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!

The right to be different

My mom tells me that I started out as a very quiet child -  so quiet that had I been born in this era, rather than in the 1950's, I would no doubt have been in a specialist's office with a diagnosis pending by the age of 2. I talked late - barely babbled, didn't try out words, was a silent presence in the room until the age of 2 and a half when I suddenly started to speak in sentences (according to my mom, my first words were "I want a cheese sandwich please" during lunch at a neighbour's house).

I was an eccentric little person, always thinking much more than I spoke, and expressing odd thoughts when I did speak - when I was 5, I "cracked the code" of reading one day and could suddenly read everything I looked at (I still remember how cool this was - one of the great joyful days of my life). I grew up in the country, and loved the freedom I had to disappear into the ravine, climb a tree and let my thoughts run for hours without interference from other people's questions and demands (as long as we showed up for meals, it was all good). When I went to school, people did start to categorize and test, but my parents kept me unaware of those discussions - I was talking at that point, and I could "do" school, so I got to be "gifted", a label that allowed me to be as different as I wanted and no-one would tell me I had to conform.

This is not exactly fair, is it? If my diagnosis had been "autism" instead, I would not have been given the freedom to develop and learn in the way that best suits my brain "flavour" - not allowed to choose when to socialize and when to retreat from the world of people, not allowed the quiet and solitude I needed to think my thoughts through to the end. People would have assumed that I was thinking nothing when I stared off into space for long periods of time, not responding to the words of other people (by the way, I still do this, to the great hilarity of my husband and sons). My strong (obsessive?) interests in favourite topics or activities, my "stair step" development of skills like talking and reading, my high stress in situations with too many unknowns would all be taken as further indicators of my oddity. Well-meaning therapists would set out to "fix" me. I would hate that.

All good therapy starts with respect for and knowledge of the individual who is the "target" of that therapy. People with autism think a lot more than they speak. Their optimal learning style may be nothing like a "usual" or "average" learning style, but what's so great about "average"? We put too much stock into "developmental norms", which are nothing more than population averages - no real person looks like a statistical "norm" - when we average out development, we lose all the interesting bits.

drawn by Adam, age 17

When we focus on bringing people with autism back to the "norm", we can unintentionally give them the message that who they are and what they're thinking and saying is not acceptable. Communication provides a bridge between the "average" world and the slightly more "unusual" world of autism - if parents and teachers are willing to hear what is really said and teach to the differences, the result can be learning on both sides of the equation. Different doesn't mean "wrong", it just means "different" .... and different can be pretty cool.