This piece by Amanda Van Slyke, a self-advocate, was originally posted on The Mighty and is re-posted here with permission.
Since before I can remember, I’ve lived with traits I now know are from being neurodiverse: Trouble understanding sarcasm, having a hard time communicating verbally, panicking at a change in plans and becoming irritable from too much stimulation. I feel happiest when I’m at home alone, chatting through text and cuddled up in a soft hoodie. I didn’t realize I was autistic until this summer, when finally all the pieces clicked together. It was through getting diagnosed with ADHD that I began to realize there was something else going on, and that the reason my relationships were suffering was because being around people exhausted me.
When I was in daycare, I spent most of my time reading comics and playing Gameboy. I developed such a good imagination from constantly being alone that I could play with cotton balls if I got bored (and I did, once). I didn’t understand why other kids didn’t want to play with me, but I knew I had a lot of energy inside me and pushed down their forts when they rejected me. Once I accidentally ripped the head off a teddy bear as I swung it around, and the daycare worker gave me thread and a needle as if I would know how to sew it back on.
Like many women with autism, trial and error taught me how to socialize. I became incredibly sensitive to social cues — often reading into things too much. I learned to smile and nod my head when people talked to me, even though most of the time I had trouble following what they were saying. I learned how to be charismatic and funny. But socializing would always exhaust me, and when I’d hit my limit I’d become irritable and unable to keep up the charade. I’ve lost friends because of mood swings or bailing on plans, so I learned to keep myself at arms lengths and only spend a limited amount of time with people. I had a lot of acquaintances but not a lot of close friends — and the ones I did have I talked to online.
Having relationships with people online has always been easier. From chat rooms when I was a teen to Facebook now that I’m almost 30, my brain can process words better through text than verbally. I can talk to people on Messenger in my apartment without getting tired, but if I go on a weekend trip with a friend or partner, I’ll likely snap at them, have some sort of mental breakdown and be in bed the whole next week. I often imagine what kind of friendship I’d have with someone I’m fond of, if only I didn’t feel so anxious about actually being around them.
After extensive cognitive behavioral therapy, I’ve learned to work through sensory overload by expressing how I’m feeling and what I need — like feeling frustrated and needing to go for a walk. I’m also seeing if I can find the right ADHD medication to manage my emotional regularity. I’ve been told by friends and my partner that I can be “too negative,” since I tend to say what’s on my mind and what’s usually on my mind is anxiety. And I still get agitated when something overwhelms me — like trying to pick a movie both my partner and I want to watch, or realizing I’ve ruined the pasta I wanted to make for him because I have trouble following directions. It’s a work in progress.
But while I’m working on my romantic relationship, I still have a hard time making friends. I feel safer knowing that if I get irritable, my partner will be more forgiving than a friend who doesn’t have as much stake in the relationship. However, I constantly worry about him leaving me, and feel like a burden every time I’m not able to keep myself from snapping. I worry about turning into my mother, who was regularly yelling about something during my childhood.
In the past I’ve described my mother as abusive, but lately I wonder if she’s neurodiverse like me. Abuse often isn’t black and white. I love my mom, and I understand now why she would snap when I was younger. We have a better relationship these days, but as a child, I didn’t understand how my dad could stay with her. I always told myself I wouldn’t be like her when I grew up, but recently I realized all the cognitive behavioral therapy in the world won’t completely keep me from lashing out.
My partner says I’ve improved on managing my emotions a lot since we met , stopping to think more often than flying into a fit. But I still have moments where I don’t feel able to think before I act. There have been times when I told him that he would be better off with someone who treated him better, because I love him so much and want what’s best for him. During these times I start to spiral and feel like it would be better for everyone if I just hid in my apartment. But he’s still here, and I’m doing my best.
I’m learning that I need to manage my expectations, and that just because our world is built for people who are neurotypical doesn’t mean I don’t have a place in it. Some things are harder for me than others, like going to a dinner party or playing board games — but that doesn’t mean there’s something wrong with me. Accepting this helps me manage my perfectionism towards myself and the anger that comes with it when I don’t live up to neurotypical standards. Realizing I’m going to spend the day after a dinner party laying down, or skipping game night because I know I’ll have a bad time doesn’t make me unworthy of love.
Recently I joined Meetup.com to get myself out of my apartment , and through being open about my struggles online, I’ve met more people in my area who are neurodiverse as well. My hope is that if I surround myself with people who understand me better, I won’t feel the need to be alone so much anymore. Keeping myself from over-stimulation is good — but isolating myself is just punishment for being myself. As one autistic friend said to me, “a lot of us live online” — but we don’t have to. We can create a world where there’s more understanding about people who are neurodiverse, starting by talking about it.
About the Author
Amanda Van Slyke is a Canadian memoirist who writes on sex, disability and relationships. She identifies as disabled, autistic, queer and poly.