Do look back, in anger: Has my autism diagnosis changed me?

Do look back in anger.

To take a look back. 

To see where I was. 

To see the distance travelled. 

To acknowledge change.

This was the challenge set to me. Having taken part in a GoodEnoughChats podcast, I left that on a shelf and moved on. I moved on with life, work, and all the things that are ‘normal’.

I moved on, being a parent as best I can. I moved on to a new employment situation and a new role. I also moved on from my autism diagnosis, learning to be me and what 'me' is.

The challenges continued to come, the mental ones and the physical, but something had changed. A subtle difference, but a difference all the same.

The diagnosis changed me far more than I ever thought, or even hoped it would. All of a sudden, I had a tool with which to help my head. I could now reason that a situation was (in part) because of my autism, but that then allowed me to change the perspective I was interpreting the situation with.

This recognition has also brought about a change in how I treat myself. I now build in rest, which sounds a bit glib. 'Oh, what’s Nick doing in front of the telly, just resting…'

Rest is something that allows me to recharge, to fill my emotional bucket, to repair the emotional damage. It doesn’t have to be physical rest; often, it is not physical rest, it is riding my bike or going for a walk.

It is a space in which I can let my head be quiet, where it can scream, where I can cry, where I can laugh, where I can break things, and where I can make things. This is the hardest part of being me/autistic - trying to explain this. I watched a TV programme, Astrid in Paris, about a young person with autism who lives in Paris and works with the police, helping to solve crimes.

There is a part in it where she is at a self-help group, and someone says to carry five beads with her. Put all the beads in her right-hand pocket until she feels that something or someone has caused a drain on her, and then move the bead to her left pocket. Make sure that she never puts all five beads in the left pocket. I really liked this analogy and wish someone had shared that with me. I wish someone had diagnosed me earlier, but more on that later.

Sadly, I am not very good at moving the beads. I often mask and forget about the beads. I take on other people's emotions, I feel conflict even though it’s ‘banter’, and I take language very literally. Once my bucket is not as full, the language issue becomes more acute.

Even more sadly, it is those whom I love and trust the most who see the worst of me. They see the broken person, the person who feels like they have nothing left to give, the person who has just run out of emotional energy. They are the ones with whom I don’t mask, I can sometimes - but not very well - and so it becomes them who suffer when I don’t move the beads.

So, to return to the rest... It is crucial for me so that I can be the person that they love. I can also be the person that I love when my bucket is full. I wish I knew what fills my bucket. I have some things that usually work, but not always, and this is the biggest danger of not moving beads. There is no guarantee of what will work next time. The usual suspects are cycling, photography, music and TV, but then if I get a flat tyre cycling, or a character does something sensational and obviously out of character for them, it strips my bucket bare, and I have to start again.

So, to return to wishing I had been diagnosed earlier. I do wish I had been diagnosed earlier, but I am also glad that I had to find my way without a diagnosis. I am glad because I found my coping strategies. I found ways that work for me without having to rely on others, mostly.

The biggest reason I wish I’d known earlier is so that I could have avoided the burnouts that my family and I have had to endure. I would possibly have less of a CV as I may have been able to understand/been understood by my colleagues better.

The world is many things, but it is full of people saying what if I can no longer do that. I have lived and lived well and will continue to do so for as long as I can.

Having dared to look back, I can see more clearly going forward. I can see the changes that I have made and how they have made my life better. That, in turn, has made me a better person for the people around me. I still get it wrong, I still forget to move the beads, but it is less frequent, and the fallout lasts less time.

And that feels like progress to me.