About “Functional Play”

When I was a child, I had severe deficiencies or delays in functional play skills, particularly with imaginative and cooperative play. (Or, that’s how a psychologist would put it.) I was taught some play routines — I learned to dress and feed a doll, assemble plastic food in a play kitchen, or move a stuffed animal as though it was running or walking. My grandfather built me and my sister beautiful dollhouses, and I could carefully set up each room with Playmobile furniture and even tiny figurines. But then I would hand the dollhouse over to my sister, and wander off. I couldn’t depict any kind of imaginative scene unless someone else was creating it for me and telling me what to do. And I wasn’t really interested in figuring out how to, either.

What I did instead was pace, for about 8-10 hours a day. Back and forth, back and forth, wearing footpaths in the grass until my Dad would make me move to a different part of the yard so the grass could have a chance. (It wasn’t usually able to grow back. There were plenty of days where 10 hours was an undercount.) Sometimes I would walk on my toes; sometimes I’d adopt big, stiff postures, or bounce up and down. I’d move my arms high or low or to the side, but my arms were always moving — I’d flap my hands, or shake a stick, or, most often, shake a book in my hands. The book had to be just the right size, with just the right kind of paper, held in just the right spot. I destroyed dozens of books over the years this way; pretty soon, my parents learned to buy me cheap paperbacks specifically for this, to keep the other books safe. My mouth was open and my face was vacant. Sometimes you could hear me talking to myself, and if you listened, you would hear that I was scripting, or reciting lists. Usually I was silent. I would avoid other children and I refused to play with my own siblings; I wanted to do this instead. I would do this at preschool, at family gatherings, at church, and in the store. I would do this all day.

It alarmed everyone.

I did this through high school. I learned not to do it where other people could see, but the intensity didn’t abate. It only began to slowly fade away after I turned 17, replaced by other stims and some cognitive-motor changes and, perhaps, growing up.  If you saw it when I was little, you can still find the traces of it now — I still pace when I’m working out a new idea. I wrap beads around my wrist instead of shaking a book to pieces. I still spend hours most nights doing repetitive activities while my mind wanders. 

No one considered this “functional” play. Every expert saw this as something that was very likely harming my development — or, best case scenario, as an indication that I was having a hard time, with the behavior as a barometer for how bad things were. My parents ultimately didn’t try to get me to stop outright (for which I am profoundly grateful), but everyone agreed that it would be good if I could, and any fleeting reduction was celebrated or, at least, seen as a sign of progress. 

I still don’t have the skills for imaginative play. Toddlers are happy to boss me around, but preschoolers get frustrated that I can’t keep up or contribute my own ideas to the play. I love stories (although my narrative comprehension is limited,) and sometimes with friends I can co-create something heavily scaffolded — but even Dungeons & Dragons is beyond me. I will obediently set up a highly realistic dollhouse for you, although it still bothers me that the house is usually missing an entire side. That can’t be safe.

My point in sharing all of this is to say: I would have been considered an ideal candidate for therapies aimed at building typical play skills. My disability in this area was obvious and highly visible and often, especially to people outside my family, disturbing. I am still lacking some basic skills possessed by most three year olds. 

And yet.

And yet.

My play — not my “behavior,” my play — was deeply functional, for me. Those hours and hours of often silent scripting while regulating my body let me develop a deep bank of fluent language that other people could understand. When I can rattle off fluid paragraphs to you about a topic, it’s because I’ve put in those hours of scripting and practice, even today — and because, long before I was practicing how to explain autism or talk about policy, I was practicing different sentence structures for hours in the backyard. That was not at all apparent from an outside point of view. But that’s what I was doing. And when I wasn’t scripting, I was making and reciting lists and schedules — and that was giving me a structure for understanding my world. 

And most importantly? It just felt good. It was calming and reassuring. I am told that is one of the main developmental purposes of play, in fact.

There’s an intense debate raging right now about what constitutes appropriate targets of intervention for autistic children. Self-advocate opposition to abusive practices such as applied behavioral analysis (ABA) has become so vocal and well-known that service providers, researchers, and parent advocates are being forced to admit that perhaps some common therapeutic approaches may not be universally welcomed by the autistic children subject to them. There is more and more interest in discussing what a neurodiversity-informed approach to therapy for autistic kids might look like. (Tip: it’s probably not therapy, and it’s definitely not an “intervention”.) This is a good and long-overdue thing, but it’s not necessarily yielding the fundamental rethinking needed. Even when folks agree that ABA isn’t the way to go — and there are still far too many folks clinging to that golden calf — would-be allies still frequently fall into the trap of changing their language or their aesthetics without changing their beliefs or the core of their practices.

The most obvious example of this shows up as attempts to usher in a “new” ABA. This might look like “play-based” ABA, Pivotal Response Training, or a model that purports to blend ABA with a developmental approach. Only positive reinforcement is used, and that reinforcement is as “natural” and as (disturbingly) relationship-based as possible. The kid and the therapist are both on the floor, laughing, playing, and having fun. But it’s still at its core all about shaping autistic traits into neurotypical-seeming behavior. There’s a list of things typical children do, and the goal is to, over time, mold autistic children’s natural ways of being until they do the same things the other kids do. It’s just the same old ABA with a new hat on.

A therapy doesn’t even have to be ABA to have that same goal, either. Many developmental approaches have this same bias and can be applied in the same way. Oh, they use nicer language — they talk about wanting to get autistic kids connecting, relating, and playing. But the same fundamental assumptions are there. If we aren’t doing things the way other kids are, that must mean we aren’t connecting, relating, playing, learning, developing. If an intervention succeeds, we might not look exactly like the other kids, but at least we’ll be hitting the same milestones and doing the same kinds of things. We know those things are important, because the other kids are doing them. Simple as that.

There are a hundred things I could say about why these ways of thinking are so harmful. ASAN just put out a whole toolkit covering this, and self-advocates have written about different elements of this for almost 30 years. Ari Ne’eman has a great piece on passing goals if you want to start there. But for today, let’s stay focused on play. Rachel Dorsey has a fantastic  illustration of the issues we’re talking about in the images below:  

[Image description: Yellow-orange background with a circular image of a hand pulling up a zipper. Brand logo is center, bottom of the slide. The headline reads “Instead of Shaping Autistic Play into Neurotypical Play . . .” Below that is text which reads, “Ex. Julio loves zippers. First, you “bond” with him with his favorite zippers. Then, you find dolls that have clothing with zippers and clap and praise him as you encourage him to dress up and hug and kiss the doll. Then you find clothing without zippers and praise Julio for doing the same thing. It seems like he is enjoying the play (and he might be, to some extent), but he is, without a doubt, more invested in making you happy and getting more praise.”]

[Image Description: Light golden orange background. At th right is a circular image of hands fitting different shaped wooden blocks together. At the bottom, center is the brand logo. The headline at the top reads, “Try to Understand and, Then . . . Embrace Autistic Play!” Below that, at left, is text which reads, “Julio loves zippers. You find backpacks, pants, jackets, etc. with all sorts of zippers and bond over them together. You find out that Julio likes zippers so much because of the satisfaction of the parts fitting together. You find other things that fit perfectly together, like puzzles, Duplo blocks, large locks and keys – not to change his play but to bring more Autistic joy. And if he doesn’t like those? No problem. Think creatively of what else to do with zippers.”]

These slides provide a vivid contrast between two approaches to autistic play. And it shows how easily the language of neurodiversity can be co-opted to describe the same-old, same-old. Many practitioners would describe the approach used in the first example as strengths-based, play-based, and person-centered. Many would say that by using that approach, they are affirming neurodiversity. But at its core, that approach is still clearly about shaping autistic traits into neurotypical-passing behavior — gently and cheerfully, perhaps, but inexorably. And that harms autistic kids. That is the opposite of what neurodiversity-affirming therapies are supposed to be about.

Who cares if the kid learns to play with the doll like other kids. 

Who cares. 

Certainly not the kid!

I think it’s hard for some NTs to understand what the “harm” is in that first example. How does learning to play with a doll “harm” anyone? The kid even seems happy! Often the answers self-advocates come back with are about the long-term harm of masking, and that’s a true and important piece of it. But I think these slides also do a really great job of illustrating the harm that comes from what doesn’t happen. When you focus on shaping the behavior of playing with the doll, you are missing the chance to genuinely connect with the child in his interest — which means he is missing an opportunity to experience an adult valuing and being deeply engaged with something he cares about. He misses out on that experience of shared joy and connection. He misses out on that validation and safety. And he doesn’t get support building critical skills like expressing why something is important to him, or exploring other things that match his interest in fitting things together, or building off of that connection to learn other things in a way that will make sense to him, in a trusted relationship with an adult who values his point of view. He doesn’t get those things. 

He learns how to dress a doll. 

We know that play has a variety of important functions for child development. Play helps children develop a wide range of motor, cognitive, emotional, and social skills. In typically developing children, play moves in close synch with language and cognitive skills and social development — imaginative play and symbolic thinking grow in tandem and support complex language, and cooperative imaginative play reinforces increasingly abstract thought. Kids use play to process emotional events, practice new skills and ideas, self-regulate, and decompress. This is all true. 

But wouldn’t it stand to reason that if autistic kids develop on a different set of trajectories than typical kids, with brains that process information and relate to the world in fundamentally different ways, our play might look different as well? 

And wouldn’t it be worth asking how autistic children are playing, and how that play might already meet those core developmental needs, rather than assuming that if we aren’t doing the same things as other children, we aren’t doing anything worthwhile at all?

And conversely, perhaps — if an autistic kid is meeting their need for play in a different way, what makes us think that learning to dress a doll is going to be particularly “functional” for them?

“Functional” play is an interesting phase. I’ve been using it this whole essay. It’s a commonly-used, widely-accepted, quasi-scientific word. It’s one of those ubiquitous phrases that works its way into every framework, and folks never stop to question what it’s doing there, what ideas it’s embedding into their approach. It turns out there’s a lot this little phrase is bringing with it.

First of course there’s the implicit idea that if “functional” play exists, so does “nonfunctional” play. This is the idea made explicit when autistic children’s play is dismissed as stimming, as pathological, as diminished or lacking or insufficient and in need of intervention. 

And then there’s the meaning of “functional” play itself. Functional play — that sounds pretty important! It must mean something pretty big. Well. I hate to disappoint you, but it just means to “play with toys or objects according to their intended function (e.g., rolling a ball, pushing a car on the floor, pretend to feed a doll).” I pulled that definition off of a random therapeutic website, but only because it’s the same definition used virtually verbatim by the vast majority of practitioners almost anywhere you look. It’s using toys the “right” way. That’s it.

(This is where I’ll note that autistic people are often clinically described as having a “limited range of responses to [our] environment.” But there’s only a set number of acceptable ways to play with a car. Okay.)

You can go ahead and teach an autistic kid the Approved Routines for using a toy. There’s plenty of programs out there promising to do just that. Most of us will learn the routine with enough practice — not all of us, but most. But that doesn’t mean that learning to perform a routine — even if we learn to do it in a way that seems very natural and playful — will actually serve the functions of play for us. It doesn’t mean that it will be functional play for us. It doesn’t mean that it will be a meaningful experience to us at all.

There’s nothing magical about dressing a doll. It’s just a toy. 

Fundamentally, I want us to raise the question of what “functional” play is. Instead of broadly labeling certain types of play (or behavior) as functional or nonfunctional, we should be talking about how a certain type of play might be functional for that child. If we want to talk about how typical children play, we can just say “typical play.” And then we can remember that whether or not an action is typical is value-neutral — but a therapy aimed at shaping a child’s appearance or behavior or development into something more typical is decidedly not.

We can support autistic kids in joyous, obsessive, atypical play. We can support them in play that NTs might not recognize as “play” at all. We can look at the sensorimotor, language, cognitive, emotional, and social experiences and skill building that play can provide, and we can find ways to make sure that autistic kids are getting that practice in ways that work for them. And we can back off and let autistic kids be autistic kids.

If my pacing and scripting had been recognized as meaningful play for me, it would have given my team clues as to how I was (and wasn’t) processing language and what support I needed to communicate more easily. It would have tipped off my team to how I learned best, how I processed what was happening in my life, what fascinated me, and what brought me joy. And they could have used those things to help me. They could have used those things to connect with me and build mutual joy and trust and safety. And they could have let me pace and do the work my brain needed to do (because it’s a cliche but it’s true, play is children’s work), without worrying about it.

I’m grateful to the thousands of hours I spent pacing and scripting and “off in my own world.” I’m grateful to the nonfunctional “garbage behavior” that my family let consume my childhood. Without it, I wouldn’t be able to write this essay. I wouldn’t have been able to process my world. I wouldn’t have been able to self-regulate, or free up brain space to learn new things. And even if those hours hadn’t fulfilled those functions, they made me happy. 

And I believe children — even autistic children — are owed some hours of happiness. 

“Play,” as it were.

#DressingWhileDisabled

There are two stories I could tell you.

One: I’m clinging to my roommate’s arm, trying to (re)learn how to walk in heels.

Two: a friend sent me a pair of shoes.

*****

One: I wore heels, once. I was in a choir, a choir that was a Really Big Deal, and the high school girls had to wear character shoes. I got the lowest possible heel, and I was okay, mostly.

I liked how they sounded on the floor, so sometimes I wore them in college, or to DD council meetings, or when I went to Washington. I think they had maybe a half-inch heel.

I lost my character shoes in the move. Two years went by. I tore all the muscles in my left ankle, every last one, and I couldn’t go to physical therapy.

I put on a new pair of heels, and I knew, instantly that I didn’t remember how to do this.

*****

Two: my life looks very different from high school. I am connected now, in some pretty formal ways, to hundreds of disabled people all across the world. A couple of weeks ago, one of those people, a Facebook friend who has done a lot to show me what living with pride and joy in a disabled body looks like, posted that she had somehow wound up with a pair of mary janes that were far too big for her. Did any crip femmes she knew want them?

They were a size 11. I usually only have 1 pair of shoes at a time, and let me tell you, finding cute shoes in your size when you are over six feet tall is not easy. I said so. She sent me a picture, I noted they had heels, we worked out the logistics.

A few days ago, they arrived. I was having a bad hands day, so my roommate helped me open the box.

I did remember how to put them on by myself.

*****

I am autistic. Just like the screenings warn, I walked on my toes when I was little, and until I hurt my ankle this summer, I still did. I can dance, kind of, not really. In my own way. I have a lot of trouble with conventional femininity: I wear long skirts and long hair after a religious upbringing, but I don’t have the motor skills or the patience or the social-cognitive something for most of the work required to do femme traditionally. I can’t put on my own makeup or paint my nails; I can’t fasten any clothes that a typical six year-old can’t. I used to be able to pin up my braids, but I lost that skill sometime last year after going too long without OT. The day you see me with my hair perfectly coiffed and my eyes carefully made up, in a coat that buttons and boots with no zippers, is the day you know I’ve either been married or placed on a Medicaid waiver.

Like a lot of disabled women hoping no one notices we’ve snuck into the professional world, I cling to the few scraps of traditional femininity I can hold on to with my teeth. My friend, another autistic woman in the workplace, calls it “femme-NOS.”

Being able to wear heels again would be a big deal.

*****

“We’re gonna walk around the room,” my roommate says, and I nod and hang on for dear life.

“Why did you want these?” he asks.

“The gala,” I say, grimly. One of these days I am going to be dressed to kill.

“Okay,” he says. At the last gala, he helped ferry me from guest to guest, guiding me through the crowd and staving off meltdowns and making the loudest night of the year mildly enjoyable.

“We’ll have to practice a lot.”

*****

One of my other friends runs a blog called CP Shoes, about disability and shoes and some other things. I know as soon as I volunteer to take the shoes that I am going to want to write a thing for her. I’m writing, again, because some things worked out and I have a little more energy, a tiny bit of space for words left in my brain on the weekends.

Some of my friends and I are starting to talk, in various places and various ways, about #DressingWhileDisabled. There are a lot of stories about disability out there, and not a lot of them look like our lives. We have to tell them ourselves. We have to tell them together.

I sit down, and there are two stories I can write.

One: I’m autistic, and there are things I have to learn and struggle with and overcome, like wearing heels.

Two: a friend sent me a pair of shoes, and on a night dedicated to celebrating disability and community and the way my brain and my body glitch at each other, I’m going to wear them.

I want to write a story about shoes and disability, about the connections disability community makes between people who are very short and people who are awkward crashing giants, about the ways my life has gotten so much bigger, about objects and ideas that get passed from person to person, about the ways that disabled women or crip femmes or we take care of each other when no one else will.

We’re taking it one step, one story, at a time. And these are the stories I want to see.

The Talk

There’s a new person in my life, so we’re having the how-my-body-works talk.

It’s a conversation I don’t think nondisabled people have. It goes like this: this is my body. This is how it works. It moves this way. These parts of can feel, and these can’t. This will hurt me, and this won’t. I want you to know these things. This is my body, and this is me.

“We should have the conversation about physical contact, but I don’t know how it goes,” she said.

“Well, fortunately, I’m really good at this conversation,” I said. “I have it all the time.”

I’ve been thinking a lot about the kinds of intimacy my disability forces me into. Most people don’t have to brief half the people they meet on what they can and can’t see. But the truth is that my body works like yours right up until it doesn’t, and if you aren’t ready for that, you could get hurt–or I could. So I have this conversation with dates, new doctors, friends, coworkers who are filling in and giving support. I have had this conversation on the grass, in bed, in exam rooms, on kitchen chairs. It goes like this: I have autism. That means my brain and my body have a hard time talking to each other.

Sometimes I give examples: I move funny, and I can’t always control it, and maybe most importantly, I can’t always start moving when I want to. Sometimes my skin can feel things; sometimes it can’t. Usually it comes and goes in patches. A lot of the time, I can’t figure out how to move. Sometimes I notice pain, and sometimes I don’t. Sometimes my body tries to pull itself apart. Sometimes I know in advance when I’m going to have a bad body day, but usually I don’t until I’ve dropped something all over the floor.

Some of the conversation is important: I feel pain differently, but I do feel pain. I can’t feel my body and use words at the same time. Being around other people is physically painful, always, every time, but sometimes it’s worth it. I don’t always realize I’m hurt or sick, but every time a doctor has found a part of my body shredded to bloody pieces by my own fingertips, it’s meant that there was something seriously wrong happening underneath–my hands knew before my brain did. Before I can stand up, I have to find my legs, but sometimes I get stuck. Here is how to prompt me. Here is what kind of power having those passcodes means.

Some of the conversation is weird: my body language doesn’t work like yours because I may or may not be able to move those muscles at any time–so I need you to look at me and make different assumptions. I move typically, until one minute you look at me and you see the way my hands hold a cup like a toddler, until my body twists and jerks back in joy, until I don’t move at all. I was born functionally blind, and then I gained a lot of vision, and then I lost some of it again, and now there are a lot of things I can’t see, for two different reasons. If we go into a new room, I will need you to tell me where to sit. I will ask to borrow your eyes, your hands, your brain.

It’s not a big deal, I say, and I need it to not be a big deal to you.

These are conversations I am good, or at the very least practiced, at having, but they still make me want to crawl out of my skin. Insisting on having these conversations, instead of pretending my body works in all the standard ways, means taking up space and focusing attention on myself as a disabled person. We aren’t supposed to do that. And because my disabilities aren’t necessarily visible, are easy to miss or to misinterpret at first as something else, my conversation partner might not understand why I want to have this conversation in the first place. It can be awkward and fraught–please understand this thing about me, please understand me–and there’s not much precedent. There isn’t a standard social script for this. There’s a temptation to just learn to avoid the need for the conversation entirely–just blend, just let yourself get hurt, just avoid other people entirely, rather than subjecting them to a litany of all the things that make your body different.

I still feel that way, sometimes, and sometimes I think I can get away with not having the conversation. And I can, right up until someone reaches out to me, and in the time it takes my brain to process what’s happening, decide to reciprocate, and send the necessary signals down and out to my body to start moving, the other person has paused, seen my lack of movement, and withdrawn, shuttering.

“Here is the thing about me and hugs!” I write, later. Here is the thing about me and touch. Here is the thing about me and my skin. Here is the thing about me and my eyes, me and my hands, me and my disability, me and my body. Here is the thing about me.

It’s a weird conversation. But I wouldn’t trade it for the years when I didn’t know how to have it. There were whole years when doctors and parents knew that I couldn’t see, that my leg muscles were knotted and my torso was floppy and my body didn’t listen to my brain, but no one told me, and so I thought I was bad.  My body didn’t work, I thought. I didn’t work. But that wasn’t true–it’s just that no one had taught me how my body worked, let alone how to talk about it. You shouldn’t have to be a stranger from your body. And I’m not, anymore, and I don’t want you to be, either.

This is my body, I say. Look what I found out. Look what I know now.

I want to share this with you.

 

 

Confession Of A Woman In A Refrigerator (Speech Without A Title 2.0)

lol conflating disability and DEATH so casually that nobody but disabled ppl notices.

So the thing is, most of this belongs at the bioethics conference, but, but, jesus.

I remember being in high school and not being sure why, exactly, college had to be a thing, because I was going to be dead by the time I was thirty.

(Two-thirds of the way there and I still can’t see more than ten years down the line and maybe, maybe a small part of what I’m doing is motivated by now or never, I’ll do this right.)

Why would I be dead by the time I was thirty? Well, every other girl like me never seemed to make it to womanhood, it only stood to reason.

At some point, and I’ve told this story so many times and it never stops making me want to cry, I started hearing about other disabled people. People who were older than me, people who weren’t about this thing is going to kill me one of these days, people who weren’t about living with, living with, living with, not dying from disease, people who were disabled and alive and not sick, not dying, but raising hell and building lives and screaming, screaming, screaming when we were being killed. 

People who used words like we.

I thought, we, yes. We. Okay. We can make this work.

lol conflating disability and DEATH so casually that nobody but disabled ppl notices.

When you are disabled, when you are traumatized and vision-impaired and autistic, even and maybe especially when you haven’t been given those access codes yet, you learn to see yourself as the walking dead. You are vast swathes of nonexistence, cut off and left for dead at every missed milestone and swapped pronoun and bruised shin and scar on your face. There are Other People, Normal People, People, and then there is you,  and you are defined by the parts of yourself that match to everyone around you, and then the vast swathes of nothing. Disability is absence, disability is inability, disability is death, and you are a woman in a refrigerator. 

It takes you a while to learn that you aren’t the one who put you in the refrigerator. 

It takes longer to learn that it wasn’t your body, either.

A lot of us never get to the point where we can say it was you, you tried to kill me, you made me think I was dead, you screamed about the injustice of putting me in a refrigerator while you, you were the one killing me.

lol conflating disability and DEATH so casually that nobody but disabled ppl notices.

And you made me think it was my fault.

One day, I will write a speech that isn’t this one, this choked and untitled remixed stew of you tried to kill me, and you made me think it was my fault, and now you will listen.

When you’re disabled, you see death everywhere, and it isn’t because your body stands out or doesn’t stand at all, it’s because everyone talks about you like you’re in a refrigerator, like you’re not real, like you’re dead.

And it kills you.

They kill you.

lol conflating disability and DEATH so casually that nobody but disabled ppl notices.

What I am trying to say is that of course, of COURSE, of fucking course we notice, because we can’t not, because the bioethics conference has one day for beginning-of-life issues, where they try to cut us out, and then a day for end-of-life, for those of us who slipped by, because last week twins in Belgium asked the state to kill them because no one ever told them that they didn’t have to go into the refrigerator. 

What I am trying to say is, my friend has a friend who uses a wheelchair and didn’t get screened for breast cancer because she’s already dead, right? 

And you, you, every single one of you who said we are helping, we are saving you, something cruel and unjust has been done, and then you made disability mean death and shoved us into the fucking refrigerator. You killed us.

I didn’t know how to die until you taught me.

lol conflating disability and DEATH so casually that nobody but disabled ppl notices.

Question: if nobody but disabled people know that disability and death are distinct and not overlapping concepts, does anyone really know? Or are we just trees in the forest, falling (well, growing, would be the point,) with no one to hear?

What I am trying to say is, I am now Someone Who People Meet, and I know that there is a vast we out there, and I know that I am living and a woman and disabled and that none of these contradict, and I dragged myself out of the refrigerator by the skin of my teeth and said you will listen to me now, and this evening I felt sick when some friends offered to transcribe something for me, and I still can’t see myself making thirty.

And what I am saying is, this thing is going to kill me one of these days, and what is going to kill me isn’t going to be my back screaming at me or my eyes turning off or my head going through a wall, it’s going to be everyone who says we’re just trying to get you out of your refrigerator. 

I pulled myself out of the refrigerator you put me into the day you started grading people into people and cripples. I pulled myself out the day another woman in another refrigerator told me, like passing on a secret, we aren’t dead yet. Someone let me out of your refrigerator, and you can never put me back in there again.

lol conflating disability and DEATH so casually that nobody but disabled ppl notices.

I’m disabled. I’m not dead. I’m not in a fucking refrigerator. I am living, living, living, and I am screaming, screaming, screaming. 

And, just in case you should care…

Yeah. I noticed.

The Loud Hands Project

So I’ve been busy.

INTRODUCING: The Loud Hands Project.

Our Story:

The Loud Hands Project is a publishing effort by the Autistic Self Advocacy Network. Currently, we are raising money towards the creation of our first and foundational anthology (Loud Hands: Autistic People, Speaking) and accompanying website.

Loud Hands: Autistic People, Speaking features essays, long and short, by Autistic authors writing on autism acceptance, neurodiversity, Autistic pride and culture, disability rights and resistance, and resilience (known collectively by the community as having loud hands). Questions posed to the contributors might include what does autism mean to you; why does Autistic culture matter; what do you wish you had known growing up Autistic; how can the Autistic community cultivate resilience; what does “loud hands” mean to you; and how do you have loud hands? The anthology is the first of a projected series featuring contributions from Autistic writers stressing the preservation and celebration of Autistic culture and resilience. The website will host shorter and multi-media submissions along the same lines, along with additional materials and videos, and serve as a focal point for the project and community.

Our Impact:

The Loud Hands Project is about survival, resilience, and pride. The Loud Hands Project is necessary because autistic youth face systematic oppression, abuse, and bullying every day. It does not “get better” for us—typically, upon graduation, it actually gets worse. This must change.

The Loud Hands Project is a structured, multi-facetted response by the Autistic community to the systematic disenfranchisement, bullying, and abuse experienced by autistic youth, young adults, and self advocates. Taking the form of a publishing effort by the Autistic Self Advocacy Network and spearheaded by Julia Bascom, The Loud Hands Project consists of multiple prongs organized around the theme of what the Autistic community refers to as “having loud hands”—autism acceptance, neurodiversity, Autistic pride, community, and culture, disability rights and resistance, and resilience.  We focus on cultivating resilience among autistic young people and empowering us in building communities and cultures of ability, resistance, and worth. To quote Laura Hershey: “you weren’t the one who made you ashamed, but you are the one who can make you proud.”

How You Can Help:

We need to raise ten thousand dollars ($10,000) to help cover the initial costs of putting together and distributing our first anthology and launching our website. Please consider making a donation here—every little bit helps!

Spread the word! Check out the share tools on our page, and please use them! You can visit our Facebook page, tumblr, and twitter too, and tweet about the project using the hashtag #loudhandsproject.

Theory Of War

I’ve told this story before.

I didn’t have any theory of mind until I was 13.5. I have a very poor autobiographical memory, but I remember the acquisition vividly. I was in gym, attempting to serve a volleyball, and I turned to Sarah, monologuing in my head about something (a strategy I had developed last year to help me with thinking) and she was thinking. I had a mental stream of consciousness in my head. So did she. I looked around the gym. So did everyone.

I was thinking about them. They could think about me.

I would never feel safe again.

A lot of things changed with that realization. I’d never gained any information from eye contact, but now it terrified me. I’d been abused by my peers, but now I realized that there was a persistent mental component as well. That they wanted to hurt me. They thought about me being confused and scared, and they liked it. I’d been doing very well without any sort of therapy or medications for almost a year—I was back at the doctor’s within a month, got another new therapist, and soon started medication. My panic attacks began to last upwards of 36 hours. I started banging my head. I damaged my eyes. I started gouging out my skin. I got a staph infection, and I almost died, twice. I am covered in scars and discolorations.

I am told that I was not, before this discovery, an anxious child. I generally felt safe.

(Inside, if not out.)

I owe a lot to my discovery of theory of mind. I just can’t think of one positive.

I can’t pass the Sally-Ann tests, even now. The language confuses me. But I do know, now, that other people have minds, and they can think with them. About whatever they want. About me.

Which means I will never, ever be safe. I never was.

After all, it’s not just that other people have minds. It’s that they can think things I don’t. They can be thinking about me without my knowledge. But it gets worse.

They can be wrong.

Maybe because I’m autistic, and people think (there we go again, theory of mind) that this means I am a robot. I would love to be a robot, personally. I am always very concerned with accuracy. The thing that upsets me most about “autism science,” isn’t actually the dehumanization and the consequences—it’s the bad science. The most terrifying and distressing thing in the world to me is something being incorrect.

Maybe it’s because I’m autistic, and thus a robot. Maybe it’s because I’m autistic, and therefore a simpler, lesser, smaller brain and in desperate need of order. Maybe it’s because I’m autistic, and therefore abused, and I know the consequences of acting on mistaken beliefs about someone, know them in my bones.

It’s terrifying.

My ability to acknowledge other minds means that I can converse more effectively than I could before. It also means I am never, ever safe. It means that I can see people being wrong, and I can see other people accepting and believing and spreading the misinformation, and I have to keep quiet. But to me, danger and anxiety and this is wrong are all the same.

So I am never safe.

I have theory of mind, now. I’d like to call it something more accurate.

Maybe theory of war.

memo re: self advocate bloggers

Blogging: not actually an ADL!
Writing long-form: not actually the same as being able to have a conversation!
Writing things on your own schedule: not the same as employable!
Verbrose speech/writing: actually a symptom of ASD!
Autistic adults: once rumored to have been autistic children!
The people you’re undiagnosing: actually have issues with feeding, toileting, sleeping, self-injury, communication, and independent living!
Privilege: a word that means something!

On Being Articulate

They say I’m articulate.

(I think about all the words that stay locked in my throat, and I give a small and terrified smile and look over their shoulder and into nothing at all.)

I’m really quite lucky I have such a command of language.

(There are maybe five people in the whole wide world I can talk to face-to-face without wanting to die, without having a panic attack, without needing to hurt myself or sleep for hours afterward. Two of them receive speech therapy. None of them obey the usual laws of dialogue. I know that, really, I’m lucky to have anyone at all.)

My verbal agility is a sign of something, they’re sure.

(When I’m trapped into a conversation in the kitchen of someone else’s home, I stare at the table and see nothing at all, and my throat closes and my ears ring and the world is small and distant and hot and I am agile because adrenaline alters our capabilities.)

I’m really quite social.

(If I am asked how are you I will always say fine. If you ask me anything at all I will throw as many words as I can in your general direction. I can have quiet hands but the loudest mouth, I’m very advanced, and for my next trick I’ll even ask what’s up with you.)

I can answer every question you might ever have.

(Except for what do you need or how do you feel or do you want anything or is this okay.)

I can request independently and answer yes-no questions reliably.

(I can request independently because I never make requests, which means independence, which means I must not have to but I could if I did, right? But if you ask me if I need help I will say no, and if you ask, as my hands fly around my ears and my shoulders go tight and small, if I’m okay, I will say yes because I can’t say no and if I could it would mean more talking and less space and I will say anything at all to get you to go away until my brain is my own again.)

I am verbose and prosaic in my speech.

(I am as helpless to stay silent when you speak to me as I am to move when I need to do laundry. I freeze, staring at my dirty clothes, and every cognitive break I own clamps down because I can’t, because there are too many steps, because this has been the Summer Of Laundry Wars and I have lost. But there are no steps at all in unhinging my jaw and going somewhere very far away and echoing, echoing, reciting and remixing scripts about Why I’m Not In School and What I Did This Summer and Why We Deserve Human Rights until the tape runs out.)

I have such a good grip on the English language.

(And such a poor grip on reality, going somewhere still and quiet and out of my head while my mouth turns tricks for you.)

I’m never told I’m impolite or out of place or off script.

(Bad, too serious, perseverative, disconnected, hateful, boring, too enthusiastic, dogmatic, of course. All of those. And that’s just for talking about a show I like, without even stepping on anyone’s toes. For being happy, for getting excited about something, for trying to share. For saying something that wasn’t an answer to a question. But everything’s fine, and I’m very polite, I’m very well trained.)

I can say whatever you ask of me.

(I’m very obedient.)

I’m an Acceptable Autistic.

(I never disagree with you to your face, and you’ll probably never hear about it because the gore in my stomach when you tell me I must be very high-functioning gets pulled down by the fear of quiet hands and you must not understand and I know putting yourself in other people’s shoes is hard for you.)

I’m a Forgettable Autistic.

(As a child, I didn’t cry when I broke my wrist, which meant I didn’t feel pain. I read about social skills when I was bullied, so I wasn’t mistreated. I didn’t cry when I was abused, so it wasn’t abuse. Now, I tell you it’s fine and I walk away, and maybe I sat in a hallway for two hours the other week, unable to remember how to stand, but I can tell you I’m fine so I must be.)

I’m articulate.

(So you don’t have to listen.)

Dear “Autism Parents”,

I want to clear a couple of things up.

1.

I don’t have autism. I am autistic. This is important to me. It also doesn’t mean that I “see myself as a disability first and a person second,” whatever that is supposed to mean. In my eyes, I’m Julia. Just Julia.

I cannot separate out which parts of me brain are wired because baby I was born this way and which parts of my brain should be marked off as AUTISM. Nor do I particularly care, to be honest. I am Julia, and a significant fraction of Julia is autism (and thus, via the transitive property, I am autism but that’s not the point). Am I a writer because I’m Julia, or because I’m autistic? My writing is good in its own right, I am told, and it’s also fundamentally shaped by my neurology–just like yours. I like Glee and Phineas and Ferb and also Sudoku. Am I allowed to have a personality and preferences, or just perseverations? Is my deeply and inconveniently round-about, pedantic, literal, and analytic way of thinking and using language a sign of a what a profoundly gifted child you were, Julia (and you know, no one ever tells the kids in the gifted programs that they see themselves as gifted first and human second, or that they should call themselves “persons who experience a label of giftedness”) or is it a symptom of some monster hiding in my neurons?

I would argue that it’s both, and that it doesn’t matter. Being autistic fundamentally shapes how I perceive and interact with the world, with a million cascading and subtle consequences. I would not be the same Julia I am now without whatever parts of my brain can be marked as AUTISTIC (and that’s bad science in the first place, the brain is a whole lot more complicated and subtle than that, we know that there isn’t one gene or one wiring variation that leads to autism). I also wouldn’t be the same Julia I am now if I hadn’t skipped eighth grade, or hadn’t spent a summer at Stanford, or hadn’t been in choir ororor…

I’m Julia, and I’m autistic, and I will apologize for, justify, qualify, neither.

2.

The dichotomy between being a person and having a disability is a false, and useless, one. It’s based in the notion that people with disabilities they can’t hide or that we can’t pretend to ignore aren’t people. In a certain, socio-linguistic, sense, that’s true. Disability is used to mean something inherently bad and wrong and scary and consuming and destructive and sick, and why would you ever want to include that in any way in your identity or personhood? I myself have said that in a perfect world, there would be no such thing as disability. But please, pay attention: it’s very, very important to look at how the same word can be used a few different ways here. In the above scenarios, where disability means bad, I’m quite literally talking about what disability means, what the word is used to signify, what attributes are assigned it, how our current modern Western society places it in context and value. But that’s not what disability inherently, objectively, physically and literally is.

When a car is disabled, it doesn’t work the way it was designed to work anymore. Human beings, though not designed and constructed in factories like cars, are similar. There is a certain range of activities and capabilities to which most of us are accustomed. When someone isn’t able to match up, they too become disabled. Difficulty walking, talking, hearing, seeing, eating? Disability. This is what disability is.

Notice, though, that when a car stops being drivable it doesn’t also stop being a car. Similarly, a human who can’t do some expected human things doesn’t stop being a human. In some contexts, a car that can’t drive is a bad car, worthless, lesser, low- or non-functioning. In others, though–art, architecture, scrap metal (remember, humans aren’t cars and these examples don’t have direct equivalents for us, please don’t try and find the scrap-metal humans), a car with an exploded wheel is valued positively. Similarly, in a world without stairs, using a wheelchair can be an advantage. In a world where everyone uses sign language, only speaking with your mouth is a disadvantage. Meaning and value and worth get assigned to people based on how useful their range of capabilities and potentials are for various activities. A person who can’t participate in the activity they are expected to is disabled. This is what disability means.

A disability is a stigmatized difference, one we haven’t found a slot for yet. I would love for that stigma, that disabling context, to go away. The raw physical difference itself though? It’s a part of me, and I’m not going to hide it, ignore it, or lie about it.

3.

Quite frankly, it doesn’t matter whether or not I see myself “as a person first, and a disability second.” It’s not going to keep me safe. I know exactly what the other people in the store think when they see me rock, flap, cover my ears.

On the internet, maybe, I have the luxury of expounding on the finer points of person-first versus identity-first language. In real life, in a world where our parents kill us, our classmates abuse us, and our employers are virtually non-existent? I really don’t have that luxury.

4.

As long as there are people demanding that I call myself a person with autism, as though I am just cohabiting with two different brains, one of which I should really want to discard at the soonest possible opportunity, I will call myself autistic out of sheer defiance. The autistic parts of myself are always what are going to be punished and cut away at, they are what are going to get me hurt and killed, and I will put them in the front where everyone else already sees them and fly them as a goddamn flag.

5.

I am not flattered when you say that I don’t really see you as autistic or it’s just a label.

Because what you mean is that “I don’t really see you as Bad right now,” and while I am incredibly grateful for that safety, I am also furious that autistic means Bad at all in the first place and that I feel I have anything to be grateful for in that entire situation.

It is, indeed, just a label. One without nearly the neutrality of, say, Campbell’s Chicken Soup. All your wishing in the world won’t change that, and taking away the words I have for my experience just hurts me so you can feel a little more enlightened.

For the record, I don’t really see you as much of an asshole, usually.

6.

“But my child!” you say. “My child can’t feed themselves! My child needs diapers! My child cannot be left unsupervised! My child is medically affected!”

Well, yes. Your child is disabled. So am I. I thought we were past that?

(Is Stephen Hawking low-functioning?

My child is no Stephen Hawking. Indeed. Neither am I. No offense, but neither are you.)

So often the dividing line between really disabled (my child) and high-functioningaka not really disabled(you, a self-advocate disagreeing with me) is writing a blog post or making change for a purchase or reading. I remember being told that if someone can add and read, they can live independently. Well I hate to break it to you, but I am very good at both of those things and I can’t live independently, not even close. I just don’t think that this inability makes me worth less or nothing.

I’m not disparaging the reality of complex developmental and physical disabilities. My own world must function in a parallel and yet fundamentally different and separate realm from even that of my typically developing sister. I have enough imagination, enough personal experience with my own disability, enough time spent living and working with other disabled people, and enough of an ability to hear what people who live with complex developmental and physical disabilities have to say, to know that in some sense it’s a question of scale and that the experience can be dehumanizing for everyone involved.

I’ll spare you the gory details of my life, in part because they are private and in part because I refuse to be a self-narrating zoo exhibit. Been there, done that, Temple Grandin and Donna Williams are better at it. I’ll just say this: it never ceases to amaze me how an entry posted every two or three weeks in the ether about deserving human rights somehow reveals–or, rather, erases–the every intricacy and ramification of a person’s disability in their life.

7.

If my child could write a blog post like this, I would consider him cured. Fascinating. Have you taught him how? Have you given him the time, tools, technology, and accommodations he would need to do so? Have you exposed him to the ideas this blog post runs on, or has he been sheltered and infantilized? Has he been given an accessible, for him as well as his audience, means of communication? Remember, behavior is communication, that’s Best Practice. Have multiple literacies been facilitated? Remember, everyone reads, everyone writes, everyone has something to say is the current forward-thinking in special education, especially for children with complex access needs. But you’re an advocate for your child, of course you must know that. Silly me, I apologize.

Have his attempts at self-determination and self-advocacy be respected and responded to, regardless of form, or has he been taught that passivity is better?

If he were to want to blog about his favorite cartoon, would that be okay? Or does it need to be serious, age-appropriate, legitimate-in-your-eyes business, every time, all the time–because there are no frivolous blogs anywhere on the internet, are there.

If he were to want to document and share his thoughts via, say, music or a painting or an arrangement of objects, would that be okay? Or must it be words?

Are there limits on chances for this? Is any human being ever stagnant?

Oh, and by the way, your child is still a child, right? How many children blog, do you know?

Sorry, I thought this was worth taking seriously.

8.

I am not going to make nice.

It’s a common directive. We all want the same things. How can we ever expect anyone to listen to us when we can’t disagree respectfully amongst ourselves?

I am not going to pretend that a power imbalance doesn’t exist. I am not going to pretend that when non-disabled people attempt to end a discussion with self-advocates they did not enjoy, it is with chastisements and pleas to just get along which hit about a million times harder when aimed at someone who’s been taught to have quiet hands and who’s first sentence was Iwantball PLEASE and who, when they were bullied, was sent to social skills training while their abusers were left roaming in powerful packs of friends.

(In no other minority community is this level of power-play tolerated. You are not our voices, we are not the same, we do not want the same things, and if you aren’t disabled? Then by definition you are not a member of the disability community.)

You have the power. If you do indeed, as you claim, want to be allies, then I suggest you start acting like it.

(And, because I must be nice and patient and helpful and I must educate the people telling me to shut up: for god’s sake, if being an ally, let alone a super-special parent ally, is so very hard, check out PFLAG.)

9.

This is not a “disagreement.” You know what people disagree about? Pizza toppings, ice cream flavors, what Shakespeare meant in the third stanza. Things with small consequences.

You know what happens when we “disagree” about disability?

People die. People get aborted, people get institutionalized, people get sterilized, drugged, and neglected, people go without necessary support and services, people are dehumanized, people are abused, people are silenced, ignored, and erased, people suffer emotional and mental trauma and distress with life-long consequences.

Just as “disability” has become an ugly word for a physical fact, so “disagreement” is being used, here, as a polite word for an ugly thing.

I call bullshit.

10.

I started blogging, years ago, as a therapy tool, as a way to modify journalling so it would be accessible to me. It turned, slowly, oddly, and very autistically, into a method of communication. Now it’s one of the ways I advocate for myself and my people. Mostly I think of it as a survival strategy.

On days like today?

It’s just a lifeline.

To The Beautiful Boy Working The Genius Bar At The Apple Store-

I think the first thing I need to say is sorry. You, you with the prettiest eyelashes in the world and bright liquid eyes that made me forget to breath when I forced a glimpse at your profile for politeness’s sake—you have done nothing wrong. Your only crime was being assigned a girl with an inexplicably broken computer who could break you simply by averting her gaze.

I know I hurt you without even meaning to because you are kind and beautiful with a smile in your voice and you kept trying to catch my eye and coax a connection out. You never grabbed my face, you never ordered me to look at you, you never forced me to drown in your eyes, you just kept smiling and coaxing and worrying until you were a confused an rejected puppy. You never made that my fault, either: you wracked and searched yourself for what you were doing wrong, for how you were hurting me.

I wanted to come back to the Apple Store afterwards, clutching the warm cookies I had purchased myself as part of the intricate bargain I’d worked out to permit myself to brave the mall alone. I wanted to come back, and smuggle you a cookie, careful of crumbs and keyboards, and explain.

Beautiful boy, 12 people pressed into a 12’ x 12’ space hurts me. The lights and movement in the mall hurt me, the perfume and music pouring from Hollister hurt me, the building renovations and constantly shifting stores hurt me. I came to you reeling and battered and you, kind, beautiful boy, had me leaving the store with poetry in my head.

(I wondered, kind and calm and perfect boy, if maybe you have an autistic sister or girlfriend like me, because I’ve never had such perfect, easy, accessible service.)

You seem like the sort of boy who might understand, in your fingertips and the neglected spaces behind your ears, what I mean when I whisper about disability as violence. You might understand embodying a brain and a way of speaking and moving and an existence of violence and victimization and forced memory and reminding others. You might understand shattering between bones of steal and searching for glue. You might understand as being seen as fundamentally violent yourself.

You might understand this, I think, because the compulsion to break and undo and ruin exquisite things runs as deeps in humans as our need to protect and hoard them, and I suspect the second leads to the first. This is cruelly and hideously unfair to everyone, but I suspect it is worst for the beautiful, breakable boys like you.

I wish you well. I write to you because I can hardly write this to Kody or the others, and of course I’ll never send this to you. I guard my own violent and violated beauty too closely.

I think my computer might behave now. Thank you. When I left I almost reached out and touched your arm. I almost tangled our scraped nerves together. I almost said “you have beautiful, beautiful eyes, and I do too, look.” I swallowed it down with a dozen quiet, desperate disclosures of I’m autistic instead and promised myself I’d write.

The new OS installed beautifully.

Thank you.

~Julia