Parenting an Autistic Child Opened My Eyes to My Own Identity
And to a loving, supportive community
When my son was three years old, he got kicked out of the yuppie play space where I brought him and his sister in Poughkeepsie, NY. It was a place where you could bring your kids and let them play while you worked in an adjacent room. They were planning a “camp” for a week, and my kids loved it there, so I signed them up. During that week, however, they continued to have children coming in on a drop-in basis.
My son was okay with walking into a space where another child was playing and not taking away their toys, sharing with others, and generally playing nice (which, I think, is pretty damn good for a 3 year old). What he couldn’t stomach was if he got all set up to play what he wanted to play, when no one was around and all the other kids were happily engaged doing their own thing in other spaces, and then a new kid comes into his space and wants to share the toys. When the adults tried to tell him he had to share with these new interlopers who were, after all, paying customers — he refused. When they told him he couldn’t refuse, he got angry. Then they told me I shouldn’t bring him back and refunded my money.
That same year, he was attending one half-day a week at a program in the Little Gym, staffed mostly by college students. He did not like to color and did not want to color, but on one particular day the young person leading his group told him he had to color. He said he didn’t want to. She said that he had to. He said he wanted to play with the Duplos sitting next to the coloring table. She told him if he didn’t want to color, he would have to sit still at the table and do nothing.
So he spit in her face.
When I picked him up that day, I listened to the story, which was told from the perspective that he was defiant and disobedient. I decided it was best if my son did not continue to attend.
After that, we did figure it out, and he had a great run with preschool and summer camp by a hippie day school near where my mom lives. What I learned from these two experiences is this: my son will not put up with any adult bullshit.
He does not do well with inconsistencies, injustices, lies or any dishonesty, rules that make no sense, things that have to be just so for the reason of just because. He doesn’t do well when there are no clear boundaries, when the adults in the room don’t know what they are doing, or when the adults are distracted and not engaged. If he’s in the middle of something, he doesn’t want to be interrupted (you and me both, kid). My son does extremely well with adults who understand and like Autistic children, and not so well with adults who don’t.
He is the child who will try to rescue a pregnant cat, pick up a potted tree that has fallen over (even if it’s three times his size), and make sure the baby doesn’t fall when they come down the slide. He will also growl at you if you piss him off. Every day I feel like I could not love him more, and then he shows me more of his own true self, and I fall more in love.
Sometimes his reactions are big, but he always — always — has a reason why he is upset. Once he can articulate the key reason and address it (something we learned together through this approach), he regulates himself in his own way and in his own time.
Before my son, I did not understand autism. I believed in functioning labels and that you could be “mildly” autistic. I thought autism was something to be afraid of. I thought you could “have” autism like you have a disease. I thought that it had no connection to my life or my experience. I had no idea.
Then my little one started showing that the world was quite loud to him. I was trying to explain this to my mother, and sent her a video showing what sensory overload felt like. Her response, “What’s your point? That’s what it’s like all the time.”
“Um, mom,” I said, “not for everyone.”
My mother was diagnosed as Autistic in her sixties.
A few years later, trying to figure out why my daughter was so unhappy, I started reading about autism in girls. My daughter was identified as having Non-Verbal Learning Disorder, which I and many others believe is kind of code for Autism for Girls. As I started reading about “lost women” and “lost girls,” I recognized so much in my strong-willed little warrior princess.
Once I started treating her like an Autistic child — for example, paying attention to sensory stressors, watching for miscommunication driven by literalness, being sensitive to how distressing it is to her when things change unexpectedly — she got much happier, and started blossoming in other ways, in her music, her friendships, her academic prowess, her righteous anger at injustice, and her ability to lose herself in books. Her sensory needs also became more pronounced as she got happier. I think this is because she stopped masking so much. I will make her all the super soft, squishy, all cotton, wrap-around, ear-covering sleep masks she wants, and hope that she never feels she has to hide who she is behind that other type of mask.
I’m almost 38 and I haven’t learned to drop the mask yet.
That’s the other thing I realized, reading about all those lost girls and lost women. As Agony Autie says, if all of these characteristics of Autistic women fit you, why wouldn’t you be Autistic? All the times I felt like I was from another planet, the times I could not figure out how to be part of a clique or engage in small talk. My own sensory issues, that I never named as such because they aren’t related to sound—I get eye twitches if I am under florescent lights, can’t wear synthetic fibers, can’t eat foods with certain textures, etc. Things I never thought of as special interests, like gardening, learning languages (8 and counting), Economics, and fiber arts. The way I can hyper focus and do more in an hour than I have in the past week. These all added up quite clearly once I thought about it. I don’t intend to seek diagnosis for myself or for my daughter right now, but I identify as self-diagnosed Autistic.
If you know one Autistic person, you know one Autistic person. At this point in my life, I know a lot more than one Autistic person. I don’t know what attracted what, but since understanding autism through the lens of a parent, a daughter, and a self-diagnosed Autistic person, I have attracted so many Autistic adults into my life and I feel at home in a social group for the first time.
My little boy, who wore a tail for more than a year, who can shape shift into any animal he can imagine, who once held onto a flower for half an hour to give it to a girl, who will show you control is an illusion if you try to exert your control over him — he opened my eyes to Neurodiversity. He helped my entire family come to understand who we are and how our brains work. He opened my eyes to a community of Autistic adults who support and love each other in a way that just feels so right. All because he wasn’t going to color if he didn’t want to when there was a pile of Duplo blocks right there and it made no sense that he wasn’t allowed to play with them.
Because he refuses to compromise who he is to please others.