What is ABA therapy, or Applied Behavioral Analysis? Why is it an inappropriate therapy for autistic kids? How did Ivar Lovaas convinced parents that ABA was better for their autistic kids than other options? How did ABA edge out other autism approaches? We recently sat down with Anne Borden King to discuss her new book about ABA therapy’s convoluted history.
Thinking Person’s Guide to Autism (TPGA): So I just finished reading your wonderful book, ABA: The Troubled History and Legacy of Today’s Most Popular Autism Therapy.
Anne Borden King: Mouthful. [laughs]
TPGA: [chuckles] It’s a mouthful because the topic is a brainful, and people need to know. One things from your book that I thought was important to bring up is, “Despite the controversy around ABA, it has continued to dominate American and Canadian autism services, and to get at why we need to understand the origins of the ABA ideology.” Could you talk a little bit about those origins? What is ABA? What is operant conditioning? How is it that Lovaas convinced people that ABA was better for their children than other options?
I guess those are three questions. Why don’t we start at the beginning? What is ABA therapy?
King: ABA therapy is a behaviorist form of autism therapy that’s based on the concept of operant conditioning. As I understand it, it’s basically conditioning the people to behave in a certain way through the use of rewards and punishments, and they can take a physical or psychological form. One thing that’s very unique about ABA is the intensity of it. It’s often diagnosed for children to do 30, 35, or 40 hours a week, even as toddlers and preschoolers, of this intensive training, where they’re constantly being trained all day long through this operant conditioning system.
I can go into who also came up with modern ABA, which was Ole Ivar Lovaas. I think to understand why Lovaas and ABA became so popular, we have to look at the residential institutions that existed in the time of Lovaas, which were these terrifying, punitive residential institutions where people with developmental disabilities, including autism, were being warehoused. They were very cruel types of institutions where there was a lot of abuse. There was sexual abuse, there was physical abuse. People were exploited for their labor and had to work on farms. People were restrained, secluded, locked up. It was like a hell. It was just absolute torture.
Parents were told in, say, the ’40s, ’50s, and ’60s, if they had kids, even sometimes kids with Down syndrome, kids that were autistic, kids with support needs, that the “best thing” to do was to put them into these residential institutions. Interestingly, when Lovaas came along, we were at the point where we were starting to deinstitutionalize particularly people with physical disabilities. Parents were beginning to get traction in demanding to get their kids out of the institution. I think what Lovaas did was he promised parents that they’d be able to keep their kids out of these hellish institutions, but the only way to do that was by using ABA.
He offered ABA as the only alternative to institutions. He said it in interviews if you don’t use ABA, your kid could end up in shackles in an institution. That rhetoric frightened people into believing that ABA was the answer and the solution, and that ABA was part of deinstitutionalization. Now, the irony, of course, is that he just copied everything they were doing in the institution. He just copied all of the token systems of rewards and punishment, even physical punishment, even electrocution as punishment.
TPGA: The cattle prods.
King: The cattle prods, he was doing the same thing that the institutions were doing but just in an outpatient clinical setting.
TPGA: And teaching people to do that in their homes.
King: Do it in their homes, right, into as an entire lifestyle. It was basically almost akin to institutional life, but it was proposed as an alternative. Parents took it. I think he leveraged the fear of the institutions really well to sell his system.
TPGA: It is just so distressing. I would say that nowadays, of course, most people, most parents of autistic kids would never allow their children, you would think—obviously, the Judge Rotenberg Center still exists, but generally, most people of young autistic children would not allow their children to be subjected to punitive electrical shocking devices. We get the arguments that there is now a nicer, kinder ABA. How would you respond to those arguments?
King: You can’t really have an operant conditioning system that’s nice, or that fits in with our modern ideas of how children should be treated. It’s the way that the whole system is set up, is you take things away from a child when they don’t behave in the perfect compliant way that you want them to. It’s traumatizing to have things be taken away from you, things that are special. They’re still taking away people’s special toys, special animals, their devices. Other things like that are being taken away from them. There might not be physical punishments in those cases, but it’s psychologically destroying to have these special things be taken away from you.
It’s also very destroying psychologically for a small child to have to spend 35 or 40 hours a week in a therapeutic setting just being drilled on life skills in a way that’s not kind. They’re not being allowed to have a childhood. Of course, ABA, even the “nice” ABA in a setting like a group home, isn’t very nice because people don’t have the freedom to make their own choices, such as to have a snack when they want to have a snack, a snack or an outing is a reward. These are just people that have the right to live free.
If you separate yourself from all of this reward and punishment and “token economies” as they call them, you don’t have any ABA left because the entire structure of ABA is based on that. There’s nothing else to it. Sometimes people say they’re doing ABA, and they’re just lying and they’re doing something nice, but what they’re doing isn’t ABA. That’s my take on what from what I’ve read.
TPGA: Another issue mentioned in your book is that it doesn’t matter what the children are being trained in, whether it was colors or numbers. The discrete trial training, the repetition training that’s at the center of ABA has a deeper purpose and that is conditioning the child to be compliant to the therapist’s commands. Can you talk a little bit about the dangers of being trained into compliance, especially at such a young age?
King: Because this ABA compliance goes way beyond what we might do as parents or what might happen in a typical classroom. Obviously, everyone learns a certain amount of following the rules. This is not what this is. This is a steroids-extreme version of following the rules. They’re expected to follow a lot more rules than any of the rest of us are expected to follow and that their neurotypical peers are expected to follow. What happens is they’re never allowed to say no, and they get punished if they ever say no.
Meanwhile, in our elementary school classrooms for non-autistic kids, they’re learning about consent. They’re learning about the fact that you can say no, and you can say no to protect yourself, protect yourself from being exploited, protect yourself from being abused, stand up for yourself. These are the things that neurotypical children are taught how to do, whereas, autistic children in an ABA-specific special education classroom setting, they are taught that if they say no, they’re going to get punished.
These autistic kids are then open to being exploited in their life because they’re afraid, and they haven’t learned and got the toolkit and skill set to say no to someone who might exploit them sexually, exploit them economically, exploit them in their job. As life goes on, they’re more open to being exploited because they didn’t learn that the same rules of consent apply to them.
TPGA: I was particularly struck by your statement that it seems outlandish that we would postpone joy, meting it out only as a reward for discrete trial training. That is just so disturbing.
You were told that you had to put your child in ABA, and you chose not to. You had the option not to. You said you had to quit your career and join the homeschool community because the public system only had one option for our kid, and that was ABA-based special education classroom.
Now, you’re in Canada, but this is the case often in the United States as well. Could you talk about this a little bit, not only the choice that you had to make, but how many parents who don’t necessarily have options can get stuck in these systems? First of all, can you talk about the choice that you made, and why you made that choice, and how it has turned out for your family?
King: First of all, I really appreciate your recent article about how parents can negotiate and cope if they’re in a situation where they have to do ABA. I was really, really glad that you wrote that because it’s very important for people who are forced into situations they don’t have control over, to have some control and also not to feel they’re being judged against some perfect standard by the neurodiversity community. This is a reality for people’s lives. In Ontario schools, if you have an autistic kid, it is mandated that their personal classroom support worker is an ABA technician. That’s the law. You can’t even bring your own support worker in and pay for it.
If you want to put your kid in public school—and there are a lot of really compelling reasons why people want to put their kid in public school—but if they’re in a mainstream classroom and they need a support worker in class, it’s going to be an ABA technician. Then you have to do this cascade of negotiations. First of all, occasionally you can make best friends with the principal. I recommend that everybody become best friends with the principal at the school. You’ll see that that’s worked the best for families. Sometimes they can convince the principal to bring in their own person, but very rarely.
Most of the time families are negotiating with the principal to make sure that some of their child’s boundaries are respected, and to educate the school community about why autistic children have also the same rights as the other children: to be free, to be happy, to be bratty sometimes, like all kids. It’s a huge responsibility for a parent who must put their child into public education. There are many reasons why people must. It’s completely understandable you have to do this negotiation, which I think TPGA really teaches people well how to do. How do you manage in that system? The world isn’t perfect.
For me, as I am an autistic person, I thought my own journey of parent advocacy, which was more than 10 years ago. It was a harder journey of advocacy. No one had even heard of neurodiversity. At times, I felt like I wouldn’t be able to handle it; I wouldn’t do a good job, I wouldn’t be able to be the diplomatic best friend of the principal. It would blow up in our faces. It was just too much. So I took what, for me, was the easy route, which was to just homeschool. It’s not for everyone.
Homeschooling did work out for us. It’s hard, though. It’s not like it’s easy. [chuckles] It’s an interesting community with its ups and downs. Sometimes it’s lonely, and it certainly is a lot. I still glad I did it. I think it was good for my kid. It’s also a decision you make depending on the temperament of your kid. My kid needs to move a lot. Especially when he was little, really needed to move a lot. It’s also a decision you make depend on the temperament of your kid. He was on springs, and there wasn’t any public school that was going to be able to give him the freedom to be the springy kid that he was.
TPGA: So many of our autistic kids are highly kinetic, they need to move. And they can get punished for that need. I still have a visual reminder icon from my son’s early ABA program. It says, “Hands down, feet on floor, quiet voice.” My son, I don’t think he’s as kinetic as your son, but he’s pretty active. It’s unrealistic for most small children to sit still all the time, but for our kids, it’s especially wrong. I’m so sorry to hear about that, but I’m so glad you were able to make the choices that worked for your son and for you.
King: I just thought to myself, “What can I realistically expect? I’m going to be killing myself with advocacy at the school, or I can just shut it down right now. I don’t have to ask anybody. We can just go to the playground and have a great time.” That was it for us. I understand it’s not something everyone can do. I do appreciate that people are talking about this. It worked out great for us, I have to say. By the time we got to high school, we found a school for him, and it’s worked out. That’s been really, really great.
TPGA: That’s so wonderful.
King: It was a good match for him to be doing what we were doing.
TPGA: I liked your quote from the book, that you are confident that “keeping him out of the ABA system was not the catastrophic life choice you were told it would be.”
King: [laughs] It’s also difficult saying because people are going to tell you, you’ve got to do it [ABA therapy].
TPGA: Yes. Another thing that we hear a lot from parents, and also from the therapists themselves, is that “Oh, but we’re such nice people. We’re helping.” The thing is that this external helper mentality, the “I’m such a good person for helping these poor kids,” it keeps too many ABA people blindly moving forward and not really thinking about what it is they are doing to these autistic kids.
And that is what you wrote in talking to a former ABA therapist, who said that their greatest regret was that they thought that because they cared about the kid’s well-being, because they had a strong desire to help them, that everything they did must therefore be in that kid’s best interests—even if the kids cry, even if they try to escape, even if they refuse, the kids have to do it because the therapists decided it is good for them and that they are helping them.
Could you talk a little bit about why this approach is the opposite of helpful? Basically, the fact that these people are coming largely from the non-autistic world, the non-neurodiversity world, and they don’t understand autism: What can happen if they actually start understanding autistic perspectives, and why it is so crucial to have those perspective and how those help fight against the ABA model?
King: It’s really important because the ABA people don’t understand autism. I know this, because I know autistic people who have tried to go out and become personal support workers. It hasn’t gone well because they’re put into a ABA-based system as a personal support worker, and they just can’t do the things they’re asked to do to their clients. It hurts them because as autistic people, they understand how hurtful it is experience what they’re asking the autistic clients to do. Autistic people tend to have more empathy for other autistic people. We see that in the work of Catherine Crompton and Noah Sasson, it bears itself out.
It’s not intentionally cruel. It’s a lack of an empathetic understanding of how it feels. Of course, the road to hell is paved with good intentions. Now is the time to listen to autistic people who are saying, “[ABA] might seem nice from your perspective, but autistic people are saying this is not a good way to be treated.” They have to really be listening to autistic voices about that and be humble.
I talk about that in the book, when I’m talking to Andrew Whitehouse, who’s an amazing researcher from Australia. He’s reviewing autism research, and he’s saying there’s an element of humility missing here among the researchers and providers. It’s not necessarily intentional. It’s not like they’re bad people, but they are missing a little bit of listening skills and humility, and ability to learn and adapt, and change to what autistic people are saying about these things, and even what neuroscientists are saying about how this affects people.
TPGA: Could you just give us a few examples of specific ways, like sensory processing and those kinds of things, that the ABA model doesn’t understand about autistic neurology and existence, and how those can conflict with ABA models of discrete trial training?
King: Yes. First and foremost, I know you’ve talked about this too, and TPGA talks about this, autistic people need downtime. It’s absolutely frenetic and just unbelievable the amount of performing that’s expected of these kids in discrete trial training and in the ABA systems. Autistic people need downtime, and they need comfort spaces, comfort zones. That is home. It’s not an ABA lab. It’s certainly not sitting down in an empty room with a robot, which now they’re doing, as you know.
It’s common sense that also some of these things are unique to autism, and some of them are just human. Kids need to play. If you’re putting a kid into a punitive program where they’re always watching and trying to perform and trying to just be a certain way and they can’t be themselves and they can’t be playful, the need to play and the need to have downtime, that’s true for all children. It’s just true in unique ways for autistic kids. Also, autistic kids need to feel accepted. Acceptance isn’t part of compliance-based training. With ABA, you’re only accepted if you comply. You’re not accepted for who you are. That, of course, can have a lifelong traumatizing effect.
TPGA: Then there’s the issue that you talked about, regarding downtime and the way autistic kids play, it might not look the same as play looks for a non-autistic kid. For instance, if an autistic child was stimming or scripting or rocking back and forth or needing to pace, those are the kinds of things that for an autistic child that would be functional. Even as a stress release from the stress of being in the ABA program—but then the ABA program would probably seek to extinguish those behaviors as what Lovaas called “garbage behavior.” It’s just so distressing.
The Joint Committee on Disability Matters in Ireland concluded in 2023 that ABA does not align with the United Nations Convention on the Rights of Persons With Disabilities, and New Zealand is debating a ban on ABA. Yet in the United States and Canada, ABA is mandated.
How did we get to the point where therapy that is not evidence-based and has so many conflicts of interest is considered a “gold standard”? Because when people scrutinize the research behind ABA, we see that it is not being conducted in a way that would pass the rigorous scrutiny most research trials require.
King: That’s an interesting question. I really wanted to info dump about this issue in my book, but I had to get the book done. I didn’t want to get too much into social history. I’m really glad you asked because I’m going to talk about it for a second. The Space Race and the Cold War created conformity culture in America and in Canada in a way that didn’t happen in Europe and other parts of the world. Conformity culture is a lot of the reason why behaviorism, not just ABA, but all behaviorism remained popular, even when it was being debunked in America, because schools changed after Sputnik launched. They really did.
They really became focused on performance, grades, tests. Funding was tied to how kids did on tests. Everyone was expected to march along like a little robot, whereas schools were a freer place before then. I think that that is part of it, this aspect that Lovaas came up with in the post-war period, was this idea of autistic kids becoming indistinguishable from their peers. I think that’s more important in American and Canadian society than in some other societies. Also, I think the way that policy and bureaucracy work together in our two countries is a little bit different than in some other countries. Policymakers really like to get a package and sign it and go, rather than building a program. There isn’t a lot of critical thought going into what they’re signing off on.
The ABA industry was very good at putting together packages for policymakers. I wrote about that in my book, how they went state by state by state, in all 50 states to have a mandate to require ABA.
We were there too, but the ABA people were just so much more organized in their lobbying. You did not see speech-language pathologists with millions of dollars behind them going and meeting with legislators. It just wasn’t happening. Unfortunately, they were the first out of the gate in terms of understanding how policymaking works, and they played it. They got it into every state. Now, to undo their work would mean a lot of work for policymakers.
They’d have to do the work for themselves because there isn’t really an alternatively strong group of people bringing them a new package, a non-ABA package. This only happens like it happened in Ontario, where you have a couple of people close to the cabinet of our provincial legislature, who had autistic kids, who pushed against ABA. We’re still missing that piece. Some of it’s just lassitude. Some of it’s just, “Well, we’ve always done it this way, and we’re just going to keep doing it this way.”
TPGA: Could you talk about how ABA has become a big investment target, how private equity have been coming into the ABA realm? It’s really disturbing. I keep seeing all these advertisements in my social media feeds about how you can make big money in ABA, that you don’t even need any training, that people could just start their own ABA company and make money out of the gate.
King: It’s not just happening in ABA. It’s happening in all healthcare. It’s the smart sizing movement that’s happening, smart sizing being, “let’s do everything we can as cheap as possible,” because these mega conglomerate companies are swallowing up our healthcare institutions. They’re swallowing up assisted living facilities and similar places. I’ve seen it. You drive past these places, and they have a different name every week because some company has gobbled them up.
ABA centers are a perfect target for these giant conglomerates. They can buy up 50 ABA centers and make them run cheaper, so the policymakers are happy, the insurers are happy, the parents are happy, because everyone’s paying less. But what has happened is they’ve watered the level of care down, so much; it used to be that someone practicing ABA had to have at least a two-year degree from a college. But with these big private equity companies that are swallowing the ABA centers up, they’ll say, “We don’t need that for our ABA center. We can just train somebody in eight hours with the YouTube videos.”
TPGA: Oh my God.
King: I think what’s happening with that is that they are cheapening a system that was already problematic, and everybody’s happy because they’re paying less. That’s the deal that’s happening. They’re even now downloading ABA to robots and having a kid sit in a room with a talking robot, because it’s cheaper.
TPGA: Part of me wonders how many of our kids might actually figure out how to game the robot and make it into something that would work for them. [laughter]
King: It’s so dystopian and horrible.
TPGA: I think it’s crucial for people to understand how problematic ABA therapy is and how it doesn’t actually help our children. It traumatizes them. It continues to traumatize them if they’re older and they’re still in day programs and group settings.
ABA continues to be a problem for people like my autistic son, who’s 24, and is a one-to-one guy. He aged out of his school program and services at 22. He’s been home for two years. I could not find a single day program for him that would do one-to-one support that wasn’t ABA-based. I will say that I also have the ability and the good fortune to stay at home with him and hire people for him, but I have to find those people on my own because with most agencies everybody is ABA-trained. When I advertise, I make it clear that I don’t care if you people any experience. I care that they have a calm personality and that they’re willing to be trained, because I don’t want anybody from the ABA system working with my son.
He was in the ABA system when he was younger, and I can see the effects on him. He’s just a nice person in general, but I don’t think he would be as compliant as he is if he hadn’t been through all that ABA training.
Is there anything that I haven’t asked about your book that you would like to talk about?
King: I would just say two things. The first thing is for people to know is that there’s hope. I think there really are a lot of great speech-language pathologists, a lot of great occupational therapists, and a lot of promise in new programs that are emerging, like the SCERTs program. Schools are more open, and at least they know the word neurodiversity now. There are openings for us to make a change, even though it’s a very, very slow process.
I wouldn’t give up hope. I see it as an evolution and that we are evolving towards more humane approaches. That’s because of the hard work of autistic advocates and also parents and groups like the Alliance Against Seclusion and Restraint, organizations like Thinking Person’s Guide to Autism, all of these coming together. It doesn’t feel like it’s moving fast enough for us, but it is moving, actually, quite fast for institutions like schools and things like that. We just have to keep trying and working.
The other thing I would mention is I do have another book. It’s called The Children Do Not Consent: The Search for Autism’s Cure and The Kids Who Pay the Cost. It’s an ebook, and it’s about the problems in autism research, human rights issues in autism research, and ends on a high note also with talking about how autism research is transforming, thanks to the work that people are doing, particularly some of the work that you’ve reported on at INSAR. Again, hopeful of change.
