Anxiety and panic in a world of uncertain events

Everyone feels anxious sometimes, but not all of us get the heart-stopping "grab you around the throat" can't breathe can't think panic state that can be a daily event for people with autism. One of the characteristics that I share with people on the spectrum is a tendency towards stress and anxiety whenever events are not predictable - over the years I have developed many strategies to deal with this part of my personality, to the point that only those closest to me have any real idea of my great discomfort with chaos and uncertainty (my husband likes to point out that future events can actually never be predicted with accuracy, but I don't really like to think about that).

This past weekend, I had an experience that triggered a sudden and intense "all the wheels fall off" level of panic that took me by surprise. We were camping and my family had spent the day kayaking and hiking. When the storm clouds boiled up behind us and the thunder started, we were still several lakes away from our campsite, with no obvious good choices for safe harbour to wait out the storm ...



... another roll of thunder and a glance over my shoulder, and the switch flicked ... instantaneously panic ruled while the thinking part of my brain fled to parts unknown. According to my husband (who has a gift for images), my eyes rolled up into my head like Black Beauty and I started paddling like a windmill taking us in no particular direction. A dying whisper of logic told me I wasn't making us safer, but I couldn't stop.

In retrospect, I can tell you what happened inside my head. Because we have lost one of our children, my greatest fear is that something bad will happen to one of my other children or their spouses/partners or my husband. At that moment, everyone near and dear to me was bobbing about in small boats on an electrical conductor (water) with lightning on the horizon and winds rising (the thunderstorms have been spectacular this summer)  ... no available solutions, no way to know if there was going to be a good ending ... and so: panic, can't think, can't breathe.

Most people can recall a situation that caused them this level of anxiety and panic - the memories stand out because they are unusual. But for people with ASD, this state is unfortunately too common. Many behavioural and emotional outbursts are rooted in the anxiety caused by events moving swiftly and unpredictably, with catastrophic endings always a very real possibility. Difficulty with "reading" other people, with understanding verbal language, with being able to express thoughts/feelings all combine to make usual stress reduction strategies ineffective ("talk it through with a trusted friend" doesn't really work out) - even highly verbal individuals find that their language and logic skills desert them in this state. The more "unknowns" in any given situation, the higher the stress/anxiety and the greater the possibility of an unthinking panicked response.

drawing by Adam

Drawing is a strategy that works well to reduce panic and anxiety in the daily life of ASD individuals - sitting down with a big piece of paper after a blow-out, drawing out the various pieces of what happened and connecting them together, filling in the "missing" pieces (thoughts and perspectives of others, what people meant by the words that they said, facial expressions and voice tone), hearing the perspective and thoughts of the person with ASD (what did they think was happening? what did they fear?). Then using this information to make a plan for "next time" - identifying "choice points" (where the string of events could have been changed), defining the available choices, making a plan A & B & C, identifying "safety people" (who will know what to do to help) - basically, you're putting together concrete visual information to fill in as many "unknowns" as possible, to help the person do the thinking ahead of time so that when the panic hits there is a logical workable plan to access.

These strategies are not 100%, but they do work to bring the frequency of panicked situations down to a more usual level. There are always going to be times when you're stuck in a small boat in the middle of a lake in a thunderstorm, but it won't be every day (or multiple times each day) - and if you've built up your "street cred" by regularly helping the ASD person to find workable solutions to seemingly unsolvable daily problems, they may trust you in that unusual situation when you ask them to just put their heads down and paddle for the beach.

... which is what we ended up doing (head down, around the point and the around the next one, storm veered left and we veered right) ... and thanks to my husband for talking me back from the edge!