My Coming Out With Autism

April 2, 2013

I hadn’t planned to write about this today — it hadn’t even crossed my mind until a friend made a challenge on his Facebook page that one shouldn’t merely share a graphic to show support for World Autism Day, one should share how one has been affected.

I have autism. To be more specific, I have what used to be called “Asperger’s Syndrome” but is now classified as “High Functioning Autism.”

For the record, I never discuss AS and rarely tell people that I have it (though I have written about it before). Not because I’m embarrassed or ashamed in any way (because I’m most certainly not), but because I’m not sure it’s relevant to anything at all. I mean, I love to eat BBQ but that’s rarely something that I openly share with people when I meet them for the first time.

There are tons of misconceptions, inaccuracies and downright falsehoods about AS and I am not qualified to address them. I can only state that Google is your friend; there are many excellent resources on the web for anyone who is interested. I only feel qualified to speak about my own life.

Growing up I was always the smartest kid in the class, usually by a mile. My parents enrolled me in a very expensive private school beginning in first grade after 3rd grade reading and math classes bored me… in kindergarten. I was also the kid who was the weird loner, the one who had no interest in interactions with fellow classmates and who usually took a book out to the playground at recess. I nearly always ate lunch alone with my nose stuck in a book (probably a different one).

I didn’t really have friends and didn’t much care about having them. My friends were books — or more specifically, the characters in them. I found my comfort zone in the stories, being whisked away to different lands and planets was a wonderful way to avoid the real world. It just didn’t occur to me until years later that all of my favorite stories were about loners.

Having AS doesn’t make me handicapped or dysfunctional (nor does it mean that I can speak Klingon). It just means that my brain is wired completely opposite of yours. One huge benefit (to me) is that I think in pictures .. literally. There is a constant movie running through my mind at all times and everything is stored as an image. For example, when I read a book I see the words on the pages transformed into images in my mind. History is a passion of mine because I can actually see Abraham Lincoln giving the Gettysburg Address; the stories actually become vividly real to me. It also means that I am terrific at recognizing faces but embarrassingly bad at remembering the names attached to them.

For me the wonderful thing about having AS is that I am astonishingly good at analyzing people. You see, I have spent an entire lifetime trying to figure you out, reading your body language, your facial gestures and the tone of your voice in order to better understand you. I often describe having AS by comparing it to being Captain Kirk from Star Trek and suddenly being beamed down to a new and very strange planet. Everyone on this new planet looks and sounds like me, but I don’t feel connected to them/you at all. Those normal intimate human bonds which seem normal to everyone else don’t really happen for me. 100% of my interactions with other people are a learned behavior.

Another positive for me is the simple fact that I do not care what others think of me. I’m the guy who will say the crazy things you are thinking because I am not concerned with anyone’s approval. I don’t desire or seek anyone’s approval — I’m perfectly comfortable in my own skin. While I admit that this has it’s drawbacks, it’s the one aspect of my personality that I wish I could give to you. One can only imagine what this world would be like if more of us cared little about the approval of others.

The down sides to having AS are too numerous to mention, from the incredible mood swings to being prone to depression, but those issues have been significantly mitigated for me since actually being diagnosed (only a few years ago) and learning about why I am this way. It is simply much easier to see the warning signs of a potential problem before it reaches the nuclear phase. The one difficulty in all of this is that I am constantly “on”, meaning I am constantly in a state of hyper-awareness, always monitoring my body language, facial expressions, voice tone, word choices and gestures as well as doing the same for everyone around me. It is much more exhausting than I am describing and requires an occasional quiet day when I can simply turn everything off and relax my mind. I rarely get a good night’s sleep, generally only a series of hour-long naps and it’s common for me to get up and do some work at 3 or 4 am.

I tend to be very logical, very blunt and extremely direct, though I’ve learned how to be more diplomatic as I’ve gotten older. Remember, 100% of my interactions with others are a learned behavior for me; I have no instincts when it comes to human behavior. My problem has always been that the learning process has often been a very painful one, with a trail of broken relationships, anger and hurt feelings left in my wake.

For what it’s worth I wouldn’t change a thing. God, in His infinite wisdom, created me this way, and did so because I was created to serve Him. I do not question His wisdom and happily accept myself just the way that I am. I just wish that I could count the number of toothpicks before they hit the ground.

UPDATE: So, yesterday I wrote this post purely as an intellectual exercise thinking that it would be read by my wife and a few close friends. To say that is an understatement would be like saying Michael Moore is carrying a few extra pounds. This post took on a life of its own, going viral through social media in a truly organic process. I am beyond overwhelmed, but please allow me to share a few extra thoughts.

To begin with this post is riddled with typos and grammatical mistakes, nearly all of which I am aware of. In my professional life I not only have editors to help with those things but I often take days to compose a post. I wrote this in less than 10 minutes — one draft with only minimal editing for spelling. I wasn’t even sure that I would actually publish it, but once I did the magic happened. I decided to leave the errors in order to pay tribute to the raw nature of what I wrote. This was essentially the equivalent of a journal entry, only posted online for the world to read.

Secondly, I am truly honored that so many people took the time to contact me yesterday. I am still sifting through hundreds of emails, tweets, texts, Facebook messages and comments and the like. If I haven’t gotten back to you please bear with me. I promise that I will.

However, I do not feel comfortable being put on a pedestal as any sort of advocate, for Autism or anything else. I’m just a dude with a website (and a barely used one at that), a twitter feed and a Facebook account. I have no professional training in psychology or medicine of any kind and cannot make declarative statements about anyone else’s Autism but my own. My sharing a tiny part of my own journey of redemption should not be taken as a signal that your child’s or your own Autism can be cured or improved. I leave that up to the experts. I will say that it does get easier with age as childhood through early adult years are utterly horrific for people with Asperger’s. It also gets much easier when you understand what you’re dealing with. I can only encourage you by saying each and every one of us is beautifully and wonderfully made and He has a plan for every life, sometimes one which is beyond the comprehension of our simple human minds.

I also failed to pay tribute to my unbelievable and amazing wife of nearly 15 years, mainly because I really didn’t plan what I was writing and left TONS of things out. I need to rectify this error and make it clear that whatever journey I’ve been on with Autism has been made possible by the extraordinary patience, support and encouragement of my wife. She has been the one who has borne the brunt of my failures, frustrations and meltdowns and handled it with grace. I am who I am in large part because of her.

My parents taught me the meaning of unconditional love and fought for me every single day of my life. I learned about hope and redemption from watching the journey they’ve been on themselves and couldn’t be prouder to be their son.

Finally, allow me to get to the meat of this update: I am so honored and humbled beyond my own limited vocabulary by the amazing feedback I’ve received. I truly am. Yesterday was such an overwhelming day that I ended it both exhausted and on a natural high. Each and every one of you reached into my soul yesterday and I will never forget it. Thank you.