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.