Content is very heavy and emotional. Please take care of yourself if reading.
noun; deep and poignant distress caused by or as if by bereavement
I’ve found that death isn’t something people want to talk about. It’s one of those things that everyone knows exists – but no one acknowledges it.
Over the years, several people I know have died. Great-grandparents and relatives, patients that I was attached to when I used to visit an assisted living center, close friends, favorite professors and staff members, and of course – my baby brother.
When you’re autistic, grief has some specific challenges for us.
For one, my brain tends to hyper focus on things. It also can take longer to process emotions. I feel things so deeply that it’s hard for me to untangle everything, and grief is definitely not a exception. Even though my baby brother died back in September, I still haven’t really worked through it very well. The death of a child seems to make it sting even more. It’s not logical and the whole thing doesn’t make sense.
And then, of course – the change. When someone dies, your routine and situations change unexpectedly and quickly. Considering my track record for handling change… yeah, it’s not easy.
When the death first happens, we might have different ways of reacting. Some of us are in shock, angry, immediately break down, or even look “unbothered.” Considering my emotions don’t always match my facial expressions, that can happen sometimes. For many of us, it’s a delayed reaction. We also may focus on facts, concrete details surrounding the event, data, or even hyperfocus on death or some other aspect involved in the event or the ceremony. I know one autistic person who even broke out in laughter when his father passed away – not because it was funny, but because he couldn’t understand how to process it for a long time. Human emotions aren’t logical sometimes.
The first 48 hours after my brother died, I felt very much like a zombie. I didn’t sleep at all, I barely ate (my friends made me eat), and I was so dissociative that no one would let me be by myself. I went to my Neurodiversity Club meeting later that day, where friends gave me hugs and even flowers. I stayed up all night waiting for my flight to Nashville, and broke down crying in the TSA line because the ticket agent forgot to spell my last name correctly for the bereavement flight (Delta is one of the few airlines that still do that, by the way). I finally fell asleep on the flight out of Atlanta before the plane even went through take-off. I was just so exhausted and overloaded.
And for the rest of the days that followed, I cycled through sudden emotional breakdowns to dissociative fog into complete disinterest in everything around me.
The months after were even worse, and I ended up doing medical withdrawal for the remainder of the Fall semester. I had to move off campus into my own apartment (living alone is not going so well, if we’re being honest), and there’s been so much change that it’s stressful. We may be numb for a while, and the intense emotions can lead to meltdowns, shutdowns, and what people perceive as “regression.”
I’ve been struggling a lot lately with these, but especially shutdowns and seemingly losing the ability to do things that I thought I could do before. It’s gotten harder for me to control sensory input, speak as much (or at all) , and do general executive functioning tasks that I used to be better at. I can’t go to stores at all by myself without crying or forgetting what all to do (guess who cried in the storage department and also left their keys in the door all night?). And don’t get me started on remembering to eat and take medicine right now. I had three marshmallows for breakfast, which is three more than I had for dinner last night.
I’m currently nonspeaking as I type this, if I’m being completely honest. I couldn’t talk to anyone right now even if I really wanted to. To an outsider or professional, they would think my autism was “getting worse,” although I think it’s just the way I’m processing everything right now. My brain and my body are not quite communicating the emotions well, and it’s hard. The constant reminders of him are like a punch to the stomach every time, and my mental health has been worse as well. The depression, PTSD, suicidal thoughts/fixations – it’s been rough. Likewise, it impacts physical health as well. I’ve gone into hypertensive crisis a few times, dealing with a lot of fatigue and chronic pain, and just feeling overall awful.
[I’ve had to take a bit of a break from parent groups, as I started feeling extremely angry at the people saying they wanted to give their kid to the state or that they wished their child were dead. I would give anything to have my baby brother back, who was also autistic. Not to mention that I wish I could have kids, but I don’t think I physically can.
I have some very strong choice words that would probably get me permanently banned from these groups. I try to not use profanity on this page (so far, so good), since I try to make things informative and somewhat “professional” – but I assure you that no swear word will go unsaid if I ever meet one of these people in public. I’ll leave it at that.]
Grief is an overwhelming emotion that impacts people differently, and it’s hard for anyone regardless of neurology. It’s one of those things that most people will experience, but again, no one seems to acknowledge it.
For myself, my autism makes me feel things very intensely and regulating emotions is extremely difficult. And to top it all off, there’s so many unspoken social rules when it comes to grieving – and you can imagine how great I am at those (the answer: not really).
- You’re supposed to cry, but not too much – and not in front of other people.
- You’re supposed to grieve, but only for a short time and when it doesn’t inconvenience other people.
- You’re supposed to not talk about that person – even if it’s what you need to do to process it.
- You’re supposed to eventually “get over it” and it’s supposed to be linear.
- Don’t talk about grief; it makes people uncomfortable.
Quite frankly – sometimes the social rules should be broken. Maybe it’s time to flip the script.
I don’t think grief has a time frame, especially when it was someone you were close to – or when they were young. (When someone dies young, I don’t think you’re just grieving the loss. I think you’re also grieving the loss of future times without them, too.)
I don’t think you can “get over it,” either. Again, grief isn’t linear. These past few months, I keep going from feeling deeply depressed and heartbroken to “I guess I feel okay.” It seems to cycle a little, especially because there’s a lot of unanswered questions right now and the uncertainty is painful.
Right now, I don’t have any useful tips or tricks to cope – or fancy printable resources that I can make and share. In all brutal honesty and transparency, I don’t know how I’m coping and I’m not sure how I’m making it right now. There’s not an inspirational quote out there that will somehow take all the pain away, and no amount of “think happy thoughts!” will mend a heart that’s breaking with grief. It doesn’t work like that. I’ve been contemplating some ideas to help honor my brother’s memory, but I’m not sure yet. Right now, my cat and my fiance are the two things keeping me as emotionally stable as I possibly can.
All I know is that grief is a horrible emotion, and it is incredibly complex – and that it can impact every area of your life, especially when you’re autistic. Go to therapy, take up a hobby that allows you to exert some energy/emotion away from you (needle felting is a personal favorite), talk to people, participate in religious activities, listen to or make music, curl up with your pets, keep talking about your loved ones and keep their memory alive – do what helps you, as long as it doesn’t harm you or anyone else.
Grief is not a linear process, and people will experience it differently.
I did find some resources that other people made, like social stories and advice.
This one is from the UK-based Autistic Society, and it’s intended for autistic people and their families. You can find it here: https://www.autism.org.uk/about/family-life/bereavement.aspx
If you’re having a crisis or struggling with mental health, you can text “Hello” to 741-741 for the Crisis Text Line – something that I’ve used quite a few times the past few months. It’s through text instead of talking, and for the most part, they’ve been very helpful.