I’m thrilled to be officially querying a brand new manuscript in hope of agent representation! It’s titled THE VIOLET TAMARIND and you can read more about it and see a gorgeous mood board one of my beta readers made for it here.
But Allison (asked almost no one), whatever happened to that post-apocalyptic science-fiction novel you were writing for like five years and pitching and querying to agents?
Ah. Yes. That.
You’re referring to ECHOES OF THE OLD WORLD, the manuscript I started writing in my MFA program (one year for coursework, one year for my thesis) and then continued to work on until I finally (FINALLY) finished it, sent it to beta readers, revised (and revised and revised), and queried.
The short answer is that after one year and over 100 agents queried, no one offered representation. I shelved the book.
Shelved means I’m no longer working on it or attempting to publish it, traditionally or independently.
Definitely unfortunate. Often depressing. Not what I wanted for myself or the story. But I learned a lot through it about my own process, how to write a book, how to NOT write a book, and the publishing industry.
There were a couple of factors that, in retrospect, likely kept agents from offering on ECHOES.
1. I was querying a post-apocalyptic novel during a global pandemic.
Super bad timing. I had already started the querying process in January of 2020. Between the worldwide trauma and aversion to apocalypse since it seemed to be our new reality and the economic recession that hit (and is still hitting) the publishing industry, there was little to no chance of being offered representation with this book at that time.
2. I had unintentionally and unknowingly written an autistic protagonist.
I worked on this book between 2015 and 2019, and I found out that I’m autistic in November 2020. In the throes of processing this new self-knowledge, it dawned on me that my protagonist was also autistic. This amazed me, helped me understand agent rejections, and broke my heart a little. Amazed, because I had so clearly written in autistic traits without meaning to at all. Helped, because I could definitely see how a neurotypical person wouldn’t understand or relate to why my protagonist felt and acted like she did. Broke my heart, because I had so boldly written my own experience of being alive into this character, assuming it was relatable, and she’d been misunderstood. I’d been misunderstood.
Figuring out that my protagonist is autistic is a huge step forward in making the book work. When I lay in bed at night, I get ideas about how to restructure the story so the reader will have no choice but to fall in love with my characters. Ideas about how to rewrite the thing so that autism is included with intention.
But I also have other books in me that want to be written. I’m currently about 70k words into a first draft of a super cool fantasy novel that may end up being a duology. I have another idea for a different fantasy novel. And I could very well end up writing a sequel to THE VIOLET TAMARIND.
I don’t want to move backward, caught in a maelstrom of a book that will never be finished, never be perfect, and never be represented or published, while books that could be are never written into existence.
If there’s a time when it feels like coming back to ECHOES is right, I’ll come running to it with open arms. But for now, it’s onward and (hopefully) upward.
These are my own opinions and reflections. I know others may and do feel differently and at no point do I judge, belittle, or put down anyone for how they deal with or think about the subject of this post. I may also feel differently in the future. This is all a learning process.
I was diagnosed with autism and inattentive ADHD in November 2020.
Almost immediately after I found this out, I realized I hated saying that sentence, especially the “diagnosed with” part. I am still getting used to, “I am autistic,” but through those words, I feel a sense of pride and relief: they help me know myself more fully. “Diagnosed with” never sat well, and as time goes on, it’s sitting worse and worse and worse.
Why?
Let’s deal first with the word diagnose. What does it imply? Disease. Ill health. Failing organs. Shortened lifespan. And, sometimes, an accompanying cure.
I know this word has been important in the history of autism and our understanding of it. Pathologizing neurodiversity as a disease has been historically necessary in order to get autistic children legal access to any form of education, let alone accommodation once actually in the classroom, and to get autistic adults accommodations in the workplace. But it’s wildly stigmatizing.
Pathologizing neurodiversity has pathologized entire ways of being. For many neurodiverse (ND) people, this has led to damaging and traumatic experiences, as neurotypical (NT) people around them sought to cure them out of behaviors, traits, and tendencies that did not fit within arbitrarily and culturally defined categories of what they deemed “socially acceptable.”
What NDs need is not diagnosis and cure, but empathy and acceptance from their NT peers. The anxiety and depression most NDs (including me) struggle with is in large part due to our attempts to interact with a society that does not understand us or our brains, and seems to have no use for us or interest in us.
Societal education is needed, across the board, in workplaces and schools and religious institutions and grocery stores and banks and in public transit… This should be simple. But there is no switch to flip for a better society. And, unfortunately, there are NT people out there (like the musician Sia) who are willing to benefit financially from perpetuating stereotypical and harmful interpretations of autism for mainstream audiences, many of whom may not have other interactions with autism.
But, as the wonderfully empathetic Mr. Rogers once said, there are always helpers. There are many amazing advocates and ND people hard at work right now with the goal of societal education in mind, some of whom have been working since before I was born. As a writer, choosing my language is one way to contribute, a way to fight back against pathologization, and to fight for a more enlightened, caring, and openly diverse population.
Now for the word with.
With is a preposition, a part of speech that expresses relation between a noun and something else in the clause. As I tell the students I tutor, prepositions are hard. I’d also add that they’re important.
For example:
There is nothing wrong with me.
But there is something different about me.
About me is identity. “Let me tell you about her,” implies that the speaker is going to describe the person in question. With me is in addition to, alongside, accompanying. Autism, ADHD–neurodiversity–is not accompanying me, as cancer cells do someone with Leukemia. Neurodiversity is me. It doesn’t impede my functionality; it describes it.
In the right setting, my neurodiversity is an asset. In the wrong setting, it’s not.
Which brings up another, darker layer to all of this though, involving internalized ableism.
For those who might not have come across the term, Merriam-Webster defines ableism as “discrimination or prejudice against individuals with disabilities.” It’s essentially the incorrect concept that people with disabilities are lesser.
When ableism is internalized, just like when racism is internalized, ableist thought becomes part of the structure of our minds. We can act in ableist ways without realizing what we’re doing. Even if that means we’re being ableist toward ourselves.
There is a possibility that I may have an aversion to the phrase “diagnosed with” because I have unresolved internalized ableism, which I am experiencing here as resistance to applying that phrase to myself.
But I also don’t feel totally comfortable with the term “disabled.” Again, this could be internalized ableism telling me “disabilities = bad” and so I try to distance myself. The facts of the matter are: I have to approach tasks and situations differently than NT people might. I have difficulties with social interactions and in relationships. I have a low energy level and I have trouble regulating my emotions. I struggle with anxiety and depression as a result of being in a culture that doesn’t seem to understand or value me, or what I need to thrive. The very reason I sought assessment in the first place was because I was feeling disabled.
I clearly still have a lot of thinking and processing and learning and growing to do around all of this. But I wanted to write this essay anyway, to capture the evolution of my thoughts, to be transparent, to show what it looks like to realize you’re autistic in an anti-autistic society, and, selfishly, to help myself process by writing and thinking about all of this.
Words matter. The way we talk about our differences matters.
For now, this is how I’m choosing to talk about mine. Rather than saying, “I was diagnosed with autism,” I say,
I’m neurodiverse. For me, that means I’m autistic, ADHD, and HSP.
And, I suppose, if anyone expresses surprise or doubt, I can pull out the old, “I was evaluated and met assessment criteria for” card, but I’d like to do as much as possible to de-stigmatize and de-pathologize a way of being, even if I have to do it one word at a time.
If you have thoughts on this topic, please share in the comments! I’d love to have dialogue with you all about this, whether this is all brand new to you, or if this is something you’ve thought about already. I’m completely open to learning and growing and changing my mind.
This is the first post in a potential “How to” series about using Microsoft Word for writers. If you like this kind of thing and would like more posts deep-diving into the mysterious and magical intricacies of Word, let me know by dropping a like and/or comment!
Getting beta feedback can make all the difference in your manuscript, but it can be difficult to organize the feedback you get. Flipping back and forth between multiple Microsoft Word files to compare how different readers felt about the same passages is less than ideal.
Believe it or not, Microsoft Word can actually help with that!
There’s a way to merge documents so that comments and tracked changes are combined, as if each reader commented and tracked changes in the same file.
And, as far as I can tell, you can merge as many documents into one file as you want! I merged four, and one of them was originally a Google Doc that I downloaded as a Word file.
KEEP READING TO LEARN THIS SORCERY...
(I’m using Microsoft Word for Mac, Version 16.44. If you have a different version, these instructions might not line up exactly, but should hopefully point you in the right direction.)
1. Open a Microsoft Word file.
It doesn’t matter what file you open. You can even open a brand new blank file, like I did in the screenshots below.
2. Click the Review tab on the top navigation ribbon.
3. Click the “Compare” button.
When you do this, you’ll get two options: Compare Documents and Combine Documents.
4. Click “Combine Documents.”
This will open up a dialogue box.
5. On the left, select the first file you want to combine.
You can do this by clicking the gray arrows or the blue file folder. The gray arrows will show recent documents, and the blue folder opens up access to any file on the computer/device. As far as I can tell, it doesn’t matter which file you pick for Original Document or Revised Document; they get merged into a brand new, unnamed document, without apparent hierarchy.
6. Fill out the left-hand “Label unmarked changes with:” box.
Whatever name or label that you put here will be applied to any unmarked or author-unrecorded changes in the file listed above. So if Jane Doe was your beta for the file in the Original Document slot, put her name in the blank below that file, so you’ll be able to see which comments belonged to her. Unless you want all your beta comments to be anonymous (I can’t imagine this would be useful, but hey, everyone’s got their own process), this is super important. Otherwise all comments may end up looking like they were made by the same person.
7. On the right, select the second file you want to combine and input a label for unmarked comments.
This is exactly the same as in steps 5 and 6, except under the heading of “Revised Document.” Again, as far as I can tell, there’s no reason to put one document under “Original Document” and another under “Revised Document.” They’re all going to the same place!
8. Click OK.
9. Microsoft Word will generate a brand new, unnamed file with the comments and tracked changes merged.
This may take a second, especially if your files are really large, but there’s nothing else to do but wait here. Word will open the document immediately.
10. If you have more than two betas’ comments to combine, repeat the process, adding one new file each time.
We seem to be limited to combining two documents at a time. So it’s possible to combine as many files as you want, but you have to kind of build up to it, each time generating a new file with one more set of comments included.
If you need to repeat the process, make sure that when you get to the Combine Documents part, one of the selected documents is the merged file you just made (the one that already has two betas’ feedback in it).
As you build, you’ll create some excess files that don’t have ALL your betas’ feedback included. Keep these as backups or delete them; it doesn’t really matter. They’re just building blocks in the process of the Master Doc to Rule Them All that we’re after.
11. Bask in the glory of your creation.
It’s all organized! It’s all in one place! It’s really easy to see where your betas are agreeing or disagreeing! (It might create a bunch of weird tracked changes to do with formatting…I haven’t figured that out yet…but it might not happen to you…and I just ignored them! They didn’t get in the way! I was mostly using tracked changes to look for typos or sentence stuff!)
Before my first appointment with the clinical psychotherapist who assessed me, I knew I was autistic.
As I talked about in a previous blog post, the education, mental health, and health care systems did not identify me as autistic; I discovered it on my own at age 30, like so many other women whose neurodiverse traits don’t match the stereotypical male presentations.
So if I knew I was autistic, why did I bother to go through all the stress, expense, and time to get an official assessment of Autism Spectrum Disorder in a pdf? (Especially now that I’m 30 and ancient of days?)
Great question.
1. Things weren’t going so great.
There’s a mentality among some that if I’ve made it this far in life without an official recognition of my neurodiversity, that everything must be fine. This is far from the truth.
Yes, I was an “A” student. Yes, I graduated from a master’s program with a 4.0 GPA. Yes, I am employed.
But my life post-structured school environment was at loose ends. The world around me seemed to be getting more and more intrusive as I felt more and more sensitive to all sensory input (the seams of my clothes, ambient noises, foods, interruptions, smells). I had several part-time jobs, but couldn’t afford rent on my own. I had trouble keeping all but a small handful of friends. I was anxious. Periods of depression were coming more often and lasting longer. I wasn’t happy. Everything felt harder for me than it seemed to feel for my peers. I had started to feel disabled.
When I found out about how autism looks in women, I knew I had a potential answer. And I knew I needed help with that answer and all its implications.
If things aren’t going great, it’s always a good idea to seek help. Partly because I’m autistic, though, I prefer to do things on my own, including research. I wanted to go in to a professional for help, with a strong, clear idea of why I needed help.
2. Self validation.
I needed to prove to myself that my assessment of myself was accurate. Self doubt and the need for external validation is a problem for me, probably from years of anxiously and unsuccessfully navigating social and health care systems. I am also extremely empathetic, and it can be difficult for me to tell whether emotions or experiences I’m learning about are mine, or if I’m taking on the emotions and experiences of others. I’m also a bit of a hypochondriac. I was 90% sure I was autistic, but I needed an official’s opinion for the last 10%.
This might not be necessary for everyone. If you’re super confident in your own understanding of yourself, all the better for you! I am more than a little jealous of your self-confidence.
3. Social validation.
I wanted backup if family and friends didn’t believe me. I was very afraid of telling people about my discoveries and hearing, “You don’t seem autistic,” or, “You can’t be autistic because of X.”
Those closest to us can hold a lot of power over us. The denial of autism is a knee-jerk reaction, I think in part because of internalized ableism and the ways autism has been wrongfully stigmatized. But it’s a lot harder for those closest to us to try to explain away our experiences if we have a third party (who also happens to be a licensed professional) backing us up.
4. Recognition and respect from the mental health field.
My experience with the medical and mental health care fields is that, unless there’s an actual, scientific diagnosis, my descriptions of my situation tend to be mislabeled as anxiety and dismissed. A doctor, counselor, or therapist would respect the official documentation of my assessment far more readily than my claim to be autistic without any “proof.” Having a third-party recognition of autism, ADHD, etc., will also help to make the most of future therapist-client interactions.
5. Accommodations.
Just because I’m out of school with no plans to go back (if I EVER write about wanting to get a Ph.D. or another master’s, STOP ME) doesn’t mean there’s no reason to seek assessment. Telling an employer that I need to be accommodated because I think I’m autistic carries less (or maybe no) legal weight than if I have an official stamp from a clinical psychologist.
Neurodiversities can and should be welcomed in school and the work place. That means that individual needs should be met wherever possible so that we can thrive alongside our more neurotypical peers. Advocating for yourself will likely go better overall if an official assessment shows neurodiversity.
6. Bonus knowledge.
My assessment revealed that I also met criteria for Inattentive ADHD. This was a total surprise. I never would have found this out or suspected this on my own–or at least, it would have taken me a while longer. The ways my autistic traits interact with my ADHD traits is a whole thing, and probably, a whole different blog post…
Assessment may reveal things about yourself that you had no idea about, things you weren’t necessarily looking for, but which could help in day-to-day functioning and in deepening self-knowledge.
But in the end…
All of this refers to me and my experience. It is not a recommendation or a suggestion. If you’re on the fence about assessment, there are definitely pros and cons, and you should absolutely do your own research and make the decision that’s best for you. I was lucky enough to have the time to invest, the money to afford it, and connection with an assessor who was aware of the most recent research emerging on women on the spectrum, and, who was kind. Not everyone is so lucky.
This whole journey can be completely overwhelming, and I wish I’d had someone to talk to about it. So, even if we’re total strangers, I am 100% available to listen or to talk you through any part of it. Feel free to reach out to me, either in the comments or by message, even if you’re reading this five years after it’s posted!
The most important takeaway of this entire post is:
Do what you need to do to live the happiest, most fulfilled life possible.
This is the fourth consecutive year I’ve written a “year in books” blog post, and 2020 is the weirdest of them all. This year (ugh, this year) has been wild, devastating, excruciating, depressing, anxiety-inducing, heartbreaking…
We’ve all lost so much.
Where I live, the library was closed–CLOSED–for a long period of time. So if I wanted to read something (and I always do) I had to turn to my own bookshelf. This was fine: I am comforted by books I’ve already read. There was a very crucial sense of stability there, too: in a world that had ceased to be predictable in any sense of the word, I knew how the plots of my favorite books would go. I knew what would happen next.
But my minimalist tendencies had kept the number of books I own relatively low. During those days when a trip to the library was an impossible luxury, I sorely regretted that decision to keep few books. I don’t have the resources to buy every book I want to read. So, for emotional, logistical, and financial reasons, I re-read a record number of books this year.
I have no regrets.
Apart from not having enough books.
Thanks, 2020, for showing me the importance of owning books, and giving me permission to invest in something so important to me.
As a general caveat, I am not totally sure this reading list is complete. I have the sneaking suspicion that there are books I read that I totally forgot about in the brain fog of global trauma. There are also several books toward the end of the list that are in progress, and will have to be finished in 2021. Something else I have gotten better at in 2020 is: knowing when to concede that I am at the end of my mental, physical, and emotional resources. I didn’t meet the reading goals I set at the beginning of the year. And that’s fine.
F = fiction, SFF = sci-fi/fantasy, YA = young adult, MG = children’s, NF = nonfiction, P = poetry
Italicized books are re-reads.
Salvation Day, Kali Wallace (SFF)
Sputnik Sweetheart, Haruki Murakami (F)
Severance, Ling Ma (SFF)
Hard Boiled Wonderland and the End of the World, Haruki Murakami (SFF)
La Belle Sauvage (The Book of Dust, #1), Philip Pullman (SFF)
Cosmicomics, Italo Calvino (SFF)
City of Hate, Timothy S. Miller (F)
The Spinning Place, Chelsea Wagenaar (P)
Out of Africa, Isak Dinesen (F)
Anthem, Ayn Rand (SFF)
Never Let Me Go, Kazuo Ishiguro (SFF)
Dance Dance Dance, Haruki Murakami (SFF)
Where Late the Sweet Birds Sang, Kate Wilhelm (SFF)
Exhalation, Ted Chiang (SFF)
Recursion, Blake Crouch (SFF)
Gormenghast, Mervyn Peake (SFF)
Alpha Bots, Ava Lock (SFF)
Blind Willow, Sleeping Woman, Haruki Murakami (F)
The Secret Garden, Frances Hodges Burnett (MG)
Refusal: Poems, Jenny Molberg (P)
Velocity Weapon (The Protectorate #1), Megan E. O’Keefe (SFF)
The Big Book of Exit Strategies, Jamaal May (P)
Hum, Jamaal May (P)
Mossflower, Brian Jacques (MG/SFF)
Pearls of Lutra, Brian Jacques (MG/SFF)
When Darkness Falls, A. E. Faulkner (SFF)
Circe, Madeline Miller (SFF)
The Queens of Innis Lear, Tessa Gratton (SFF)
Empire of Sand (The Books of Ambha #1), Tasha Suri (SFF)
Senlin Ascends (The Books of Babel #1), Josiah Bancroft (SFF)
Icelandic Folk and Fairy Tales, Jón Árnason, May Hallmundsson, Hallberg Hallmundsson (SFF)
What I Didn’t See and Other Stories, Karen Joy Fowler (F)
Favorite Fairy Tales Told in Japan, edited by Virginia Haviland (SFF/MG)
Basho: The Complete Haiku (P)
The Language of Thorns, Leigh Bardugo (SFF)
Piranesi, Susanna Clarke (SFF)
Baba Yaga: The Wild Witch off the East in Russian Fairy Tales, translated by Sibelan E.S. Forrester (SFF)
The Heroine’s Journey, Maureen Murdock (NF)
Fierce Fairytales, Nikita Gill (SFF/P)
The Handmaid’s Tale, Margaret Atwood (SFF)
Divergent Mind: Thriving in a World That Wasn’t Designed for You, Jenara Nerenberg (NF)
The Secret Commonwealth (The Book of Dust, #2), Philip Pullman (SFF)
The Arm of the Sphinx (The Books of Babel #2), Josiah Bancroft (SFF)
Memories, Dreams, Reflections, C. G. Jung (NF)
The Hod King (The Books of Babel #3), Josiah Bancroft (SFF)
The Glass Hotel, Emily St. John Mandel (F)
Piranesi, Susanna Clarke (SFF)
Tales from the Perilous Realm, J. R. R. Tolkien (SFF/P)
Books in Progress:
A Room Called Earth, Madeleine Ryan (F)
NeuroTribes: The Legacy of Autism and the Future of Neurodiversity, Steve Silberman (NF)
The Zen of Creativity: Cultivating Your Artistic Life, John Daido Loori (NF)
As always, I have strong opinions about all of these titles, so feel free to drop me a comment about any of them. 🙂
Here’s to 2021, and all we hope to gain, and all the reading we’ll do.
My recent autism and ADHD diagnoses have prompted some intense reprocessing of my own memories and lived experiences. It’s like sitting in the chair at the eye doctor, and a new lens is flipped down. Suddenly, everything is clearer. Through the lens of neurodiversity, many things about me and my life make a lot more sense. Understanding myself as neurodiverse is by no means a magical key that’s unlocked all self-knowledge, but my self-knowledge is deepening.
Writing is integral to my life. Which is the same thing as saying I am a writer. It is part of my identity, it is a title I strive to deserve, and it is how I want to spend my time. But what on earth possesses me to sit alone in a room, thinking deep and involved thoughts, and spending hours and hours writing them down? Why do I do that? And why do I feel like I have to?
Writers tend to think about this a lot. They compose Artist’s Statements that deal with their motivations and intentions, if for no other reason than to explain themselves to people who just can’t understand why someone would want to be a writer. I’ve done the same thing. But now, I am looking at this question again, through the lens of my neurodiversity.
This is all new territory. In 2018, I self-identified as an HSP (Highly Sensitive Person), which means my central nervous system processes stimuli more deeply than 80% of the population. In November 2020, I also found out I am Autistic (Asperger’s) and also have Inattentive ADHD. (I wrote a blog post about my journey to assessment and meeting the DSM-5 criteria for these neurodiversities; you can read it here.)
I grew up without this self-knowledge. When I was a kid, I really struggled with school. I did fine as far as grades went. I taught myself to read before kindergarten, and the work itself was easy… But everything related to the logistics of the school day and social interaction was overwhelming. Making friends was confusing, the school day was exhausting, and the thought of going to school often left me with anxiety. I found participating in the world to be very difficult, if not impossible. I didn’t know why. I didn’t know how to express this. And–worst of all–no one else seemed to feel the same way.
The greatest conflicts and unhappinesses in my childhood revolved around school and social situations. The greatest happinesses came from reading. In books, and fiction in particular, I found a safe way to explore and experience a sense of belonging. A way that didn’t overwhelm or exhaust me. A way that allowed me to dissolve into strange new worlds and forget about the stresses of the day.
I read immensely and voraciously. I took home stacks of books from the library too tall to carry. I read for hours alone in my bedroom after school, coming out in a daze for dinner, and rushing right back to my book to read all night. I always had a book with me at school, too, and when I inevitably finished my desk work before my classmates, out it came.
I realize now that I was likely learning about people. In books, I could learn about the way people interact, how they live their lives, people’s motivations, how wanting certain things made them act, what the “rules” of given situations were, how friends acted together, and so forth. Then, if I found myself in a similar situation, I had an idea of what might happen, a sort of pre-uploaded guidebook to the situation. I was gathering and cataloging human social scenarios.
It’s funny. I have a vivid and active imagination. I can create entire worlds on the page. But in my own life, it’s very difficult for me to imagine an outcome or an option that I haven’t seen or experienced before. Books likely helped me expand my understanding of the world around me and its possibilities.
Books spoke to me. I wanted to speak back. So, writing followed naturally as a way I could express myself within and contribute to the literary worlds from which I gained so much.
Story is the structure through which I understand the experience of living. The creative discipline of writing is the action through which I process my own experiences and gain understanding. I can try out scenarios, watch what happens if my characters want certain things, and deal with the frustrations and joys of living in the laboratory of the paragraph.
Writing also fits the kind of life I want to live: a quiet one, maybe even a solitary one, or at least, one with space to sit alone and think.
I think all forms of art have to do with finding connection. Art begins with a person creating, using their experience and paint or ink or the lines of their own body. When they put that piece of art out there, they’re declaring their experience, but they’re also asking a question: “Does anyone else think this too? Do you connect with me?” Every piece of art is message in a bottle cast out into the infinite sea of humanity, a question, an invitation, a potential point of connection.
Being autistic has impacted me most in social interaction and participation. So maybe in the end, I’m writing as a means to connect with people. I’m throwing out my little bottles, hoping I’m not alone up here on my bottle-throwing rock, and hoping I can help someone else feel less alone.
Even after hitting “Publish” on this post, I still don’t know how I feel about the title statement. How it’s worded, I mean. The ideas it represents are absolutely true.
On November 9, 2020, I was assessed as having met criteria for Autism Spectrum Disorder (ASD) and attention-deficit/hyperactivity disorder (ADHD). In other words (and maybe words that I prefer), I’m neurodivergent.
I know this may feel out of the blue to some people. It is to me too, in a way, but in another way, it’s an “of course” lightbulb moment, a flashpoint, where all the experiences of my life have come together to make sense.
So I wanted to have a record of what led to this point in my life to share with you all. I am far more articulate in writing than I am in person, and with the ongoing COVID-19 risk to social gatherings (and my own inclination to spend most of my time alone), I thought this would be the most efficient way to let you all know what’s been going on in my life related to my own neurodivergence.
The Highly Sensitive Person / Sensory Processing Sensitivity
Back in the winter of 2018, I stumbled across a term I hadn’t heard before, but that explained a great deal about the way I experience life: Highly Sensitive Person (HSP). This is a term coined by Dr. Elain Aron, a psychologist, scientist, and researcher, who noticed in herself and subsequently in her studies a natural inclination for about 20% of the population to exhibit heightened sensitivities to sensory stimulation. HSPs have more sensitive central nervous systems, are more easily overwhelmed by sensory input, and tend to take longer to process new information. They have a tell-tale tendency to “stop and check” before entering new situations. Another term for HSP is Sensory-Processing Sensitivity.
Here’s a screenshot from Dr. Aron’s HSP website’s homepage.
I read her book, The Highly Sensitive Person: How to Thrive When the World Overwhelms You, and marveled about how all of the areas I struggled with as a child, and continued to struggle with as an adult, could be fit under this one umbrella term. (I could go into a great deal of detail here about what in particular about my life experience matches an HSP one, but for now, I’m going to stick to chronicling the general timeline leading up to the official recognition of my neurodivergence.)
I began examining my behavior, my experiences of the world, and my past through an HSP lens. A lot of things were making more sense to me, and to an extent, I was able to modify my interactions with the world and other people to be more in line with my comfort zone, which I had been blatantly ignoring or feeling guilty about not ignoring my whole life.
But after a while, I realized something didn’t feel…right. Dr. Aron talked about HSPs as having great gifts and the HSP trait as an advantage. On paper, I agreed, but being an HSP didn’t feel like an advantage to me. It felt like, well, a disability.
This isn’t a word I use lightly. I wrestled with it mentally for a long time, but the more I wrestled the more I felt that, yes, I feel dis-abled (see this fabulous TEDTalk by Autist Jac den Houting in which she says, “I am not disabled by my Autism; I’m disabled by my environment.”) by these traits that (according to Dr. Aron) are supposed to be strengths.
I strongly believe I never would have gotten to this point of understanding if I hadn’t deconstructed the conservative, fundamentalist religious influence, mindset, and worldview I grew up practicing. Some people I know might not like this, might feel off-put, might shut me out because of it, but it’s true, and it’s important. Since about 2016, I’ve been engaged in a long, arduous process of re-examining things I took for granted as truths for my entire life. Part of that has involved learning how to trust my instincts and my lived and inhabited body knowledge. That they aren’t sinful urges to be ignored or temptations to be gutted through. After spending over 20 years ignoring intuition, pushing past my own limitations daily, it’s daunting, trying to reclaim boundaries, self-knowledge, and self-trust. But I was trying. And my lived experience was telling me that HSP wasn’t it. Not all of it. I wasn’t through learning about myself. There was more work to do.
In March 2020, I reached out to a couple of local therapists who claimed specialization in–or at least knowledge of–HSP. I figured maybe I just wasn’t understanding how to work with my HSP traits, that maybe this feeling of dis-ablement could be mitigated by picking up some tips and tricks. Then the pandemic shutdown happened, and I never reconnected with them. There were more important and distracting things going on the in world.
In the summer months, I started to pick up where I had left off. I hadn’t felt comfortable with either of the therapists I’d talked to in March, so I did more googling. I stumbled across this article, which posited that HSP traits in females could really be female Autism. Following that rabbit trail, I found other sources like this YouTube channel run by a British woman who is Autistic. Like me, Sam was diagnosed with Celiac disease, identified as HSP, and finally, sought an assessment for Autism, and found she met the DSM standards to be considered on the spectrum. I found videos like this one in which Autism expert Tony Attwood talks about the characteristics of females with “high-functioning” Autism (commonly known as Asperger’s Syndrome before the update to the DSM-5 removed this label, confusing many and robbing many of an identity they’d come to claim with pride) and of the crises unidentified female Autists go through, including anxiety and depression.
I found this unofficial list of female Autistic traits. I was shocked. I identified with something like 98% of the traits compiled.
I took online quizzes (here and here). With the consistent result: high possibility of neurodivergence and/or Autism.
“You don’t seem Autistic.”
Until August 2020, I would have wholeheartedly agreed. Turns out, the reason I don’t “seem Autistic” has less to do with Autism and my own neurodivergence and more to do with false stereotypes of Autism that are deeply rooted in decades (if not centuries) of sexism and gender discrimination that have affected the very development of the fields of medical science, psychology, and the Diagnostic and Statistical Manual of Mental Disorders (DSM) itself, the bible of psychological “disorders” used to “diagnose” the mental “disorders” we see in the Western world.
There are fundamental differences in how individuals on the Autism spectrum may behave, but until very recently, they have not been recognized. This is due in part to the fact that, when conducting trial studies and tests, psychologists have consistently chosen cis-male subjects. For more on the history of this, and info on neurodivergence in women, I highly recommend Divergent Mind: Thriving in a World that Wasn’t Designed for You by Jenara Nerenberg. This book literally was published in 2020, and would not have been available to me if I had started this research ONE YEAR AGO.
After an intake appointment in which my assessor agreed there was sufficient evidence to proceed, waiting four weeks for my appointment, four hours of testing, two weeks of waiting for my assessor to analyze the data, I learned in a video call that I met criteria for Autism Spectrum Disorder, Level 1 (the lowest level of assistance needed; the DSM-5 goes through Level 3), what would previously have been known as Asperger’s Syndrome, and in a surprise 2-for-1, I also learned I met criteria for ADHD, inattentive type.
Here’s a distinction that’s important: I was not identified as Autistic, ADHD, or neurodivergent by the experts. At age 30, I identified myself, and then sought an expert to officially reinforce what I already knew to be true.
The medical, psychological, and social systems in my life failed me.
This is especially depressing, because as a female, the world had already failed me in so many ways. I was socialized to fly under the radar. I was socialized to “get by” without accommodation, to put others’ needs before my own, and I was smart enough that I could manage. Barely. But the resulting depression and anxiety for constantly struggling to fit into a world where everyone else seemed to fit in easily made life miserable.
I would like to note that my assessor was a lovely person. She was knowledgeable about ASD in women, and delivered the results in a kind, considerate way. At one point, she told me, “There’s nothing wrong with you.” I believe this is true. But I also believe that I am not in the category of what is considered “normal.” She expressed her desire for the day when neurodivergences are understood as a spectrum, rather than disabilities, and I wholeheartedly agree.
ADHD?
I still don’t fully understand the implications of this piece. I haven’t done nearly as much research here. But I do think ASD and ADHD together may explain things that look contradictory, like why I thrive on a schedule, but also have trouble sticking to schedules.
What Now?
As I once again reframe my life experiences through these new lenses, I am heartbroken for the little girl I was, and for the ways my life might have been easier, better, happier. I am also viciously proud of myself for accomplishing things that were desperately hard for me. Singing the lead in a musical. Singing the lead in an opera. Traveling internationally. Graduating with my master’s degree. I didn’t know other people didn’t struggle this much or in the ways I struggled.
My hope is, with this new understanding of how I perceive and interact with the world, I can build a life that allows me to thrive, that makes me happy more often than sad, and that enables me to reach my highest potential.
I also hope I can bring empathy and understanding around the issue of neurodiversity and dis-ability. The experts and Autists I found online were overwhelmingly not-American, and I believe my country is behind on this issue. If you want to talk more with me about this, please reach out. The world is a big, scary, and unsure place. Caring for each other is what makes it beautiful.
*Minutes before publishing this post, I wonder if I’m making the right decision, sharing this information so soon after receiving it myself. I am convinced, though, that staying hidden, masked, and under the radar–the way I’ve been living for my whole life as a neurodivergent person–will not help me or anyone else, and that if I don’t act on the information I’ve received, I might as well not have sought clinical affirmation at all. And, I remind myself, if this makes me feel socially awkward or uncomfortable, that is nothing new. 😉
* This post was edited on January 3, 2021 to remove and reword language including the word and variations of the word “diagnose.” I no longer use the word “diagnose” in relation to my neurodiversity, as it implies an illness or medical condition. Neurodiversity is not an illness. I am not sick.
We are halfway through the year, and nothing has gone the way we thought it would. In an effort to process all that has happened in the past months, I collected and recorded what I’m calling Mantras for 2020. These are sayings that reflect the times as well as provide encouragement. I am more aware than ever how my perception of reality and my internal monologues affect my wellbeing, and wellbeing is hard to come by in 2020.
Some of these I wrote, some I picked up from current events, and some I collected from my colleagues and friends on Twitter. If a mantra is credited, you can find that contributor by clicking the hyperlink or searching the given handle on Twitter.
“Fear is the mind-killer. Fear is the little-death that brings total obliteration. I will face my fear. I will permit it to pass over me and through me. And when it has gone past I will turn the inner eye to see its path. Where the fear has gone there will be nothing. Only I will remain.” Dune, by Frank Herbert @ItsJohnDulak
Something is better than nothing. Make the best of what’s available and do the best we can while we’re able. @DOMoore9
“Nothing is more important than that you see and love the beauty that is right in front of you, or else you will have no defense against the ugliness that will hem you in and come at you in so many ways.” Anathem, by Neal Stephenson. @SciFiSherwood
I love a good artist’s statement. Hearing from others about why they pursue their craft is inspirational and thought-provoking. It also helps me clarify and understand my own motivation. I feel a connection with the artist in question, and usually hit the keyboard with a great deal more energy.
I’m currently reading The Narrow Road to the Deep North and Other Travel Sketches, which is a collection of Japanese haiku master Matsuo Bashō’s travel journals. In them, Bashō writes in haibun style, which means prose reflections and poetry stand side by side. At the beginning of “The Records of a Travel-Worn Satchel,” Bashō includes what seems to be his own artist’s statement.
In this mortal frame of mine which is made of a hundred bones and nine orifices there is something, and this something is called a wind-swept spirit for lack of a better name, for it is much like a thin drapery that is torn and swept away at the slightest stir of the wind. This something in me took to writing poetry years ago, merely to amuse itself at first, but finally making it its lifelong business. It must be admitted, however, that there were times when it sank into such dejection that it was almost ready to drop its pursuit, or again times when it was so puffed up with pride that it exulted in vain victories over the others. Indeed, ever since it began to write poetry, it has never found peace with itself, always wavering between doubts of one kind and another. At one time it wanted to gain security by entering the service of a court, and at another it wished to measure the depth of its ignorance by trying to be a scholar, but it was prevented from either because of its unquenchable love of poetry. The fact is, it knows no other art than the art of writing poetry, and therefore, it hangs on to it more or less blindly.
Matsuo Bashō, from The Records of a Travel-Worn Satchel (translated by Nobuyuki Yuasa)
I love Bashō’s romantic, and perhaps somewhat humorous, description of his own soul, and his view of it as something with its own agency. In another poem, he writes:
On to a bridge Suspended over a precipice Clings an ivy vine, Body and soul together.
Matsuo Bashō, from A Visit to Sarashina Village (translated by Nobuyuki Yuasa)
His description of his own journey as an artist dedicating himself to his craft is very valuable. The fact that one of Japan’s most accomplished haiku poets struggled with the same push and pull I and many other artists describe is encouraging: there is nothing wrong with me/us; we simply need to forge ahead.
These words of Matsuo Bashō are fascinating in themselves, but also totally fascinating is the fact that they were written down in 1687, almost four hundred years ago. Yet the connection I feel when reading Bashō is immediate. There is no time lag, no misunderstanding. Words written down and preserved are extremely powerful.
Bashō’s soul clings to the letters of a language he never spoke, never heard, and now, to this screen, to this technology he would never have imagined, like ivy to a bridge.
I love dystopian and post-apocalyptic stories. Sure, they might be based on pretty awful events (nuclear war, absolute dictatorships, inhuman scientific advancements, etc.) played out to an extreme, but for me, that’s where the interest lies. We’re 99.999% sure we’ll never have to try to survive a zombie apocalypse, so it’s fascinating as hell to watch other humans try.
Dystopian and post-apocalyptic fiction is a kind of nihilist, negative escapism in which the reader gets to imagine how the world works at its worst.
But where do these genres stand when the external world starts to look more dystopian and post-apocalyptic than the stories themselves?
This question has been whirring around in my head since early March, when COVID-19 hit my country. Schools shut down. People lost their jobs. Isolation became the new “normal.” The internet (which we already relied on heavily) became many people’s source of income, socialization, and entertainment–their world.
I love reading dystopian and post-apocalyptic stories. I don’t love living in them. None of us do. So it’s not a huge leap to imagine that we’d turn away from these genres.
However, I firmly believe that a real-life apocalypse, a real-life dystopia, will have no negative effect on the need readers have for this literature. If anything, their need will become greater.
Here’s why.
1. Catharsis
Trying to survive day to day, to find work, to stretch a dollar, homeschool, or cook with the five-odd ingredients left in the pantry… We don’t have time to truly process the collective trauma we’re experiencing. But the themes of loss that show up over and over in dystopia and post-apocalyptica allow us to access our grief, and give us space to process our own emotions.
2. Hope
I’d argue that, despite the dark clothes these stories wear, that they’re actually some of the most hopeful stories in genre fiction. The entire premise of them is that there IS life after apocalypse, and that life CAN flourish in a world where everything seems wrong. In the worst circumstances imaginable, characters fight to survive, to protect those they love, and they succeed. Modern society ends–but human life goes on. As we contemplate the apparent fragility of the lifestyles and structures we took for granted and mourn an old way of living, these stories can give us hope for a future.
3. History
As a writer of post-apocalyptic fiction, I admit, I might be a little biased. But I’m not making this up. History’s got my back. The world that lived through the real-life apocalypse and dystopia of World War II wrote about it and read about it. In fact, we’re still writing and reading about it, and that time period makes up a massive portion of the historical fiction genre.
4. Meaning-making
Writing and reading–creating and participating in art–are attempts at understanding the human experience. So now, as we attempt to understand this new apocalyptic, dystopian reality, these genres are going to be more crucial than ever.
If you aren’t ready for them in this exact moment, that’s fine. They and their creators will be there, waiting, when you are.
Allison Wall 