Autistic Author, Artist, Advocate, and Speaker

Category: Uncategorized (Page 1 of 2)

Creating Your Sensory Profile

A man stands in a colorful, rainbow-lit hallway with vibrant and fractured light reflections on the floor and walls.

Before we can understand our triggers or suss out the accommodations we need, we have to understand our sensory profiles. Autistic people are not one-size-fits-all. We have different sensory needs. Some senses may be hypersensitive, some hyposensitive, and some a combination: hypersensitive in some ways and hyposensitive in others.

What follows is my own sensory profile. If you’d like to make one of these for yourself, there’s a 31 minute long YouTube video where Thomas Henley walks you through the Sensory Profiling Test:

And here are my notes I made while watching the video. Read on if you’d like to know me better, like to see how I structured my notes, or if you’re just curious about what one autistic person’s sensory profile looks like. (This post is also easier for me to find if I want to look over my notes again.)

I’d recommend writing notes like this out while you’re watching the above video. The first time I watched it I thought I could just hold it in my head: hyper in this category, hypo in that, etc. There is just so much information in Henley’s video that you’ll thank yourself for writing your own details down.

Visual Sensitivity

Related diagnoses: I have Non-24-hour Sleep-wake Syndrome, which has many causes and takes many forms. My particular variety appears to be under sensitivity to the circadian cues of light. I have to treat it with lots of bright light

Hypersensitive: not particularly (with the exception of motion. Things or people moving around a lot is stressful for me.)
Hyposensitive: while I do prefer things to be clean and orderly, clutter doesn’t stress me out unless it’s just in the way or I can’t find something. Objects can be harder for me to see, especially complicated objects. It can take me longer to figure out what a photo is. When I walk into a room it can take a while for my brain to sort out where the people are. My depth perception is very challenged. I have learned ways to figure out how close cars are and how fast they are moving, but if I only depended on my depth perception I’d still have no idea when it’s safe to pull out into traffic. I do enjoy very detailed art, Byzantine and busy.

Auditory Sensitivity

Related diagnoses: Central Auditory Processing Disorder – I have a hard time understanding speech, like a “dyslexia of the ear”. Vestibular Hyperacusis – My brain translates particular sounds (mainly high pitched sounds) into motion, almost like a synesthesia. So things like whistling tea kettles make me sea sick.

Hypersensitive: Loud noises definitely rattle me, especially loud and high pitch. I do enjoy loud music when I choose to play it myself, as Henley mentions. I don’t have the “cocktail effect” — I can’t hear conversation in a room that has a lot of auditory clutter, like a coffee shop or a classroom where the professor has divided us into small discussion groups such that there are always at least three people talking at once in the room.
Hyposensitive: I do enjoy drumming, being in drum circles, making music. I think the hyperacusis has a lot to do with it: for example, I hate being in drum circles with claves and if there are claves I will try to sit as far away from them as possible because they make a high pitched sound striking together that is very painful for me, but the deeper pitch of drums is very satisfying.

Olfactory Sensitivity

Hypersensitive: I am super sensitive to smells. I have had to leave restaurants because the first thing I smelled when I walked in was the trash in the kitchen. I involuntarily step away from people with too much cologne. I feel very nauseated by cigarette smoke but I rarely say anything because I was a smoker for about 20 years and don’t want to come across as judging or shaming smokers.
Hyposensitive: not so much. I do enjoy incense, but wouldn’t like it too concentrated in a closed room.

Gustatory Sensitivity

Note: it really surprised me to realize that I’m hypersensitive to smell but hyposensitive to taste. I’d been taught in school that these two senses are intimately linked, almost two aspects of one sense. My different sensitivities tell me that smell and taste are two very different senses after all.

Hypersensitive: some food textures bother me but food flavors rarely do.
Hyposensitive: I like strong flavors and spices. I used to eat bird food and cat food as a kid. I do eat a lot of samefood, but that’s more because variety just isn’t that interesting to me. I forget to eat sometimes. It’s easier to feed myself if I have standard things I can grab without thinking much. But I am very open to trying all kinds of different foods.

Somatosensory Sensitivity

Hypersensitive: I don’t enjoy a light touch, especially sudden and unexpected light touch. It feels awful and the feeling lingers for a long time. I don’t like brownies with nuts in them because texture. I have become more adventurous with burgers but as a child I just wanted a plain cheeseburger because that sort of melts as you eat it but a lot of the toppings are crunchy and I don’t like to mix crunchy and smooth in my mouth.
Hyposensitive: I have a very high pain threshold. I have a history of self-harm (head and face slapping, mainly) during meltdowns. I have a lot of biting and chewing stims. I love weighted blankets or super tight hugs or being laid on for deep pressure. I touch leaves and walls and railings and such a lot as I walk by. I love swimming and hot tubs and I do enjoy some tight clothing but tend not to wear a lot of tight clothes because of other sensitivities.

I feel I’m similar to what Henley describes: hypersensitive to light touch and hyposensitive to deep pressure. (Mechanosensory variation)

Vestibular Sensitivity

Hypersensitive: not that much (except the visual thing about fast moving things I mentioned above feels vestibular)
Hyposensitive: I have terrible balance. I loved rollercoasters when I was younger but I can’t ride them anymore because of my EDS (I have gotten whiplash too many times from rollercoasters because of my weak collagen). I love travel on bicycle, car, train, boat.

Proprioceptive Sensitivity

Hypersensitive: I sometimes sit in weird positions. I keep some distance from people when walking but it’s because of my vestibular sensitivity: I have terrible balance so I step on and run into people a lot if I walk too close to them.
Hyposensitive: I love chewy and biting a lot. I have TMJ, so it can be problematic, but I would love to chew giant wads of gum all day long if my jaw would allow it. I am super clumsy and bump into people and things all the time. It’s normal for me to find mystery bruises all the time where I bumped into everything and didn’t even notice it. I have to look down a lot as I walk so I don’t trip over things or fall down from being too disoriented.

Stims Recommended for my Hyposensitivities:

Visual: colorful lights, spinning lights, mirrors, kaleidoscopes, brightly colored objects, galaxy lamps, flicking fingers in front of your eyes, satisfying videos, lava lamps.

Gustatory: mints, gum, sour fruits, meals with lots of different flavors, Asian cuisine, flavored water or juice to keep up with hydration, chili powder.

Deep Pressure Somatosensitivity: acupressure rings, fans for thermoregulation, tiger balm, rubber bands to snap on wrist, iced or hot food or drink, head scratchers and back scratchers, fidget stimmers, weighted blankets, tapping, hugs.

Vestibular: trampoline, climbing, gymnastics, head tilting, car trips, sensory swings, wobble cushions.

Proprioceptive: flapping, rocking, gym or sports, stretching or yoga, laying on the floor, balance board or rocking chair at desk, gum and other chewing things, tensing and untensing muscles, pressure related items for massage.


Henley says that stimming with your hyposensitive senses will help you stay regulated while stimming with your hypersensitive senses can bring you sensory joy. He promises to talk more about hypersensitivities in the next video (this video is part one of a three-part series.)

I hope seeing me go through my own sensory profile has been helpful for you in some way. Make your own notes about your sensory profile and see where in your life you are already doing things that regulate you and where you might want to add some sensory stimulation for your hyposensitivities.

Autistic Poetics: Drown My Eyes

I’ve just read Autistic artist and researcher, Elinor Rowlands’ new article, “Beauty in the Gothic: Forms of Autistic Aesthetics” in Ought: The Journal of Autistic Culture. My first response is that I am blown away by Rowlands’ art and want you all to go savor what is linked in to their essay. My second response I share here: Rowlands’ work adds to the body of writing that validates my own work.

[image: artwork of a person with flowing hair that blends into tree branches and natural elements, contemplative, reading a book. Generated by MidJourney on the prompt “autistic art and literature”]

I write in trees and snails and fungus and nourishing rot

When I was first told I’m Autistic and I was going through that phase of re-examining my entire life through a new lens, I thought, perhaps, I don’t write like an Autist. Information was hard to come by back then, but what I’d seen so far suggested that Autistic people aren’t creative, don’t use metaphors, have very rigid, noun-centered communication styles. 

My writing often pulls images from the natural world. I rake through the lush loam of my imagination, turning over trowels full of thoughts, unearthing the connected roots of disparate trees, thick trunks of information contributing to the mycelial tangle of ideas. 

As it turns out, my writing is very autistic. I also write extremely long sentences, indulge in comma splices, sentence fragments, multiply nesting parentheses, and intentionally repetitive phrases. I could stim on the word “and” for an entire page.

These elements are not just stylistic choices; they reflect how I experience and interpret the world. Too often, editors remove these elements, standardizing my words, lining my writing up with grammar school style guides, thinking they’re making my work more readable. Editors, especially (though not always) allistic editors, want to make my writing more “streamlined” and “normative” They’re red-penning and erasing my identity as it manifests through my words. 

My repetitive phrases are like stimming in writing—they bring me comfort and help me communicate more authentically. And while I worry about my nature metaphors, fearing they’re as overblown as the interior decorator in the film, Devil’s Advocate, gushing about the “undulating acanthus leaves”, my connection to the body of my Earth is identity-level. These are Autistic ways of being on the page. This is my voice. 

Elinor Rowlands’ “Beauty in the Gothic: Forms of Autistic Aesthetics”

Elinor Rowlands’ article explores how autistic artists use stimming and nature to express themselves. They talk about stimming as an artistic methodology. Rowlands says, “Stimming itself connects beauty or art into the echo of the self, seeking out vibrant colors and wild landscapes such as spread out beaches with rough tides breathing on the sand”. Those words lap against my shores. Writing is fullbodymind work for me and the ebb and flow of the wild places wash words through my body in cold, brackish streams.

Rowlands also writes about intuition in Autistic artistry. “For autistic artists who use stimming in their artwork, intuition plays a key role”. This is so true for me—my intuition guides my writing, and I don’t know what words I will use until they appear on the page, channeled through the stim of my fingers on the keyboard, the words pounding through my bloodbeat. When Rowlands says, “Stimming becomes a source of power and magic, revealing ancient languages sourced by embodiment and bodies, historical chants and new geographical worlds”, they have sent Autistic ways of meaning-making afloat. Their work lands dead center of my writer’s altar.

Julie Brown’s Writers on the Spectrum

Julie Brown speculates autistic influences in literary writing. Brown notes, “Verbal repetition is well established as both a vital feature of autism speaking and a vital feature of literary and scholarly writing”. It’s not just a quirk or bad writing, but a meaningful part of how I embody on the page.

Brown also looks at writers using nature metaphors through an Autistic lens. She mentions, among other references, how Thoreau’s detailed observations of Walden Pond reflect his sensory perception. Brown calls this connection to nature Autistic, writing specifically about sensory-rich descriptions found in the works of autistic authors and authors Brown speculates as having been on the spectrum.

Julia Miele Rodas’ Autistic Disturbances

Julia Miele Rodas’ writes about Autistic voice from the perspective of poetics. Poetics is the study of the art and technique of crafting language. Poetics maps the stylistic elements of language onto deeper meanings and modes of communication. 

Rodas emphasizes the importance of verbal repetition and echolalia, which are often misunderstood, as distinct elements of Autistic poetics. She writes, “Verbal repetition offers all the joyous potential of LEGO blocks: why build detention centers when, given autism’s ‘poetic proclivity,’ people could use repeating forms and components to compose villanelles?”. I find this reframing empowering with respect to my own writing and validating the ways I engage with the repetition of my Autistic friends who are more vocally echolalic than I.

Rodas also talks about stimming as an artistic expression. She writes, “The autistic manner of speaking is once again constructed as threat and challenge, ejaculation, obscenity, rudeness— all one”. The directness, urgency, and repetition of Autistic speech and writing are devalued by those who don’t understand our poetics. 

M. Remi Yergeau’s Authoring Autism

Where Rodas examines the poetics of Autistic speech, Yergeau uses the lens of rhetoric to explore the value of Autistic stimming and repetition. They argue that stimming is a meaningful form of communication, writing, “Stimming, also known as self-stimulation, is an expression of embodied autistic semiosis that communicates sensory significations otherwise pathologized within neurotypical semiotic domains”. 

Semiosis is the process of creating meaning through signs and symbols. One Autistic friend communicates by playing a song over and over at someone, meaningful communication embedded in the lyrics. A friend’s son plays videos of commercials to tell his mother things. I have a friend who repeats a comforting litany of phrases, seeking engagement with others who will go through the script with him when he is feeling anxious. These stims and repetition are communication, are meaningful. Of course our art is structured from similar drives. Why wouldn’t it be? All art — not just art that uses language — is communication.

Yergeau also discusses the importance of repetition in autistic rhetoric, saying, “Rhetorical schemes are inventive schemes, ways of coming to knowledge through habit, compulsion, or echoing”. I repeat because it’s soothing. I repeat because it has artistic merit. I repeat because it’s a way to communicate that cannot be accomplished without the repetition. I repeat as a way of coming to knowledge surrounding that idea around which my repetition spirals.

Ralph James Savarese’s See It Feelingly

Savarese, English professor and the father of Autistic poet D.J. Savarese, writes about his experiences reading literature together with autistic readers. Savarese highlights how rhythm and repetition in literature can provide comfort and a sense of order, much like stimming. He writes, “At least one study has shown that metrical poetry recitation—specifically, hexameter verse—‘exerts a strong influence on [respiratory sinus arrhythmia, or RSA],’ which is low in autism and other conditions marked by anxiety, through cardiorespiratory synchronization”. The rhythms of stimming, of art, of repetition literally calms Autistic hearts.

Savarese also writes about the sensory engagement and embodiment of Autistic readers, quoting poet Tito Mukdhapadyay with whom Savarese read Moby Dick, “The habit of making marks, the habit of looking at these marks, the habit of fondly rediscovering them, and the habit of looking at them even more when my visual surroundings become complicated and drown my eyes—habit provides a modicum of comfort”. Tito writes about using writing as more than a form of communication: as a touchstone for keeping himself grounded in a chaotic world.

Closing the loop

Exploring Elinor Rowlands’ article and these four books has been incredibly validating for my writing style. They highlight how stimming, repetition, and nature metaphors are not just quirks but meaningful expressions of my autistic experience. These works challenge both the ableist prescriptions for speech and the normative editing practices that seek to erase these elements from writing. This collected body of research and writing advocates for a greater appreciation of diverse forms of art and expression. As an autistic writer, it’s empowering to see my intuitive and sensory-driven style reflected and celebrated in these texts. May more listeners and readers, more therapists and teachers, more editors and publishers come to value the unique voices of autistic speakers, typers, and writers, fostering greater inclusivity and diversity in art and its reflection, life.


Brown, Julie. Writers on the Spectrum: How Autism and Asperger Syndrome Have Influenced Literary Writing. Jessica Kingsley Publishers, 2010.

Rodas, Julia Miele. Autistic Disturbances: Theorizing Autism Poetics from the DSM to Robinson Crusoe. University of Michigan Press, 2018.

Rowlands, Elinor. “Beauty in the Gothic: Forms of Autistic Aesthetics.” Ought: The Journal of Autistic Culture, vol. 5, no. 2, 2024, pp. 39-44.

Savarese, Ralph James. See It Feelingly: Classic Novels, Autistic Readers, and the Schooling of a No-Good English Professor. Duke University Press, 2018.

Yergeau, M. Remi. Authoring Autism: On Rhetoric and Neurological Queerness. Duke University Press, 2018.

Yes, I Am an A.S.S.

Decorative photograph of two people are silhouetted on a jungle gym made of platforms and rope nets against a bright sun, with lens flare and bokeh effects dotting the image.
It is good when Autistic people work with and for other Autistic people.

I spent some time today updating the Facebook page for this blog and my related work under the Unstrange Mind umbrella. I had not updated it since my first book came out in 2013. I’ve had two more books published since then. It was time for a small makeover.

It’s no secret that I use AI productivity tools. I do all my own writing, but AI helps me outline and brainstorm, among other tasks. I’m a solo owner-operator of two businesses — Unstrange Mind and Mercury Muse — and there’s no way I could run two businesses alone without supportive AI tools.

I wanted to update the tiny bio Facebook allows me on the Unstrange Mind page there. Words are at a premium. I had “Maxfield Sparrow is an Autistic scholar activist, community facilitator, and” (I later had to edit this part down a few characters to get it all to fit.) I turned to one of my AI assistants and we had a brainstorming session about how to describe the rest of my autism work.

Scholar activist covers most of the autism writing I currently do (although I have been working on a novel with four Autistic primary character, but it’s still a while before that’s going to be ready to see daylight). Writing, in general, is a way I serve the community from a distance. Writing is close, intimate communication that happens when I’m not even present.

Community facilitator refers to the work I’ve been doing for the last four years, serving as peer support group facilitator for various groups of Autistic people. This is more direct work in which I serve small groups of people directly.

The other work I do is rooted in my training as a DSP – a direct support professional. But that is a medical term from a medical industry and I feel less comfortable with that career title all the time. I’ve also been trained as a disability employment specialist, and I’m planning to go through training to become an autism life coach. Everything in this category is work I do one-on-one, directly with people. There is no job title I’m aware of that covers this much territory.

Until now. My AI and I fine-tuned our thoughts and words together and ended up with “Autism Support Specialist.” I really like that. The phrase describes what I do – specialized support, one-on-one, with fellow Autistic people.

But what I really love is the acronym. Being Maxfield Sparrow, A.S.S. is a great way to clown on the pretentiousness that can too often go along with having a string of letters after one’s name. I’m not some fancy professional, I’m just some ASS who’s helping other people get more of what they want from their life. Remembering the silliness of that acronym might help me remain humble and open, listening to my clients, remembering that I have been trained to help them, but they are the experts in their life and they already know what they want to do. My work is to help them make that happen.

Should You Write a Memoir?

The Atlantic published an article today, titled “Why You Maybe Shouldn’t Write a Memoir”. The author, a Harvard professor who writes about how to be happier, uses scientific research about self-referential SPEECH to try to dissuade people from WRITING about their lives. This is really sloppy work, Prof!

A person, viewed from the shoulders down, is wearing red plaid sneakers, a dark shirt and shorts. They are sitting cross legged on the grass at sunset and writing with a pen in a journal.

He writes that people’s lives are boring and not worth reading about. He says that telling our story will make us less happy. He strongly insinuates that people get addicted to talking about themselves and it could be a sign of a mental illness.

What if writing and publishing articles that tell people their lives are boring and mis-use science to “prove” that writing about their life is bad for them…what if *that* is a sign of a mental illness? (I’m not interested in flinging diagnoses around, but seriously…what is healthy about discouraging people from creative pursuits?)

If you want to write about your life, write about your life! Don’t even worry about whether you will publish it or not: the act of writing about your life can INCREASE your happiness and self-understanding.

This goes doubly for every neurodivergent person reading my words. Write your Autiebiography. Write your ADHD memoir. Write your Tourette’s tales. The world is just beginning to realize how much it does not understand neurodivergent people and the more of us who write about what it is like to live in our neurotypes, the more people will be able to offer us the levels of understanding we need and deserve.

So, I’m going to comb through this article and talk about some of what is very wrong about it.


The author’s first piece of evidence that it would be bad for you to write a memoir is that your life is boring. My counter: says who? Good writing can make anything interesting. And you are never required to try to publish your memoir anyway.

Who are you writing your memoir for? If it’s for yourself or your family, it will not be boring because the only people reading it will be people who care about you. They will want to know how you feel and what you have experienced because they want to know you.

If you’re writing a memoir for the world, to help them understand something about your life or lives in general, you can hire developmental editors and polishing editors and book doctors to make sure your story gets the telling it deserves. You can join writing groups and swap stories with other sensitive writers and help each other workshop your writing.

There is no reason to assume your memoir will be boring! If someone (like this Atlantic author) tries to convince you that your life is too boring to write about, just say something like, “thank you for your input” and then cheerfully ignore what they said. Their opinion of your life is what is boring to me. I would rather read 50 pages about what you like to eat for breakfast than read another article that tells people their lives are too boring to make good stories from.

So he segues from telling you how boring your life is, to saying maybe while you’re at it, shut up. The entire rest of the article is about TALKING about yourself. What a bait-and-switch that is: the title of the article lies. It’s not at all about writing a memoir! But the author frames his article about not TALKING too much about yourself as an argument for why you should not WRITE about yourself and that is just flat-out wrong.

So I’m not going to engage with his study of people telling their stories on social media. I’m not going to engage with his descriptions of what parts of the brain are activated when you talk about yourself. If you actually worry that you talk too much about yourself and would like to curb that habit, his article is probably fine.

But do not let his article dissuade you from WRITING about your life because that is a healthy and good activity that will enhance your self-understanding and, yes, your happiness. Instead of continuing to focus on the bad Atlantic article, let me tell you a little bit about why you *should* write your memoir, if you’re feeling like that’s something you’re interested in doing (or are already doing. Or have already done!)


Dr. Diana Raab, author of Writing for Bliss: A Seven-Step Plan for Telling Your Story and Transforming Your Life, writes in her Psychology Today blog: “Writing our memoirs can help us reclaim our voice after it’s been taken away or silenced by difficult circumstances or traumas.”

While autobiographical writing is not the same as therapy, it can open our eyes to new perspectives within ourselves. Writing the stories of our lives can help us find threads of meaning in what seems like swirls of chaos.


Dr. James Pennebaker, a psychology professor at the University of Texas at Austin, has extensively researched “the power of expressive writing in helping people cope with upheavals” (quoted from his Amazon bio page). Pennebaker says: “Months after people had written about traumas, over 70 percent reported that writing helped them understand both the event and themselves better.” (From pages 139 and 140 of Pennebaker’s 2016 book, “Opening Up by Writing it Down: How Expressive Writing Improves Health and Eases Emotional Pain”)

Pennebaker writes that one potential cause implicated in the development of PTSD is the inability to “translate traumatic experiences into language” (145). Pennebaker cites the research of Jonathan Schooler into language and memory, writing, “when we convert an image in our minds into words, it fundamentally alters the way the image is stored.” (145)

According to Pennebaker, writing about our traumatic experiences helps to dissolve them in a way, loosening their grip on us. I have experienced this effect in both writing and speaking: when I put words to my suffering, my suffering is less.


While I’m not digging into the research presented in the Atlantic article, I feel like the author cherry-picked the studies he put forth. Many more studies say that writing AND talking about your life can help you heal and become happier. Not only do many professionals encourage autobiographical writing, there are several professional organizations dedicated to promoting healing through writing.

The Center for Journal Therapy (CJT) promotes the use of journaling as a tool for healing and personal growth. They offer training and certification programs for professionals and resources and support for those who journal. CJT emphasizes the power of the written word to help people process their emotions, explore their experiences, and develop greater self-awareness.

The National Association for Poetry Therapy (NAPT) encourages autobiographical writing through the art of poetry, applied in a therapeutic setting. NAPT also offers training and certification programs for professionals and resources and support for people who want to use poetry as a tool for personal growth and healing.

Additionally, the National Association of Memoir Writers (NAMW) emphasizes the healing power of memoir writing on their website. If you’d like to dig into their resources, I recommend starting with this free e-book, Memoir Writing as a Healing Journey.


My bottom line, with respect to the Atlantic article: don’t let the author’s negatively stop your writing. It doesn’t matter whether you publish or not, keep writing. It is good for you to write about your life: past, present, and future. If you’re not sure where to start, pick up a workbook, attend a workshop, hire a professional, look for free programs (your local library branch is a great place to start looking.) Lighthouse Writers in Denver, Colorado has an ongoing writing workshop called Hard Times that has some meetings online. It might be a good fit for you.

But whether you seek help in writing, look for a group of people to write with, or take the page on alone, don’t stop writing. It does you good! And if you choose to seek publication, your words could help so many people feel less strange, less alone. And never mind that Atlantic article, because there is far more research pointing to the opportunities for autobiographical writing to make you happier.

Mirror Pronouns

An image of a person inside a mirror, reaching out to shake hands with a person standing in a field with trees. They are clearly different people but both share a similar gender presentation.

Among the questions I get asked most often: what are your pronouns?

I’m usually asked by people who want to quote me in something they’re writing or want to know how to introduce me for a webinar or presentation I’m part of.

I have layers of pronouns, including a set of “professional pronouns” I use when doing public work Iike writing or presenting. At the core, my pronouns are mirror pronouns.

What are mirror pronouns and why do I use them?

I came up with the term “mirror pronouns” in 2018, when I was rehearsing for roles in the upcoming production of Eve Ensler’s Vagina Monologues at Naropa University. I had been on testosterone for a year and a half by that point and had reached a stage in my body’s changes where strangers routinely called me “he” and “sir” about 90% of the time.

Three of us had met at someone’s house to rehearse the choreography for a sketch we were doing together (the cute little one about what your vagina would wear and say). My fellow actors were referring to me as “she” and “her” during our rehearsal and I couldn’t help noticing the warm feelings I had around that. I found those feelings confusing, because I really don’t like it when cis men call me “she” but I felt so included, so seen, so loved when this cis woman and this non-binary person who used “she/they” were both calling me “she.”

After much soul searching and journaling, I realized my gender is relational. I had been shying away from the term “genderfluid” without understanding why. It’s because I *am* genderfluid, but that word alone didn’t feel like my word. When my companions used their gendered pronoun to refer to me I felt seen and had a sense of belonging.

I don’t have a gender. I also don’t identify as “agender” because, like “genderfluid” it doesn’t feel like a word that really communicates who I am. When I am alone, I don’t experience myself as having a gender. I’m not even sure what gender is…until I discovered that my gender is relational, I wasn’t sure anyone had a gender. It was just something I had to trust because other people communicated gendered experiences.

Gender is constructed and mine gets constructed in relationship. My core gender drive is belonging and when I am with someone and feel accepted by them, I experience my gender as being the same as their gender. If they use a different pronoun to refer to me, they construct another layer of my gender. For example, I have a dear friend who is a butch woman. When I am with her, I experience myself as having the same blend of masculine and feminine energy that she puts out. She enjoys my masculine presentation and refers to me as “he”. That adds an overlay, kind of like a theatrical gel sheet that changes the color of a spotlight or footlight. I am still that light that is her gender and I am also shifted to a masculine hue by her loving use of “he” pronouns. When I am not interacting with her, that light turns off and the gel filters nothing because I don’t have my own gender.

I also have professional pronouns, which are “plural they”. I am not a multiple system, yet my professional “they/them” is plural because, as a writer and speaker, I am reflecting the genders of my audience. My audience is “plural they” and so am I when I am entertaining, educating, validating, etc. a group of other people.

Crowds are overwhelming for me when I am not separated by the role of serving them or by an actual physical divider like a stage or podium. When I am serving a group — as a speaker, as a facilitator, etc. — the distance makes a sort of bubble that keeps me calm and grounded. But when I am in the middle of a crowd, like when I’m shopping, for example, it is overwhelming to my senses and psyche.

Some of my overwhelm in crowds is caused by having some of my senses intensified by my autistic neurology: so many smells, so much motion, people moving around unpredictably. I have Central Auditory Processing Disorder (CAPD) so all the words being spoken are just a blur to me. I don’t have “cocktail party ear” so in crowds I am simultaneously overwhelmed by too much sound and Hard of Hearing because I can only understand written or signed language with a few snatches of words anytime I’m able to lipread (which is spotty and inconsistent for me but I have learned that I do rely heavily on lip reading to understand people in noisy environments.)

I am also overwhelmed by crowds because I have prosopagnosia (face blindness). I become anxious because I feel like I don’t know anyone, I don’t know if there is someone there I *do* know but do not recognize. What if someone I don’t want to talk to is there and sees me and I end up in a conversation with them before I realize who they are? (This happens to me a lot) What if someone who has stalked or threatened me is there and I can’t see them? (This has happened to me before.) Will someone become angry with me if I don’t greet them properly? And if I’m there with someone, I cling to them ridiculously, for fear that they will slip from my line of sight for half a second and I won’t be able to find them again.

But once I realized how relational my gender is, I started paying attention to my gender feelings in crowds and realized how much “noise” there is for me there, too. Sometimes I joke that I have to use the family/accessible toilet because I am disabled by having “too much gender”. But that joke is based on my reality of actually experiencing too much gender when I’m embedded in a crowd. As a metagender Autist, I’ve found my dysphoria can often be drowned out by everything from autistic super-senses to trauma responses, all of which shout more loudly than dysphoria, confusing me. But crowds are dysphoric for me because the relational gender pull is coming from so many people in so many directions at once it throws me into shutdown.

So there’s a little bit of my history with relational gender and mirror pronouns. Life has been a long journey of discovery for me, with new insights unfolding all the time. I’ve noticed that Autistic people tend to keep developing for the entire trajectory of our lifespan, compared to neurotypical people who tend to be pretty settled in to their identity by age 25 and generally don’t shift very much after that age (although, of course, there are striking exceptions. Speaking of groups in the aggregate will always leave out the outliers. I try to avoid speaking about groups of people for that reason: I root for the underdog and back the outlier every time.)

I cherish that lifelong capacity for growth in myself and those around me. All of which is to say that it was a long path to get here and I can’t predict where I will be in another 10 or 20 years, if I’m still alive. All of this hard-won self-knowledge could shift again. I may be destined to spend my whole life in “figuring it out mode.”

And that’s a great thing.

What I tell people when I introduce my pronouns while facilitating peer support groups for Autistic Trans/Non-binary/GNC folks: I accept all pronouns offered in love, or at least without malice. I don’t have any pronouns, so feel free to use whichever feel right to you. I feel especially seen if you use mirror pronouns, which is using your pronouns to refer to me, but I know pronouns can be hard for some people, so don’t worry. Use the pronouns that come first to your mind when you type or speak about me and they will be the right ones. Unless you’re coming at me with hate, you literally can’t get it wrong.

Taking the PDA Questionnaire – Part One (of Five)

I’ve been taking a deep dive into PDA recently. I’ve known about it for a very long time, maybe 15 years, but have mostly ignored it because the name is so ugly and the things written about it by professionals have not resonated for me at all.

But since I’ve been listening to people who identify as having a PDA profile, I’m seeing more and more things I relate to. I took a PDA questionnaire written by people with PDA and I scored in the range that says I probably have PDA….but so many of the things I said “yes” to are descriptions of my trauma responses or descriptions of what it’s like for me to have both autism and ADHD.

Feeling even more confused about what PDA actually is or is not, I decided to make this series of posts where I respond to each question on the questionnaire in more detail. If you want to answer the questionnaire for yourself before reading my responses, you can find it here: PDA Test for Adults

Before I go into the questions, I want to emphasize that I am not saying PDA doesn’t exist. I’m also not saying it does exist. The traits people describe are real and people have (or should have) the right to self-identify autonomously. The label PDA seems to be helping many people understand themselves and that is something I always support.

I am not sure the PDA label is right for me, though, both because as I took the questionnaire the first time I kept feeling that the traits being described were due, in my case, to other causes. And also, I don’t want to take on a label that is so pathologizing the first word in it is “pathological”. But I wanted to be clear that it is not my intention to erase others as I explore these traits in myself.

There are 50 questions, so forgive me for my short answers. I am responding to the questionnaire in a series of five posts so I don’t have to respond to all 50 in one sitting.

Post Index (to be filled as I go:

  • First ten questions (this post) (2 Yes, 7 No, 1 what is this question asking me?. The yes answers were due to: one I don’t know and one that is part because of long covid and part because of dysgraphia)
  • Questions 11-20
  • Questions 21-30
  • Questions 31-40
  • Question 41-50
  • Running total of yes answers so far: 2
  • Do you find it difficult to do the simple things that other people seem to find easy? (My answer: what does this question mean?)

Right off the bat, the questionnaire hits me with the kind of question I have a hard time answering. This is too vague. Do you mean tying your shoes? Figuring out if a word is a noun or an adjective? Figuring out how I’m supposed to respond to the question “how are you?” from a stranger?

This is a yes from me if I think about things like:
– working a 40 hour work week
– ignoring bullies and continuing to go where they are (including work and school)
– being on time anywhere, ever (I am time blind and have to set several phone alarms (“two hours until X” “one hour until X” “30 minutes until X” “15 minutes until X” “X” – with “X” being specific so I know what the alarm is for) or I will just accidentally blow everything off, including stuff I really wanted to do.

  • Do you dislike praise? (My answer: NOPE)

Absolutely not. Sometimes I feel a little bit awkward, because I have imposter syndrome. But I adore praise and I keep the best of it in a little file to cheer myself up when I’m feeling blue. Earned praise feels wonderful.

  • Do you find it harder to do tasks that you have to do as opposed to optional tasks? (My answer: NOPE)

It’s the opposite for me. I find it hard to squeeze in the things I want to do because I have such a heavy sense of responsibility about things I have promised to do. So I prioritize work for others and feel driven to show up for respite sessions or group facilitation. My own work, like working on the novel I’m writing, working on my art skills, studying Esperanto, take a back seat. Even eating and bathing have to wait in line for the times that haven’t been promised to work.

  • Do you find it more difficult to complete tasks when people are watching? (My answer: NOPE)

I feel like I remember having this more as a kid than now. When I think about something like writing in public so people can watch how I write, what I edit in or edit out, and generally observe my process, I don’t feel any discomfort or stress. Maybe it’s because I’m a ham. But the same with drawing while someone watches. A YouTube person said they don’t like when people watch them put on their make-up. That never bothered me when I wore makeup (I pretty much always put it on with someone watching or at least seeing me, because I’d go to the bar and put makeup on in the dressing room before work.)

  • Do you feel a need to take charge but dislike being placed in charge? (My answer: NOPE)

I only feel a need to take charge when things are chaotic and confused and no one else is actually in charge. The only thing I dislike about being placed in charge is if it’s done without asking me first and getting my consent. But if someone says, “Max, we want you to be in charge of X. Will you do that for us?” 9 times out of 10 I will say yes. I know that I’m an acceptable leader. I’m good at delegating according to people’s strengths (and asking them if they accept the task). I’m good at directing my energy toward making the thing happen and stepping out of the way instead of trying to center everything around me as some leaders try to do. I don’t particularly have any stress around leadership (with consent).

It was about this time I was starting to think this PDA concept was not a good fit. It was so far outside my own life experience, I was shocked when questions suddenly started hitting.

  • Do you dislike being rushed? (My answer: oh HELL yes)

This one hits one thousand percent. I have had horrible meltdowns in the middle of someone trying to rush me into or through something. Being rushed feels miserable to me. I remember once I took off my watch to wash dishes at church and forgot it by the sink. I got home and mentioned it and suddenly everyone around me was shoving me out the door to go back and get it while I protested that the building would be locked up by now (it was). And then they wanted me to just go into our hang out time like that, still wearing my church clothes, feeling the adrenaline of being rushed. I yelled at everyone and sent them away to hang out without me because they weren’t listening to me and were saying my church clothes were just fine (I didn’t care about fashion. I just wanted to get out of my nice clothes before I ruined them by playing in them!!) and I wasn’t getting a chance to explain myself or even just sit down and take a breath. And the ritual of changing out of my good clothes and hanging them up and putting on casual clothes was an important part of transitioning to a different activity and I felt squished and pushed and ignored and talked over and mostly just super rushed by other people to do the things they wanted me to do.

So, yeah. This question stresses me out just answering it. Is this PDA? I don’t know. It doesn’t seem that pathological to me to want to change my clothes and sit down for a minute before being rushed right back out the door and then rushed into an activity I was not prepared for because I was forced to leave the house without the opportunity to get a day bag of stuff I would want to have with me while I was stuck in someone else’s car. That’s another thing I hate: I’m very picky about whose car I get in any more because when I am not the person driving I have zero control over where we go and what we do and I end up getting stuck someplace with no way to get back home. I have hitchhiked home because I was stuck and didn’t want to be there and no one else cared.

This doesn’t feel like a pathological avoidance of demands to me. This feels like me not wanting to be forced to be super uncomfortable for no good reason. I will be uncomfortable if it helps someone else. But I hate being forced to be uncomfortable because what I need is being perceived as an unnecessary burden that is interrupting their party time. Does that make *ME* the pathological one??

  • Do you feel unsure of how you will react in a situation, despite past experience? (My answer: no)

I don’t think so. I often tell people I don’t know how I will respond, but that is only with respect to situations I haven’t been in before so I really don’t know how I would respond. I tend to feel pretty solid in my knowledge of myself and my understanding of how I will approach a situation I’ve been in before. Every once in a while I do surprise myself, but I generally feel like I know myself well and know what to expect. When the way I will react is different from past experiences, it is because I have thought about that situation and planned what I would prefer to do and then I go into that situation again, waiting to see if I fallback to old patterns or find the courage to try to new reaction. That’s about as “unsure” as it gets for me.

  • Do you feel like others are always wrong, even though you know logically that isn’t true? (My answer: nope)

Nope. Others are not always wrong. On most topics, others are mostly right. When I logically believe someone is wrong, I also feel that they are wrong. When I logically know people are not wrong, I don’t feel like they are wrong: not then and especially not always. I can’t remember ever feeling this way.

  • Do you dislike imposed routine? (My answer: only if I actually don’t like the thing being imposed on me, so no.)

I’m going to assume that “imposed” means someone else is forcing it on me? I hate when things I don’t want are done to me without asking me first to get my consent. For example, I went to a school that made my class schedule for me. I complained because they took me out of Spanish class and put me in French class for whatever reason. But I had been studying Spanish in school for at least five years by that point and I did not want to stop studying Spanish! I complained and asked, moving my way up the power hierarchy, until I found someone willing to switch me back to Spanish.

I didn’t get control over any of the other classes chosen for me and I didn’t care. I only get upset about routine being forced on me when it’s something I don’t like. I didn’t care one way or the other about the other classes. They were all okay enough. I only got upset and dug my heels in when they made a choice for me that I distinctly didn’t want. I actually thrive with routine, so if I’m not getting enough structure imposed on me from outside myself, I start creating routines myself, in order to ground me in space time.

The only routines I don’t like imposed on me fit under other categories: Routines that are too tightly planned and make me rush from one thing to the next. Routines that are built around more than I have to give: like the 40 hour work week that will grind me into nothing very fast. Routines built around things that take a lot more from me than they give back yet I was never asked if I would accept that responsibility.

  • Do you/have you ever struggled in work/school due to the amount of work required of you? (My answer: yes)

Absolutely yes, but not (that I’m aware of) because of PDA. I do not have enough physical bodily energy to work a 40 hour week ever since getting COVID on February 15, 2020. I literally, physically do not have the energy. I can actually *do* 40 hours worth of work in many areas (writing, for example), but I cannot work for 40 hours out of the 168 hours in a week. I just get a lot of work done in shorter bursts of time, and it evens out somewhere along the line.

As for school, again the answer is yes but not because of PDA. I have dysgraphia and any situation where I was required to write a lot by hand was impossible. I got shouted at in the Navy over not being able to do ten pages of handwriting a day. I got in trouble with every teacher ever because I barely did any homework or schoolwork because I wasn’t allowed to type (and we didn’t start using computers until I was 15 and even then, only in computer class and I still wasn’t allowed to type my homework because “handwriting is an important skill you will need for your entire life!”)

So there are the first ten questions. Future posts will address the rest of the questions. I may do a sixth wrap-up post summarizing what I’ve learned from this series. I also would be happy to add a list of useful resources in the sixth post if people feel like sharing them with me as I go through this experiment/experience.

Thank you and stay tuned!

I apologize for the spammers

My web host is as secure as a block of swiss cheese. I’m in the process of switching hosting but it is agonizingly time-, energy-, and money-intensive. In the meantime, I comb through my posts for the spam links and delete them. I change my password regularly. And I apologize to you.

For the record: I do not accept advertising on this site. I do not embed advertising on this site. If you see a spam link woven into one of my blog posts, I promise you I did not put it there and I will be removing it as soon as possible.

Predators are taking advantage of me and my blog. Please do not click the links that are obvious advertising and, for the love of all that’s important in this world, please do not buy something from one of those links (the redbubble t-shirt links are mine. Feel free to buy a sticker or t-shirt if you like them.)

Thank you.

Speaking to Sui*dal Autistics

This is a transcript of a YouTube video I published six years ago.

Watch this video on YouTube here

 Hello. This is my last video from where I’m at here in Maine because next week I start heading south again. It’s gorgeous here. I’m sure you can see what a beautiful day it is. Today I came out in the bright sunshine to talk about a dark topic suicide. I am a survivor of multiple suicide attempts, and before you worry, I’m fine right now, but I wanted to share that because I read an article this week by m Kelter of Invisible Strings.

I will have the link to that down below. And in that article, he mentions that two-thirds of autistic adults are suicidal. I’m just pausing for that to sink in two-thirds, and today I want to talk to that two-thirds.

The thrust of the article was that you should be very careful what language you use when talking about autism. Because we’re listening, we’re reading. I wanna be vulnerable today because a lot of people have told me they read my writing and they feel … they … they view me as so strong and powerful and proud.

And yes, I am all of those things, but I’m also very vulnerable and weak, and I struggle with depression and anxiety, and I want you to know you’re not alone. You’re not alone. It’s really, really hard to be an autistic person in this world. It’s hard to be anyone in this world today, but there are days when I am convinced that the world hates me and everyone like me, and it doesn’t take much convincing when there are people out there talking about stamping out autism and early detection.

So, you know, what does early detection mean? It means let’s, let’s detect the autistic people before they’re even born. Let’s make a world without … I’ve actually seen organizations in their mission statement say that they are fighting for a world without autism, and that’s horrific to me because a world without autism is a world without me.

There’s another article that I’m also gonna post down there in the comment box below this video. You’re not alone. It can get better. It does get better. Don’t leave us. We need you. We need you. How can we have a full understanding of autism without your voice? We need you. Don’t leave us.

So number one, you don’t over-commit.

Now, that’s a huge thing. You say, no, that’s hard. You make boundaries. You fight guilt and pressure and internalized shame. It’s okay to have boundaries. It’s good to have boundaries. Don’t feel guilty for saying no.

People will try to tell you, you should be doing more than you’re doing. ‘You’re not living up to your potential. You’re not doing enough.’ You’ll tell yourself that. You’ll think I only got one thing done. I got nothing done today. Nothing done today. I’m worthless. Believe me. I have those days. I have a lot of those days. The thing is, you’ve got to remind yourself that you’re working with a different processor, you’re working with a different neurology.

Number two, don’t be afraid to ask for help.

This is easier said than done. I have a really hard time if I ask for help. You know, I’m really in dire straits because I just don’t do that. I learned over the years that it was pointless. I wasn’t gonna get help anyway. I was just gonna get blamed for my problems. I was gonna get told to try harder. So I just gave up. Don’t give up. Learn how to ask for help.

Find someone you trust and ask them to help you learn how to ask for help. Just know you don’t have to do it alone. Whatever it is, life. You don’t have to do life. You are not alone. We’re here, ask for help.

Number three, find happiness within.

Don’t go chasing happiness thinking it’s just around the corner, just over that hill in that person, in that job. Find it inside yourself. And a really great tip the article gave was to make a happiness list. I think this is a marvelous idea. I’ve done it myself.

When you’re feeling good, write down everything that makes you happy. It doesn’t matter whether it’s something big like travel. Or something small like smelling a puppy’s tummy, which makes me really happy cuz they’re so fuzzy and they just smell so puppy.

You know? I mean, if it’s running your fingers through the water coming out of the faucet, put that on your list. That makes you happy. Put everything on your list that makes you happy. Star Trek is on my list. Let me tell you a few episodes and I might not be happy yet, but I’ve pulled out of the funk I was in because Star Trek really makes me happy a lot.

Music. A really great thing to do is make a playlist that starts with music that matches the mood you’re in and it goes through shades of mood and ends with music that makes you feel really happy.

Like, I know it’s cheesy, but R.E.M.’s “Shiny Happy People”, you know, it’s just the right beat. I’ll get up and dance. I’m really happy, but I can’t go straight into it. I have to work my way there: if I’m not feeling it, that song just pisses me off.

Don’t compare yourself to others. This is number four. Don’t compare yourself to others.

And, yeah, because especially don’t compare yourself to people who aren’t autistic because they’re not autistic. They’re not, I mean, they’re like you because we’re all human beings, but they’re not like, you don’t even compare yourself to other autistic people. You know, if I sit around and compare myself to John Elder Robeson, and Temple Grandin, and Leanne Holiday Wiley. I mean, really, I don’t mean to insult these people, I’m actually praising them. These are really successful people. And Lynn Soraya. really successful people who are autistic. And if I’m feeling bad and I start comparing myself to them, I’m gonna feel like crap.

Because Lynn Soraya writes in Psychology Today, and John Elder Robeson has his own business and Temple Grandin, she gets to hug cows every day for a living. I mean, come on. What a life, you know? And I need to only compare myself to myself. Like right now, I’m sitting on this amazing grass hill with these trees behind me, in Maine.

I’m in Maine. Maine is glorious, and it’s sunny today. It’s gorgeous, and I’m so grateful to be here. You know, when I compare my life to my life, it’s pretty great.

Make another list, an achievement list. I know you have achievements. I don’t care who you are. You have amazing achievements. Look back at yourself five years ago, 10 years ago. Look back at what you were like when you were four or five, and think about yourself. Now you have amazing achievements. You do. I promise you do. And don’t give up on your amazing achievement list until you’ve put amazing achievements on there.

You know, when I’m sitting there with my car broken and no money, and I’m trying to work up the gumption to ask someone for help or do some other kind of problem-solving, it helps to look at my amazing achievement list. Don’t compare yourself to others. Make your own list of amazing achievements.

Number five, don’t second guess your decisions.

You have an inner wisdom. You have an inner truth. You can make the right decisions. You might need to ask for help. You might need a mentor.

Trust that you can make decisions. Don’t let people convince you. That you aren’t competent to make your own decisions and your own choices in life, you may need support achieving what you’ve decided to achieve. But don’t second guess yourself. You have wisdom. Do yourself. Don’t let other people tell you who you are.

That’s that’s your choice, who you are. Don’t let other people tell you what you can and can’t do. You know what you can and can’t do? Don’t you know what you can do? You know what will crush you and what will uplift you. Don’t let other people tell you who you are and what you can do and what you can’t do.

Number six, don’t feel guilty about taking me time. I mean, seriously. Everybody needs time for themselves. Especially autistic people. My goodness, we need time to recharge our batteries. Even really outgoing, really people oriented, autistic people need time to recharge our batteries. You have to put your own oxygen mask on first.

You have to take care of your own needs first. You have to don’t feel guilty or ashamed or let other people pressure you not to take the time you need. To rest, to restore yourself, to get your wits back about you, to, to recollect your spoons and your energy. And you need that. Don’t let people take away your me time.

Um, if you have kids, it’s really hard to get me time. But carve some out. Find somebody who will watch your kids. Somebody you can trust to watch your kids while you have some time away. Everybody needs me Time. You need to have time for yourself, time to do your own thing, time to do nothing. I take time to just stare at the wall or a tree or the sky or whatever.

I take time to do absolutely nothing, and that’s, that’s very important. And everybody needs that. Everybody needs that.

Number seven, don’t beat yourself up when you make a mistake. And now this one is really important because a lot of times when I get really depressed it’s because I feel like I did something completely stupid and sometimes it was completely stupid. I’ll be honest with you, sometimes I really screw up. I just really screw up and then I beat myself up over it.

I just, I dwell on it. I. Can’t let it go. I chew on it. I chew on it and chew on it, and I need to, I’m processing it. My brain needs, I don’t process things as fast as other people. Sometimes things that people process in a minute or less, it takes me days or weeks or years. So don’t let people tell you that you obsess over things too much because y sometimes you just need to chew on things, but don’t let you get yourself in a funk.

By beating yourself up over something you did or said. You can’t take it back. You can’t undo it. But what you can do is frame how you chew on it. And I have these things I say to myself, I, I like when I’m really feeling bad and I’m saying, God, I’m so stupid, I start right there because I’ve learned that I can’t, you know, those, those, those, um, what do they call them?

Those statements of affirmation when I’m really feeling down a statement of affirmation, you know, I’m good enough, I’m smart enough, and gosh darn it, people like me. That’s just bullshit. Excuse my language. But when I am depressed, when I’m suicidally depressed, I can’t pull myself out of it by talking about how great I am because I don’t believe it.

So I start with where I am. I start with, God, that was stupid. That was stupid. Oh, I can’t believe I was so stupid. And from that I move into, I was stupid Sometimes everybody’s stupid, but I’m still a good person and, and every time I feel those bad feelings come up as I chew on what I did, I say, yeah, I’m stupid, but it’s okay.

I was still a good person. Yeah, I’m stupid, but I’m gonna get past this. It’s gonna be okay. Everything’s gonna be okay. It’s okay that I’m stupid. Everybody does that sometimes and, and see, that’s manageable. That’s a bite. You know, I’ve, I’ve bitten past that really deep self-loathing and I’ve entered a, a, a, a lighter period of self-loathing.

And from that, I, I moved to, Um, for, I moved from, I’m stupid to, I said something really stupid, but I’m not gonna do that again. Okay. Maybe I will do it again because I’m stupid. Nope. I’m not stupid. I’m not stupid. I made a mistake. Everybody makes mistakes. It’s gonna be okay. I made a mistake. Now I’m in this lighter level of self-loathing where I’m almost now of self-loathing.

Now it’s it. I’m not stupid anymore. I made a mistake. I made a mistake. It’s gonna be okay, and it may take me hours to get to this point, but it, it’s about framing. I. What you’re chewing on and, and taking bites that you can swallow. You know, if I start out with, oh, it’s okay cuz I’m a great person, is this, I can’t swallow that.

I need a bite. And I need to chew through it. And so I made a mistake, but I learned I can learn. I learned from my mistakes. I’m learning from my mistakes. God, this sucks. It sucks to learn from my mistakes. I wish I didn’t make mistakes. Everybody makes mistakes. It’s gonna be okay. I’m a good person. Good people make mistakes.

I’m learning from my mistake because I’m a good person. If I weren’t a good person, this wouldn’t upset me so much. I’m upset because I care. I’m a caring person. I care about whether I hurt other people. I care about what other people think about me. I’m a good person because I care about people liking me, being good to people, and having people be good to me.

I’m human. It’s okay to be human. Humans make mistakes. Humans say things that are wrong.

People can forgive me. I can forgive myself. I forgive myself for being human. It’s good to be human. It’s real. To be human. Being human gives me compassion for other people. Having compassion for other people is how I help others.

When I make mistakes, I learn and I can help other people. I can understand other people, I can forgive them and empathize with them, and that’s what I’m trying to do today. You’re human. You make mistakes. You’re different. People won’t always understand you. It’s a cruel world. People say and do harsh things.

It can be hard even just to keep yourself fed. It can be hard to find a space in life where people aren’t taking advantage of you. It’s hard. I know. I live it too. I’m there with you. You’re not alone. We can be human together. It’s a good thing. I love you.

Love yourself.

If you enjoyed this, I don’t know why. I’m cutting that. If you enjoyed this video, click the subscribe button below. Follow me. I try to make videos every week. Try to be here for you. Open, vulnerable, sharing my life as I travel, and make mistakes and be human. Have a great day because you’re a great person.

But What About the Good ABA Therapists?

ABA Bear

Image description: A hand-drawn bear of many textures is riding a tricycle. Above him are the letters ABA and below the letters, it says Abolish Bear Abuse. Below the bear, it says A bear will do ridiculously unnatural things for a handful of gummy humans … but that does not give you the right to make him do it. Available on t-shirts, stickers, tote bags, and more. Copyright Maxfield Sparrow

This week I ended up in yet another conversation with someone who wanted to defend ABA. He repeatedly asked us not to demonize ABA and kept dismissing discussions of the origins of ABA by saying that Lovaas is a long time ago and we can’t compare ABA to where it came from. Along the way, he used a racist analogy that I won’t repeat here.

He kept insisting that there are abusive ABA practitioners and good ABA practitioners so we shouldn’t vilify the entire body of ABA based on those bad apples. After several rounds of that, I wrote this and decided to polish it and share it here in my blog as well. Thanks for reading!

My problem is bigger than ABA. I have a strong issue with the entire field of behaviorism from which it springs. (I know, I know. You have some analogy about how I shouldn’t judge roses unfairly because they grew from manure. Now we can skip past all these analogies. You’ve been heard there.)

Before behaviorism, psychology was concerned with mind. Psyche. It’s hard to translate from the Greek, but you usually get soul, mind, or spirit. The whole field of psychology was concerned with interiority.

Along came Skinner with his boxes and his pigeons and his scientific revolution. You can’t question a pigeon about her interior existence or enact the talking cure on her. All you can observe is her behavior. And so behaviorism was born, by studying animals and later transferring the methodology to humans.

Skinner didn’t originally want behaviorism to be applied to humans. Read Steve Silberman’s excellent history in the book Neurotribes for more details about Skinner’s concern and eventual yielding to those who wanted the theories of behaviorism to enter the field of human psychology.

This is why so much ABA looks like animal training: that’s where it came from. Watch anyone training a bear to do tricks and you will recognize the methods. (Any readers who have been traumatized by therapies should not watch videos of bear training. It gave me nightmares for weeks.)

ABA has a fundamental flaw because Behaviorism has a fundamental flaw. It’s a psychology cul-de-sac that people cling on to because they don’t know how to access the interiority of those who do not speak so they don’t know how to do any psychology other than animal training when faced with non-speaking clients.

And since Behaviorism rapidly became the gold standard for addressing autism, the toxic viewpoint and theories blanket nearly all autism projects, programs, theories, therapies, and classes. Most insurance will only pay for something named ABA, so everyone jumps into that name because it’s the only game in town. And the organizations certifying people as officially qualified to perform ABA are perpetuating everything that’s wrong with Behaviorism while veiling it in soothing words – often, ironically, Behaviorists use wording lifted from the Neurodiversity Movement but stripped of their intended meaning and context. It’s insidious and it’s awful.

And some good people slip through. Some people give lip service to behaviorism, knowing in their heart it’s the wrong approach, get their certification, and then get out into the world and practice with genuine compassion and help people.

And a lot of those people don’t have the resources to set up their own practice, so they go to work for someone else and are forced to do things they feel very wrong about if they want to keep that job. Those who don’t have the resources to quit and go work someplace else end up with PTSD over time because of what they are economically forced to perpetrate. I feel for them. I’ve met some after they quit and recovered somewhat. It’s a very real trauma they’ve experienced – the trauma of causing trauma in others. It’s a hard thing to deal with.

I never did make that flaw in Behaviorism clear, did I? That flaw is the Black Box. Behaviorism is external. Behavior. What you observe.

You say ABA cares about internal things? Motives? Preferences? Aversions?

True, but it’s designed to be able to glean all that from observing behavior, not from social-emotional bonding between client and professional.

You can talk all day long about practitioners who do care about their clients, who do bond with them socially and emotionally, who do care about interiority, etc. You and I both know that they exist. I have met some BCBAs that I really liked, who were genuinely good people.

But … in order to present ABA as something beneficial for ALL Autistics, it has to be something that can be done with non-speaking Autistics and show documentable results.

That’s the number one argument I hear from those who support ABA: “it works. It’s documented.”

I’m not denying that. ABA works for all the same reasons that bear training works. My argument against Behaviorism is that I don’t want my people viewed as or treated like animals. We are human beings. It harms us to be viewed as or treated like animals and that is what Behaviorism encourages from its practitioners.

Behaviorism, at its core, only cares about the exterior reality of a person. And until professionals start learning how to access interiority with non-speaking Autistics (it can be done. I know parents who do it every day with their non-speaking children) Behaviorism and ABA will always be the order of the day because ABA is easy and documentable and no therapist ever has to return 15 to 20 years later to clean up the mess when the trauma they started finally comes to full fruit.

Every oppressive system has many, many good people in it. People get caught into systems in so many different ways. I will never deny that there are good people out there practicing ABA. But there are far more people out there damaging children because they are working from within a system that, by design, damages people. In the end, the good ABA therapists don’t matter. I mean, they matter as human beings and I feel for the struggles they will face if we manage to get rid of ABA and they have to re-certify in something else.

But it doesn’t matter that there are good people doing good work in ABA. The system is so flawed and so damaging those few good apples aren’t worth taking on the whole rotten barrel.

The “With Autism” Series

A friend showed me an article today: Study: Drivers With Autism Just As Good As Other Motorists. My friend joked that they needed a bumper sticker that said “Autism is my co-pilot” since they were clearly driving with autism (as opposed to driving while Autistic.)

autism is my copilot

[image description: a square white sticker that says autism is my co-pilot.  Available on Redbubble by clicking the image or clicking these words.]

A 2018 study found that “Drivers With Autism Just As Good As Other Motorists”. A friend pointed out that if you’re driving with autism, autism is your co-pilot. Now, most Autistics I know don’t drive, but if you’re one that does drive celebrate by putting this sticker on your vehicle, letting the world know that, hey! you’ve got this driving thing down. After all, you’re with autism!

After getting their permission to “steal” that brilliant idea, more ideas kept coming. There are so many ways to be with autism, after all.

You’ll need someplace to store and carry that autism you’re with:

Autistic people can go about our lives without a care, but the moment someone insists we are really a “person with autism” we have to figure out where to put our autism so we don’t accidentally leave it behind at home. Enter the autism bag. A clear label warns others to stay away from your autism while sturdy straps allow you to carry your autism along everywhere you go. The stylish accessory every person (with autism) needs.

Caution Autism

[image description: a teal drawstring bag that says Caution! this bag is filled with autism. Available on Redbubble by clicking the image or clicking these words.]

caution autism

[image description: a purple tote bag that says Caution! this bag is filled with autism. Available on Redbubble by clicking the image or clicking these words.]

But I hadn’t quite captured the full zeitgeist of person-first language. There needed to be a t-shirt that acknowledged the autism accompanying a person. And here it is:

I'm with autism

[image description: a red t-shirt that says I’m with autism and has a hand pointing to the left. Available on Redbubble by clicking the image or clicking these words.]

Are you an Autistic who keeps getting called a person with autism? (Is being with autism like being with child?) Tell the world that you are here with autism. Autism is evidently right next to you. “What, you can’t see it? How can that be possible? I am clearly a person. With autism.”

In case it’s not clear, all these designs are satire, meant to snark a little bit at person-first language with its assumption that autism can be sifted out of a person and set off to the side as something incidental that “just happens” to exist but “doesn’t define” the person who is carrying it around like a pet or an accessory.

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