Wasted Opportunity, Wasted Money: The 2018 Ontario Autism Program

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n 2017, the Ontario Association for Behaviour Analysis hired Pathway Group to lobby eight Ministries at Queen’s Park. Today, under the new $500 million government autism plan (Ontario Autism Program), only ABA is allowed in schools –and therapists who receive public funding (including SLPs and OTs) now must become ABA certified.

Non-ABA stakeholders, especially #actuallyautistic voices, were consistently shut out of the OAP consultation process. Shockingly, the half-billion dollar plan was developed without any input from the autistic community.

The OAP does not serve the needs of the community it claims to serve. With the entire budget earmarked for ABA and none for useful services, it should immediately be scrapped by the new government. This wholesale conversion towards one preferred provider is a waste of money and opportunity. ABA is based on neither science nor evidence: it is an outmoded, cruel form of behaviourism that autistics, researchers and many families oppose.

Recommendations

  1. The OAP should be replaced by a new, leaner and more effective plan reflecting science and the input of the population it is supposed to serve – autistic Ontarians.
  2. The Ministry of Children and Youth Services should no longer be the authority over autism services by having control of this portfolio. Services to autistic adults have been systematically denied as a result of this misdirected authority.
  3. The new government must take responsibility and consult with autistic self-advocates such as Autistics for Autistics (A4A)and Canadian Autistics United, as well as experts in disability services and accommodations.

What went wrong
How did the government get it so wrong? One clue can be found in a bureaucratic misstep: placing management of services to autistics under the authority of the Ministry of Child and Youth Services. There are tens of thousands of autistic adults in Ontario, yet the current OAP contains not one sentence about the needs of autistic adults.

Another clue is the relationship between ABA professional organizations and the advising process within the government. Several members of the Advisory Committee for the current OAP are practitioners/trainers in ABA. Despite repeated efforts from autistics, disability advocates and non-ABA service providers to be meaningfully included in consultation, these stakeholder groups were excluded from the Liberals’ OAP advisory process.

These issues came up when Ontario Child and Youth Services Minister Coteau held two Tele-Town Halls about the Ontario Autism Program (OAP) earlier this month. Concerned parents asked the Minister why autistic self-advocates were not consulted during the development of the program and why ABA has supplanted all previous existing services available to autistic children. Minister Coteau did not answer these questions directly, but he reiterated that the OAP budget will be solely earmarked for ABA-brand providers and training programs.

Today, we have one industry dominating the entire autistic service system in our province, with useful programs and services having been stripped away in the process. The half-billion dollar question is: why?

How ABA establishes market dominance
Like other conditions and disabilities, the reality of being autistic in Ontario is best understood by consulting with the community: autistic children and adults. Yet when the Liberals sought to develop a program to serve autistics, they rebuffed our efforts to connect. 

Other stakeholders report the same experience, including a coalition of non-ABA providers of services and accommodations (who as government contractors are not allowed to make public statements).

This situation is not unique to Ontario. Globally, some industries have been accused of attempting to squeeze out their competition, using a 3-pronged approach:

  1. Positioning themselves as the “only experts” on autism;
  2. Making unscientific claims that appeal to emotions; and
  3. Requiring other professionals to be absorbed into their system in order to receive funding.

Let’s look at the three methods below.

1. The “only experts” strategy

Sometimes providers will position themselves as the only experts on autism and state that ABA is “the only evidence-based practice”. Through this strategy, governments may be encouraged to stonewall other stakeholders…legitimate voices suddenly portrayed as illegitimate in what looks like a sales pitch.

The claim that ABA-certified professionals are “the only experts” has the potential to undermine confidence in their service competitors and give ABA a greater market share. There isn’t validity to the “only evidenced-based service” soundbyte — but repeated often enough, people begin to believe it. To this end, we can’t help but see it as marketing in its basest form.

ABA’s founder, O. Ivor Lovaas, was also the founder of a brutal “gay conversion” program, which claimed to stop young people from being gay, now illegal for children under 18 in Ontario because it violates human rights. Far from being experts on autism, some providers fundamentally misunderstand autism and basic neurology, with practices that attempt to “convert” autistics to appear neurotypical at any cost. Like the gay conversion therapy designed by the founder of ABA, these practices run counter to Canadian values and human rights.

As 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, “–as autistic people have long argued should be the case–the onus is on the [parents and teachers] to work harder to understand and communicate with their child, rather than to try to ‘fix’ them.”

2. Unscientific claims
One of the core claims of the ABA marketing blitz is that it is “the only evidence-based” approach to autism. In reality, the research into ABA is very much under scrutiny and falling out of favour in many jurisdictions. As Michelle Dawson writes: “‘Scientifically proven’ and ‘medically necessary’ are terms that encompass the assumption that the scientific and medical ethics have been accounted for. In autism, these terms are applied to a treatment whose ethics remain unexamined.”

ABA research has been historically plagued by poor methodology. As neuroscientist Laurent Montrant of the University of Montreal writes in his study, its “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.” (emphasis added). This is due in part to newer research in the neuroscience field, knowledge that demonstrates a fundamental incompatibility of the Behaviourist approach to autistic lives and realities.

Montrant notes: “There is currently no scientific, ethical, or societal justification” for Behaviourist early interventions.

Non-Behaviourist approaches have been studied and these rigorous studies demonstrate that autism acceptance (the opposite of ABA) leads to the best outcomes for autistics. In fact, there is a broad range of new research into better ways than ABA. It does not appear that this research was consulted when developing the OAP.

While behaviourists tend to focus on autism as a set of behaviours to modify, neurology tells a different story and the medical community concurs that autism is biologically wired. ABA’s approach to neurodiversity simply does not reflect what we know about the human brain; for example, much of the literature of ABA portrays autistics as flawed versions of normal — then it offers a supposed fix. Parents and governments may take the bait because ABA proponents play on emotions (especially fear) to sell their product.

ABA providers may promise to make an autistic child “nearly indistinguishable” from peers. They may tell parents that there is only a tiny window of time in a child’s life to intervene, and that only intensive/expensive Behaviourism will help their child. Finally, they may use the tired, discriminatory trope of “pay now or pay later” to suggest that children who undergo ABA have better outcomes. There is no evidence to support those claims.

3. Absorbing other professionals
Under the new OAP, non-ABA providers will be required to engage in expensive professional development programs to become BCBA-certified therapists — or risk losing their funding. Personal support workers who had integrated successfully into schools with their students will be asked to leave their positions if they don’t become ABA therapists.Included in the mandate are OTs, PTs, and Speech Language Pathologists, none of whom have a need (or a desire) to be trained in an antiquated form of Behaviourism.

Under the OAP, thousands of Ontario professionals who are accredited and respected in their fields have been knocked down the rungs as “illegitimate” if they do not have an expensive BCBA certification. Requiring BCBA certification does not help autistic people: it only brings business to certifying bodies and attempts to position the ABA brand as the perceived gold standard in autism services.

Who profits or benefits from unnecessary accreditation? How could provincial money be better appropriated? And why did our government gamble on a single approach that autistic people don’t want? Who is the winner — and who are the losers — in this gamble?

What can be done

The new Government needs to put the brakes on the OAP now. Advocates are mobilizing across interest-groups to say no to the program. The OAP represents wasted money and opportunities — and our coalitions, united, will not stand for it.

We are personally and intimately aware of the pain, anxiety and PTSD that autistic children and adults suffer due to Behaviourist therapies. We oppose ABA in any form. As self-advocates, we support useful supports, services, programs and accommodations — not so-called cures or therapies.

We are far from alone in this perspective. Autistic self-advocates and allies who support progressive approaches are an interest group that is growing every day.

It is misguided to place “autism services” under the authority of the Child and Youth Ministry, when tens of thousands of autistic young adults and adults in Ontario are also integral to any true service model. Other groups such as racialized and LGBT communities, as well as many disabled communities, have services by and for all ages, shapes, sizes, and geographic locations led by their own people. So should we.
Autistics are crucial to developing effective policy that responds to needs and respects human rights.

Our province deserves better than the current OAC. Together with our allies in the community and government, we will change the culture of autism policy at Queen’s Park to one that is fair, humane and equitable — reflecting the needs, the voice and the vision of our community.

If you are interested in learning more, please read more About us. If you would like to join our efforts, find us on Facebook or Contact us.