As a father of a child living with Autism I have come to find that I don't experience a single emotion at any given time. I experience all of them at once.
Since April is Autism Awareness month I decided to commemorate it by having the tips of my hair dyed blue. After a day or two my hair then determined to transform the color to more of an aqua. I now look like the guy who got drunk and passed out around a giant bowl of Easter Egg dye. In hindsight, I don’t exactly know what in the hell I was thinking when I made the choice to go from a salt and pepper mane to a shade just off of Smurf vomit. My pastel colored locks have caused my teenage sons some serious angst. They have informed me that I am no longer needed to pick them up for school anymore. In fact, they have told all of their peers that I have been eaten by a bear, so they think it’s best if I don’t leave the house again. Ever.
The one thing that I’ve noticed since I went blue is that people whom I have never met before have decided that I’m the kind of guy who likes to carry on conversations with strangers. That could not be most opposite from the truth. Strangers are one of my least favorite kind of people in the world. The only other people I try to avoid more than strangers are people that I already know. Yesterday one of these stranger’s broke the silence while we were waiting in line for coffee and asked me why I had chosen to put blue in my hair. The question was asked by a smiling older lady who was probably used to talking to friendly people who enjoyed the company of others — little did she know that she had just engaged a guy who is one step away from becoming The Unibomber. Without making eye contact, I half-turned around began to explain that as a father to a child living with Autism I was doing it as a way of promoting awareness. Ah snap. There you go. Conversation over.
“How does blue promote awareness?” she pressed. Suddenly I was being interviewed. I replied that it was because blue is often used to identify with Autism — but in my mind I was struggling to come up with where I had actually heard that. Had I made that up? If I was lying to this woman it probably wasn’t going to be the last time.
“Is that because blue is the color of sadness?” the older woman asked. She was really interested in our conversation now. I let out an audible sigh and turned completely around and gave her my full attention. We were now in a full scale exchange of interpersonal communication. This is everything I try to avoid in my daily life. Talking to other humans is so exhausting because they expect me to say interesting things — which is a serious problem. Unless we are going to start talking about my curvy and unique body shape than I really have nothing interesting to say. I was pretty sure that this entire conversation was going to give me cancer. I’m still waiting on the lab reports to confirm it. I believe firmly in the fact that every time we engage in small talk we are letting the terrorists win.
“I don’t think that’s why,” I said without a shred of conviction in my voice about her thoughts on the color blue in relation to sadness.
“Or maybe the blue represents hope?” She suggested trying to help me find an answer that would satisfy her.
“Maybe…” I answered. I shot her a quick smile that was I had intended to be my parting thoughts on the whole thing. It only invited more banter. I need to work on my smile. It always sends the wrong message to people. I could feel my my elbows begin to perspire. I just wanted coffee.
“Blue is always the color that I associate with being sad,” she said. The smile hadn’t worked on it’s own. I was now employing a smile and a rapid set of head nod’s to non-verbally cinch things off between us. I’m sure from anybody on the outside watching our interaction I looked like a serial killer.
“Does it make you feel sad?” the person asked. This wasn’t feeling like small talk anymore. It was starting to feel like big talk. I switched my heart to Yellow Alert. Any more personal questions and I was going to have to take some drastic measures to put an end to this conversation. I thought that if I mentioned that I was pretty sure that I had an un-treatable form of scabies that she might excuse herself.
“Blue doesn’t make me feel sad, it doesn’t make me feel anything,” I replied now wondering if it would be a good time to fake a seizure so I could get out of this interaction. I have never had a seizure before so I wasn’t sure if I could pull it off with a ton of authenticity but I was willing to give it a shot. I was right in the beginning stages of working up some fake foam in my mouth when the person then sucker punched me with a follow up question that I didn’t see coming.
“No, not blue. Does Autism make you sad?” Red Alert.
Setting aside the abject presumptuousness from this stranger, it was a question that cut to the quick, and caused me to put up all my shields. Action stations! Sad? Me? Never! I don’t get sad! I get even! I let out such a guffaw that made me sound like a horse who had just heard a really lame joke from their donkey friend near the watering hole.
“Never,” I lied. I turned around and looked ahead in the line. There was still four people in front of me waiting to make their order. Crap cakes. I was forced to make a decision between being socially uncomfortable and the my daily congeal visit with caffeine. Of course, I chose coffee — but I did wish her a good day and gave her my back. That was the end of that — until it wasn’t.
“I can’t imagine how you feel” she said with such empathy that it pissed me off. I didn’t ask for this woman’s pity — although I’m pretty sure I did invite it once I dyed my hair and got in line with her.
I didn’t respond. I acted like I hadn’t heard her, but she knew I had. The silence between us grew and grew until it became a living thing. We didn’t say anything else to each other again. Her words kept bouncing around my head:
I can’t imagine how you feel.
Neither can I, Lady.
The truth is I have clue about how I feel about Autism — even after all of this time.
After a decade and a half of watching my son, Noah, live with Autism I still don’t know how to feel. I can’t identity a single prevailing emotion. It’s more like I’m encountering every emotion all at once. It’s a sentimental burrito that is packed with heartbreak, grief, love, anger, joy, guilt, acceptance, fear, perseverance and surrender in every bite. When I try to explain how Autism affects me I would be best advised to just open up the dictionary and start listing off every possible feeling that a person can have. Watching my child struggle with something that is beyond my control is the biggest tax that has ever been levied on my heart. It’s a sensation of such helplessness that lends itself to each and every human feeling that a person can experience. For me, I don’t have emotional episodes in separate or identifiable waves. These feelings all exist and come through at the same time — all of the time.
The only thing I tell other parents/caregivers of children who are living on the spectrum is that I have come to find that there is no single appropriate way to feel. I used to struggle with not being angry enough about what was happening to Noah. I wanted to be filled with rage — but I couldn’t muster that one specific emotion without other feelings coming along for the ride. During the times when I thought that I should be unbearably sad it would be a feeling that would accompanied with an undercurrent of hope that would temper it. Being a witness to my son’s brave journey with Autism has forced me to experience so many emotions simultaneously that I no longer can feel the difference between them. It’s like being at a really loud rock concert and trying to pick out one of the eight bass guitars. For me, it’s all just a wall of emotions that comes to me all at once. They just keep mutating from one feeling to the next. Autism isn’t a roller coaster of peaks and valleys for me. It’s akin to being in a rocket launch where I’m living in a constant state of face numbing transition on the back of a giant explosive rocket.
Don’t worry, it doesn’t make any sense to me either. I have no doubt that plenty of other parents of children living with special needs would describe their experience in a different way. This is just how I have come to encounter Autism. It’s like all of the characters of Pixar’s “Inside Out” got sewn together by a sociopath scientist and shoved into my heart. It’s impossible to place my finger on just one emotion. The lines between my feelings have blurred. — I can’t tell the difference of how I feel from one moment to the next — so I stopped trying — just like I did with trying to identify rocks when I was a 18-year college freshman.
Geology 101 was the very college class that I ever took and it instantaneously ruined me for appreciating anything that higher education would ever try and offer me. I distinctly remember walking across the campus of Chadron College thinking how exciting it was that I was about to embark on my new adventure into mind expanding self-growth. For a few moments while strolling with my new college backpack I was actually feeling optimistic — which has never been a natural state of mind. I’m typically a person who assumes the worst of any new situation.
If I’m going to be trying a new restaurant I spend my time beforehand stashing Sudoku puzzle books in the bathroom for upcoming bout of food poisoning that is sure to follow. I’ll cancel all appointments I will have for the near future.
*On The Phone*
Me: I’m going to have to cancel my dentists appointment for next week.
Receptionist: Okay. When should we reschedule it for?
Me: Uh. I have no idea. I’m planning on having some stomach cramps, nausea, and an unnatural growing attachment to my toilet for an undetermined amount of time.
Receptionist: I’m sorry that you have the flu. I hope you feel better soon.
Me: I actually feel pretty good right now.
Receptionist: I thought you were sick?
Me: Nope, but it’s coming. I’m about to play with fate.
Receptionist: Uh, what?
Me: I’m about to dance with the devil by the pale moon light.
Receptionist: Are you having a stroke?
Me: I can already taste the bile in my mouth.
Receptionist: I’m hanging up now.
Me: Wait! Have you tried the new Thai restaurant downtown? Hello?
I have taken being glass half-empty kind of guy to the next level — the part of my glass that is filled is actually an Agent Orange smoothie I expect the worst when it comes to things trying for the first time. However, on that sunny fall day in Chadron on my way to my first class as a brand new college student I was feeling like a different person. I was leaving my checkered past academic record behind me and emerging from my dingy cocoon as a brand new creation. The old ways of desk-drooling my way through the educational system were not going to cut it anymore. I was on the threshold of getting my shit enlightened. I was going to come alive under the guidance of what I’m sure were a slew dynamic college professors who were going to leading lively discussions about the mysteries of the world. I could already feel my brain swelling to make room for all of the new concepts and grey area questions that I would soon be struggling with. Sure, I was just starting with Geology — but that was just the beginning. I was now on what was going to certainly be an exciting slippery slope of education that within a few years was going to have me sitting in a think tank somewhere working out how to create a wormhole between Universes.
One of the romantic notions I had about college was that I would be spending my time grappling with some serious abstract issues and trying to solve taboo riddles that had plagued humanity for generations. What exactly is a tree? How exactly did they fake the moon landing? For what sinister reason did an alien race leave Dan Quayle behind when they abandoned their outpost here on Earth in the late 70's? Was algebra just invented as some sort of psychological experiment meant to cause teenagers to doubt in the existence of a higher power? These (and many others) were all the types hidden truths I thought that I would be accessing in college. I was entering higher learning like Fox Mulder on his first day of work for The X-Files. The truth was out there and I was going to be taking it in suppository form, please.
My idealistic dream of what college was going to be like died within two seconds of my walking into my first classroom. I was expecting to stroll into a room filled with prehistoric rocks and excavated stalactites. In my mind there were going to be no desks — just work stations where we students would spend our time exploring (with very expensive lasers) the inner workings of exotic rocks. I was sure that my Geology professor was going to be an eccentric explorer who had just returned from working in an abandoned mine somewhere in South America where he had just discovered a new form of mineral that could be used to help power a time machine. Eventually the two of us would be come the best of friends and I would spend my 20’s traveling through space and time with him. I would be the Sherman to his Peabody. Instead I was met by a huge sterile classroom that didn’t feature one single rock. It smelled like Clorox and college freshman body odor. I had to be in the wrong classroom. This looked more like a room where really boring people met to mindlessly sit and listen about boring shit — I turned out to be right.
Geology was was taught by a gentleman who I never actually got a good look at because the room was always pitch dark and he stood behind a slide projector in the back of the room. He would sneak in once we were all seated and click off the lights. I assumed that he was on the run from the law, mafia or an angry ex-wife. My professor was always just a silhouette with a serious smokers voice to me. I never once spoke to him personally. Every day I would shuffle into classroom with my other fellow victims to discover a worksheet on our desk that featured the twenty (or so) different rocks that we would be going over. Professor Shadow would flash an image of a particular rock and start going over all of it’s properties.
Here is an excerpt of how I remember that class going:
Professor Shadow: Here is a Drankatopher (or some other rock that sounded like a spell from Harry Potter) Sediment. It’s is distinguishable by it’s color and grainy blah blah blah blah blah.
Me: Excuse me, sir. I feel dead inside. May I be excused?
Professor Shadow: Here is a Craewyonianite. If you will notice it looks exactly like every other rock I have shown you. Rocks are rocks. Can you believe I’m getting paid for this?
We never took tests or wrote papers. We just looked at rocks until they all looked the same. I was never able to figure out the difference between any of them — nor could I fake interest in it. I got a C- in the class — which I think was a very generous mercy that Professor Shadow showed me. After spending class after class with rocks I just surrendered to the idea that I would ever be able to identify them by their characteristics or pretty names.
They were just rocks…
and my feelings about Autism are just feelings. Undefined and raw. They can’t be contained to single words like grief, sadness, or happiness. Sometimes the emotions come in pairs — but most of the time they arrive in a messy octagon. Pain doesn’t come without healing and hope in tow. Courage doesn’t show up without it’s buddy suffering. They are all connected. I don’t waste time cataloging these feelings in a worksheet — I just let them come and go as they please and in any form they want to.
Just like heartbreak or hope doesn’t solely represent my feelings about Autism, neither does the color blue. Autism is too diverse to be labeled with one single color. Autism is also purple, yellow, green and red. Autism is all colors as it is all emotions. If anything, Autism’s color should be plaid. Autism is too complicated of a thing to be boiled down to one color or one underlying feeling. It’s rich with colors and emotions. They are all there.
The woman couldn’t imagine how I feel. Nobody can — not even me.
So, yes, my hair may be blue, but my heart will always be plaid.