Information – NeuroInsurgent

Autism and ADHD: Neurological Cousins

This article was originally published at The Aspergian.

October is ADHD Awareness Month!

In the six months or so leading up to the assessment in which I was diagnosed as autistic, I had first “self-diagnosed” with ADHD. A friend suggested it to me, and the more I read, the more I related, and the more everything in my life that hadn’t made sense for 28 years fell into place.

It took probably a year and a half post-assessment before I really started looking into the autism side of my diagnosis. In my written report, my (very excellent) psychologist had suggested that doing so may help me to understand myself better. She was spot on!

Having immersed myself in ADHD literature before switching over to reading about autistic people, I like to believe that I have a pretty good grasp of what characterizes each condition, but like with many neurological disorders, there is a lot of overlap.

“Attention deficit” is not entirely accurate…

Like autism, ADHD is characterized mainly by what diagnosticians have observed, rather than what the person actually experiences. Challenges with focusing, hyperactivity, and impulsivity are the most noticeable traits, but for many ADHDers, these aren’t actually their primary challenges, and many say that ADHD is a misnomer.

ADHDers have what has been called an “interest-based nervous system.” We might have difficulty concentrating on something difficult or uninteresting, but we can also hyperfocus on the things that we’re really into. The real experience of ADHD is not a deficit of attention, but an inability to regulate it.

Hyperactive on the outside; restless on the inside.

Hyperactivity in ADHD often changes as we grow into adults, and we are instead more likely to have restless thoughts. Along with that comes impulsivity, the other “defining” trait of ADHD.

Between the restless thoughts and difficulty concentrating, it’s easy to just do without thinking. ADHDers say things we would prefer to take back immediately; we’re prone to buying things without thinking it through first; and we are very much at risk of forming addictions.

Executive functioning is at the core

However, like autism, the criteria in the DSM for ADHD consist mainly of what psychologists have observed, rather than what the person actually experiences. Challenges with focusing, hyperactivity, and impulsivity may be the most noticeable traits, but the core traits underlying these have to do with our executive functioning system of the brain.

ADHD expert Dr Thomas E Brown divides the executive functions that are impaired in ADHD into the following “clusters:”

Activation: Organizing, prioritizing, and activating to work.
Focus: Focusing, sustaining, and shifting attention to tasks.
Effort: Regulating alertness, sustaining effort, and processing speed.
Emotion: Managing frustration and modulating emotions.
Memory: Utilizing working memory and accessing recall.
Action: Monitoring and self-regulating action.

Challenges with these areas will probably be familiar to autistic readers, even those who aren’t also diagnosed with ADHD. As neurodivergent cousins, we experience quite a bit of overlap in traits.

For example…

We both hyperfocus on what interests us. ADHDers may experience more difficulty concentrating on what doesn’t interest them. Autistics may dive a little deeper into our special interests, and these interests may last a much longer time.

We both have sensory sensitivities. ADHDers are easily distracted by extraneous stimuli that others are able to filter out. Autistic people may or may not be as easily distracted as ADHDers, but depending on whether they are hyposensitive or hypersensitive to a particular sense, they are able to hear or see things that others miss.

We both have challenges with emotional regulation and low frustration tolerance. The underlying reasons may be different. ADHDers dealing with restlessness may have less patience for something aggravating. Autistic people may lash out when experiencing sensory overload.

And we both stim! ADHDers jiggle their legs, twiddle their thumbs, doodle while taking notes, twirl their hair, and are constantly on the move to relieve the tension of hyperactivity. Autistic people stim for a wider variety of reasons, and autistic stimming seems to be a little bit less like “typical” fidgeting (e.g., hand flapping).

There is much more overlap, but when you’re diagnosed with both, it can be hard to separate the two. In fact, I once read that ADHD could be considered part of the autism spectrum given how often they co-exist. Perhaps one day we’ll see ADHD as an autistic “profile.”

Until then, it’s all neurodivergence to me!

Double Standards: ABA vs. Facilitated Communication

This article was originally published at The Aspergian.

There were a couple of things that spurred my dive into research regarding facilitated communication (FC) and other methods of alternative and augmentative communication (AAC). One that I have mentioned before is that I watched a few documentaries featuring autistic people who spell or type to communicate.

Another was that I very quickly learned about applied behaviour analysis (ABA) when I became involved with the autistic community, particularly about its potential for damage to young neurodivergent minds. I immediately thought back to those documentaries I’d seen and I thought to myself, “I bet a lot of these kids with ‘challenging behaviour’ are just frustrated that they can’t communicate with anyone. Why aren’t we pushing communication first?” That’s when I discovered that FC wasn’t considered “evidence-based” and started doing my research.

Critics continue to claim that I believe that FC can be efficacious because I allegedly have no understanding of the science and allegedly refuse to question it. They are wrong. I certainly had a moment of crisis where I considered whether I had been duped into believing something that couldn’t be true. It was through reading both sides that I came to my conclusion. Meanwhile, critics of FC (and of other AAC methods) have simply come up with more complicated “reasoning” as to why it can’t possibly work ever. (See: shifting the goalposts.)

However, there was something peculiar that I noticed throughout my researching. Whenever I argued for the efficacy of certain AAC methods, I would often get criticisms of the evidence that supports it… using arguments that, if applied to ABA, would not hold up at all. This was especially peculiar considering the people who criticize FC usually promote ABA.

Far be it for me to accuse anyone of being an ABA shill, but I do see a pattern of refusing to recognize the potential for efficacy in specific methods of learning while completely ignoring evidence of inefficacy in the one that you do. Let’s go through those together using facilitated communication as an example.

They say FC can only be validated via double-blinded experiments in controlled settings…

The universal way of validating someone’s identity is to ask them questions that someone who isn’t them would not know. We do this all the time when we deal with sensitive information. People who communicate with AAC also pass information that their support people never knew. Ask anyone who personally knows someone who uses AAC, and they can verify this for you.

Critics take the position that the only way to ensure authorship of the words produced through FC is for the method to be validated in double-blinded experiments in controlled settings. It doesn’t matter if you’ve passed information outside of the controlled settings (which has occurred in many qualitative scientific studies); it has to be this method, nothing else.

(Skeptics constantly shift the goalposts for what constitutes proper evidence, though, and I’m sure once there is at least one study available, we’ll be hearing critics saying that one study doesn’t trump the other ones…)

…while ignoring the fact that evidence using the scientific “gold standard” for validating ABA outcomes (randomized controlled trials, or RCTs) is scant.

Meanwhile, when considering the evidence of ABA principles being used to train skills, the “gold standard” of evidence would be via long-term randomized controlled trials. Essentially, autistic children would have to be randomly divided into two groups, one receiving an ABA type of therapy and one receiving a different type (or no therapy at all). The people observing would also have to be unaware of which therapy (or lack thereof) the subjects were receiving, in order to prevent bias in the results.

You might think that, for a field that insists it is evidence-based whenever it receives criticism, there would be a lot of rigorous studies of this kind to back up those claims. However, ABA studies using randomized controlled trials are actually few and far between.

Lovaas’s 1987 study is considered the first of this kind (though the subjects weren’t actually randomly assigned to groups due to parental objections and ethical considerations). Regardless, 47% of the group receiving intensive behavioural therapy “achieved normal intellectual and educational functioning.” This number is often used as the definitive proof that ABA works. I’ll come back to this study later.

There have only been a few studies done since then that qualify. One of the reasons is cost. RCT-type studies are very expensive (in the millions). Another is that ABA is already assumed to be the standard of care for treating autism spectrum disorder and withholding ABA from autistic children is “unethical.” You see the conundrum we’ve found ourselves in here.

A 2009 meta-analysis of applied behavior intervention found inadequate evidence for outcomes. A 2018 Cochrane review found evidence in favour of early intensive behavioural intervention to be “weak.” Behavioural analysts refuted these findings, of course, claiming that the very strict standards left out the vast majority of research supporting positive outcomes for ABA through other experimental methods.

When I make that same argument for FC — that the preponderance of peer-reviewed articles supports valid authorship and that the systematic reviews claiming it as invalid ignore them entirely — I’m called anti-science.

Weird.

They say FC should not be promoted because the potential for abuse is too high…

Whenever FC is brought up, I get bombarded by examples of legal cases in which FC users made abuse allegations or in which their communication method was used to justify murder, in one case.

In the latter case, the woman was convicted of manslaughter for killing her son. I, of course, agree with this ruling. However, the mother in this case also had psychiatric issues and no formal training in FC. In fact, in several of the cases where allegations were made, the facilitator had no formal training.

These are awful situations. I have sympathy for every person who is accused of something they didn’t do. However, false allegations are not unique to FC. Authorship tests were not completed in every one of these cases, but even if authorship had been validated, every person is still capable of lying.

Furthermore, there have been abuse allegations made through FC which were later verified. Downplaying these allegations instead of investigating them would have left the children here much more vulnerable than removing their communication method altogether would have.

As well, the complete denial of any efficacy of FC also results in abuse. Sharisa Kochmeister, a tireless autistic self-advocate and former president of the Autism National Committee, was removed from her family’s care against her will and placed into a group home, despite using her method of communicating (typing with one finger) to ask for a lawyer.

But of course, critics aren’t interested in cases like hers. As I have said before, when people talk about protecting nonspeakers from “abuse,” they are more concerned with what nonspeakers might say about others than they are with the right to communicate.

…while ignoring the fact that ABA-type methods have been linked to both physical and psychological abuse.

Flipping back to ABA and the double standards applied, there is plenty of evidence of abuse in ABA-type methods. Physical abuse occurs through the use of aversives, and psychological abuse occurs through long-term use of ABA-style intensive “therapy,” which is what most autistic children are “prescribed” as the standard of care.

Among advocates, the most well-known use of aversives as physical abuse is at the Judge Rotenberg Center. Purportedly, the JRC is one of the only institutions to still use aversives as part of behavioural therapy, and one of the only ones still using electric shocks as a form of behaviour modification. By human rights standards, it qualifies as torture.

Despite the assertion from behavioural therapists that aversives are no longer in use with modern ABA, the JRC has continued to have a presence at the Association for Behavior Analysis International’s annual convention. This year’s materials included several discussions on the alleged merits of skin shock as punishment.

As for psychological abuse in ABA, I personally wrote an article about it, so I won’t rehash it here. This article in Cogent Psychology was my main source of inspiration.

Interestingly, nonspeakers who later learned to type or spell to communicate have voiced their thoughts on ABA and how it was pretty much useless for them. I can’t help but wonder if the pattern of nonspeakers against ABA is one of the reasons ABA proponents are unwilling to accept alternative communication methods as valid.

They downplay testimonials from the thousands of parents who recognize their child’s authentic communication…

United for Communication Choice has estimated via informal polling that there are about 5,000 children in the United States who communicate by typing or pointing to letterboards. That’s thousands of parents seeing their nonspeaking (or partially speaking) children improving literacy skills and motor functioning, and plenty of anecdotal evidence for validated authorship.

According to these critics, these parents are victims of emotional manipulation and false advertising on the part of those promoting FC, RPM, or another method. It’s that whole condescending “Of course, parents want to believe their kids are talking to them, but I, a person who has never met those kids, know better.”

…while claiming that testimonials from the thousands of parents who are convinced that ABA helped their kids develop are valid evidence of its efficacy.

It doesn’t matter how many times autistic adults write about how ABA has been damaging to their psyche. Proponents are still going to point at the parents who support it for their children as proof that it works (again, without any studies comparing development with ABA treatment to development with no treatment, or recognition that some studies have found that the number of hours has no relation to diagnostic outcome.)

Have I mentioned that there isn’t any evidence regarding the psychological well-being of autistic children exposed to long-term ABA? Most, if not all, of the evidence is based on parental reporting and observations of behaviour. They report on whether behaviours changed or not. They don’t report on whether or not the child’s psychological well-being has improved. I wonder why that is.

Remember when I said I would come back to Lovaas? The 47% number was achieved with the use of aversives as punishment, and Lovaas credited aversives with the achievement. Any use of that number as proof for the efficacy of “modern” ABA (which I am told does not use aversives) is actual false advertising.

I keep hearing from local people that ABA in my area can cost up to $80,000 a year. $80,000 a year for a “therapy” which could potentially be physically abusive and is almost certainly psychologically abusive (and particularly so for nonspeaking children). It would take me four years to make that much money! I can’t imagine the kind of debt some parents must have gone into because these so-called experts claimed that their children would never reach certain developmental milestones if they aren’t immediately put into intensive one-on-one behavioural therapy.

And where’s the evidence supporting that? Oh, right, it would be unethical to deprive autistic children of ABA to test for that evidence. How convenient.

Is there some kind of agenda at play? It’s hard to say for sure.

Ultimately, though, when you compare between these two methods of teaching (and this is, in fact, what they both are), I have a few things to note…

ABA methods…

measure intelligence by observations of behaviour
no presumption of competence is made
consider movements and ability to make speech as reflections of intelligence
have minimal understanding of autism (no specialization required to become an RBT, for example) or base it on the outdated classification as a behavioural disorder
often disregard research regarding motor functioning and sensory differences
foster dependence (creating an over-reliance on prompting and external rewards)
social relatedness is downplayed; one must perform socially acceptable behaviours to be accepted, often without understanding of those behaviours

Spelling and typing methods…

measure intelligence by helping them communicate their thoughts and desires in methods suited to their needs
presumption of competence is made
consider movements and ability to make speech in the context of someone who may not have reliable control over motor functioning
recognition of motor functioning and sensory differences experienced by autistics and confirmed by recent research
foster independence (fading of prompts is an essential part of RPM and other spelling methods; unsupported typing is the end goal for FC users, when possible)
social relatedness is encouraged; one can use their individual method of communication to socialize with and understand others

Between ABA-type “therapies” and FC training, both methods do poorly in terms of evidence when they’re held to “gold standard” testing, and both methods rely strongly on anecdotal and individualized evidence for efficacy. But only one of the two is widely denounced as “pseudoscience.”

Among autistic self-advocacy groups and individual activists, ABA is almost universally condemned, while communication methods are encouraged. Among those who recognize the value of neurodivergent brains, ABA is unethical and damages intrinsic motivation, but communication methods, while still not fully reliable sometimes, represent the chance for autonomy and acceptance of differences. Among nonspeakers, ABA is useless, and real communication is freedom.

One of the assertions made by ABA proponents is that those of us who are opposed to behaviourist principles in teaching autistic children are “high-functioning” and that ABA is most helpful for “low-functioning” autistics. Yet, when someone whose primary communication method is through typing or spelling says that ABA did nothing for them, they are silenced, ignored, or otherwise condescended to, by being told their words actually came from someone else.

Again… how convenient.

Editor’s Note: In creating this article, I referenced quite a bit of information compiled by autistic researcher Michelle Dawson, and I would be remiss if I didn’t give her credit for all of the excellent work she has done, particularly in ethical violations surrounding behavioural therapy.

Logical Fallacies in the Facilitated Communication Debate

This article was originally published at The Aspergian.

I recently published an article about the erasure from Wikipedia of autistic people who use or have used facilitated communication. The response has been overwhelmingly positive, but there have been a few persistent arguments that violate the principles of argumentation as they are taught in critical thinking courses in university.

In particular, I want to address some of the logical fallacies people fall back on when the topic of facilitated communication comes up.

Logical fallacies are errors in reasoning. Some of these incidents of faulty reasoning occur so often that they have been given names (e.g., “straw man,” “ad hominem,” “red herring,” etc.)

In order to address these in a critical sense, I need to first be quite clear about what my arguments actually are, because those themselves keep getting twisted by critics. And since I’ve been criticized for not including in-text citations by those who don’t want to click links to find information, I’ll even include them.

First argument: We should presume competence of non-speaking people.

Current tests of intelligence require someone to speak and move reliably. (source) Competence of non-speakers, who often also have motor difficulties, cannot be judged by these standards. (source)
The part of the brain which controls the ability to speak and the part of the brain which processes language are not the same. The Broca area is responsible for forming and producing speech (source), and the Wernicke area is responsible for language comprehension (source).
Research indicates autism may, in fact, be characterized by motor and sensory challenges (source); the intelligence of autistic people has been underestimated under previous understandings of autism. (source)
None of the conditions that may result in being unable to produce speech necessarily include intellectual disability. (source, for ASD)

Second argument: There is no scientific consensus on FC or RPM (or: FC and RPM have not been debunked or proven pseudoscientific.)

There have been studies conducted where the evidence has failed to support authentic communication. (source)
1. Researchers have attributed the failure and evidence of facilitator influence to the ideomotor phenomenon. (source)
There have been studies conducted where the evidence has supported authentic communication. (source, source)
1. Researchers have used linguistic analysis (source), eye tracking (source), development and use of verbal speech while typing (source), and successful message-passing (source) to verify this.
2. Further, there are many who have used FC and RPM to develop their motor functioning enough to graduate to independent typing or pointing (source).

With these facts in mind, I encouraged activists and advocates not to dismiss these methods of communication out of hand, as doing so would contribute to the erasure and silencing of our non-speaking autistic siblings.

Though my article was mostly well-received, it did attract a few critics. None of them have presented an actual counter-argument yet. Many have made use of logical fallacies, and I’d like to address them for the benefit of others who might encounter them.

Straw Men

A straw man argument occurs when the original argument is misrepresented, making it easier to defeat. The major straw man fallacy I have encountered is the interpretation of my argument as a black-and-white, shut-and-close opinion.

“You unquestioningly believe that FC and RPM work.”

I provided a lot of information in the previous article. I didn’t come to my conclusion without questioning it, doing the research, and reading about the methods. I definitely expect people to question a method that has been the subject of controversy. That’s why I included so many links to articles and studies.

I mentioned that FC users have spoken about facilitator influence that they have experienced. I mentioned that FC and RPM are still developing best practices for use. I mentioned that information with significant consequences should be verified. I think I’ve been quite clear that I think the methods can be unreliable. Even spoken words from people with apraxia of speech may also be unreliable and should be verified with them.

Yes, they work. The problem comes when you assume that “they work” means “they are 100% effective 100% of the time.” You won’t find me saying or implying that, but you’ll definitely find people claiming that I did.

Red Herrings

Red herring fallacies are distraction tactics, and a lot of different fallacies can be covered under them. Most of the ones directed at me have been appeals to irrelevant information.

Appeal to Emotion

An appeal to emotion is a fallacy in which emotionally-laden words and arguments are used as reasoning. Despite outlining the reasons for my argument quite clearly, I was accused of making a “feelings-based” argument in the comments of the previous article. This was particularly interesting because the counter-arguments that same person presented were “feelings-based” appeals to emotion.

“FC has been used to justify abuse and murder.”

True. However, these cases are rare and having been used to justify abuse and murder doesn’t negate evidence of authentic authorship. That’s why I didn’t mention it in my article.

Further, FC has also been used to validate allegations of abuse (source). I’m of the opinion that removing someone’s method of communication because they might accuse someone of abuse is inhumane. It’s not a decision made to protect the person communicating; it’s a decision made to protect everyone else. False allegations are not specific to FC. Using abuse allegations as a counter-argument is not a reason to prevent others from accessing it.

Use of loaded language

Both sides in a debate will likely use loaded language to sway others to their position. I certainly do, but I also don’t use it as my main argument. Critics believe that they are defending those who would use FC or RPM from being “exploited” or having their voices “stolen.”

I have heard comparisons made to “puppets” with their “strings” being controlled by facilitators. I have seen FC compared to identity fraud, etc. These comparisons may sway opinion, but ultimately they fail to negate evidence of valid communication.

Appeal to Authority

An appeal to authority is when someone points to specific authorities on a matter as proof. This happened a lot when I was on Wikipedia. I kept getting directed to mainstream media articles in which scientists said things like, “Everyone in the scientific community knows FC is debunked!” These were used as “proof” that there was a scientific consensus.

Yet, the fact still remained that there were many articles detailing evidence that supported valid authorship. Clearly, the evidence is conflicting. Why would I take random scientists’ and skeptics’ opinions of FC over the studies themselves? I stuck to the conclusion that there is no consensus.

Appeal to Popularity

An appeal to popularity is a fallacy in which an idea being popular is taken as proof that it must be true. A response to my article suggested Googling facilitated communication to see how widespread the claim of it being debunked is. Something being a widely-held belief does not negate evidence of authentic authorship.

Every new idea was once treated in the way that facilitated communication was. It’s not a logical argument for or against the practice.

Shifting Goalposts

Shifting the goalposts is less of a logical fallacy and more of a logical bias and often proof of a bad faith argument. It refers to changing the criteria for truth once the previous criteria have been met.

Within FC, I have experienced it like this:
“You need evidence” ->
“You need evidence in a peer-reviewed academic journal” ->
“You need quantitative evidence in a peer-reviewed academic journal” ->
“You need quantitative evidence in a peer-reviewed academic journal that has been Medline indexed.”

FC users themselves have also been subject to shifting goalposts:

“Your words are not authentic… if someone is holding your hand” ->
“if someone is holding your arm” ->
“if someone is touching you at all” ->
“if someone is in the room with you” ->
“if you ever used FC/RPM in the past.”

This final goalpost is why typists like Sue Rubin (and now Lucy Blackman) have been erased from Wikipedia despite the fact that they are both capable of communicating without a support person touching them (source and source); even being able to independently type is questionable to critics.

When the ideomotor effect no longer explains how non-speakers are capable of writing, opponents of FC go on to claim that non-speakers are being “subtly cued” to know what to type.

There’s absolutely no evidence for this, but people are so willing to cling to the belief that non-speakers can’t produce cohesive language that they’ve come up with new ways of discrediting them. This is particularly why competence is part of my argument.

Arguments From Analogy

When arguing from analogy, the stronger the similarities between the two things you are comparing, the stronger the argument. A logical fallacy occurs when the analogy is too weak. When discussing FC and RPM, people have tried to draw analogies with channelling, mediumship, automatic writing, ufology, cryptozoology, etc.

Anything that is considered pseudoscience is up for comparison.

These people fail to take into account that we are talking about a human being who is visible. Comparisons to people claiming to receive information from invisible beings are not relevant. Comparisons to unidentified flying objects are not relevant. Comparisons to Bigfoot are not relevant.

They are brought up to try and discredit the argument further, but they contribute nothing in terms of sound reasoning.

In conclusion…

Critics will surely continue to move the goalposts, but I’ve outlined my argument and supporting premises quite clearly.

Let’s stick to the facts from here on out.