intolerance of uncertainty

autism and anxiety

 The two most frequent co morbid diagnoses of autistic individuals are depression and anxiety. 
Anxiety is present in the majority of autistic individuals, although it is not considered caused by our autism.

 In effect, our anxiety is likely due to circumstances surrounding our autism, and related to having confidence ( or having no confidence) in our ability to handle situations that come up in the process of living our lives.

One theory which has gained understanding and helped many anxious people is “intolerance of uncertainty”.

 In early 2000’s, a group of scientists developed an “anxiety test” that centered on self reports of situations that caused anxiety. 
The doctors observed that the most difficult obstacles for many anxious people to deal with were the “unknowns” .

  We deal with these issues every day of our lives, regardless of our neurology. 

We never know how somebody else is going to act or react, we never know when troubles or distressing events will descend upon us from loss of loved ones, illness, injury, change of living conditions, relationship status, to political and world events far beyond the ability to control any of these things in our every day lives.
 We can have anxiety over one or all of these struggles, and more.

 How do we cope with the unexpected? Do we have insights or skills that can be learned to help us feel more competent to deal with unforeseen events? It seems obvious to me that just telling me I can’t control certain things in my life helps me cope with the worry and the distress I have over unexpected or uncertainty for anything in my future. 


I can understand how this may be particularly difficult for many autistic individuals, since most of us feel very inadequate to handle many things in our lives, from social interactions to struggles with bullying, workplace misunderstandings and problems with performance or sudden demands of any sort.  It seems to me that “intolerance of uncertainty” is behind a lot of autistic behavior. Consider ODD  where sudden demands for performance of any sort are rejected or opposed . Consider the times we “freeze” when suddenly asked to perform, respond, answer a question, or act spontaneously in any way. Note that catastrophizing is rehearsing potential struggles and thinking about how we might cope with those, dreading the inability to do so.

 Many autistic individuals may react this way to the unexpected because we may feel unprepared to meet the demands placed in front of us. 
I know this is true for me. Is it true for you too?

 I understand anxiety is not specific to autism, but that this may be true of any individual who struggles with being anxious in so many ways. 

Things that neurotypical individuals don’t bat an eyelash at can send us into a tailspin.

 I can see how we look for predictability and how we need to have as many questions answered about any new activity or expectation. 

We ( who experience anxiety over the unknown) want to be prepared to meet the demand, and we may prepare, rehearse, plan, and attempt to develop scripts or imagine how we will react if called upon in new circumstances.
 When the unexpected happens, we may simply lack the confidence, the experience, the insight, nor do we believe we have the ability to apply previous experience to this new and different circumstance.

 Autism for many of us prevents us being able to apply previous experience to new situations, or finding the appropriate learned response to something new. 

  There are entire bodies of work out there, scientific papers, individual and group therapies, and articles, blogs, discussions, books available about ways to “teach us” to tolerate uncertainty. I can’t imagine the hell of exposure therapy where people are repeatedly exposed to sudden changes and demands in a deliberate way to “teach us” that we can’t control certain events of our lives, and to somehow make these changes more tolerable.  I expect that for some, these therapies may help. For me, even contemplating such “therapy” sends my anxiety spinning and causes borderline panic… I could never force myself to deliberately experience such events. It seems my entire life has been a continual series of such things anyways!


 I wonder if it will be shown that most of the intolerance we develop for certain circumstances or possibilities is actually the sign that we are not confident to respond to, or to deal with the unexpected or unpredictable. Will preparing for possible events of the future help us feel confident to deal with them when and if they might happen? 
If we learn we have more options and that there are many ways of preparing for unpredictable events, will our anxiety ease and will we feel more competent to deal with the unknown?


So that’s why!

that feeling of discovery


We have all had them, those “aha” moments when ideas and details come together to form a complete idea and we finally “get it”.

I had the pleasure of spending some time with a fellow rock and fossil collector one recent afternoon. We explored and collected specimens in a local area that is well known and were able to share finds, thoughts and ideas. We had met on the internet and shared finds, thoughts, and ideas in a local collectors group for over a year, and agreed to meet “in person” for the first time to hunt specimens.

I have found this is a great way to make connections and to “find my own kind”, slowly getting to know somebody through internet interactions, messaging and emails… shared ideas, through posts in interest groups, using photos, asking questions of each other.

The transition to “real life” interaction was painless and without as much anxiety as I would have experienced in a group activity among strangers. The meeting was well planned with location, time, and expectations we both had well defined ahead of time. My slower processing speeds work better online and of course allows for better understanding.

As my companion and I walked along, sorted finds, and talked, he would ask me a question, and after I responded would be silent for a few moments, then would say
“so that’s why”.

I was charmed. I am sure I was seeing autistic thought processes in fully engaged mode.

The use of that word “why” seems to me to be a dead giveaway.

Interestingly enough, we shared similar family histories and early life experiences, had similar outlooks on life, and similar views. Like seems to be drawn to like. Life struggles he described sounded familiar to me. It stands to reason that over time some part of our selves find others we identify with, understand, and who seem to be ‘coming from the same place’.


In a world full of billions of humans I find that this seems to happen over and over. Amazing!

The “why ” questions we both asked each other (and gave answers to) were basic information sharing, about our rock and fossil collecting specimens, about geology and about others we both knew from the group, as well as about each other’s life histories and situations.
Where so many people tend to hide their struggles, many autistic people are open, frank, and direct about almost everything.

“Why ” seems to be what many of us (autistic folks) base our interactions on. We need details surrounding almost everything in order to understand.

I loved hearing my companion say “so that’s why”.
It was great feedback that meant I was with somebody who understood me and who I was able to understand as well. Finding somebody like that in today’s world is like finding a ruby in the sand on the beach. Rare and valuable, and infrequent.

Listen to how others around you use the magic word “why”. My friend does not identify as being autistic (yet).