(Image Credit: Keri Bowers, a co-founder of one of my favorite sites ever, The Art of Autism collaborative (an article she has written can be found here), who is also a film-producer, speaker, writer, and mom. You can find her on Twitter at @autismfilms as well. Thank you Keri for giving me permission to use this beautiful image!)
Although this post is geared mostly toward adults (of any age), I want to include teenagers as well, because it may be relevant to–and provide comfort for–teenagers, too. What can I say; I’m inclusive 🙂
As many of you know, I took my first online questionnaire a little over 11 months ago, and the score was pretty strongly indicative: 43 out of 50, and the cutoff was 32; anything over 32 was, according to research, strongly indicative of Asperger’s/autism spectrumhood.
I still remember the feeling.
I froze. My eyes involuntarily went wide. My blood ran heavy. The world around me stopped, ceasing to exist.
I stared at my mobile phone screen. Could this be for real? How could this be? The thoughts twirled around in frantic fragments. You mean to tell me….all these years….no one knew….who am I really?
Except that it wasn’t traumatic, like it might sound. It was more like shock and excitement, all rolled into one.
I wanted to devour the subject, to eat it alive. I wouldn’t rest until I was satisfied, and who knew when that would be?
Since I’m coming up on a year, and I perceive life in series (plural) of cycles, multiple cycles, even cycles within cycles, I want to reach back out to those who are just coming into their Aspie/Autistic Own. Maybe you were just recently diagnosed. Maybe, as of this writing, you’re like me, reaching out in the dark in order to make your way through life, and our meeting up is in the future. Maybe you were diagnosed a while ago but are just now coming to terms with it and reaching acceptance.
Either way, this post is for you ❤
Dear newly-discovered/diagnosed Asperger’s/autistic brothers and sisters,
Please allow me to welcome you to the tribe. I’m not a tribal elder; I’m more like last year’s floundering, confused, green, wet-behind-the-ears inductee. I don’t know everything, at least not yet (grin). But I’d still like to welcome you.
I’d like to sum up some of the common experiences that I have personally felt, and then compared notes with other people on the spectrum, who concur that they have felt the same. I write this in hopes that anyone who feels alone may not have to feel so alone anymore.
If you’re anything like me (which I’m sure you are because the vast majority of us seem to share common parallels), you may have already begun to suspect something. Maybe you didn’t have any idea that it was Asperger’s/autism. Maybe you had begun to recognize your own idiosyncrasies and perhaps you’d begun to develop your own lexicon, using phrases like “my quirks”, having a tough time “switching gears”, becoming increasingly self-conscious about the irritation you could no longer hide when someone interrupted your deep concentration or abruptly changed plans on you. Maybe you kicked yourself for being “overbearing”, “controlling”, or “obstinate”. Maybe you loathed the background noise or a particular source of light or a specific type of sound, but may not have thought anything of it, since no one else around you seemed bothered by it.
In fact, they may have been more bothered by your reaction to whatever it was you couldn’t stand. And you might have begun to come down even harder on yourself for being “unreasonable” or “cranky”.
At any rate, various aspects in your life might have come dangerously close to critical mass, and certain aspects of your life may have even come to a head. You might have even been given an ultimatum or two by people close to you.
If you’re anything like me, once the possibility of autism is on the table (or a diagnosis has been rendered), you’ll probably begin a transformation, a metamorphosis of sorts, if you haven’t already.
You may begin to see the world through new eyes. You may have the opportunity to get a fresh take, a “Take 2” of the world. You might begin to perceive everything differently, filtering it through a new Aspie/autistic lens, seeing old things from new angles.
You may also begin to look back. Old memories emerge from the lake-bottom slime of long-buried memory. You may laugh, but mostly you’ll probably cry. Those tears may have many sources, and they don’t always take turns; the tears may come from several sources at once. It’s usually not like nice neat compartments – “these tears are for pain”, while others are for relief, and so on. Often, they’ll be jumbled together, and you may find yourself tailspun into a state in which you feel alien, a state in which you may cry for multiple reasons at a time. Tears of pain and tears of healing go together. Often, tears of relief join in as well, all combining together like raindrops on a windshield as gravity slides them down toward the bottom.
Your curiosity may get the best of you, and you might seek out the voices of others to see if your harmonies meet on the same wavelength. You may find that not only are you in harmony, but that you’ve been singing the same note all this time. You may marvel at the eeriness of such a concept, because at no point in your life had you likely been able to identify with or relate to any other living soul, and yet, here are people singing your song. You’ll likely get goosebumps, that have no regard for temperature. Many of my goosebumps came in 100-degree (Fahrenheit) weather.
You might find immense therapy in blogs, websites, and sometimes on social media. It might even seem like you’d never realized you were a lost child before, until you found your family. And here’s your entire family, waiting for you with open arms.
You may find a sort of “spirit-family” phenomenon, often called our “Neurotribe”, or our “neurosiblings” or “soul siblings”. You may go through rapid-fire series (plural) of moments whose shockwaves ripple through your mind and body, as you say “omg yes! Me too!” and as a result, you may begin to get a little self-conscious because you might think you’re starting to sound like a broken record.
You might dabble or even fully engage in the activism aspect, meeting spirited people and perhaps blogging about muddy or unpleasant subjects for the sole purpose of getting the word out and spreading the awareness. Your enlightenment becomes that of the rest of the world, too, with one person at a time.
Your search engine might seem to practically start to emit proverbial steam, due to the sheer number and frequency of searching for “this” or “that” about Asperger’s/autism. During this leg of the journey, you may find yourself having just as rapid a series of “a-ha!” moments, in which you realize that your entire life can now be decoded and for the most part, debugged. The gaps between the spectrum and non-spectrum worlds remain, but at least you’re no longer trying to jump the canyon, because for the first time in life, you can see that it’s there.
Learning about your newly-realized neurotype may become a full-time project, and you’ll want to discover every aspect of it. Digging deep into the recess of Google search results, you may stumble upon new concepts, and a newly-discovered lexicon to match. Your vocabulary, ways of thinking, and even ways of talking or otherwise communicating might undergo a transformational shift.
You might find yourself experiencing the peaks and valleys, the ebbs and flows and the ups and downs of the pesky emotional side of Asperger’s/autism. You may experience random surges of various emotions that may strike at equally-random, inopportune times. Out of the blue. Or maybe purple. Or maybe angry red. These emotions might have a wicked wingspan, providing an all-inclusive package. Such as resentment. Relief. Liberation. Sadness. Guilt. Understanding. Vulnerability. Enlightenment. Grief. Awareness. Anger. Contentment. Solidity. Loneliness. Self-compassion. Irritability. Camaraderie. Confusion. Excitement, even pride. Vindication; validation. Instability–or, stability. Identity. Healing.
I’ll give a few examples.
Resentment may be felt toward your parents, your teachers, your classmates, your significant other, your ex-significant others, your coworkers, your supervisors, and so on, perhaps for criticizing you, hurrying you, doubting you, failing to take you seriously, refusing to listen, harping on you, nagging you, being insensitive toward you, and so on.
Grief may take on several forms. You may experience a grieving of sorts–not for what was, but what could have been, had the people around you realized you were actually autistic. Or, you may (or may not) enter into a grieving period for the pre-discovery period of your life, before you realized you were on the spectrum. Since Asperger’s/autism discovery has no “undo” button and there are some things you can’t un-know, you may grieve for the time in which you were unaware, when you didn’t know that you were somehow “abnormal” (in terms of conventional thought). I didn’t go through the latter example of grief, but I did–and sometimes, I still do–experience the former.
Relief may refer to those “a-ha!” moments, where you’re piecing together all those frayed, seemingly-unrelated loose ends, that actually end up being connected after all. “Oh, that’s an autism thing? I never knew!” “So that’s why I always (or never could) do that”. Or, “so I’m not actually mean/lazy/etc after all!”. And of course, “wow! This is actually a thing! Shared by other people in this world! There are actually other people out there who are like me!”
Solidity, security, vindication, and validation, can all bring a sense of peace. Learning about yourself in a way in which you understood instinctively but might never have been able to describe can catapult one’s self-esteem. “See? See???” we want to holler from mountaintops. “I can be me, without shame!”
You will probably find that Asperger’s/autism explains every one of those “loose ends”, those unresolvable “quirks” that you might have been self-conscious of, or even loathed about yourself, but try as you might, you might never have been able to change (except maybe by putting on a mask of sorts).
As time goes on, you may begin to identify triggers, triggers of irritability/anger, anxiety/fear, sadness/depression, and so on. You may begin to realize, for the first time, that certain things (especially in the sensory realm of visual, auditory, tactile, taste, etc) affect you in ways you might not have realized before. You might come to find that you’re more sensitive to certain things or that specific things bother you. People around you may express skepticism or confusion, saying things like, “why don’t you do (x) anymore?” You might answer, “because I can’t.” They might retort, “well, you could before; you didn’t seem to have an issue with it then.” To which you could reply, “no I couldn’t. I just didn’t know that. I’m aware of it now. Thank you for your concern/patience/etc.”
If your autism spectrum discovery came about ultimately via your own research (whether you began to suspect it yourself, or someone else pointed it out to you and you went to research further on your own), then you may begin to wonder whether or not you should seek a formal diagnosis. I’ve written several posts on this topic, which I’ll link to below, for whomever it helps.
In time, you may actually end up loosening the mask that you might have constructed for the ever-watchful, ever-critical, appearances-are-everything public eye. You may give yourself permission to act more naturally, which, may include “acting” more autistic. As you gain corroboration, you might end up desiring to be more authentic and simply shoving the onus back on the rest of the world to “just deal with it”. You may feel that this is a case of turnabout being fair play; after all, they’ve probably sent you the message that you needed to “just deal with” whatever affected you but you might not have been able to identify or express, all these years.
Sometimes there is an instinctive desire to “push back” against the world, turning the tables and foisting the idiosyncrasies and hypocrisies of the world at large back on them.
Other times, there’s a burning desire to educate, motivate, and activate the rest of the world, to get them to see things from your perspective. You may feel that you want to burn a bridge.
You may find yourself wanting to seek out other autistic people, and make friends with them. This might be the first time in which you actually feel safe enough to let down your guard somewhat and be honest, without being judged. And rarely will you be judged; your experiences and perspectives will likely be shared by many. It may surprise you.
Welcome to our world, new autism spectrum brothers and sisters! Our world is a bustling, vibrant, eccentric place. It’s full of magic and wonder and enchantment. It’s beautiful and supportive. It’s embracing and accepting. In most cases, it’s inclusive and even intersectional (intersection of autism and something else, such as being black or female or LGBT+ or a physical disability or a chronic or having a “co-morbid” condition such as depression or ADHD. You may very well find that the autistic community is extremely accepting and open.
At any rate, you will likely learn more about yourself after your discovery than you ever knew before. You may find people you never thought could exist. You may derive support from previously-unknown places. You may make unlikely friends.
It’s all a potential part of the process. Some blogs, people, groups, and whatnot may speak to you more than others. That’s OK. It took me a while to realize that I didn’t have to be chummy or interact with everyone on the spectrum. Being on the spectrum doesn’t necessarily mean that you aren’t different from that person. It doesn’t mean that you have–or that you have to have–everything in common.
It just is what it is. Feel free to come on in; in most places, the water is warm. Feel free to explore. Feel free to find yourself. Feel free to be….free.