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Jackie Schuld Art Therapy Blog

When Your Autistic Life is Out of Control

I talk a lot about what autistics can do to make their daily lives better and work with their autistic minds. I make suggestions like decreasing the number of social obligations in a day, structuring in recovery time, making space for special interests, and more. I’ve written a lot of essays about strategies (you can see them in my essay Learning Autism Strategies as an Adult).

But what if there are things present in your life that you can do little about?

Abstract multicolored painting by artist Jackie Schuld
Painting by Jackie Schuld

Sometimes there are things in our life that we have absolutely no control over. For example, accidents, illness, injuries, and death. These things are naturally difficult and there is no “strategizing” them out of our life (at least not in the short run).

Similarly, we can also choose positive change, but that change still impacts us. For example, when I was preparing to move to a new, wonderful place, I became overwhelmed. My autistic brain struggles with change. It loves routine and predictability. So any kind of change, even good change, naturally adds some stress to my life.

I unfortunately also experienced some major changes outside of my control - like the passing of my grandma (you can read about that in my essay My Grandma is Dying the Same Way My Mother Died).

I could not control whether my grandma died or not. The stress of her dying impacted me - I didn’t sleep well, my digestive system ran amuck, and my thoughts/emotions approached overload far faster than other periods in my life.

I know I’m not the only autistic to experience this. I’m certainly not the only human, but I want to address how it uniquely impacts autistics. Big life events can cause some of our autistic characteristics to become more prominent - such as digestive flare-ups, skin problems (my eczema also flared up), low energy levels, and more frequent autistic meltdowns.

So what are we to do?

First, we can accept that this is a difficult time. We can fight the urge to internalize this with thoughts like “Why is this so hard for me” or “Why can’t I handle this better” or “I wish I could just be strong.” Stop. Self-shame gets us nowhere. This is hard because IT IS hard. It is okay that you are impacted by change. That is normal and natural.

Second, we can do what is within our control. I hope you appreciate my autistic trait here of list loving. I have a list within a list:

  1. Provide space to ventilate. We need to give our minds extra space to pour themselves out. This is usually done best through writing or art because it slows us down. Make time daily to sit and write about whatever is on your mind. If it is hard to find the time, set a timer for 10 minutes. I recommend doing this in the evening so you have less on your mind as you fall asleep.

  2. Do everything you can for extra energy. Your energy will likely be extra low during this period, so it’s important to intentionally do everything you can to pour energy in. This could look like chats with invigorating people. It could be seeing a favorite movie. It could be spending time in nature. It could be ensuring you eat foods that give you a boost of energy. It could be extra exercise or reducing the amount you’re exercising. You know you best, so do what you can to gently nourish you.

  3. Move the stress through your body. Stress accumulates in the body, even if we’re writing and talking about it in the healthiest ways possible. This is a key time to move your body in ways that feel good. For example, taking gentle walks, extra time for stretching, dancing to your favorite songs, and more. What’s important here is that you make time for it daily. This is not a “one-time fixes everything" period of your life. Allow energy to move through you daily. For example, I decided to join a gym during this period so I could safely walk at night.

  4. Assign someone to make decisions. When big events are happening in our lives, our brains can become quickly overwhelmed and it can be difficult to make decisions. It can feel like we are living in a bit of a fog, or that we get easily upset and overwhelmed. This can be a great time to assign someone else to make key decisions. For example, when I moved, I had a designated person to help me with difficult decisions.

Now back to my bigger list. My third and final point: we can accept that there will still be a lot out of our control. We cannot control when grief sneaks up on us. We cannot control when our mind starts to think about upcoming plans. If I had all the answers here, none of us would ever struggle again. That’s simply not the nature of life. Similar to point number one, we can accept that this is a difficult period of life. I would like to emphasize the word period. Many times when we are feeling low, our autistic minds would like to convince us that we will ALWAYS feel this way and it will NEVER get better. That is not actually the case and this is a good time to remind yourself of that.


Thank you for reading. If you’d like to read more, sign up for my FUNletter or check out my book Grief is a Mess.


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