We’ve Been Commoditized3 min read

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:

garbage

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/.

pastthequasar

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8 Comments

  1. I “like”, But I cannot remember my pass­word. 🙁

    1. Thank you so much for telling us! That’s even better <3

  2. 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.

    1. 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 …

  3. 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.

    1. 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].

  4. 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.

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