Grief Post Diagnosis: How Do #ActuallyAutistic People Feel About This?

For me, receiving my autism diagnosis at age 24 was a euphoric sense of relief. I was happy and finally on the path to discovering my authentic self. I thought that my diagnosis would only be a positive thing. Although this is true for me most of the time, but I can’t help thinking what if. What if people weren’t so horrible to me if they knew about my autism? Would I had a better experience in school? Truth is I will never know as I grew up in a time when autism was starting to be understood, but masking and camouflaging was certainly not known about (Which I did a lot). Sometimes though, I still can’t help grieving over past events, which might have been different. I’ve also heard a few other autistic people who got their diagnosis later in life experience similar things. 

I wanted to see if experiencing grief was common among the actually autistic community, so I took to Twitter to see how people felt about it. 

I noticed that it took time for many people to process their diagnosis and what it meant to them. This is understandable as receiving an autism diagnosis is a life-changing event and can completely change your perspective of how you view yourself. That stuff takes time to understand. 

Some people were glad they didn’t know about their autism because the time and place they grew up, it would have been dangerous to be recognised as autistic on any level. 

This was slightly different for me growing up in the late 90s/ 2000s in the UK. I doubt things would have been anywhere close to perfect if I was diagnosed, but some things may have been better for me. 

Many autistic who replied had experienced grief with their late diagnosis, but for a variety of reasons, not just the what if responses I’d anticipated. 

However, some people mentioned viewing their diagnosis as very positive or validating. 

So what did I learn about asking autistic people on Twitter about grief post-diagnosis? Many of us experience it, but for a variety of reasons. There is no one singular thing we all feel while going through this process. I guess that just highlights how diverse the autism spectrum is! 

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One thought on “Grief Post Diagnosis: How Do #ActuallyAutistic People Feel About This?

  1. I found out I’m autistic November 2020, and I definitely identify with this kind of latent clinging grief. One way my autism affects me is through really slow, deep, processing speed, and it feels like I’m still re-processing my entire life, one memory at a time… All of the missed opportunities are really obvious. A couple of accommodations would have made the world such a better place for me. BUT…the grief is balanced with such a better understanding of myself and my abilities.

    Thanks for writing on this topic and for highlighting our voices and experiences! ❤

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