A few weeks back, one of my Autistic sisters and I were chatting about our plans for the day. She and her family were going to a Christmas tree farm. My family hasn’t had a live tree in 10 years, since we realized one of the kids was very allergic to pine trees. I told her, “I always vowed I would never have a fake tree; now I have three.” Her husband quipped, “Children shit on our parade. That’s just what they do.”
A well kept secret, us Autistic parents, we gripe about our kids as much as any neurotypical. But it’s different, and among each other, we know it’s different. We aren’t really complaining about our kids, but our own autistic reactions to family life. The sensory overload, the broken stuff, the messed up, carefully laid plans.
It’s different than how I complained before our whole family was diagnosed Autistic. Pre diagnosis, it felt like an attack, my kids were out to destroy everything. They were why we couldn’t have nice ( i.e. normal, neurotypical) things.
But really, what they were destroying was a carefully created and cultivated mask I had– a mask I thought gave me a pass into the parade they were shitting on.
I’ve always hated being singled out. Singled out for me has rarely meant accolades or congratulations. When people did give me praise, it was for things that came along with a personality I was trying to ditch.
I got nicknames like, Bitchball, She Who Must Be Obeyed, The Regulator. It felt like the grown up version of, “Why Can’t you behave?” “You’re so sensitive.” “Stop being so bossy.” I was singled out for my inability to follow directions, my anger, my insolence, my sensitivities. My abnormalities.
According to armchair psychology (a special interest of mine for years) all of those “negative” traits can be followed back to a traumatic childhood, negligent parents, abusive mothers, toxic environments, which I had experienced in spades.
As a young parent, unaware I was autistic, I believed I was a product of my environment. I was abnormal because of the circumstances I was raised in, and if I raised my children in different circumstances, they had a shot at being normal.
The best way to help my children avoid the fate of being singled out was be the opposite of where I came from. I embraced attentive parenting, gentle parenting, and tried to create a non-toxic environment.
The children shat on my parade. I had sensitive, colicky, refluxy babies. At the age of two my oldest child was unruly, didn’t listen to directions. A handful, a mystery, intimidating, weird.
The middle child was too sensitive, too aggressive, lacking boundaries, rude. The youngest child was too quiet, sensitive, stubborn, slow, worrisome. Regardless of my efforts, our environment felt, but even worse, looked, chaotic and out of control.
My idealized world fractured into a million little pieces when my plan backfired. My children were singled out as behavior problems, I was called into teacher meetings, criticized by family and friends, people drifted away, or I let them go to protect my kids. My kids were wild, hard core, lacking discipline. I was a bad mother. Now we were all singled out.
It took me far too long to realize that something else was at play. Far too long to realize that the harm being done was by me, and my need to mask, to blend in. My need to protect my kids, and protect myself, from being singled out, was hurting us all. I was creating the chaos. It also took me far too long to seek an explanation about why we were all unruly, why we were all hard core.
Masking, at its core, is internalized ableism, and internalized ableism is a hard habit to break. Post diagnosis, I still struggle with masking, I’m still looking for places to blend in, to walk among others unseen, or even just looking for a crevice to hide us all in until the danger passes.
Autism is not a product of an environment. There is no therapy that will fix us, make us look normal, contrary to neurotypical belief. None of us ever had a shot at being normal. We weren’t a product of our environment, but a product of our neurology. What our environment provided was the desire and drive to appear normal. There is safety in being normal.
So, now we go the other way, we walk against the parade, in our combat boots, pushing people out of the way, taking up space, being unruly. To be honest with you, my children lead the way.
I still have my mask in my back pocket, like the scrap of a ragged worn out security blanket. Truly, being hardcore is the only way we Autistics survive. I think about that Banksy image, the young person in a mohawk, with their very normal-looking mother making sure they are fully prepared for protest.
I am now that mother.
I am the mother who allows and equips my children to do what I was too afraid to do: be singled out as the person who shits on the parade. The parade of ableism, racism, transphobia, homophobia, capitalism. The parade of normalcy.
They were always going to do it, I was always going to do it, it is in our nature to shit on the parade. There is no real way to stop nature. Nature always finds a way.
Now I tell my kids what I was never told:
You’re right, it’s not fair.
No one deserves to be treated as less-than.
Living in fear is not anyone’s birth-right.
Resist, fight, make some noise, don’t be afraid to be singled out.
You’re making it possible for other people to come out of hiding, and I’ve got your back.
- Lulu is a Rhinoceros: A Note for Parents, Teachers, and Direct Care Professionals - April 10, 2021
- Unmasking as a Parent: Parades in peril - December 31, 2020
I don’t even really know what a dilemma is. Where from if I only share my inner world with the books and birches. These are my friends and Mauz the cat is my buddy. I am not at all unworldly – I care about people. But I’ll never understand how they take care I got a Christmas present from my psychologist. I should stay the way I am, my communication skills don’t need therapy. Now I understand. During the pandemic, I found people in the virtual self-help group who speak my language. This is how friendships begin.
Hello, lots of what you described is exactly what I/my life is like. I am not as far along as you in figuring it all out and understanding it all. It’s so exhausting and frustrating. My entire life constantly flashes before my eyes. How could I be so stupid to think that I have always perceived myself as ‘just’ abnormal, weird, and nerdy? How did I miss that my ex was very autistic. And my mom. And me. A couple years ago, I had my adult daughter diagnosed. I’ve been reading, learning, thinking, and processing since then. I had no idea what ASC/Asperger’s actually was. A couple months ago I very carefully self-diagnosed and had an LCSW do a diagnosis. I would like to ask the local regional center to do a formal diagnosis, but I am afraid to ask because they are shitty and have refused to give my daughter an IPP or services since the beg of 2019. I say that despite the fact they are very overworked, they are just very unkind and uncaring. I’ve tried my best and have communicated respectfully with them, with no apparent affect. It’s depressing. I’m 67 and I’ve never had a friend, ever and always had dysfunctional relationships with former husbands/boyfriends. I’m pretty sure I’ll go thru some hellish bardo if I even kill a bug, so I am really hard on myself for any thing I may have done that caused sadness in another human. I am obsessed with certain books, certain films, and also try to understand every philosophical subject, all maths, and the realm of human behaviour/emotions, and origami. I feel like a complete failure all the time and have thought that my entire life. I really tried to be a good mom to my two daughters, but always feel like I failed them and cry about it all the time, For 30+ years in Silicon Valley, I told myself every freaking day, that today was going to be the day when I’d be exposed as a complete idiot and dolt and be fired. Looking back at all my performance evaluations and emails from clients and coworkers, I actually did pretty good, but never saw it like that. My isolation has always been pretty much like what people are currently experiencing with coronavirus. What can I say, it’s hard to be honest when it sounds so depressing and/or negative.
Allergies are hardly something to bitch about children for. Maybe I’m too sensitive. Maybe I’d rather have a live child than a tree 🙄 (I’m talking about that guy from the beginning and not you)