Our Report to the Government of Canada: Part 2, The Issue of ABA Funding

We are blogging our report and recommendations to the Government of Canada, by section. Below is our discussion of ABA funding policy.

Full report: A4A National Policy Report & Recommendations, 2019

ABA: The system that takes and takes
It’s time for us to address the elephant in the room: most provinces are directing most or all of their autism funding to an autism therapy that isn’t scientific and that autistic people do not want: Applied Behaviour Analytics (ABA). There are many ethical and practical reasons to oppose provincial governments spending all their autism dollars on ABA, but we will focus on the most obvious: paying for thousands of kids to get an $80,000 per year therapy that has never even been studied with even one random control trial, and whose recipients actively campaign against, is not sustainable.

A prime example is Ontario’s failed approach of investing billions in ABA–wasting so much government money that there literally was none left for the programs that would make real change, such as:

  • School inclusion mandates using universal design;
  • Services such as speech language pathology, psychotherapy and OT;
  • Education about AAC to give non-verbal people access to school, workplaces and medical care;
  • Employment programs that work;
  • Affordable housing programs that respect disabled people and bring sustainable results;
  • Education for first responders;
  • and more.

If we look at the “success” of ABA in the 18 years since it was rolled out in Ontario, the statistics are grim. For an estimated $300 million per year in government-funded ABA, we in Ontario now have:

  • More school exclusions;
  • More mental health issues and higher rates of suicide;
  • Growing joblessness; and
  • Increased housing insecurity.

The failures of the ABA-dominated funding scheme are not surprising when you consider that ABA 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. As well, the profession of ABA doesn’t just ignore abusive practices among its own members–it endorses them. For example, the Judge Rotenberg Centre, an ABA-designed- and-run centre, has been using shock torture on autistic and IDD people, a practice which has now been banned by the FDA and is classified as torture by United Nations watchdogs. Yet the Association for Behavior Analysis International (ABAI) decided to feature the Judge Rotenberg Center (JRC) at their 2019 annual conference. 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.”

We can’t move forward without naming this schism: between ABA industry reps (who hire lobbying firms to build relationships with politicians) and ordinary autistic people and our families without any dollars, who are asking to be heard. Indeed, the only way to break from the old model of autism services is to become open to constituents like us, as well as independent data, with a  clear mind unfettered by entrenched financial and political relationships. It’s an uphill battle, in other words.

Successful, non-ABA programs are available at less cost that the “behaviour” industry (read our paper about them), but it requires a culture shift within policymaking towards integration and autistic acceptance–with an audit system that prevents the fiscal abuses that have been rife within autism services in Canada.

What has held this change back is threefold:

1. Lack of awareness among policymakers that systems of accountability are non-existent or failing;

2. Political relationships between politicians and local ABA/IBI centres; and

3. Lack of political will to push back against the ABA/IBI industry’s mandates (the current Ontario government being a notable exception to this).

There are families in Ontario who chose not to use ABA and opt for psychotherapy, developmental therapies (e.g., RDI, DIR Floortime) or programs like the SCERTS program, or science-based services that teach life-skills like Occupational Therapy (OT) and Speech Language Pathology (SLP). These families are mostly sidelined from funding and sometimes even stigmatized by schools—in most provinces, they are paying 100% out of pocket for non-ABA services that helped their children. Some families also home educate their children as the only way to avoid ABA-mandated EAs at school. Inclusion-based programs, which are thriving elsewhere, still remain largely invisible in our federal policy landscape.

When autistic people point out facts (above) or share ideas, we often feel like it’s unwelcome because it’s “not the way we’ve always done it.” But really, that’s exactly the point. It’s time for change.