“Do I hate autism?”
I found myself awake one night wrestling with that question. It had been a harder evening than most, one wherein my son had dealt with way too much sensory overload during a trip to the mall. This resulted in a meltdown that was far more explosive than what his mother and I were used to. All in full view of an alternatively pitying and judgmental public. It lasted throughout the course of getting him out of the mall, into the car, and back to the safe space of home.
There was non-stop crying, screaming, and violent jerking the whole time. It took a good long while for him to calm down enough to get in the house, up to bed, and eventually to sleep.
I was exhausted. I was frustrated. I was scared. Any parent of an autistic child will tell you how much a scenario like that can take out of them. How it’s followed by episodes of worrying about the future and your ability to raise a child who faces so many challenges. That’s when that question pops up, and you may find yourself wondering what life would be like if the child wasn’t autistic. When you start to ask yourself whether or not you actually hate their condition and all the stress, anxiety, and struggle that comes with it.
So there I was, asking myself, “do I hate autism?”.
The answer is no. Absolutely not.
My son is a beautiful, sweet, amazing little guy who is without question one of the finest things I could ever give to the world. He loves totally, unconditionally, and views the world with a sense of wonder that is beautiful to behold. He just happens to be autistic. That’s part of who he is. The way he takes the world in informs the person he is and the person he will become. A person I love more than life itself, and that I am so very proud to call my own. He would not be that same person if he wasn’t autistic. So no, I do not hate autism.
How can I say all this when I was just groaning on about all that frustration, struggle and worry? Very simple. Because it isn’t autism in and of itself that I hate.
No, what I hate is how much harder the world makes it for him.
I hate the ignorance. The idea that my son is somehow lacking because of his condition. That anything is better than having to deal with a child who is autistic, including the serious health risks that come with non-vaccination or “home treatments” that actually include the ingestion of household chemicals that people know damn well are poisonous. All in an effort to “cure” a child that isn’t sick.
I hate the judgment. The way people stare at my boy when he does get overwhelmed and lashes out, judging him for one bad moment, jumping to the conclusion that he’s just having a tantrum. That my wife and I just don’t know how to raise a well-behaved child. Or worse, that because he is autistic, he poses some kind of threat to their own children, either physically or by somehow “spreading the disease” in a way that will slow their own child’s development.
I hate the restriction to services. Trying to get access to services that will assist my child and help him develop the skills he needs to live as full and independent a life as possible frustrates the hell out of me. It is a never-ending bureaucratic merry-go-round that I am thoroughly convinced serves no purpose other than to deter applicants to the point that they eventually just give up. Any parent trying to get their child Medicaid can tell you the horror stories.
Those are the things I hate. Not autism.
In the end, I want the same thing for my boy that every parent wants for theirs; for him to have every opportunity to live his best life. The only difference is that my child is trying to do that in a culture that isn’t designed for him. When he’s having a hard day, and I think about all that, I shake. Not because of how hard it is on me or his mother, but because of how hard it is on HIM.
That’s also when I snap out of my self-pity and remember that HE is what’s most important. That understanding what being autistic means to him, and offering unconditional love and support is how his mother and I can help him best.
No matter what life may choose to throw at him, we have a new opportunity every day to show him that despite what the world might be trying to tell him, he is worthwhile, he is loved, and he is just as good as anyone else.
Autism isn’t the enemy. How the world views it is. I hope whoever reads this will recognize that, and help me keep fighting until that enemy is nothing more than a bad memory.