I remember the first time I saw an unhappy comment from someone about my blog being written by an “autism parent”. Surprisingly, the anger didn’t come from a troll or someone who had an issue with autism. It actually came from a member of the autism community. This person took me to task for having the nerve to say, well, anything.
What right did I have to talk about autism without having autism myself? My son may have it, but that’s his thing and not mine. As the person pointed out, “how sad is it that an “autism parent” has to take their child’s condition and put it as part of their own name?”
It was a misguided and insulting statement, but here’s the thing, I kind of get it. I understand the apprehension that comes with reading the words of a mother of father, both off the spectrum, as it relates to a silent third party, who actually does have autism. I know how people on the spectrum have long been misunderstood, misrepresented, and overlooked. I love one of them. For those who feel that they are generalized and marginalized, it’s something that can cause the defenses to spring up.
While I do “get it”, though, there’s one thing I have to be clear about. I won’t apologize for writing about my son and I won’t stop sharing the story of who he is with the world.
My boy is non-verbal with, what some call, “severe autism”. It is most likely going to be a chronic condition that requires some sort of care for the rest of his life. He will never need to “come out” to his friends about it. He doesn’t use words to speak and he doesn’t grasp a lot of concepts that others might. What autism means to him is different than what it means to someone with the capabilities to leave an angry social media comment. The same people railing against “autism generalizations” have no problem lumping my child into their same group without knowing a single thing about him and the sea of differences that separate them.
I know lots of things about my son and I know that, as of today, he can’t tell you his autism story. He can’t tell you who he is or share the things that makes him special. I can, though. So I do.
The story is actually straight-forward. My son is the greatest boy I ever met. That’s not a flowery phrase or some sort of way to trick myself into believing it. It’s legit. While the outside world might get stuck on his different needs or the things he doesn’t do, I love him for the things that he is. It’s on me to tell the world about it.
Laundry lists of his good qualities sprinkle throughout all of my posts. While I might talk about various struggles that we overcome together, I never sway from the fact that Lucas is a unique brand of perfect. His personality is individual and beautiful. In many ways, autism is a big part of the reason why. It’s the whole point of what I do here. I tell the story he can’t. I owe him that.
Tales of autism aren’t reserved solely for the people who can post on Facebook or compose strongly-worded letters to the editor. For non-verbal people in the community or those without the means to express their feelings, the opportunity to share who they are with the world is just as important. That’s where people like me and other “autism parents” come into play. If my son can’t tell you about who he is and how autism affects his life, someone who loves and knows him should.
I love him. I know him. So, I do.
For years, Lucas was behind closed doors. It’s not that we were embarrassed or ashamed. It just worked out that way. He didn’t trick-or treat or care about playdates. He just wanted to sit home and do his thing, so we let him.
As time went on, though, I not only wanted to share him with the world, but saw the importance in doing so. I started to realize that many didn’t fully understand the place he held in our lives. The thing that tipped me off was this one statement that many parents to special needs children are well aware of. It usually comes about when someone invites the family somewhere, but gives you an out before you’ve even answered.
Oh, it’s OK if you can’t come. I know how hard it probably is with your son.
That sentence, uttered by so many well-meaning friends through the years, is the one sentence that told me I needed to speak out. It was the sentence that showed me the world made assumptions about Lucas that, while based on personal observations, wasn’t true.
Lucas wasn’t hard to bring out. Sure, there were tough days, but we all have them. It told me, though, that they didn’t really know him. I had kept him away so long that the world guessed things about him and how he impacted our lives that were, well, simply not true. That’s where this blog came from.
For that reason, this “autism dad” will tell his son’s story as long as possible, while always respecting his privacy and treating him with respect,. My goal is to never portray myself as a superhero, Warrior, or anything other than the dad to two of the best kids on Earth.
One day, maybe he’ll be able to tell his own story and, if and when that happens, I’ll hand this blog over to him. Until then, I’m going to share him with the world, because the world needs to know about a wonderful kid like this.