of grief.

I loved that cat more than i loved myself. Or life. Ive never experienced pure love from a cat until i met her. I rescued her and she rescued me. She used to meow to be lifted like a baby, and put her paws around my neck, purring. All she ever did was love me. I loved her so much. I cant believe shes really not here. Shes really not coming back. I won't hear her purring again. I won't hear her meow. I used to feel overwhelmed by how cuddly she was sometimes bc of my sensory issues and now i wish i could go back and never ever let her go. If i knew how little time we had, im sure i could have loved her even more.

I havent been able to sleep, or eat. All i do is cry, do a basic task, then cry again. My heart physically feels heavy and sore.

[musicman]

The smells thing, man... I am not formally diagnosed but am trying to better understand myself and why I feel so different from people around me. I lost my Great grandmother when I was young and she essentially raised me. There are a few smells that if I come across I have an immediate and viscerally strong reaction to. I always was just told I'm weird by my parents and I feel like most of my family never took the time to consider that I do see and experience things through different eyes, that I am what I am and to stop trying to force me into being like everyone else; its not an act or a phase. When I stopped berating myself and actually started asking "why are you different?" instead of "why cant you keep up with and act like everybody?" it started a big change for me. I still don't know for certain I am on the spectrum (though I do tend to agree with and identify strongly with many of Orion's videos among other indicators), the label isn't so important to me as the lesson: I've grown and learned a lot more about myself when I took the time to be curious and accepting of myself rather than accusatory or judgmental. It is just reassuring to know that whether I am autistic or not, there are other people that experience and react to the world in a way I can relate to and understand.

[thekajalflaneur]

Grief is not a linear process. Yeah man true. It is like waves, feels like drowing in a sea of darkness. The agony of it. Like your bones being crushed or your heart feels like it could explode. I turned to music and poetry, and I am finally turning that sea of darkness into an ocean of light. Thankyou for posting.

[nafisakiani]

I grieve and cry in quiet in a private space not around people as that’s when the tears come. I pray for the deceased when others are crying as it brings peace to the departed soul. Mourning with lots of crying can upset the deceased soul