#and a depressingly small amount of information to be everything on the subject

[autisticawesomeness-archive-blog]

Hey, can you explain the difference between autistic grief and neurotypical grief? I tried to look it up, but I didn't get much.

Yeah, you and me both, buddy. The problem is that (to my knowledge) no formal studies have been done on the stubject. It’s an issue that has been largely ignored by the psychology field, for reasons that are beyond me (no, actually, it’s ableism. I know. I just don’t like to acknowledge it).

I’ve found three good articles on the subject:  

Autistic Grief is Not Like Neurotypical Grief by Karla Fisher

Navigating Grief and Loss as an Autistic Adult by Lynne Soraya

When Logic Fails: Aspergers and Grief by Sherri Schultz 

But those are basically it. I can, however, speak from experience.

Last December, my mom was diagnosed with stage four primary liver cancer, caused by hepititis C. It was terminal, and any treatments she might’ve had wouldn’t have focused on curing her, but rather extending her life. In the end, she chose not to attempt any official cure. She died last week, after a short hospitalization. 

The neurotypical grief patterns is governed by the famous Five Stages of Grief, which are:

Denial and Isolation

Anger

Bargaining

Depression

Acceptance

Despite their numbered appearance, they can occur in any order. Every site and book on grief will tell you that every single person on planet Earth experiences this pattern. 

All articles about autistic grief, as well as my personal experience, will tell you that that’s bullshit. 

I’ve seen my mom go through all of these stages, in pretty much that exact order. Anger and Bargaining were the most prominent stages in her. I’ve heard her say things like ‘if only…’ more times than I can count, and I’ve heard her rant and scream at everyone and nothing. But I myself don’t feel like this pattern fits me.

Now, I’m new to this whole ‘grief’ thing, relatively, but I can tell you that Denial and Bargaining definitely aren’t appearing. I see no point in them. As Schultz pointed out in her article, the autistic mind is very logical. I see no point in denying the fact that my mom died when I’ve already paid the funeral expenses, have the decleration of death on my nightstand, and have practically seen her die. 

Anger is another one that I’m having trouble wrapping my head around. Who should I be angry at? Why? It’s not like anyone actively tried to murder my mother. All being angry would do is cause problems for myself and others, as well as hurt people’s feelings. I’m not angry over my mom’s death, though I am slightly pissed at my family’s treatment of her while she was still alive, though that’s an emotion that has always been present. My family’s kind of shit.

I do not feel sad, at least, as far as I can tell. I did a bunch of crying when it happened, but that was over after a couple of hours. Since, I’ve only cried once. I feel more flatlined than actively sad or depressed. I do not know if this counts as Depression. Time will tell.

So yeah, autistics will most likely not experience the five stages of grief. Instead, our reaction to grief seems to be based around three things:

Loss of sensory processing abilities.

Loss of executive function/focus.

A need to gather as much information about the situation as possible.

I definitely recognize the first one - this actually started fairly soon after my mom was diagnosed, but has since intensified immensely. Fisher describes her loss of sensory processing abilities in ways that I generally experience under mild stress: the inability to fit visual information together in ways that make sense, the need to shut off all noise, etc. 

Right now, my personal biggest problem on this front is an increased sensitivity towards food: I’m a picky eater, but usually not overly so - I slide by relatively easy. However, ever since my mom died, I’ve been incapable of ignoring flavours I don’t actually like. And unfortunately for me, that happens to be all vegtables. And basically everything but pizza, bread, cheese, and occassionally some meat. So as you can tell, my diet’s been going wonderfully.

Loss of executive function is actually my biggest problem right now. My routine has never been particularly strict, mainly because strict routines, while technically beneficial to me, stress me out beyond any reasonable measure. 

However, what little routine I’ve had has completely fallen through. I’m typing this at 7:03 AM, after not sleeping in the night. I slept in short bursts from 15:00 to 21:30, unintentionally. I ate breakfast at 13:30, despite having been awake since 10:00, because I couln’t get my ass to the kitchen. I didn’t work through any of the messages I was supposed to, because I couldn’t get myself to turn on my phone. 

I haven’t done any housework besides washing my clothes at all since a week, and I only hung out my clothes to dry yesterday, despite putting them in the washing machine on monday. Simply because I couln’t get myself to open the washing machine, pick out the clothes, and hang them to dry.

Loss of focus accompanies this; though maybe that’s the ADHD. Books are my special interest, but I haven’t been able to focus on reading them since January. It’s just completely impossible, and SO frustrating. 

I didn’t feel the need to research everything about my mom’s condition, and I don’t feel the need to research anything about death. However, this seems to be a very common reaction among autistics. I do feel the need to control every single aspect of the aftermath, though, like figuring out where I’ll live now, how I’m going to pay rent, etc. I think that wanting to know everything about death and related matters is an attempt to regain control, and in that case, I fit into the pattern pretty neatly. But that’s just a theory.

Aside from those three major pillars, other interesting things in the articles were these:

Fisher recommends that people start a project, preferably one that centers around their special interest, to redirect their attention. I think that this would be a very good idea, as it combats executive dysfuntion and allows you to interact with your SpIn.

Exploring new avenues of your special interest can also be helpful.

Actually, Fisher recommends time spent with your special interest in general. I second this, but I do want to warn people that it’s very easy to slide into hyperfocus and/or escapism when doing this. Be careful.

Schultz notes that she experienced internal turmoil, where her logic argued against her heart. She explained that, while she felt intensely sad, her mind argued that she had no reason to, because she believed her niece to be in heaven now, so why bother feeling sad? Though I do not believe in heaven, this type of internal turmoil is very familiar to me.

Annoyance with other people’s emotions in regards to the death is also very common, and this is definitely something I recognize.

There’s an increased chance of shut- and meltdowns, probably because of the loss of processing abilities and the emotional turmoil.

Other than with neurotypicals, Fisher notes that being alone may help autistic people who are grieving. I second this. If I have to spend one more second with sympathetic friends, I’ll scream.

An autistic person’s focus tends to be more on the practical side of things, rather than on the emotional side.

Soraya noted that she had unexpected bouts of emotion, such as feeling angry when there was nothing to be angry over. To my knowledge, this is pretty typical for people with depression, but it’s not something I often see brought up in combination with grief.

Some things that I personally would like to add:

Over the past few months, but especially the past week, I’ve gained more harmful stims. I’ve always had a problem with picking the skin on my forehead, but lately it’s just been a bloody mess. I’ve also always have had the tendency to bite my hand, but my chewies just broke, and that’s also a much more common reaction now. I’ve also had scratching my arms as a stim, but I never had the intention of actually hurting, but lately it’s been getting more violent. Good thing I hate long nails and my stumps can’t actually do any real damage.

My stims in general have changed. I used to have a fair variety of everything, but now, it’s mostly chew stims and tactical stims (such as tangles). 

I do not care for the things my mom left behind. I mean that very literally. I did not care for her corpse, in fact I never went to visit her, or went to her cremation. I have no attatchment to any of her personal things, and seeing her empty bed downstairs is not something I mind or get any negative reactions from. This is something that most neurotypicals don’t understand, so perhaps it’s an autism thing.

I perceive the sympathy that other people give me more as annoying than as genuine help, but I don’t know for sure if that’s an autism thing.

So yeah, that’s what I know now. I hope this helped!