When I was given my diagnosis I wasn’t sure what I was feeling. This was not just because I struggle with my emotions but because they were so many of them.
On the one hand, I was relieved that I hadn’t “failed my autism assessment”. Which also gave me answers to the question: Why am I the way that I am? It also helped me to contextualise the many perceived failures in my life. I could also now explain why I found it so hard to make and keep friends. The main emotion I think I felt was grief.
From what I have been reading this is incredibly common in late diagnosed adults. Why is this?
I think it comes from three main areas that, cumulatively, cause this sense of grief.
Firstly, you are grieving the person you feel you “should have” been. The life that you could have had if you either had the diagnosis sooner or if you had not been autistic at all. Personally, I look back to times in jobs and I think that if I had known then x, y and z could have been different. Would that have made a difference in my life? It is impossible to say but the fact that it “could” is enough for you to grieve that life. I look at how my neurotypical family and friends are thriving, or appear to be thriving, and I think, that could have been me.
Secondly, you think back to childhood and how you always felt odd and on the periphery of social groups. This may not have been the actual reality, but it was perceived at the time. The child that I was, often lonely and full of self-doubt and self
-recrimination, could have been supported. Who knows how I would have done socially, academically, romantically, professionally if I have known. Not only that I could have, potentially, saved myself lots of unnecessary misery. You grieve for the child and the adult that you could have been.
Finally, you can lose the sense of who you are. Before my diagnosis I would never have considered myself as person with additional needs or with a disability. The image of a disabled person or an autistic person did not match what I saw in the mirror. Yet, I have had to learn to accept that I do have additional needs and disabilities. This change in the sense of who you are shakes your very core. You grow up with one idea about yourself, on a fundamental level, and you are told that you are something different. Yes, it doesn’t change the fact that I try to be kind and openminded. That I try my best to be loving and all of that. But it does add a label. An albatross of a disability around your neck. Your sense of self changes and you mourn the person you thought you was. With acceptance of the condition then this alters but for some it can take a long time. It is a constant process and one which I am no way near completing. If I ever will complete it.
It is perfectly normal to feel grief after a late diagnosis of autism. It is a fundamental change to how you perceive yourself. With time, however, you can learn to accept this, to adapt your world to it and then advocate for others. While you are autistic it is not all you are. You can be amazing, loving, funny and interesting while being autistic. You can adapt your world to follow your autistic passions and you can ask for the help, back by law and a medical diagnosis, so that you can achieve in the different areas of your life.
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