An Open Letter to Non-Autistic Friends & Family

A child hiding his face behind a large dark green leaf

An Open Letter to Non-Autistic Friends and Family,

We know you try to relate to us, your autistic loved ones. We appreciate it; we truly do. But in many ways, many of us keep hearing the message from people that they can relate.  You really can’t.  I will try to help you better understand, in writing, because I can express myself with more clarity in text than I can verbally.  A few areas that you may think you are relating well to us include social interactions, noise over-stimulation, and misunderstanding.  You might be shy, sensitive, introverted, or quirky, but that doesn’t translate to understanding our experiences.

Social interactions are downright draining.  We can have had eight or more hours of sleep and be exhausted after just a half hour of social interaction.  Not just mentally exhausted– physically, as if we just ran a marathon.  The social interaction can be pleasant and with people we are fond of– it doesn’t matter. It’s draining nonetheless.  Sometimes, in the right circumstances, we can give you much more time and focus.  Learn more about that by reading about The Jar Principle.

When we need to excuse ourselves to be alone or even to leave, please understand that all is well. We have just exerted all of the energy available in our reserves, and it’s time for a break.  

Noise can be exceptionally bothersome. Many of us love music, but I personally cannot handle music that is too loud. Even if we love the song, the sounds of many different voices in a crowded place, a sudden loud noise, persistent unpleasant noises, or a regular voice being heard for too long are all possible triggers for meltdowns/shutdowns.  When there are too many sounds at once, my brain can’t separate your voice from the television in the background or a fork grating against a plate across a crowded restaurant.

I personally shut down in places I don’t feel at liberty to scream or cry by trying to zone out, pretending I am not there and what I am hearing is not happening. If we are together in a loud environment and my eyes are glazed over like I’m in a trance, you can be sure that I’m disconnecting myself from the reality that is just too much to bear at that moment. We may wear ear protection, but keep in mind that those protections are not always enough.

We might seem to be very literal. This is because our body language and facial expressions may or may not match the words we are saying, but trust us- we mean what we say.  This is because we are wired for words, and our emotions aren’t as important to us as our facts.  Don’t try to read more into what we say.  Also, it is very confusing to us when you do not do the same. Please do not expect us to pick up on subtle cues.  We may or may not pick up on those cues; however, we are going to listen to and believe (or at least believe that you believe) the words you tell us. We are not lacking a sense of humor and we are not gullible (both of which I’ve been accused by either correcting someone or believing something that was untrue). Just as it is difficult for you to relate to the way our brains work, it is difficult for us to relate to the way your brains work. We can all work on that!

Undoubtedly, you have experienced times when you were not in a social mood, times that noises bothered you or gave you headaches, and times that you were both misunderstood and misinterpreted by someone else. We know that you have, but trust us, you can not truly relate. There is a difference between having times like these, and living from one moment to the next only ever knowing times like these. ‘

We thank you for wanting to relate and understand, but comparing us or saying that “we’re the same” is minimizing our struggles.  We have no choice but to push ourselves daily to be patient in a world where the people around us have totally different needs, values, and preferences.  Please be patient with us as we try to meet you on your territory and your terms, and try to reciprocate and meet us on ours sometimes.  You don’t have to relate to us to know us and love us.  

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4 Responses

  1. Very true! I’m pretty recently diagnosed and in my late 40s. I hadn’t realised how much I masked or felt that I am weird or rude because I can’t cope with going to a party, or even out to go shopping. It is freeing to know that it’s ok to be and do what is right for me.

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