Dear Neurodiverse Community: No One Is Coming To Help; We Have to Do This Ourselves
We have to build our own community in order to thrive
Viktor Frankl said “Meaning isn’t given, it must be found.” Frankl, an Existentialist, believed the way out of suffering was to go through it; find your higher purpose and to teach it to others. Frankl, clearly influenced by the Stoics as well as Dostoevsky and Nietzsche, concretized the concept of finding purpose and destiny by creating Logos Therapy.
Frankl believed that in order to find your higher purpose it is something created organically and will be different and highly personalized to each individual based on a variety of factors. It should be borne from a place of love and be something bigger than just you. He believed when it came to leaving a legacy, the things you’ve done cannot be undone, so choose wisely and with a pure intent.
My therapist recommended I read Frankl’s autobiographical work, Man’s Search for Meaning about his time in Auschwitz and how he rebuilt his life after being freed by the allies. Like many, it had a profound impact on me. Still carrying the deep grief from too many invalidating and abusive life experiences, our work focused on helping me find my own way out of the labyrinth of pain and learn how to separate the wheat from the chaff; recognizing the things for which gratitude should be bestowed, while discarding the things that no longer served me well. This blog is part of that journey and it was with her strong encouragement that I created it.
This is my higher purpose; to share my AuDHD journey and record my impressions and take aways. What I’ve always called ‘I didn’t have any other choice’ is actually resilience and is a fundamental part of the growth mindset school of thought and important to building a life worth living.
In my real life, I am a personal coach that works with high functioning adults on the spectrum helping them find their way out of the fog and to teach them useful skills to find their unique path, hopefully towards a life of fulfillment. A therapist helps you process the trauma and discover parts of yourself you don’t understand, a coach teaches you the concrete skills you need to thrive.
The first thing I do with my clients is figure out their personal stuck points. I keep seeing the same issues on repeat and have come to the conclusion that neurodiversity needs to hire a new marketing director because right now, our branding is floating in the same place as Skibidi toilet. As a population, we have become our own worst enemy and it’s time for a major reset by reframing what neurodiversity actually is versus how it’s currently portrayed. That’s not just my opinion, that’s me having talked to many, many people and seeing the same patterns over and over again with my job to help them successfully find a way through. I started coaching after seeing the progress I was making with my children and wanted to be a part of the paradigm shift neurodiverse thinkers desperately need to make and move us out of the stone age of predetermined beliefs that aren’t just inaccurate, but also harming us by self-limiting our potential.
Like many adults diagnosed late in life like myself, we review our lives through this new lens and while things may finally make sense, it doesn’t erase the trauma. Dostoevsky said that “Suffering is a mystery that may not be cosmically resolved.” He believed embracing pain as a part of the fabric of one’s life and by honoring it, transformed it from pain to utility.
After my children were diagnosed I was hopeful because there is so much more awareness than when I was their age. Instead, I realized it is not like that at all. Like Alice waking up in Wonderland, I’ve experienced nothing but surreality ever since tumbling into the neurodiverse rabbit hole. I feel like I have been handed a knotted ball of yarn entrusted with the job to disentangle it.
The biggest weakness that I see is a toddler like willfulness to avoid pushing through the discomfort of emotional dysregulation. There are million ways to say “No” to something and only one way to say “Yes”. I’ve seen distortions and pretzel logic that are the neurodiverse equivalent of E=MC² when it comes to avoidance and personal accountability. E is equal to the amount of energy it takes to avoid as in ‘every mental reserve they have’, while M is equal to, ‘it’s always someone else’s fault’ and C squared is the speed at which it will take before willingly embracing the discomfort and learning better coping skills, otherwise known as glacial. This is where we need to start if we’re going to make any progress not just as individuals but as a community. For all the awareness and support services that are part of the current neurodiverse landscape we are failing and this harsh reality needs to be said out loud so those in the back can hear it:
No one is coming to help; we’re stranded on our own island and have to rebuild from the ground up with tools we have on hand.
There are four types of resiliency: physical, mental, emotional, and social. Resiliency is essential in helping us form our identities and should be a cornerstone. Avoiding emotions and lacking the self-acceptance of needing to learn these skills are the most commonly seen impediments I’ve come across and the older you are when you learn it, the harder it is to learn because the maladaptive coping mechanisms are deeply ingrained and you need to unlearn those first before learning more pro-social coping ones. It’s not an impossible task; it just requires a more disciplined approach.
As parents, it’s only natural to want to protect our children from life’s pains and frustrations but we can’t cosset them to the point where it impedes social development and in the case of neurodiversity, acquisition of certain skills requires a different scaffolding than it does for the allistic community. When children are young we should be engaging in controlled dysregulation which is to hold space for the emotional discomfort similar to how exposure therapy works by building a tolerance a little bit at a time until one feels confident in being able to self-regulate when confronted with distress. We are stunting our children’s development of empathy whenever we swoop in asking for an accommodation the minute we see distress instead of allowing it to be an opportunity to build resilience. Resilience is how empathy is learned. The three major levels of empathy are cognitive empathy, emotional empathy, and compassionate empathy. Autistics struggle mostly with cognitive empathy which requires more metacognition than emotional or compassionate empathy.
In the movie An Officer and A Gentleman, Richard Gere’s character Zach Mayo has a grit your teeth and survive type of resiliency but low empathy. Many autists live similarly, having to mask heavily and living in a constant state of hyper-vigilance. The frontal lobe is not processing anything other than flight/fight/freeze/fawn so there is no bandwidth for emotional growth.
In the movie, Gere’s redemptive arc is his transformation from solipsistic to acquiring empathy by building a tolerance to the discomfort of feeling vulnerable in the presence of others. Metaphorically, his character like many autists do, cops the attitude that so long as his needs were met, all is good and empathy is unnecessary for success in life. Louis Gosset Jr.’s brilliant portrayal as St. Foley butts heads with Mayo from the beginning with Mayo trying to control the narrative and Foley holding firm on the boundary of the acceptable rules for social conduct, forcing Mayo to choose what kind of person he ultimately wants to be.
Slowly, Zach begins to bond with his classmates. One classmate Zach forms a bond with is Casey Seeger, played by the always excellent Lisa Eilbacher who struggles with some of the athletic requirements. The movie comes to a pivotal point showing us Zach’s metamorphosis has begun as he and Casey are running the mandatory obstacle course necessary for graduation. It is Casey’s final chance and Zach’s last opportunity to beat the all time company record. Zach and Casey set out together and Zach is on time to beat the record when they come upon Casey’s obstacle - a giant climbing wall. Casey struggles while Zach continues on. Pausing and ultimately deciding to forfeit the record, he returns to lead her to “Walk that wall” with the rest of the team cheering her on as she finally conquers this last obstruction to fulfilling her goal of becoming an officer.
This is what we have to do within our own community; we need to walk our own wall by leading and offering a hand up to those still struggling to get over it. We have to; because no one else is coming.
Too many of us who can do better aren’t because the support community doesn’t truly understand us and our needs so we are left in this hyper-vigilant state of masking, leaving us exhausted and with little bandwidth for anything beyond prioritizing our own needs above everything else. We struggle with all our relationships - work, family, friends, partners, children. Too many of us only have the resiliency to survive, not thrive, and we need to start building up our resiliency stores to open more doors for us. Empathy is our ticket towards building better, more secure relationships and confidence within ourselves.
The Japanese call the idea of the tension created by self-acceptance and the desire for change ‘arugamama‘, or a state of unconditional acceptance. It requires not just self-acceptance but also being honest about one’s flaws and this is an area where neurodiverse thinkers struggle the most. But struggle does not mean it can’t be done. Too many times I’ve seen people just simply stop at, “Oh, that’s hard” and shut down, so I ask, what is the alternative? Sit in a ball on the floor, rocking back and forth? Ok, for how long? Then what? Lather rinse and repeat? What exactly is the end game here? Somewhere along the way, discomfort without accountability has become skewed and re-defined as “I need to be accommodated”, seemingly equating acquiescing to a neurotypical standard of behavior a heresy and betrayal of the neurodiverse community.
THE WORLD DOES NOT OWE ANYONE UNCONDITIONAL ACCOMMODATION.
A paradigm shift is desperately needed within the neurodiverse community. The world does not revolve around you and your needs solely and if you lack certain skills you need to learn them if you hope to flourish. Otherwise, sit down and stop complaining and realize you’re making a choice, yes, a choice, of learned helplessness. I find this especially egregious and disappointing among those who have much privilege. I thought we were evolving past the “I got mine, figure it out for yourself” mentality. With privilege comes responsibility. Responsibility does not just mean volunteering time or donating to charity, responsibility also means being responsible for yourself and doing everything in your power to be the best self you can be and if that means accepting that you need support in a certain area then do it. No excuses.
It’s not just about therapy, special schools and experiences; it’s about making a mental commitment to yourself and doing the work no matter how hard or uncomfortable it is. That is humbling; that is necessary and what builds character.
Others who do not have these possibilities available are depending on us because no one is coming for them either. Are they not as deserving of opportunity just as much as the next person? Instead, we make excuses, pass the buck; kick the can of responsibility down the road and say, “Well no one did it for me and I figured it out”. Actually, no you didn’t. I’m not living in a bubble; I’m out there on social media, I’m talking to therapists, I’m talking to others in the community and only a handful are actually figuring it out, the rest are leaning into their neurodiversity as a crutch to avoid the responsibility of summoning resiliency and learning the necessary social skills, expecting everyone to accommodate them like Moses parting the Red Sea. You’re not just short changing yourself, you’re short changing the community too.
It’s time to knock that chip off our collective shoulders and rise up, embodying a positive, elevated perspective of what being neurodiverse is actually like.
Oxford defines community as a feeling of fellowship with others, as a result of sharing common attitudes, interests, and goals. There is a lot of diversity within the neurodiverse community because it is a spectrum so who better to offer fellowship than ourselves? Who better to create a better understanding of our needs than us, those who are living it? But it can’t come with the baggage of an us against them attitude. We need to vanquish the ‘normies’ versus the aspies mindset and instead approach from a place of commitment and dedication to the goal of being good role models. We need to be a part of the solution and representative of a higher purpose that extends beyond just our own interests. If someone can explain to me how the large number in the neurodiverse community saying “I can’t” and avoiding the discomfort of even the slightest bit of stress isn’t just failing ourselves but also failing our children and future generations, I’m all ears.
I’ve heard too much mewling within the autistic community, a community I too am a part of, about what they can’t do. I hear lots of excuses, but never any good reasons. What I want to know is what they can do that doesn’t involve an answer like, “Hide.” I want to know what ideas they bring to the collective to benefit the collective. I know this is a struggle as the word autism derives from the greek word ‘auto’ that means self and our baseline tends to see the world through a more myopic view finder, but struggle does not equate to can’t be done. It means being self-aware and diligently building mental resiliency towards rewiring those responses. Science has shown time and time again how the brain has neuroplasticity throughout one’s life so you can teach any dog, old or young, new tricks.
If we don’t coalesce the autistic identity better within our own community then someone else will always be making the rules for us and from what I’m seeing and experiencing, that’s not working out so well for a large portion of us. You can’t change the rules if you can’t first be a fully functioning member of society. For every excuse made to avoid discomfort, someone else gets the opportunity to make a decision setting the rules under which we will live and unless we get out there and show the world that we are not these coded caricatures that allistics find palatable to describe us because they lack the understanding of what autism really is versus their unchallenged impressions, nothing is ever going to change. We are allowing those who don’t understand because they don’t live the experience tell us what our experience is and instead of challenging these fallacious opinions and creating a coalition of change by educating one person at a time, we retreat to our rooms, sitting in the dark stimming for days wondering why life is so hard. It’s hard because those who could be doing more are wallowing instead of advocating.
We need to walk that wall and help our brethren over it or someone else who doesn’t understand our needs will do it for us.
I know it can be done and I know it can be done compassionately. It is imperative that our community makes the crucial paradigm shift from ‘can’t’ to ‘must’.