Grieving and autism. How losing a loved one is helping me find and express myself. 

Stage 1: Life after death.
After hyper-focusing on Brian’s health for so long I could tell he didn’t have much time left. I noticed a few times in the last month of life that he appeared to be ‘actively dying’ although he would then rally a little before crashing a bit - one step forward, two back type of thing. All this time, neither Brian or any health professional confirmed this. Now I understand the delicate position everyone is in with something as unpredictable as death but Brian had a known life-limiting health condition - he was terminally ill with Kidney disease and had been for 3 years. He was also elderly and frail. And yet, he was still being sent for investigative scans up until the last days of life. What on earth for? This all seemed like a huge waste of time and money from my perspective, not least because it perpetuated the delusion Brian was in around being able to live independently (thus leaving us with no access to palliative care team support). So I’m living in this reality while Brian is in another, the health professionals in whatever realm they were in - not really either of ours I felt. I found that hard to accept as it triggered my trauma of being unheard, unsupported, invisible even and then judged for MY inability to function. This triggered feelings of injustice and fatalism - what’s even the point, this is bullshit, life is crap....
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In this, the first of a three-part exploration into identity building as a late-diagnosed autistic woman, I share what grief has taught me so far about myself and how that manifests in the world.
I walk through the typical ways grief emotions manifest and reflect on how autism impacts my relationship with my emotions.
Grief Emotional Responses Include:
Fatigue - feelings of heaviness, tiredness
Brain fog
Aches
Numbness
Dissociation/ Derealisation
Physical Pain
Appetite changes
Sleep disturbances
Lower immunity
Change in sex drive
I also share some insights I've gained since Brian's passing around a thing called 'anticipatory grief' and how that's been both helpful and a hindrance over the last three years.
Finally, I explore some of the bargaining 'tools' people use when faced with grief and how readily I can access these or find them helpful:
Denial
Not ready or wanting to accept the reality and finality of the situation or see it as it objectively is. (me Boundless acceptance)
Bargaining
Making deals with yourself with an underlying notion that you have or can summon the power to change the outcomes either for yourself or others. This appears to be a common western way of thinking - visualisation, goal orientated behaviour, fake-it-until-you-make-it. These mind tools are not always used to defend us against our emotions but when they are, either consciously or otherwise, they can create a delusional state that’s really unhelpful to our emotional growth and may even put us at physical risk. (Can’t even control myself/ helplessness/ feeling my disability/ difference)
Emotional Insulation.
Blocking it out. Pushing it away. Swallowing it down. Being the family ROCK. (Overwhelmed)
Reaction Formation.
Showing the opposite emotion to what they are feeling. A possible example of this is toxic positivity. Judging of emotions and not wanting to show the ‘bad’ ones for fear they’ll damage our self-concept or how other people see us. (Frustrated that my healthy processing can often be misinterpreted as this)
Displacement.
The ‘Kick the dog’ response where we take our frustrations out on other people, on objects or on life in general. How you see the world has changed. (Don’t tend to do this to others but my negative self-talk can ramp up)
Fantasy.
I expect them to just walk back through the door - it’s a break with reality that may be subtle or could even grow towards psychosis I guess. You think you hear them, signs from them etc. This is fairly common and could logically be thought of as your brain gently letting go of the person. It only becomes problematic if it grows, causes ongoing pain and/or dysfunction. (Not strongly. When it does I tend to find it comforting and fun/ creative rather than emotionally meaningful. More intellectually interesting I guess)
Repression.
Forgetting parts of the past including parts of the person or situation that’s passed. This can manifest as a wholly positive re-framing of the person - seeing them through rose-coloured glasses for example. Or in the case of a lost opportunity or job, forgetting what you liked or wanted from it and only focusing on the bad. (Not at all, I can get very upset and dysregulated and confused when I see other people doing this. It makes me feel uneasy)
Sublimation.
This involves channelling our negative thoughts and behaviours into something socially acceptable. For me, it’s through creating things like videos, art, blog posts, and research notes that I share with my friends and family.
I hope you find this interesting & welcome your comments.