Thoughts From Six Feet Away: Preacher or Teacher?
It never fails – I will get texts a few times a month from my daughter, proclaiming that particular day “National Whatever Day.” I alternate between being impressed that someone takes the time to devote a day to a certain thing (like macaroni and cheese or the color pink), to being cynical that someone is just making this crap up. This is the newest iteration of the trend that started with having a colored ribbon for everything. I’m glad that more people care about causes and raise awareness for things that matter to them, but at times it can be overwhelming.
That being said, we just finished the month of April, and it is a month that will always be special to me because of Autism Awareness month. Like every year, I turned the lights on my garage blue and bonded with the parents of other kids on the autism spectrum. My son was officially diagnosed about ten years ago, after years of suspicion. It was a tough road in the beginning, but he is getting ready to enter his senior year of high school, and I couldn’t be prouder of the man he’s becoming. When he was younger, the diagnosis seemed to be an embarrassment to him and never spoke of it. Then, while on a walk with him a few years ago, he began to ask questions, seeking to understand why his mind worked differently than others. I gladly told him what I knew, both as a physician and my experiences in raising him. You know how they say you learn from your mistakes? Let’s just say I had an immense amount of wisdom to share.
My wife and I never wanted to make a big deal out of the diagnosis – too many grow up with a label, and they use it as a crutch to avoid the disappointment that comes with striving for more in life. We are big believers in succeeding despite your obstacles, rather than failing because of them. In addition, it was important for him to realize that his mind works differently, but that doesn’t mean he’s any “different” than anyone else. But we had to embrace the reality that the label was necessary to obtain services and to be able to structure a learning environment that maximized his chances for success. To all the parents of children on the autism spectrum – it may be a struggle at times, but it’s worth the effort.
If I have a concern, it’s that some of us go too far in this age of activism. We become so invested in our cause that we vomit our “enlightenment” all over others, especially those who may not be as informed as we are. And in the end, our misguided efforts prevent others from hearing our message. It’s like going to the park to feed a swarm of pigeons and running at them, loaf of bread in outstretched arms screaming, “WHO WANTS SOME FOOD? TWEET, TWEET!!!!,” You’re not going to get many takers with that strategy – even pigeons aren’t that dumb! But that is exactly what some of us do, and we wonder why our message isn’t gaining any traction.
It all came to a head for me this year. Did you know that the puzzle piece is no longer a symbol of Autism Awareness? I do, thanks to someone telling me that “people aren’t a problem to be solved.” While I understand and agree with the sentiment, it’s a freaking puzzle piece. A symbol. If the “Ribbon Movement” has taught us anything, it’s the power of symbols. And lately, you cannot boast your pride at being the parent of a child on the autism spectrum without being accused of making it “all about you.” There is a difference between pride and braggadocio, and some would be well served to know the difference. In the process of raising our son, I haven’t bathed myself in glory – I’ll be the first to admit that. But my wife has been a bona fide rock star. Her tireless work with my son, and her patience through the early years, has been the stuff of legend. I’ve encouraged her repeatedly to write a book about her experiences because it’s been inspiring. Don’t believe me? We had my son tested before he started school, and the quote from the assessor was as follows: “Diagnostic criteria of Autism Spectrum not met. Efforts of the mother have made diagnosis difficult.” In other words, this lady did such a good job working with her kid that we, as professionals, can’t do our job. I’ll say this, to all the parents of “spectrum kids” out there: be proud of what you’ve accomplished. Risk being called a narcissist because damn it, you’ve earned it. Every meltdown you’ve endured, every time you make pizza for the hundredth time because it’s the only thing your kid will eat, every less-than-ideal circumstance you’ve endured just to live to fight another day, you own that shit. And lest we forget the “concerned citizens” among us, who have an abundance of ideas on how we should be raising our kids. I remember taking our son to eat out when he was three. It was December, it was cold, and no amount of logic was getting him to put on his coat. His mother was not there to utter the magic words to get him to do it, and I was frustrated. I grabbed him in one hand, and his coat in the other, and walked to the car. Two busybodies were exiting the restaurant behind me, and one of them whispered (at least they claim they’re whispering, even though you can ALWAYS hear them), “That boy should be wearing a coat.” Before I could stop myself, my animal brain took over. I turned around and threw his coat at the shocked biddies and yelled, “Then YOU put it on him! Because I’ve been trying for the past ten minutes! In fact, we would already be in the car with the heater on, but you couldn’t mind your own damn business.” I’m not proud of that moment, but it illustrates that those of us who know your struggle will know the truth. As they say, real recognizes real. And to those enlightened minds out there, it’s important to remember that awareness compels us to be a teacher, not a preacher. And while you will have adversaries in your fight for your child, it’s important not to alienate your allies in the struggle. We all have something to learn, but none of us like to be lectured.
Sorry about the rant, but it’s something I’ve desperately had to get out. To those on the autism spectrum, I hope the month allowed you to celebrate how differently your beautiful mind works. Educate others and be proud of who you are. And to their parents, I raise my glass in salute. I know your struggle, and any pats on the back (including from yourself) are well-deserved. Thank you for reading my words. Please, be excellent to each other, and…