My brain just won't do it: Autism and sensory chaos

 

I've struggled with this for as long as I can remember, yet almost nobody knows. I've become an expert at compensating for it. But every time my sensory processing deficits leak into my daily life, I face another battle to regain self-acceptance. 

I have autism, which makes me unique, loyal, honest, and objectively a pretty cool person. No seriously! But one thing I really wish I could change is the constant chaos caused by my sensory hypersensitivities.

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My brain isn't efficient in deciphering the world around me – it does so very slowly and not in real-time. In a familiar environment I have few problems. But introduce me to a new room, and I will most likely struggle. 

It's alright if my interactions with the new environment are straightforward. Say for example that I'm going to a meeting with a new person in a new building. I can use a map to find the building and I can find the room as long as it's in a logical place. Upon entering the room I will quickly establish the location of the visitor's chair, and that's often all that I need.

But say instead that I'm going to a social event at an unfamiliar venue. Upon entering, I must quickly scan the environment so that I can figure out where to hang my coat, who to walk up to, and where to get a drink. But as soon as I walk in, sensory inputs bombard me from all directions. There are tables, windows, glasses, smells, shoes, voices, dresses, people, music... 

I'm unable to process this into meaningful information like "walk towards the couch and say hi to Ryan". If I can buy myself "processing time", say, by chatting with a good friend while looking around the room, I might be able to behave like a regular person for the rest of the night. But if I don't get this extra time, or if I'm simply too tired, I can be so at a loss for context that I leave unannounced or break down and cry in the bathroom. May I introduce the infamous Autistic Meltdown, which must be hidden at all cost. 

I'm intelligent and emotionally pretty well-functioning. I don't have social phobia, and I'm not even particularly shy. If the circumstances are perfect and I can compensate well, I can give the impression of being happy, social, strong, emotionally stable and fun to hang out with. I struggled greatly with social interactions when I was younger, but these days I can do it, through well developed compensation strategies – many of which have formed subconsciously over the years. 

Yet, in every new social group I join, I tend to gradually build up a reputation for being quiet and slightly neurotic. The discrepancy can be confusing even for me, and it's painful to be regarded as shy or antisocial when that's not what I am. I just need things to be predictable and quiet! 

I am just autistic. 

Often, my symptoms of sensory processing deficits are subtle and without much consequence, such as not remembering places or details because I never actually took them in. Other times, it can get really debilitating. For example, when I woke up the first morning in a B&B, I knew I had to walk down the stairs, find the breakfast area, figure out how to serve myself breakfast, and presumably interact with the host in some way. I stayed in my room for several hours longer than I wanted, because I knew it would be such a challenge. I wasn't shy. It was just an absolutely overwhelming sequence of events to orchestrate. When I went to the university library for the first time, I sat down in an armchair right inside the entrance, and used my smartphone to study the library website for floor plans and other clues, before I felt ready to lift my gaze and begin to make sense of the physical environment. In college, I consistently avoided departmental functions. In my private life, I've generally – and sometimes subconsciously – found excuses to avoid social events. Eventually most people stop inviting me, which is both a relief and a source of immense pain. 

Most of the time my mentality is: "What's the worst thing that can happen?" I do keep pushing myself to do the things I struggle with and I've had quite an amazing life as a result (though perpetually exhausting). But truth is that I do fear the irreparable social situations that can result from not being able to make sense of the environment. 

Take this example from my early childhood: We were leaving the swimming pool and walked through the exit gate. Even though I could see another person approaching, I turned around and determinedly closed the gate right in front of them, then walked out of the building. Mom was upset and told me that people had been whispering and wondering what was wrong with me. I felt immensely embarrassed and stupid. Even though the sensory information had reached my consciousness, it wasn't synthesized into anything meaningful, such as "A person is approaching; therefore, do not close the gate". 

I have many unpleasant childhood memories of moving through a chaos of anonymous inputs without meaning, and even stronger memories of the social consequences of some of those moments. In my adult life, it has been even worse in some ways, especially in my 20s when I was still trying to go to social events and kept blaming myself very harshly for the social shortcomings that resulted from my brain's regular failures to compute the world.

Then there are the little things that don't matter quite as much. I can't cope with team sports and I find it hard to cross the street when there is traffic. When I tried to play laser strike I got so overwhelmed that I hid in a nook and cried. If someone gives me verbal instructions, like "grab a fork from the second drawer to the right of the fridge", I generally have to ask for a couple of repetitions while trying to figure out what it means. I find it hard to understand movies and most of the time I end up with no recollection of them afterwards. I watch them over and over to compensate.

I've found numerous little tricks for creating that little window of extra time that I need to process novelty. The main themes are: 1) preparing myself by visiting a venue before an event, 2) avoiding messy places, and 3) using my strengths to compensate. For example, if I'm going to get hands-on training on a new laboratory technique, I find a way to go to the room beforehand and map out everything that's in it, making sure I know how every piece of equipment works in detail, and finding out everything I can about what I'm about to learn (Google is my best friend). Then, in the training session, I am faced with minimal novelty and have a fair chance of avoiding a meltdown. This is a crazy-sounding approach, but it works, and the bonus is that I become a technical expert and efficient troubleshooter. The downside is that people think I'm obsessive-compulsive or insanely overambitious. 

But truth is that I'm really just trying to survive.

It's not fear. It's not something that I can "get over". My brain just won't do it. Sadly, the most successful strategy for dealing with the social consequences of it is to be alone, which is a strategy I sure have implemented throughout most of my life. When I make friends, I quickly find myself in untenable situations where I no longer can comfortably avoid parties or no longer can hide the disability. So I avoid making casual friends, and I pretend to be much more antisocial than I really am. 

But things have gotten better! As an adult approaching middle age, I'm beginning to just simply explain that I have sensory processing problems and therefore have some limitations. To my surprise, there have been no adverse reactions. It's okay with people if I go out for a quiet walk in the middle of a party to regroup. It's okay if I ask colleagues for some extra time to process new information. Learning to simply explain things without drama seems to be the key to acceptance and inclusion for me. Implementing this strategy and forgiving myself for failures is a continuous process though. 

I will always have this limitation, but I'm discovering that social isolation is not the only way to live with it.