Taking Flight: Alternatives to ABA
Part 5 in the excerpt series from my ebook, ABA: The Troubling History of Today's Most Popular Autism Therapy
This is a modified version of the final chapter of my book, ABA: The Troubling History of Today’s Most Popular Autism Therapy. You can get a free copy of this ebook with a paid subscription to this Substack.
We have a divide in autism services today, between the behaviourists and the inclusion advocates.
On the behaviourist/ABA side is the Lovaasian belief that autistic children are alien to our world & need to be molded into human beings (In Lovaas’s words: “constructing a person”). The behaviourists have sought to mold the child to conform and comply with their idea of normal. The behaviourists rely on a medical model of autism (something to treat, via behaviourism).
On the inclusion side are autistics, parents and providers, wanting autism services to promote acceptance in school and throughout society, connections and quality of life. The inclusion advocates use a social model of disability, asserting that autism can be accommodated, like other disabilities are.
One side is very focused on tangibles—their data, their billable hours, their licensing agreements. Their goal is to “fix” the child. The other is focused on abstract values, like inclusion and compassion. Their emphasis is on modifying the environment (school, etc.) to make sure the child can be included.
As co-founder of Canada’s autistic self-advocacy organization (Autistics for Autistics), I’ve spent nearly a decade observing these tensions, while I’ve been contributing to the inclusion effort. I’ve observed that while ideology contributes to the entrenchment of ABA (in schools and public health policy), the main driving factor is money. One simply does not get rich advocating for inclusion, whilst those who promise a cure for autism often become quite wealthy.
Follow the money
The money flowing through autism services includes hundreds of millions in bogus research (as I’ve documented in both of my ebooks) as well as truckloads of cash for lobby groups to present policymakers with an “autism plan/policy”. These pre-fab plans (like insurance mandates to fund ABA without even measuring results, now in all US states) allows policymakers to tick off the Autism box and move on to other matters. Very few policymakers even explore the validity of what they signed on to. They’re just not terribly interested.
Conversations with policymakers about inclusion are far more challenging. (I’ve had plenty of them.) Inclusion advocates are not asking policymakers to tick a box and write a cheque. We are asking for change at the systemic level; for example, revising classroom sizes and shifting school culture. The mandate for inclusion exists in the moral realm. This work involves a kind of sweat equity that’s paid back in hugs and high fives, not dollars. The main payoff is the satisfaction of helping to raise confident children, who grow to adulthood feeling they belong. Inclusion is the antithesis of Lovaas’s vision of disabled children as “monsters,” in his words.
Inclusion prioritizes children and the family as a central part of civic life--and it encompasses children with disabilities, too.
As the historian and autism dad John Summers put it: “Our kids always seem to get the worst of everything. The worst classrooms, the leftover playground equipment—and even the therapeutic ideology that was discarded by psychology 40 years ago.” ABA is that therapy. In a bureaucracy, decisions about childrearing and education are reduced to logistics and datasets (e.g., the most economically feasible model for containing them in our schools).
ABA suits that model well—its therapists are tasked mainly with recording observations of the child’s behaviour, rather than building a connection with the child. This bureaucracy is so normalized to its workers that when parents challenge them, we’re seen as the odd ones. (John’s work describes this bureaucracy very well.)
ABA is not evidence-based
Now, we may be having a different conversation if ABA actually succeeded in making autistic children grow into secure, fulfilled adults who are part of the community—but it actually does the opposite. In the research chapter of my book on ABA, I discussed the 2018 Cochrane Review meta-analysis of early-intervention ABA (EIBI) in which Reichow and colleagues concluded “the overall quality of evidence is ‘low’ or ‘very low’.” I illustrated how scholars like Bottema-Beutel, Gernsbacher, Sandbank and Whitehouse have undertaken reviews and found the vast majority of research on ABA is deeply flawed in its methodology.
Dr. Whitehouse has been outspoken about the need to raise standards in autism research. As he told me:
“To provide that evidence-based guidance is to also put yourself in the firing line of interests... Interests that are out there that are often well-meaning, that have their own beliefs about how we best support kids, but also interests that perhaps may be less than well-meaning, that simply just have financial incentives. …At the end of the day this is about giving kids and families the best shot at their one life, to be whoever they want to be and be unapologetic about that.”
The missing piece in autism policy is creativity.
While the ABA industry has tried to penetrate new markets, it is still not commonly used outside of the US and Canada. In fact, outside of our little orbit, other methods (OT, SLP) are preferred. It has not been accepted by the Standards Council in Scotland, and the Joint Committee on Disability Matters in Ireland concluded in 2023 that ABA does not align with its values. New Zealand is currently debating a total ban on ABA.
The question is, how long will ABA lurch along in America and Canada, given the lack of evidence, the expense (see my book) and the protests of families and autistic people.
In search of best practices: Parents & providers
I’ve documented in my book how unpopular ABA is with autistic people, as well as the demand by parents for different approaches. Luckily, there are plenty of places to look for non-ABA best practices, and the conversation about inclusion and quality of life. (Allow me to recommend my new book on this!)
One of the first platforms for people to share their ideas about a shift in the autism service model was Thinking Person’s Guide to Autism (TPGA) The website is filled with information, authored by people throughout the community, as well as having a strong social media presence and a book. “I have a lot of empathy for parents who don’t know what to do and who are scared,” TPGA editor Shannon Rosa told me. As she continued:
There’s not a lot of positivity or even real honesty about what autistic lives can be like, if parents and autistic people have the right kinds of supports. Our lives can be really great. I’m not saying that we can fix everything, because there are always things that are going to be hard. But we can make things so much easier if we know what to do.
Therapists are also seeking alternatives, but some of them seem stuck. Most autism-focused college programs in the US and Canada focus on accreditation in ABA, which isn’t portable to other therapeutic contexts. The typical junior ABA therapist has been educated at a community college in ABA, and most hope to be earning their living in a helping profession, caring for children. But the early days on the job can force an ethical choice. One former therapist described her workday in the early 2000s as follows:
Children were supposed to sit for thirty minute sessions, up to six a day, and work on a specific program, such as color identification or event sequencing. Children were expected to sit with hands and feet down and a quiet voice. When children failed to perform, they were often punished. We screamed “NO!” at children, sprayed water in their face, made them stand up and sit down repeatedly, put them in time outs, and used “taste aversions.”… Vinegar was the most common.
I was told this was the only evidence-based intervention available, and without it children would suffer more. I was told the brutality was necessary.
It is not only those trained in ABA who are faced with these kind of choices. Occupational therapists and speech language pathologists have to choose about whether they will participate or partner in ABA at their therapy centres, and in schools. As detailed earlier by Julie Roberts, ABA associations have even attempted to merge with their associations, for greater control.
Roberts has developed curricula through the Therapist Neurodiversity Collective, to educate about neurodiversity-affirming therapy, assistive technologies for non-speaking people (AAC) and a re-thinking of traditional “social skills training” by considering that non-autistic students, need to also be educated on autistic perspectives. The group provides innovative approaches to self-harm and aggression and works for communication rights for AAC users. She told me:
“I think parents need to start with: what is it I really want for my child? Do I want them to be able to communicate authentically? Do I want them to feel empowered as an autistic person? And, be able to live a self-determined life? Or do I want to pretend like they’re not autistic and try to make them mask [pretend to be non-autistic]?”
Parents, says Roberts, usually want to focus on quality of life for their child. The problem is they need tools for understanding, communicating, life skills, advocating, and many times school districts themselves do not have these tools. Parents often have to bring the tools to their child’s school themselves. And in some cases, as I’ve covered in my books, families choose to homeschool because school special education programs
Service provider-based programs, such as the SCERTS program are slowly making inroad. The SCERTS program works on collaboration, teaching both autistic and non-autistic children to connect. It builds off the idea that empathy is a two-way street and educating non-autistic people is part of the path to connection. Parent-founded advocacy groups are advocating too, like the Alliance Against Seclusion and Restraint (AASR). This amazing group, founded by parents, took a page from the ABA lobby’s playbook and is working state-by-state to pass legislation to ban seclusion rooms and prone restraint in public schools.
AASR’s Executive Director, Guy Stephens, the father of an autistic young adult, built an organization of 20,000 in just 4 years and is now part of a team leading workshops on peaceful alternatives to compliance training. As Stephens told me:
In many of our schools and many of our other settings, compliance becomes the goal, and that’s the wrong goal. We need connection. We need compassion. We need better approaches to help kids who are having a difficult time.
Stop measuring, start connecting
Within autism research, one of the most promising areas is collaborative and participatory projects. In all 3 of my books, I detail how qualitative work in sociology about how autistic and non-autistic people communicate--combined with participatory research into quality of life areas such as sleep, self-harm and anxiety--is the new wave of autism research—work that families desperately want. It’s about turning the research lens away from the Lovaas’s notion of autistic children as broken humans to fix, and towards the factors in their environment that we can shift, to make their lives better. Autistic children as humans, like everyone else.
The International Society of Autism Researchers now has an initiative to promote collaborative research, where they invite “community collaborators (i.e., autistic people and their family members) [to] partner with autism researchers in designing, conducting, and disseminating research studies relevant to autism.” This work centres autistic people-- not only in articulating their service needs, but in helping to learn more about what services best meet them.
All of this brings us back to the beginning of this essay, and the quagmire of quantification. If, as the ABA project has shown us, autism research has built up little more than a data-filled tower of Babel ,what kind of work will bring us the results we need?
Perhaps it is in ceasing the data-babble and engaging in a real conversation about autism, communication and fulfillment itself. What, to autistic people, comprises the details of a fulfilled life? What if we focus on quality of life instead of compliance? When a child is newly diagnosed, instead of rushing them into a behaviourist lifestyle (which is alien to nearly all of us), what if we take a breath and emphasise staying connected.
We know autistic people want the same things as non-autistic people: Love, acceptance, purpose, family and community. None of that is achieved by obsessively measuring our kids all the time, as ABA does.
Throughout their lives, autistic people are told to tone down their colour, passions and energy. Too jumpy, too flappy, too quiet, too strange. Some may spend hours and years much like the dead leaf butterfly, closed in the drab browns of conformity—camouflaging in hopes of getting a job, rent, love, family, a place to belong. Some may move about with wings shut for so long, they’re not even asked to open them, to see the shimmering blue colourings of the wing’s inside.
As I write this, I realize I haven’t given the concept of autistic joy nearly enough space in my book. I’ve mostly saved it for short bursts between other ideas—translatable ideas. I’ve been busy for months collecting citations and compiling proof of something that should, in a better world, be taken for granted: the rights of autistic people to be authentic and free. To be bright and flappy and beautiful.
To fly.