Grieving for Autism

There is a grieving process that happens after a diagnosis later in life. But it’s not grieving for the autism, it’s grieving for the effort that you’ve had to put in your whole life trying to be someone you’re not.

It’s grief for the you that carried that huge backpack of techniques for appearing normal, without knowing why.

It’s grief for the times you misunderstood situations, not because you were stupid, but because you weren’t capable of understanding them without support. Because the rationale behind them was alien.

It’s grief for the times you thought you were going mad, when you were just suffering from a sensory overload.

It’s grief for the times that you forced yourself to interact, even though you were already socially exhausted, because that’s what people do and you didn’t want to be different.

It’s grief for something intangible. Something that you can’t even be sure was real. Grief for someone you can’t be sure would ever have existed.

It’s a strange grief unlike any other.

There have been moments when I’ve wanted to slip beneath the comforting waves of, “It’s not fair”. How easy it would be to let that wash over me. How warm and enveloping the lapping waters must be.

But whilst I paddle in them every once in a while, dropping beneath the waves would be the wrong thing to do.

There is nothing new in Heaven or Earth. But there is a necessary period of adjustment, and some of that isn’t fun.

Some of it isn’t acceptance and knowledge and togetherness.

Some of it is ranting and ignorance and unfairness.

Grief, anger, joy, elation, these are all a part of acceptance. Let them wash over you, but don’t drown in them.

Acceptance lies beyond the waves. Acceptance of who you are is not a high or a low, it’s a gentle confidence. The more you try to force it, the bigger the waves, and the further from reach it drifts.

It’d be nice if people just understood. It’d be nice if you didn’t have to splash to be accounted for. It’s that splashing that makes it harder. That new battle when you have to explain to the people around you who you are, how you’re different, how you’re the same, what that means.

And they have to go through the same stages as you, but they’re often grieving the wrong bit. They’ll grieve for the fact that you’re different. They’ll grieve for the fact that you’re autistic.

They’re not inside your head. They can’t see how you’ve always been different, you’ve always been autistic. That hasn’t changed.

The bit to grieve, is the pretence that you were neurotypical.

Because that was the harmful bit. That was the bit that made life harder. That was the bit that could have been different. That was the bit that could have been changed. That was the waste of time and energy and health and so on and on and on.

Going forward life will be different. It’s been noted that post diagnosis, autistic people often become more autistic for the simple reason that they’re not using all their energy to mask who they are anymore. They’re using it on positive things, instead of suppression.

So don’t grieve the wrong things.

Don’t grieve too deeply.

Don’t get lost in what was, when what is holds so many possibilities.

Grieve just right and we’re all there with you.

24 thoughts on “Grieving for Autism

  1. This is true for so many people of all kind I think. I could so relate to it! I had to fight for almost 20 years to get someone to belive me – that the pain in my body was real and didn’t was because growing, lazyness or any of the stupid things they said… Finaly I got a diagnose and I was all YES!! And then it hit me that nothing really had changed. People around me would still not understand and there were still so many things that I would never be able too do… So you are grieving for some time and then I guess it slowly dawns on you that you are still you and that is totaly okej ☺

    Liked by 1 person

  2. I’m in the process of self-diagnosing. I follow your posts with such interest; you seem to be able to beautifully articulate some of the thoughts and feelings I have. Thank you.

    Liked by 1 person

    1. You are very welcome. I’m still finding out that more and more of my actions and impulses are shared with other autistic people. It’s an interesting journey full of constant revelation.


  3. Ciaran Clarke a psychiatrist in Dublin, recently published a paper recommending unexplained pain in young people could be explained as undiagnosed Autism. Sad to think the those autistics who develop magnificent masking and coping strategies suffer simply because they are skilled. Girls are most at risk. A late diagnosis should also being an awareness of skills neurotypicicals do not develop.

    Liked by 1 person

    1. Very true about the skills. I think those passing have had to be ridiculously inventive and creative for so long. It’s a good skill to have, but even better to know that its use is optional.

      That paper sounds fascinating.

      Liked by 1 person

      1. You can find it online, search under Ciaran Clarke psychiatrist Dublin. Amplified pain. Worth sharing with medical profession and others. I think current pressure girls live under is causing greater difficulties than earlier generations of ASD females. What it is to be a girl is highly socially skilled and high maintenance. No wonder so many are embracing transgender as a cool escape route. Feminism needs a reboot.

        Liked by 1 person

  4. Good post. I can relate. I went through all sorts of emotions after diagnosis, but eventually reached acceptance. Your description of acceptance as a gentle confidence resonates with me.


    1. It’s a tumultuous time for emotions. Aspies by nature are researchers too, so we tend to throw ourselves into analysing everything based on the new knowledge. Acceptance can sometimes creep up on you when you’re distracted by other things.

      Thank you for your comment.

      Liked by 1 person

  5. I was diagnosed in April. I was happy at first then in complete denial as I tried yet again to fit into a job designed for allistics. I mucked up the courage to quit and it has been nonstop grief since. Not sure how long this will last.

    Liked by 1 person

    1. I loved my job, but on some level it represented an allistic identity I now know I never had. And you’re right I’ve acted more autistic.

      Liked by 1 person

      1. It takes time to work out how to stop trying to bend so much to fit, and instead actually find a path that fits around you.


  6. Absolutely amazing post Rhi. My wee lassy is 10 and was diagnosed at 4 and a half thankfully. This has given her provisions like speech therapy, occupational therapy, her school working with an education psychologist as well as being in a base specifically for ASD kids in a mainstream school. The past few years this has been becoming increasingly hard for her. Academically as well as emotionally and socially. She has severe anxiety and her separation anxiety has come back with a vengence over the past months.
    At the moment the school is looking into the right secondary school for her as she will be going to high school next August. I hope she will be placed in the right setting for her. If I don’t agree with the high school choice I will definitely be appealing it.
    Sorry for the very long rant. I’m just a very concerned mum at the moment and desperate for some advice. There’s no better advice than from an autistic woman herself.
    Loving your blog btw.
    Dawn xxx

    Liked by 1 person

    1. Thank you 💐 rant is more than welcome! It’s so important getting the right space for your child to flourish. Secondary school is a big change, and the right support can make all the difference.


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