Autism is strange in its ability to teach. Sometimes it seems like autism came into my life (through my wonderful daughter) just to make me grow in the areas I most needed to. To name a few things I suffer from: envy, self-pity, a short-temper, mood swings, impatience and fatigue. They are all put to the test on a daily basis. I could (and probably will) write a blog about each one. But today I want to write about one way autism is forcing me to change- caring about what other people think.
I have always been sensitive to how others judge me. Still, this hasn’t necessarily forced me to conform. In fact, in many ways it caused me to rebel. I felt angry in my teen years about how misunderstood and judged I felt. As a response I did whatever I could to not fall by the wayside of the status qou (be it purple hair and black eyeliner or speaking out in class). But that doesn’t mean it didn’t hurt me that I felt so misunderstood by my peers. Since high school I have grown and realized that fighting back doesn’t really help my cause and that the hurt I feel from others’ judgement doesn’t sting any less. I have to admit, it has helped me to move from Orange County to San Francisco, where people tend to be more accepting.
That said, I have always been somewhat of an outcast. Having people bully me in school should have prepared me to be thicker skinned in my adult life. Instead, I think it made me more sensitive. As I got older, I adapted and learned how to be accepted by my peers in order to avoid such rejection again.
But now with autism, I cannot rebel. I cannot conform. I have to find a way to just say F them.
This isn’t easy for me. It doesn’t help that I am 22 and my husband is 21. As it is, people are staring, thinking “How old are they?!” I always figured that my parenting abilities would speak for themselves and that my daughter would clearly be well-behaved enough to have people think twice about judging us.
WRONG. Life wasn’t going to let me get out of this one very easily. It decided I needed to actually deal with this. It gave me an autistic daughter.
So here’s where my story starts: We were at the zoo this weekend and D (I’ll call my daughter that) wasn’t having it. We should have known better than to take her during her nap time, but she usually does fine skipping her nap if we take her somewhere she likes. I assumed (wrongly) that because she loves animals so much, the zoo would be a place she liked. Needless to say, the entire day was a disaster. From the get go she was hair-pulling at every turn. I waited with her at the entrance while my husband went to use the bathroom. She wanted to climb on top of the tables and I wouldn’t let her. BAM, a hair-pulling tantrum started. We just recently started dealing with this by completely ignoring it. That means no blocking from us unless she is right next to us and we can pretend the blocking is an accident. We’ve learned by now it is strongly reinforced by any form of attention. The behavior nearly disappeared completely until one day her smart little brain realized if she did it from across the room I would come over and block her. Now she does it to get me to come to her and try to meet her needs. Meaning, I must act like I don’t even see it if I have any hope of it diminishing. I should have put it together that trying this new method in a new situation during nap time would be a catastrophe, but no way, I missed the jump on that one.
So here we had little D ripping her hair out a couple feet away from me (22 year old too-young-to-properly-raise-a-kid mommy according to bystanders) and me pretending to check my cell phone. One man point-blank stared me down with disgust. It killed me. I wanted to break down and just bawl at that moment. I wanted to scream at him, “Do you have any idea how hard I work?! Do you have any idea how difficult it is to do this?! This is the last thing I want to have happening! I want to stop her from doing what she is doing right now, but I can’t, it will only make things worse in the long run!” I wanted to explain myself. Instead I calmly said, “she has autism, please do not stare.”
The worst thing is, even telling him that was an explanation he didn’t deserve. I don’t think D wants me telling every gawker that decides to stop and rubberneck her personal struggles. It isn’t any of his business, and I should know well enough that it doesn’t matter what he thinks. I can’t help this urge to want so desperately to be understood. To have people know my story and realize I am a good mommy. That I give everything I’ve got to my little girl and more.
Life for some reason is teaching me that I don’t need the validation of strangers, as desperately as I may want it. That I know the truth and that is enough. That those people who are staring and judging and hating, just aren’t playing with all the facts. That I should just let it go.
I don’t know how long it will take for these moments to stop hurting me. I do know that I will have plenty of opportunities to learn to let it roll off my back. I hope it happens sooner rather than later. It is so hard to not feel so incredibly pained by these people and their lack of understanding. I can only looked towards the future and pray for thicker skin to show up soon.
Luckily I have a husband who is the yin to my yang. He doesn’t struggle in the areas I struggle and vice versa. It helps a lot to have him there saying “so what?!” and laughing it off. I know I help him too in my own ways, but I admire him especially in this regard and can only hope to achieve this ability.
Until then, if there are people out there who judge parents like me, please do your part and think for one second, “maybe I don’t have the whole picture here” instead of passing such hateful energy onto to our already overloaded pile of stress. I’ll be working on learning to not care what you think anyway.
I’ll end with this quote: “Is it so bad, then, to be misunderstood? Pythagoras was misunderstood, and Socrates, and Jesus, and Luther, and Copernicus, and Galileo, and Newton, and every pure and wise spirit that ever took flesh. To be great is to be misunderstood.” -Ralph Waldo Emerson