The “Severe Autism” Concept is Behaviourism’s Final Stand5 min read

In terms of psy­chology, taking a purely “behav­iourist” per­spec­tive towards human beings has actu­ally fallen way out of fashion.

For example, according to this article on MentalHelp.net, a behav­iourist’s per­spec­tive towards depres­sion is that depres­sion is learned; the per­son’s envi­ron­ment is not pro­viding enough plea­sur­able expe­ri­ences (pos­i­tive rein­force­ment). The final para­graph states:

Traditionally, behav­ior­ists did not pay much atten­tion to peo­ple’s thoughts, per­cep­tions, eval­u­a­tions or expec­ta­tions and instead focused solely on their external and directly observ­able and mea­sur­able behavior. They did this not because they weren’t aware of these internal feel­ings and thoughts, but because they thought them rel­a­tively irrel­e­vant to the process of influ­encing behavior, and too dif­fi­cult to mea­sure with any accu­racy. It turns out that this posi­tion was too extreme. More recently, research has shown that internal events such as per­cep­tions, expec­ta­tions, values, atti­tudes, per­sonal eval­u­a­tions of self and others, fears, desires, etc. do affect behavior, and are impor­tant to take into account when doing therapy.

It also fol­lows with, “As a result, old-fashioned ‘strict’ behav­ioral approaches to treating depres­sion are not as pop­ular today as they used to be.”

The reason why behav­iourism has been able to stick around so long in the form of behav­ioural analysis of autistic people is because autism has always been con­veyed as a sort of “mys­tery” dis­order.

People are still arguing about what causes autism, how to treat it, and even how to define it. Meanwhile, those of us who are actu­ally living with it are reg­u­larly down­played or out­right silenced.

Since the early ’90s, how­ever, we have been on the precipice of a com­plete par­a­digm shift when it comes to our under­standing of autism and autistic people.

In 1993, Jim Sinclair, who didn’t speak until the age of 12, pro­claimed, “Grieve if you must, for your own lost dreams. But don’t mourn for us. We are alive. We are real.”

Around this same time, researchers were ques­tioning their own per­cep­tion of autism due to the “con­tro­versy” sur­rounding facil­i­tated com­mu­ni­ca­tion. Did decades of research into autism get it wrong?

Behaviourists took it upon them­selves to con­duct rig­orous author­ship testing of those com­mu­ni­cating via sup­ported typing or spelling seem­ingly without acknowl­edging that the theory behind the method behind why it was nec­es­sary dif­fered from their own con­cep­tion of what autism is.

Pure behav­iourists only use quan­ti­ta­tive mea­sures of behav­iour as accept­able data. So they con­cluded, from the few mes­sages that con­firmed facil­i­tator influ­ence, and from the scarcity of cor­rect answers in con­trolled set­tings, that all of the mes­sages must be influ­enced.

In order to come to this con­clu­sion, it also requires the researchers to down­play or crit­i­cize the method­ology of every study per­formed or any video showing counter-evidence.

This includes, for example, an eye-tracking study showing that the person com­mu­ni­cating looked at the let­ters before their hand moved to it, and a study showing that, of about 720 inter­ac­tions, about 10% of them involved dis­clo­sure of infor­ma­tion unknown to the facil­i­tator.

They also must ignore mas­sive amounts of first­hand expe­ri­ence from family and friends of those using the method. Authorship of words can easily be val­i­dated by message-passing in real life: spellers and typers have dis­closed feeling pain that was later con­firmed by med­ical exam­i­na­tion, for example.

And, at this point in time, they also must ignore the growing research base that sup­ports the theory upon which facil­i­tated com­mu­ni­ca­tion and newer spelling methods like RPM are based on: there is a high rate of apraxia among non-speaking autis­tics, and including a mea­sure­ment of motor dif­fer­ences increases accu­racy of diag­nosing autism.

Put another way… if we look beyond a behav­iourist per­spec­tive of autism, we are seeing that some non-speakers appear to have a devel­op­mental motor dis­order rather than an intel­lec­tual dis­ability or a lack of under­standing. Their verbal com­mu­ni­ca­tion is just “locked in.”

If you actu­ally pay atten­tion to what non-speakers have written, there is a per­sis­tent ref­er­ence to a “mind-body dis­con­nect,” or an inability to plan motor func­tioning. This may describe child­hood apraxia of speech (where the brain has dif­fi­culty coor­di­nating the muscle move­ments for speech) or per­haps some­thing like ideational apraxia (the inability to select and carry out an appro­priate “motor pro­gram.”)

If the notion of “severe” autism is really a result of apraxia, we have some very solid evi­dence that behav­ioural ther­a­pies are com­pletely and utterly use­less for autistic chil­dren. If someone is unable to reli­ably con­trol their motor func­tioning, we must rely on what they com­mu­ni­cate to us in a dif­ferent way.

Observing the behav­iour alone is not related to their con­scious thoughts because the con­scious mind isn’t fully in con­trol of the body.

But “severe autism” is where behav­iourism has its last stand: “Sure, maybe you ‘high-functioning’ autis­tics don’t need behav­ioural therapy, but what about people with ‘severe’ autism? You can’t speak for them.”

No, they can speak for them­selves, actu­ally.

But there’s a con­certed effort to keep that fact on the down-low.

The biggest threat to the behav­ioural therapy industry is autistic people our­selves, because we tend to under­stand autistic behav­iour better than the vast majority of neu­rotyp­ical pro­fes­sionals, and if our knowl­edge were wide­spread, we could easily put them out of busi­ness.

Together, autistic people make up a spec­trum of life expe­ri­ences, some chal­lenging and some enjoy­able, and our col­lec­tive expe­ri­ences should inform the direc­tion of “treat­ment” for people who are like us. We know what ulti­mately works and what doesn’t, and we deserve to be given a fair chance.

The people who push the “severe” autism nar­ra­tive are cor­rect in one thing; I will give them that. There are those of us in the com­mu­nity who require more sup­port than others, and their voices aren’t being heard.

The only way to topple this tragedy nar­ra­tive is for us is to unite with autis­tics who don’t speak or can’t speak reli­ably, who also have epilepsy or cere­bral palsy, and who have learning or intel­lec­tual dis­abil­i­ties.

Where that nar­ra­tive goes wrong, though, is in the idea that these people have no voice at all. In fact, non-speakers who have learned suc­cessful methods of com­mu­ni­ca­tion have long held well-deserved places in dis­ability activism.

I believe that those of us with plat­forms are obliged to share the words of non-speakers and seek their input when­ever pos­sible. We can’t do what the “anti-neurodiversity” crowd does; we can’t argue over whose voice is more accept­able.

There are no more excuses for relying on a purely behav­iourist per­spec­tive of autistic people. We can tell you our­selves.

This article is also pub­lished at the author’s blog, NeuroInsurgent.

Ren Everett

Latest posts by Ren Everett (see all)

9 Comments

  1. Someone “dumb” has non­verbal ways to com­mu­ni­cate vol­umes

  2. I was diag­nosed ADHD/Dyslexic/Hypoxic at birth at age 12 and ASD age 59. I’m one of many who have finally con­nected all the seem­ingly dis­con­nected dots of my life to finally under­stand the “WHY” of who I am. It is one of the ben­e­fits of our infor­ma­tion age, but we are able to share and learn from our com­bined expe­ri­ences as never before. As this article says — we’re taking topics like ‘autism’ past the lim­i­ta­tions of theory and rigid def­i­n­i­tions and scope — into the under­standing of real exam­ples and under­standing of these topics. And most impor­tantly from those who live these expe­ri­ences. I write on Quora almost daily — trying to break this par­a­digm based on pathology to seeing that “NORMAL is sub­jec­tive. There is no uni­versal sin­gular stan­dard of “normal” and it is rarely an accu­rate means to mea­sure, define or under­stand those that simply have a dif­ferent “normal”.

  3. Great article, Ren.
    You’re suc­cess­fully pushing back against the Anti-ND Movement nar­ra­tive.
    And we’ll keep lifting the voices of our non­speaking autistic peers.

  4. Thanks for sharing your thoughts. This was an inter­esting read.

    I caught a small typo. If you open the draft and search for the word “w,ritten” then you will find it.

  5. Ren Everett, thank you for sharing what non­speaking and unre­li­ably speaking autis­tics have been trying to say! Thank you for sharing this truth. The evi­dence that non­speakers have move­ment chal­lenges is emerging quickly, and this knowl­edge will be life-changing!

  6. “The reason why behav­iourism has been able to stick around so long in the form of behav­ioural analysis of autistic people is because autism has always been con­veyed as a sort of “mys­tery” dis­order.”

    The ‘mys­tery’ ele­ment is the one I always try to take out when I am edu­cating or speaking to people.

    If you are log­ical and lat­eral most autistic behav­iour — qua autistic — can be under­stood — like another lan­guage or cul­ture.

    And the lin­guists and soci­ol­o­gists would not put up with this.

    “Since the early ’90s, how­ever, we have been on the precipice of a com­plete par­a­digm shift when it comes to our under­standing of autism and autistic people.”

    Hence: I could have told you this in 1993 — with no con­scious knowl­edge of Don’t mourn for us and the Geneva Centre and so on.

    “Around this same time, researchers were ques­tioning their own per­cep­tion of autism due to the “con­tro­versy” sur­rounding facil­i­tated com­mu­ni­ca­tion. Did decades of research into autism get it wrong?”

    This is the one tapped into and I hoped you would, Ren.

    People had only been researching prop­erly since 1969 with Gould and Wing and the Camberwell study.

    […]

    “If the notion of “severe” autism is really a result of apraxia, we have some very solid evi­dence that behav­ioural ther­a­pies are com­pletely and utterly use­less for autistic chil­dren. If someone is unable to reli­ably con­trol their motor func­tioning, we must rely on what they com­mu­ni­cate to us in a dif­ferent way.”

    And neu­ro­log­ical methods are rel­a­tively well-established and have an evi­den­tiary basis. Unless they were tried and didn’t work before?

    Apraxia is a neu­ro­log­ical con­di­tion first. Then lack of acces­sible social input makes a socially impaired-appearing output?

    Behaviourists focus on behav­iour because they feel and think they can change it.

    “The biggest threat to the behav­ioural therapy industry is autistic people our­selves, because we tend to under­stand autistic behav­iour better than the vast majority of neu­rotyp­ical pro­fes­sionals, and if our knowl­edge were wide­spread, we could easily put them out of busi­ness.

    Together, autistic people make up a spec­trum of life expe­ri­ences, some chal­lenging and some enjoy­able, and our col­lec­tive expe­ri­ences should inform the direc­tion of “treat­ment” for people who are like us. We know what ulti­mately works and what doesn’t, and we deserve to be given a fair chance.

    The people who push the “severe” autism nar­ra­tive are cor­rect in one thing; I will give them that. There are those of us in the com­mu­nity who require more sup­port than others, and their voices aren’t being heard.

    The only way to topple this tragedy nar­ra­tive is for us is to unite with autis­tics who don’t speak or can’t speak reli­ably, who also have epilepsy or cere­bral palsy, and who have learning or intel­lec­tual dis­abil­i­ties.”

    Especially that last para­graph and that sen­tence about unity and top­pling the nar­ra­tive. Especially in the 1980s and 1990s you had to do this because it might be your whole life­time — or at least your whole child­hood or ado­les­cence — before you met another autistic person in your neigh­bour­hood or even in your city [and this in a high-density nation] — espe­cially before there was mass Internet [which not everyone has access to par­tic­u­larly in low and middle income coun­tries].

    “Where that nar­ra­tive goes wrong, though, is in the idea that these people have no voice at all. In fact, non-speakers who have learned suc­cessful methods of com­mu­ni­ca­tion have long held well-deserved places in dis­ability activism.

    I believe that those of us with plat­forms are obliged to share the words of non-speakers and seek their input when­ever pos­sible. We can’t do what the “anti-neurodiversity” crowd does; we can’t argue over whose voice is more accept­able.”

    August 2015 I received a well-deserved pull-up from FlutistPride on this. Over the past two years I have shared — which in fact I have done since 2001 when I was pub­licly on the Internet.

    And that’s what Autistic History Month is for!

    “There are no more excuses for relying on a purely behav­iourist per­spec­tive of autistic people. We can tell you our­selves.”

    Can we/should we use behav­iourist methods to make pro­fes­sionals listen? Or should we nudge them to do it on their own with more subtle mea­sure­ments.

    For every lis­tening pro­fes­sional; there are 100; 200; 300 autists who can and will tell and com­ment.

    Thank you Journey; Luna; Beren; Seanon; Ingrid and all those who have come before and after me in the same stream.

    Would like to add finally there is a pre­sen­ta­tion on Private Events coming up — learnt that from Henny Kupferstein-Kornbluh who some of you may know for the ABA/PTSD study.


  7. Re, I just read your excel­lent article from nearly two months ago because of a link from a more recent Aspergian article. I will note that from the title I would not have known this article con­tained so many impor­tant points about Facilitated Communication. Yesterday, i finally posted to a Facebook Public Note some of the Facilitated Communication writ­ings of my non-speaking son Ben with “severe autism” at https://www.facebook.com/notes/arthur-golden/facilitated-communication-fc-by-ben-golden-december-18–2018-to-january-28–2019/3465298326821355/

    I wish to quote here the fol­lowing FCed by my son Ben:

    …Pat Mirenda is wrong that ideo­motor effect even exists and [about subtle cues because] facil­i­ta­tors would never do subtle prompts because that involves inten­tion.
    Unconscious prompts and auto­matic visual cue seeking are prob­lem­atic for all types of AAC and ABA.
    I insist on silence when I facil­i­tate because verbal prompts and verbal encour­age­ment are prob­lem­atic.…

    As a 47 year-old person with non­verbal autism intro­duced to Facilitated Communication in February 1991 and fully informed about my father’s research, I know that FC and RPM are valid com­mu­ni­ca­tion. The oppo­nents are wrong but the pro­po­nents need to take into con­sid­er­a­tion all the con­cerns of the oppo­nents including the com­ments I have written.

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