The Importance of Being a Zebra
On labels, autism, and self-understanding
“Have you ever thought that I might be on the spectrum,” I asked, curling my body up in the driver's seat of our 4runner.
“Oh yeah,” she doesn’t even pause, like maybe she’s been waiting for this question but as she’s my friend and not my therapist, she probably didn’t want to initiate that conversation. Clearly she’s thought about it.
For context, she’s not even a therapist, but she is qualified to make the statement at least from where I sit. Her oldest son was diagnosed with autism about ten years or so ago, and she helped co-found a non-profit organization to work with autistic individuals, and so after that many years of experience, she knows what she’s talking about.
This didn’t shock me as a “diagnosis,” as I’d told my husband a few weeks prior to this that I was pretty sure I didn’t “just” have ADHD, but that I was also on the spectrum.
I’ve never been officially diagnosed with either, and so I hesitated to write about it until I had “confirmation.”
But here’s the thing: I didn’t go looking for either of these labels, rather they found me. When my oldest was diagnosed with ADHD when he was five, I started reading about all things ADHD so I could better parent him and understand him. What I didn’t expect was all the things I found where I started saying to myself, wait, that’s ADHD? And THAT’s ADHD? Am I also ADHD?
I followed adult neurodivergents on social media so I could learn about neurodivergence from people actually in the community including autistics, and after years now of following them, I finally admitted to myself that I had much in common with autistics as well. There is of course, a lot of overlap.
One of the things I’m hearing from adult autistics is that diagnosis is easier to get when you’re dysregulated, when you’ve been fighting the neurotypical world and are near burnout. If you have the ability to create a neurodivergent life, to carve a niche in the world where you don’t have to mask and pretend and translate yourself, well, then it’s hard to get diagnosed.
It’s hard for women and girls and people of color to get diagnosed as well because all the diagnostic rubrics are based on white males. And I’m sure there’s an anti-LBGTQIA+ bias as well, which is ironic given that many autistics are also queer.
If we go with bell hooks definition of queer, I think it also fits neurodivergents as well: “‘Queer’ not as being about who you’re having sex with (that can be a dimension of it); but ‘queer’ as being about the self that is at odds with everything around it and that has to invent and create and find a place to speak and to thrive and to live.”
That has certainly been my experience even before I knew these labels. I once wondered why we needed all the labels, why couldn’t we just let people be people? Couldn’t we take people at face value so to speak, believe they were who they said they were?
But it’s never that simple, and I don’t know when it would ever be that simple. For me discovering these labels has come with and overwhelming sense of relief. As much work as I’ve done on myself through my adult life reversing the beliefs that something was wrong with me–that I was broken as I’d been literally told verbatim in the past–knowing that the way I’ve experienced the world is in fact normal made me feel like a part of me that never breathed properly could breathe for the first time.
My normal may not be your normal, but that’s okay, or at least it should be. But our society is set up to normalize and enforce a neurotypical, non-queer experience. For example, a writer acquaintance on social media posted a meme that said, “Normalize not telling a story about yourself when your friend tells you something that’s going on in their life, just listen.” I decided from what I knew about this person, they would want to know that neurodivergents frequently communicate by sharing a story of themselves to show they understand what the person is going through, and several other autistic women chimed in to agree. I was right about my acquaintance, she did want to know about that, and thanked us for sharing our experience.
It was just a meme, but it’s an example of how neurotypical thinking gets enshrined as normal and then that normal gets a moral value assigned to it.
I remember once in college, a bunch of us in a loose friend group were walking out one night and one of the girls who had long very curly hair had gone to her stylist and had it all straightened just to see what it would look like, which is fine, but the whole group was falling all over themselves telling them how gorgeous she looked and how amazing it was and all this not about her natural hair. I stayed quiet even though I was thinking that it was terrible that she was getting all these compliments for something she could never do every day, and that every day she woke up with her curls back, she was going to think she wasn’t quite as pretty unless she straightened them. But I was determined not to chime in until one of the guys turned and said, “Anna, what do you think?” And I replied, “I like her hair better the way God made it.” He sputtered and scolded me on the spot for not complimenting what she’d done and the time it had taken and so on and so forth.
That’s not the only time I was shamed by friends or family for just speaking directly. People have often wondered if I was angry because I was direct or because I wasn’t smiling. I explain things and people have assumed I’m making excuses but I’ve been misunderstood so frequently, I try to give people context and then I feel like I’ve over shared and the shame cycle begins again.
Coffee, Shalom, and Everything Between is a reader-supported publication. To support my work, consider becoming a paid subscriber.
So this year with my word being “open” I’ve decided that I’m going to take my usual approach to shame: shine a light on it. Shame only exists in the dark corners of our hearts where we’re convinced we can’t show anyone because they’ll reject us. Side note: as neurodivergents also experience rejection sensitive dysphoria at real or perceived rejection that adds a layer of complexity to this exercise, but I still believe it’s important.
Will I seek an “official” diagnosis? I don’t know. I don’t have a lot of time right now. I actually got a referral for the ADHD part a year or more ago from my GP and called the place about eight months later (after losing the paper, and having to remember to get an electronic copy from the doctors office so I could call), and after all that, they never called me back to make an appointment.
Those with ADHD are laughing right now because they know this cycle should literally just be a diagnosis in itself. If someone suspects they have ADHD, for goodness sake, just make the appointment for them. Giving them a paper to keep track of and make a call from is like asking someone with a broken leg to walk across the town to pick up their crutches. If you’re confused by this analogy, you don’t have ADHD. There, I diagnosed you for free.
Why does understanding labels matter? There’s a meme going around that sums it up nicely: It’s important to know that you’re a zebra and not a messed-up horse. If you go through life thinking you’re a horse when you’re a zebra, you’ll never have the ability to thrive as a zebra.
To be continued… if I remember. Seriously, you might have to ask for the next part ;-)
Alabama Trailblaze Challenge 2023
Last year, I decided my words for the year were “find out,” and one of the things I wanted to find out was if I could pull off the 2022 Trailblaze challenge. And I did! Hiking by myself on all those training hikes showed me a lot of personal strength and I went into wanting to help kids but it still felt like more of a personal goal.
This year, as I sign back up in the midst of studying the interconnectedness of the forests I hike through, I realize that we are all connected: connected to each other, connected to the rest of life on this planet for better or worse.
Hiking last year with several hundred others, getting to know them on the hike weekend, hearing their stories, I realized how much of a difference it makes when we all come together. Raising over a million dollars seems like a lot when we’re raising $2500 to $5000 a person, but when you multiply that by hundreds of hikers and thousands of donors, suddenly it’s achievable. We raised over a million last year, and we’re setting out to do it again. And you can be a part of the story! Some of you already have been, and I’m so grateful that you’re back to do it again.
I am excited to take on this year’s Trailblaze Challenge. In addition to the physical challenge, I have committed myself to raising the critical funds necessary for Make-A-Wish to grant the one true wish for each eligible child with a critical illness. With your help, it’s possible.
Did you know that Make-A-Wish grants more than 15,000 wishes nationwide every year? That’s a lot, yes. But that’s only 50% of the eligible kids. Every hour of every day, on average, three children are diagnosed with a critical illness. Every one of these kids needs a wish to give them strength and help them heal. I’m fundraising so more deserving kids and their families can know the true happiness, relief and renewal a wish can bring.
These essential wishes are only possible because of supporters like you. Together, we are transforming lives- One wish at a time!
Will you help me support Make-A-Wish by donating today?
Reclaiming Your Wild
Visit this post to learn more about hiking and backpacking retreats where we reconnect with the wild in ourselves and learn to read the Book of Nature. Coming Fall of 2023.
If you are do not want notifications to this new section, unsubscribe from just this section by following the instructions in this article.
Substack now has chat in the app!
In an effort to be a more robust media ecosystem, Substack has created an app that now lets you see all your subscriptions in a feed, as well as chat with your favorite authors and other subscribers who read them! Head over to your app store, or click here and download that for a more complete experience.
Anna Elisabeth Howard writes highly caffeinated takes on shalom as a lens for everything from her front porch in Hendersonville, TN where she lives with her husband and two sons. She is a community organizer and movement chaplain with a background in youth and family ministry and is a graduate of Fuller Theological Seminary. An avid hiker and backpacker, many thoughts start somewhere in the middle of the woods, or under a waterfall. She is a regular contributer to Earth & Altar and her latest book is Inward Apocalypse: Uncovering a Faith for the Common Good.
Buy Inward Apocalypse: Amazon | Independent Booksellers
Social media: Facebook | Instagram | Mastodon
Join the subscriber chat! If you already have the app, just go to the new chat section, if not, download the app here.
I’m one of the facilitators of Freedom Road’s Global Writers’ Group. If you’ve been looking for a community of writers to boost you to the next step of your writing goals—wherever you are in that process—join us!
Join the community:
Coffee, Shalom, and Everything Between is a reader-supported publication. To receive new posts and support my work, consider becoming a paid subscriber.