What the Spiky Profile of Autism Looks Like
"For someone so clever you can be pretty dumb!"
The spiky profile in autism is one of the biggest tells if you are playing Autism Detective. Which you shouldn’t because disability isn’t a game.
But to get a better sense of what I’m talking about, let’s have a look at how the spiky profile manifests in me, Chelbo F.
Exhibit A.
I’m a published author but I cannot keep track of what day it is. Sometimes I know and sometimes I don’t. (Right now it’s Wednesday. Oops, no, Thursday. Ok, close.)
The problem is that the day names are arbitrary. And they all feel/sound/taste/smell the same. And they change every day. Just when I am getting the hang of what day it is, the day changes. It’s impossible to keep up!
Exhibit B
I teach Master’s students creative writing at university, and I’m good at it (apparently) but I cannot always find my way around my hometown. I also can’t read a map successfully. Or follow the sat nav instructions easily.
I have no sense of place. There is no internal mapping system. Nada. My experience of walking around is like being in a driving game, where the new location loads as you approach it.
(Does that make any sense? If you relate, can you describe it better?)
Exhibit C
I can write a pretty solid 1000 words an hour but I can’t cook without making a mess, physically and emotionally. Sometimes, by the time of plating up a meal, I am so stressed and uncomfortable that I want to cry.
My executive functioning defecit means I cannot plan the order in which I do things, unless I take the time to write it down in a recipe (which I will never do, obviously, because there’s no time, unless I get a support worker ). I try to do everything at the same time, which doesn’t really work.
Also, I can’t very well monitor my body temperature and so end up boiling hot and angry.
So yeah, basically the ‘hostess with the mostess’. If mostess is a substandard meal, probably cold, delivered with pure rage.
Less sensitive people in my life have summed it up like this: “for someone so clever you can be pretty stupid”.
Since I was diagnosed as autistic I understand that this spiky profile is a common experience for autistic people. If we are lucky, we excel in certain areas (for me: writing, books and remembering things about writing and books) but can lag behind the average ability in our peer group in many other areas.
Everyone has strengths and weaknesses, but in the autistic population, these can seem more stark. Hence the spiky profile. Some of the graphs are right near the very top, and some are really scraping the bottom.
Does this sound like your experience? How do you manage your uneven abilities?
I'm fortunate to have things I excel at. Many times in my life, I have felt my writing has saved my life. It has been something to hang onto when I have felt myself lagging behind my peers. At least I can write, I have told myself, kangazillions of times.
But having noticable strenghts can be tricky, too. Seeing my proficiency in one specific area people assume I am capable in many more areas. It is embarrassing to admit how much help I really need.
Historically, instead of asking for help, I have spent extra time struggling to overcome the latest challenging thing by myself (with the help of ‘my parents’, aka the Internet). My goal this year is to change this habit, and practice asking for help or admitting when I don’t understand what is required of me.
In the past, not asking for help has led to what I now recognise as autistic burnout. A state in which social anxiety becomes so high that I can no longer function. Autistic burnout is understudied in academia, though well-defined in the autistic community as the consequence of living in an unaccommodating ‘neurotypical’ world. It can be defined as finding “expectations to outweigh abilities” over a sustained period, something which research shows can lead to suicidal ideation as well as suicide attempts.
Asking for help isn’t just important, it can be life-saving.
I’m still looking for ways to deal with my spiky profile. My partner helps a lot, and my employers have been very supportive regarding reasonable adjustments, but I still feel I have a long way to go to make progress with managing this.
What have you found helpful?
The aim of this newsletter is to discuss what works and so as I learn more workarounds, I promise to share them. Please join me in this quest to help autistic people live happier and more fulfilled lives. <3
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Autistic Burnout Explained in Spectrum News
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Chelsey Flood is the author of Infinite Sky and Nightwanderers, and a lecturer in creative writing at Falmouth University. She writes about freedom, addiction, nature and love at Beautiful Hangover, and is also working on a non-fiction book about getting sober, and a new YA novel.
I can relate to trackless days and an experience of directionlessness.
Also, ‘things’ have no inherent order (the existentialists got it right). I have it impose some internally generated order, or I’m left moving between what I’m currently doing to the next thing that’s present. Not sure if this is an executive functioning weakness or lack of self-created purpose, the creation of which takes considerable courage to come up with and follow through on.
Chapter 5 Section 5, called ‘The Gift of Expertise’ in Malcolm Gladwell’s book ‘Blink,’ talks about the 'Triangle Test' at the end of the section. In it, participants are forced to hold a flavor in memory for a moment to compare it to a flavor experienced later. It turns out poorly unless you have a way to maintain existence for the experience of flavor, which usually only comes with the language/distinctions of expertise.
This beautifully reveals a fundamental impermanence of existence and the need to create a structure to maintain existence for our fleeting, ever-changing experience with our invented language.
A self-generated and maintained purpose addresses much as to create such exercises/demonstrates, most importantly to ourselves, our ability to maintain existence without the external prompting of circumstances.
Having been the 'Lost Child' in family systems thinking, there was little to no external pressure to organize around, and perhaps, as gate theory suggests, after a point, without having exercised that muscle, it may not later respond or only respond minimally.
I’ve been approaching my ‘deficits’ from the idea of redefining (for me) what ‘error’ or ‘mistake’ means. This makes my deficits my friends rather than resisting them. This befriending grants some freedom around being in error, allowing a natural correction process to occur rather than tightening around errors, thereby making correcting much more difficult and possibly creating cascading errors where getting back on course becomes impossible.
Consider being in error a natural state and focus on the RATE of correction rather than the state of being in error.
Yes that was always said to me too - first in line for clever, last in line for common sense. Totally relate to all of this and the spiky profile. I am only a year in to knowing and there’s still so much to figure out