We Quit ABA: What We Do Instead

ball pit filled with white balls with 2 black and pink sneakers poking out

This specific post is about what we do as a family at home with my children. I am writing because I have seen an increasing pressure on families. I have even seen posts advising ABA therapists to use guilt on selling their services: “what will you regret on your death bed?”

We’ve been through some rocky time periods where we had to confront the fact that tomorrow is not guaranteed. Never once did we worry about whether we had done more ABA. We focused on the laughter, the hugs, the moments of laying in bed and singing “Mr Worldwide” or “I was following, I was following…”

Some of the things will apply universally, across environments, and some may not. Home is different from school. We’re all better off when we acknowledge that. I had to really work to let go of the idea that I needed to be “working on something” all the time. This idea is actually built on cultural ableism: if we do enough, if we continue therapy 24/7, if we work hard enough, our child will get closer to the non-disabled. She doesn’t need me to be her therapist. She doesn’t need me to structure every moment of her day. She doesn’t need to be anyone except herself. She needs her mom. She needs a childhood.

With that framework in mind, here are some of the ways that we have selected to support our children better at home — without ABA.

We start with acceptance. We accept, fully. We accept non-speaking. We accept stimming. We accept passions and routines and repetition. We accept sensory needs and movement needs and an eternal love for Pitbull. This has to come first. Read #actuallyautistic writings. Watch videos unpacking ableism. See a therapist. Phone a friend. Spend time swinging on the playground, enjoying your child as they spin and twirl and chase bubbles. Do what you need to get to acceptance — and don’t write about it on Facebook. Imagine your best friend, your mom, your partner writing about you the way that the world so often writes about autistic children — and without your consent. You wouldn’t like it. It’s dehumanizing and hurtful. Don’t do it to them.

Don’t freak about your child’s timing. Not now does not mean not ever. Allow your child to find their own way. There’s this incredible push to “get kids ready” for adulthood, and it’s striking earlier and earlier. Succumbing to that pressure is a surefire way to spike everyone’s anxiety. It’s why families resort to sticker charts for sleeping on your own, or intensive potty training programs. Doing something at 7, 12, or even 16, doesn’t mean they will be doing it when they are 26 or 36 or 70. Not now does not mean never (and, perhaps a blog for another time, never isn’t the end of the world).

We problem solve with our children regarding “challenging behavior”. A child who is not doing well is a child for whom something has gone wrong. They may be experiencing a health issue that they’re having difficulty sharing. They may be struggling due to inappropriate expectations, a lack of accommodations, or a need for scaffolding. They may simply need some extra connection and time with people who care about them and accept them. We work with our children to uncover the need and develop a solution that meets their needs and ours. For example, we stay with our son until he falls asleep each night. If he wakes up in the middle of the night, we do it again. It meets his need for accompaniment and our need to have our own bedroom space.

We create environments for success. If my child struggles with unstructured vacation time, we bring picture cards and create a schedule for the day. If my child is struggling with long trips to the grocery store, we don’t do long trips to the grocery store. If my child wants to go to the zoo but is struggling with impulsive running away, then we find ways to support their safety (e.g., strollers, kinderpack, wagons, etc). If my child is having difficulty with being safe in their room, then everything in their room is soft and safe and comforting. Our goal is not to do things my way, the “typical” way, the way everyone else does it… Our goal is for our child to be successful. So we change and adapt and accommodate to create that success.

We use restorative practices instead of punishment. We all make mistakes. We act impulsively. We hurt people we love. Teaching relationship repair is one of the most important things I’ve taught my children. When something goes wrong, we brainstorm how to make it right. For example, my son once helped a neighbor mulch their yard in the Spring after breaking something in their yard earlier. It wasn’t a punishment. My son loves gardening and mulching; he loves spending time in the yard with his dad. But it was about making things right with someone we hurt. We could likely all be a little better about that.

We immerse ourselves in augmentative & alternative communication (AAC). We talk AAC. We use AAC to talk with our daughter. We use AAC to talk about what we are doing. We use AAC all day every day. And we see AAC (and all forms of communication) as invaluable. It is as worthy and awesome and beautiful and everything as any spoken word. This can be a huge cultural shift in a world that prizes talking — talking fast, talking loud, talking often. But the thing is — it’s never really about speech. It’s about our feelings, our thoughts, our needs… About connection. And there are many, many, many ways to communicate — with even more ways to connect. Cherish them all.

We love routine and familiarity and comfort. We’re kind of homebodies. We love movie nights and binge-watching Duck Tales. We go to the same stores. We eat the same dinners. We go on the same vacations. We don’t stress about screen time. You may be wondering why this matters, as far as “what we do instead of ABA”. It’s all about removing stress and upping acceptance. There is an unbelievabe amount of stress placed on our autistic children. They are expected to get by in a world that does very, very little to accommodate. All too often, this extends to our family life. We used to be a hiking family, so we bring our kids who are overwhelmed by mountain climbing. Our family expects us at a reunion, so we go, knowing it’s too loud too busy too much. But I refuse to allow my family life to be a source of stress. We adapt. It’s not loss. It’s opportunity. We find new ways to explore our passions, new interests to explore together, new ways to connect that allow us all to be ourselves, fully.

We seek out physicians & therapists who presume competence. When we’ve decided to seek support from professionals, we seek professionals who believe our children are capable. Not capable “within a certain limit”, but capable. Period. We set goals that work on things our children value. We seek doctors who believe my daughter’s “yes” when she says something is painful. We look for therapists who avoid hand-over-hand manipulation and always ask consent. We leave therapists who limit her words or talk negatively about him in front of him. Don’t be afraid to walk away when a therapy doesn’t align with your family values.

We teach. We preview skills before they will be needed. What will be expected and when? For example, we look at maps together before they are studied in social studies. We talk about how long we will have to wait to get through security before we leave home. We model and demonstrate ways to do things. We might show our son how to belly breathe, model new words that have been added to my daughter’s communication system, or bring our children into the process of making to do lists or figuring out what we need at the grocery store. We model these skills again and again, without frustration. We encourage exploration and experimentation, with all the mistakes and problem-solving that comes with. This means that my son can hammer big sticks or plant an avocado seed to see what happens. My daughter can bang on the screen of her iPad as she figures out where and how to get to her favorite apps. We scaffold and accommodate all along the way — what supports can we put in place to allow our children to be more successful? Notice that I don’t say “more independent”. We overly prize independence, when autonomous is more valuable.

We do hard things — together. Sometimes, we have to do hard things. We have to go to the doctor and get a shot. We have to clean our rooms. We have to figure out whether we have enough money when math is hard. We have to deal with the frustrations of life — the ride that was shut down, the brother that makes bothersome noises, the memorization of some key science terms… So we do it together. Even if it seems small to us, it is big to their bodies. We empathize. We co-regulate. And we do the hard things — together.

And, oh, most of all, more than anything, we celebrate. There’s so much joy. There are so many amazing moments that we can have with our children. Different is not less. It is never less. We splash in the pool, while singing “Go, Diego, Go” on repeat for 30 minutes. We watch the same Curious George movie, because the light in my son’s eyes when George dresses up as No Noggin is everything. We joke around with my daughter, whose current favorite AAC phrase is “Got ya!” Oh, we have so, SO much fun. So much freedom. So much flexibility. And I’m so grateful for it all.

Why We Quit ABA, Part 2

For more stories, including autistic voices that must be heard, check here.

You can read part one of our story here.

When we quit ABA, it wasn’t just my daughter that quit ABA. I am a special education teacher in my fifteenth year of supporting autistic individuals. When you serve autistic students, there is a certain amount of pressure to pursue a BCBA. It’s not always formal pressure, though some districts are increasingly requiring it. It can come informally, through meetings where BCBAs discount your professional opinion or through the knowledge that parents in your communities are seeking out those initials. 

Because of that pressure, I started (and stopped) the coursework towards my BCBA twice. The first time, I made it through one class. I am not even sure if I took the final exam, or if I just took the W. The second time, I made it through three. I wanted to know the terms and the practices and the terminology that are being quoted as the best thing for my daughter and my students. I wanted to read the research for myself. 

I still quit. Two different programs. Permanently.

There are tools that are used within ABA that many really good teachers use — and probably used long before Skinner ever came along. For example, breaking things down into smaller pieces can be really helpful in determining where a learning breakdown is happening. Or “shaping”, where we celebrate kids’ good attempts at something long before they are perfect.

But I found that it was impossible to separate these tools from the culture. It was impossible to separate task analysis from a heavy reliance on physical prompting. It was impossible to separate shaping from an emphasis on verbal communication. It was impossible to ignore the research that included forced feeding programs, elimination of vocal stims, or provision of limited communication systems to students. It was heart-wrenching to be in classes with professors and people who likely thought the JRC was a good thing. It was impossible to ever choose presence with students over quantitative data. It was impossible to ignore the compliance-oriented research and strategies.

And it is pervasive. This harmful, harmful idea that autistic students cannot learn outside of this one way is pervasive.There is plenty of behavior modification talk in special education programs. There are still plenty of special education textbooks that write about discrete trial as the way to teach literacyThis pervasiveness is why I write — not just about quitting, but everything I write. To break down these harmful ways of thinking and teaching. To do better.

Three semesters of coursework on ABA specifically with autistic students, and how many times did I read about autism from the words of autistic people? Zero.

Three semesters and how much did we learn about AAC? One week, and limited to PECS.

Three semesters and how much did we talk about accommodating sensory needs? Zero.

These things are important to me. These things are what make me the teacher I am today. These are the things that I want my child’s teachers to know — what her experience of the world is like, how to support her communication, how to meet her sensory needs. These things are what make my classroom successful and my students happy to be there. 

This is why I write so much about the culture of our classrooms, because that’s what comes first. We need to know who we are as teachers, who we want to be.

I want to be a teacher who explores concepts with my students. I want to be a teacher that expands their schema and understanding of the world. I want them to learn about mud puddles and the way friction slows a ball going down a ramp. I want to immerse them in literature and letters and writing. I want my students to build deep understandings of number sense. I want their vocabulary to be built through rich sensory experiences, not time at the table, not pictures. I want them to fall in love with learning. 

These things are not easily measured. I won’t be able to create a list of 1,000 pictures that my students can name when asked (and I’m okay with that). These things are not taught by reading sight words or repeating math facts until we reach a set level of fluency. But these are the things I want to spend my time and money studying. I want to study how I can be a better communication partner to my students. I want to study what a literacy block can look like for my emergent literacy students, what accommodations and strategies will help them when they enter elementary school. I want to experiment with what sinks, what floats, and why we think that happens. I want to make messes. I want my time to be so fully immersed in being with my students, not in sitting behind a desk and graphing. 

I want to be a teacher who gives my students an education

It’s not easy to quit ABA. I mean, it’s super easy to quit in that my classes were against everything I stand for and frequently made me shake my fist at the sky. But it’s not easy to take the leap against something the whole world pushes. There is a fear that one day, I will no longer be allowed to teach my students. There is a fear that families will think our classroom is not good enough. 

I have thought long and hard about how I would respond to this fear. I believe in my students. I believe they are smart and capable and funny and talented. I believe that they have the same right to a full, well-rounded education as any other person that walks through the doors of school. Because, I promise you, if you give us the chance, you will not regret it. 

Why We Quit ABA, Pt. 1

I’ve mulled over writing this post for a while. There are so many voices out there who have better spoken about the challenges of ABA therapy. The voices that should be the loudest are #actuallyautistic individuals who have lived through ABA therapy and are begging us to listen.

They aren’t being heard enough. So I write, in hopes of bolstering and supporting their words. I write at the unique position of being a professional who has been pressured to pursue my BCBA, and as a mom to a child who has been pressured to enroll her in ABA.

(And go read from this list. Seriously. So much important stuff.)

I’ll start with my daughter’s story. She has unfortunately experienced ABA therapy twice in her life, and it is a deep regret. They are my mistakes, ones I own and can never fully make up for, though I try. Her first experience was in a private school placement. We had found out that she had not been safe in school. We advocated fiercely for a transfer within the public school system, but were rapidly running out of time and options. We chose the private school that, at the time, was least committed to doing things the “ABA way” with her. Or so it seemed. We ended up fighting to bring her back to public school. (Happy ending, at least: she is now with a teacher that is about as far from ABA as you can get… and having the best education she’s ever received.)

Her second experience was when she was 12 — and in pain. She was in so much pain and expressed her distress through her actions. I am not going to get into all of that, because it’s her story to tell. My story is about how we went to multiple doctors at multiple places. The recommendation, again and again, was ABA. I knew in my heart that ABA was not right for us. We had lived this before. We saw that it was not a match. We knew knew ABA would not solve this problem. I knew that she was in pain and that we needed to find the answer. After over a year of searching, it felt like doctors would not even look until we enrolled her in ABA therapy. We reluctantly enrolled her after asking for numerous recommendations for an agency that would focus on her communication device, participating in her daily life routines, and respond to our boundaries and feedback. We honestly hoped that we were going to get one of those places that doesn’t really do ABA but bills as ABA**. Except we didn’t. (Another happy ending: we found an amazing medical team, got appropriate treatment, and know they will always listen to her pain.)

We lasted not even 2 months before quitting.

We rarely saw the BCBA. When you go to therapy for anxiety, you see the licensed counselor. They provide direct services. When you’re in a special education classroom, the special education teacher is in that room supervising every single day. They know your child. But within ABA, the person that designs the instruction, makes the rules, determines what and how to teach? They may see your child less than 5% of their service hours. When she received in-home therapy, the BCBA met her one time. Once! In six weeks! That is a travesty and it happens way more frequently than most agencies are willing to admit. Instead, the person serving her may have little to no experience in education, psychology, learning, disability studies, or anything related. They may receive minimal training and support. And yet, here they are, getting all the funding and all the attention.

ABA is built on the prerequisite model. ABA therapy is built around breaking big tasks into smaller pieces. This alone would not be problematic. Breaking things down can be helpful. The problem lies in what we break down, how we teach it, and how we move on from it. For too many of the children in my life, “how we move on” has meant never. Arbitrary and meaningless “mastery criterion” kept my daughter listed as a “pre-learner”. The insistence on keeping a list of words that can be performed on command for 80% of opportunities across 3 people and 3 settings prevents students with apraxia, anxiety, or just a desire for communicative autonomy from having their voices heard. The inability to break down some concepts into easily measured discrete pieces prevents some children from ever accessing them (e.g., non-speaking students and true literacy instruction). ABA therapy was unwilling to address any of the goals that we had for our daughter, because they felt they had too many prerequisites to teach first. Prerequisites that we told them she already had. Prerequisites that were sometimes completely disconnected.

New ABA is old ABA. Knowing what we know, we set a lot of rules around in-home ABA therapy and supervised every session. We emphasized in every phone call that our focus as on meaningul activities connected to every day life and expanding my daughter’s use of her talker through modeling. The moment I broke was when I sat and watched an ABA therapist say to my daughter, “Hi Jane, what’s your name?” and then prompt her to say “Jane” on her talker. She had literally just said her name. They proceeded to repeat this several times in a row. I interrupted it before it could go on any longer. This moment just epitomizes everything for me. It showcases exactly what the therapists, BCBA, and system think of my daughter. To say her name to her face and then ask her what her name is… To ask that question in repetition… I offered advice, such as talking to my daughter about why being able to answer her name is important, talking to her about practicing & role play, and so on… Rather than take any of that advice, they just stopped working on anything with her device (see below, re: ABA is the only way.)

ABA still wants to control what my daughter loves. The moment that my husband broke was when they asked us if we could take my daughter’s iPad and iPod away for a hour before they came, so that these tools would be more powerful for them. We refused. They pushed. We refused. For starters, no, I am not going to take things my daughter loves away from her so that you can use them to manipulate her. Second, my daughter has physical disabilities in addition to being autistic. Taking away her iPad and iPod mean taking away her leisure activities, ones that she adores partially because it’s one of the few things she can do all by herslef. Finally, if we have to remove everything a kid loves in order to get them to love us, what does it say about us? What does it say about our actions? And what kind of professional are we if we ignore this information? Her current team certainly doesn’t. She listens to music all day, with her only restraint being volume and school-friendly lyrics — and still does all of her work.

The ABA way is “the only way”. Trying to get any BCBA or ABA therapist in this child’s life to ever listen to us about AAC, vision, or motor needs has been nearly impossible. Bringing in other professionals has rarely made a difference. We’ve met ONE BCBA who truly works as part of a team. Why is this so hard for them? How has ABA taken control over every other field, from feeding to speech to anxiety to riding a bicycle? At the time, I had over a decade of experience in supporting children like my daughter. I had all the experience of being her mom and knowing her deeply that they did not have. Yet I never felt so belittled and unimportant as when they pressed the need for “parent training” — while never actually defining what this meant.

They are always there. This was my husband’s ultimate complaint. When was my daughter supposed to be able to have a life? We asked for 2-3 days of 2 hours, at most. They wanted to provide over 20 hours. They wanted her to be pulled from school to provide that 20 hours. They wanted to somehow go to her school and do more hours there, interrupting her education. They always seem to want more. Their answer to “this is not working” re: a plan or strategy — let’s do it MORE. My daughter was a 12 year old girl. She deserved more in her life than ABA therapy. She deserved swimming in the pool and chilling in her room watching YouTube and spending time with her family. She deserved a summer.

Work as an act of love, or work as an act of work. We never really connected to our ABA therapists. I know that some families really connect to the people in their home, but ours always felt like they were coming to work. I can’t understand it. I go to school every day as a teacher with fire and passion in my heart for the little ones I serve. I delight in them. I adore all their habits and quirks and big personalities. I am the first one to celebrate every success, your child’s biggest non-family cheerleader. Maybe that’s unfair, but if you’re spending 20+ hours with my daughter — it needs to be more than work.

Turnover, cancellations, and the like. Turnover in the field is high. We stayed with in home ABA therapy for six weeks. We had 2 therapists and 2 BCBAs in that time period. We were in private school for 2 years. We had 5 BCBAs, a huge chunk of time with no BCBA, and who knows how many number of instructional assistants… And cancellations by therapists for in-home therapy were high.

And they still didn’t help with “behavior”. After all of that, they didn’t even do what they came for. Her private school didn’t help problem solve her distress behaviors. They didn’t disappear until she was back in public school. Her in-home therapy team was worthless at helping to collect data to analyze for patterns in what could be triggering the distress, the data that would have helped us advocate for her with her medical team. They took frequency. They wrote down what happened directly before or after. But that’s not enough. We needed to look at sleep, eating / what she ate, weather, seizure activity, symptoms, and missing supports. We needed to model pain-related vocabulary, protesting, and complaining. 7 BCBAs in her life and not a single one did these things. Not a single one.

It would be easier not to write about this, if only over the shame I feel when I think of those choices. But it needs to be shared. I’ve been stuck in a system that feels as if there is nowhere to turn. My daughter and I have both yelled and screamed and begged to be heard, while being completely shut down. We have been bullied. (Teachers, please don’t do this to your families. Respect the decisions they make for their child’s life outside of school.) If we were able to do it again, we would home school. We would travel as far as needed to find the doctor that listens. But not everyone has that luxury. A single parent working multiple jobs doesn’t. A parent without health insurance doesn’t.

That’s why we have to continue to share. The current system has to change. The way that insurance and professionals gatekeep and dictate what is right for their clients, instead of their clients deciding what is right? That has to change. There are pitiful supports for both disabled individuals and their families, across the board. There are few doctors who listen, few school systems that include, and way too few funding for communication systems, adaptive equipment, retrofitting spaces for physical or sensory needs, personal care attendants, classroom staff supports, and so on… There is so much support and money for ABA therapy, while everything else is left behind.

This won’t change just by switching to “nice ABA”. It is only going to change when we overthrow the ableist foundation on which it’s all built — that people become more worthy as they become less visibly disabled.

People are worthy of the supports they choose now. People are worthy of accessible communities now. People are worthy of quality & affordable healthcare now. People are worthy of being seen — not just as people to support, but as people with thoughts, feelings, talents, and skills that are important to and for the world. Now. My daughter deserves real therapy when she needs it, real education always, and real support from people who love and appreciate her. Now.

And that is why we quit ABA. Forever.

Part 2 documenting my own story will be posted later this week. I’ll also share what we do at home instead. What I write about every day is what I do at school instead 🙂

** I know realize the problems inherent to people practicing something not ABA but billing as ABA. While it’s great that a child can access supports that are helping them, it makes it more difficult for others to differentiate between harmful and not harmful. The non-ABA lends credence to the ABA, as people hope that they can enroll and get basically a play therapist (as we did). It also makes it more difficult to advocate for insurance and other support networks to better fund non-ABA supports.

How We Do It: Visual Schedules

yellow clipboard with velcro picture symbols showing a student's day (circle time, art, tech, eat)

I tend to write about the philosophy behind my teaching and the culture more than the practical. This is because nothing else matters until our classroom cultures shift. Visual schedules are a fantastic example of what I mean.

There are plenty of people who use visual schedules as a compliance system. This is on your schedule. You must do this. Or they use visual schedules because someone once said they should, but they sort of just sit around and have little meaning for the students using them. If that’s how they are being used, then it’s not a student accommodation. It’s a teacher tool.

We use visual schedules to increase predictability, visual supports for conversation about our day, and to assist students to know where they are going and when they are going there. They are a support system. I understand this deeply because I need a schedule.

How do we do this?

yellow folder on top of a yellow clipboard

We design the schedule to be easily accessed.

I often see schedules on walls. I’ve made this mistake in the past. But it’s not very useful on a wall if you’re in the cafeteria, on the playground, or even on the other side of the room. Asking a student to leave a preferred activity to go across the room to check their schedule to come back across the room seems like a lot of response effort for a time that may already be challenging. Transitioning, shifting attention, and now moving too? We keep our schedules on our clipboards. The front has a folder for data, notes, or individual student items. The back is the schedule. We also bring the schedule to our students. Older students could carry their schedules with them by placing them in their binders or backpacks.

We design the schedule for understanding.

We currently use primarily picture symbols, but not only picture symbols. We have used songs, objects, photographs, and written text, all dependent on the child’s needs. We’ve also mixed them all up — maybe a student uses a picture schedule for all of their work activities, but uses a spoon to transition to meal time. We currently don’t use times on our schedule as we are in preschool but I’ve used them with older students. It’s not about the tool. It’s about matching the tool to the student needs. Ask your students: will this lead to more or less understanding? More or less frustration? If they cannot tell you with speech, watch their nonverbal language. We always want to decrease frustration.

We use visual systems to support their use for transitions.

image of a filing cabinet with an "art" picture attached to the side, with 8 velcro dots below

One thing that has invariably helps my students when learning routines and schedules is to have a match in another location. They don’t just have a random picture of a table that means “work time”. There is a matching picture on the actual work time table as well. If we’re using a space that serves multiple purposes, that picture is attached by velcro. I don’t like spaces to have multiple visible pictures showing; it gets confusing. We know what the schedule says because we can read text. If our students are not yet able to read, how do we make sure they understand? This matching system helps so much.

We refer to the schedule throughout the day.

The schedule is not just a decoration or a transition cue. It’s something we talk about throughout the day. We talk about changes to the schedule in our morning meetings. When students go to their backpacks during the day, we show them their schedule to help them know when we go home. If a student asks for a snack or iPad or some other item that we cannot access right now, we use the schedule to tell them when they can have it.

We don’t care about compliance.

Repeat after me: the schedule is not about compliance. It is about understanding. Not compliance. Not compliance. It has to be said so many times. One of our assistants is brilliant at being about cooperation instead of compliance, especially with schedules. When a student puts a picture schedule piece in the wrong place or on the floor, she says, “That’s one place you could try. But let me show you where I would put it.” If a student just won’t take their picture symbol to transition, then we say, “Oh I’d love to help you. Let me show you where we are going.” If a student needs to finish their current activity, because they’re mid-alphabet, we let them finish their current activity. If a student runs across the room to the next activity, ignoring their schedule, that’s fine. If they are already sitting and waiting at the table, that’s fine too. Because it’s not about “checking the schedule”. It’s about feeling safe, knowing what’s happening in your day, and having a way to help you get from place to place. That’s why we use them. That’s why we adapt them. That’s why they work.

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.

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.