The Power of Embracing What I Don’t Know As an Autism Parent
I’m a reasonably intelligent man, but I know nothing. I’m simply a dad, only five years into my adventure as an autism parent, trying to learn and share my observations. That’s a good place to start if, like me, you want to be involved in healthy dialogues on autism. We can’t be clinging too tightly to ideas and acting like we know it all. But, we can’t keep our ideas to ourselves either.
As a parent of two autistic boys, every day feels like a struggle to find the perfect answer. I want to appropriately direct their behavior and be productive while respecting their identity and creating happy, comfortable lives for them. How the heck do I do that?
Which therapies are appropriate for them and at what point are they being pushed a bit too far? If I believe there’s nothing “wrong” with my sons, which I surely do, can I justify rigorous strategies to change their behavior? Where am I supposed to draw the line? Add this to the regular moment to moment stresses of being an autism parent, and it’s a wonder my brain hasn’t exploded yet.
I find myself on the Internet looking for answers, where, if you spend even a small amount of time reading articles and lurking in comment sections, you’re exposed to all kinds of opinions on autism. Knowing nothing, as I do, I’m able to approach each point of view with an appropriate naiveté.
People are remarkably good at producing compelling opinions based on their very specific experiences and the resulting impact on their lives. Most perspectives are easily understandable when given consideration.
A remarkable thing about today’s technology is it provides people, in particular, those who were previously unwilling or unable, the option of expressing themselves and sharing experiences. From an autism perspective, it could even mean a non-verbal individual finally having a voice in conversations that are hugely significant to them. It’s incredible.
I’m in the camp of exhausted parents, who also have a right to a voice here. Since it’s the most important job any of us will ever have, we’re passionate and should be.
A huge difficulty arises in these conversations due to the drastic variances in levels of functioning on the spectrum. But what if the solution is simple? What if we’re trying too hard to know everything with certainty? It seems reasonable to think every situation is unique and deserves to be evaluated on an individual, moment to moment basis. Willing and able autistic people can, and should, champion their cause.
If they do, it’s extremely important that the “neurotypical” world hears them. Their perspective could be a huge part of what enables further understanding. Imagine having something that’s central to your way of existing, something you identify with and take pride in. Wouldn’t it be annoying for people that lack your intimate familiarity to treat it as an issue, something to actively work on improving?
There’s something to be said for unique thinking. Without attempting the impossible task of retroactively diagnosing historical figures, it’s hard to ignore that many great innovators have shared some of the traits we’ve come to identify with autism. Pretty reliably, the people who drive our society forward are people who think differently.
This, even with the severely limiting lack of social acceptance these individuals often experience. I must acknowledge here that this isn’t an all-encompassing statement on the genius of autistic people. I, too, roll my eyes at the Rain Man stereotypes. It’s only a reminder of the simple notion that being different, even to a significant degree, can be good.
The next natural question, then, is why is it usually our goal for ourselves and our children, consciously or not, to do everything we can to integrate into society to the point of making ourselves invisible? Autistic or not, we need to work on this one. Some theories suggest that primitive survival strategies from thousands of years ago are still at play.
In an ancient setting, where individual survival meant achieving complete acceptance in a tribe, maybe this instinct would be useful. But our world just isn’t that way anymore, and unfortunately, we’re left with unnecessary barriers preventing most meaningfully different things from flourishing.
In this context, it’s not farfetched to think of autism as a beautiful genetic difference that we haven’t yet figured out how to accommodate in our world. So embracing diversity should be like, duh, no brainer. But there’s a scenario when someone, fighting this righteous cause, can take it too far.
We have this one reality within which to function. When our reality, as a result of neurological differences, becomes an intense daily struggle to accomplish things that most are fortunate enough to achieve without effort, it’s hard to wear the rose-colored glasses.
Some argue that implementing therapy programs for autistic people is wrong because it seeks to change them, thinking maybe the goal is to work towards “fitting in.” That’s quite a flawed perspective to me, and I believe it’s almost never the case.
People are getting their kids into therapy because genuinely great things can be accomplished. Children may learn a way to communicate their needs when previously they would have resorted to violent tantrums. They may achieve satisfying new levels of independence that once seemed impossible. They may even decrease self-injurious behaviors. With so many cases showing improvements in these areas, for anybody to automatically equate any type of therapy to abuse is absurdly unfair at best.
As long as we always consider the specific nature of our children, we can stay on track and do right by them. Operating within this mindset, there’s nothing I wouldn’t do to create a better life for my boys. I believe in autism parents. There’s nobody who knows their children better or cares for their children more, and so, there’s nobody more capable of steering the ship.
It’s their family’s unique experiences that will guide them. They may not always know what to do, but there’s nobody more capable of figuring it out. That’s where I find myself, and acknowledging my lack of knowledge is the perfect starting point.
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It’s tempting for humans to think they have the answers. But when you think about it, that’s impossible. Are we so full of ourselves that we think we’re the final product of evolution and innovation? Do we know enough to make a grand statement on autism with any certainty? I always remind myself to take a giant step back and look at the big picture. Step way back. Doing so can make the little disagreements within the autism community seem silly and unproductive.
Our understanding of the brain is in its infancy. Science and technology will inevitably take us places we can’t fathom. Earlier, I mentioned how advances in technology have completely overhauled our ways of engaging with those on the spectrum. Fifteen measly years ago the Internet wasn’t developed to the point of providing autistic people a platform.
There were no personal tablets giving the masses a reasonably accessible communication device they could take with them everywhere. Fifteen teeny tiny years. What will the world be like in another fifteen years? What about one hundred years from now, or longer?
Conceding our lack of knowledge here can either scare us or present us with an opportunity for serious optimism. The world may not be ideal for an autistic wired brain right now, particularly for those who are lower functioning. Yet we still observe those on the spectrum displaying enthusiasm and happiness when engaged in activities that suit them. If we consider happiness a key measure in living a fulfilling life, who’s to say we won’t see advancements that begin to exponentially improve our understanding and engagement with autistic people. It seems pretty likely to happen.
To some, this could all have just been barely organized ramblings. To me, it’s a mentality that provides a foundation on which I can build a tower of autism understanding that won’t crumble when I replace a piece here or there. My entire life the world has been teaching me that being unsure of myself or changing my mind is a show of weakness.
At this point, I’m quite sure it’s the opposite. Flexibility of opinion and open-mindedness are qualities that can take the autism community where it needs to be. That’s why you won’t get any concrete answers from me. I’m just a dad trying to figure things out. I know nothing, and it’s fantastic.
This article was featured in Issue 74 – Every Voice Matters