I’ve just had one of my most spectacular meltdowns. As an adult on the spectrum, living independently and being a single parent, many people assume I have gotten past these types of hurdles. Meltdowns, or breakdowns as some people call them, play in the minds of typical people as a behaviour associated with juvenile emotions, inexperience, or simply being overwhelmed. This is because most people lack the knowledge to see meltdowns for what they truly are – a hybrid of an existential crisis, depersonalization/ derealization, and Aporia brought on by Normopathy and extreme empathy.
Normopathy isn’t discussed often being comorbid with Autism, but I think it is a perfect fit because it is a logical state of being for teens and adults on the spectrum following years of deficit focused therapy. A person who is normatic is often obsessed with doing only what is expected by society. It often robs the autistic person of a personality because any individual traits are placed under the microscope in our minds as we compare it with accepted norms. As with any unhealthy obsession, it becomes nearly impossible to accept any small deviation from what we understand as being normal.
In the mind of someone who has Autism, this deviation is seen as breaking rules rather than just merely social norms. The binary way we view societal rules is not because of our innate wiring to do so, but because almost all models of early interventions are binary and rewards based. As we grow older and we fail to receive the reward for our social compliance, we create an even more simplified metric, breaking it down again and again until the two points of how-to-be and how-not-to-be are diametrically opposed with no question of grey area. This is particularly problematic for social skills since societies rarely work this way.
This extreme normopathy leads to a break down, where the normatic person cracks under the pressure and either withdraws or self-harms. In rare cases, a normatic person might try something dangerous like running away, breaking something, or losing control over their body. Let me be clear that with normatic autistic people, violent behaviour is very rare and is never malicious.
Now caught in a loop we can often go into meltdown especially following several normatic pressure breaks. As an adult with autism I have learned to reign in the normatic pressure breaks and keep them from pushing me over the edge. But as we age, Aporia can add an extra razor like edge to this battle of retaining our personalities and trying to fit into societal expectations.
Aporia is best described as that feeling you get when you have just discovered something you believed in wasn’t true, but then still believe it might be true. It is that oscillating feeling between believing myth and seeing truth. Aporia is common in childhood as we come to realize our favourite stuffed bear cannot actually talk to us or that no matter how hard we try, we can never fly with a cape. Though much more rare in adulthood, it is still common for Autistic adults. It is not so much with the battle between myth and truth, but rather in the battle between what we expect people will do and the following interpretation of what they actually do.
This bonding of Normopathy and Aporia is like trying to stand in the shadow of a tree without being able to predict that the time of day moves the shadow. As the shadow moves and changes shape, I must also move and change shape to hide within the bounds of the shadow while holding on to the expectation that time and the tree are static, fixed points. I become so fixated on trying to follow the shadow, I forget I am not a tree.
As the night time falls and I try to sleep, I enter an existential crisis. Does my life have purpose? Why am I not like all the other trees?
The meltdown begins as I feel detached from my body. My mind is now outside my body observing the body move, but with no real connection to those movements. My emotional colour fades to a blurry shade of grey and experiences no longer seem real – like floating around in another person’s dream. Suddenly it feels as if I am vibrating with the emotional energy of every person on the planet, feeling all of their pain and joy at once. It is an immense, bright energy like when a massive star dies, and then collapses into a black hole.
A black hole is not just a hole of nothingness. It is a compact mass in spacetime from which nothing escapes. Once I enter the black hole state of a meltdown, I must capture my thoughts, process them, and then run the gamut of emotions I have not been able to process. This part of the meltdown seems to happen primarily at night when the rest of the humans around me are sleeping and therefore not broadcasting their energies to me.
Now comes the real work.
Capturing my own thoughts outside the bounds of deficit focused rewards therapies and societal expectations is actually rather liberating, but totally immersive. Because I have ignored my inner cogs and weakened my own broadcasting of energy, I form a metaphorical cocoon forcing me to focus on my own transformation.
Though these meltdowns interfere with my ability to properly handle my daily tasks, I find them necessary and critical to my personality development. Much like Dabrowski’s theory of personality development, meltdowns are a “disintegrative” process that is an overall positive process. It allows me to retain true individuality and integrate into society independent of my childhood state which was constrained by biological impulses and uncritical adherence to social convention as taught by those responsible for rearing me.
As teens and adults with Autism, we must experience psychological stress and anxiety in order to grow independent and be who we truly are. No matter how hard therapy and behaviour modifications try, I will always be an alien on this planet. I can never be Neurotypical, nor can I be less Autistic. I an be more independent, stronger, and wiser. My struggles are real, but that is no reason to restrain my inner butterfly.
Back to my recent meltdown.
This meltdown was particularly hard because it was weighted by several large life changes all at once. The heaviest piece was my work as an accidental advocate.
There are two types of advocates – those who become advocates because they feel it is their life mission, and accidental advocates. Accidental advocates are people, like me, who have a diagnosis and were therefore more or less expected to share our experiences. One day I stood up and argued with a presenter about being autistic versus their outside perception of autism and voila, you have an advocate. I don’t mind it and I am certainly not bitter about it, it just wasn’t something I planned to do.
The more I spoke up, the more people listened, and the more I realized I was often the only one with Autism in the room. My voice was among the first to push through the prevailing dialogue that was lead mostly by observers who were not Autistic. I was not only among the first to speak for myself, but among the first to defend the intellect of the non-speaking Autistic community. I constantly faced a barrage of disbelief and resistance as I spoke of presuming competence. Every time I spoke I found I was breaking through barriers and forcing open the doors. I couldn’t stop because I knew it was ultimately the right thing to do for those yet to come.
All of this has come at a great price of never living the benefits of what I fight for. Now, in my 40’s, I am still on mostly uncharted territory of Autistic life beyond therapy, supports, and institutions. I am immensely proud of the outcomes and how younger generations of Autistic people are living better lives. Presuming competence is starting to dominate the autism dialogue forcing even Autism Speaks to change their position – something I never thought I would see.
Though the price is worth it, there are times I am overwhelmingly crushed by the loneliness and isolation of being among the first. In February of 2018 I had begin to break and everything I produced became scrambled like the Enigma Code. Words came out in the wrong order, even in my writings, causing me to have to redact an entire blog post. I found myself constantly distracted, unenergetic, hopeless, and eventually wanting to delete all of my work and disappear.
Drawing a line?
It is hard for me to create a rigid dichotomy between self-care and selfishness. I feel guilty every time I wish for recognition, but it is true I sometimes wish for that especially since recognition often comes with the financial stability I still seek.
But then I realize I am among the first and that is truly the most spectacular place to be an individual. With so few before me, I get to explore the unknown universes of the human experience. I get to take the risks and make the mistakes that can lead to true discovery. No matter how many times I must cocoon, I cherish each of my inner butterflies as they fly out in their figure eight patterns and flaunt their spectacular colours.
I didn’t give it all up. Not this time anyway. As is my true nature, I am fueled by my tenacity. I must admit that I get a special kind of buzz every time I see a post or read an email from a person who feels my work has helped them, but that is not what I seek. The struggle is still very real but I am still an Alien, and that is just fine by me.