Tag: Justice

The “Severe Autism” Concept is Behaviourism’s Final Stand

This article was originally published at The Aspergian.

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.

FC, RPM, and How Wikipedia Became Complicit in Silencing Non-speaking Autistics

This article was originally published at The Aspergian.

Over the past few months, I was involved in an editing dispute on Wikipedia involving the efficacy of facilitated communication (FC) and Rapid Prompting Method (RPM).

What began with one contentious edit has now resulted in the deletion of the following biographical articles of autistic people from Wikipedia:

  • Amy Sequenzia, a prominent non-speaking self-advocate who is on the Board of Trustees for the Ausitic Self-Advocacy Network and has published multiple articles at Ollibean.com and the Autistic Women & Nonbinary Network;
  • Sue Rubin, a non-speaking author and consultant, who started communicating via supported typing and now types independently, subject and writer of the 2004 Academy Award-nominated documentary, “Autism is a World”; and
  • Benjamin Alexander, a non-speaking autistic writer and the first non-speaking student to attend Tulane University in New Orleans.

The editors responsible claim that no source that refers to any of these prominent autistic people can be considered “reliable” unless their method of communication is explicitly questioned.

Also, because I was the lone dissenting voice asking why someone’s measure of competence was subject to medical verification, I was topic-banned from editing Wikipedia pages that refer to FC and RPM.

In an article that he wrote after these deletions, one of the editors involved in this dispute called the wholesale removal of these articles — the complete erasure of living, breathing, autistic human beings and their experiences from the world’s largest encyclopedia — a “victory.”

WHAT!?

This is a ridiculous and convoluted story, so bear me with me while I try to explain what went down.

It started as a minor dispute when an editor added criticism of Amy Sequenzia’s method of communication by a noted skeptic to her Wikipedia article. I disputed this addition as potentially libelous; but instead of resolution, the matter escalated.

Another editor began to remove quotes from every non-speaking autistic self-advocate from articles about autism and neurodiversity, and then attempted to remove entire articles.

When I finally brought these disruptive edits to the attention of administrators on Wikipedia, I had already been dog-piled by uninvolved editors who: repeatedly questioned my sanity, insinuated that I was removed from reality, falsely accused me of having a conflict of interest, falsely accused me of being a sock-puppet (a secondary account to a more transparent primary).

They cornered me into having circular arguments with them, and then requested that I be topic-banned for having said circular arguments with them.

Administrators agreed, called me a waste of “productive” editors’ time, and I was indeed banned. None of the editors who abused me faced consequences for their incivility or for failing to engage me in good faith.

Talk about gaslighting.

How They Got Away with It

The articles were removed because of persistent myths surrounding facilitated communication.

Facilitated communication (also known as “FC”) is a controversial topic within autism advocacy. As an autistic self-advocate who dug deeply into the research about FC, I can tell you quite plainly that the Wikipedia article about it (which many people reference when they want to know what it is) presents a completely misleading and often completely false representation of what FC is and how it works.

The very first line of the Wikipedia article conflates facilitated communication with “supported typing” and “hand over hand.” Of note, as much time as I’ve studied this topic, I’ve not yet seen any scientific studies refer to FC as “hand over hand.”

The second line: “The facilitator holds the disabled person’s arm or hand during this process and attempts to help them move to type on a keyboard or other device.”

Just like that, you now have a mental image of a disabled person being physically manipulated by someone holding their hand so that they can type on a keyboard. Of course that sounds bogus.

How is FC described by the people who actually teach people to communicate with it?

Straight from Syracuse University’s Institute on Communication and Inclusion:

Typing to communicate or Facilitated Communication (FC) is a form of Alternative and Augmentative Communication (AAC) in which people with disabilities and communication impairments express themselves by pointing (e.g., at pictures, letters, or objects) and, more commonly, by typing (e.g., with a keyboard).

The method involves a communication partner who may provide emotional encouragement, communication supports (e.g., monitoring to make sure the person looks at the keyboard and checks for typographical errors), and a variety of physical supports, for example to provide backward resistance, to slow and stabilize the person’s movement, to inhibit impulsive pointing, or support rhythm; the facilitator should never move or lead the person.

Well, that sure sounds a lot more reasonable. Unfortunately, since the consensus made up by Wikipedia editors is based on 20-year-old misinformation about FC being pseudoscience, this website that describes the method by the actual people involved with it would be considered an “unreliable” source.

Isn’t Wikipedia supposed to present a neutral point-of-view?

You are correct; it should!

However, a combination of Wikipedia editors from the “anti-neurodiversity” or “neurodiversity-critical” movement and editors who are interested in pseudoscience and fringe theories have decided that FC, along with another communication technique that involves a support person, Rapid Prompting Method, has been “debunked.”

I was topic-banned specifically for questioning this consensus, decided upon by these editors, half of whom have a vested interest in silencing non-speaking autistic self-advocates who are in favour of neurodiversity (so they can continue to claim it excludes people they deem as “low-functioning”), and the other half of whom seem to have no actual working knowledge of autistic people, facilitated communication, or human competence.

For the ones who are actually interested in science and not pushing a negative narrative of autism, it’s not a completely far-fetched conclusion for them to make. The myth that the technique has been debunked has been repeated over and over by scientists and behavioural analysts in mainstream media, and famous skeptics have publicly questioned users of both FC and RPM, referring to the existing quantitative data as “proving” that it is illegitimate.

What does the evidence actually show?

I say this with absolute certainty as someone who actually read the damn studies myself: there is NO actual evidence that either FC or RPM are “pseudoscientific” or “debunked” methods. None.

The controversy stems from quantitative data from studies conducted in the 1990s which showed proof of facilitators influencing the messages being passed by the communicators in controlled settings. Again, I looked at these studies myself, and I don’t dispute these findings. The problem, however, lies in the generalization of these results to every single message produced by FC.

Let’s be quite clear: the evidence did NOT show that every single message was influenced by the facilitators. It is only possible to show clear facilitator influence in a situation where the facilitator knows information that the communicator does not.

In situations where both of them have access to the same information, you simply cannot conclude with any certainty that the facilitator is influencing the message. There’s no way to know.

Why did people come to that conclusion anyway?

Two reasons: the first reason involves the “ideomotor effect.”

When facilitator influence was found to be present, researchers came up with a theory involving the ideomotor effect to explain why facilitators had been so sure that they were authentically communicating with non-speaking people.

The ideomotor effect has been used to explain the phenomenon which happens when one is using dowsing rods or a Ouija board. Essentially, even though the facilitator didn’t feel themselves influencing the person, they were moving them subconsciously.

This may very well explain why facilitator influence was present in some studies. I wouldn’t dispute that fact. In fact, non-speaking folks who use FC and RPM talk about facilitator influence that they themselves have experienced!

However, once again, I stress the importance of not generalizing to every single message produced by FC.

But why not generalize? 

The answer to that is reason number two.

If you have been around autistic advocacy for awhile, you may have heard something about “presuming competence.” This essentially means to treat every person as if they are a full, thinking human being who understands language.

If someone were to put their hand on my shoulder while I was typing this article, authorship of my words would not be questioned. I have enough control over my motor functions to move my body reliably. I can speak out loud. I can verify that the words are indeed mine in a way that is recognized as “competent” by the majority of the world.

If you were to take the results of FC/RPM studies that were completed in controlled settings and extrapolate that every message passed with those particular techniques was influenced, you would essentially be saying that not being able to speak or to move your body reliably means that you also cannot think.

Why should I believe that non-speaking people can process language and think?

I graciously defer to the United for Communication Choice website on this matter, and I’ll paraphrase here:

  • Standard measurements of competence require the person to reliably speak and reliably move their body.
  • The part of your brain that controls your motor functions, including the ability to get your mouth to make words, and the part of your brain that processes and understands language are not the same.
  • There is mounting evidence to show that autism is characterized by motor and sensory differences.
  • None of the diagnoses that are associated with being unable to reliably produce speech necessarily involve intellectual disability.

Despite this, people are still perfectly content to assume that non-speaking means non-thinking. Ignorance is one thing, but to continue to insist otherwise after being presented with the evidence is downright ableism.

Is there evidence of authentic communication via FC or RPM? 

Overwhelmingly, YES! In fact, the number of peer-reviewed studies published in academic journals that support authorship actually outweigh the studies that don’t!

So what’s the problem?

Most of the studies rely on qualitative data rather than quantitative data. Essentially, the people who have been researching ways to validate these methods of communication for the past two decades (as opposed to those who have set out to prove it invalid) have mostly been concentrating on producing studies to help determine the best way to train facilitators, the best way to teach communicators, and in which situations authorship can be validated.

They have done this a number of ways: linguistic analysis of the communications produced, verifying information given that facilitators did not know, tracking the eye movements of communicators as they wrote, etc. And, of course, there are everyday people who interact with those who use FC or RPM or other methods who need no convincing that their friend or family member is communicating authentically.

For example, Arthur Leonard Schalow, an American physicist, co-inventor of the laser, and one of the winners of the 1981 Nobel Prize in Physics for work in determining atomic energy levels, was involved in bringing FC to the United States with Douglas Biklen. Schalow’s son is autistic, non-speaking, and types to communicate.

In the 1993 documentary, Prisoners of Silence, which came out following one of the first studies claiming to “debunk” FC, Schalow says:

I don’t need any more validation. My son has given me a lot of information, much of which I didn’t know. A lot of it’s been about what he wanted, and it’s turned out that that’s what he did want. He asked even for a trip to Hawaii and he sat, good as gold, on the plane for five hours to Hawaii. And occasionally he tells me something I didn’t suspect, like at the restaurant a few weeks ago, he said– he typed out, “Look at her mane”– M-A-N-E. Well, I looked and the waitress had a ponytail.

The man was clearly intelligent, and despite the evidence claiming otherwise, he firmly believed his son was authentically communicating with him. Given everything I’ve read so far, I don’t see why he shouldn’t.

Moving forward from here…

Why did I spend hours of my time researching FC and RPM, arguing with ignorant Wikipedia editors, and then write a 2,000 word article about it if I don’t have a vested interest in the methods?

Because I believe it’s the right thing to do.

I am not saying that every single communication passed through FC or RPM is always valid, but I am saying that we have no reason to assume they can never be valid. On this basis, I think that autistic self-advocates who can speak or type without a communication partner seriously need to step up their game when it comes to our fellow autistics who cannot.

FC, RPM, and other methods of AAC may be in their early stages of development and require much more research before they are consistently validated by quantitative studies.

The longer that we allow people to refer to these methods as “debunked” or “pseudoscientific,” the longer it will take for people to take these methods seriously enough to consider further research, and the longer non-speaking autistic people will continue to be silenced.

The way forward for advocates and for parents of autistic children:

  • Presume competence in non-speaking people (because you have no reason not to).
  • Correct people who claim that FC or RPM is “pseudoscientific.” These methods are not medical treatments that can be debunked. They are forms of communication which require further research to be consistently validated.
  • Verify information that has important consequences for the person communicating (decisions about living arrangements, allegations of abuse, etc.)
  • Listen to non-speaking autistic people.

All people deserve the opportunity to authentically express themselves. Singling out one method of communication as invalid when it could be the only method that someone can use to communicate is reprehensible, particularly when there is overwhelming evidence that it can be valid.

That people have called FC an “abuse of human rights” has me gobsmacked (e.g., in this Forbes article that uses the Wikipedia page as its source that FC is “thoroughly debunked”). How is giving someone every opportunity to authentically communicate “abuse” unless you believe that the person is a mere puppet with their strings being pulled or something akin to “channeling,” as one Wikipedia editor put it?

The real abuse of human rights occurs when you presume incompetence.

Communication is a human right.


Further information from non-speaking autistic people on FC and RPM

Other Notable Resources to Check Out

Syracuse University – Institute on Communication and Inclusion

United for Communication Choice – A coalition of disability advocacy groups

ASAN Letter to ASHA On The Right To Communicate

“Facts about Facilitated Communication” by Douglas Biklen

“About Facilitated Communication” by Ralph Savarese

Wikipedia References (Updated July 20, 2019):

Some of the Wikipedia pages that detail the dispute I’m referencing:

Unfortunately, the vast majority of incivil comments and false accusations directed at me occurred on the Talk page for Amy Sequenzia, which has now been deleted, so I can’t link to it. A Wikipedia administrator would be able to access and verify this.

Potentially of interest, one of the involved editors was once reported to the Administrators’ Noticeboard for these exact types of edits. It doesn’t appear that anything came of it.

Current Status (Updated July 20, 2019):

  • DELETED: Tito Mukhopadhyay, a non-speaking autistic author who uses RPM
  • NOMINATED: “The Mind Tree”, Tito Mukhopadhyay’s second book
  • NOMINATED: “Autism is a World,” the Oscar-nominated documentary featuring Sue Rubin (whose page has already been deleted)
  • DELETED: Lucy Blackman, a non-speaking autistic author (added July 11, 2019)
  • Not nominated for deletion, but the article of Anne McDonald, who was a disability advocate and activist with cerebral palsy, has now been targeted as the comments on this article have brought her existence to the attention of a certain ND-critical editor. (added July 11, 2019)
  • DELETED: Birger Sellin, the first non-speaking person to become a published author in Germany (added July 13, 2019)
  • NOMINATED: Larry Bissonnette, an American artist and autistic activist (added July 20, 2019)
  • NOMINATED: Naoki Higashida, a Japanese author, poet, and essayist, called one of the most famous authors in Japan (added July 20, 2019)
  • NOMINATED: The Reason I Jump, one of Naoki’s books (added July 20, 2019)
  • NOMINATED: Fall Down 7 Times, Get Up 8, another of Naoki’s books (added July 20, 2019)

Expect more to come if no one steps up.