Grieving an Autism diagnosis

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For many adults a diagnoses comes with positive emotions such as relief, now I can be more myself, I am not a lazy bum, drama queen etc. Scorning parents who grieve their children after finding out has been a part of the neurodiversity movement since Jim Sinclair wrote the movements founding document ‘Don’t Mourn For Us’. I have done my part to spread this by posting happy late diagnosis stories. While my motivation has been to spread the idea that being autistic does not mean automatic failure I might also be spreading an idea of how you are supposed to react. There is no right way to react to a late diagnosis, you are the one autistic in the saying “when you have met one autistic you have met one autistic”.

Grief of a late autism diagnosis
Harriet Ring is currently doing her Masters in Media at RMIT, and is a freelance writer and advocate for autistic women like herself from Melbourne/Naarm.

It's not grieving the diagnosis.
It's grieving the life before the diagnosis.

It's just like going through the grieving process for having been abused as a child.

Here is a link to  "Don't Mourn for Us"  in a downloadable PDF.

Very well-put, magz. Yes it's self-gaslighting and I'm still prone to it, in my worst moments. I'm sorry it happened to you too. It seems very common for men and women with late diagnosis or late access to descriptive terminology which can make sense of it all. Learning the term and the concept of "sensory overload" was life changing for me. All my life I had no idea what to call it or how to explain it to doctors. I didn't even know that it was connected to the fact I felt so uncomfortable around people, or the fact I had restricted and repetitive interests. I thought it was irrelevant.

In my opinion I was a person with 5,000 disjointed idiosyncrasies too random and scattered to describe. No one told me that I could connect the dots and find one umbrella term of "Autism". When I finally discovered the word, it was such a relief to know I had one issue rather than 5,000 problems, and that there were resources for dealing with it as a whole.

Learning the right terminology (sensory overload, sensory processing, hypo- / hyperstimulation, stims, meltdowns, shutdowns, etc), has helped me make sense of my life and stop the self-gaslighting cycle.

I hope you continue to heal, as well.

What ever may be the impact-response --- I get it.
I think we all do

As only can we

There was definitely a demoralising effect for me when I got diagnosed, though at the time I'd been desperate for something to stave off my employers who were beginning to expect me to do things that an Aspie can't reasonably be expected to do, so initially I mostly felt relief.

I guess it was when I started hearing about how Aspies tend to be seen by society as inferior, and the realisation that outside of a workplace that had a politically-correct mission statement about disability, there wasn't going to be any appreciable help for an adult with ASD. So, for example, when there was pressure for me to attend a gathering or whatever, I could now see a reason why I probably wasn't up to the task, yet I knew it would be pointless to try to use my diagnosis to get them to understand, because so many people can't or won't make allowances for an invisible disability. I suppose before that I'd always thought that I had the option of changing my attitude or something if I ever needed to, but now I could see that I couldn't fix it, that to some extent I was effectively locked out. And that's my grief to live with.

The knowledge of this would have made my life so different in the '70s. Finding it know has answered so many unknowns for me as well as confirming my wife's thoughts and suspicions.