Librarianing

Genrefying our Junior High Library, Part 1

I am ready to begin the physical work of genrefying our junior high library and am making myself hit the pause button to do a “pre-reflection” on the process so that I can remember everything and share with others if anyone ever asks.

Making the Decision

When I started out as a school librarian six years ago, I knew about the concept of genrefying (that is, organizing a library’s fiction section by genre so that all  of the fantasy books are in one place, all of the mystery books were in another, etc.). I knew about the concept, and I hated it. In retrospect, I think there were two reasons that I disliked genrefication so much:

  • It felt very elementary, and if we genrefied the middle school library, how would they be able to find anything in a non-genrefied high school or public library?
  • As a speculative fiction fan (science fiction, horror, paranormal, fantasy, etc.) I couldn’t get over the hurdle of books that didn’t fit neatly into one genre.

I was in the same middle school library for five years, in a school with a terrific culture of reading. Every year I would get the same questions (especially from incoming sixth graders) about where to find _____ genre of books, but I used lists/collections and personal reading advisory to help them find what they wanted. Circulation was great, and the system was working okay. But as I entered that fifth year, I noticed that I was hearing a lot more about genrefying in the professional journals and conferences, and that my concerns were beginning to be addressed in ways that I could sink my teeth into. I also noticed that increasingly, the public libraries and high school libraries and bookstores in my area were organizing their fiction by genre, greatly minimizing the legitimacy of my concern about how I was prepping them for the future.

But more importantly: as I grew into being a more seasoned school librarian, I learned which of my cherished biases and beliefs to let go of.

It took time for me to relax, to be able to say to myself, “Yes, it is true that steampunk is a subgenre of science fiction under the umbrella of alternative history, and that science fiction is defined by explaining the speculative elements of the story using science rather than supernatural forces, so these superhero stories are science fiction while these superhero stories are fantasy…… but your students don’t know or care about that. Your students think superheroes are sci fi. Your students think steampunk is fantasy. And it isn’t important for you to teach the nuances of speculative subgenre to 12-year-olds. It’s important for you to get books into their hands.”

And just as I was wrapping my head around the idea of possibly trying it at that school, I ended up moving over here to the junior high.

Our library is physically small. Weirdly laid-out. Not ideal for genrefying at all; for best results, you want plenty of well-defined space for each section.

But this library also has low circulation. It’s not easy to browse. The kids aren’t proactive browsers. Their parents provide them with home libraries (which is a GOOD AND AWESOME THING, but doesn’t do my circulation stats any favors).

And when the kids did come in to check out books, probably 75% of them had the same question: “Where are the [genre] books?” And that question didn’t fade away as the year went on. They are still asking it in May even after being told repeatedly how to find the books alphabetically by author after referencing genre lists in our catalog.

In February or March, in that time of year when my creative energy begins to quietly percolate, I decided: cramped, weird physical layout be damned — we need to genrefy.

Preparations

By fourth quarter of this school year, our library was divided into the following sections:

  • fiction (along the west wall)
  • nonfiction (along the north wall and on three shelving “islands” on the north end of the library)
  • graphic novels (long shelving island adjacent to the computer lab)
  • manga (two spinning media towers)
  • short story collections (between the fiction section and the door)
  • picture books and hi-lo reads (on one of the nonfiction islands)
  • books translated into Spanish (on the same nonfiction island)
  • an “archive” section containing old yearbooks, a collection of books about state history that technically ought to be weeded but that I couldn’t bear to toss, and oversized books, on the south end of the library
  • audiobooks, on the south end of the library

My first step was weeding. My predecessor had done a pretty extensive fiction weed last year, which helped a lot, but I was able to go through and remove some unneeded duplicate copies and series that had lost popularity as well. I focused a lot of energy on weeding nonfiction, which was sorely needed not only to improve the collection but also because I wanted the space! My goal is to move the nonfiction entirely onto the three islands, opening up the north wall for fiction.

Next was planning for the actual sort. I read several accounts of how other libraries had gone about it, but I’m not sure that I’m going to do exactly what anyone else did. For one thing, I have more preference and aptitude for digital work than some, so my genrefying adventures started at my keyboard instead of in the stacks.

I started by emailing Follett and asking them to do a genre analysis report for me. I was pleasantly surprised at how quickly I received the report (like, within the same business day!) and was able to easily manipulate it in Excel to reflect the information I actually needed.

I used my Excel Sorcery skills to massage the spreadsheet and sort most of the fiction books in my collection into one of six categories: fantasy, historical fiction, horror, mystery, realistic fiction, and science fiction. I chose these six because they are the most frequently requested genres, minus “funny books,” because it seems to me that funny books exist within every genre and aren’t a genre to themselves — maybe this is another area where I have room to grow, but for now, this is where we are. I know that more genres might be “more better,” but there just isn’t enough room in our space to accommodate them. Heck, I’m honestly not sure if I can make six sections work!

That left quite a few books that Follett couldn’t or didn’t satisfactorily genrefy for me, so my next step was going book-by-book and categorizing them. Many were easy; I knew the book and could quickly identify which section kids would think to find them in. Some took some research. Some gave me such trouble that I went to social media to ask all my friends where they thought the book would fit. And after days of this, I still have about a dozen books that I haven’t decided on a placement yet.

I color-coded my spreadsheet and bought transparent colored label covers to match. Then I did more Excel Sorcery and (virtually) broke down my fiction collection into its six new divisions.

spreadsheet

This is giving me a chance to guess how much space each section is going to need, and see which of our new sections might benefit from some focused collection development. I’ve been really keeping my eyes peeled for good YA and middle grade mystery and horror after doing this analysis:

genre pie

So then we get to today. Part of me is eager and excited to get started (I think my next step will be going shelf by shelf and applying the colored label covers). Part of me is terrified. Part of me thinks this is going to be relatively easy and effective. Part of me thinks it is going to be daunting, backbreaking, and that no one will notice or care.

But all of me ran our circulation stats this morning, and they weren’t pretty. Circulation isn’t good. I’ve never had felt like such a failure as a school librarian as when I saw those stats. And it’s not comparing our circulation to my last school’s — I know that would be dumb. In comparison to previous years at this school, this year has SUCKED. I’ve always been the book-moving fairy. And this has been the worst year for fiction circulation in solid decade, by more than a thousand books. It ain’t pretty.

So I’ve got to do something different. And this is a thing I can try. Worst case, we get to remove a heck of a lot of labels and move a heck of a lot of books back into place.

Here goes nothing. Or something.

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Book Review · Librarianing · XBooks

All Systems Red: XBooks Challenge #2

XBooks Challenge #2: Award Winner

All Systems Red by Martha Wells

I stumbled upon this book from a mention or recommendation from someone I follow on Twitter, and thought it sounded like something I might enjoy, but as I began reading it I found myself wondering about its XBooks category. I’d already used my colorful title, and I hated to use science fiction yet… and I wasn’t really sure this qualified as a recommendation from a friend. Then I looked up the book on Goodreads and guess what, y’all? This book has won, like, ALL OF THE AWARDS.

Rad.

All Systems Red is the first in the Murderbot Diaries series which, let’s be honest, is what caught my eye. Murderbot? Really? Again: rad. Each book in the series is novella length, which seems to be either a hot trend in awesome speculative fiction or just something that’s particularly appealing to me lately.

The story opens without preamble on an alien planet where our narrator, who is without identifiable gender and refers to itself as Murderbot, if anything, has been assigned as the security detail to a group of scientists/surveyors. Murderbot is a cyborg and is supposed to be controlled by a governor module; however, it’s found a way to disable the module and — although still doing its job and following all orders — is secretly free. This allows it to reflexively act with greater compassion during an emergency extraction than would have been expected from a correctly-operating cyborg. The scientists — who are Good Guys — begin to suspect that there is more to Murderbot than meets the eye, but because we’ve had the infinite good and amusing fortune to have been inside Murderbot’s thoughts this whole time, it’s not news to the reader.

Murderbot is an awesome character. Wells somehow perfectly imagined the mind of a cyborg, with computer and human tendencies, and created a protagonist who is funny, sympathetic, clever, self-deprecating, and brave, and very real-feeling. Even though (as a novella) this book didn’t waste a lot of space explaining the technology, I had no problem accepting the premise and rolling right into the team’s (mis)adventures.

The more I read, the more I wondered whether Martha Wells had deliberately drawn Murderbot as an analog for an autistic adult. And yeah, that’s an uncomfortable concept, especially in the midst of #puppetgate and controversy surrounding ABA and its creator’s belief that autistic people were not actually people. So yeah, when I say, “the cyborg in this book seems autistic,” I can feel the red flags unfurling! But it’s not like that; this book doesn’t read like someone trying to say that autistic people are robotic. It reads like a metaphor for all of the difficulty that an autistic person can have understanding their identity and autonomy in a world that is not only constructed for people who think in entirely different ways, but in a world that benignly neglects and discriminates against those who don’t fit into the norm. And at no point is there a sense that Murderbot is less than — the opposite, in fact.

When I finished the book, I searched for others’ reviews and comments. I was super curious as to whether anyone else drew a similar conclusion, or if the author had acknowledged deliberate intent. I found a TON of other readers drawing comparisons between Murderbot and the autistic experience, and was also fascinated to see that there were many who read it as a metaphor for the trans experience, or the queer experience, or the immigrant experience. Y’all, it is this bookworm’s opinion that a book that speaks that clearly to that many different people is pretty damn well-done.

(And, in re-reading some of these reviews just now, I stumbled upon the NPR review that says pretty much everything I would like to say but much better, so you should probably read it.)

I wasn’t sure what I wanted to do with this page in my notebook. This is a story where all the interesting stuff happens between the narrator’s ears, and that’s not very visual… so I decided to go back through and collect my favorite quotes/lines, and incorporate them somehow. I ended up modifying a free desktop wallpaper image of a planet that felt kind of like what I was visualizing as this book’s setting, and then adding the cyborg from the front cover art (by Jamie Jones). Instead of trying to handwrite the quotes and inevitably messing up or smearing the ink, I typed them in a layer over the planetary scene and manually wrapped them around the place where Murderbot would be once all of the pieces were laid down. I screwed up the alignment a bit, resulting in an uneven bottom border that I camouflaged with shiny silver tape. Finally, I really wanted to trace over the climactic quote with my awesome black-to-red shimmer gel pen, but when I started I realized it was coming out too dark, so I just used it to highlight the first six words and left the rest alone. This isn’t my favorite page but it does the trick, and I hope that anyone who looks at it will be intrigued by the quotes and find the book to read for themselves!

Book Review · Librarianing · XBooks

Captain Marvel: Mighty Origins: XBooks #3

XBooks Challenge #3: Became a Movie

Captain Marvel: Mighty Origins by various authors

I do feel like this entry into my XBooks challenge might be a little bit cheaty. There are so many book-length novels that have been made into movies, and quite a few of those are books I really ought to have read and haven’t… so yeah, I’m feeling a tiny bit of guilt that I’m using a relatively short compendium of comic books for challenge #3.

Then again, I’ve said and will continue to say that the point of this challenge — for ME — hasn’t been “read more books” or “read different kinds of books,” but rather the entire journal-keeping adventure. And I really, really wanted to make this journal page. Sooooooo. Ta da!

When I went to see the new Captain Marvel movie, I knew about as much about the titular character as a person could know without having read any of her comics. I knew that she’d taken over the title from a male predecessor, that she’d been infused or some such with alien powers, and that there was also a Ms. Marvel who I thought also ought to have a movie. I knew that Carol Danvers/Ms. Marvel had evolved from a 70s high-cut bikini-wearing Charlies Angels type to a tough feminist icon who might be the MCU’s best bet to win the Endgame. But I didn’t know much else beyond that.

After watching the movie, I was one of many women who saw a pretty rad role model in this iteration of Captain Marvel. Without going into too much philosophizing, she seems like the hero [not-Gotham] needs right now — and frankly, the hero at least half of us deserve. Timely, kickass, tough, and vulnerable. All kinds of good stuff.

This collection of comic books includes some of the very earliest Ms. Marvel comics from 1977, much more contemporary comics, and an installment pairing up Captain Marvel with a young Muslim Ms. Marvel in a post-apocalyptic mess of a scenario. It gave me a taste of her backstory and the different ways that creators have brought the character to life over the last four decades, and a greater appreciation for the character she’s become in the new movies.

This particular selection of comics was done, I believe, with younger audiences (or “all ages”) in mind, because I got it through Scholastic. I’m sure there are some pretty dark and grim storylines and imagery that I could have encountered, and most of the stories in this collection were not only fairly straight-forward but also gave helpful nods to more familiar-to-the-average-noncomic-reader audience.

I enjoyed seeing the 70s version of Marvel grumbling about the Avengers not being around to help in the midst of a crisis (not that she needed the help) and I also got a kick out of a scene where Spider-Man and Captain America grappled a bit with her and helped her come to terms with the idea of officially embracing her title of Captain Marvel. It’s an interesting part of her character development that, in my opinion, tells us a lot about her without saying much at all.

For this spread in my notebook, I wanted to use Captain Marvel’s iconic uniform emblem as a background and then incorporate the different styles and visions for the character through the years. I decided on the more retro shades of blue and red to help the pictures pop and laid down some thick gel crayon. The star itself came from a free phone wallpaper I found online, which I scaled to match up with a double-band of gold washi tape; I embellished the star with a completely awesome gold gel pen (Pentel Hybrid Dual Metallic Liquid Gel Roller Pen, if you need one). Then I added my favorite Captain Marvel moment from the movie (and Goose, because you can’t forget Goose), Kamala Khan/Ms. Marvel ready to get to work in her gorgeous kameez-inspired costume, old-school Carol Danvers/Ms. Marvel in her bare-thighed glory, and two 21st-century images, with and without space helmet thingie.

And this time (drum roll please!) I thought through my layers and put things down on paper in the right order!

371.94 · Just Thinking · Teaching

Masks!

This topic was requested by two different people in two different ways. One friend wanted me to talk about masking, and another asked what seemed to me to be a really challenging question: “How large is the area within the spectrum which is better treated by teaching coping skills and social conformity? Thinking of hyperactive sixth graders who need physical movement, or socially awkward middle schoolers who need to learn small talk.” It took me a while to realize that this question was really about masking, too.

What is Masking?

First things first: masking (also called autistic camouflaging) is a behavior that many autistic people develop in order to function more typically in the world. It seems to be especially prevalent in girls/women, which contributes to the gender gap in diagnosis.

Masking is, put bluntly, trying to suppress your natural instincts as an autistic person to seem more normal.

Examples might include:

  • forcing yourself to make eye contact (or teaching yourself to look at a spot between the eyes)
  • forcing yourself to not fidget or rock when stressed or processing
  • suppressing your desire to talk about your passionate interests
  • practicing facial expressions, or rehearsing a laugh, so that you can react “normally”
  • memorizing scripts (verbal and nonverbal) for social conversation

Sounds Good, Right?

Okay, you may be thinking, these all sound reasonably okay. In fact, these all sound like the sorts of things therapists and special educators are working with kids to achieve! Desirable outcomes! Cure the autism! Give them a normal life!

:deep breath:

I can’t get into all of the mixed feelings and conflicting messages surrounding that in one blog post. I mean, you’re talking about The Essential Questions, about the medical model vs the social model… that’s huge stuff. Book-length stuff. And if you’re wishing right now that I would stop and address all of it, let me give you an extra credit assignment: read an article on Deaf culture, specifically the controversy over cures/Cochlear implants/etc.. Here’s a decent one if you don’t feel like searching. Ponder. We’ll discuss in class next week 😉

And I’m struggling to ground my thoughts. I want to rant and rave about society and conformity and the rat race and standardized education — stuff I’ve believed long before I knew anything about autism — and I promised myself not to write such a long post this time… yargh.

normal2Let me say this: Yes. To some degree, it is desirable to find ways to conform to social norms, if you want to (or need to) find a role in our modern society. It is a good thing for my career that I, like many many many autistic girls, semi-unconsciously studied the other children and learned phrases and behaviors and facial expressions that would make me fit in better. It is a good thing for my career that I learned to “play the game.” It is a good thing for my career that I taught myself how to be a Pleasant Inoffensive Woman Without Abnormal Interests.

We’re stuck here on this world, which currently is not built for autistic people. Lacking a different world to live on, and while waiting for/working for improvements, you’ve either got to do your best to cope and conform, or… not. And if you don’t mask, if you don’t conform, then as unjust as it is, you’re going to be othered and you’re going to face a great many social struggles.

(All this is assuming the case of the autistic person who is capable of masking to this degree. Not everyone can, whether they choose to/are pressured to, or not.)

The Problem With Masks

For an autistic person, masking or camouflaging our symptoms/traits/instincts can cause a lot of psychological and even physical harm. I keep thinking about people who were forced to learn to write with their right hands, or people who are forced to remain in the closet. That’s a lot of suppression, maybe even a lot of rewiring the brain.

According to Francine Russo’s article, “The costs of camouflaging autism,”

Nearly everyone makes small adjustments to fit in better or conform to social norms, but camouflaging calls for constant and elaborate effort. It can help women with autism maintain their relationships and careers, but those gains often come at a heavy cost, including physical exhaustion and extreme anxiety.

The thing is, these behaviors that autistic people are suppressing when they mask aren’t just nervous tics or bad habits. They have a purpose or a meaning.

For most, stimming (hand-flapping, rocking, tapping, etc.) is a way to self-regulate.

Have you ever been so overwhelmed — like, extremely stressed and behind schedule, and eight preschoolers are all tugging at your sleeves and whining, and also you desperately need to pee — that you just want to scream and punch something? If you’re neurotypical, you take a deep breath and release that urge, or maybe you step away and go find a pillow to scream into and then punch!

For an autistic person, that sensation of being completely overwhelmed with sensory input can be constant and endless, and provoked by seemingly innocuous things in their environment. And when they stim, that’s how they regulate and release that tension. That’s their yogic breathing, their punching bag. It’s what helps keep them in balance and able to pay attention and remain calm.

For many autistic people, eye contact can actually be physically painful in a way that I can’t fully understand and certainly can’t begin to describe. For many autistic people, the effort of making small talk and bland polite facial gestures will take up all of their mental processing space and completely derail their train of thought or course of action…. and then the obsessive worry, or ruminating, that they’ve been perceived as rude may rob them of sleep or the ability to concentrate on their work for days.

Another problem with masking is that if you mask too well, you may find that you aren’t given any grace or understanding when your mask slips. If no one has any reason to suspect that you have neurological differences, they’re not going to assume you meant well when you meltdown at work — they’re going to assume that you were being an unprofessional jerk. If no one can tell that you’re struggling, they’ll keep piling on and won’t offer supports.

And to be clear: just because the outside observer can’t tell that you’re autistic because you’ve learned to fake normalcy so well, does NOT mean that you are “cured of your autism”. The person who learns how to hide their autistic traits is still exactly as autistic inside as they ever were — but on top of the challenges that come with being autistic, they’re also stressed out, suppressing natural instincts, and being forced to live in a way that is completely alien and uncomfortable to them.

So… Take Off the Mask? Or…?

Inherent in the prompt of “talk about masking” or “how large is the area within the spectrum which is better treated by teaching coping skills and social conformity” is, I think, the question of whether masking is a good thing. And to get to a response to that, ultimately what you need to ask yourself is, what is your goal/preferred outcome?

And if you’re the parent or the teacher asking yourself that question, and not the autistic individual… really slow down and think about it. R-e-a-l-l-y pause and consider whether your goal is “be more like everyone else at school”… and if it is, ask yourself why. (I am a mom, and a teacher. And I am wrestling every day with this question. Not claiming to have the answers or any moral high ground. Just wanting you to wrestle, too.)

For the person with Level 1 autism or Asperger Syndrome, unless they didn’t attend school or therapies, masking is probably inevitable. After all, all people organically learn social behaviors, and the negative reinforcement of being bullied or ignored because you’re “weird” can be a powerful motivator to change. I had no idea that I was learning how to mask until decades after the fact, because I had no framework or vocabulary for that. I didn’t consciously take “how to be typical” lessons, nor would I have, but life has a way of molding us whether we see it or not.

And for that person, I think masking can be beneficial — but. Earlier, I talked about how masking was very good for my career. But it’s critical for my well-being that I code-switch from work to not-work, that I remove that mask when I can, because that’s not me and pretending that it is builds up pressure like pus under a blister.

If — and let’s be clear here; I’m not at all convinced that we should — we are going to teach our children to suppress their natural instincts in order to conform in the classroom and the world at large, then we also need to teach them to respect their needs and their bodies and their minds, and to find appropriate outlets to do the things they need to do to be emotionally and physically healthy. It’s bonkers to make stimming and other “undesirable” autistic behaviors taboo (just like, IMHO, it’s bizarre that manually clearing our noses is a taboo) when (and if) they don’t hurt anyone and are helpful to the person doing them.

Right now, full participation in American society demands social conformity. So if your ultimate goal is to fully participate in contemporary American society, well… better practice making eye contact and learn how to make small talk. But be kind to yourself. Give yourself grace, and time to be yourself and do the things that come naturally to you, lest your pursuit of “normalcy” end up causing you harm.

 

For further reading:

What Is Autistic Masking?

The Consequences of Compensation in Autism

The Long-Term Impact of Autistic Masking

The Struggles of Women Who Mask Their Autism

When I Recognized My Son on the Spectrum was ‘Masking’

Masking: I am Not OK

Autism, Masking, and Ageing: A Personal View

There’s Such a Thing as “Autism Camouflaging” and it Might Explain Why Some People are Diagnosed So Late

“Putting On My Best Normal: Social Camouflaging in Adults with Autism Spectrum Conditions” (this one is a scientific paper, for those of you who want SCIENCE instead of personal accounts)

DISCLAIMER #1: I am a student of autism, not an expert. What I write in these posts reflects my understanding as of this time in my learning journey. What applies to me/my family/my community/my perspective may not apply to you and yours. The purpose of my writing is both to share what I know (or think I know!) and to continue to learn/explore by “thinking out loud”. I’m eager to grow and open to respectful dialogue. DISCLAIMER #2: Although my goal is to be candid and open in these writings, I am also striving to respect the privacy and dignity of others. For this reason, I may switch between generalities and specifics as needed or appropriate.

Book Review · XBooks

A Beautiful Day in the Neighborhood: XBooks #5

XBooks Challenge #5: A Book of Poetry

beautifuldayintheneighborhoodA Beautiful Day in the Neighborhood: The Poetry of Mister Rogers by Fred Rogers with illustrations by Luke Flowers

I’m swear I’m really not cheating by picking a book of children’s poetry for this challenge; I read a fair amount of grown-up poetry too.

When I saw this book in my kindergartner’s Scholastic book order, it immediately grabbed my attention, and when I saw that it wasn’t a little picture book but instead 144 pages of poems/songs illustrated by Colorado Springs artist Luke Flowers, I knew that I had to have it. I mean, sure, I was hoping that my boys would like it — they both watch Daniel Tiger’s Neighborhood — but this book was for six-year-old me as much as it was for them.

I love all of the things about this book. The volume itself is beautifully bound, hefty, with lovely paper and endsheets. The fonts they used were a perfect update to the original hand-drawn titles. Luke Flowers’s illustration style perfectly captured the beloved characters and sets with a subtly retro color scheme and style, while adding in contemporary details that brought to life a vision of what Mister Rogers’ Neighborhood would look like if it were airing today.

And I was taken aback by the poems themselves. Although they are certainly “childish,” I kept finding myself pausing over a line or a stanza and thinking, Wow, what a great way to explain that to a kid who is struggling with that situation, or This would really help a socially-delayed kid figure things out, or They could use this in an elementary PBI setting, or even — shockingly, because I am NOT an early education person, I wish I were a kindergarten teacher so I could use a poem from this book each day as a bellringer and theme for the day. (I emailed all of our elementary librarians to recommend they add it to their next purchase!)

And if you were a fan of the show, you’ll be transported. Who could forget the gentle assurance that we wouldn’t get sucked down the bath drain? Or the love in Mr. Rogers’s voice when he sang, “It’s You I Like”? The flip of the shoe as he changed into his cardigan and asked, “Won’t You Be My Neighbor”? (Links go to pages from the book.)

This was a wonderfully nostalgic read for me, especially thanks to the illustration work. I turned to the spread with the poem “Mister Rogers’ Invitation” and found myself breaking into a huge grin as the details from the Land of Make-Believe set jumped out at me — especially Corney’s Rockit Factory right in the center of the picture. I couldn’t remember what in the world it was when I saw it — and lemme tell you, that’s a hard sort of thing to Google — but I could just see those dials and gauges working as clearly as if I were watching the show at that very minute. I spent several lovely moments remembering the sounds of the trolley going through the tunnel and along the tracks. It was all pretty dang rad.

So do my kiddos like it? I read a few of the poems to them in the car, and they recognized some of the phrases and informed me that this was PBS Kids dot org, which is either darling or an indictment of the use of screens in our household. And while I was making my page, my little guy (barely 3) was fascinated by the cut-out of Daniel Tiger. He kept coming back and holding it and telling me that “bear is sad” — I guess the modern Daniel Tiger has a different-enough appearance that he didn’t recognize him. I’m looking forward to seeing if my kindergartner will read some of the poems; I know he’ll be captivated by the trolley. Come to think of it, I need to show him some old Neighborhood Trolley footage. He’d go nuts.

Because the illustrations spoke so much to me, I really wanted to highlight them on this page of my XBooks Notebook and do an illustration collage. I scanned in images, used Photoshop to isolate them from their backgrounds, and then dropped them into Publisher to try to figure out the layout so I’d know how big to print them. As I was doing it, I accidentally dropped in an enormous Daniel Tiger and started to remove it before realizing I really liked the way it overlapped with other elements, so I “made the tiger bigger” and went for it. I used polka dotted washi tape to fill in the negative space (NOTE TO SELF: DO THIS BEFORE GLUING DOWN THE OTHER STUFF NEXT TIME) and added some music note washi to the trolley track. Finally I used metallic Gelly Roll pens to write a few quotations from the book. I like the way it turned out quite a bit!

Challenge 5

371.94 · Just Thinking · Teaching

Another Thing About Labels

There’s another sort of label that I reckon ought to be briefly addressed before I move forward: If you’re autistic, what are your credentials? Your bona fides? What’s your proof? And why do you even need proof?

Seems like there is another set of labels floating around: formally diagnosed (or officially, or actually) vs. self diagnosed vs. suspected, and the umbrella term: Actually Autistic.

Why Remain Self-Diagnosed?

In the online, global, English-speaking, autism community (as I’ve encountered it, which has been mostly through Twitter and Facebook, through groups and accounts run by/owned by #ActuallyAutistic adults) it’s generally pretty widely accepted that gaining an adult diagnosis can be a fraught process for a variety of reasons, including but not limited to:

  • high costs of neurological medical care in America
  • long waits/low access to neurological medical care in countries with socialized medicine (the waits can be quite long in the US as well, but I hear that as a non-critical service that adult autism screening can take forever through the NHS)
  • low access to professionals qualified to identify autism in adults
  • difficulty proving well-masked or level 1 autism in women, who often present atypical symptoms
  • low motivation due to lack of services or supports for adults who don’t require significant care
  • danger of risking health/life insurance due to having a “pre-existing condition”
  • danger of being blacklisted as a foster or adoptive parent due to having a “mental disability”
  • danger of losing ground in a custody battle due to having a “mental disability”
  • stigma and/or lack of family support
  • many people realize they are likely autistic because of a child’s diagnosis, and are too busy/stressed/overwhelmed caring for the child’s needs to pursue their own
  • some parts of the world do not recognize or diagnosis autism (I don’t know anything about this, but someone mentioned it recently so I thought I’d include it)

Additionally, there’s some question as to the validity of a formal diagnosis in a lot of cases. Unfortunately for people who like clarity and simplicity, there is no blood test for autism. To diagnose someone as autistic, caregivers (parents) and teachers complete an obnoxiously long questionnaire which is analysed and scored by a professional — NOT your general physician — to determine whether traits exist and whether they are significant enough to qualify. This is paired with observation by the doctor, but in our son’s case, that was one hour in which she was also talking to us and entering data into a computer.

My point here is, an autism diagnosis is made by a (probably allistic) stranger based on a survey and an hour in a room with you. And guess what? Digital versions, scored by computers, of those diagnostic questionnaires are available online. I’ve filled out the ones for my child enough to feel pretty confident asserting that they are functionally identical, only generally aimed at an adult taker instead of a parent answering on behalf of a child. It lacks nuance, I’m sure. And it obviously lacks the observation component and the “and what do your teachers/parents/family members think?” component. But the questions are the same.

Do I trust a computerized quiz as much as I trust a neurological specialist who went to medical school? Nope.

Would I prefer to sit down with someone who is highly educated in this field and have them get to know me over a course of several meetings, and use that observation in addition to the traditional diagnostics to explain to me exactly Why I Am The Way I Am? Yes! That would be incredible! But that’s, like, literally, not a thing.

And does it matter? Absolutely not. As a woman whose diagnosis would likely be Level 1 ASD, who has spent four decades training herself to suppress autistic traits and develop neurotypical ones… I neither qualify for nor need any supports/services. Which is good, because they basically don’t exist, unless you need significant care (adult social services, living facility, etc.). Literally the only benefit I would gain from a formal diagnosis of autism would be the ability to take a deep breath and say, “Yes, I am actually autistic,” and have the official piece of paperwork to prove it. That’d be cool. But I don’t need it. (See previous post and Captain Marvel’s commentary.) And it would almost certainly cost me THOUSANDS of dollars out of pocket, and might have negative consequences for me down the road in terms of insurance, etc..

I believe that I am autistic. I also believe that, as a woman whose [insert description from immediately-prior paragraph here], and especially one without a formal diagnosis, I shouldn’t be the loudest voice in the room. I’m not learning about and talking about autism for me, although it has been deeply therapeutic and helpful to gain that understanding about myself. I’m here for my child, who does have a formal diagnosis, and I’m here for his future community. Yes, I’m devoting a lot of words to this topic right now, but I’m doing so with the goal of advocacy. I try really hard to stay in the back of the room and hold space for people who have had a lifelong diagnosis or whose autism impacts their life more significantly than mine. I guess what I’m saying here is that it’s a matter of respect and self-awareness.

Drama. Ugh.

I suppose there are probably people out there who are aren’t so respectful and self-aware. It isn’t hard to imagine that some people might claim autism in order to excuse poor behavior or bad habits, or even as a handy catch-all for symptoms of other conditions/disorders. It also isn’t hard to imagine that there might be people out there who would claim to be autistic for the attention or because they think it’s funny somehow. There are narcissists everywhere, and delusional folks, and sad lonely bored people, and goodness knows what creative lengths people might take to get a little attention on Teh Intranetz.

As I said earlier, most of the folks I listen to online support self-diagnosis. But there are those who do not. And right now (April 2019), there’s a vocal and cranky minority (I think, I hope!) of autistic people online who have grabbed their torches and pitchforks and are attacking anyone who admits to being self-diagnosed or #SelfDx.

It’s ugly. The apparent ringleader has created a Twitter list of accounts of alleged #SelfDx users and is promoting that list as a tool to find accounts to target. The stated purpose of the list is to know which accounts to ignore or block, to maintain purity of only “true autistic” Twitter users, but if you ask this person why you are on the list, or try to defend yourself, you’ll find yourself under fire: “go to hell,” “STFU you identity hoarding idiot,” “these people aren’t very smart,” “f*** you,” “asshole impersonating my condition,” “piece of s***,” and my favorite new slur, “fauxtistic.”

It appears that their contention is that self-diagnosed autistics are consuming resources that ought to be preserved for formally-diagnosed autistics, and that they are somehow impersonating a neurological condition or disability in a what seems to be a sort of “stolen valor” situation. This is difficult to fully rationalize, because not only would a self-diagnosed person not qualify/have access to services, but if they hadn’t received a diagnosis as a child, they likely are “highly-functioning” enough to not need those services.

On Sunday, I made a considered point to contribute to a conversation on “autism Twitter” about how I had come around to my self-diagnosis. The conversation was hosted by a pro-selfDx account. I knew I’d draw attention but I did it anyway, deliberately including the #SelfDx hashtag, because I wanted to explain my thinking.

Sure enough, by the end of the day, I’d been added to the anti-selfDx folks’ hate list.

So far, no fall-out — I’m not going looking for a fight, so they’ll have to come looking for me first.

On the flip side, a lot of very nice Twitter users who embrace self-diagnosis as being valid are using the red crayon list as a way to find accounts to follow and support, and I’ve gained ten new followers in about twelve hours, so that’s something. 🙂

Why It Even Matters

This is an incredibly uncomfortable space for me to inhabit. I sympathize deeply with people who feel like their very real, perhaps very big daily struggles are being minimized by people who haven’t “earned it” in the same way that they believe they have. And that’s a big part of why I have discomfort about claiming my self-diagnosis — because I don’t want to feel like a fraud or a poseur. (Did you know that social anxiety, especially over-thinking what other people are thinking of you, and believing people are more critical of you than they really are, is an autism symptom in many women?)

If it was just someone saying, “Hey, I don’t think you are actually autistic, and I’m offended that you say that you are,” I could respect and roll with that. That’s a fair statement. I can’t even argue with it.

If it was just the very silly argument that, “Until a doctor says you are autistic, you are not autistic,” as if a doctor’s note was a magical switch that turned your brain into Autism Mode, I could just roll my eyes, laugh, and keep walking.

And if it was just cranky people making a list of social media accounts, well… that’s the internet for you. It’s a sewer.

But the thing is, there’s more to it than that. Rejecting self-diagnosis is incredibly problematic. Go back up to the top of my post and re-read the bullet list of reasons why people don’t get that formal diagnosis, and you’ll see that insisting on a formal diagnosis isn’t just “someone drawing a line in the sand”. In fact, rejecting self-diagnosis is arguably:

  • classist, because it denies those who can’t afford it
  • sexist, because women are overwhelmingly under-diagnosed as children
  • racist, because non-white people have historically been under-diagnosed as children
  • ageist, because it rejects anyone whose parents didn’t have them diagnosed as children
  • ableist, because it assumes physical and psychological ability to pursue appointments, etc..
  • mean-spirited and selfish, because really, the only resource self-diagnosed adult autistic people have is each other, and we need each other

So even though I really am not going to go looking for a fight, and I’m not going to go defend myself to that person or request to be removed from the list, I’m taking my lunch hour to write this. I don’t want to take a space at the front of the #ActuallyAutistic room. I want to sit here, in my corner, and state my truth and try to hold space for others. All I would say to that person is, We — all of us, not them and me — could have helped each other. Should have helped each other. How does exclusion help anyone?

DISCLAIMER #1: I am a student of autism, not an expert. What I write in these posts reflects my understanding as of this time in my learning journey. What applies to me/my family/my community/my perspective may not apply to you and yours. The purpose of my writing is both to share what I know (or think I know!) and to continue to learn/explore by “thinking out loud”. I’m eager to grow and open to respectful dialogue. DISCLAIMER #2: Although my goal is to be candid and open in these writings, I am also striving to respect the privacy and dignity of others. For this reason, I may switch between generalities and specifics as needed or appropriate.

371.94 · Just Thinking · Teaching

Labels and Levels and Spectrums, Oh My! PART TWO

Picking up where I left off (previous post was about autism labels).

Before I begin I am going to share this awesome graphic, with permission from the creators. It’s such a great alternative or enrichment to the idea of Autism Awareness, plus it fits in with today’s post so well!

Level Up
via http://www.itcannotbecontained.com

Levels

Today, if you receive an autism diagnosis for yourself or a loved one, that diagnosis will likely include a level. (NOTE: I realize that I’m speaking from an American perspective. Not sure if this is the same in other countries??? Maybe someone who is not in the US can comment and let us know!)

Autism levels are a positive step toward describing autism in terms of the autistic person’s experience rather than outsiders’ perception. (This article by Lisa Jo Rudy, on Very Well Health, has a pretty good explanation.) Instead of focusing on symptoms or behaviors, levels focus on support needs:

  • ASD Level 1 indicates that the person has some support needs. Our erstwhile Asperger Syndrome would fall into this diagnosis.
  • ASD Level 3 indicates that the person has high support needs.
  • And ASD Level 2 — well, that’s somewhere in between. Officially, they use the adjective “substantial”.

The diagnosis can be (should be!) even more specific and granular. Autism has three pillars: social communication, restricted/repetitive behavior, and sensory sensitivity. An individual might be diagnosed as Level 1 — requiring some support — for sensory sensitivity, Level 2 — requiring substantial support — for social communication, and Level 3 — requiring very substantial support — for restricted/repetitive behavior. (My son’s diagnosis includes two different levels for different areas in his life.)

I can’t not see autism through an education lens; my entire life has been in the public school system. When I see the levels I immediately grasp their utility to a school. A level allows the school to pencil in plans for classes, interventions, paraprofessional assistance, or special learning environments. A school is going to presume that someone with ASD Level 1 can be placed in a mainstream classroom and is unlikely to need a full-time aide, but will benefit from accommodations and differentiation. Similarly, they’re going to presume that someone with ASD Level 3 may be in a special education classroom or may require a 1:1.

Of course, it’s not as easy as that, as you’ve probably picked up from the last post. A person with autism may need a lot of support with some tasks and no support at all with others. And that need for support is fluid.

There are a lot of infographics out there that illustrate the three levels. I’ve included the DSM-5’s graphic above, as its the most professional, but all of the ones I’ve encountered have the same two problems:

  • They word things in terms of outsiders’ perception — “patient’s social and communication skills are repetitive behaviors are still obvious to the casual observer, even with support in place” or “odd, repetitive behavior that impairs daily life”
  • They lay things out on a two-dimensional spectrum, like a number-line from “not autistic” to “super-duper autistic”… which just doesn’t do the subject justice!

So I guess that brings us to….

The Spectrum

“Spectrum” is right there in the clinical name of this condition: Autism Spectrum Disorder. Autism definitely exists on a spectrum, in so many variations and combinations. But when we talk about a spectrum, we really need to stop thinking about a straight line, because autism is not a one-dimensional sort of thing.

(I’m quite good at math, but geometry was never my thing, and I’m not a graphs/charts person at all, so I’ve really struggled as I tried to find the words to articulate this. Those of you who know better, please forgive my bumbling.)

You can bump up your “envisioning a spectrum” game by plotting it in two-dimensions instead, on an XY graph. I’ve shamelessly stolen a (licensed for reuse) colorful XY graph from Wikimedia as an eye-catching example.

A two-dimensional spectrum does a better job of imagining the different ways that autism might manifest itself in an individual, because as a condition, autism doesn’t move linearly from 0-100%. Sure, the doctor may say you’re a 1 or a 3, but what does that mean? Compare ten people with ASD Level 2, and some will be great at math, and some will be awful at it. Some will be musical and some tonedeaf. Some will love trains and puzzles and look like a future computer engineer, and some will love knitting and paint and have a future in the arts. Some will have a lot of friends and some will be loners. Some will “look autistic” (ugh) and some won’t.

A two-dimensional spectrum kinda sorta represents that. You can’t just look at someone and say, they are 70% autistic. You have to look at the other measures.

Buuuuuuut….. what do we label the Y axis then? If the X axis is support needs (the current measure for levels) then is the Y axis… interests? introversion/extroversion? intellectual capability? gender? comorbid conditions? 

Yeah. Two dimensions isn’t going to cut it either, is it.

So we move to a three-dimensional model…

Ooo, that’s pretty. A rainbow of possibilities on three axes: X, Y, and Z. Your autism, represented in three different scales of intensity. (It’s not really. It’s some fancy schmancy mathematical equation. But it looks like a rainbow infinity symbol, so I’m gonna co-opt it for a few minutes.)

This is the point where the “thinking of things in pictures” part of my brain fails me. I grok, on a gut level, what this 3D graph could be trying to do in terms of describing autism… but for the life of me, I still can’t figure out how to label the three axes. We can keep support needs on the X axis. And it would make sense, if I’m working with the building blocks the DSM-5 handed me, to label the other axes according to the pillars of autism: sensory, social, and repetitive/restrictive. (Uh-oh… that’s too many axes… we’re already in trouble!)

But there are so many other factors impacting the autistic experience. Maturity. Hormones! Environment: smells, lights, clothing, temperature, ambient noise. Intervention — good and bad. Physical health. Mental health. Trauma. Hobbies. Passions. Intellectual capability. Personality type. Gender.

I am going to do something sort of awkward here, and use myself as an example. This is awkward because I don’t have an official diagnosis and didn’t have a self-diagnosis until I was in my late 30s, and I still cringe internally every time I say “my autism” because I feel a little like a fake. Plus, as an adult woman with what is probably “level 1” autism, I’m not exactly a typical case. But that’s actually kind of good for this purpose, I think — plus I can give consent! 🙂

My autism has become more noticeable to me in the aftermath of having my second child. Masking (which I’ll talk more about in another post) is known to falter under stress and exhaustion, and I feel like my ability to compartmentalize and hide my autistic symptoms is much weaker now that I’m trying to keep up with two rowdy little boys. So for me, an axis might be something like “emotional stamina.” When I’m feeling good, when I’m energized and feel supported and am engaged in my work and don’t have big problems in my personal life, I function pretty darn well. But when I’m worn thin, when I’m out of spoons? Everything slips out of gear. My executive function is never great but it completely dissolves. I lose the ability to maintain eye contact. My sensitivity to sound, light, and touch skyrockets to a point where I feel like I’m being electrocuted. I’ll start stimming (monotone humming, tooth or fingernail tapping, muscle clenching, thigh-scratching, slight rocking, trichotillomania). My social anxiety (or maybe social rejection dysphoria, a term I just learned today) goes up to eleven. My willpower and ability to make simple decisions (like, “what do you want to eat,”) plummets to zero.

Another axis could be as simple as time of day/year. The older I get, the more I’m affected by the seasons. I never used to think of myself as a summer person, but I need that sunlight now — and I’m much more easily triggered in the winter. Is that because of autism? Is it a comorbidity issue with depression — dark winter –> depression –> low spoons –> “autism flare-up”? (“Autism flare-up” is a term that I came across recently, and I SO BADLY wish I knew where I saw it! But it’s brilliant for people like me.) And looking at my son, I think it is safe to say that he is more likely to be more significantly impacted by his autism in the afternoon, when he’s getting tired.

And then there’s something that I guess you could call disruptiveness? And that’s a nebulous one, because what’s disruptive to one person in one situation, isn’t to someone else. I have a perfect career for me; it’s accommodating, it’s flexible, and it’s known for attracting eccentric introverts. I have recovery and rest time built into my year. I’m surrounded by people with some basic knowledge of special/extra needs. Really, it doesn’t get much better than this… and as a result, my professional life is minimally disrupted by autism. Now switch over to my personal life. The world does not do much to accommodate people. The laundry, dishes, dust bunnies, and toilet bowls do not care about my state of mind; the bills and paperwork and deadlines don’t either. If I can blame my executive dysfunction on autism, then yes, it has a high degree of disruptiveness on my personal life.

Gender plays a significant role — I’ll probably talk a bit about gender and autism later — and goodness knows a support system and education/coping mechanisms/therapies play a role. Maturity — DUDE. I have no doubt that if I were six years old today that I would get an autism diagnosis, and my traits or support needs would be very different than the ones I have or would have as an adult. I had much higher social communication issues as a child, and my sensory sensitivity issues have developed and worsened with age. And environment… I mean, really, environment is huge.

Maybe three dimensions isn’t enough? Maybe we need four… or five… or…?

Y’all, I really feel like we need to call in Mrs. Who and Mrs. Whatsit on this one. I think they’d do a better job of explaining all this. Goodness knows I don’t actually seem to know what I’m trying to say at all!

 

Enough for now. More later.

DISCLAIMER #1: I am a student of autism, not an expert. What I write in these posts reflects my understanding as of this time in my learning journey. What applies to me/my family/my community/my perspective may not apply to you and yours. The purpose of my writing is both to share what I know (or think I know!) and to continue to learn/explore by “thinking out loud”. I’m eager to grow and open to respectful dialogue. DISCLAIMER #2: Although my goal is to be candid and open in these writings, I am also striving to respect the privacy and dignity of others. For this reason, I may switch between generalities and specifics as needed or appropriate.

 

 

 

371.94 · Just Thinking · Teaching

Labels and Levels and Spectrums, Oh My! PART ONE

I am super low on spoons this afternoon but wanted to try to write a post anyway. I decided to tackle this topic because I’m going to refer to it a lot in future posts. That said, it has turned out to be a much bigger topic than I realized, so I’m going to break it into at least two different parts. This first one is going to focus on labels.

It’s important that I take a moment right now to say that this is a touchy subject for many people, and that my personal convictions on the subject aren’t quite as firm or passionate as some peoples’. I am, as always, writing from my perspective and don’t intend to represent the viewpoints of the entire community. I’m also trying to give an overview of what all this means, rather than trying to craft an argument. This will probably satisfy no one 🙂

Quote: If you've met one person with autism, you've met one person with autism. Printed over an abstract image of a 3D grid in colorful lights.Labels and levels and spectrums all have to do with attempts to understand, define, and most of all, articulate/explain autism. And that’s incredibly difficult to do. Why? Well, because of the very nature of autism, it’s wildly challenging to define it:

  • Every person who has autism has a different combination of symptoms.
  • Every person who has autism has a different combination of things that will exacerbate or lessen their symptoms.
  • Autism exists in a dense web of comorbidity, so what you might think of as a symptom of someone’s autism might actually be a completely different condition.
  • An individual’s symptoms may fluctuate throughout their lifetime.
  • An individual’s symptoms may fluctuate throughout the course of a day or through changing their environment.
  • Everything we have in our vocabulary for talking about autism, until very recently, has focused on the perception of the autistic person from an outsider’s standpoint, and not the experience of the autistic person.

Our commonly-used language for autism is based on how well or “normally” the autistic individual can operate in allistic (non-autistic) society. And as a result, if you have a conversation with just about anyone about someone who has autism, you’re going to be asked something like this question:

“So, is he pretty high-functioning? Or….” (with the awkward trail-off, of course).

Labels

High-functioning and low-functioning are the labels that pretty much everyone uses to describe autistic people right now.

A high-functioning autistic person might have been diagnosed with Asperger Syndrome prior to 2013. Someone referred to as low-functioning may be nonverbal, have very obvious stims, have difficulty with self-care, and need full time care.

If you think of Sheldon from Big Bang Theory, and make the popular assumption that he is autistic, you would probably say that he is “high-functioning.” This is a man with a high degree of education, a highly-skilled professional job, and a home. He does not have a caretaker helping him with toileting or bill-paying. He is obsessive and weird and regimented and geeky, maybe even off-putting, but he is functioning well in society.

If you remember back to Dustin Hoffman’s character in Rain Man (arguably a problematic movie, but I’m looking for stereotypical examples here) you might remember that he has marked visual stims, like rocking back and forth, disproportionate responses to stimuli, difficulty in communication, etc.. You might say that he seems to be “low-functioning” because he needs to live in a care facility or with someone who can be his full-time caregiver.

But did you see The Accountant? Also a problematic movie, but this one shows an autistic person both in early childhood and as an adult. And we see that as a child, Affleck’s character seems to be fairly “low-functioning”… but as an adult, is a remarkably “high-functioning” person capable of living a complicated double life. And then there’s another character in that movie — the mastermind behind an incredibly complex organization, so obviously brilliant — who turns out to be a nonverbal autistic adult. Medically, that person might be “low-functioning”…. but come on. Brilliant criminal mastermind!

Many autistic people argue that these labels are uninformative and harmful.

They’re uninformative because they don’t do a good job of explaining the range of that person’s abilities and potential, and because they don’t take into account the fact that many “failures to function” could be prevented through accommodation. (For example: an autistic person may lose their ability to speak and may become agitated and “low-functioning” in a particular room, but if you turn off the whining fluorescent lights that are bothering them, they can re-center and have a “normal” interaction.)

And they’re harmful because they lock people into boxes that they don’t really fit into — but more importantly, because they frame the way outsiders see that person. When you tell someone that little Noel is low-functioning, they begin thinking of the things Noel can’t do, and the ways that Noel is strange, and the inconvenience Noel is going to cause, and the concerns they have about Noel’s participation. And if you tell someone that little Noel is high-functioning, they are underprepared for the meltdown or loss of “functioning” ability that even the most “highly-functioning” autistic people experience from time to time.

This morning, the dentist (this is why I’m low on spoons) asked my husband and I whether our son was high-functioning. What’s the right answer? At that moment, our little boy was happily playing with his tablet and had a calm and coherent conversation with the dentist. A few minutes later, when we took him into a strange environment with bright lights and weird smells and the knowledge that someone was going to look inside his mouth, things deteriorated. And a week ago, I had the same question from a mom at a play area… and in the space of time it took me to try to answer her, we witnessed him at his least articulate and least “controlled,” and at his “calmly discussing trains with an adult and reading things several years above his grade level”. Labels don’t fit our kiddo very well, and they probably don’t entirely fit the autistic people you know, either.

(Yes, I know that there are autistic people who have seemed to be consistently low-functioning for their entire lives. It’s complicated. I’m in no way trying to discount their experiences. Just trying to illustrate the fact that this is all hard to pin down.)

Why Labels Persist

I think that labels persist — and that the general population shouldn’t be condemned for using them — for a variety of reasons. The main one is that we haven’t educated anyone well about why labels are problematic, and we haven’t produced a viable alternative (or at least, not one that fits on a bumper sticker or a medical alert bracelet).

I don’t use the high-functioning and low-functioning labels unless the person I’m talking to uses them first, and then I do use them because it’s a shorthand that I can use as a bridge to tell that person a little more about how limited those labels are. I don’t correct the other person, but I explain how function will vary in different situations. I hope they walk away realizing that it isn’t as simple as they’d thought. I don’t try to make it into a fight with random strangers, because:

Humans of all neurotypes have an innate need to categorize. It’s what we do. When we took away the Asperger Syndrome diagnosis, we found ourselves without a way to differentiate between “the kid who seems kind of weird” and “the kid who spends most of his day in a special classroom and doesn’t speak”, or “the adult who seems kind of different” and “the adult who lives in a special care facility.” People who really understand autism know that those descriptions above may be temporary or fluid, but most of the kids in that school or people in that community aren’t going to have that level of understanding. When we try to use the exact same six-letter word to describe such an enormous range of experiences, that’s incredibly… what? Unclear? Frustrating? I find it frustrating and confusing, so I can only imagine how someone with low stakes in the whole situation might just shrug and use the shorthand.

Also, Labels

One of my first identifiable symptoms of autism was sensory processing disorder, or “sensory defensiveness,” as I first encountered it.

I cannot begin to tell you how many tags I have cut or torn out of my clothing.

The day that they started selling clothing with printed-on-the-fabric labels, the heavens opened up and unicorns excreted golden confetti all over my life.

Labels inside shirts, etc., are essentially little fabric knives designed to cause me incredible pain and insanity. And that’s an incredibly common complaint among autistic people.

So yeah. Autistic people don’t like labels? I dunno. It was funny in my head when I started writing it. I need a nap.

Part two coming soon. I’ll link here when it’s posted.

DISCLAIMER #1: I am a student of autism, not an expert. What I write in these posts reflects my understanding as of this time in my learning journey. What applies to me/my family/my community/my perspective may not apply to you and yours. The purpose of my writing is both to share what I know (or think I know!) and to continue to learn/explore by “thinking out loud”. I’m eager to grow and open to respectful dialogue. DISCLAIMER #2: Although my goal is to be candid and open in these writings, I am also striving to respect the privacy and dignity of others. For this reason, I may switch between generalities and specifics as needed or appropriate.

371.94 · Just Thinking

An Autism Glossary

I’ve been posting some autistic-created memes and other work on my social media accounts, and occasionally get a comment asking for help understanding some of the terms used. It’s easy to forget that the jargon I’ve internalized over the past few years is, in fact, jargon and not vocabulary that’s out there in common use. Since I’m probably going to use some of those terms in the next few weeks, I thought I’d do an introductory-level glossary.

A caveat: My expertise in creating this glossary is through “life credits” and through a lot of personal reading/research. I don’t have a degree in this field. These aren’t intended as technical definitions, and they’re not deep definitions — I’m just trying to lay out the vocabulary in layman’s terms.

To kick things off, I have to share my favorite autism-related word. In 2017, a Māori man working in linguistics and the medical health field in New Zealand was working on developing Māori words for newer concepts. Inspired by a lifelong friend with autism, the man (Keri Opai) came up with the word Takiwātanga to describe what autism really was — not a clinical definition, but a descriptive one. It’s been warmly embraced worldwide, and there are a lot of images online with the definition, but I wanted to make my own, incorporating some traditional Māori wood carving into the image:

takiwatanga: in my/our/their own time; in my/our/their own space

And now, on to the glossary. Let me know in the comments if there are any other terms you’d like me to add!

Describing People

autistic: Someone who has autism; may be verified through an official diagnosis or self-diagnosed.

allistic: Someone who does not have autism.

ND/neurodivergent: Someone who has a non-typically functioning brain due to any combination of factors. The neurodivergent label is most commonly associated with autism but is also applied to ADHD, OCD, Tourette’s, dyslexia/dyscalculia, etc.. The use of this term is meant to de-emphasize these conditions as being disorders in preference to considering them differences.

NT/neurotypical: Someone who has a typically-functioning brain (that is, does not have autism, ADHD, etc..)

autism levels: Currently, autism is diagnosed as either level 1, level 2, or level 3 (or a combination). This expresses the range of support needs from low (level 1) to high (level 3).

functioning labels: “High functioning autism” vs. “low functioning autism” has been commonly used as a way for people to try to explain how they perceive an autistic person’s symptoms. This has increased in usage after Asperger’s fell out of use, as a way to try to differentiate between the wildly disparate manifestations of autism — again, as perceived by allistic people. Most autistic people discourage the use of functioning labels because over the course of a lifetime, or even from hour to hour or task to task in a single day, an autistic person may have very different functioning levels. (For example, an autistic adult may be able to hold a professional job and be integrated seamlessly into most aspects of the community, but may be unable to drive and may require extraordinary reminders to pay bills and take showers.)

person-first language: Describing a person with a disability as just that – a person with a disability. (For example, “people with diabetes” instead of “diabetic people”.) Most of us (especially those in education or social services) were taught to use person-first language when referring to people with disabilities or diseases because “the disability does not and should not define the person suffering from it.” Some in the autism community prefer to use person-first language and would say “I have autism”.

identity-first language: The opposite of person-first language; in the example above, “diabetic people” is identity-first. This is generally not the preferred usage except in three communities. Many people in the Deaf community, Blind community, and autism community prefer identity-first language because they don’t consider it a disability but rather just an integral part of their identity. They would argue the example that you wouldn’t say “a person with Blackness” or a “a person with lesbianism.” Many people in the autism community prefer to use identity-first language and would say “I am autistic” or even “I am an autist” (the latter being more common in the UK and Australia than in the US).

Conditions & Diagnoses

autism: According to the DSM-5, autism is “a complex developmental condition that involves persistent challenges in social interaction, speech and nonverbal communication, and restricted/repetitive behaviors. The effects of ASD and the severity of symptoms are different in each person.”

ASD: Stands for Autism Spectrum Disorder. Common in medical, educational, and parenting settings; becoming less common in autistic communities due to the word “disorder”.

Asperger Syndrome: People around my age and older likely knew this to be a “mild form of autism,” or “high-functioning” autism. This was an official diagnosis from 1944 until 2013, when the American Psychiatric Association removed it from the DSM. People with the same symptoms seeking diagnosis today would be diagnosed with level one autism.

SPD: Stands for sensory processing disorder, in which people experience hypersensitivity or de-sensitivity to sensations. Someone with SPD may find “normal” light and sound too bright and too loud. They may find certain clothing or different kinds of touch to be painful. They also may have difficulty with balance, personal volume control, physical boundaries/touch intensity, etc..

comorbidity: The presence of multiple co-occurring conditions. Autism has a high prevalence of comorbidity with various conditions and medical issues.

Behaviors/Symptoms

nonverbal: Does not use spoken language in a way typical of (hearing) people. Being nonverbal includes a wide range, from being completely mute or selectively mute, to being able to speak using memorized or “scripted” phrases, or even being generally verbal but occasionally losing the ability to speak out loud (sometimes called “going nonverbal”) under stress. Nonverbal people often can learn to communicate extremely fluently through sign language, typing, picture-boards, or special computer apps.

stimming: Short for “self-stimulatory behavior.” Many autistic people have physical or verbal stims, such as hand-flapping, rocking, spinning, repeated sound effects/words, etc.. Fidget toys like spinners, clickers, putty, or even something like yarn or paperclips are often very helpful. Stimming can also include wanting to pet or squeeze certain textures of fabric, looking at things that sparkle or shimmer, dancing, humming, tooth-clicking, etc..

meltdown: While a meltdown may look like a tantrum, it has a distinct difference: A meltdown is an involuntary response to overwhelming and unbearable stimuli (whereas a tantrum is a voluntary response to frustration). Because of this, you can’t stop or lessen a meltdown through threats, punishment, or removing the audience. Think of a meltdown in terms of vomiting: it just has to all get out. Autistic meltdowns can happen to people of any age, although many adults have learned coping mechanisms to help them avoid public meltdowns.

shutdown: More common in autistic adults than in children, a shutdown is another involuntary response to overwhelming and unbearable stimuli. This may look and feel like a depressive episode (needing to retreat into solitude/bed/etc.) or even like an absence seizure. Someone in shutdown may lose the ability to speak and may experience paralysis.

echolalia: A repetitious, “meaningless” vocalization. This could include babbling or sound effects but is generally used to describe mimicry of words, phrases, or even long passages of text. (For example: an autistic child who repeats phrases from Paw Patrol episodes, seemingly out of context, without an apparent intent to communicate anything.)

hyperlexia: A significantly precocious ability to read, usually very advanced of age/grade level — paired with a significant deficit in the use and understanding of verbal language and in social relationships. A child with hyperlexia may be able to read complex passages of text very fluently but may then be unable to tell you anything about what they read.

ableism: The disability analogue to racism or sexism.

DISCLAIMER #1: I am a student of autism, not an expert. What I write in these posts reflects my understanding as of this time in my learning journey. What applies to me/my family/my community/my perspective may not apply to you and yours. The purpose of my writing is both to share what I know (or think I know!) and to continue to learn/explore by “thinking out loud”. I’m eager to grow and open to respectful dialogue. DISCLAIMER #2: Although my goal is to be candid and open in these writings, I am also striving to respect the privacy and dignity of others. For this reason, I may switch between generalities and specifics as needed or appropriate.

371.94 · Just Thinking

Why Do I Care? Introducing Myself

In case you’ve stumbled upon this corner of my mental library and don’t actually know me in person, and are about to be inundated by a bunch of autism-related posts (hopefully), I thought I’d do an introductory post about why this is an important subject to me. This may be a little rambly because I’m writing it between putting out standardized-testing fires at my school, and won’t have much time/energy for editing, but if you stick with it there might be something interesting in there.

Your TL;DR version is: I have an autistic child, am probably autistic myself, and have had autistic friends and students my entire life.

Before I Had Kids

Growing up, “autism” wasn’t really something that was on my radar. I don’t think I actually heard the word until I was in middle school, and overheard some teachers talking about how one of the autistic students in the special education program was really reacting positively to sitting in/listening to the band class’s rehearsals. It piqued my interest because I was very gung-ho for band and liked the idea of music being helpful to kids with extra needs.

It didn’t occur to me until much later that I’d been surrounded by autistic kids for years. In first grade, the little boy who shared a desk-duo with me had some developmental issues. I think they put him next to me because I was advanced academically, and a girl, which they may have hoped would be a calming influence. (Joke was on them, though; I was a very not-calm kiddo.) In retrospect, this boy — who became a de facto friend through proximity if nothing else — was clearly, clearly autistic. But that’s not what they called him. Again, overhearing teachers, I learned that my friend was “socially r*******” — the official term used in that area at that time, meant as a diagnosis rather than an insult.

[EDIT: I kept coming back to the previous paragraph in my head last night, wondering if I should explain why I felt the need to include the R-word thing… I felt like it was important to include because it shaped my notion of what “kids like that” were for years, and even as the R-word became clearly distasteful and fell out of medical usage, I still remembered and considered the notion of being socially delayed/impaired as opposed to academically delayed/impaired. In a way, overhearing that icky diagnosis was really helpful for my future understanding of autism. I also wanted to include it to show the contrast in how schools/the general population talked about this sort of thing just within my lifetime.)

I lost track of him as we ended up in different classes and I switched schools. Being in TAG (GATE, G/T, whatever) classes meant that I had a lot of very nerdy, intense kids, some of whom — again, in retrospect and through the lens of an armchair diagnostician — were fairly obviously on the spectrum. The people I seemed to get along with best as I moved into middle and high school were, by and large, kids with autistic traits.

Years passed, and I became a secondary (grades 6-12, or ages 11-18ish) teacher. Teachers will tell you that they don’t have favorites, but it’s my experience that most teachers have a sort of student that they click better with, and a sort of student that they do not click well with. I discovered that as a teacher I felt the most effective and connected to my students who were “on the fringe”… including, in many cases, autistic students. Although my formal training in special education topics was incredibly thin, and my support often even thinner, I tried to be as well-equipped as possible to support those kids. But I was flailing in the dark, relying on empathy and good intentions and gut instincts. I probably screwed up more than I’d care to imagine. I hope I did more good than harm.

Having Kids

While I was pregnant with our oldest kiddo, my husband and I had a couple of conversations about autism. There had been some news stories about Silicon Valley’s reportedly high incidences of autism floating around, along with the theory that very bright parents had an increased chance of having autistic children. Both of us acknowledged that we each had autistic character traits, as did various members of our family. We’re both “highly gifted” (to use school parlance) with an odd combination of technical and artistic gifts, all of which seemed to have anecdotal correlation with autism.

And along came H. H was an awesome baby. Being novice parents, we didn’t quite grasp the fact that most infants/young toddlers weren’t quite as independent and studious as our kidlet. We didn’t think too much of his insistence on rocking/swinging all night, beyond the concern that he was burning out the swing’s motor as he got heavier, and the long nights his daddy spent pacing with him across the living room. It was clear that he was very intelligent. At an age when most babies were just figuring out that books weren’t edible, H knew which way was “up” and which way to turn the pages. Things like that.

But H didn’t start talking at the expected time, and he didn’t point at things or clap or wave. He was very interested and aware of other people, was emotional and sympathetic, made eye contact, laughed and smiled and recited long songs and poems and television scripts by rote… but he didn’t communicate in a typical way. And he got older, and more frustrated at our inability to understand him, and more frustrated at the world’s unwillingness to bend to his will, and things began to get a little hard to ignore.

H started early intervention preschool when he was 3.5 and attended 3 half-days a week for a year and a half. They taught him the function of language and how he could use his hands and words to explain what he needed, and it was amazing. He started kindergarten this school year and is almost entirely in the mainstream classroom with a 1:1 aide. He still has some significant differences or deficits in social communication and skills and some other areas, but has high academic skills and is thriving.

We received H’s formal diagnosis of autism this winter. He is officially diagnosed with level 3 autism and level 2 autism, in different areas of his life; I’ll explain more about the levels in another post.

Thinking About Me

This has definitely been a journey for me as a parent (and an educator) but it’s also been a journey as a person, because the more I learn about autism and how it presents in women, the more I realize that I almost certainly am autistic myself. I’ll save the details of that for another post, because I think it’s an interesting subject (women and autism, not me) but I’ve grown comfortable enough with this idea that I identify, quietly, as #ActuallyAutistic in the online communities I participate in (or at least, those that are open to self-diagnosis).

Some of you know me in person and are making a face right now that says, “Wait, what?” You’re thinking of how I can be very personable, very capable, great with crowds, etc.. You’re thinking that you’ve never seen me stim (repetitive movements — the stereotypical hand flapping or rocking) or become mute or have a meltdown. I’ll go into all of that in greater detail in a later post, but here I’ll just say that I am probably “level 1” autistic (what you would have known as Aspergers), have had years of practice at what autistic people call “masking,” and that autistic women tend to be especially good at “blending in” with non-autistic behaviors.

Will I seek a diagnosis? Probably not. As much as I would love the certainty and the “bona fides”, it would cost a great deal of money, take a lot of time, and might cause issues with insurance (pre-existing conditions and other such nonsense). There’s no reason for me to be diagnosed as an adult; I don’t need special accommodations at work (or at least, not in my line of work) or anything like that. Really, the only real reason for me to get a diagnosis would be to back me up so I don’t feel like a fraud or a poseur when talking about my experiences, and you know what? I’m a grown woman, and to quote Captain Marvel, “I have nothing to prove to you.”

I’ve taken a few different online diagnostics that are supported by medical professionals and are very similar to (or identical to) clinical diagnostics, and they all confirm my suspicions.

Now, am I 100% convinced? No. In a later post I’m going to talk about comorbidity, which is an ugly word for a fascinating medical concept. In short, the common-to-autism traits that I possess are not unique to autism, and could be explained by adult ADHD, anxiety, thyroid issues, PTSD, borderline personality disorder, or plain ole “introverted and intelligent”ness. But given what I have learned, and a lot of thought and reflection, I think it would be reasonable to expect that if I were to seek an official diagnosis I would receive it.

Anyway, there’s my long little rambly introduction. I think I’m going to log off now before I get tempted to write another few paragraphs, or delete the whole thing and forget about this whole experiment! As always, I’ll leave you with this, and hope that you will ask questions in the comments here or on my FB page:

DISCLAIMER #1: I am a student of autism, not an expert. What I write in these posts reflects my understanding as of this time in my learning journey. What applies to me/my family/my community/my perspective may not apply to you and yours. The purpose of my writing is both to share what I know (or think I know!) and to continue to learn/explore by “thinking out loud”. I’m eager to grow and open to respectful dialogue. DISCLAIMER #2: Although my goal is to be candid and open in these writings, I am also striving to respect the privacy and dignity of others. For this reason, I may switch between generalities and specifics as needed or appropriate.