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Think about it. What do most humans want from a new home?
Big welcoming entrance.
Living room.
Dining room.
Family room.
Home theater.
Bathrooms.
Closets…
All to entertain & impress guests. For everything else… they invented tool sheds… and storage units.
Honestly…? Autistic-as-fuck-dot-me has different priorities. Which is why you won’t find much discussion of autistic living in Better Homes & Gardens…
Johnny Profane Âû – Blogger. Podcaster. Pretend Rock Star. #ActuallyAutistic. On Twitter at @johnnyprofane1. An earlier version of this article appeared on [AutisticAF.me](https://autisticaf.me/2022/05/12/designing-my-home-around-adult-autism-pt-1-making-it-work-for-me/). Also as a [podcast](https://autisticaf.me/2022/05/12/designing-my-home-around-adult-autism-pt-1-making-it-work-for-me/) & [captioned video](https://www.youtube.com/watch?v=tHug5TjTvNY).
If you’re autistic, love one, work with some… can’t figure out if you are one…
Or live with the challenges of any other disability..
You really, really need to think about where you live…
Because finally learning to create a place of safety, peace, and passionate work… Did more than keep me out of psych wards.
It kept me alive. No joke.
Here’s how I cripped my home. To work for my needs…
Your needs…? Your solutions…? Will be different. But here’s some ideas… to get ya started.
Nothing captures human life like a story. So let’s start there…
“DAMN it.” My big toe smarts…
More wail than shout, “WHO… left the scales in the middle of the bathroom floor?!”
“They’re not in the middle of the floor,” my wife says quietly behind me…
So I jump. Hitting the bastards again.
“If you need your slippers, they’re next to your bed, hon…” Patient. She’s always… patient.
“AARGH!!!”
I love my wife, I love my wife, I do, I do, I do… I love my wife…
This…
This is one reason I live alone. And design my home around my autism.
As an autist, I’m challenged…
managing space,
time,
mind,
heart,
body, and above all…
energy.
I give a LOTTA details, so here’s the short TL;DR, too-long-didn’t-read:
I’ve learned to improve those challenges by
creating routines,
organizing space,
grouping objects in containers,
memorizing “cognitive maps,”
designing for efficiency…
and asking for support from loved ones.
See, there are a few things you should know right off.
My ability to function varies wildly.
Meltdowns,
Shutdowns,
Depressions,
Decompensations… when I lose skills for weeks… or months…
For bonus points? Ya got yer executive processing problems with decisions & prioritizing. ADHD & mild dyslexia/hyperlexia problems with any list longer than 3 items…
That’s why it’s hard for me to stick with… any… “system.” Even ones that help me a lot. So, as I explain below, my wife gives me weekly support. Or everything falls apart.
Also, sometimes I’m tuned into my surroundings. Sometimes I’m lost on Cloud 9.
For instance, like some autists, I wake up slow. As in, it can take hours for me to stop bumping into stuff. OR… have any freaking clue what’s going on around me…
Pros seem to make up an ugly medical term for every quirk of mine. This one… “confusional arousal” or “sleep drunkenness.” My personal fave… Like many autists I have awareness difficulties. Waking, dreaming, sleeping…
Then there are attention deficits… and balance problems. You can see why…
I have trouble negotiating 3D space.
So getting back to my opening story…
I head to the kitchen to make coffee… which can speed up clearing my head.
Down the long, narrow corridor… trailing my left fingers against the wall. To keep my balance.
Through the living room… Briefly touching my keyboard, a chair, and my work table.
Into the kitchen itself… Touching the table, grabbing the oven handle.
Here I’m using “cruising” as a survival strategy… as some autists do. Maintaining my balance… and frankly, my attention as well. By making sure every room has solid surfaces that I can touch as I go through. (I’m likely an undiagnosed “dyspraxic.” I’m definitely an adult “clumsy kid.”)
I click a burner on high. Turn to my coffee nook beside it. Grab my pour-over pot, a filter…
Then reach right into the door of the fridge. My Bustelo espresso and half-and-half await me.
Step two steps to the right, flick the water filter switch, fill the teapot.
Step two steps to the left and plop the pot down. Then stare off into space…. waiting for the water to just hiss…
I create routines whenever I can.
They save mental energy. Like they say, saving more “spoons” for important stuff. (Now’s a good time for the classic essay on disability, “The Spoon Theory,” if you haven’t read it already.)
Simple frustrations can stop me from achieving even simple goals…
So I arrange my entire home in “Nooks.” Places where I can find all the tools, resources, space, and furniture I need for each project.
No confusion. No lost time searching. No re-arranging furniture.
One single-purpose nook for each interest…
In my 10×12 kitchen, nooks for
– coffee,
– baking and pickling,
– pub table for eating & work projects.
In my 12 x 12 “living room”…
– band room for playing & writing music,
– doggie den,
– two-seater “home theater.”
My 8×10 “office”…
– illustrating,
– writing,
– vlogging set,
– tool bench.
My 10×12 bedroom…
– bed,
– yoga studio,
– dressing area.
All in less than 700 square trailer feet.
Outdoors, I have nooks for firepit, container gardening, tools, recycling, a compost pile. Oh, and a maze for the grandkids. I mowed a small hayfield in circles. Added ornamental grasses, flowers…
Decisions are hard for me… demanding colossal energy.
Took me a lifetime to realize it. I actually ran a magazine, an ad agency, and coupla nonprofits. With a LOT of staff support. And reducing everything to routine, flowcharts, 3-item lists.
At one time, I prided myself on my “quick” decision-making. Truth is, I did everything I could to avoid decisions. My “quick” decisions were mostly impulsive. They may have reduced my executive-function anxiety… But frequently, with poor results.
In retired life, without support staff, this is becoming more clear to me.
I walk to the front door… Call Buddy, take him out on the porch, put him on his cable. Head back in.
I love living things. Pets. Plants. Yeast. I surround myself with them. 3 cats. A Pit-Chihuahua dog. Vines & plants in every room. An entire fermentation nook for my living food.
Because I can’t predict shutdowns or decompensations, I automate the care of my loved ones. When I can.
I try to walk my dog every day… but make sure he has long cables from my two exit doors. That way I can let him out… when I can’t go outside my door.
I automate watering my plants. For when I forget them for a few days.
Yeast and fermented pickles?
Yeast and fermented pickles… Well… sometimes the lower life forms get tossed. I set up routines for demanding living things. But some days I can’t process any list, schedule, or phone alarm.
So I can’t count the number of times I’ve restarted my damn sourdough starter….
I sip my coffee… and pretend to glance at the colored index cards on my corkboard…
The good news? I have found… after decades of trial and error… the best organizational system for me.
The bad news? Not that bad, really.
I need a little help to make it work.
No system helps me all THAT much… without modest outside support…
A loved one or caseworker…
“Letting me do it myself”… when I can.
Helping me focus and overcome inertia… when I need it.
Lending me energy to restart the process… after I completely lose it for a while. Again.
Works like a champ for me with a little care & concern.
I tried paper planners. Personal digital assistants (PDAs). Elaborate todo computer apps. Getting Things Done™… trademark, all that good stuff… Electronic calendars…
Turns out…
If I can’t see it… I forget it. Soon… it doesn’t exist for me.
And…
If I can’t touch it… I don’t really understand it. Soon… it doesn’t exist for me.
Food pantry items stored behind doors? I almost immediately forget they’re there. End up buying them over and over.
I mean, I’ve got more cans of canned milk… Why do they can milk, anyway…? For when I forget to buy half & half….
Notes, calendars, alarms stored on my phone or computer desktop? I forget them immediately. And then ignore them even faster when they do go off…
Cuz there’s always something more important to do.
My best system: Low-tech, colored index cards. On a corkboard. With big wooden pins.
I can see them.
I don’t have to read them to know what they’re about. Color tells me everything.
I love moving them around and organizing them.
I remember them.
Touching them, physically writing on them… vastly improves the chances I’ll use them.
Unfortunately…
I can’t process any list longer than 3 items. I’ve said it 3 times now.
So… nix to long, written to-do lists. Spreadsheets. Detailed calendars. Etc, etc, etc…
I can create them okay. It’s not that kind of cognitive impairment. I understand them well. I’ve always created usable lists and forms for employees, for instance.
But using them? My eyes glaze over.
And it’s true for index cards too. I can handle up to 3 cards okay. I can even handle up to 3 sub-cards per category… with effort & discipline.
Any corkboard more complex than that? Just so much colorful space junk… wasted on me.
I sit down at my writing desk.
I flip on my desk lamp. My computer already open to the newsfeeds on autism that I post… most days… to my Facebook groups.
My notes, phone, paper, pencils, pens, writing tools… everything I need, organized in one place. Only one question remains…
Do I have enough energy & clarity left…
To BEGIN my day…? To get ANYTHING done that I really want to do…?
Because that’s the question I must answer every day. No matter how I plan it. No matter how I organize my home.
It’s the question facing every autist I have ever known. Every morning.
The struggle for energy and clarity is behind EVERYTHING I’ve described so far about my home.
Every detail is a distraction.
Every distraction saps my energy.
Every decision takes time and energy.
Every rug or dog toy is a risk of stumbling. Every step around… or, worse, step over… any obstacle saps me.
And every nagging thought, “I don’t have time to move it right now… I got stuff to do… I gotta remember to do it later…”
Every undone task… gnaws at the back of my mind. Say, walking on an unswept floor all day… “cuz I just gotta get other stuff done…” drives me bonkers.
Every missing tool. Every tiniest obstacle.
And because of all the above? Every missed goal I brood over… in guilt.
Each and every one of these sets off incessant, automatic backward mental processes…
trying to remember,
trying to decide,
trying to review,
trying to prioritize,
trying NOT to self-loathe,
trying trying trying… instead of doing.
This leads to exhaustion. And collapse. Zero spoons…
Here are 7 surivival principles…
And some bonus tips… I’ve used for myself. Tbh, I haven’t been able to use these strategies in every living situation… all the time.
But I always keep them in mind. And I try to work toward them.
1. Every detail in my home should support my autistic life…
limited social interaction,
intense passions & interests,
a need for structure and routine,
sensory processing differences,
executive functioning differences…
and physical or cognitive disabilities.
My lighting can be neither too bright… nor too dark. Bright lights… especially blue, fluorescent or LED… overstimulate me. Dark surroundings can cause depression.
It took me years to discover the perfect solution. Avoid overhead lights altogether. Instead, create bright “pools” of light with lamps in functional areas. Reading lamps, spotlight on the baking counter, low-wattage bulbs on end tables…
The QUIETER, the better. I didn’t discover this till I moved to rural Indiana. Traffic, sirens, street yelling, parades, mega-bass car radios… were exhausting me. I had no idea.
Now I turn off every fan I can. Noisy lights. Turn the refrigerator up so the fan kicks on less. I put up heavy drapes and block unnecessary windows against traffic and neighbors. When I hang quilts or colorful blankets on my walls… such a pleasant, cozy hush.
I also converted a small 8 x 8 “bedroom” into a blacked-out, noise-insulated yoga room. Doubles as a safe space for when I must isolate.
I thrive with lots of fresh air and outdoor activity. When I can, I use air purifiers & filters. This may be due to allergies… or my chronic respiratory problems. Either way, it helps with my focus a great deal.
Less is more.
More time. More energy. More awareness for what’s important to me. I have as few objects as I can in my home. Now, it’s not exactly a Zen desert… but I do tend toward the minimalist in my art AND life.
If an object doesn’t have a use, embody a memory, or radiate enough beauty to make me feel something… Do I really need it?
2. Simple frustrations can stop me from achieving even simple goals…
If I meet the same obstacle a second time… I stop and fix it. Now. Before I “forget” yet again…
3. Decisions are hard for me.
I try to decide once, and move on. If I don’t move toward the results I want in a reasonable time… then I consider a mid-course correction. Or the next idea.
4. My awareness of my surroundings varies.
My mood varies. And I dissociate… space out or trance out… a great deal. Think “absent-minded professor.”
Both can dim my awareness of what’s going on around me. And I get bored easily. So I’m frequently lost in my head. I bump into things a lot. My house has to assume an autopilot role to help me.
I tend to rely on “cognitive maps” to get around.
I put furniture and floor items in logical places… and then never move them…. At least not without planning and thought. That way, I can get from point A to point B, without thinking. Like stepping around the bathroom scales…
Finding the right “home” for a tool or utensil is key. I imagine, where does an object want to live? Where does it feel it wants to belong? Like pets…
Where’s the first place that pops in my mind when I picture using the object?
Fingernail clippers, for instance. In a hurry, I might use them anywhere in the trailer. Playing guitar, sitting chatting at the table… But after, they always go home to a specific corner in my bathroom drawer. Because that’s the first place I groom after a shower.
I avoid rugs.
I invariably trip on them because I forget they’re there…
Or when I’m not aware enough to lift my feet.
I trip on wall-to-wall carpet too.
My favorite to walk on are hardwood floors… Tile or linoleum, vinyl… work too.
BUT I also avoid HARD bare floors. When I dissociate, I can forget I’m holding a glass of water… until it spills or smashes. Wooden floors are somewhat forgiving. I have lived on tile over concrete… not a good choice.
5. I have trouble negotiating 3D space.
I constantly bump into things… with the bruises to prove it. And it takes a lot of attentional energy to avoid injury.
I put foam rubber on the corners of counters, washing machines, shelves… Anything I bump into.
I try to make sure all hallways are clear of ALL obstacles. Including pictures on the wall… If they stick out much. A Twitter friend removes doorknobs they bump into.
I try to keep ALL doorways clear, at least 2 to 3 feet… No nearby furniture, baskets, shoes, piles of odds & ends.
The concept of flow is central to my life.
I never made a religion of Feng Shui… but I use a few principles religiously. I try to design each room as if water were flowing through it… Where would it flow freely? Where would it be forced to slow down? Where would it get trapped?
Because in my foggy mental state, I tend to wander like water… path of least resistance.
I must be very careful of open doors, cupboards, drawers. I walk into them or bonk my head over and over. When I can, I remove them. This also helps me organize as I talk about in my next point.
6. If I can’t see it… I forget it. Soon… it doesn’t exist for me.
Things in drawers, piled in layers.
Things behind doors.
Things in cupboards.
Things under beds.
All become invisible to me.
I’ve exquisitely organized drawers thousands of times in my life. Only to forget what’s in them… within moments.
I use open shelves or chifforobe for my clothes instead of a dresser. Socks & underwear especially. Drawers become a random mess that won’t close.
I use open shelves for the pantry. I set it up so I can turn, choose, grab, and go from my chopping block.
I use a transparent over-the-door shoe organizer for nearly all my tools. Toolboxes & totes drive me crazy. My home repairs went up 1,000% when I could actually FIND any tool I needed at a glance.
7. If I can’t touch it… I don’t really understand it. Soon… it doesn’t exist for me.
Using my hands helps me remember, think, understand. This includes writing… If I write it, I remember it.
Sometimes… if I just handle the tools in one of my nooks… baking or writing… it can give me the desire to do. So I leave as many tools out to touch as I can. They lend me motivation… when I stroke them.
I organize my workspace around ease of reach. If I use a measuring cup daily… I make sure it’s within an easy arm’s length in my cooking nook. Same for my hammer on my workbench.
If I use a tool several times a WEEK, it must be within a few steps. If I use it once in a while, I make sure it’s in plain sight within the room.
But less than MONTHLY…? Do I really need it?
I obsessively containerize… in transparent containers like jars. Objects with similar uses belong together. In my mind… and in my living space. I’d rather grab one jar of screwdrivers, than decide which ones I might need. Easier putting them away too.
I use baskets, trays, jars, pails… whatever I have handy to group similar objects.
Without containerizing my life? Too much fussy detail. Too many chances for frustration. Or loss.
I hope you got some ideas. Some you might want to try out. Some may inspire you to find your own solution…
An earlier version of this article appeared on AutisticAF.me. Also as a podcast & captioned video.
Resource articles for further reading:
“Major indoor triggers include irritants such as paints, cleaning agents, pesticides, and perfumes (both personal from toiletries and from deodorizers) as well as building materials such as sealants, plastics, adhesives, and insulation materials.”
- Dyspraxia & Adults, Dyspraxia Foundation USA
Discussion of clumsiness and apraxia.
Discussion of insulation from sensory input from in the environment. Dividing areas into certain activities. Indirect lighting. Easy navigation. Quiet rooms & safe spaces.
“Inside the home, predictability can be a big deal to some on the spectrum. Each room should have an obvious purpose, transitions between rooms should be smooth and their boundaries should be clear. This may help an autistic person establish routines and increase independence, while minimizing anxiety.”
Discussion of using your environment for cues to make changes.
more“I’ve started to wonder if I’m autistic,” I told my husband. By “started to wonder,” I meant that I’d been doing extensive research for weeks. I’d taken multiple adult autism self-assessments and read first-person accounts of women diagnosed with autism later in life. I really meant that I’d already figured some things out. But as usual, I didn’t tell him about my suspicions until I’d already had the chance to process what I had learned.
“I’ve started to wonder if I’m autistic”
To tell my husband that I now believed I was autistic felt risky. Not because I risked him thinking less of me or even leaving me, but because I risked him replying, “I know.” Up to that point, all of my social experiences—including romantic relationships—had been predicated on hyper-anxious self-monitoring. Am I saying the right thing? Did I do something weird? What’s my script for this scenario? If my husband replied, “I know,” I would have to reckon with failing in my vigilant self-monitoring.
My husband, noting my anxiety, did not say, “I know.” Instead, he asked, “What makes you think that?” The floodgates opened, and the rumination, research, and existential exhaustion poured out of me. When I finished, he did tell me that it was a possibility he had been considering for years. That hurt, but at least I’d gotten to explain myself before he revealed that.
Journey to Autism
So why did I start down the autism path? I remember learning about Asperger’s Syndrome as a teenager in the late 1990s. The descriptions of Asperger’s felt familiar, but they always centered on boys and men. Further, Asperger’s was often deployed as an insult or a cause for pity. It wasn’t until twenty years later that I first noticed a peer, a middle-aged woman I knew through entrepreneurship circles, mention that she was autistic. I searched for information on autism spectrum disorder (now inclusive of Asperger’s Syndrome) for the first time as an adult. I even took a quick self-assessment.
The information I uncovered, as well as the result of the assessment, was unnerving. Yet, the possibility that I might be autistic was so identity-shaking that I couldn’t yet consider it. A couple of years later, I was listening to an interview with an author, Katherine May, whose book, Wintering, I’d just finished. During the interview, she mentioned that she was autistic and shared some of her experiences with the condition. My ears perked up like a radio tower receiving some far-off signal. “Maybe…” I wondered. The following week, I heard another interview with another author, Patricia Lockwood, mention that she was autistic. At that point, I needed to get serious.
Autism for adult women
I started searching for information about autism in adult women. I took every adult autism self-assessment. I ordered Katherine May’s memoir, at that time only published in the UK but now available in the US, The Electricity Of Every Living Thing. I devoured it—marking up the pages with orange sticky flags and furiously underlining every section that put words to things I’d felt my whole life. Reflecting on this now, just over a year later, it strikes me that I was living in an absurd kind of dualism. I both believed that everyone must be working as hard as I was to cope with the world and that I was broken and painfully different. I didn’t have words for my own pain because I’d come to believe that, surely, mine was a ubiquitous experience—not worth describing in detail.
In The Electricity of Every Living Thing, Katherine describes preparing for the same conversation I’d recently had with my husband. The response she’d prefer from her own husband is “surprised acceptance, preferably with a very short space of time between those two sentiments.” What she fears, though, is that her questioning will only be an escalation of the “exhausting, attention-guzzling instability that has come to define” her. When she eventually has the opportunity to talk with him, she finds it difficult to even bring up the topic: “What do you say, anyway? Oh, by the way, I’m autistic. It just doesn’t seem possible, after twenty years together.” She finally lets him know what she’s been thinking about, and his response is careful but unsurprised. She writes, echoing my own deep fear, “This is the worst thing of all, because he knows; he knew all along; he knew before I did.”
The Autism Journey
Recent research into the growing number of people who have received autism diagnoses later in life describes six interwoven stages of the autism journey. Three stages are personal, and three stages are clinical. The first pair of stages, Feeling Different on the personal side and Missed Opportunities on the clinical side, accurately describes this part of the journey for me and, based on her memoir, for May. As I said earlier, I have felt different—broken, awkward, unlikeable—all my life. And while not a clinician, my conversation with my husband represents just one of many missed opportunities for others to help me recognize a critical part of my experience of the world.
From: Exploring the experience of seeking an autism diagnosis as an adult (Autism In Adulthood, 2021) https://www.liebertpub.com/doi/10.1089/aut.2021.0028
Feeling Different and Missed Opportunities
When my husband and I had the conversation, we’d been together for over eight years. He’d suspected that I was autistic for at least six of those years. I don’t blame him for not bringing it up; I’d have reacted badly. But it was a missed opportunity, nonetheless. As a child, I was singled out for being different. I was extremely intelligent and quickly annoyed by my peers. But, having been socialized as a girl, my “acting out” didn’t appear the way one expected autism to present. Instead, my difficulties (social rather than intellectual) in school were funneled into the more socially acceptable bucket of “needs to be challenged.” I had an IEP (individualized education program) because I was “gifted” rather than possessing a developmental disorder. Later, in a last-ditch intervention, I skipped sixth grade. My teachers, mom, and the administration hoped that jumping ahead a year would be a sufficient challenge and ease my social problems. This, it turns out, is a common experience. When interventions are made, it’s often in response to a trait or situation that seems a more likely “culprit” than autism. For me, it was an intervention on behalf of my intelligence. For others, it’s an intervention for anxiety, obsessive-compulsive disorder, ADHD, or borderline personality disorder. And still others’ only intervention is more time in the library away from the constant sensory overload of their peers.
For adults just now recognizing their autism, it can be frustrating to identify those missed opportunities—it was for me. But many of us have become expert maskers and copers. We know how to pass as “normal” even when it’s emotionally and mentally exhausting. And we learn ways to cope with being in a world that demands a social approach to just about every facet of life. That is until we can’t do it anymore. Researchers in New Zealand suggest that some autistic people go unrecognized until “demands on communication, flexibility, and social interaction increase and surpass the individuals’ abilities.” That’s how it was for me. My own ambitions created a scenario in which I could no longer cope. Constant masking made me physically ill.
I continued to experience the same social challenges, despite high performance in high school, college, and my early career. It was frustrating to feel capable of accomplishing great things while lacking the social aptitude to realize them. On the precipice of achievement, I always seemed thwarted by an inability to pick up the phone, ask for a favor, or secure the right partner. In retrospect, I can trace a pattern of 5-year cycles. I’d build toward a goal or accomplishment for four years and crash and burn in the fifth year. Elementary school, high school, college, early career, and first marriage were all bookended by boundless energy and enthusiasm on one side and depression on the other.
Considering Autism and Varied Diagnostic Experiences
And it was toward the nadir of the last 5-year cycle that I entered into the autism journey’s second pair of stages: Considering Autism and Varied Diagnostic Experiences. I’ve already shared how I began to consider autism as the scaffolding I could rebuild the narrative of my life around. So I’ll now share the details of my own diagnostic experience—which I’ve received numerous requests to do over the last year.
One of the first things I learned about autism is that there is no universally accepted clinical assessment for adults. In fact, there are very few psychologists willing to do an adult autism assessment in the US. The CDC website only addresses diagnosis in adulthood with a single question in their FAQ. Clinical autism assessments are primarily conducted for young children through the observational accounts of caregivers and teachers. A clinician uses those accounts to determine whether the child meets the diagnostic criteria for autism spectrum disorder in the DSM-V. But this approach proves tricky—if not futile—for adults.
Adults who have not yet received a diagnosis have typically learned to mask (or camouflage) their autistic traits to appear “normal.” Hence, accounts from friends, coworkers, or family members aren’t likely to be helpful. Further, the lack of an accepted adult assessment tool means clinicians don’t have a straightforward way to take a first-person account. For example, a few months ago, my primary care physician wanted to screen me for bipolar depression. She pulled up a list of screening questions on her computer and ran me through them. She quickly determined that, while I might exhibit some degree of mania at times, I’m not likely bipolar. Not a thorough diagnosis (or lack thereof), of course. But helpful. She had no such tool when I sat down with her to talk about autism.
Assessment, diagnosis, and self-diagnosis
Some providers are willing to do an autism assessment for an adult—but they are few and far between. There are two clinics in the nearest big city to me, Philadelphia. One is at the University of Pennsylvania. Another is a private practice that charges $1500 out-of-pocket for the assessment. I don’t begrudge them the fee; it seems a fair price to me for the amount of time it must take them and the unique skills it requires. But the cost is objectively out of reach for a considerable portion of the population—especially autistic adults who are disproportionately more likely to be underemployed or unemployed. Neither my doctor nor my therapist had any luck finding someone to evaluate me closer to home, let alone one that would accept insurance.
For this reason, self-diagnosis is widely accepted both by the autism community and professionals, including healthcare providers and researchers. That’s the route I decided to take. Because I’m self-employed, I don’t need to justify accommodations for work. And both my primary care physician and therapist were happy to accept the rundown of my experience versus the diagnostic criteria. The University of Washington Autism Center offers a guide to determining whether or not pursuing a formal autism evaluation is right for you, plus a listing of excellent resources for learning more. To reach my own self-diagnosis, I followed what’s become a pretty standard journey for many middle-aged autistic women and non-binary people.
Before I lay out that journey, it’s important to note that “diagnosis” is holdover language from defining autism pathologically. The autistic community today broadly recognizes autism not as a disorder but as a trait. (As more people push back against pathologizing autism, researchers are starting to refer to it as autism spectrum condition (ASC) rather than ASD.) I can be no more diagnosed as autistic than I can be diagnosed as 5’5″ or brown-haired. This stance builds on the social model of disability, which positions disability as a function of social construction or the built environment rather than impairment or a medical problem to be fixed. Some autistic people are intellectually impaired, and many have medical conditions that are present alongside autism (including anxiety disorders and depression). But treating autism as a disorder rather than a neurological variant in communication, processing, and socializing only adds to the stigma that autistic people face.
As I started to consider autism to explain my experiences, my first active step was research. I researched autism spectrum disorder as it is currently understood in general and specifically among women with no intellectual impairment. Then, I took each available autism self-assessment online, including the Autism Spectrum Quotient and the Autism Spectrum Screening Questionnaire.
I also picked up the book I Think I Might Be Autistic by Cynthia Kim. I have to hand it to Cynthia for the direct and search engine-friendly title! Like Katherine and me, Cynthia came to her autism revelation in mid-life. And also like Katherine and me, Cynthia started to consider autism after hearing a story on the radio. She then took a quiz and received scores that put her into the “likely autistic” category. Here’s how she described the experience:
“I sat there at my desk for long minutes. Could it be possible that I’ve been autistic all my life and not known it? That was a stunning realization—one that would require me to reframe everything I thought I knew about myself and everything I’d assumed I knew about autism.”
Questioning assumptions and reframing my world
I’ll come back to questioning assumptions and reframing everything in just a bit. But Cynthia’s acknowledgment that considering autism can be startling is critical. I had to slowly come to terms with the fact that I’d spent 38 years assuming others were processing the outside world in largely the same way when they absolutely were not. Cynthia advises taking as much time as needed at this stage—I certainly needed to. I’d go through waves of thinking that autism explained everything and waves of feeling that I was making stuff up or being a hypochondriac.
Once I’d processed the idea of being autistic on my own, I was finally able to present the idea to my husband. He, as I mentioned, wasn’t really surprised. I asked him to take the online autism assessments with me. I wanted to know for sure that, as Cynthia put it, not “everyone who took the test got a score that said they were likely autistic.” So he completed each test with me—one set of scores for him and then one set where he gave me input on my own scores. In essence, I had him double-check my work. Our results were wildly different. My social, extroverted, in-touch-with-his-feelings husband was definitely not autistic. On the other hand, my scores went up when I factored in his observations and input. I’d been too conservative the first few times around.
Doctors and therapists
That was the cue for me to get my doctor involved. She was already closely monitoring me for a recurrence of depression, so presenting the idea of autism felt reasonably accessible. Still, I was a ball of nerves. I wrote down all of the signs and symptoms of autism that I experience—along with some other notes I wanted to share with her. Luckily, I could type most of it into the in-app appointment scheduler. So I knew she had the information on whether I could reproduce it in speech or not (selective mutism is associated with autism). During the appointment, I pulled out my phone and opened my note. I told her what was going on, the research I’d done, and recited my catalog of signs and symptoms.
I adore my doctor—and I trusted her to tell me if the whole thing seemed overblown. But that’s not what she said. She acknowledged that few resources exist for autistic adults without intellectual impairment and that few clinicians know anything about diagnosing adults. She also told me that a friend’s husband had just received a diagnosis. And she was aware of the growing number of adults identifying as autistic. From that day on, we’ve addressed my mental illness symptoms through the lens of autism.
From there, I sought out a therapist. I’d never done therapy before. Talking about myself, my relationships, and my emotions seemed like a nightmare—not a solution to my problems. But equipped with the language of autism, I felt I could find someone who respected the toll that therapy would take on me—even if it was helping at the same time. The therapist I found helped me walk through several situations that I’d always struggled with: lack of friends, small capacity for social interaction, challenges as a manager, overstimulation, etc. And she gave me quite a gift as we unpacked them. She told me that these experiences weren’t “normal” but that they were okay.
Living as Autistic and Absent Supports
I think I’d been waiting my whole life for someone to tell me that. “No, your experience isn’t normal. And yes, it’s okay.” If I didn’t long for friends, it was okay that I didn’t have them. If I didn’t wish for a greater capacity for socializing, it was okay if I didn’t socialize much. Of course, this didn’t alleviate all of my anxiety around these issues. But it did help me start to rethink my expectations and goals and offer myself some much-needed gentleness. From there, my autism journey entered its final and ongoing two stages: Living as Autistic and Absent Supports.
Sociologist Catherine Tan described processing an autism diagnosis as an opportunity for “biographical illumination.” Unlike other diagnoses that might disrupt one’s expectation of the future or concept of self, an autism diagnosis can enrich a person’s personal history, future, and concept of self. A lifetime of challenges or unusual experiences is suddenly seen in a new light. My new understanding—”No, that’s not normal and, yes, it’s okay”—was precisely that kind of illumination. I was no longer a problem to be fixed, no longer a broken woman, wife, mother, and writer. I wasn’t normal, and that’s okay.
In fact, the paper Tan wrote in which she coined the term biographical illumination is titled in part: “I’m a normal autistic person, not an abnormal neurotypical.” In her analysis of her research, she writes:
“[Autism diagnosis] provided participants an explanation for their atypicality, and concurrently, offered a framework with which to reinterpret and develop their self-concept. Behaviors and challenges of past and present were attributed new meaning and appreciation through the lens of ASD. Accordingly, the moral implications of these behaviors and challenges were re-evaluated.”
Those academic, formal sentences are a balm for my soul. Being autistic isn’t easy in the world we live in. Still, neither is lacking a way to describe the fundamentally different way I experience the world. Autism has given me a better grasp of my identity in its many forms. As both the New Zealand researchers and Tan note in their work, an autism diagnosis also ushered me into the community of autistic people. You can find us on Twitter or Instagram using the #actuallyautistic tag. Countless TikTokers are sharing their experiences, often in hilarious ways. There are online communities, advocacy organizations, and podcasts. There are tons of autistic people doing incredible work to redefine how the world thinks about autism.
Of course, what the world thinks about autism is one of the biggest challenges we face. And that’s why the third pair of stages includes the less-than-happy theme of “absent supports.” By and large, the outside world still views autism as a learning impairment that affects children. Disclosing your identity as an autistic person can lead to comments like, “You don’t look autistic,” or “But you’re high-functioning autistic, right?” Autism is bad, these comments imply: and you’re not bad, so you can’t be that autistic. Friends and family can be dismissive even as they try to be supportive. Clinicians can do the same. Sharing your diagnosis at work might lead to a better work environment. Still, it could just as easily lead to unconscious bias against you.
Compass and Sextant
So while an autism diagnosis can be a liberating, identity-affirming, biographically-illuminating experience, it’s also a minefield for which there is no map. The thing is, I’ve spent my whole life in the minefield. It’s still dangerous—but it’s nothing new. And now, while I might not have a map, I know what to look for to avoid danger most of the time.
Today, my work is better suited to my needs. I have better language to use with friends and family when I don’t have the capacity for socializing. And my relationship with my husband has gotten stronger, too. But I want to be careful to end this without succumbing to some perverse narrative about overcoming my diagnosis. Things have changed. I know myself better now—and that means that I am more likely to honor my natural limitations, alter my goals, and accept my differences. The result might not be a neurotypical picture of success, but I don’t need to achieve that to be satisfied.
Tara McMullin is a writer, podcaster, and producer who explores how to navigate the 21st-century economy with our humanity intact. Her first book, What Works: A Comprehensive Framework To Change The Way We Approach Goal-Setting, will be released in the Fall of 2022. Find out more at https://explorewhatworks.com/.
moreI open this essay for autism acceptance month with this moment as it, and the exhaustion from the weekend, contains a lot of information on what it is like to be autistic. It is easier to convey the experience of being autistic through everyday life rather than a filtered presentation as it affects your life down to the smallest things. Therefore, this essay will narrate my weekend and explain how my autistic “special interests” play a big role in my life, both good and bad.
Clare Tyler is a student at the University of Rhode Island
Sunday – Dizziness
On Sunday, dizziness overcame me as I decided I couldn’t start another assignment. Sleeping in that morning had not been enough. I went upstairs to my bedroom where my cat Amy was napping.
“I didn’t know you’d be in here!” I exclaimed happily as I closed the door and laid down beside her. I felt my head hit the pillow. The dizziness went away as I closed my eyes.
Friday – Hyperfocus
On Friday, I went to the library to pick up a book I needed for my history research project. This research project reveals one of the strengths of being autistic: you usually have one or two “special interests.” Mine is early American history. With special interests, you get invested, or as neurotypicals would say, “obsessed.” You learn as much as you can. Because of this, I invest more than other students. My interest in history is not just about school. Special interests are more than that and are a big part of an autistic person’s life. The bad part about it is sometimes I go overboard. I study/learn until I exhaust myself, and that is what happened Friday. I got home from the library and found that I couldn’t concentrate. The hyperfocus had caused burnout.
Burnout
Disappointed that I couldn’t focus, I did what I usually do at the end of the day from intense studying: I got in bed, put on The Office (I re-watch the same TV shows, another autistic trait!), and scrolled through Twitter. I follow numerous historians on Twitter (another result of my special interest in history), and many posted about being at the academic conference in Boston. I felt my heart sink. I had really wanted to be there, but it was too expensive.
Saturday – Conference and Connection
Another part of being autistic: I connect better with certain types of people than others. I am not good at connecting with my classmates, but professors and academics? I’m not bad.
I find it so hard to connect with most people that missing an event where I could find connections is a big missed opportunity. Indeed, whenever I feel lonely, I just have to accept that that’s the way it is, but missing an opportunity where I don’t have to feel that way for a day? That’s painful.
My mom knocked on my door. She knew something was wrong. I started explaining how I felt isolated but couldn’t go as I couldn’t afford it. She generously offered to pay for it.
Not gonna lie: I was nervous for the conference, and I could only go for one day as we would have family over on Sunday. Still, I was going to make it count. I got everything ready so I could leave early in the morning. I had to catch the commuter rail from Providence to Boston. My dad prepared dinner late that night due to some guests being over.
Routine
Here’s another autistic moment: I have a strict routine. I wake up at the same time. I go to bed at the same time. I workout at the same time. I eat at the same time and don’t change up my diet for breakfast and lunch that much. It makes scheduling the days very easy. Part of eating at the same time is because I have IBS and GERD (conditions common among autistics). Eating at a certain time helps the symptoms, so eating late not only messed with my routine and created anxiety, but it also made lying in bed uncomfortable. I had an IBS flare in the morning, while getting ready for the train. I hoped that the flare wouldn’t mess with the train ride or when I was at the conference. The adrenaline wasn’t helping either.
Adrenaline
Adrenaline with IBS is a double edged sword. I’ll give an example from last semester: after a meeting with a professor about a paper, I was so stressed that I got a really bad IBS flare. Bad enough for the pain to keep me awake at night. The fatigue from it lasted until some adrenaline kicked in during one of his lectures, and the adrenaline stopped the fatigue from the flare. While too much adrenaline can cause a flare, the right amount of adrenaline can stop flares, so while on the train, I tried to calm down a little bit to get the right amount of adrenaline. It worked.
I walked into the hotel feeling ok physically, my hands still shaking with some adrenaline. The environment didn’t help my anxiety. I hadn’t seen a hotel so big or glamorous, and there were a lot of people. After registering, I went to the exhibit hall and started to feel like myself: a place surrounded by books is home to me, probably an autistic thing to say. I got myself a copy of Necropolis by Kathryn Olivarius for a shockingly good price as well as a copy of A Disability History of the United States and strolled around until it was time for the first talk I would be attending.
The talk was quite interesting. One of the panelists said he was a disability scholar, so I went up to him after the talk. We discussed disability, exchanged ideas on disability research, and he gave me his contact info. This was the reason I like academic conferences: the connections make up for all of the anxiety.
Laughter
During the second talk I attended, a member of the audience asked the panelists a question. They clearly weren’t sure how to answer, and I chuckled at the looks on their faces. I didn’t mean to laugh. It just came out. I think this might be an autistic thing as well: difficulty controlling expressions or other non-verbal communication. For example, last semester, I, without meaning to, reacted to something said about Alexander Hamilton during a lecture. Things just slip out sometimes. It wasn’t a big deal in class, and it wasn’t a big deal at the conference as only the person sitting next to me noticed.
I left the conference having enjoyed myself but feeling immensely exhausted and headache-y. My head throbbed throughout the ride home and didn’t go away until I had some Tylenol. I slept in the next morning (something I rarely do as I have a certain wake up time in my routine).
Sunday – No Spoons
While able to do a half hour of work with some coffee Sunday morning, that was all I could manage. That was when I laid down because of the dizziness. I was not able to work at all Sunday. Saturday’s conference, while worthwhile, had drained me of my energy (or spoons as some say). Was it socializing? Was it listening to the talks? Probably both, but this exhaustion is very typical for an autistic person after a social event, and burnout after exhausting yourself studying a special interest can be common too. The IBS flare I had when off my meal schedule? Also common, but autism is not all bad.
On good days, my special interest gives me happiness. It distracts from social isolation, and as you can see, it can create social connections. So while it has its downsides, it also has its upsides, just like every other autistic trait. Now, whether I will be able to get my work done on time this week is a question, especially since we have family over, calling my recovery time into question. But I don’t regret this weekend. I really needed that conference as sometimes special interests are the key to happiness for an autistic person.
Another thing to take away is that routine is extremely important. Sticking to my routine keeps my anxiety and other aspects of my health, like my IBS, in check. I don’t think that sticking to a routine or having a special interest should be pathologized. I have been complimented on my focus and organization and have been tempted to say, “Thanks, it’s the autism.” My special interest is why I’m so successful in school, and my routine helps me be productive, organized and keep healthy. While from a neurotypical point of view, some aspects of autism, like hyperfocus and sticking to routines, seem pathologized or excessive, they’re not. They can be keys to success for us.
moreSo, you want to learn more about autism? Here are a few things you need to know.
I am autistic. The world of autism is quite diverse, so my experience is just that, mine. And I am writing this for non-autistic people or, using the language of the autism community “neurotypicals” (NT) – my family, friends, and allies.
Clare Tyler is a student at the University of Rhode Island
As I sat down to edit this piece, I wondered if I had the right list of things. There are likely hundreds of things I would like people to know about autism, but then I thought: who is the audience? Who do I want to talk to in this piece? In trying to answer this, I thought of the neurotypicals (NTs) in my life like my family and my mentor who are looking to be allies but do not know a lot about the autistic experience, and in order to understand the basics, I thought they would need to know a few definitions:
The Basics
What is Autism?
Autism is a developmental disorder characterized by different social communication, including difficulties with nonverbal communication; one or two interests that the autistic person engages with intensely (called “special interests”); stimming (repetitive soothing or stimulating motions); adherence to routines; and sometimes, sensory sensitivities (hyper-sensitivities or hypo-sensitivities).
What is Ableism?
Ableism is discrimination or harmful behavior towards disabled people. Someone who does harm towards disabled people or discriminates against disabled people can be called “ableist.” I include “harmful behavior” as sometimes responses that don’t directly target disabled people can be ableist. For example, the removing of mask mandates is ableist. Though it does not target disabled people explicitly, it harms us disproportionately to our able-bodied counterparts, making it ableist.
First..are two terms that I have come to learn are outdated and are considered ableist by the disability rights movement:
Why are the terms “Special Needs” or “Special Education” a problem?
It implies that our needs are special, but our needs are not special: they’re human needs.
Why are the terms “Asperger’s Syndrome” or “on the spectrum.” a problem?
We usually prefer “has autism” or “autistic.” Which one depends on if the person prefers identity first (“autistic”) or person first (“person with autism”) language. I, and I think most other disabled people, prefer identity first language. If you’re not sure which to use, ask the autistic person!
What is the “spoon theory” of energy?
In 2003, Christine Miserandino came up with the spoon theory to help describe what it was like to have a chronic illness/disability, in her case, lupus. Imagine having only a limited amount of energy units (or spoons) in a day, and you have to take away at least one spoon for each task you complete. It can be more depending on the task. If you are all out of spoons, you have no energy to do anything. If you’re low on spoons, you cannot do that much, and you can start the day low on spoons depending on how much sleep you got, what you did the day before or if you’re in a flare. I bring this up for autism because autistic burnout causes one to be low on spoons for days. For example, I got autistic burnout from last weekend (see my other piece The Role of “Special Interests” in Autism), so I had trouble doing work this week.
What is the neurodiversity movement?
The movement advocates for the acceptance of different neurotypes. Instead of encouraging a society with only neurotypical people (think abled person with no mental health or developmental disabilities), neurodiversity advocates for acceptance of neurodivergent people. A lot of conditions fall under the neurodivergent umbrella, and autism is one of them.
What is “masking” or “camouflaging?”
Given masking with Covid, I should explain. Autistic masking refers to when an autistic/neurodivergent person tries to act like a neurotypical (NT) to fit in. It costs a lot of spoons (energy) and causes a lot of anxiety as we’re hiding our true selves.
What is Applied Behavioral Analysis or ABA?
ABA is a technique of “training” autistic children to act more NT. It discourages natural behaviors such as stimming and rewards children for making eye contact when that can make us extremely uncomfortable. This encourages us to mask instead of being our true selves.
More things to know
Ok, now that we have the basics, here are a few autism specific things that I would like the NTs in my life to know:
We’re not all Rain Man
Some of us, like me, have what neuropsychologists call “splinter skills.” I have very good language based skills. My verbal IQ is really high, but my visual spatial skills are not nearly as good. Plus, math has always been my weakness, and yet I’m autistic. Not all autistic people are math/science geniuses. I’m going to say something controversial: I consider it to be a red flag if an NT “ally” points to Temple Grandin as an autism rights advocate for this reason. When I got diagnosed, I looked to her, and she propagated the view that autistic people “think in pictures.” I don’t, so I wondered whether psychologists got the diagnosis right. I have been through multiple assessments, and guess what? They did. I am autistic. Grandin’s position is harmful in that it paints autistic people with a broad brush, when in fact we are very diverse.
Listen to what we tell you EXACTLY
Listen to what we tell you exactly, because unlike neurotypical communication, we usually mean what we say. There’s nothing to decipher.
Communicate like we do.
Communicate like we do. Don’t rely on/expect us to know nonverbal communication. Say exactly what you mean. Don’t worry about hurting our feelings. Knowing what you think is way better than being confused.
Create an environment where we don’t have to “mask” or “camouflage.”
Create an environment where we can be our true selves. I stopped “masking” around someone after I told them my diagnosis and the energy/spoons it saves is remarkable.
Tell us why.
I always like to know the “why.” For example, at home, I’ve been asked to clean up not just my dishes, but clean other people’s dishes in the sink before dinner as well. I get why I should clean my dishes, but why other people’s dishes? I’m not trying to be difficult, but it seems like an unequal situation. So, a “why” is always helpful. In this case, the reason is my dad makes dinner and I don’t, so I should clean up the dishes to make things easier for him. Plus, now we both have an equal number of tasks. It seems petty to an NT, but not to me. When we ask “why?” we are actually confused, not trying to be difficult or petty. This goes back to there’s nothing to decipher in our communication usually.
Realize the positive aspects of autism.
I got praise for being so focused, and I was tempted to say, “Thanks. It’s the autism.” It’s true. Autism gives me hyperfocus, especially on my special interest. My routine also makes me organized.
Realize how beneficial special interests are.
Encourage them. They can be the key to a person’s happiness. My special interest has given me a lot of what makes me happy: something to focus on and have fun with, and it helps me whenever I feel socially isolated (again, see my piece The Role of “Special Interests” in Autism).
Recognize autistic burnout.
Recognize autistic burnout. Burnout can come from hyperfocus, being in an overwhelming environment or socializing too much, including masking. This happened to me this weekend at the history conference (see the same piece 🙂 ).
Allow us to not engage in social events.
Allow us to not engage in social events. This is especially prevalent at holidays/family gatherings. Social events can cause sensory overload or cause us to run out of spoons, so let us recharge without judgment, even if it seems rude to not attend the event/be with the rest of the family.
Accept our routines.
Accept our routines. I am very strict on bedtimes and eating times. When my dad let me eat earlier than everyone else at what was usually my normal time, my uncle thought I was being rude by eating before everyone else. Well, I have IBS and GERD, so if I eat too close to bedtime, I will have a flare. That happened last weekend. We ate late, and I had a stomach upset the next morning. Routines are there for a reason. Respect them.
Treat us like humans.
Treat us like humans. Yeah, it seems obvious I know, but it doesn’t always happen. If you see us as difficult, tell us. If there’s something about autism that you don’t understand, then ask. This is the difference between the Principal Investigator of a lab I used to work at and my current mentor. He is an NT who is open and willing to learn. That makes a huge difference, because I can tell him how to accommodate me and he’ll do it. This is why I don’t mask/camouflage anymore, whereas in my old lab, I was masking all the time (think of the spoons that costs). I think some NTs are afraid to ask questions on account of being rude. This goes back to my original advice: be direct. It’ll always come back to this. We like direct communication. Don’t worry about hurting our feelings. Knowing is better than not knowing.
Those are my main points, but there’s always more to learn! For NTs wanting to be better allies, I suggest that you follow people on disability Twitter. There are many good advocates on there who I have learned so much from, and listen to neurodivergent people, not other NTs. There is a saying in the disability rights movement: Nothing About Us Without Us. Involve us in decision making, do not have NTs speak for us. Happy Autism Acceptance Month!
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The Neurodiversity Movement is growing as advocates push for acceptance instead of a cure for numerous neurodivergences including, but not limited to, Attention Deficit/Hyperactivity Disorder (ADHD) and Autism Spectrum Disorder (ASD). As a person with ASD and Other Specified ADHD, I too am pushing for a world of acceptance instead of a cure. Because if a “cure” became available to us today, we have no idea who we would be without our neurodivergence. Neurodivergences are there from birth. Therefore, they are a part of who we are. However, neurodiversity advocates have said that there is no pathology in a neurodivergent brain.
For people with just a neurodivergence and no co-occurring health conditions, I would agree, but what about people like me?
Clare Tyler is a student at the University of Rhode Island
Neurodiversity and Pathology
I have PCDH19 related epilepsy, a rare type of genetic epilepsy. It is sometimes categorized as one of the Developmental Epileptic Encephalopathies (DEEs). It comes from a mutation in a PCDH19 gene and manifests itself in a wide spectrum of phenotypes. Seizures, particularly in clusters, are very common as are anxiety, ASD, ADHD, Intellectual Disability, and sometimes physical manifestations are present, such as constipation, sleep disturbances and delayed tooth eruption.
To neurotypicals, I appear to be “high functioning.”
I have no language delay or intellectual disability, and my seizures are controlled through medications. However, as most disabled people know, “high functioning” is a label used by neurotypicals to indicate that the disabled person does not need a lot of help from neurotypicals/able-bodied people to function in society. This does not mean that we are not struggling. The constipation has resulted in IBS; my current med causes acid reflux (GERD) and nausea, and my previous med caused extreme depression as did social isolation from my ASD; I have generalized anxiety and social anxiety to the point I stim after sending an email or having a conversation. I have accepted that close friends and a spouse are unlikely in my future. There are realties I have to accept, and this is one of two problems certain critics have with the current rhetoric:
- Neurodivergence can be incredibly disabling. For example, I have lost an internship. I lost a best friend and am unlikely to make more.
- What about co-occurring conditions that are very serious and cause the neurodivergence? Should we have a cure?
The solution to question one is one I have found in recent years through following disability rights advocates: the reason that neurodivergences are so disabling is because society is not built for us. If someone is non-verbal, then they are considered “low functioning,” and neurotypicals point to them as an example of why we should have a cure. But what if they had proper support? What if we found a way to communicate with them that didn’t involve speaking? What if we let people stim? These are solutions that are not socially acceptable to neurotypicals, and as a result, Applied Behavioral Analysis (ABA) has become popular. This is despite the fact that some, including me, consider ABA a form of oppression.
Neurodivergence is disabling because of the ableism in society, not because it itself is a pathology.
My condition is a perfect example of my one problem with the neurodiversity movement.
My autism, ADHD and generalized anxiety all came out of my gene mutation. The gene mutation has also led to serious epilepsy. Some people cannot control their seizures with any therapy, and the future cure to PCDH19 epilepsy will be genetic therapy. Given the science I have seen, the mutation should be fixed before neurons attempt to make connections with each other if we hope to cure this condition. That is really early on in pregnancy but is most likely what needs to happen to prevent incredibly disabling seizures that disrupt brain development. Each seizure hurts the brain a little bit more, and if occurring at night, they disrupt sleep. If you cure or prevent the epilepsy, it seems likely to me that the child will not be neurodivergent.
What do we do, neurodiversity advocates?
I want to know. Because, according to basic genetics, there is a 50% chance that my future child will have this mutation, and if it is a girl who inherits the mutation, she will display some sort of phenotype. Do I adopt to prevent a child from suffering disabling seizures and GI disturbances? Because if I do, then I am likely preventing a child from being neurodivergent, or do I have a child I know is going to suffer because of the underlying pathology?
I want more neurodivergent people in the world. That is the only way that neurotypicals/abled people will listen.
Only then will we have a shot at acceptance, but what do you do when that neurodivergence is caused by a pathological condition? This is something I have struggled with. If all neurodivergences did not come from underlying pathologies, I would get what the movement is saying, but what do you do when the underlying pathology causes the neurodivergence? There are so many like me out there, and we all feel conflicted.
Let’s find a place in the movement for those of us with underlying pathologies. Because the two sides right now are “cure” and “cure = eugenics/oppression.” There needs to be a third option: cure/prevention if the neurodivergence comes from an actual pathology causing physical/problematic neurological manifestations. If the movement acknowledges that not all neurodivergences are created equal, then there is a voice for a lot more people in the movement, including me.
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