Grieving with autism.

This week, the 26th March to the 2nd April, is Autism Awareness Week. Norah’s Dad is taking over this week to open the door on his world, and to share some of his experiences, with a little help as ever from me.


I have always known I was slightly different to my peers, but I have always managed to muddle through life, albeit with lots of anxiety and challenges. I hadn’t ever considered that there was a name for my difficulties until my wife asked if I had ever thought that I may be autistic. The research we did together made a lot of sense, and we agreed that I was probably on the autism spectrum. Having a label for my problems was helpful, we made lots of adaptions in our life that helped me thrive and reduce the anxiety I felt on a daily basis.

When we first started planning our family, we made the decision together to formalise my diagnosis. I didn’t feel a need to be ‘diagnosed’ before now, but knowing what I do now, I think a diagnosis would have helped me earlier on in my life. Once I knew I was going to have a baby, I wanted to make sure my child would be supported if they had the same problems that I did. So I visited my GP with a list of my reasons for believing I was autistic, and received a referral to a psychiatrist.

My appointment for my diagnostic assessment didn’t arrive until after Norah was born. Three months after Norah died I had my assessment appointment and was given a report to confirm that I have Asperger’s syndrome, an autistic spectrum disorder. The timing of the report could not have been worse, however there were lots of moments during our time on intensive care, as Norah was dying and in my grief, that may have been helped with directed support. Without the diagnostic report and knowledge of my condition however, I was unable to access anything helpful.

There are a few things that I know now that would have been very helpful in the early days of grief.

I need very clear and concise information.  

Phrases like ‘Norah is very poorly’ were very confusing to me. Poorly people don’t die. Healthy people don’t die. I didn’t understand which category Norah fell in. Hope is intangible, as are sentences like ‘prepare for the worst’, as they don’t explain anything; what ‘the worst’ is or how to prepare for it. Equally, long medical explanations without conclusion were just as confusing to me. Quick bedside conversations left me without time to process my understanding, or space to ask questions. I would have understood better if I was told Norah was in a coma, Norah was likely to die, Norah would not get better. Direct communication may come across as harsh to other people, but it is the only way I understand verbal communication.

I will shut down when I am overwhelmed.

Hospitals are very loud, bright, and overwhelming. The smells, sounds and sights felt like an assault to me. When I am overwhelmed on a sensory level, I am unable to understand and process my space, thoughts and feelings. When I am overwhelmed on an emotional level, I experience a full body shut down. When I am shut down, my verbal communication reduces to nothing, I am unable to talk or move. I am not being ignorant; I am in a state of physical shut down. My brain is so busy I have no capacity for anything else.

I can’t grieve through imitation.

I have muddled through lots of my life through imitation. I copy other people’s reactions and what looks like emotions when I am not able to understand or express how I am feeling. I cried when my family cried, I expressed anger when they did; I agreed with them that it was very sad that Norah had died. After a couple of months of this I got stuck, I wasn’t processing my own grief. I felt more distraught than ever before but I carried on replicating the grief of people around me. When I didn’t have to be with people, I slept. I slept for almost three months, day and night. My grief merged with depression. My family helped me see I was trying to use imitation to grieve and it wasn’t working. We found ways to help me access my own grief; we used a candle to trigger a daily conversation about Norah which gave me a dedicated time and space to feel my own feelings. I also built myself a new routine to pull me out of the fog and reduce the daily changes and subsequent anxieties which helped me move forward.


Understanding my autism helps me understand grief and the world I find myself in, I know grief is different for everybody but grieving with autism brings with it it’s own challenges. I am grateful to have a very supportive family that give me the spaces I need to be who I am, and day by day I find it a little bit easier to understand and process grief and parenting without Norah here.

 

One Comment Add yours

  1. Roo says:

    What a staggeringly beautiful account.x

    Like

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