A Diagnosis That Saved My Life
While I’ve been chronicling openly the narrative account of the vicissitudes of my Recovery Journey from eating disorder here, something else, of great consequence, was in the wind.
It is arguably, the singularly most significant turn of events to have ever betided me.
I’ve been meaning to share it in this cyberspace, for a long while now.
But I had to turn it in my mind for a space, and examine all the angles. Peruse this newly acquired discovery with rigorous care. Comprehensively. Pursue the veins of this aforementioned momentous insight in-depth.
I had to study it. Understand it.
To get it discretely defined in my head.
But above all, I had to accept it.
Because what I’m about to relate, a diagnosis I received back in November of last year, had changed my life.
It turned my world bottom-side up and shook me to my very core.
It gave me the key code for unraveling the puzzle of my own brain.
It explained EVERYTHING.
To my family. To My close ones. To the clinicians who have been and are working with me.
But most importantly, it provided me a relief from a lifetime of strife, and self-hate, and allowed me to begin healing.
Finally, for the first time in my life, I began giving myself compassion and grace.
I started seeing myself through a different lens.
Notwithstanding this diagnosis, treatment would have meant absolutely nothing.
This had not only changed my life. It had SAVED my life.
It was the difference between a caged spirit to emancipation. Between feeling like a broken human, to self-love.
I will delve into the specifics in another post, but I felt the need to put this out there, as this entwines closely with my Recovery Journey. My entire life experience stems from it, and it cannot be separated.
The long and the short of it is that I was diagnosed as being Twice Exceptional (2e), more specifically- gifted with Autism Spectrum Disorder.
A two-part diagnosis, with the latter taking place first.
The various clinicians who worked with me for many months now, have enabled me to understand it. They provided erudition about recent studies and have helped me come to terms with it, and embrace it.
I learned that autism presents very differently in women, than in men.
There is a wealth of new information and research surfacing regarding autism in “high-functioning” women, even over the past year alone.
ASD is a wide SPECTRUM, and having autism, means you can fall anywhere on this rainbow.
“One of the first things you related to me, three years ago, when we started our sessions,” Keren, my trusted therapist, my mentor and confidant, had recalled, “was that you didn’t feel normal.”
She pursued, “I remember telling you, ‘everyone feels this way’.”
I distinctly recollect, how my heart sank at that time, when she observed that to me.
But really, it was the old familiar feeling, I was already habituated with.
The wonted “I must not be working hard enough.”
The accustomed “I am simply a… defected product.”
If everyone feels this way. If everyone deals with the same hardships. If everyone encounters the same challenges, then why do I react to things so differently?
Why do I get flooded so easily?
Why can’t I cope the way others do?
Everything has always been just… more. It seemed that I experienced Life with much profound intensity.
As if the volume on EVERYTHING is turned up, all the time.
Everything is supersized. Amplified. Augmented.
The conclusion that naturally sprang from this, was related to me over the years with such terrible authority, by a dark and malign voice.
It was a shadow that had learned to increase and swell, as the years wore on- over the seasons of a Lifetime. And it grew so black until my sky was nothing but ashen overcast, and it had taken lasting root inside my heart.
If everyone feels this way, if everyone faces the same difficulties, and I can’t handle them like everyone else-
“A terrible answer presented itself”:
THEN SOMETHING MUST BE WRONG WITH ME.
And the rest followed. The cogitations marched on with perverse persistence, bent on this horrid channel. The cherries on top: I must be lazy. Maybe I’m just a complainer. Selfish.
I am too much for the world.
I am just broken.
A broken version of a human being.
I didn’t understand why it’s ALL so overwhelming to me. Why can’t I just, “get it.” I mean, everyone encounters the same exact Hard. But they, well, deal with it.
Why couldn’t I just… “deal with it”?
And I hated myself for THEM. For EVERYONE.
I hated myself so much. That I was willing to rid myself for the world.
Anorexia played key role in surviving life for me. Really, I should give her a whole lot more credit and treat her a bit less severely. She has been a frontrunner coping mechanism, that was extraordinary in dialing things down for me by palliating that spate river of emotions that were simply too big to contain, so big that I sometimes feel as though I may burst my bonds with feelings, like a scarecrow popping its straw, quieting the caterwaul of thoughts zooming down that highway right under my window night and day, tempering the eternal hodgepodge in my brain, and curtailing the sentiment of always feeling too much, by helping me be/feel less.
Under the aegis of Anorexia- it was a dragging and torturous process of a very slow death- I almost, succeeded.
But it was after I received this pivotal diagnosis that I was able to begin to undergo the most dimensional change, and begin to find peace.
A few weeks ago a tornado touched ground somewhere close by.
The kids and I sat outside and watched the drama enacted with febrile excitement; there is something powerful and menacingly beautiful about storms.
But when my mobile telephone vociferated the tornado warning alert message abruptly, I presently packed up the gang, kids and animals and Switch and all, and headed into the basement bathroom.
Mother Nature gave vent to the most spectacular storm, and the air was rent with unchecked chaos: peal of thunder and winds that threw trundling, ill-boding clouds helter-skelter in all directions, and within minutes the countenance of the sky assumed grave, solemn black, spanning the whole of the empyrean dome.
The tempest cast its wrath upon All at full stretch.
Then, it left as it had come.
In one magic moment the world had undergone complete metamorphosis.
That magic moment, when the sun pierced the gray, and the sky had all too suddenly lit up, sober and crisp, was what the diagnosis had done for me.
Like the peeling of onion layers, it allowed me to begin divesting myself of the stratas of shame and self-hatred that exteriored me, my entire life.
It’s what afforded me a first taste of freedom, and it was the catalyst for the onset of a powerful and exhilarating process of rediscovering life, that warranted a move in a trajectory of thriving.
It gave me my identity.
For the first time in my life, I finally began to understand who I really am. What I’m made of. It decoded the big riddle for me: it elucidated the ever elusive Why.
“Now we know you are not ‘normal’.” Keren had observed to me, after I received my diagnosis 10 months ago.
Whatever normal really means.
I learned, I was simply a… different variety of normal.
With her astute observations and innate perception, she had recognized in me things that were not even on the scope of my reality.
She had driven me to the edge of thought, prompted me to seek answers, and attain that diagnosis, that had parted the clouds for me, and, plain and simple, changed my life.
Prior to that, during our sessions I would describe to her things that were MY, for all intents and purpose, normal. My matter of course. But had presented constant challenges throughout my life.
I never thought anything of it. It was nothing but my personal experience. It was just… my life. My usual, private travails. It was simply, how I… was (insert shrug emoji).
The rigidity, resistance to change, thinking in the black and whites, the inelasticity in cognitive patterns of thinking, my seeming ‘OCD-like’ habits, intolerance to uncertainty, and the need to adhere to rules with which I process the world, encompasses my entire life experience.
In our session I would bring my inability in tuning-out distractions through the interminable barrage of stimuli that always affronts my brain- my mind intakes a mortally vast amount of information from the environment all at once, all the time- and I have difficulty recognizing what is central; those salient things that I should be tending to at any given moment.
I often struggle to tell what is essential, and what is just trivia and eschew the lesser; everything is simply same level of important, and I find myself lost, drowning, completely unable to focus, flailing around like a fish out of water, a drowning person trying to clutch at straws, conveyed involuntarily by the endless rush of the River, with the eternal feeling that nothing is ever thoroughly concluded.
Thus shunting off interferences becomes an exhausting challenge.
My brain favors details, and time to process them- too much info too fast, and my computer simply shuts down.
I am left beset, most of the time, by an enfilade of stimuli and a whole lot of input pommeling my brain, and the incessant whirring of the gears in the creative mind, threatening to drown out everything else with their urgent call to action.
My head is suffused, ad nauseam, with endless deliberations and rabbit-holeing into matters, introspections and analyzations, and constant attempts to understand.
It essays to identify systems. Codes to follow.
And it was my differences in sensory processing- the overwhelming hypersensitivity to sounds, lights, and smells.
I feel like an exposed nerve, most of the time.
The struggles in reading people’s intentions and deciphering the vagaries of their behaviors. The augmented sense of overwhelm by any vis-à-vis with another human.
My difficulty in maintaining eye contact, mimicking of facial expressions, mannerisms and hand gestures.
The attention to details, and pattern recognition.
Keren had pointed out my rigidity and inflexibility in ways of thinking, the inherent need in routines, rules, schedules; there is a specific sequence to things, and any ad lib revision is always challenging.
I cannot tolerate the unknown.
That said, I bore easily and consistently seek novelty, new learnings, content, interest. I have a visceral, pressing need to find meaning, material conversations and intellectual stimulation, and the tedious victual runs, the errands and the birthday parties and the insipid small talks (CRINGE) and the pedestrian sameness of the Everyday, the humdrum rhythm of all things Life, can drag me down so low, to the point of wanting to throw in the towel on life.
The unremitting demands of my brain to create, impels me onward with a sort of unrelenting exigency and inexhaustible hunger that I can never suppress.
Creativity for me, is a covetous beast who’s insatiable appetite and unquenchable thirst endlessly essays to hold court.
It doesn’t give two sticks that its person has two beautiful little beings that it wants and needs to care for. A crave for human connection- all things that entail expansive time expenditures. Yet petulantly, selfishly, it bids for a sole proprietorship of my time, and seeks my undivided attention.
It feels like my brain is always miles ahead while my body slow-moes at turtle speed somewhere behind; there is a big gap between what my brain WANTS to do, and the reality of time constraints, and the ability and availability of the human body.
And I feel alone.
I always felt so, terribly lost.
I require explicitness. Clarity. Definitions. Conciseness. Consistency. Preciseness.
But life is fluid, it is unchangingly, ever changing, which in turn only contributes to more confusion.
Keren had indicated my repetitiveness; my de trop, effusive style, my tendency to turn voluble: I expound on matters at length. Ron used to call it circular conversations.
I can’t do the mind-numbing, idle, banter-type confabulations that are emblematic of most people-facing situations.
I always found that it was easier to have a single-person connection rather than multitude relationships, or large group conventions, for all these reasons.
I am vastly literal and for the most part, sarcasm just flies over my head.
I always envied those who can come up with stuff on the spot. This wizardry improv of unscripted pleasantries. Just… whip up a witty quip from their hat. Somehow, they just know what to say.
The magic of the art of badinage had eluded me.
“How do they do that?” I’d always marvel. I do ok with writing, but I need time to think, and formulate my sentences. My confidence had been quite shattered for this very reason, for a good chunk of my life.
For most of my young years, I’d often feel stuck during many a interlocutions, lodged in the mire like a solitary rock. Whenever the spotlight was on me, all too aware of my own facial expressions, my body, my hands, I’d frantically cast for words. Worst case, I’d be turning mute. A taciturn git. Best case, I’d eventually be expectorating some addlepated response, feeling like an utter cretin.
To say that I always felt like an alien in the world, would not be a hyperbole.
I perceived myself to be a lumbering thing, awkward, embarrassing, terribly gauche and graceless.
A foreigner in a body in which I never felt at home; a 80/20 ground beef stuffed into plastic packaging; a concept trussed-up in a meat suit. A golem. A feigned humanoid endowed with life, operating my body like a puppeteer manipulating a puppet.
A key attempting to fit into the wrong lock.
“I don’t feel human.” I’d tell her. “It’s as though I am acting out being one. An an entire life of being on stage.”
My emotions are BIG, and the volume on all things Life, is turned up a notch, all the time.
I experience everything with a grave intensity.
For a year and half Keren had brought up her suspicion that I was autistic.
But I simply whitewashed this proposition whenever it was put forward for consideration.
It was 10 months ago, though, that I finally received the diagnosis that had corroborated what my therapist had suspected all along.
I am autistic.
A more recent diagnosis had fine-tuned it for me, and had taken the explanation to another level of Aha.
It is the apologia for a narrative of struggle spanning an entire lifetime: turns out, I am Twice exceptional, ie autistic gifted.
Which could account for, as I had been explained, some of the masking of my autistic traits:
“Many adults are not identified as kids because they are twice-exceptional (2E) and their gifts help overshadow the challenges.”
None of these concepts were ever part of the vernacular I was accustomed to, and certainly not the argot with which I explained myself to myself.
It permitted for the harsh, potent terms I had used in my, quite horrifying, honestly, self-talk, to dissolve. It allowed to let slip the cloak of the rigid expectations of myself to the ground.
After a lifetime, grace finally, found me.
It gave me the wherewithal to explore the aspects of my mind in greater detail, under a new light and a newfound, gentle awareness and kindly understanding.
It was then, when my very personal paradigm shift, undertook its capital start.
When Keren had first proposed the matter of autism with me, I did a double take.
I mean… AUTISM?… wait… WHAT?
I brushed it off.
Like so many, I had the misinformed, misconception of what autism is like. And it took me a beat to process this.
Many rely on a smattering of information and very limited exposure and experience, to the fact that autism is a rainbow.
Although there may be an underlying confluence of connecting, shared traits under the bedrock- that subterranean river that is autism, is fed by a constellation of tributaries- the scope of the various abilities and challenges that individuals on the spectrum possess is markedly vast. It is an expansive kaleidoscope of diverse and varied experiences.
And it is a multifarious expression of conspicuous AND inconspicuous characteristics.
There is an abysmal gap to bridge between the prescribed notion of what autism is, and what autism is.
Because the lack of knowledge, is almost an adversity.
Someone related to me lately, “I thought autistics have no empathy. That they don’t have emotions.”
I was scandalized.
Could you repeat that?
I was stupefied for a hot moment. Rendered speechless, I found myself at a profound loss for words.
Am I in the correct century?
I am certain sure space exploration has already been initiated? (Insert a thinking face emoji).
Not only do we have the capacity to feel empathy, research shows that in many cases, as autism entails greater amount of brain receptors to process information, this renders every experience amplified- many autistics actually feel in greater depth and intensity.
“They don’t make eye contact. They don’t LOOK autistic. They cannot be autistic if they are able to hold a conversation”- is an anachronistic supposition.
I am learning that untold individuals on the spectrum live with shame/embarrassment.
A friend recently related to me that she had shut down long ago and never divulged her autism diagnosis (I didn’t even know), after she had gotten the quintessential UNADVISED reactions of- “really? You don’t LOOK autistic…”
So, there is certainly a long way, until there is more understanding and acceptance in the NT world, surrounding autism in women and in general, to help us feel that we can come out of the woodwork and just, be ourselves.
From my personal experience, and many, many conversations with peers and clinicians alike, there should be more options tailored specifically for neurodivergents in the world of Eating Disorders, as treatment for individuals on the spectrum must be gravely different.
A staggering 20% of female population with Anorexia Nervosa is on the spectrum.
Lack of knowledge and inadequate training leads to an inability to differentiate between an ED behavior, and an expression of an autistic trait- verily, they look very similar at times.
But the root cause of the behavior, is what matters.
The pathological “you need to do this because this is normal”.
Or “you need to practice flexibility”, exempli gratia, was a popular proverb amongst the clinicians in treatment. Trying to push it on someone that is not capable to, just, “practice flexibility”, can leave both the clinician and the client exceedingly flustered.
Most places go by the cardinal law “it’s my way or the highway”, blanket prescription for treatment, kinda deal, and if one does not fit the mold, well, hey, the door is right there.
Furthermore, the attempt to live by the tenets of the regular order of things, ever essaying to conform and assimilate into ill-fitting vessels, to checkmark those ticky-boxes, to fit into the wrong keyholes, can have a deleterious effect.
But of those who live in the fringes of what society deems the conventionally considered Accepted, the “normal world”, very few and far between, ever broadcast their experiences and divulge their inner struggles.
There is more room for clinicians to learn from the actual lived-experience of those on the spectrum/2e, because these are the real life teachers.
No textbook in the world can convey this, far-superior knowledge.
In addition, I have been taken unawares on a few occasions, at how even autistic people, despite of themselves, sometimes are unable to recognize their own autistic traits.
“I always liked to arrange my skittles by colors and numbers.” A friend related to me. “Anything circular, I’d have to eat evenly all around.” She went on to observe to me, “as I was talking to you it had dawned on me suddenly, that it had never occurred to me that it was simply a part of my autism.”
Another friend, a woman who’s two sons are on the spectrum, had written me to express gratitude for sharing my experience with her:
“when I hung up with you I went to give my 6 year old (high functioning son on the spectrum) lunch. My father was in the kitchen cooking stuffed red peppers, a very strong Italian food smell of course.
My son (Loghan) said “eww, what is that smell, make it go away” referring to my fathers food. (Loghan was just eating plain noodles, lol)
Loghan has complained of smells for a couple of years now, especially food. (Extremely picky eater)
I’ve lived with my children on the spectrum for years, always understood the lights and the sounds being too much, but for some reason the smell thing with Loghan didn’t sink in, I just thought he was being a typical kid.
Then it clicked with me, you mentioned during our conversation today how smells bother you and how exposure to “sensory overload “ (for lack of a better term) was not a helpful approach for you.
I felt so guilty because most of this time, rather than really listening to Loghan, we’ve been making him stay at the table regardless of smells, or kind of minimizing it and saying he was just being overly dramatic.
So today, after speaking with you, I tried to validate him, let him know I understood and took him to another room to eat.
Idk if I handled it the best way or not, I am curious how you would want to be approached in that situation as a kid with sensory issues?
Thank you for opening my eyes to this, I honestly don’t know why I never associated “bad smells” with autism…?
My oldest son has always ENJOYED certain smells, for example, when I wash my hair he will follow me around all morning touching and smelling my hair because he likes the conditioner I use, lol.
I will certainly be more aware and sensitive to Loghan’s issues regarding smells from now on.”
We all need to speak.
Share our stories.
Connect to one another, relate our experiences.
Neurotypical or neurodivergent, Life deals us all similar cards.
We all deal with with SOMETHING.
But so many of us live in a state of constant, distressful dissimulation, feeling the need to bury it all under the surface. To counterfeit an even-keel everything-is-fine patina.
Perhaps we are too embarrassed to share. Or perhaps pride comes in the way.
Perhaps we feel that others’ parable is more important, more significant, and that we are simply… some irrelevant incidentals.
That our own troubles are merely applesauce.
Others have it harder. Who am I to stand up and raise my voice, when someone else is REALLY struggling.
Well, we can all learn from each other.
Because ALL OF US have a tale to tell. We all have a story to narrate.
We are all scribes of the Human Story.
We, ALL, MATTER.
We must open our hearts and LISTEN, judgment-free.
And we need to get comfortable in our skin.
Because really, there is no normal.
And there is no abnormal.
Each brain simply stems from a different expression of the human genome.
We ought to learn to accept that we are all soberly, refreshingly, distinctly dissimilar.
I will post here an article that goes into more detail about my own lived-experience with the challenges of being gifted/autistic at a later time.
But in the interim, I’d like to end by saying that I have begun to fully embrace my autism. The challenges. The gifts. The whole package.
I am no longer embarrassed to be wearing my sunglasses/earmuffs in public, to make a grocery trip a bit easier.
I am allowing myself to be more choosey with the events I engage in, as crowds and social meetings leave me drained to the core, and often times with a screaming headache.
Human beings have always been an “abstruse cryptogram” for me. A Question Block, Super Mario Bros style. Their logic eludes me. They do things apropos of nothing. They are capricious like Autumn winds, and unpredictable like squirrels.
That is why I favor words. They are simple. Precise. Direct.
Words are what words are.
The changing dynamics of human relationships is probably the hardest things for me to take on.
I rebroadcast conversations and scan their content in attempt to interpret and analyze them with, for obvious reasons, never a clear-cut, satisfactory answer. I may glean a whisper of understanding; and in the end, I am left always wondering.
The world can be a recondite puzzle for me at times, and things get lost on me often; I may find it hard to read a situation and can’t always understand the intentions behind people’s actions. Ofttimes I’d have to drum up help from Ron who would act as my interpreter, when I get lost in the ambages of all things Human; and so I began giving myself the permission to ask more questions, and seek additional clarification, whereas prior, I’d be too embarrassed to ask, from fear of appearing “stupid” (I was depicted by that colorful nomenclature in the past).
I am beginning to stim more openly.
I am showing up more authentically, unapologetically, me.
None of us are broken.
We are all beautifully, perfectly, imperfectly Different. A different variety of “Humen”.
Let’s celebrate this human diversity, and feel free to be ourselves, together.
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