by Autistics for Autistics Ontario
Autistics for Autistics opposes ABA in any form, because ABA is founded on a dehumanizing, segregationist approach to autistic people. We understand we could make ourselves a lot more popular by stepping back from this issue, but in good conscience we can’t — and we never will.
In this piece, we give 5 reasons not to support ABA; offer historical background into ABA; discuss ABA’s use and condoning of FDA-banned torture in institutions; and present some alternatives to ABA.
Reason 1: Autistics who have undergone ABA are more likely to suffer from PTSD. The risk of suicidality is also significantly higher for ABA participants.
Research shows that ABA is overwhelmingly traumatic and has a lifelong effect. One study linked increased exposure to ABA with increasing severity of PTSD. There is also a correlation between ABA and suicidality according to a study by the International Society for Autism Research.
Behaviour is communication –but instead of listening to the communication, ABA providers silence their students with aversive and “rewards”. When an autistic toddler flaps her hands, she is communicating something to the adults around her (that she is excited or upset, for example). An ABA provider will say “quiet hands” or physically hold down the child’s hands to discourage this communication. Quiet Hands severely impacts expressive abilities and have a lifelong effect. The suicide rate of autistic people is 9x the rate of the general population, and it isn’t because of “autism”. It is because of abuse, stigma, segregation and harm caused by institutions and therapies such as ABA/IBI.
Reason 2: ABA training makes children vulnerable to abuse throughout their lifetime.
A child is not allowed to say “no” in ABA. ABA teaches compliance at any cost: children are told over and over to ignore their gut feelings and abandon their sense of personal space. ABA providers punish children who say no, using aversives such as taking away something the child loves (in the “nice” ABA) or physical aversives like electroshock (in other forms of ABA.) Compliance at any cost is always the end goal.
Adults may see it as “success” that a child no longer expresses views or preferences, but in fact it is a devastating loss. Punishing autistic children for saying no has long-lasting psychological effects and can impact future judgement and relationships, making us particularly vulnerable to sexual and other physical abuse throughout our lives.
Reason 3: Young children who undergo IBI/ABA are denied a normal childhood.
Many intensive ABA centres (known as IBI centres) keep toddlers and preschoolers in 25-40 hours a week of therapy at a time when they should be connecting with their families, playing outside and getting to know the other children in their neighbourhood. They are segregated from their community into “intensive” institutional settings and as a result, they are not allowed the crucial developmental cornerstone of free play. When they start school, they and their peers don’t know or understand each other because they didn’t play or attend preschool together.
As a result, autistic children often end up quickly streamed into segregated classrooms–and then graduate into segregated lives. The genesis of this lifetime of segregation is the IBI centre.
Intensive ABA therapy (IBI) is not scientifically-proven (in fact, there has never been a random control trial of IBI or ABA). It is recommended simply because is profitable for the ABA industry. Children in jurisdictions that do not broadly support ABA — such as in the UK — effectively learn life skills without it. In fact, they are better able to integrate into mainstream classrooms because they have been in proximity to their peers from early childhood and more likely to be included at school. The ABA/IBI approach is counter-productive to healthy child development. It denies children the right to be children and to be included with their peers.
Reason 4: Autistic people do not like or want ABA.
Really, this should be the only reason we need to give. The very people being “served” by the therapy report trauma from it. Autistics overwhelmingly report that their experience of ABA is negative. In a survey of 11,000+ people, more than 90 per cent of autistics did not support ABA. These findings are standard, whenever a survey or study is done on autistic views on ABA. In fact, we have yet to find an autistic adult who experienced ABA and endorses it.
Autistics deserve to feel comfortable, safe and have dignity at every age. Unfortunately, our province still funds programs that force autistic children to receive a century-old “treatment” that they do not want.
Reason 5: There are better ways than ABA — but ABA organizations lobby for dominance.
The ABA lobby uses fear to sell its product, claiming that only their “life-changing” therapy can help autistic children learn life skills or communicate. Their claim is a lie. There are many non-ABA therapies, services and approaches that effectively teach life-skills.
AAC, the communication platforms that assist non-speaking people, were invented by teams including autistic people and are in no way affiliated with ABA–yet the ABA lobby in Ontario effectively lobbied for AAC to only be funded if it was recommended and taught by an ABA provider! That is clear bias and especially troubling because on average, it takes more than 2 years for non-verbal children in ABA to even receive AAC. They are denied communication rights as ABA therapists attempt to “force” them to talk. These children need AAC now and it is inhumane and ableist to force them to wait.
Families who said no to ABA and had non-verbal children were left to DIY assistive communication technologies, abandoned by policymakers who caved to the ABA industry. (Update, October 2019: The current government of Ontario appears to be preparing to reverse this decision: we will update when we learn more).
Read our Human Rights Report to learn more about the impact of ABA-run public policy and read our report on the Ontario policy situation to learn how the ABA lobby shut out useful services in Ontario.
History and philosophy of ABA
ABA, also know as autistic conversion therapy, is a form of Radical Behaviourism, which has its roots in the thinking of BF Skinner, who studied animal subjects in the 1930s and 1940s, using electric shocks and other aversives to control animal behaviour. ABA’s founder, O. Ivor Lovaas, did not understand autism and the myths he perpetuated still power the ABA movement.
Writing about his autistic patients, Lovaas stated:
“You have a person in the physical sense –they have hair, a nose, a mouth, but they are not people in the psychological sense. One way to look at the job [of autism therapy] is to see it as a matter of constructing a person. You have the raw materials, but you have to build the person.”
Sadly, in ABA literature we still often still see the idea that autism is a deviation to be fixed and a “real” child constructed through the therapy.
Countering this myth, autistic self-advocate Maxfield Sparrow writes: “Autism is not a shell surrounding a ‘normal’ child. …Autism in your child’s DNA, brain, sensory organs. Autism is so much a part of who your child is that many of us Autistic adults who are able to communicate, and who choose to talk about being Autistic, will tell you that it hurts us to hear or read phrases like ‘fight autism,’ because it feels like people want to fight us.”
Lovaas, who founded ABA, was also the founder of a brutal gay conversion program, which falsely claimed to stop young people from being gay. Gay conversion therapy is now illegal for children under age 18 in Ontario because it violates human rights. It has also been banned in many jurisdictions for adults because it violates the Charter. Similar to its founder’s gay conversion therapy method, ABA likewise attempts to convert autistics towards the goal of appearing “indistinguishable from peers” –at any cost.
ABA’s Use and Endorsement of Torture: The Rotenberg Center
Through ABA’s early interventions, autistic children are exposed to hundreds of repetitive discrete trials, where they are forced to perform simple tasks over and over to earn rewards or –if they don’t perform– they are given aversives, which range from electric shocks and other physical punishment to psychological torture such as being isolated, having beloved objects taken away or providers refusing to address their communicated needs.
One example of physical aversives in ABA at a residential/day centre is the Judge Rotenberg Center in Massachusetts, where autistic and other disabled residents are deprived of food and given electric shocks to correct “behaviour”.
The FDA has banned the use of shock torture and is moving to enforce this ruling against the Centre, yet none of the major professional organizations of ABA providers have condemned the actions of the Center.
In fact, their international organization–the ABAI–featured the JRC at its conference in May 2019 and promoted the FDA-banned torture practices there. As the Autistic Self Advocacy Network writes:
“ABAI’s decision to give JRC a platform at their conference reflects a continued pattern of complicity in the torture of the very population that they claim to serve. Furthermore, the JRC’s presentation at this conference specifically focuses on the merits of the electric shock device. This means that ABAI is more than complicit in the abuse taking place at the JRC: they are actively endorsing these practices.”
(For updates on the campaign to stop the use of shock aversives, visit the ADAPT website).
IBI: A Full-time Job
Many of our members who were in IBI are grieving the childhood they were never allowed to have because they were put in abusive full-time IBI programs. In Ontario, children as young as two years old are placed in programs that consist of 6-8-hours per day of repetitive drills at a therapy centre – segregated from their neurotypical peers (who, unlike them, get to engage in free play and other developmentally appropriate activities.)
It is more than a full-time job for these children. ABA drills typically continue in the home because parents are told to continue the program there, essentially playing the role of therapist rather than parent. This can quickly erode trust and compromise the parent-child relationship.
By virtue of their geography and ideology, the IBI centres separate the autistic children and stigmatize them as broken versions of normal, not truly a part of their communities. It is no surprise then that autistic children in Ontario have been starting school at a social disadvantage; they are not a part of their neighbourhood community (because they attended IBI centres, not their local community spaces). It should be no surprise that their peers (who don’t have experience playing with autistic kids) likewise lack the social skills to relate to them.
Without a social context or social bonds, nor the life skills that they could have developed through the normal free play and community activities of early childhood, many autistic students in Ontario primary schools are doomed to be out of place and adults (ever-eager to place them) too often stream them into special education classes and consign them to 13 years of segregation within school. Those students who do remain in the mainstream classroom are typically paired with an ABA aide (and only ABA aides are allowed in Ontario schools, per the former government’s PPM 140), with districts still seeing ABA as the solution –when in our view, it is really the heart of the problem.
Once school has finished, students in special education or those who experience institutionalized stigma within a mainstream class, are less likely to attain any type of post-secondary education and more likely to end up living in segregated group homes and unemployed or working in a segregated workplace. This outcome, also, is completely predictable. By contrast, students who are integrated into the mainstream in a meaningful way are more likely to thrive and achieve autonomous living with or without varying degrees of support.
ABA: A Setup for segregation, not an “evidence-based intervention”
ABA’s impossible expectation (for the child to act the same as neurotypical peers) is a setup for failure –and failure is too often blamed on the child. Parents who start out with a standard ABA program may then be encouraged to increase the intensity of aversives; an example would be a parent who escalates the situation and engages in practices that are damaging to the child.
Children who react naturally to the (highly unnatural) expectations and protocols of ABA are seen as “non-compliant”, resistant and burdensome to practitioners and even to some families. And then the situation escalates.
As a former ABA provider writes: “The overall concept of compliance training is an integral part of many ABA programs. The rule is, once you give a command as an ABA Therapist, you must follow through with it no matter what. If a child tries to cry or escape or engage in any other ‘behaviors,'” the therapist can’t intervene to help or comfort the child.
Even if the ends could justify the means, ABA doesn’t appear to actually “work”. Research reviews show that ABA studies have been historically plagued by poor methodology. A big red flag is there are no randomized control-group studies of ABA nor anything longitudinal with meaningful benchmarks, nor are their any studies of end-users’ experiences or what they have to say about the practice. Unsurprisingly, newer research in the neuroscience field is incompatible with the BCBA approach.
As neuroscientist Laurent Mottron of the University of Montreal writes in his study, ABA research’s “efficacy has been called into question in the last decade due to poor-quality data, small effects, low cost-efficiency, and the evolution of ethical and societal standards.”
The Politics of ABA in Ontario: Follow the Money
There are alternatives to ABA; in fact, many jurisdictions outside of Ontario (such as the UK, Scotland and Ireland) fund little if any ABA, in favour of useful services and therapies. Other jurisdictions also provide a range of service options, not just ABA.
Unfortunately, after the Ontario Association for Behaviour Analysis hired lobbyists targeting eight Ministries at Queen’s Park in 2017, the government unveiled a $500 million government autism plan (Ontario Autism Program) where only ABA was funded, only ABA was allowed in schools –and therapists who receive public funding (including SLPs and OTs) now must become ABA-certified. Ontario’s entire autism programming budget was thus earmarked for ABA.
Some MPPs have ABA centres int heir ridings, which raise the question of pork-barrel politics, and at least one politician had a family connection. Former Ontario Premier Kathleen Wynne’s wife was a stakeholder in an autism service agency for many years. During the years that she was with the agency, their government funding — from the Ministry of Children and Youth Services — jumped by 60%. Also, the loudest parent-led organizations has a professional relationship with the ABA industry.
Typically, providers tell parents ABA is their “only hope” and “the only evidence-based early intervention.” The term early intervention simultaneously lends providers a veneer of professional credentials, as well as creating a sense of panic that causes parents to make radical decisions about their child’s care in haste. It is not a parent’s only hope and selling it as such is a crass move to make money, as they have done by working the political system in their favour.
ABA versus Acceptance
Some parents also support ABA for a more disturbing reason: the idea that their autistic child is not the child they wanted, and the desire to transform their autistic child into one that mimics a neurotypical child.
Whether the child is autistic or neurotypical, every parent has to eventually accept that they are not getting the mini-me they may have dreamed of. The later this knowledge comes, the more damage is done. Many of us have felt this rejection from our parents and it doesn’t get any easier. No matter the therapies, we cannot change who we are. So when our parents perceive us as perpetually not good enough, not NT enough, it has a profound effect.
As Aaden Friday writes in their essay When You’re Autistic, Abuse is Considered Love: “I was told that I was loved every day, and yet I sincerely believed there were parts of me that I needed to destroy in order to be worthy of that love — and so I tried, and failed, and grew up traumatized, without ever understanding what healthy love looks like.”
In contrast, autistic acceptance is crucial to ensuring a child gets the supports they need. ABA’s focus on “behaviour” often makes it confusing for parents to recognize and accept their child’s needs, because much of the child’s communication efforts are mislabeled as “negative behaviours” to be punished rather than communication to be responded to. In addition to being cruel, this approach also stymies problem-solving and alienates parents and children from each other.
There is no “good ABA”
Some of us have been asked if we support “the good ABA”. But from the perspective of neurodiversity, there is no good ABA. ABA approaches autistic children as a series of behaviours and deficits to fix and retrain, rather than as, well… people. The founder of ABA, O. Ivor Lovaas wrote: “You start pretty much from scratch when you work with an autistic child. You have a person in the physical sense – they have hair, a nose and a mouth – but they are not people in the psychological sense. One way to look at the job of helping autistic kids is to see it as a matter of constructing a person.” This attitude about autistic people remains pervasive within the field of ABA.
At the risk of sounding ironic, the ABA industry cannot regulate itself. As we saw above (“ABA’s use of Torture”), they continue to actively endorse torture tactics that are banned by the FDA and condemned by the United Nations. To put BCBAs in charge of other BCBAs as a self-regulating body in Ontario (which they are proposing) would be a horrific example of the foxes guarding the henhouse. It cannot happen. In the strongest terms possible, we urge our government to reject that proposal.
For these and other reasons above, we don’t see that ABA can be redeemed or re-branded: it should just be relegated to the dustbin of failed psychiatric approaches. And the sooner the better. It is heartbreaking to think of the many useful services and accommodations that have been neglected due to our province’s over-focus on ABA.
But it’s not too late to change!
Alternatives to ABA
What are the positive alternatives to the negative ABA cycle we’ve been experiencing in our province? Here is a brief look.
Inclusive Design. As with other conditions or disability, accommodations for autistic people should be central to any home, workplace, school or public space. The concept of inclusive or universal design is that accessibility is “a fundamental condition of design”. It is good for everybody!
According to the Ontario Human Rights Commission’s recent report, special education in Ontario essentially hasn’t changed in more than 30 years. Currently in Ontario, accessibility is left to the discretion of individual teachers and boards. The Province should consult with autistics and teachers and undertake an Inclusive Design study for making classrooms across the province accessible and inclusive for autistic learners.
Augmentative and Alternative Communication (AAC). The term AAC means the communication methods used to supplement or replace speech or writing for non-verbal or partially-verbal autistics. There are various platforms depending on the user’s preference and situation.
AAC can be learned and taught by a variety of providers. We encourage parents to work with an SLP or another professional outside of ABA, since many BCBAs discourage this crucial toolset for communicating.
Speech Language Pathology, Occupational Therapy and Developmental Therapies (RDI, Floortime). There are a range of therapies for children and adults geared towards life skills, motor planning and building connections between parent and child. Please contact us to learn more and get resources on what is available to you locally.
Autonomy, comfort, freedom and dignity are important to us all – yet none of these appear on any Individualized List of Goals and Objectives for ABA Services. If Ontario is to become a province that embraces equality, policymakers need to move sharply away from the approach of prioritizing ABA (which segregates children and limits their potential) and instead focus on progressive services and inclusive practices.
ABA tried to teach us never to say no. But we are going to remain non-compliant, stand with our allies and say NO to ABA in this province. Because when you say no to ABA, you discover what you can say yes to. It’s time for our province to find out, too.
If you are located in Ontario and would like to get involved with A4A, please Contact us or find us on Facebook (A4A Ontario) or Twitter @a4aontario.
If you are outside Ontario, we have a list of organizations working for better ways than ABA, you can Contact us by email to learn more.