I’m a firm believer that you can’t advocate for a group without letting the very people you’re trying to support lead the way. My son is the autistic one. He calls the shots (in his own way). I’m just the support team.
I’m well aware that there are things he goes through that I’m most likely never going to be able to identify with, even though I grew up with Sensory Processing Disorder and developmental delays myself. That’s why 9 times out of 10 I not only welcome but seek out the wisdom and experiences of autistic adults. I know they have a perspective on what it means to live with autism that I do not and cannot have.
At least I crave and seek out those opinions right up to the point where someone decides they know better for him than I do, and I should just keep my trap shut.
Which brings me to the part that actually does enrage me about some elements in the autistic community.
I am so damn tired of strangers who don’t know a thing about my son as a person calling into question my love for him and dedication to helping him find a way to live his best life just because I don’t share his neurotype. People who haven’t been with him through every smile, tear, triumph, and setback.
That’s like me telling a single mother that she can’t possibly know her son like I do, even if I’ve never met him. She doesn’t have a Y chromosome, so she just needs to step back and let me tell her what’s best for him.
I apologize, but every so often a nerve gets touched. It’s like someone pouring gasoline all over my worst insecurities and then breaking out a flamethrower.
You see, I am constantly questioning myself over whether or not I’m doing right by my boy. I know I’m going to make mistakes. I know the road to Hell is paved with good intentions, and that odds are better than even that I’m going to make a wrong move thinking it’s the right one.
That’s a reality that comes with parenting whether you’re raising a child that’s autistic or not.
All I can do is watch him and listen to him. Be willing to let him call me out when I do screw up. To love him, respect him, and trust him to figure out what he needs to live his own best life. Then it’s just a matter of figuring out how to help him get whatever that may be.
We all want what is best for our kids. We may not always know what that is.
Understand, I’m not letting NT parents off the hook here. I’ve sadly seen too many instances where autistic voices have been disregarded or shouted over. Too many times where an autistic child or adult has overcome great difficulty and managed to clearly voice their discomfort over choices being made for them, only to then be hushed or ignored outright.
It’s pretty damn counter productive to say you’re fighting for the community to have a voice just to turn around and stifle that voice the moment it’s trying to make itself heard.
That said, there’s no pleasing everyone, and even between autistics what works for one won’t work for another. We need to be able to pursue different approaches SO LONG AS those approaches honor and respect our children.
Especially without being branded an enemy to the cause, because we see things differently on a matter.
To that end, I always try to ask myself these three questions when advocating for my son, and I encourage other NT parents to do the same:
– “Is what I’m doing and saying respecting what he’s shown me he’s comfortable with?”
– “Am I embracing who he is and acting in a way that shows him he should do the same? That encourages his self-worth?
– “Will this help him find his own voice (in whatever form that takes) and help him with what he needs to live his best life on his own terms?”
If we can say “yes” to those questions, then I think we can show our autistic kids and others in the community that we are on their side, we do respect them, and that the last thing we want is to be the enemy.
Even if we do disagree from time to time.
The autistic perspective can help us understand what our kids are living, and what they need to live better. The NT perspective can help them get what they need in a world that wasn’t designed for them, and needs to change.
Working together can help us accomplish so much more for the autistic community.
That’s something we should all be able to agree on.