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Dealing with grief as an Autistic Adult

Today June 13th marks 3 years since the unexpected passing of my dad. The day I sat and held his hand for 4 hours and watched him take his last breath.

This year is the first year in 3 I have felt mentally able to cope however, having alexithymia I am struggling to figure out if this is because lately I have had unexpected life trauma to deal with and my brain has switched off from anything that requires too much thought, or it has been 3 years and I have come to terms with his passing and am able to be at peace with it?

Death is the only certainty in life, however as an autistic adult the unpredictability of when someone may die is hard to comprehend. Death is permanent. You can’t change the past or get time back so it makes time so precious. For a long time I struggled to not be angry with my dad. The fact he canceled dinner plans with me, the same day he went to work, then passed 6 days later. I never got a final chat with him, a final hug, a final kiss off him. I never got it because of Covid, because of isolation and because he got ill and his wife never told me how bad it was. Maybe I could have requested to visit him whilst he was more communicative and lucid but I can’t change what I did not know.

As an autistic adult I feel like I grieved differently from the neurotypical way. I did not really go through the five stages of grief like everyone says you do. I feel like on reflection my brain couldn’t comprehend the sudden loss and I didn’t realize he was truly gone until 2 months later. The funeral didn't feel real to me. I felt like maybe that is because I didn’t have much say on anything that happened. Just my speech. 

I wasn’t depressed my dad had died I was sad I couldn’t speak to him and I did not experience bargaining because to me logically that did not make sense. I could not change what was past. I did feel guilt. Guilt for not seeing my dad more or ringing more however, that's on him too. 

On his third year anniversary I have nothing but pride and respect for my dad. My dad went to work because he was a proud man who didn’t want to let his employer down. Work was his life my main memories of my dad are him in shirt, tie and trousers that was his go to. He was a smart man both in appearance and mind. 

When I have struggles I do think of my dad and the advice he may give. That was the hardest thing to come to terms with the fact I had lost someone who truly had my back.

I take great comfort in the fact that when I have a big decision to make or something big happens in my life there are signs he is watching over me. Usually in the form of an Elton John song coming on the radio or Robins appearing on walks. I know my dad is with me and watching over me. I speak to him in my thoughts all the time. I think about him most days but don’t feel guilty if there are days I don’t.

It has brought myself, brother and Auntie who is my dads sister closer. I never met my Auntie Helen before my dad passed and I am always thankful for the new person in my life. Another person looking out for me.

Last year I got married and I know my dad was there watching. I know my dad is proud of me and I know he loved me and I loved him and in this life that matters more than anything to know you were loved. 

My advice to any autistic person who has lost someone suddenly is:

  • Do not google the stages of grief. I found as a neurodiverse person this did not particularly help me and I felt I wasn’t grieving properly.

  • Accept it may take longer to process and accept the loss.

  • Go to therapy. Really do go to therapy; it helps sort your thoughts.

  • Rest, sleep when you are tired

  • Journal or write letters to the person you have lost.

  • Take time away from people to recharge i.e. do not commit to social events

  • Speak to your employer to see if you can have additional accommodations such as additional home working or a change in shifts/hours maybe ask if you can come in later if your sleep is affected.

  • Just be kind to yourself. It is OK to not be able to mask or be more exhausted than usual. A massive permanent change in your life has happened and I know myself as an autistic person really struggles to cope with small unexpected changes.


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