Under the Weather

Dear Friends,

Wow, am I ever feeling run down. I have been pretty low in energy the past couple of weeks, and a busy couple of days at the end of last week really drained me. It is so frustrating to not have more resilience in my body, and tough to understand how I am physically feeling and to identify possible causes for how I feel. Maybe it is a bug trying to get me, or something has thrown off my gut biome, or there is some change in external conditions, or my mental and emotional state are somehow altered, or who knows! I struggle to try to gain insight on these times of distress.

I am so needing wider understanding that my flavor of autism is such a physical disability. And I know many of my nonspeaking autistic friends have many more physical challenges than I do. It is such a central part of our disability: our bodies are not wired to function as we wish or need them to.

I am so proud of progress I have made in my coordination and motor control in the past couple of years, with amazing practitioners and near-constant inner work through visualization. I used to have autonomous and accent-less speech as a cherished goal, mainly driven by a desire to fit in but also of course a need to communicate more easily. I now know it is a very unrealistic goal, and that is a hard realization to accept. But I will keep working on my speaking, and I know I can still improve in that and many other motor skills. It is just a bit tough to acknowledge how much work it all is.

This is a bit rambling, but my main point is that for me and others like me, our apraxia is not just about our speech. It is our compulsive movements, inability to sit still, low interoception, strange noises, and even injurious behavior. It is why I can’t go out in public unsupervised except in rare situations (like on a sheltered beach away from roads), why I can’t cross the street on my own, why I am so nervous when I see police or security guards who might overreact to my odd behaviors, why I can’t always clean myself properly after using the toilet, why I express frustration or fear through screaming and gritting my teeth and stomping and galloping, why I am so easily tired. It is why I can’t cry even when my heart is breaking, why I can’t be sure I can call 911 if there were an emergency and no one able to help me, why I am often panicked when I realize I urgently need to relieve myself.

I am so new to thinking about my disability as a physical one. But that is such a central defining component of my disability: my physical limitations. It is a helpful shift in perception for me. I am clearly still in the early stages of elucidating what that all means. For today, however, I needed to share my thoughts as they are.

Your Friend,


Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s

%d bloggers like this: