Artwork: Gilbert Williams
We can’t talk about integration unless we discuss shedding.
A snake must shed its skin in order to evolve, and so must we all.
So the next portion of my memoir excerpt goes into just that: the identities that we developed over our lifetime of being undiagnosed autistic, the ways in which we felt like we were ‘wrong’ or ‘broken’ or ‘bad.’ Don’t worry, I’ll get to the good, happier stuff eventually. But in order to step fully into an autistic life, we have to honour and let go of where we’ve been - and that is sometimes arduous and deeply challenging.
“Throughout my life I’ve had traits which have chafed against the neurotypical world. Here’s a short list which will be expanded upon in stories throughout this memoir:
Socializing: finding a place where I fit in, misunderstandings and conflicts aplenty (we’re both speaking English, so why is this not computing? Why are we butting heads?) Intuitively knowing that I’m the odd duck, being thoroughly exhausted by talking to / being around others for long periods of time, bouncing from one social group to another growing up, being constantly disappointed in other people’s inability to live in their integrity and honesty.
Managing my emotions: having shutdowns, meltdowns, periods of extreme introversion, abundant irritation and occasional bursts of rage, weepiness, feeling ‘flat,’ not exhibiting the emotions in certain situations that others expect me to.
Executive functioning: either an obsessive need to organize, schedule and juggle responsibilities, or everything being thrown into chaos. And as I burnt out further over the course of my life, skills and abilities to function in this capacity have greatly faltered.
Sensory sensitivities: bright lights, loud (or even persistent) sounds, smells, tastes, textures. The need from a young age to have ‘same foods’ - aka, a strong aversion to foods that are at risk of tasting different each time (such as vegetables) and being a very picky eater. Some sensory issues have become debilitating over time, especially during periods of burnout.
Earth-shattering performance anxiety in academic and work atmospheres - I was never able to talk myself down or ‘get over it’ - so I was never able to hold down a regular job, finish high school, or university.
A home that is ‘just so’ to the point that it causes me a lot of stress to see things out of place or have overnight house guests.
Ruminating for days, weeks and months on nearly everything. Playing conversations over in my head, worrying about things, not being able to shut my brain off to the point where I lose sleep.
Hyperfocus that is so strong, if anyone tries to interrupt me, I’m angry.
Dyslexia, dyscalculia (a learning disability that surrounds math).
A propensity for raw honesty, no matter the cost.
…and so much more. Now that I am diagnosed, I can clearly see that these struggles throughout my life are autistic in nature. But as an undiagnosed autistic person for the majority of my life, I always assumed that these were issues I could work on and ‘fix’ - since ‘fixing’ is such a desirous act in our society - an act that is forced upon autistic people whether we are aware of our neurodivergence or not. I always knew I was different due to these troubles but I always felt that with enough time, effort and dynamism I could figure it out and overcome them - especially when it came to performing - socially, at school, in my relationships and at work. I saw the relative ease with which most other people glided through these aspects of life, with the exception of a few ‘troubled souls’ or ‘bad seeds.’ Conflating myself with those labels was painful - despite the fact that others, even my own family by the time I was a late teen, had begun lumping me into this unpleasant conjecture. I personally saw myself as damaged - not broken beyond repair - more like living about 30 degrees to the left.
I had to hold out hope that I wasn’t all the way broken, that I could course-correct - that these things would someday improve with enough sheer will and brute force. You see, the pain of having something so formless and murky ‘wrong’ with you is like a tiny ax that slowly hacks away at the trunk of your confidence and your sense of selfhood. You feel as though you are slowly being consumed by a shadow that no one else is aware of, even though they are sitting right next to you. You are constantly wondering, “Why is this so hard for me and not them?” and of course that eventually translates to, “What is wrong with me?” And when the dagger has turned that far inward, space for gentleness and patience has long become obsolete in the fight to just be fucking normal.
If we have good educators and caregivers from a young age we are, generally speaking, taught to embrace otherness and differences. To celebrate them, even. But when these differences are relatively minute on the surface (meaning the child has developed the ability to mask), yet these differences have such distinctly vast and profound roots which are invisible, you have a situation that is rife with unique challenges. There is a saying, ‘this is just the tip of the iceberg’ - and that is because icebergs are far, far bulkier beneath the surface than what is seen above. You could have 100 nearly identical icebergs floating in the ocean and 10 of them are ‘different’ - with an absolutely massive underwater bulk, much larger than the other 90 - but you wouldn’t know unless you took a deep dive. It is the same with autism in school, the workplace and other social realms. Unless these different parts are visible and very obvious, or unless we know what to look for, we’re not going to do much, or anything, about it. We may not even realize there’s anything to embrace, celebrate or support because we might not see otherness. In the admirable desire that some individuals and institutions employ to transcend otherness and embrace differences, we often inadvertently do harm. We miss the internal struggles and ways in which we can make life easier for those who suffer beneath the surface - especially children, who do not have a well-developed self-advocacy voice.
Here is a graphic I made that visually demonstrates the iceberg metaphor.
Because the struggle is relatively invisible to caregivers and teachers alike, this struggle inevitably turns inward and downward, into the underwater ice formations that no one sees. And even in the ways that we do visibly struggle, be it with socializing, learning disabilities, sensory issues etc - we often do not fall into the category of ‘different enough’ to warrant extra, or special, attention. So if our external environment makes us inappreciable, and our problems intangible, there’s nowhere else for the energy to go but towards, “What’s wrong with me?” But this question may be quietly tucked in amongst all of the other burgeoning, organic questions which percolate at different stages of life as one grows up. I mean, it’s not as if neurotypical kids aren’t without self-query, self-consciousness, and wondering if they are weird. Of course it’s common. But for us autistics, there’s an extra layer to it - a growing, snowballing, deep intuition that we’re highly unusual. And this nagging feeling may compete for attention but be shoved, time and again, to the background out of necessity, and shame. The question itself may not be loud enough to justify asking for help - because of the aforementioned obtuse societal and cultural lens upon our neurotype, and the particular characteristics that comprise it. We may not even know where to begin, even if we did ring an alarm bell. Would we shout, “Help me! I’m weird! There’s something wrong but I don’t know what!?” More often than not, it feels like crying wolf.
Coupled with our society’s desire to fix what we perceive to be broken, we turn the blame inward and seek to repair the aspects of ourselves that we feel are wrong, the ways in which we struggle but others do not, and the rifts in relationships that often seem to crop up despite our best efforts.
Had I known how futile much of this mission to fix myself would prove to be, I would have stopped long ago. Of course, regardless of neurotype, seeking to ‘fix’ is folly, and ultimately just plain damaging. And of course, regardless of neurotype, we all have things about ourselves that we may not like, or wish weren’t there. But what it seems to come down to for us autistics is a matter of being hardwired in certain ways that we can do little to nothing about, much to our perpetual chagrin. The fixing and improving I wanted to do, say, in regards to being able to work a regular 9-5 job (or even a part time job for that matter) with any level of social pressure, was just never going to happen. I held approximately 25-30 jobs from ages 19-32 - always with a similar hope that maybe this is the job that I can handle holding onto. Oh, not that one? Ok, the next for sure. Not that one, either? Maybe the gallery assistant position. Maybe the small clothing store. Maybe the health food store. Maybe the warehouse worker. The dishwasher. Barista. Mural supervisor. Foreign furniture salesperson. On and on.
I felt I had to keep beating my head against that wall because I saw people on the other side of this invisible barrier doing it with relative ease, finding a groove, even if that groove was a little stressful or mind-numbing. My anxiety would always be a 9.9 out of 10, regardless of the day, time, or job I was doing, which I know wasn’t the case for other people I worked for, or with. In case it isn’t obvious, that level of anxiety is untenable. This debilitating fear and tension made it so I could never retain the information on how to perform the job correctly. I’d freeze in every situation with customers, anytime I had to handle money, and I wouldn’t come down from 9.9 until bedtime that night. Often the only thing that would unwind my frayed nerves after a day at work was alcohol, which I was abusing to numb my sensory issues in social situations. I also embarked upon more tried and true methods: anti-anxiety medication, cognitive behavioural therapy, and, as mentioned, a wide variety of jobs to see if something would click. Nothing ever did. To have a ‘regular job’ feel so absolutely harrowing was vexing and alienating to say the least. People in my life did not understand my struggles and thought I must have been faking or exaggerating them in order to get out of the responsibility. All of that couldn’t have been further from the truth. As the person in the provider role for my loved ones over the last several years whilst running my own business, I have nothing but joy for the stability and generosity that this position affords me. It turns out that I revel in responsibility, it just needs to be self-governed or else my anxiety is altogether too much to bear.
And the same goes for many of my other challenges - that perhaps there’s only so much wiggle room for change, but the rest is hardwired. It is both liberating and frightening to learn this information, because on one hand, it cannot be changed and so therefore it is perhaps easier to accept, but on the other hand - it cannot be changed, so there is a sense of being out of control, limited, stagnant and caged. This is precisely why it has taken this long to understand the extent of my autism and just how far and deeply it reaches. It isn’t as though you receive big news one day, and all of the pieces fall immediately into place. No - it cascades, it titrates, it happens in awkward, often painful, realms of expansion and retraction. The stages of grief, in no particular order, come and go like tsunamis. Notions of identity don’t just fall away - especially those that you’ve had to hold onto for survival’s sake, such as fawning when someone treats you badly or desperately trying to fix parts of yourself that don’t jive with societal and social norms. I mean, it all boils down to survival.”
~ excerpt from my memoir’s first draft.
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Until next time, love and wolves.
D xx
Thank you for sharing your story. I know it can be exhausting to write the reliving of your experience. What a beautiful thing that you’ve found a way to express what was hidden under the surface of that iceberg for so long 🩷 and I see in your wisdom too that you’ve learned to prioritize doing it sustainably.