We have AAC: now what?

image of an iPad screen with Speak for Yourself, and a list of animals in the message bar: banana, cookie, cat, dog...

Access to AAC is a fundamental human right, but it’s one that tends to be forgotten and overlooked in many spaces still today. October is AAC awareness month, which means lots of people are hearing about AAC or gaining access for the first time. The first few steps can feel overwhelming to families and professionals new to this journey. There is a fear about “doing it right” and “doing it enough”. I promise that you can do it. You can do it. You must do it. And it will be worth every step. 

Get excited. It can be really easy for AAC to be seen as a chore or “another thing to do”. It can seem like that to families, to professionals, and to AAC users themselves — especially when drilling methods are used to teach its use. It’s really important for all of us that we don’t associate AAC with “work”. We need to stop seeing on AAC as a way to drill our students on all the things they already have a way to say. We need to see AAC as a tool that allows our students to express all the other things they have to say. This isn’t to say that learning a new language isn’t hard (it is) or that magic moments happen every single day. Learning to read and to write and to speak a new language — all of these things can be challenging at times. But they are all things we see as worth it, because of the long-term benefits. We find the joy in all of the moments along the way. The first time our child spells a word by themselves, the first time they “read” their favorite memorized picture book, the first novel we pick out. AAC is like that. Sometimes easy, sometimes hard, and always worth it. 

Make sure the system is available. This is the first thing I always tell families or new teachers to do. Spend the first few weeks getting into the habit of always having the system. Problem-solve what you need to make it happen, whether it’s straps, a Post-it note on the door, a different case, etc. Assign staff members who get systems out of backpacks. Figure out a plan and space for charging if it’s high-tech. This shows your student that you truly value their AAC system, that you believe in its importance, and that you want to hear what they have to say. It’s also really hard to model on or use an AAC system if it’s not there. 

Assume intentionality. Please, please, please, please, whatever you do, please never say “I don’t think they meant it” in front of a student. I wish you wouldn’t even think it, but please don’t say it. Always respond as if your student meant it. There is no harm in this assumption, but there is so much harm in telling kids’ that you do not believe their words. If you don’t understand, be honest. Ask. “I don’t understand what you mean, can you try telling me another way?” or “Hmm, I have to think about that, can you tell me more?” These are not hard things to say. 

Encourage exploration. Treat a talker like a voice. Do not take it away. Do not remove it or block it. Do not put it on the teacher’s desk to be used later or when it’s appropriate. You cannot do this with speech, and so you cannot do this with a talker. Exploration is wonderful. Exploration is learning. Exploration is ownership. There’s a million reasons for children to babble and stim and enjoy their systems. They could be learning the locations of words — how else will they find them, especially if they are not yet reading and spelling. They could be playing with sound and exploring words and language, just as young ones do when first learning how their mouths can make different shapes and noises. They could be engaging in self-talk. They could just be having fun with sound, and that’s fine too. They have a right to autonomy with their AAC systems, the same autonomy that they would have with their speech, the same autonomy they should have with their bodies. 

Familiarize yourself with the language system. Adults often complain about not being able to find words or finding systems not intuitive. I’ve found the hands-down best solution is to explore the system. Find a picture book and comment on all of the pages — with the AAC system. Watch a favorite TV show or movie, one where you know all the best parts already, and do the same. Think about words you might want to use on a daily basis — search for them. It truly comes down to practice. There’s a reason so many adults tend to prefer the system they know the best… Once you’re familiar with it, it becomes easy. If you don’t have access to the system itself, see if you can get access to a low-tech version, watch videos of people using it online… Give yourself time and grace to learn something new, but keep learning it. 

Model, model, model. And then — start modeling. Modeling is a fancy word for saying “talk with the talker”. Don’t overthink it. When you talk, highlight one or two of the words you say on the talker. If you’re wondering what your child could be thinking, highlight one or two possibilities on the talker (“I wonder if you’re tired? Sad?”) Start with modeling just a couple words or modeling at meals or spending some 1:1 time with your student’s AAC system and their favorite toy. Yes, you can start that small. Yes, you can start by modeling 3-4 words as the opportunity arises during the day. Yes, you can start modeling by talking all about food and drink and favorite TV shows, or other likes or dislikes at the dinner table. Just don’t make it work for them or for you. Don’t make it “say this right now”. Think of your goal less about “doing it right” and more about “getting comfortable with AAC”. I’ve seen fear of being wrong all too often lead to no modeling. And I promise some modeling, modeling with mistakes, modeling slowly, all of it is better than no modeling. 

Yes, there can be more to AAC. Yes, there are other things to think about, amount of modeling and vocabulary and recasting and probably some other fancy terms. I’m not denying that. But it all starts here. Don’t overwhelm yourself with dozens of articles and stress about doing it right. This is the foundation. This is what everything else is built upon. Make this strong. Become so reliable about having the device that you feel naked the one time you forget it for 5 minutes. Get so comfortable with responding and modeling with AAC that your child or student never, never, not for one second, ever doubts how important you see their system and how valued you see their words. Everything else comes later. 

All communication counts.

image of an iPad screen with blurry picture symbols and a message that reads: don't like Horrible Horrible!
my daughter’s request for cake, and her response when we told her not now: “don’t like Horrible! Horrible!”

All communication counts.

All of it.

When families ask for advice, they are too often told to ignore their child’s communicative attempts in favor of oral speech. Oral speech is seen as the be all, end all, and the ends justify the means to get there.

If a child hands you a favorite toy, you’re supposed to pretend to misunderstand until some vocalization is made. 

If a child points to an iPad on the counter and looks at you, then you are told to prompt him to say “iPad”. Until he says “iPad”, you are supposed to ignore his communication.

If a child says “cookie”, then you are supposed to wait for an “I want cookie, please” (because, you know, that’s how we all request things and talk all day log). 

It’s not fair. It’s also pretty obvious why our students stop communicating with us. We’re not listening when they do.

What would you say if your partner asked, “Do you want a sandwich?” Would it be yes, yeah, sure, nope? What would do if your partner ignored you until you put it into a complete sentence? What if the colleague down the hall ignored your friendly wave and smile, because it wasn’t a verbal hello? Or, worse, what if your best friend responded to your smile by saying, “Say hello”?

We all communicate in many different ways. We gesture. We hand things over. We nod, shake our heads, grimace, use slang, text, email, and speak in person. Why is this multimodal communication okay for neurotypical children, but not for our students with disabilities? Why are we so afraid of supporting all of their communication?

We need to examine these fears. What do we think will happen if we accept pointing, hand leading, vocalizing, facial expressions, and all the other forms of communication? What do we fear? Because, I promise, everyone is always going to use the easiest way for them to communicate at any time. No one thinks, “I can easily access my speech right now, but I’m going to use this slower method of the talker.” Everyone uses what is the most efficient way to share their message. 

We need to examine our hopes. What is it that we really want from our students? From our children? We want to know their thoughts, their feelings, their dreams and desires. We want to know what makes them laugh, what frustrates them, what worries keep them up at night. We want to share moments of joy. We want to hear their messages. 

This doesn’t have to happen through speech. Communication happens every day. Most of the time we simply need to open our eyes and ears to hear it. That’s what we do in our classroom. We listen for our students’ current communication, validate it, respond to it, value it. We also model and expand on the tools that a student has, so that they always have multiple ways to share their message. They determine what the message is, when they want to share it, and how they want to share it.

If a child hands their favorite toy to me, I might comment on what it is with speech. I might model requesting “help” on the talker. I might ask with pictures — “are you asking me to PLAY with you or to FIX this?”

If they point to the iPad on the counter, I say, “Yes, you want the iPad! Let’s get the iPad!” I might use the talker to model iPad, want, or get. I might sign help. I do this while also responding to the request that has been made. I don’t model these words because their point was invalid. Their communication was authentic and perfect in that moment. I model them so that they have experience with other ways to tell me what they need, when perhaps the iPad is not in sight.

If they say “cookie”, I might expand on that. I might say, “Cookies are delicious” or “you have a chocolate cookie”. I might make a joke about Cookie Monster or model “hungry” and “need more” on the talker. 

None of those scenarios are contingent on the child doing anything else. They’ve shared their message. We are just continuing to model and support all kinds of language and all the different ways we can share our message. And sometimes, we might not do any of those because they clearly don’t want to talk about that right now. That’s fine, too.

Yes, I am a teacher. Yes, we focus on communication. Yes, we always immerse our students in aided language simulation. And, yes, we see great gains without the pressure, without the prioritization of speech over all other forms. We create opportunities for communication to happen. We wait without filling in the silence, so that our students have time to gather their thoughts and orient their bodies. Getting their bodies — whether it’s oral muscles or hand muscles or something else — to do what they want can be a challenge in and of itself. We create time and space for that to happen. But if it doesn’t happen, if leading me by hand to a favorite Thomas is what’s happening today… That’s okay. 

To me, it’s not about forcing someone to use a particular method. It’s about creating a rich environment that values student voice (of all kinds). It’s about providing a robust education with access to a robust language system. It’s about creating opportunity for students to be heard, to be amplified. And then celebrating everything they have to say. 

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.

How We Do It: All Talkers, All the Time

tween girl in stroller with AAC device on lap as she talks to Donald Duck
tween talking to Donald Duck with AAC system in her lap

Whenever we start a student on an AAC system, I tell people that our first step is ensuring that the device is always available. I tell parents — spend the first 2-3 weeks just bringing the talker with you. Bring it to the bathroom. Bring it to the playground. The grocery store. The bus. Seriously: before modeling, before anything else… We have to develop routines to ensure the system is available.

The obvious reason: we cannot model if the device is not there. Our students cannot use their systems if they are not there.

But also: it shows our students that we think their systems are important. We think their voice is important. We are telling our students with our actions that we want to hear what they are saying. We want to hear it everywhere, all the time, always. This world so often silences our students. We are saying — no, not us, not now, not anymore. This is powerful.

Here are some tips & tricks that we’ve used to ensure devices are available.

Set the foundation. Know your “why” for using AAC. Know it deeply. Share it with your team. Look for the moments that reinforce that why. This commitment to voice comes first. Take every opportunity to model this commitment and be a leader in the classroom.

Students can carry their systems. This isn’t always appropriate due to age, strength, etc… Adults can certainly carry systems for children. But don’t be afraid to let children carry their system. Ask them if they want to carry their system. Of note: do not make students carry their systems. The last thing we ever want to do is turn their voices into “work” that we insist they do. Show them the power by respecting their voice and choices, even if the choice is to let someone else carry it.

Use visual supports. When we first had 8 talkers in one room, it was a challenge to get them all out on the playground. We had visual supports on the door to remind us: did we get ALL of the talkers? “See me, see my AAC”, a tagline created by Kate Ahern, has frequently been posted on our bulletin boards, data sheets, and around the classroom.

iPad in pink case next to stack of Legos

Assign responsibilities. We have one person who always checks bags in the morning to make sure all talkers are available. We have another person who always checks to make sure we have all the talkers before we go to the playground. If someone sees a talker without a child, they grab it and bring it or the student or team working. We support each other. These routines have helped embed the availability of talkers into our classroom culture.

Consider the whole system. First, make sure there is always a back-up. Technology fails. Even low-tech. There are many ways to have a back-up system, each with its own strengths. Have a second iPad, a printed version, a core word board on your keychain. Remember also that an AAC system is often multimodal, more than one specific device. My daughter uses modified signs, partner-assisted scanning, word approximations, and her iPad device. Different environments require different pieces of her system; we plan accordingly.

Straps, harnesses, and more. Every device in our classroom has an attached strap. The use of straps, carrying bags (Chat Bag), or harnesses (Jabber Jas, Safe N Sound) is an individual decision. It also can change over time. Those are the most common ways to carry systems but we’ve also used a classroom cart. Be creative! I find that having some sort of carrying mechanism makes it easier to transition a device — especially if there are multiple systems in a classroom.

young girl in a stroller holding her AAC system in her lap while she participates in miniature golf

Eliminate fear. Fear of breaking tends to be one of the reasons that systems get left at home or on tables. We match students carefully to the best case and carrying system for their needs. We’ve matched students to water-resistant cases when they liked to pour fluids. We’ve matched students to cases with attached oral-motor chews when the case was bite-tempting. We’ve doubled up screen protectors. We’ve placed systems inside Ziploc bags. We’ve printed on iGage or TerraSlate paper. We also always make sure to have a warranty or AppleCare Plus.

Have you tried any of these strategies? Are there other strategies that you would recommend?

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.