Monkey Bars- How Grief Impacted My Autism

Today I am writing about a topic that was very intense for me as it is for all of us. Grief.


Last year my grandmother passed away. She along with my mom raised my sister and I. We lived with her for almost my entire childhood. In many ways it was equivalent to losing a parent.


Grief was hard. What no one tells you about grief is how truly ugly and terrifying it is. You have nightmares, you see things, and I personally slept with the lights on for weeks. But grief did something else to me that I did not expect. It triggered harder parts of autism for me.


For years now I have successfully managed the harder parts of autism. I rarely have meltdowns and I can keep myself together in most situations. However, after my grandmother passed certain things started creeping up again. To the point where I couldn’t control them.


In the first weeks I was toe walking again. I was fisting again. I was agitated. I was stimming constantly. I usually always have some type of urge to do these things but I can always control them and wait until I am in a safe space. This was different. I felt like I was 8 years old again, unable to control anything. It scared me.


My initial thought was fear. I have worked so hard to be able function in this world. And it wasn’t fear because I am ashamed of who I am or the behaviors. It was the fear that I was losing control of myself and eventually would no longer be able to even handle simple sensory anymore. And that is scary. I did not at all enjoy the time in my childhood where every touch felt so intense that I burst into tears. Or the feeling that I couldn’t go out in public because the lights and sounds were too much to bear. Although it is still a lot, I can now manually filter a lot of the overload and wait until I get home to crash.


So why was this happening? I have thought a lot about it and realized something.


These were things that I do to comfort myself.


The toe walking and spinning, even the flapping and fisting are all forms of re-centering for me. My way of expressing myself and handling my emotions. It was something familiar to my mind. If I am agitated, the fisting helps my mind to create an outlet, the spinning helps to filter the overload I am experiencing, and the toe walking creates a sense of stability. To this day I often toe walk without realizing I am doing it. It is natural.


In a time of crisis our minds do what is comfortable to heal itself. To all those on the spectrum that may face a time of crisis such as grief or a traumatic event I want to reassure you. If you find like I did that you cannot control things that you were once more easily able to, don’t fight it. Let your mind heal. Allow your neurology to be itself and take the steps it needs to become whole again.


And know that even people who are not on the spectrum experience major change during grief. These are not setbacks. It is simply part of the process.


Eventually, I did regain control. I still have trouble when I am overtired or stressed but this is normal for me. I no longer feel that my mind is unable to handle even the small things that I worked so hard to adjust. It will get better. In the meantime, allow people around you to help you.


And take comfort that at least for me, this was not something that eventually led to me not being able to handle grocery stores or other sensory intense situations like it used to be.


It was my healing parts of autism that helped me most through grief.


I encourage anyone going through something like this to reach out and join groups or communities. The more you face it and talk about it, the better you heal.


Autism and grief will now forever be a very interesting subject to me. I think our neurology certainly handles the process differently. I hope that my experience can help others better understand how our minds handle the grieving process differently.


3 thoughts on “Monkey Bars- How Grief Impacted My Autism

  1. I am sorry for your loss. I am grateful that your behaviors were restorative for you. I can remember when my child was young, I would remind her when she was upset to suck her thumb. Her grandfather did not like me telling her this, but it was so plain to see that it was something that comforted her. Finding what comforts you is invaluable!

    Liked by 2 people

    1. Agreed! Thank you for your comment and welcome to Edge of the Playground!

      Liked by 1 person

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