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  • Writer's pictureAutistic Animist

Spoons, Spoon Theory, Autism and the Social Model of Disability

Updated: Apr 21, 2021

For day two of my 30-day-blogging challenge in April 2021, I want to dive right into the topic of spoons and spoon theory -- since this concept and dynamic has a profound impact on everything I do and how I do it, including writing this blog. If you’re at all familiar with autism, spoon theory, and how these things are related, then this is probably obvious to you, but if not, then I hope by the end of this post you will have some understanding of all of the above! And if you’re in a process of self-discovery and finding resonance with what I write, I hope you’ll come away with some useful language to talk about your experiences.

Photo by Gaelle Marcel on Unsplash

First things first: what am I talking about when I say “spoons” or “spoon theory”?

In keeping with my theme of giving you lots of resources to follow up on, I’ve included some links at the end of this post for digging in, but the short version is: Spoon theory was developed by Christine Miserandino to help describe the experience of chronic illness to those who do not experience it, and particularly the day-to-day process of managing a finite (and variable) amount of energy to do things, including basic, necessary activities. There’s an element of decision-making (I have the “spoons” to do activity A or B but NOT both) and an element of unpredictability (unexpected thing C happened and that used up all of the spoons I had, so now I cannot do either activity A or B).

Spoon theory has since been discussed and thrown around in conversations involving more than just chronic illness, but other disabilities as well, including autism. [Whoa, hang on! Do you consider autism to be a disability? This is itself quite a controversial topic. More on this a bit later on in the post.] Before I was diagnosed autistic, and before I even considered that there could be any connection between my energy levels and my neurotype (for which I was still waffling about whether or not I would accept the label “autistic”), I came across the concept of spoon theory and felt instant resonance. Finally, someone was talking about something that described my experience perfectly and for which I had previously had no adequate language.

But then the guilt set in. I had no diagnoses. I was not disabled. I was not chronically ill. I must not be experiencing this spoon phenomenon. I was just a disorganized, chaotic mess of a human who couldn’t get my life together, and now here I was trying to appropriate the language from a group who clearly had it worse than me. And so I went, on and on, beating myself up for recognizing my experience in the words of someone else. [Side note: Please don’t do that to yourself!!! Especially not on my watch. If you ever resonate with anything I write, just know that you’re welcome to it. If it fits, you can feel it. It’s okay. You’re okay.]

At this point, we could go into a long digression on Impostor Syndrome, executive functioning challenges, and why/how spoon theory resonates for autistic individuals, but I’m aiming to keep these posts somewhat bite-sized and spoon-friendly (as in: I only have so much capacity to write per day and I’m not trying to throw myself into burnout). So I will include some links below for all of these topics, and touch on just one more aspect of all of this. Autism and disability. I mentioned earlier that spoon theory is also talked about in the context of disability (not just chronic illness), and then I made a (controversial) offhand remark lumping autism into that category of “disability”. Admittedly, I’m still on the fence about this characterization. From a personal perspective, I am a big believer that being autistic is both my greatest asset and my biggest challenge (I might have accidentally stolen that language from NeuroRebel’s video I linked yesterday, oops!). I’m generally an advocate of the neurodiversity paradigm which characterizes autism (and other neurological differences/conditions) as just that, differences, rather than inherent malfunctions. At the same time: the world is not set up for folks whose brains are like mine, and there is very little mainstream conversation around that. That, in and of itself, can be disabling. Even something as simple as being left-handed in a world that denies, pathologizes, or otherwise tries to “correct” left-handed people (by forcing them to fake being right-handed) could severely impair the left-handed individual, when it’s (hopefully) relatively obvious that there’s nothing inherently better or worse about having one dominant hand over the other. The world is set up to accommodate the needs of neurotypical folks and cater to their strengths--the opposite is true for “the rest of us”. What I’m nodding to here is related to something called the “social model of disability” (as opposed to a medical model of disability) and I will include some links for further reading on that topic as well. To tie this all back together and make it a bit personal before I use up my last spoon set aside for writing for the day: while you may not see it (and most in my life don’t), I am in a constant state of hyper-awareness, tracking of my life down to every last drop of brainpower, and if I misjudge even slightly, I can experience severe consequences (including shutdowns, meltdowns, seizures, flu-like symptoms, burnout, or even just failing to tend to basic bodily needs for the day and the resulting consequences). What looks to the outside like someone being “neurotic” or having an “overreaction” to a change in plan is actually someone who has only exactly the number of spoons required to meet their obligations for the day and literally cannot also handle some spontaneous chit-chat without major neurological consequences.

And no, “taking on less” or “managing your time better to build in a buffer” doesn’t apply when the activities you’ve committed to are part of sustaining the flow of incoming spoons and there isn’t anything left over for a buffer. If you’re relating to this and were beating yourself up about it: Stop, please. You’re doing the best you can with the resources you’ve got access to. If you don’t have anything left to invest in building more resources (or if you are investing and certain other things are falling by the wayside as a result), you’re doing the best you can. You might find that you’ll get a “spoon” back when you stop using it to beat yourself up. :)

Further Reading about Spoon Theory, Disability, and Autism

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