Sarah Boon

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 plan to write my next blog post of the grief some autistic experience after a late diagnosis. #AskingAutistics Please let me know your experiences with this (if comfortable)

— Sarah Boon #StopTheShock (@Saraheboon) January 16, 2021

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. 

Getting a late dx (42) was in hindsight a game changer, but it took another 5 years before I started to learn about autism and what it meant for me, mainly because I was brought up to believe that I didn't matter and not good enough.

— Sarah Douglas (@Sarahhdbristol) January 16, 2021

Diagnosed at 47 followed by approximately 2.5 years of struggling to accept this. Just starting to be ok with this 3 years in. Sad for the younger version of me who was so misunderstood. Still don't know how to make this right.

— Anna P (@APre570n) January 16, 2021

 

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. 

Not official dx yet but I know (have adhd; ptsd). I’m in the thick of making sense of what I already know was a traumatic childhood growing up evangelical. Autism helps make the “why” clearer but there’s a lot of anger.

— COVID is a “mass disabling event” -Imani Barbarin (@meagan_newberry) January 16, 2021

I think there can also be grief for the (failed) neurotypical identity. It’s saying goodbye to that identity, which I had for decades. As nasty as it was, it was a part of myself.

— Autie scientist (@autiescientist) January 16, 2021

It's one hundred percent a kind of grieving process because you didn't get the support you didn't know you needed, wonder why people missed you, and have little/no support as an adult. It's hard to know what to do or where to go.

— Dr. KitKat in Space (she/her) (@KitKatInSpace) January 17, 2021

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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