The gold standard.
Founded in evidence-based practice.
It’s medically necessary.
The Lies People Tell (to Sell)
There isn’t an autism epidemic, exactly. What we have is an increased awareness of autism in the general population due to a shifting perspective on what characterizes the human rights of individuals, and particularly, of children.
This country has a dark history of institutionalizing anyone whose behaviors didn’t fit within the accepted range of neurotypical behavior. Self-advocacy movements, and an evolution in parenting and teaching methods– those backed by neuroscience and basic human dignity– are largely shaping the landscape of human interaction for the better.
The “evidence-based” practice claim made by Applied Behavior Analysis (ABA) enthusiasts is factual in that if you crush the spirit of a human, that person tends to perform the way you condition them– but is it ethical, or even a desirable outcome of therapy, to destroy the individual you set out to help? Which leads us to medically necessary.
There are campaigns in the United States, Canada, and the United Kingdom with the goal of legally-enforcing autism therapy as medically necessary for autistic children. If compliance is what society seeks of its population, then ABA is a well-formulated method for delivering that compliance. Despite the objection to ABA therapy on strong scientific, ethical, and moral grounds, parents could be at risk of being accused of negligence for not agreeing to ABA for their children.
Indeed, many families with joint custody, foster parents, and adoptive parents have been court-ordered or mandated by social services to subject their autistic children to intensive ABA for no other reason than the child is autistic.
Is ABA necessary to help autistic children grow into successful adults? No. It is, however, a growing industry led by people who can stomach the exploitation of vulnerable children for a profit.
Not Just Your Friendly Therapist
Private equity firms have begun investing in middle market Applied Behavior Analysis companies. The term “middle market” sounds innocent enough, but what defines middle market? The value of a company in terms of revenue and/or assets as low as five million dollars and as high as one billion dollars is considered to be mid-market (Divestopedia, 2019).
ABA practitioners like to refer to their work as the gold standard of treatment for autism. The implication is that behavior analysis is some sort of highly-regulated and esteemed practice which produces the most refined autistic adults. This photo depicts what is more likely being referenced when professionals speak of ABA as the gold standard:
This quote from a Rolling Stones article published during the 2016 presidential election cycle explains well what private equity firms have been up to in the United States over the past three decades, and foreshadows what we can likely expect from this sudden influx of capital into the “autism market”:
“Their priority is to maximize profits,” the president [Obama] said of PE firms, and “that’s not always going to be good for businesses or communities or workers.” […] It takes several years before the impacts of this predatory activity – reduced customer service, inferior products – become fully apparent, but by that time the private equity firm has generally resold the business at a profit and moved on. (Kosman, 2012) […] Private equity-owned companies reduce jobs over their first two years of ownership by 3.6 percent more than their competitors, and that the worst job cuts come in the third year after a buyout, according to a study by the World Economic Forum. (Kosman, 2018)
What happens in an industry wherein a service like Applied Behavior Analysis has been marketed to parents as the only way to help their autistic children? What happens if that service is deemed medically necessary?
This article is the first in a series about the financial and human implications of the ABA industry.
References
“What Is the Middle Market? – Definition from Divestopedia.” Divestopedia.com, https://www.divestopedia.com/definition/877/middle-market.
Kosman, Josh. “Why Private Equity Really Is Capitalism at Its Worst.” Rolling Stone, 25 June 2018, https://www.rollingstone.com/politics/politics-news/why-private-equity-firms-like-bain-really-are-the-worst-of-capitalism-241519/.
- He Killed My Cat: On the dangers of dating while autistic - January 6, 2020
- Raising Autistics: Children are people, not property - November 7, 2019
- We’ve Been Commoditized - November 2, 2019
8 Responses
I “like”, But I cannot remember my password. 🙁
Thank you so much for telling us! That’s even better <3
This is very worrisome, There is NO meaningful standards for the ‘diagnosis’ of ‘autism’. It is ‘diagnosed simply on observed behaviour with no understanding of the cause, Making any treatment for an arbitrarily defined symptom sounds positively mediaeval.
There are such a wide, wide variations in behaviour that is classified as autistic and as well as causes.
watching with interest. Very concerning.
For me too, Debra,
something which particularly concerned me was the equation with private equity companies and their machinations.
And yet having this all done or significantly done by a nation’s or region’s government …
I have never liked ABA. We always preferred RDI (relational developmental therapy). For those who only received ABA I see a marked difference in those who had RDI in that they seem to be able to function and adapt better in changing circumstances and situations. Less robotic behavior. We did RDI with a tiny bit of ABA. I think making ABA manditory is dangerous.
Lisa,
two things about Relationship Development Intervention which particularly impressed me when I first discovered it in 2002 were:
* co-regulation
* productive uncertainty
and then I didn’t get much further because I didn’t take a course; though I did read the message board occasionally until 2005-06.
Gutstein seemed sometimes to be a rock star; and so did Shelly [Rochelle].
As an Autistic parent of an very likely autistic child, the thought of mandatory ABA therapy scares me. Right now my daughter is on a waiting list to be evaluated for autism at a local children’s hospital. I have no idea what my state’s stance is on mandatory ABA therapy. I’m worried that I would be pushed into doing ABA therapy for my daughter. Of course I’ll say no, I just hope I don’t get in trouble for choosing to protect my daughter.