Hi. My name is Kaz, and I am autistic. Consider this my “coming out” blog post. I am writing this so I can point people to it without having to explain myself again and again.

Last Saturday I attended a book launch, and a new friend, someone I like, admire, and felt comfortable with, asked me within earshot of two of my retired college art professors, if it was true I was autistic. This hadn’t come up in conversation with him or any of them before, and I’m not even sure where my new friend found out. (He’s not on social media.) Being autistic was the furthest thing from my mind until that moment, and I had been joking and reminiscing about the good ol’ days without a care in the world. The question froze me in my tracks. I felt myself shrink into myself and start to hear my voice like an echo chamber reflecting back my insecurities, my quirks, my failure to mask adequately, my failure to drop my masks so I would be believed. “Um, uh… yeah, I’m on spectrum, but I’m, uh, like what they call ‘high functioning’?”

It’s five days later, and I’m still ruminating on this conversation and revisiting every aspect of my autism, just like I did almost five years ago when it was identified. I feel vulnerable, because I know this conversation is going to come up more now that I have an “autistic coded” picture book coming out in 2023. I also feel crappy about using a functioning label to explain why I didn’t seem autistic to him.

I don’t blame people for being surprised that I’m autistic. (NOTE: It is not a compliment to say “you don’t look autistic.”) Even my primary care physician didn’t believe me when I asked her for a referral for diagnosis. “I’ll write you a referral, but I’ve been talking with you for ten minutes, and I can assure you, you don’t have autism. You have an anxiety disorder, and you’re probably on spectrum or have Asperger’s, but you are talking and making eye contact and joking with me. You don’t even walk on your toes! Isn’t it a relief to know you aren’t autistic?”

No, ma’am. None of this conversation has put me at ease. For one, Asperger’s is a term we don’t use anymore, at least not in the US. I’ll let you do that research on your own, but… because Nazis. Functioning labels hurt all of us. “High functioning” people can’t get supports and “low functioning” people are robbed of their autonomy.

By the time I asked my doctor for a referral, I had already spent over six months deep-diving on absolutely every book and scrap of information I could get on autism, especially on the lesser studied ways it can present in “high functioning” non-male or female-identifying individuals. I had taken every single test I could find, including ones used for official ASD diagnosis, never with a result any lower than “you are very likely autistic” or “very likely on the broader autism cluster.” I had journaled pages and pages of anecdotal material to support my history. I had talked to my diagnosed friends, and people like my mom and aunt who know me best. I didn’t even confide what I knew about myself to my husband for this whole time, because I wanted time to process, and I wanted to be absolutely sure. Once I told him, it took him a while to process and research, too, but never once did he find a reason to question it. Me being autistic literally explains everything about why I am the way I am.

During the course of my research, I discovered massive amounts of outdated information based on studies done in the 1950’s-1980’s, but still used today. I found mountains of ableism, more conspiracy theories than you can shake a vaccine syringe at, and study after study based solely on young white males. No wonder girls are going unidentified and underdiagnosed. I didn’t even believe it in myself, despite there being diagnosed autism in my family. Despite my oldest son being identified in first grade.

No one told me about a girl’s tendency to use her intelligence to mask, mimic, and fit in as socially “normal.” No one told me about the connection to social anxiety, anxiety attacks, and meltdowns, usually at home after being on her best behavior at school. No one told me about autistic burnout, the higher likelihood of depression, the absolute need for alone time and recovery, the extra sensitivity to sound, light, smells, and textures, the connection to synthesia, ADHD and executive dysfunction, and learning challenges like dyscalculia, or the tendency towards special interest like drawing, books, and writing. The more I learned, the more shocked I was that I’d gone unidentified and undiagnosed for over forty years. It was all there!

The truth is, I don’t “look autistic” to most people, because I am a seasoned performer. We’re talking 46 years of masking experience. I know how to exude charisma. I know how to use fashion (see: costumes) and humor as smoke and mirrors. I know how to hold eye contact, even if I don’t like it. I have studied neurotypical ways of speaking, and have a library of scripts ready to go. I have studied every personality typing system there is so I can crack your code and know how to understand and communicate with you. I have crafted my whole life around not getting too exposed or too burned out. My autistic traits are only really visible when I’m stressed, but it doesn’t make me any less autistic.

And if I’m really comfortable with you and not masking so much, it’s because you don’t mind that I’m blunt, that I interrupt and go on too long about myself or my special interests, that I doodle and pick and chew and even wiggle my butt constantly (stim), that I have a sick sense of humor, that I am a loud and unapologetic advocate for artists and the underrepresented, or that I go completely missing for days or weeks, and come back into your life like no time had passed. If you are one of these people, thank you! And whether you realize it or not, you are probably nuerodivergent, too.

A few boundaries.

  • I don’t owe you my diagnosis. I don’t have to prove my autism to you.
  • I don’t have to talk about being autistic. Unless I start the conversation myself, this makes me very uncomfortable.
  • Don’t presume what I can and can’t do. It’s not a one-size fits all situation. Being on spectrum means some days I am fully social and talking my head off, and other days I can’t be around anyone and can barely speak. Please invite me anyway. Let me tell you what I can and can’t handle.
  • Don’t call me unless you are my agent. I won’t answer. Don’t take this personally. I am phone averse.
  • Do ask me about my special interests. I will always want to talk about children’s books, illustration, real hauntings and the paranormal.

To my new friend, yes, I am proudly autistic. My brain is different, and I love who I am, not in spite of it, but because of it. I am also still just Kaz, that goofy, edgy, tattooed artist who loves coffee, books, and waffles. I want to advocate for other autistics, but I want to do it on my own terms. It’s why I wrote BITSY BAT. I want my writing and my art to speak for itself.

Continue to question what you think you know about autism and look to actually autistic people to find out what is true about us. There are lots of good forums for this on Facebook and Twitter. And if you aren’t autistic, don’t write books about us. Let us tell our own stories, or at the very least, collaborate with us on telling our stories.

I will probably have more to write on autism later, but but I hope this clears up any questions or confusion. I needed to get it off my chest and can go back to doing what I love most– writing and illustrating books for kids.

With love,

Kaz

P.S. Autism $peaks is an ableist hate group and ABA therapy is abuse. Identity first language is the autism community’s preference. You aren’t an “autism mom” unless you are autistic. Stop talking over us.