I understand you’ve been recently diagnosed. By “recently”, it could mean in the past few weeks, months, or even within the past year. But in any case, if you’ve lived your life up until relatively recently, not knowing why you felt “different”, struggling with social connections, and just feeling out of place for no reason you could clearly understand… only to be presented with a diagnosis of Autism or Asperger’s Syndrome… this letter is for you.
I wanted to just say, Welcome! Welcome to our world. Now it’s your world, too.
It’s a big place, this autism spectrum, and it can get pretty overwhelming and confusing at times. But now that you have a diagnosis, it doesn’t need to keep feeling that way.
Maybe you have a formal, official diagnosis from a doctor or psychologist. Maybe you have been researching the autism spectrum on your own for a while, following the trail of clues about what makes you … you, with a growing sense of relief, combined with dismay. Maybe you’re happy about it. Maybe you’re upset. Maybe you’re wondering why nobody mentioned this to you, before. Maybe you’re wishing nobody had ever mentioned it at all.
Maybe you feel sad. Maybe you feel relieved. Maybe you’re angry… and getting angrier every day. Maybe you feel a deep sense of grief and loss at all the years you struggled in silence and isolation, unable to explain to anyone what was going on inside of you, unable to understand why nobody could understand you. Maybe you feel like a weight has lifted off your shoulders — and your heart — and finally FINALLY you can spread your wings and fly.
Maybe you’ve just found out for the first time, that you have wings at all.
Maybe you feel something I haven’t articulated above. Maybe you don’t know what you’re feeling.
Whatever you’re feeling — or not feeling, you’re not alone.
We all come to this place by different means. I was “ushered” to this place of knowing by my kind co-workers who welcomed non-verbal, frightened, skittish me into their midst in January, 1997, and after a year of watching me struggle socially and avoid eye contact and quietly keep to myself, they pointed me to an online Aspie Quiz and urged me to complete it. When I did it — twice, once on paper in English, once online in German — and I scored well within the autism spectrum, they were elated.
“See?!” they exclaimed. “See?!”
“See what?” I grumbled, and went back to work.
But over the coming days and weeks, I thought more and more about that quiz, and I did my own digging. There wasn’t much about women on the spectrum in 1998. There was precious little about adult men, too. My Aspie path meandered… then disappeared into the overgrown jungle of my discombobulated life.
In 2008, I had a sudden upsurge of difficulties with meltdowns and social problems. Deeply worried, I started researching my symptoms. Again, Aspergers came up. Again, I saw myself in those questions. This time, there was more information… and it included women (a little). I pursued a formal diagnosis, but I was told I was too empathetic. I had “Theory of Mind”. I was too social. I made eye contact.
And everything I knew to be true about myself, was cast down in the dust and trodden on by people with important letters at the end of their names. They knew, I didn’t. According to them.
They were wrong. I knew. I knew more than they. I just couldn’t get it out. And even if I had, they just couldn’t see.
So, I got help on my own terms. On the sly. I worked through my many issues with an expert who was convinced there was Something Else going on with me. For most of the years I worked with that individual, I focused on my Aspergers issues. They never realized it, because I never called them that. I just talked about my issues in broad terms, and I invented ways to cut through the confusion that had been the hallmark of my life for so long. I did get help. But the Ph.D. who helped me, never realized that’s what he was doing.
My path, as unconventional as it has been, has still been a very clear Aspergers path. Autistic. Isolated. Alone. Non-verbal. Selectively mute. I have struggled mightily with sensory issues that had me wincing in pain from loud noises, shocked and stunned from bright lights, feeling like the skin was being peeled off my forearms, and a million other little distractions, pains, minute and passing agonies were pinning me down like so many Lilliputians tying Gulliver to the cold, hard earth.
I have melted down. I have shut down. Too often to count. I have remembered many details that I wished I could forget, but couldn’t recall the most important things I wanted to remember. And I have wept bitter tears of despair in the darkness of my bedroom, keeping my sobbing quiet, so I wouldn’t have to explain to my partner why I was crying. Again.
We all walk this path, in one way or another, when we are on the spectrum. It can be lonely. And it can feel like too much, many times. Some of us decide we’ve had enough, and end our struggles by our own hand. Some of us decide that we’ll postpone The End for just one more day, and see what tomorrow brings. Who knows why some of us survive, while others succumb? And then there are those of us with depression, who feel as though we’re lingering on without purpose, practically dead to the world. Just not quite.
But I don’t want to paint too dire a picture. That wouldn’t be fair. It also wouldn’t be true. Indeed, we are a glorious people, we autistics, brilliant and shining as any burnished golden orb in the mid-summer mid-day sun. We love deeply, we feel fully, we do very little with half-measures. We are profoundly invested and interested in this world, and we learn to know it like few others. The world has us to thank for its most awesome inventions, its most mind-boggling innovations. We create. We manifest. We bring into being ethings that others can scarce fathom, and would never have the energy or the endurance to bring forth.
We have stamina, we have strength. Our thoughts are comprehensive. Our logic is thorough. Our reason… it stands. We are honest and brave and have the courage to pursue things that precious few others will bother with. We can be such lovers of Truth, that we will part ways with our best friends over differences of conviction. We will even sacrifice the unity of our own community for the sake of principles. We can be such devotees of Justice, we will forego personal gain if that gain impoverishes others. Not all of us are so scrupulous, but enough of us are, that it shows up in clinical descriptions of us. And it is part of our collective autistic face we show to the world.
This is the community you are coming into. A world of extreme dreamers, extreme doers, extreme creators, extreme experiencers, whose impact on the world is as undeniable, as our value to that world is denied. We are both victims and benefactors, overlords and shackled servants. And the rest of the neurotypical world hasn’t decided “what to do with us”. Not just yet.
Don’t worry. As Big as this is, it’s also most human. And the gentle souls you will find here, with a host of co-morbid conditions, baggage, legacies of sensitivities, pain, difficulty, and unbridled joy, will welcome you. Not all of us, mind you, as there are some real assholes in our midst. But enough of us. Seek us out. Seek out your tribe. We are all so very different, and yet there are enough of us who are different in similar ways, that we find comfort, solace, safety, relief in each others’ company.
We are live, in person. We are online. We are at work. We are walking past you in the park. We are at your church, your synagogue, your mosque, or your Meetup. We are in the barber shop, fretting over our smartphones as we dread the “Next!” call that will put is in the dreaded hair-cutting seat. We’re in community theater. We’re in the local choir. We’re at the concert or the ballgame. We’re at your local library. We’re pushing our grocery cart past you quickly in the supermarket, just trying to get the hell out of that horrible place. We’re sitting in the back corner of the room, petting the cat and reading titles on the bookshelf, as everyone else at the party mixes and mingles. We’re sitting beside you on the plane, noise-canceling headphones on our ears, maybe a sleep mask over our eyes, and we jump when the flight attendant touches our shoulder to ask if we want a beverage.
You may have recognized us before. Perhaps there was something… familiar about us. Something you couldn’t quite name. Maybe you’re already friends with a lot of us, without knowing why. Maybe you wanted to be friends with us, but your family and other friends called us “weird” or “freaks” or taught you to be afraid or ashamed of us. As you become more comfortable in your autistic identity, you will recognize us more and more. You will know us when you see us. You will know why you recognized us before.
Whatever everyone else tells you, we are totally awesome individuals. All that stuff about the violence and the “nut-bag” social ineptitude — those are either the most glaring examples of human dysfunction, or they are the most glaring examples of inhuman prejudice. Vastly more of us are the targets of violence, than are the perpetrators. And once you understand why we stim — rock, tap, fidget, clear our throats, jog our legs, clench our fists — and repeat the same lines from movies amongst ourselves like a secret code, we’re actually a whole lot of fun.
We know how to Live and Let Live. We know how to Accept. We know how to Love. We have an ear ready for listening, and our words in response are often so carefully chosen, we don’t seem to have much to say. We are a tribe like no other — dispersed far and wide, separated by miles and years and cultural barriers, yet oh so eager to seek one another out and Connect. Without pretense. Without condition. Without judgment (most of the time).
Of course, there are exceptions. We’re human, if nothing else. We can fight and bicker and call names and poke and prod at each other over the finest of hairs split right down the middle. We expend enormous amounts of energy on proving our points. But we’re also quick to admit when we’re wrong. Because when you’re wrong, you’re wrong. And it’s best to admit it. We are extreme in so many ways, and yet our extreme-ness tempers our characters, because so many of us know how quickly we can escalate and turn a flickering match into a raging brush fire. And we often take great pains to prevent that from happening.
Of course, nothing I’ve said is 100% true. It’s an approximation. A guesstimate sort of attempt at typifying a community that has no home, no central organizing nexus other than a diagnostic term “Autistic” shared by an Austrian working under pressure from Nazis, and a Russian-American psychologist without a psychology degree. We are as anomalous as we are ambiguous, and that doesn’t always work in our favor.
Countless people will seek to analyze you, seek to categorize you, seek to diagnose you — with something or other. Some of the pronouncements will be beneficial. Others will be detrimental. Some may make you feel like you’re not in possession of your own mind or body or life. All of them, I predict, will serve the needs of those making the assessments.
And they will be wrong, at least in part. They will never know all of you. Never solve the mystery of YOU, 100%. They will do as I’ve done — make approximations, guesstimates — they’ll come up with their own ideas about what’s “wrong” with you, and how to “fix” it.
But only you will ever know for sure just who you are, or how you are. Only you will ever see into your own heart, hidden behind the images that defy the use of words. Only you will feel in your bones what cannot be expressed aloud. Only you will gauge, from one day to the next, just how well you are doing that day — and what you need to do better, if you so wish. Only you can ever find the key to the locked-away version of you. And in fact, you are the key.
You are the key to your own life.
Remember that, when the world seems to be too much for you. When all the “typical” ways and wises are failing you on all sides. Remember that, when you are struggling for words, or groping for the meaning of what was just said (or done) to you. Remember that, when your senses are rebelling against you, the world is flying by so fast, and you decide you’ve had enough for one day. Remember that, when you are in the peaceful solitude of your own company after a long day among others. Remember that, when no one understands. Because they can’t. Not really. Only you can.
And you are not alone. We are myriad. Untold thousands. Maybe millions. Some of us you’ll find online. Others you’ll chance upon in the park, at your church, your synagogue, your mosque, or your Meetup, in the grocery store, or at work. And each of us is our own particular key to our own particularly locked life. We know what it is, to be so alone. And we know what it is, to be fine with that — to revel in it, even. We are here. We are here for you. And for everything you are going through, thousands upon thousands of us have already been through it.
And we are still here.
Look for us. Find us. Be with us. We’d love to meet you.