Disney is a lot of things for me. Sometimes it’s relationship. Sometimes it’s expression. Right now, Cars is pure comfort by way of familiarity. It’s one of the only movies I can tolerate when I’m on high alert. Why? Because there is really no bad guy. Yes, I’m 26, but I’m so incredibly sensitive that even the bad guys and scary situations in Disney movies are too much for me when I’m overloaded. My other choice, which was on before Cars, was a nature documentary… no bad guy makes for no big emotional response makes for safe viewing, even now.
The very thought of communication has me about to go over the edge. I had to call my mom for a quick question, and I thought I’d throw up. The words are stuck. My email is closed, and I had Facebook closed, too. I put it back on but the moment I got a message, the throwing up feeling came back. It’s been a long time since I’ve lost my words like that.
And so, I’m caught. Typing is overload, yet, if I don’t type to you now, the experience will have passed and it is not one I can recall at will. If I don’t type to you now, I’ll lose my chance of saying things that must be said.
I shared a post on my blog today that related just how important it is to be careful how we talk about autism, just how easily our kids pick up our perspectives, how easily they learn to hate their very selves, their innocent selves, when we say we hate their autism. Someone commented on the post that I need to learn to accept others’ feelings, that my way isn’t the only way, that she doesn’t hate MY autism because I am high-functioning (which isn’t necessarily true at all times) but that she DOES hate her son’s autism because it robbed him from her.
She wasn’t looking for discussion or for me to change her mind. She didn’t care that there is a way of looking at autism and life that will make things much better and brighter. She didn’t even care that her beautiful boy would grow up to hate himself because of her perspective. Nothing I said, nothing anyone could say mattered to her. She just wanted validation.
I get that. We’ve all been in a place where we express ourselves, seeking only a listening ear, but we’re met with mind-changers and that’s not what we wanted.
But her words struck me on a deep level. I wanted out of my own skin. I wanted to lay down my hopes and dreams of changing the world’s ideas about autism and give it all up and crawl back into a hole where I keep to myself. In that moment, the level of ignorance I realized I face outweighed my passion and ability to change it. You win, world. I am surrounded by hate, hate, and more hate. Hate, with qualification (“it’s not YOUR autism…”) is still hate; it’s not about accepting someone else’s feelings, it’s about refusing to accept hatred for a person’s, especially a child’s, way of being. No, I will not embrace hatred.
I can point you to writings by autistic people whose autism expresses itself in all sorts of ways who are glad they are who they are and do not separate their autism from their person-hood. I can prove to you that functioning labels are horrible, unhelpful things. I can tell you all the struggles I’ve had and I can show you that when you dismiss me as “too high-functioning” to be able to have a seat at the autism table, you also, in the same breath, dismiss my nonverbal friends has “too low functioning” to have anything to say. I can also tell you that my ability to type pretty words and big thoughts says one thing about me: that I can type pretty words and big thoughts…. that I struggle to cut my own food, cannot cross the street or a parking lot without help, and have little concept for time or managing finances.
None of it matters. If you are dead set on remaining in your negativity, there is nothing I can say to pull you out of it.
But do me a favor, and keep your nasty, negative, hateful comments to yourself. Don’t bring me down with you. I may be a voice of advocacy, but I’m also autistic… which, for me, involves being highly sensitive and not the strongest communicator and less than super social. Sometimes, my own autism makes me less of an advocate. People seem to think that being an advocate somehow means I’m less autistic. Not true.
So, I may take a breather, but I won’t stay down long… Cause, damn it, there’s a world to change out there and I won’t rest until it’s changed. If I allow myself to be caught in the mire that is hatred for people’s differences, then I get so overwhelmed by it that I lose my sight for what matters. I cannot engage with people who only want to spread negativity. It can be so hard for me to have compassion for the hurt that’s beneath what is expressed as hatred, but that’s something I would do well to remember. People don’t hate because it’s fun to hate; they hate because, at the root of that hate, there is deep hurt. Respond to their hearts, not their anger.
I can take on the world–if ever there were a match, it’d be me with all my determination and spunk and gumption–but I will not put the responsibility of changing a single person on my shoulders. I can change the world, but I cannot change an individual person. I don’t have that ability. That is between that person and God. She has to get to a place of getting it. I, too, was once lost in mounds of negativity, and I was not able to find faith and hope until I reached such a rock bottom that God was my only option, and He then became my hope and my source of joy. I cannot fault a parent who is going through so much difficulty for not being in the same place I am. Not everyone travels the same journey, and not everyone finds hope in the same way and certainly not at the same time. We have to respect each other’s experiences. Next time, instead of engaging (when all they want is validation, anyway), I will step back, wish them well, and say a prayer that their hearts and homes will be happy and that they will come to see the light..
…the light that is autism acceptance, in all its spectrum of colors and expressions and angles.
It’s a beautiful thing, and I’m sorry on so many levels that so many people are missing out on it.
A wise autism mom and autistic mentor told me:
“And you need to know–you may be the seed planted. But it may not be your place to be the water, the sun or the wind. So trust that you did your part.”