Neurodiversity is for all of us.

Everyone in my immediate family has a disability. All of us are impacted differently. Some of us speak. Some do not. Some of us have hyper focus. Some have distracted focus. Some have high energy. Some have low. Some are readers and in love with collecting knowledge. Some struggle with reading and showcasing knowledge. Some are emergent communicators who are working on letter sounds and exploration.

The neurodiversity movement includes all of us.

I’ve been seeing this problematic trend, popping up in tweets and The Guardian, that writes about neurodiversity as a movement for speaking or employed autistics only. It says that neurodiversity doesn’t include those with learning disabilities or intellectual disabilities. It says that people who are married and employed cannot be impacted by their disability or understand anything about the life of someone who is neither.

None of this makes sense to me. It is a gross misunderstanding of the concept, and feels somewhat like deliberate misleading.

First, yes, the self-advocacy movement includes those who are non-speaking or who have intellectual disabilities. It is hands down my FAVORITE movement. It is one that says — yes, yes, your daughter too has rights. Yes, her communication is valuable, whether it is in sounds or gestures or hand-flapping or on her AAC device. She doesn’t have to prove herself. She doesn’t have to become literate or a math genius or dress herself. It says that she is worthy of belonging to her community, her school, her world — as she is.

And the places advocating for her inclusion? For assistive technology? For accessible physical environments? For a living wage that will ensure she has access to high-quality personal care attendants? For access to healthcare and real literacy instruction and a life that SHE designs? It’s the neurodiversity movement. It’s not the “autism mama” movement, which pushes for private day school and segregated ABA-centered settings. It’s not the ABA movement, whose assessments label her as a “pre-learner” and excludes her from even being with peers in a special education classroom. It’s the neurodiversity movement. It’s her teachers and aides who, knowingly or not, have adopted the mindset that she is who she is and their job is to help her access HER best life.

Second, there is this misconception that neurodiversity does not acknowledge disability. To me, this image is more a reflection of our cultural understanding of disability (and our culture’s unwillingness to accommodate). Over and over again, you will meet self-advocates who speak both to their strengths and their challenges, who say “I have a disability AND I am proudly autistic.”

Yes, disability can be hard, even before adding the layers of cultural ignorance on top of it. Yes, experiencing psychosis and major depression and devastating anxiety can be awful and isolating and miserable. But nowhere is there anything in the neurodiversity movement that says “you’re not included” or “this never happens”. Instead, they beg for research to be spent here, on the things that make a real difference in quality of life. They ask for researchers to look at what accommodations and medications and treatments can give people access to the life they need — rather than spending more time and money on curing autism or ABA or vaccines, again. Autistic researchers are leading the way as they research how current “treatments” often create and perpetuate PTSD. Never is the neurodiversity movement against improving quality of life. It’s about improving quality of life without having to stop being who you are. It’s about the world changing to accommodate difference, instead of individuals being expected to hide, change, or smooth over their differences.

Lastly, we cannot judge someone’s experience of their disability by what we see on the outside. I’ve seen this hurt so many children and adults, who don’t get accommodations they need or have to work so, SO hard because the world thinks “you look fine”. I have also seen many children lose access to things they need or love (soccer teams, theater arts, a general ed academic class) when someone realized that, oh, wait, they aren’t as “high functioning” as we thought.

I work. I have a strong marriage. I have two beautiful children. I also have a lot of accommodations from my family that allow be to do those things happily. Before I had those things? I was nearly suicidal from the effort of it all.

Here’s just a small sample of how my life is impacted:

  1. I take medicine for my anxiety.
  2. I have clean clothes and clean dishes because of my husband.
  3. My husband has to remind me to take a shower. I would go weeks and weeks. Like, when people say “how do you count the pool as a shower?” I’m like “It doesn’t?” Because it just doesn’t click in my brain. (Good thing for husbands.)
  4. My husband packs my headphones and my fidgets and anything else I need to accommodate myself when traveling.
  5. My husband makes dinner. Because it it was up to me, we would either eat the exact same food for weeks or order take-out online all the time.
  6. He also explains things to me, like if a friend, colleague, or supervisor said something and I didn’t understand their meaning or intention — I save it to ask him about later.
  7. One hour of socializing in a group of 2-3? That means a 1-3 hour nap to recover.
  8. My children get screen time right after school so that I can have a solid hour to recoup my spoons from the day.
  9. I regularly use text message to communicate with my husband because talking would be just too much and feels / is impossible.
  10. I often walk out of stores without buying anything I am supposed to (or buying a whole bunch of stuff I just threw in the cart) because I just can’t deal with them.
  11. I refused to drive for a long time because of said anxiety and could only go places if someone else could take me. Basically, I went nowhere.
  12. I absolutely have grown-up meltdowns, including stomping my feet and hitting my legs and screeching and storming off to my room.
  13. I have annoyed my friends and family to no end watching the same show, singing the same song, bursting into song at random, making noises, rocking, and so on. (My current favorite is a Fresh Off the Boat line: “I asked for the Randy and he gave me the Brad.” I can say this repeatedly to myself and laugh for 10+ minutes.)
  14. I have gone home crying and torn apart from work on days where there was just too much talking. Too. Much. Too MUCH.

These may not seem that dehabilitating, I guess, but the point is more this — no one would know. No one at my work would know. That’s not including the one million accommodations I’ve slowly built up for myself over the years. The endless mental checklists, the dozen alarms on my phone, the to do lists I print to keep myself organized and on tasks.

And my husband would probably have his own confessions list of things that are hard for him, things I help make happen. We are a symbiotic relationship. We are a one in a million match, making each other better because of it.

As an aside: What’s even sadder to me is that I feel so intensely vulnerable sharing this list because there are people in this world who would hold these against me. I am a FANTASTIC teacher, deeply, and an AMAZING mom. People are blown away by the way my kids have grown and matured over the years. They are so loved and cherished and encouraged. Yet there are people who would read that I have some meltdowns and bad personal hygiene and think that I am not a good parent.

All of that to remember — what’s on the outside doesn’t always reflect what’s on the inside. And we shouldn’t have to disclose what’s on the inside to get accommodations and access and respect. I also can guarantee that, while my daughter’s experiences are different than mine (she is her own person, after all), I can empathize with her in a way that someone neurotypical cannot, someone who has never had a meltdown about sounds or number of foods or what time her show is supposed to be on. Does this mean that someone who is neurotypical cannot be a good ally? Of course not. It just means that, yes, wherever someone else arbitrarily places you “on the spectrum” — you have value and worth and important things to add to the conversation.

Because that’s what is so beautiful about the neurodiversity movement — it is, by its very nature, inclusive. It is for all of us. It is about all of us being able to be ourselves, fully. I don’t know how anyone can be against that.

The right to NOT talk.

image of an iPad screen with a grid of icons for voice output. the message bar reads: "I don't want to! Grumpy"We all have times where talking is not happening. We ignore questions. We don’t answer the phone. We flat out tell others that we don’t want to talk. Some of us have times where we simply cannot talk; I’ve had many conversations with my husband via text message. At other times, we may want to talk — just not about the subject at hand. Our partner may ask if we want hamburgers or grilled cheese for dinner, but we answer with complaints about something that happened earlier during work.

Yet, this is forgotten or completely thrown out the window when it comes to the students that we serve (and children, generally, in our compliance-driven society).

We ask students what they want (often within limits). If they begin talking about something else, then we take it as proof that they weren’t listening, that they don’t understand, or that they don’t have the ability to answer. They talk about Diego, because it’s their all-time favorite, and we say they “perseverate” or “only know one word”. They don’t use their talker on demand, and it’s written off as “inappropriate” or “not being used” or “they don’t know how to do it” or “too much”.

We need to ask ourselves: what is our goal? Is our goal for students to say what we want when they want? Or is our goal for student’s to have a voice? Because a voice means they get to say what they want when they want.

A voice means being able to talk about your passions, whether they are Diego or the alphabet or worms. A voice means being able to change the topic, interrupt, or ask for something that wasn’t on the menu.

A voice also means being able to NOT talk.

It means that I don’t have to answer your questions  — not when you want me to, and maybe not at all.

It means that I can go hours without talking, or days, or whatever, because it’s my voice and I can use it when and how I want it. I can be silent, and I won’t have people then try to take my voice away.

Autonomy isn’t autonomy if it’s only allowed at the convenience of adults and professionals in students’ lives. A voice isn’t a voice unless we grant the full range of freedom — freedom to use, but freedom to not use as well.

Silence is okay.

Silence doesn’t mean “doesn’t know”.

Silence doesn’t mean “doesn’t need”.

Silence certainly doesn’t mean “take my voice from me”.

Silence is just that — silence. And everyone has the right to it.

What is play?

perfect lines of large alphabet letters in red, blue, and green, sitting on a blue rug
I have really strongly moved away from writing an IEP goal for “play”. What do I mean? I mean things like this:

  • Play functionally with X number of toys for X minutes
  • Engage in cooperative pretend play for X number of minutes
  • Appropriately play with XYZ toys

Basically, anything that includes “functional” and “appropriate” and dictates HOW a child should play. Because that’s not play.

Play is, by definition, self-directed and for the purpose of joy. It is not what someone else thinks we should be doing. It is not for some practical purpose. It is not limited to one (neurotypical) way of interacting with materials.

Lining up trains is play.

Stacking and knocking down blocks repeatedly is play.

Waving a ribbon is play.

Filling and dumping a cup of rice, creating L’s out of Legos to stack on the corners of tables, jumping on a trampoline, sitting by yourself to examine letters for extended periods, linking little cars and big cars by yarn, sticking glow sticks in any spot you can find… It’s all play.

What is the purpose of forcing a child’s play to become something other than it is? To become “normal” and “functional”? (Who defines functional, by the way?) What do we think we are teaching? And what is the child learning?

I don’t know that I can answer “what we think we’re teaching”. I’m really not sure. Because everything I think is important can be taught and experienced through the child’s own play: curiosity, exploration, creativity, shared enjoyment, communicating your likes and dislikes, learning about the world… Imitation, language, and academic skills can all be modeled and experienced without forcing the child to switch from play to work. Because play done in a specific way with specific materials is work. So I’m not sure what the answer to that is.

But I do know what the child is learning: that the things they find enjoyable are not okay. That there is one way of being in the world, and they do not know it. That being themselves is not okay.

Do I think that most professionals or families have the intent to teach this? No. Do I think most students and children are learning that anyways? Yes.

It comes back to this: we need to re-think what skills we are teaching and why. There are often other ways to get at what’s important, ways that don’t involve shutting down a child’s unique way of being in the world. Dig deeper. Ask yourself: what am I really trying to get at? What’s actually important in this moment? How can our classroom environment be changed to better accommodate this need? How can we teach peers and ourselves to better accommodate this need or celebrate this difference?

Different doesn’t mean wrong. Different doesn’t mean it must be changed. Different just means different.

 

 

 

This is part two in a series on selecting what’s important in our special education classrooms. Check out the first post here. Future posts will selecting target goals and teaching social skills as a form of code-switching.

Selecting skills: But why does it matter?

blue Thomas train leading a line of toys that includes a broom... a shoe-less foot is peeking in to the edge of the frame.When people enter my classroom, they are sometimes confused. There is a lot that looks different from a typical classroom. A quarter of our room is filled with things that one would typically see outside: ride-along trains, cars, slides. Half of my class spends their days without socks or shoes. If we are in a large group setting, students may be seated at the table. They may also be doing something else in the back of the room, pacing near to the large group, or coming back and forth from the table. Independent work happens on the floor, standing at the table, in rocking chairs, next to squeeze machines. Students engaged in child-directed play may be stacking, lining up items, or scripting. Not only that, but you’ll find classroom staff delighting in these things, expressing joy right alongside the students.

People see this and think that I am permissive and lenient, that I don’t believe in my students, or that I am not teaching them.

Yet — I get good outcomes. Scratch that — I get great outcomes. My students master their IEP goals. My students develop a ‘functional communication system’. Their self-injury, aggression, and meltdowns disappear over time. They learn to tell someone no, to be more independent, and build relationships in ways that honor and support their needs & desires. My families are very happy with the learning that happens in our room, sometimes the first big progress that a student has made. My students and families trust me, which is even more important.

And this doesn’t happen in spite of the environment, but because of the environment.

My classroom environment respects neurodiversity. My classroom expectations respect neurodiversity.

Whenever we set an expectation in my classroom, I ask myself: but why is this the expectation? When we choose a skill to target for instruction: but why are we selecting this skill? I don’t just accept my first answer, but dive deep into it. Where did this expectation come from? Is it necessary for safety? Is it necessary for learning? Is there an alternate way?

Let’s take a look at wearing shoes in the classroom. Why do we insist on this? Is it because this is what we are familiar with? This is what the neurotypical students do? What reason would we have for pushing shoes all day? Is it necessary for safety? No. Students put their shoes on to leave the classroom. They put their shoes on for the playground. But in the classroom, it is not necessary to wear shoes in order to be safe. Is it necessary for learning? No, and I would argue that it is actually counterproductive to learning. If you’ve ever had an unmet sensory need, you would know what I mean. It can be one of the most distressing and distracting experiences, causing pain and discomfort for the entire time that it is unmet. I want my students to learn. This means meeting their sensory needs.

Similarly, with large groups — why do we believe that students can only learn or learn best when seated together in a group at the table or the carpet? Can the student hear my instruction when they are pacing behind our group? Almost certainly, and possibly better than they can when seated. Can they add to the conversation or take their turn with the materials even though they had to leave for several minutes and then return?

I don’t insist on greetings and closings when entering and leaving the classroom, much less eye contact. I make sure that I greet each of my arriving students with warmth and affection in a way that works for their personalities and needs. But they don’t have to return that greeting. They don’t have to look me in the eye. They don’t have to say hello or good morning or good-bye. Once again — is it necessary for me to insist they greet us? Does it have to look a certain way? What purpose does that serve? Why do we do it? If the answer is, in any shape or form, “because that’s what neurotypical children do”, then we need to step back and ask ourselves if that’s enough for something to be necessary. It usually isn’t. Instead, we can create a classroom environment that allows for and recognizes a much wider display of “what something looks like”. We can recognize as valid and beautiful the many different forms there are to acknowledge someone’s presence (e.g., what a greeting is). We can recognize that some days, students may need time and space upon entering the room. We can recognize that people move through the world differently. It’s not only okay, but beautiful and essential.

It’s not that I don’t hold high expectations for my students. We engage in real reading, real work with letters, and real writing. We learn about numbers, geometry, and measurement. We explore patterns. We do science experiments. We create art. We participate in teacher-directed activities. We work really hard every single moment of the day on speaking and listening. We are safe with our bodies and our friends.

It’s that I recognize that our world is better when our world recognizes that validity and importance of different ways of being in the world. And that is why we do as well as we do.

 

This is part one in a series on selecting what’s important in our special education classrooms. Future posts will feature conversation on play, selecting target goals, and teaching social skills as a form of code-switching.

The Cost of “Normal”, or Why Acceptance Matters

I have debated writing this entry for a couple of weeks — for any number of reasons. It’s raw, deeply vulnerable. And in putting this rawness out into the world, I risk so much. I risk people telling me that I’m wrong, that I don’t know myself, that my lived experience doesn’t matter. It’s too high, too verbal, too wordy, too much this, or too much that. I risk the cuts that come a thousand times over in life, the ones that will surely come from people who think they know me… But have only known the masks I have worn early and often. I risk the anger of those who uphold stereotypes, who push ableism both subtle and obvious, who create little boxes that only further systems of oppression. 

And yet — it is an essential risk, a jump that I must take, this long and wordy essay, because I think there is also value here, for those open to receiving it. There has certainly been value to myself.

I have been different since… always. I was a toddler who read books, real books, who loved grammar and phonics rules more than toys, who recited lines from The Little Mermaid many times over, who needed my schedule to be exactly right, my 4:30pm He-Man and exactly 3 items for dinner. No more, no less, or it wasn’t dinner. The end. 

I became a child who cried for an entire day when she lost the school spelling bee, even though I was just six, because spelling, words, letters — they all mattered that much to me. I got in trouble for interrupting teachers, for correcting them, for not following the social rules of the classroom — on every. single. report. card. Grade 1 through 12. I ate little of the foods my family prepared, choking down a bite here or there, sticking mostly to deli meat and chicken nuggets, over and over. Not one single vegetable, not one, and not that many fruits then either. I remember crying if someone didn’t use separate knives for the peanut butter and jelly. I had to sit a certain way, in a certain seat, still do. Clothing bugged me. Hair bugged me. Shoes bugged me. Socks? That was NEVER going to happen. 

My reciprocal friendships were limited, one or two who always left when they found other friendships to be more satisfying. I had exactly one birthday party with multiple peers of my age in elementary school. And it ended with me on the outside, always on the outside, as they played truth & dare, as they pranked me, as they mocked me, at my own party. I don’t think I had a friendship last more than a couple months, maybe a year, until late middle school. I rarely went to others’ houses, not even family. I wanted to be at home, where things were comfortable and familiar and routine. My home, my grandparents’ home, and that was it. I remember attempting to stay at my great grandparents and having to be picked up because I could not sobbing over my need to be. at. home. 

I remember these instructions, over, and over, and over: stop spinning, stop rocking, stop making those random noises… stop incessant interrupting… stop the endless talking about my interests… dress differently, more “together”, more “girl”. Remember to shower. Remember to brush your teeth. Be more social. Do more things. One of my closer friends at the time was certain that there was something wrong with me, in the way that I needed to line things up, the way I needed things to be the same, to the point where she even said something to my family. Teachers, too. Counselors. Many over the years. But it was clear that I was not ADHD, the most common childhood diagnosis at the time. And so, I continued on, no diagnosis, just “quirky” and “odd” and “weird” — depending on who was doing the labeling.

But I am not angry at my family, my friends, my teachers. They did the best they could in a time when people didn’t understand. Indeed, they did better than most, in allowing me my endless escape into novels, buying more items for my Titanic collections, and encouraging all of the alone time in the woods and trees that I needed. They recorded my favorite shows on VHS so that I could watch them over and over. They helped me find the exact soft pants that I needed and bought multiple pairs. But these things are not enough, not when an entire culture — your entire school — is telling you constantly that you are weird, you are odd, you are not good enough. 

And so, like many others, I learned to fake it. I faked it hard in high school. Instead of being the girl who always reads and stays at home, I was the girl that was involved in everything. I was the girl who talked and talked to everyone. I studied other people. I talked myself through all the rules that my family uttered, through all the things I saw other people do. I reminded myself to look at people, to say hello to people, to laugh when everyone else is laughing. I wore the clothes that my mom picked out for me for as many days as I could (before returning to literal pajama pants and flip-flops). I pushed myself to go to youth groups, to go to football games, to sign up join do do do! 

And all of that fitting in, all of that masking — it came at a cost. A deep and treacherous cost. There is a depth of lonely aching, of being certain that there is something innately wrong with you. That you must be selfish, self-centered, egotistical, to not be able to understand all of these rules. That there is something wrong with your need to rock, to stim, to make noises. That you must be unlovable. There is an exhaustion that cuts to the very bones of your being when your day is spent pretending to be someone that you are not. It is an exhaustion that takes everything, everything from you, and leaves nothing but gaping holes. It is a cost that left me laying on the bathroom floor, too many nights to count, with tears streaming down my face. Silent, racking sobs. Gasping for air, gasping for life. I remember sitting there on that cold tile floor and wishing that I could die. Considering how I could die. Wondering what would happen if I were to die. Thinking that, whatever it was, it would be okay, because at least I wouldn’t be alive. And it was an entirely preventable depression, one that I’ve only recently learned to connect to all that painful masking. 

Because there are only two other times in my life that I felt that incredibly low. The second was in my early 20’s, when I joined a staff at a school that was filled with similar aged young women. Except I don’t have many shared interests with a neurotypical same-age woman, as if that wasn’t clear already. I didn’t want to go out for drinks, or dinner, or any of those things. I just wanted to talk about teaching. I wanted to belong, but I wanted to belong as me. And I didn’t. I couldn’t. My passion for the last 13 years has been my students, and everything classroom. I collect information about teaching the way others collect subway maps or Lego models; I wanted to talk about that information always. It was my everything. And I was mocked. I was told, again, that I only ever want to talk about one thing. So I tried to be different… To hide who I am. To go get a coffee. To small talk and chit-chat and have lunch with my colleagues. And instead of feeling as if I belonged, I felt misery. That aching, haunting feeling swept back into my life. 

Again, that third time — I took a job as a coordinator, thinking that this was a job where I was supposed to talk about my passion with others. Guess what? It’s not. Coordinating is all about social skills, small talk, and “leadership skills” that get staff buy-in. I fell apart. Every day, all of my spoons were used up by noon, between phone calls and favors and meetings and persuasion and trying so hard to be “normal” and social and follow all the rules that make good leaders.  I don’t think my husband had ever fully seen me that way, so lonely and lost. I hope that I never enter that place again. 

You may be wondering — how in the world does this relate to being a teaching unicorn?

Because you must understand the cost. You must understand that the cost of masking, of faking it, of being someone other than you are — the cost is nothing less than laying on that floor and wanting to die. It is nothing less than feeling as if you will never belong, as if you will never be loved, as if you are worth less than dirt. I’ve lived through trauma, through physical abuse, and none of that abuse brought me as low as those months of masking did. Every time. It is trauma. It is a trauma that cuts to the very essence of someone’s being. 

You must understand what you are asking your students when you ask them to be neurotypical, whether their neurodiversity stems from autism, intellectual disability, or mental illness.

You are asking them to give up everything.
To leave behind who they are. 

To leave behind everything that makes them who they are. 

To become empty in pursuit of “normal”.

It is never worth the cost. It doesn’t matter how great they get at masking, whether they pull off a 4.0 GPA and a smile while doing it. They will be dying on the inside. 

This is why the world must change, not our students, not ourselves. Because we are all worth of love and belonging. But we are worthy of that belonging right now, as we are. Every day, we make a choice. Will our teaching uphold systems of oppression, or will it teach our students that they belong? Will the subtle things we say — the things we think we say with love — support them or cut them? The goals that we select? The curriculum we use? The ways we teach? We are teaching so much more than a skill. We promote acceptance or we promote trauma. It is that simple. 

I know I’ve made mistakes. I’ve made the wrong choices. I am sure that I have accidentally bought that pain to my students over the last decade, and I mourn for any and every time I may have. I use that mourning to do better. Because I never, ever want to be the reason that a child cries alone on the bathroom floor. 

P.S. I do feel like I should add a little note of gratitude to one particular high school friend, who knows who she is, one of my only lasting friends, who always accepted me and my Harry Potter obsession exactly as I am, who always will.