"Mom... Is this how you feel every day?!?"
My daughter says this to me as we're sitting at my younger son's Cub Scout pack meeting, listening to the shouts and shrieks of 25 sugared-up grade schoolers as they echo off of the vaulted ceilings and brick walls of the elementary school cafeteria and ricochet through our ears and around the inside of our skulls. She's trying to gather her thoughts and start on the first post for her brand new blog (apparently she feels the need to share her side of any stories I might tell about her on mine ^_^), and the incoherent noise is pretty much shattering any chance at organized thought for anyone over the age of 9. (The 9-year-olds, however, are coherent enough to be making hyena noises in the bathroom down the hall... because somehow one of them was able to crawl under the stall door or something equally hyena-worthy...)
Perhaps this seems like a bizarre question for a daughter to ask her mother... Allow me to explain.
I seem to be what today's educators and psychologists would call a "high-functioning autistic". I say "seem to be" because it wasn't until the late 1980s/early 1990s that educators began recognizing that some kids with autism (or, alternatively, Asperger's Syndrome) could still function in "normal" society and so could be taught in the regular classroom with everyone else. By that time, I was beginning high school and had already been classified by the teachers and counselors as "mildly disturbed", "creative but troubled", "anti-social", and (my personal favorite) "bright but has trouble making and keeping friends." Never mind the fact that as a small child, I met 8 of the 12 criteria for autism as listed in the DSM-IV (3 from section 1, 3 from section 2, and 2 from section 3), and all but 2 of the 8 criteria for Asperger's Syndrome. Never mind the fact that both unexpected loud noises and the normal hubbub of the classroom drove me to tears and always had. Never mind the fact that changes in the daily routine or in what I thought should be the daily routine would invariably lead to me screaming, yelling, and cussing at whatever adult thought they were in charge at the time. Never mind the fact that people always seemed to think I was guilty and/or lying about something because I could never hold anyone's eye contact for more than a few moments. No, because I was already over the age of 3 and perfectly capable of talking, I could, by definition, not possibly be autistic.
Now, logically, it doesn't make sense that high-functioning autism would have magically begun in or around the year 1985 (so that all of its subjects would be young enough to be properly diagnosed in the late '80s or early '90s). In fact, the growing prevalence of autism in the general population right now and the growing body of research into the neuroscience of autism tells me that autism has been around for generations, maybe even forever. So, what this tells me is that there are probably thousands of almost-normal people out there who, like me, have always struggled with autism and have spent their entire lives free-falling through this diagnostic generation gap.
I began researching autism and Asperger's about 9 years ago, when my daughter became friends with a classmate with Asperger's. As I started focusing on special ed and elementary ed in college, I found myself fascinated with the dynamics of autism; the more I worked with kids on the autism spectrum, the more fascinated I became. Finally, here were kids who made sense to me... why couldn't the other teachers understand them? Unlike most kids, the autistic students actually reacted normally to noise, schedule changes, people touching them, and all those other irritations of life... well, at least it seemed normal to me, anyway :-) I could relate to them in their meltdowns because I used to freak out in the exact same way; the things that bugged them bugged me as well, and when we could fix those issues, we all did better.
It wasn't until the past couple of years, as the research on autism spectrum disorders finally grew up into adulthood, that I realized that autism isn't just a childhood problem. In other words, guess what? Autistic kids don't magically turn "normal" when they hit 18 and graduate from high school; autistic kids grow up into... wait for it... autistic adults. Adults who still struggle with sensory overload, making and keeping friends, expressing themselves through speech... and all of the other things in this list and this article. And if there is such a thing as an autistic adult... then maybe I'm not such a freak after all :-)
So, what is it like to be autistic?
First of all, because my brain doesn't filter out background noise from important information very well, every day is a brand new boiling cacophony of chaos to struggle through. The combination of the fans blowing, the clock ticking, the computer humming, the neighbors' salsa music salsa-ing, and the cars driving by outside drives me up the wall. All the time. The only way to drown it out so I can think is to play music that's louder than the combination so that the main sound I hear is music I can take meaning from instead of white noise that makes no sense. It's not so much the volume that get to me as it is the sheer number of different sounds to try and sort through. If you're trying to talk to me, make sure I can hear you over the noise and if possible, look at me so I can read your lips; this helps me to focus on what you're saying instead of losing your words in all the auditory clutter.
Eye contact is actually physically painful. If I don't look you in the eye when you're talking, it's not because I'm not interested or because I'm easily distracted or that I think you're repulsive to look at... it's because if I stare into your eyes for too long I start to feel like you could reach out and attack me at any moment, and I panic. This is why I love my sunglasses and wish I could get away with wearing them inside and out, all year round... when I'm wearing my shades, no one notices that I'm not looking at them :-)
When I talk, be patient with me. Regardless of what may come out of my mouth, I'm really not a complete idiot (I'm of the opinion that "not a complete idiot" is a pretty good loose translation of the Latin term summa cum laude... o.O ) The thoughts are in there somewhere and make total sense to me... I just may need several runs at translating them into words that everyone else will understand. Sometimes, I practice and rehearse what I mean to say in my head so that it will come out right the first time... only to have random words of it disappear on me just as I'm about to speak them. So if in mid-sentence sometimes, I start gesturing wildly or describing something blatantly obvious ("door" seems to be a word that disappears on me frequently, for some reason...), or even start trying to say it in Spanish (which has been known to happen more than once), be patient. Pretend we're playing Charades and try to help me find my missing word... unless I ask you to stop because your guesses are so colossally way far off that they're distracting me from everything else in my head (For example, if I'm thinking "that thing that goes like this **raises hands to form a rectangular archway over head** and then you walk through it...", then "elephant" is probably NOT the word I'm looking for, no matter how loudly you say it... ^_^) Let me restart as many times as I need to to spit out my sentence... by the third or fourth attempt, you'll probably have a pretty good idea of what it is I'm trying to say anyway, even if I get frustrated and give up. And please don't laugh at me... I'm doing the best that I can.
If you must change something about plans we've made or the way things usually go, give me some advance warning first. Even if it's an email the night before or a phone call on the way home from school, any advance warning will give me time to process and rearrange my mind to fit the new circumstances. I'm not real big on surprises... Give me hints or clues and I'll happily play along, but just don't spring things on me out of the blue. Oh, and when I'm in the middle of driving somewhere and I'm taking a route that I know well and am comfortable with, please, please, PLEASE do NOT constantly tell me about all of the more efficient and/or better ways to get there... If you want to drive, then you can drive, but if you want me to drive, then let me drive the way I know best, OK? :-)
I generally don't like to be touched. Unless I know you pretty well and trust you, and only if I know it's coming... like if I can see you coming from across the cafeteria and you're calling me "MOOOOOOOMMMM" at the top of your lungs as you run across the room to grab a hold of me. That might be OK... as long as you're one of my kids, one of their longtime friends, or one of my students, and not some 43-year-old guy who calls me "Mom" because he can't remember my name o.O So, basically, if I look like I need a hug, ask me if I'm OK with a hug first, OK? Because I really do like (and need) hugs and holding hands and a gentle touch on the shoulder and whatnot, just like everybody else... I just need to be prepared and know to expect it first.
Social situations-- especially if I'm not expecting them-- scare the living bejeebers out of me. This doesn't mean that I want to be a hermit and never ever see or talk to anyone-- heck, I'm an elementary school teacher and a mom, so that's not exactly an option :-) But it does mean that I have a LOT of preparation to do before I can be social and it takes a LOT out of me to be social. In all honesty, I have got to say that the most useful classes I ever took in any school anywhere were the drama classes I took in high school; it was in Mr. Putnam's drama classes that I learned how to create a character, put on that character, block out anything but that character, and stay in character until the curtain closes and I can finally be myself again. When I have to go out and be social-- whether it's in front of a classroom, on a school bus field trip, at a high school dance, whatever-- I have to take time beforehand to get over the inevitable pre-curtain panic attack and put on my competent-confident-teacher/competent-confident-parent persona. Only then can I go out and do what I have to do each day... and for the record, I don't mind doing it. The hours are great, the people are fascinating, and every once in a while I even have fun too :-D
After a social event, when the curtain falls and the audience (i.e. the rest of the real world) goes home and I am all alone by myself, I lay the persona aside... and usually proceed to have a nervous breakdown. I shake, I pace, I want to scream but can't because my husband and kids and the rest of the neighborhood are usually trying to sleep and would really not appreciate being awakened by a screaming banshee :-/ So I listen to my music really loud in the headphones or I blog or I sometimes just sit and wait for the synapses inside my head to stop firing like firecrackers so I can sleep like everyone else. This can take hours. And I feel like my skin is trying to crawl off from the inside out and there's nothing I can do to keep it together except to sit very very still... and it can take hours.
So, stupid question time... Why bother? Why do I teach, chaperone, let my kids bring their friends home after school each day if it drives me absolutely nuts? Why don't I mind doing this crazy stuff? Because the kids and the teens I get to work with are waaaay more than worth it, and who knows... maybe, just maybe, if I can set aside my own little chaos for a while and focus on them, then they will see that they are worth the world to me, and to the God who made me-- and maybe some of them too-- this way.
I don't believe that I was made this way by mistake, or even by accident. I'm convinced that a huge number of our modern psychological and learning "disorders" are actually not disorders at all, but are instead a reflection of our increasingly intolerant educational system. We carve out a narrow niche that we demand all students conform to in order to succeed, and then we pinpoint the kids who don't fit perfectly into that niche and give them a label of "_____ disorder" so that we can blame factors out of our control for our failure to educate every child. We have our autistic disorders, our attention-deficit disorders, our oppositional-defiant disorders, our anxiety disorders, and so on... and in labeling these students as "disorderly," we give ourselves as teachers and as adults a pass on educating them, convincing ourselves that if these kids don't learn, it's not our fault ("we don't have the training to manage these kids") or their fault ("they can't help it, they have a disorder"), but just the way it goes sometimes.
But what if all of these "disorders" are actually just beautiful variations in the way God makes individuals? What if the disorder is in our unwillingness to see outside our own little boxes, and not in the way these kids' minds work at all? Ask any parent of an autistic child, or a child with ADHD, or an anxiety disorder, and they will tell you that their child is brilliant and special and full of potential... if only other people would choose to see them that way.
So, basically, I'm choosing each day to live like I was made this way on purpose, like my autism is a gift from God. He would not have given me my autism unless He knew I was strong enough to handle it, and unless He knew of a way for me to use it to love others. So... this is why I go out in public when it drives me out of my mind, why I volunteer for all the crazy chaperone duties that make my friends think I'm out of my mind, why I open my home to all of my kids' crazy friends and their mile-a-minute ramblings that prove they may be out of their minds... It's because each and every one of them is totally worth the insanity :-D
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"Mom... Is this how you feel every day?!?"
As you might guess, the answer to her question is yes... This is what I feel every day. The noise, the chaos, the inability to focus or concentrate, the panic that it creates... all of those are a part of being autistic. But I know that this is the way I was made, that I'm not a freak of nature after all... and that there is a reason I am the way I am.
I also know from her reaction that my daughter is not autistic, and that because she is a "neurotypical," she will probably have a simpler life than I did. She doesn't view herself as a freak or a mistake, and for this I will always be grateful. But if things like this make her aware of what people like her childhood friend and I go through each day, then perhaps she will have more compassion and a better understanding, and will be able to share that with others.
April 2nd is my daughter's birthday; it's also World Autism Awareness Day, when people all over the world are supposed to wear blue to show their awareness and support of people with autism and for autism research. I'm sure that's all fine and dandy... I've worn blue to support my students with autism and Asperger's in the past, and probably will this year as well just for the heck of it. But I think that, as far as raising autism awareness goes, I can be more effective by living my life out loud and being honest and open about who I am and why I think I was made this way with anyone who will care to listen. Because for me, every day, every hour, every minute is about autism awareness.
For some of us, every day is April 2nd.
