Many times “evidence-based therapy” can be little more than a marketing strategy.

Evidence-based:

– It is a term that in psychology is often used to designate a therapy as being of a different orientation than traditional psychotherapy, without necessarily having scientific studies that show its long-term benefits or the perception of well-being on the part of the client and the recipient of the therapy.

– Studies that theoretically show “evidence” often base their evidence of efficacy over “doing nothing” or over pseudotherapies designed for the study in question, not over established therapies.

– There is a “publication bias” where studies that do not show if the therapy under study is significantly better than others, the study is not published, affecting meta-analyses.

This information is from Dr. Johnathan Shedler, who notes that these highly standardized forms of therapy are more marketing strategy than tangibly-helpful interventions. They’re data-driven, unnatural behavioral approaches that depend on exploiting bad science to create a myth of being effective.

This phenomenon most often occurs in “autism” interventions, wherein the evidence of greater effectiveness of therapy that presumes to be “evidence-based” is not superior when compared to other interventions.

Evidence of What?

It’s important for consumers, especially those making decisions for children, to be skeptical of statements that advertise a therapy as “scientifically proven” or “evidence-based.” What exactly is the evidence proving?

Sometimes, those who most aggressively repeat the words “science” and “evidence” are remiss when it comes to saying what that means. When asked what specifically is evidenced, they remain silent, toss out jargon-heavy academic articles behind Research Gate paywalls listing everything and anything related to ABA, or quote the Ivar Lovaas’s 1987 study showing the questionable achievement of “indistinguishability from peers.” At the same time, they go to great lengths to separate themselves from Lovaas’s methods, or even worse, to justify them by citing cultural context.

And in respect to ABA the answer is very clear: The majority of the cases, many times with insignificant numbers (yes, often single case design with only one learner) and performed by those who sell ABA, show that with the “adequate” reinforcers, a person changes specific behaviors.

I am not questioning that it’s true that ABA influences behavior; but for me, that fact is not evidence of much. If a person is given a token of affection (or a sign of interest, or a connection on their terms) when they let someone prick their finger with a needle and only when they let someone prick they finger, they will most likely learn over time to let people prick them without questioning. Most of the time, it is up to the family to consider what the autistic person should learn or unlearn, and not the autistic person.

If the family and therapeutic team are not understanding the autistic perspective, they can train the autistic person to ignore their own needs and wants for affection or other rewards like access to their security blanket or favorite toy– because only when they comply are they are allowed to do what they enjoy.

Until then, they are restricted from what they want until they achieve what they set out to do in therapy. This therapy can be as intensive as 40 hours per week for children under the age of three.

Evidence Is Not Ethics

I, and many others, seek to go further when it comes to any study about autism:

• Why are we studying this?
• What are we trying to achieve, and why?
• Are there ethical problems in respect to these results or the means by which someone tries to achieve them?

Evidence Based on What?

For me, studies of effectiveness in achieving behavioral change are not sufficient proof of appropriateness, long-term well-being, or that the benefits outweigh the risks, especially since so many times unquestionable obedience is what is being taught.

In addition, for a therapy to be “evidence-based,” the following is required:

• Clinical experience
• Best current research
• Client/patient perspectives

Assuming that ABA complies with the first two points, (it doesn’t), the last point requires careful review and consideration. In autism studies– historically and often even currently– only the perspective of families, excluding the autistic person, are considered.

This happens not only with ABA but with countless studies on treatment and medications “for autism” in general. And hence the enormous biases of interpretation towards autistic people and the very frequent unintentional damage that is caused to us.

The so-called “scientific evidence” is not exempt from these biases. Let us not naively believe that everything that claims to be “science” is unquestionably positive.

Editor’s note: This article was originally published in Spanish on Aprender a Quereme and has been republished by the author, a member of The Aspergian team.

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aprenderaquererme

I'm an Autistic mother of neurodivergent teens. I write in my blog Aprender a Quererme - Autista cuestionando paradigmas (Learning to love myself, autistic person questioning paradigms) and am part of the the following autistic collectives writing in Spanish or translating articles:
Mi Cerebro Atípico
Traduciendo Autistas
Autismo, Liberación y Orgullo
I am Colombian, living in Colombia but have also lived in Argentina, Ecuador, and Costa Rica.
I am probably one of the first persons writing in Spanish about autism from the perspective of the Neurodiversity Movement and as an Autistic person.
I am an instructor at Rio Abierto where I can stim while dancing
I used to be a software developer.

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Latest posts by aprenderaquererme (see all)

• Toxic Positivity, Gaslighting, and Tone Policing Autistic People - August 19, 2020
• ABA and Neurotypical Bias - December 23, 2019
• On ABA: Evidence-based Doesn’t Mean Good Therapy - December 12, 2019