When a sudden loss happens.

How to make sense of sudden changes during ever transient times

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Wonderful neurokin this newsletter comes with a Content Warning. I’m going to briefly talk about death in this article.

It leads in with the subtitle Sudden Loss. If you don’t want to read about it, skip forward or close this down.

We humans are exposed to so much pain and destruction in our daily lives in the endless news cycle and social media.

You have the right to choose what information you want to consume.

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Dear neurokin,

The plan was that I was going to follow a neat little path to explore transition. To help you, and me, to make sense of how transitions affect us neurodivergent folk.

For you are here, reading Belong…we are neurokin, because you are exploring what it means to live a neurodivergent life. You may be exploring this for yourself or for a loved one going through this.

When you discover a vital piece of information about yourself explaining how you differently experience the world and connect with those in it, you go through a major transition. It’s impossible not to.

So the topic of internal transition is a big one for us to navigate.

“I didn’t get a chance to say goodbye”

Sudden Loss

A couple of weeks ago my husband’s brother died suddenly and tragically.

It’s been utterly heartbreaking to witness the devastation of the loss and grief this means for my husband.

It’s the first time our children have lost someone they love. The intensity of the loss and ways in which they’ve reacted to it have, of course, been different.

For our child who’s dominant neuro type is ADHD the news was devastating and his upset was intense, evident, palpable. It felt overwhelming for him and that showed.

For our child who’s autistic in their dominant neuro type, bewilderment at how to react and feeling of guilt and shame at not reacting in the “right” way were evident to me.

I understand how the autist sense making and fear of not responding appropriately weighs heavy. His upset was also intense and it was all happening inside, it was a struggle for him on multiple levels.

He had a shared interest with his uncle, football. This means that every time something new happens with his team he’s reminded that he can’t share it with him and he feels that loss all over again.

I’ve tried to continue to function amongst the grief, during these already bewildering times, as best I can.

Over the past 2 weeks I have actually attempted to continue with writing you an article that provides you with resources to follow the neat little line of a transition process, that has previously helped me to make sense of inner transitions:

• Endings

• The neutral zone

• Beginnings

I am pleased to tell you that I listened to my energy and emotions and threw in the towel. I stopped pushing against my own overwhelming sadness and struggles with navigating this loss.

I didn’t try to do all the things for all the people and ignore my own needs.

A photo I took when I was in Spain. It was taken in a moment after I decided to surrender to the loss I was navigating and stop trying to write a perky article full of resources to help you navigate internal transitions.

Slowly I am learning how to live my own neurodivergent life.

Autism and grief

Autism and grief can be huge, for reasons I will explore with you here.

Autistic people experience loss in ways that allistic people don’t.

Grief can come from the loss of a routine, or the ending a relationship with a person who is still alive, loss of a deep interest that you shared with a person who is no longer around, or when expectations change.

I was reminded of this when I listened in on an excellent episode about autism and grief on the brilliant Autistic Culture Podcast.

The episode is packed full of great advice from both show host

Dr. Angela Kingdon

and Mady Snyder about:

• Emotional Intensity

  • Being a Hyper empath and how this means feeling the suffering and pain of others in their intense loss. I feel other people’s feelings, and relate heavily to this. When I see complete strangers cry or look utterly crushed in sadness, I can’t not absorb their feeling. So when it happens to someone close it’s like a tsunami in the absorption of their emotions.

  • RSD (rejection sensitivity dysphoria)- from the loss of relationship or loss of the person; you can feel rejected and abandoned from that loss.

  • No closure. Suddenness of loss can create a huge grief in itself “I didn’t get to say goodbye”

• How grief hijack’s our nervous system

• How interoception; Alexithymia “I don’t know how I feel” means sadness looks different for neurokin.

• Our internal and external worlds can feel misaligned. Often, we can’t make sense of the huge loss and don’t know how to express that.

The thing that most chimed with me was when they talked about ambiguous loss.

Ambiguous loss

“This was not the plan!”

When we humans are subjected to constant change of magnitude; pandemics, wars, climate emergency, governments that wreak havoc in their disruption and disturbance in our lives, we are dealing with loss in ways that can be difficult to fathom.

This kind of loss, the ambiguous kind, is huge in the multiple layers of grief it is subjecting us neurokin to:

• Uncertainty

• Unexpected changes

• Waiting for it all to “calm down”. Waiting for the disturbance to be over (“Will it ever be over?!”)

• Constant disruption

• Change to your expectation of how it was supposed to be.

• Change to your relationships - loss alters how you are in relationships with people and who you’re in relationship with.

• Loss or change in routine

When

Dr. Angela Kingdon

shared her experience of having to adapt her plans and her whole business during the pandemic “waiting was not part of the plan!… “I don’t want this other life!” I realised that living with and witnessing the chronic illness of my husband over these last 5 years, I have been dealing with my own ambiguous loss over and over again.

Loss is hijacking my nervous system, constantly. It rarely gets a break from hyper vigilance and from being in sympathetic hyper-arousal.

I’ve been constantly screaming inside my head, for a very long time “I don’t want this other life. When is the life I want going to start?!”

And, yes, I feel guilty for typing those words, giving them space to be outside of me.

Because, of course it’s more awful for the person who has the serious or chronic illness. And, it still creates loss for those sharing a life with them.

My routine and my expectations are constantly altering to fit loss.

You just get on with it

Of course the internal ableist in you will tell you that. Capitalist systems scream it at us.

Loss is just a natural part of life.

Yes, and it helps when you:

• Acknowledge the loss

• Process the pain

• Make meaning of this for yourself

Questions to help you make meaning of loss for yourself

It’s ok to acknowledge this doesn’t feel good. It doesn’t need to be fixed, no one needs to rush to take your pain away; it just needs space to be seen and heard - by you:

1. What loss are you navigating right now?

2. How is the grief of that loss showing up for you?

3. Will you take time to record this (in a way that works for you: write, draw, voice note) to acknowledge the loss for yourself?

What I need to help me navigate this loss

My dearest neurokin, I love writing for you.

I love that Belong…we are neurokin is resonating with you and that you’ve subscribed your support to it, that you take the time to read what I write and to share your thoughts and comments here.

I am going to keep on writing and I need to ask for your understanding that my articles will be more sporadic over the summer.

My priority is helping my family to navigate this grief of our loss.

Andrea x