I’m posting the ever-so-rare photo of myself alongside one of my characters based on my childhood because today is World Autism Acceptance Day, and I wanted to show my little corner of the internet who this particular autistic person is:
I was officially diagnosed in February, at age 38 (I’m now 39). A lot of people thought I couldn’t be autistic. Some people who know me in real life still don’t. And until around 10 years ago, I didn’t think I could be either, because I was nothing like the stereotype media portrays. I was told that autistics lacked empathy (untrue), and never played make-believe (also often untrue) and only enjoyed STEM. I was — and am — an empathetic artist -- and make believe? I can spend days sketching finely bedecked bears brewing tea or carefully choosing the right words to weave tapestries of fiction — though perhaps my hyper focus was a bit of a red flag. Even so, how could autism describe me? I was a good student. I got straight A's. I didn’t act out in class. I can make eye contact…if I must. And lots of girls hate having their hair brushed with an unholy passion, right? Clearly I swim in sarcasm like a fish, so autism couldn't be why I was so anxious all the time, could it?
If someone had told me when I was younger what autism ACTUALLY is — instead of the nonsense I’d seen on screens — I would have seen myself in it. I didn’t hear that autistics have sensory issues until I was in my mid-twenties, which is when I first began to really research autism symptoms, and I had almost all of them: sensitivity to light, smells, fabrics, temperatures, textures, and certain touches, all of which make me feel anxious, I fidget (stim), I never know what the hell to do with my hands or where to look, I talk too little or too much, I have special interests, I have entire animated movies memorized shot-by-shot and can remember the first time and place I saw every movie I've ever seen but I often forget what I'm trying to say mid-sentence, I echo movies and tv shows (my husband and I have a whole repertoire of shared echolalias, making up about 20% of our conversations), I was in speech therapy as a kid, I have issues with dysnomia and verbal fluency, I toe-walk, I can't multitask to save my life, I like things just-so, I’m deeply introverted but not shy, I need to recover from all social interaction — even social interaction I enjoy — and I find stupid, every day things like grocery shopping, driving and making appointments overwhelming and intensely stressful, sometimes to the point where I struggle to speak. It turns out, I am definitely autistic. My results weren't borderline. Not even close. And while these aren’t all of my challenges, and not everyone with these symptoms is autistic, it’s definitely something to look into if you present with all of these things at once.
So why did it take me so long to get diagnosed? The same bias that exists in media threads through the medical community as well, and because I'm a woman who can discuss the weather while smiling on cue, few people thought I was worth looking into. Even after I was fairly certain I was autistic, receiving an official diagnosis in the US is unnecessarily difficult and expensive, and in my case, completely uncovered by my insurance. It cost me over $4000, and I could only afford it because my husband makes more money than I do as a freelance illustrator — a job I fell into largely because it didn’t require in-person work; like many autists, I have been chronically underemployed and underpaid, in part due to physical illness in my twenties, which is a topic for another day. But it shouldn’t be like this. It shouldn’t be so hard for adults to receive diagnoses and it shouldn’t be so hard for people to see themselves in this condition to begin with due to misinformation and stereotypes. Like many issues in America, these barriers are even higher for marginalized groups with multiple intersectionalities.
It’s commonly said that if you’ve met one autistic person, you’ve met one autistic person. This is why it’s called a spectrum, not because there’s a linear progression of severity (someone who appears to have low support needs like myself might need more than it seems, and vice versa), but because every autistic person has their own strengths and weaknesses, challenges and experiences, opinions and needs. No two people on the spectrum present in the same way. And that’s a good thing! No way of being autistic is inherently any better than any other, and even if someone on the spectrum struggles with things I don’t — or can do things I can’t — doesn’t make them more or less deserving of respect and human dignity.
But speaking solely for myself, the more I learn about autism, the happier I am to be autistic. I struggle to find words and exert fine motor control, but my deep passion and fixation has made me good at art and storytelling anyway. I find more joy watching dogs and studying leaf shapes on my walks than most people do in an entire day. More often than not, the barriers I’ve faced weren’t due to my autism directly, but due to society being overly rigid about what it considers a valid way of existing. My hope in writing this today is that maybe one person will realize that autism isn’t what they thought — and that being different is not the same as being less than. My hope with my fiction is to give autistic children mirrors with which to see themselves, and everyone else windows through which to see us as we actually are.
If you’re interested in learning more about autism or think you might be autistic, too, I recommend the Autism Self Advocacy Network autisticadvocacy.org and the following books:
What I Mean When I Say I’m Autistic by Annie Kotowicz
We're Not Broken by Eric Garcia
Knowing Why edited by Elizabeth Bartmess
Unmasking Autism by Devon Price, PhD
Loud Hands edited by Julia Bascom
Neurotribes by Steve Silberman
(trigger warning: the last two contain quite a lot of upsetting material involving institutionalized child abuse, but I think it’s important for people to know how often autistic children were — and are — abused simply for being neurodivergent).
Thanks for reading 💛
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