by Autistics for Autistics Ontario
Autistics for Autistics opposes ABA in any form. Some of our reasons are below, followed by background on ABA and alternatives to ABA. (Please also read the hyperlinks for more information.)
Reason 1: Autistics who have undergone ABA are 81 percent 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, and the roots of PTSD were found in the first session for most study participants. There is also a correlation between ABA and suicidality according to a study by the International Society for Autism Research.
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. Saying or expressing “no” is punished with aversives such as taking away something the child loves. This has long-lasting psychological effects and can impact future judgement and relationships.
Reason 3: Young children who undergo IBI or ABA are denied a normal childhood.
Most centres keep toddlers and preschoolers in 25-40 hours a week of therapy at a time in their lives when they should be connecting with their families, playing outside and getting to know their peers. It is the ultimate segregation and, in effect, makes autistic preschoolers go to work every day rather than exploring their natural development as other children can.
Reason 4: Autistic people do not like or want ABA.
Autistics overwhelmingly report that their experience of ABA is negative. Autistics deserve to feel comfortable, safe and have dignity throughout their lives, including childhood and school. Unfortunately, our province does not recognize disability rights in this regard and still funds programs that force autistic people to receive a century-old “treatment” that they do not want.
Reason 5: There are better ways than ABA — but ABA professional organizations lobby for total dominance.
There is never one approach to anything, and yet ABA organizations will say theirs is the “only evidence-based practice”. It’s not. There are many wonderful accommodations and services that are left out of the funding models in places like Ontario, with tragic results. The elephant in the room is that the ABA industry wants it that way. Read our report on the Ontario situation to learn more.
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, 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 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.
The Practice of ABA
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”. While the Center has been condemned for its practices by the United Nations among others, note that none of the major professional organizations of ABA providers have condemned the actions of the Center. (For updates on the campaign to stop the use of shock aversives, visit the ADAPT website).
In Ontario, children as young as two years old are put into 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.) At the end of the child’s day, 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.
Forbes science writer Emily Wilmingham points out: “With ABA, the burden is on the child to somehow understand and modify behavior in situations that they often aren’t even old enough to intellectualize.” With other approaches, “the onus is on the [parents and teachers] to understand and communicate with their child, rather than to try to ‘fix’ them.”
Why ABA doesn’t work
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, when faced with a child in meltdown or shutdown (a response to the therapy), escalates the situation by locking their child in his room for hours on end.
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. 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.” Newer research in the neuroscience field is incompatible with the Behaviourist approach.
The Politics of ABA
There are positive alternatives to ABA; in fact, many jurisdictions outside of Ontario (such as the UK) have stopped funding ABA in favour of other approaches. Others provide a range of service options, not just ABA.
Yet, after the Ontario Association for Behaviour Analysis hired lobbyists targeting eight Ministries at Queen’s Park, in 2017 the Liberal government unveiled a new $500 million government autism plan (Ontario Autism Program) where only ABA is funded, only ABA is allowed in schools –and therapists who receive public funding (including SLPs and OTs) now must become ABA-certified. Ontario’s entire autism programming budget has thus been earmarked for ABA. Today, not one dollar goes towards programs or services related to autism that are non-ABA.
Some parent-led organizations also have professional relationships with the ABA industry. Autism Speaks Canada, for example, collaborates on an online documentary series which features children (too young to consent to having their supposed “social deficits” exploited onscreen) to promote the work of a Canadian ABA therapist. (Please Contact us if you would like to be involve in our campaign around this).
It is disturbing that some Ontario parents support ABA, since it is neither wanted by autistics (the group supposedly being served) nor does it appear to be humane or effective. Why the disconnect? It may be that some parents have been frightened into thinking ABA is the only way to help their child. Indeed, parents report having engaged in therapies that don’t feel good to them or their child, because they have been told it is the only way to help their child. Since ABA is the only provincially-funded therapy, some parents and teachers may also believe that it is better than nothing.
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. An extreme example of this is the mommy-blogger who recently admitted to forcing her autistic child to attend a Sesame Street performance by dragging him through hallways and sitting on him, even as he screamed to leave.
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.”
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 the problem-solving process and prevents positive accommodations and solutions from being implemented.
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, because ABA fundamentally seeks to invalidate the authentic selfhood of autistic children. ABA approaches autistic children as a series of behaviours and deficits to fix and retrain, rather than as, well… people.
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.
Universal Design. As with other conditions or disability, accommodations should be central to any home, workplace, school or public space. The concept of universal design is that accessibility is “a fundamental condition of good design.”
We have a long way to go in Ontario on universal design. Accessibility is too often left to the discretion of individual teachers, employers or others. For example, some Ontario public school teachers implement classroom design changes that help autistic students and transform lives, but these projects are currently all ad hoc. The Province should consult with autistics and teachers and undertake a Universal Design study for making classrooms across the province accessible and friendly for autistic learners.
The principles of universal design can also be applied in the workplace and in public spaces. We are seeing promising changes from the IT sector in making job interviews and work spaces and arrangements accessible for autistic employees. Government should consult with autistics and employers about their best practices to learn and implement them in a range of areas.
At present, autistics are not consulted by the Ontario Government when developing the programs that impact us. Autistic youth and adults should be consulted when policy is made. The Province can follow the disability rights approach, where the clients are consulted on the accommodations and services needed. This approach can be used to look at best practices across the board.
Autistics as Experts. Currently, the Province’s approach to autism services has been determined by lobbying groups often led by parents. This is unfortunate, because most parents are not autistic, they are not experts and they may know very little about what truly works for autistics. And as hard as this may be to hear, their goals do not automatically align with the goals of their children.
Policymakers: learn what your autistic constituents need –from us, not our parents. Also, look to other jurisdictions that take a progressive approach to disability and/or autism. Our province’s services need to transform into a fair, helpful system and away from the wrong-headed and bloated service model we currently suffer under.
Autonomy in communication, work, housing independence, 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. In fact, Ontario’s current Autism Plan does not even mention AAC, employment, housing, services for adults or a host of other community priorities. Only ABA is funded.
If Ontario is to become a province that embraces equality, policymakers need to move sharply away from the approach of making parents and ABA providers the sole stakeholders and instead focus on the experiences and input of autistics and other disabled Ontarians.
ABA tried to teach us never to say no. But we are going to remain noncompliant, 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.