End Bullying in Autistic Advocacy: No One is Disposable

As a person who has been affected by bullying from autistic “leaders”, I feel the need to share my thoughts on this subject as I am seeing it frequently on social media recently.

The elitism and silencing tactics that advocates are experiencing from “leaders” in the UK is also present in North America. The ostracism of other advocates, the public shaming, the gaslighting, the DARVO tactics, the boycott lists, letting your personal issues affect the world of advocacy — they all have to stop now.

I am no longer accepting punitive justice from autistic leaders as a means of controlling my behaviour.

Specifically, I will not collaborate with people who participate in disposability culture (also called “cancel culture”).

When I say I am opposed to cancel culture, what I mean is that I specifically oppose a culture that makes demands for ideological purity (e.g., only specific ideas and language are “correct”), publicly shames anyone who does not meet their standards, and then either (a) ostracises them by harassing them any time they do anything from that point forward or (b) ostracises them by also ostracising anyone who continues to work with them.

Leadership in autistic-led groups in both America and Canada did this to NeuroClastic/The Aspergian.

I’ve written private entries about this topic so many times, but what it comes down to is this. The situation ultimately was not about whether The Aspergian was an appropriate name or not. There was no “correct” answer. The answer is as complex as every individual’s personal relationship to the word “Asperger’s.”

It was about the fact that people used their positions of influence to enforce their personal ideologies on other activists. It’s elitism. It’s believing that your personal experiences and moral judgements are more valuable than the personal experiences and moral judgements of everyone else.

Specifically, autistic leaders acted as if their personal values overrode the 200+ autistic contributors to The Aspergian and decided that they would refuse to support the website. None of our autistic “leaders” are elected, however. They are all in their positions by opportunity and privilege. In other words, they may be respected for their work, but they are obligated to listen to the whole community, not just the people they agree with.

The claim made was that the name was doing “harm” (by recalling the actions of an ableist “loud minority” whose ideals were not reflected in the content of our site at all).

It’s certainly within an individual’s personal agency to refuse to share from the site. However, it wasn’t just that. The fact that we had apparently committed a moral transgression with the site name also meant that we were labelled “bad.” In many social justice spaces these days, once someone is labelled “bad,” everyone else is suddenly allowed to be as cruel as necessary to get them to shut up.

And that’s what I oppose about cancel culture.

With regard to The Aspergian, people spread false rumours about the site, lied about specific events, misinterpreted situations, jumped to conclusions, etc., and because the site was already “bad,” it meant that no one really cared about checking their sources. Anything else “bad” that we did was automatically believable.

When I came to an executive member from the autistic-led group I was personally a part of, to speak to them about their refusal to share any links from the site, they also deemed me “bad” and completely dismissed my input as irrelevant (even though I was being polite).

When I spoke to another executive member about this later on, he insulted me for hours while I tried to explain my side of the story, and after I gave up, he harassed me until I blocked him.

When I tried to talk to a different autistic-led group about the behaviour of the leadership in this group, they ignored me. I saw Facebook post where this group had said they asked a leader step down for acting in harmful ways, but that they believed that even harmers should remain part of a community. These are transformative justice values (and I agree with them). But in my experience, it looks like transformative justice only applies to harmers they like. If you’ve been deemed “bad,” punitive justice will do just fine.

So, again, if it was an individual person making the decision not to support the site, this would be an argument of personal agency. But it wasn’t. We were treated like we were disposable.

And we were treated like we were disposable by other autistic people. These are advocates who talk about trauma constantly! But if you’re a “bad” person? Then acting in ways that are abusive are perfectly fine. Damaging reputations? Sure. Gaslighting? Go right ahead. Withdrawing support? Totally fine. Giving them the silent treatment? It’s all for the greater good. They just got what they deserved, right?

The psychological damage that has been done to me by activists whose sole advocacy-based disagreement with me is over the name “The Aspergian” exceeds any harm that has been done by allies who made a mistake by using puzzle piece imagery or using a functioning label.

I am not part of “the Autistic community” because there is no such thing. There are only different cliques of Autistic people, one of which spans many of the positions of influence in autistic self-advocacy. It’s disingenuous to claim that “the Autistic community” wants or needs anything because we aren’t a monolith. We don’t all agree with each other.

Mainstream autistic self-advocacy is traumatizing many activists because our leaders and influencers do not model trauma-informed conflict resolution. I choose not to collaborate with any group that isn’t committed to doing so.

I will certainly collaborate with individual people who are committed to trauma-informed conflict resolution, though, regardless of who they are affiliated with. I have learned that it is less important to me that people I interact with have the exact same views as me and more important that we are able to communicate in a clear, honest, emotionally mature manner.

I’ve noticed that, whenever I just do what I do best, the right people seem to show up.

I will no longer be begging people to acknowledge my worth, exactly as I am, flaws and all.

I will just keep collaborating with the people who do.

To be clear, I am calling on all autistic-led groups to commit to trauma-informed conflict resolution (between their own members, between other advocates, and between other groups).

This is not a declaration of war; it is a request for a ceasefire. But if you continue to treat me like your enemy, you have made it clear to me that you are a person who wants power, not a person who wants to build community and create a better world for autistic people.

—-

My last article about this subject:

Why am I so tired?

Today has been one of those days where I can barely force myself to make myself eat. (In fact, I ordered in breakfast.)

Yesterday felt like that, too. And the day before that. And all this week, really.

I had one thing I had to make sure I did this week, which was to attend an online conference, and I am happy that I made myself do that.

The rest of the week I spent trying (and failing) not to sleep at weird times. But I still slept for large portions of a couple of days this week.

I don’t know.

About a month ago, I stopped taking the antidepressants I’d been on for the last year or so (Effexor). I haven’t been completely off antidepressants for probably a few years. I try every once in a while; in the past, I’ve crashed hard and forced myself back on medication in order to feel stable.

I think differently these days than I used to. I’m not prone to a lot of the traps my brain would set off when I was upset about something.

Right after I went off the meds, I was hyper(?) or manic(?) maybe(?)… at any rate, I slept very little, woke up early, and spent a lot of time frantically researching and writing.

I wrote a bunch of emails. I got caught up with life. I was just on top of everything.

Then, about a week and a half ago, I was confronted with yet another chapter in a long saga of being gaslit by autistic “leaders.” I had the panic attack. I had the walk. I thought about how I wanted to respond. I wrote things. I deleted things. And ultimately, I just decided I wanted to forget about it.

And that was fine, but it’s thrown me off. Now I’m sleeping all the time instead. I just watch TV, and I don’t even really want to watch TV, but I also don’t really want to do anything else either.

My body feels like I’m carrying invisible weight. I don’t want to be awake. I just want to sleep instead, until I reach a point where I’m interested in things again.

But honestly, WHY?

Is it because I’m autistic and I just did too much too fast?

Is it because I’m having a depressive episode?

Is it because I have poor nutrition habits so my body is just unhealthy?

Or is there some other random reason that I’m chronically exhausted?

blegh.

A Reflection on Motor

Editor’s Note: I wrote this blog post back in February, tucked it away, and never posted it publicly. I was reminded of it recently while reading my friend Damon’s recent post about his experiences with apraxia. I’m posting it now as both a statement of solidarity to my nonspeaking friends and to encourage fellow neurodiversity advocates to keep motor challenges as much a part of the conversation as other neurological differences.

The advocacy niche that decided to adopt me is extremely specific, but I feel like I fit there. I am part ally and part insider, an autistic with fluent speech among nonspeaking advocates. This niche is theirs, but they have kindly invited me in.

I recently drafted a blog post about the responsibilities of being an ally to nonspeakers. I fussed about the words I was using often. I never want to sound like I’m centring myself in a movement that is meant to centre others. I think I’m doing okay, but then I worry that posts like this one might toe the line too much…

…but it’s impossible to not talk about my neurosiblings. There’s something essential that we share, and our unfortunate communication barrier has kept us from exploring it together. And I know that, because my experiences intersect with nonspeaking autistics just as they intersect with speaking autistics. I feel the same connection of “me too!” when I read their work.

That has led me to think more critically about the parts that we don’t seem to share, and it turns out that much seem to only be different on the surface.

One of the core struggles for nonspeaking autistic people deals with motor planning. I’ve read many nonspeakers referring to this as a “brain-body disconnect.” Essentially, the body doesn’t reliably follow instructions from the brain. I don’t think I experience a disconnect… but I do experience what could be characterized as blips? Or brownouts?

It feels like I’ve stopped knowing what to do in the middle of doing it. I’ll be walking, and if I’m not paying attention to what I’m doing (like if I’m talking to someone else), my ankle will roll, I won’t pick my foot up high enough, or I’ll just step down the wrong way.

When walking around indoors, I am likely to bang into counters, tables, and doorways. Sometimes I just lose my balance a bit and sometimes I just didn’t walk straight for some reason.

I move faster than I mean to. I throw things out of my hands by accident because my grip isn’t tight enough. I spill things. And I am indeed that person who has dropped their phone on their face while in bed. Many times.

I am able to speak, but I have a lisp. (My tongue is in the “wrong” place when I pronounce the “s” sound.) I tumble over words, and I don’t have enough time to think about what I want to say. If I am speaking, it’s harder to do literally anything else. It’s an energy drain. I relate in that sense.

I become unable to speak, but only temporarily. What it feels like when I can’t speak depends on the context. When I am just waking up or just falling asleep, it is hard to speak. I feel like my face is heavy and my jaw is locked. I don’t want to move, either, because being completely still is currently perfect.

When I’m having a meltdown, I can’t stop crying. I hated being told to “use your words” as a child in distress, because it only deepened whatever frustration I was feeling in that moment. I was able to think them, but they wouldn’t come out of my mouth.

I have had many situations where my emotions have shut me down completely, where someone might be asking me what’s wrong, and I want to say something. My brain screams words, but nothing happens.

There is a narrative thrown about that non- and minimally speaking autists are fundamentally different from speaking autists, but I find that the more I understand their experiences, the more I understand my own.

The fact that we are all so likely to have a relative with autism if we are autistic ourselves means something. Speaking autistics regularly have nonspeaking children, siblings, and other relatives. We may seem different to outsiders, but there is no separating us. Our similarities are obviously from the same genes.

Where else do our similarities lie?

Thirty Two

What is the essential part of me?
What am I synonymous with?
What am I the epitome of?

I am a quiet baby who rarely cries.

I am colours in motion on the wheel of fortune®.
I am tiny red berries in my neighbour’s front yard.

I am the natural conclusion of a satisfying task.
I am the crackling sparks of one unexpectedly unplugged.

I am a precocious child brimming with nervous energy.

I am crisp white paper, folded and stapled.
I am persistent ideas with a false urgency.
I am a tangle of stories which must be told.

I am an air of haughtiness lined with good intentions.
I am smart and should have known better.
I am the anxiety of not knowing the answer.

I am a boy-ish girl in sweatpants, shirts, and shorts.

I am struggling to make friends.
Then, I am struggling to keep friends.

I am “four eyes.”
I am “ugly.”
I am “gross.”

I am gullible.
I am wary.
I am easy to provoke.
I am easy to ignore.

I am a perfectionist because I have to be.
I am loud until the only option is to be quiet.

I am a spindly pre-teen with my sleeve between my teeth.

I am digital dissociation.
Or I am childhood depression.

I am a hostage of my emotions.

I am a locked volume dial.
I am an explosion of tears.
I am the volcano boiling under my skin.
I am the lava running down my arm.

I am a clumsy teenager who is desperate for connection.

I am shared awkwardness.
I am unbridled enthusiasm.
I am purple silk.

I am exploited naivete.
I am resigned compliance.
I am torn fabric.

I am confused and young and cornered.
Then, I am older and tired and know better.

I am an annoying friend who is terrified of being left behind.

I am unsure of my place in the world.
I am starting to realize that I need help.
I am the first step of a long journey.

I am a girl-ish boy in plaid button-downs and jeans.

I am a student of machine shorthand stenography.
I am a college diploma holder.

I am consistently inconsistent and still struggling.

I am not what people expect me to be.
But I am not sure what people expect me to be.

I am an indifferent lover who is easily replaced.
Or I am hardly a lover at all.

I am a burnout.

I am burned out.

I am the clouds that keep me company.
I am the connections made through disconnection.
I am the grounding force for the tornado above.
Or I am on tiptoes.

I am glowing embers of fires once burning.
I am ferocious flames that swallow what remains.

I am a connoisseur of boundaries.
I am a lifelong lover of language and lingo.

I am critical thought.
I am incessant grace.

I am justice and fury and takedowns.
I am passion and reaction and meltdowns.

I am honest.
I am loyal.
I am trying.

I am a secret idealist with imagination trapped somewhere inside.
I am a perpetual seeker of knowledge in pyjama pants at lecture.

I am an organized mess of a human, born 32 years ago.

Solitude

There were two main periods of my life where I felt the deep pain of being alone.

The first was my being ostracized throughout most of my elementary years, from grades three to eight. I moved from a different school where I had established friendships. I literally didn’t recover until high school when an established friend and I reunited.

In elementary, I sometimes was able to keep friendships with “new” students, but as they developed more friendships, they realized that I generally wasn’t welcome, and eventually didn’t feel I was worth bothering to defend.

I had no diagnosis back then, but kids don’t need someone’s diagnosis to tell when that person is “different.”

The second was just after high school and was slightly different. I moved out west to live with my partner of the time. They were very jealous and controlling, and it was difficult to make friends while walking on eggshells.

Again, I was isolated. It was different because I had chosen it at first, but both events were similar in that the people involved used me in abusive ways. They each made me feel like I had no other choice, that I was stuck, and that I didn’t deserve better.


I feel alone lately, but it’s neither good nor bad.

A few years ago, I moved out of the city, because it was becoming too hard to afford it alone. On the heels of making that decision, I became single. And later, slowly, almost all of the rest of my close relationships disintegrated as well.

I’ve never fully recovered from that. I don’t make ‘real life’ friends very well, and I never have.

And everything is too much now, anyways. I’m barely able to put anything into the friendships I have been able to maintain. 

I’ve been alone for a week now, but it’s neither good nor bad.

It’s just normal.


I’m tired, and some days I feel like there is nothing to life beyond working and exhaustion.

The government says I don’t fit their definition of “a person with a disability.” 

I think: do people *without* disabilities usually spend their entire spring break in bed? 

I keep saying that I’m fine, because my mood is okay. But antidepressants have not cured my fatigue. 

I’m tired, and if work and exhaustion are the only two components of life that I’m allowed to have, what even is the point? 


Anyways, I’m okay. 

I’m worried about the hearing (re: disability status) ruling against me.

I’m worried about ever getting out of debt if I can’t force myself to “try harder.”

I want to do a lot of things that I should have finished already.

I feel like a failure more often than I admit to. 

And I think I need a massage. But I’m okay. 


It’s a paradox. People drive me crazy, but I don’t like being alone.

New Year’s Reflections and Resolutions

Happy 2020!

It was almost a year ago that I opened my Twitter account and waded into the world of autistic advocacy. I have learned so much since that time.

I’ve interacted with people of all kinds…

…autistic people who want to be treated and cured… and autistic people who want to be accommodated and celebrated…

…parents who are fighting governments to have behavioural therapy covered by insurance… and parents who are fighting the school system to have their children included in ‘mainstream’ classrooms…

…professionals who condescend to autistic people by downplaying self-advocates as ignorant and naive… and professionals who empower autistic people by listening and learning to self-advocates…

If there is one thing I’ve learned, it’s that there isn’t really a black-and-white dichotomy between “good” people and “bad” people.

In some cases, it can be very obvious, but in others, there’s more of a grey area. And while I’m certainly guilty of black-and-white thinking, I’ve always had an eclectic sort of attitude towards most ideas. “Take what you like and leave the rest.”

(Apparently this is a common saying in Alcoholics Anonymous, but it should be part of everyone’s attitude when doing work in self-improvement. Don’t force yourself to like ideas that don’t jive with you personally, but certainly don’t feel bad about adopting the ones that do.)

To my wonderful allies…

I remember starting out last year feeling like there was a very hard line between autistic self-advocates and “autism parents” (as well as professionals).

I want to extend massive amounts of gratitude to the parents of autistic people that I have met since then who let me into their lives, either on Facebook or in person. I also want to extend gratitude to all of the professionals that I have gotten to speak with.

As it turns out, there are thousands of (non-autistic) parents and professionals out there who are amazing allies, and some are doing groundbreaking work in publishing narratives, in doing research, and just in listening to autistic people.

It’s very encouraging!

For those who have opened up to me, I have this to say: I can’t promise that I’ll never let you down. I’m a human being, and there’s always the chance I’m going to say something wrong or have a bad day.

I can promise that you have my loyalty (and my good intentions, even though they sometimes steer me wrong). As long as you’re with us, I’m with you. All movements need allies. Allies who know when to stand up, when to take direction, and when to pass the microphone are a welcome and necessary part of my community.

To my wonderful neurosiblings…

I’ve met so many of you online, and I’ve had the great pleasure of meeting some in person.

We’re all so different. Our needs are different. Our language is different. Our experiences are different.

We disagree on a lot of things. Most of us aren’t influenced by the idea of conforming to avoid conflict, so it doesn’t surprise me that we have conflict almost constantly.

That said, I’ll move away from advocacy as a broad thing and just talk about personal interactions.

I want to extend massive gratitude to the autistic people who have given me platforms to talk about important issues, who have discussed differing ideas with me and stayed open, who have been honest and authentic with me in their interactions, who have validated my life’s experiences with their writing…

…and who have simply just become my friends.

It’s been years since I made more than a couple of new friends (even online). Last year, I made dozens.

Thank you.

To my unknown future…

I change my mind about what I want to do with my life a lot.

Being part of this community has felt right. I don’t know where I’m ultimately going to end up, but it’s going to involve serving and advocating for disabled people — my people.

Something about the past year, interacting with non-autistic parents and autistic parents and autistic kids and teenagers, has changed my mind about something I’ve gone back and forth on for a long time, which is that I think I would like to be a parent.

I know soooo much now. I feel like that knowledge should go to good use. I think I have positive values. I think I’ve learned a lot of coping skills. I think I could be a good role model. I think I could be a good parent.

I can’t have children, though, so it’s a long road ahead if I want to take it (donors and surrogacy and adoption, oh my)… and there are some things I want to do before I become a parent, like finish university.

In the meantime, the idea provides a bit of motivation to me that I’ve been needing. If I want to be a good parent, I need to be able to take care of myself better. If I can take care of myself better, I can take care of someone else better.

I learned this through through activism. Activism generally involves caring a lot about other people, and activists will often overdo it, pushing themselves way too hard. What every activist needs to know is that if you want to fight to the best of your ability, you need to take really good care of yourself.

So that’s my new year’s resolution in a nutshell… take care of myself better, so I can take care of everyone else better.

So far it includes learning how to cook and being more consistent with hygiene and exercise. Those things all need specific definitions and goals, or they’ll mean nothing, so I’ll narrow it down in future posts!

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:”

  1. Activation: Organizing, prioritizing, and activating to work.
  2. Focus: Focusing, sustaining, and shifting attention to tasks.
  3. Effort: Regulating alertness, sustaining effort, and processing speed.
  4. Emotion: Managing frustration and modulating emotions.
  5. Memory: Utilizing working memory and accessing recall.
  6. 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!

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.

Autistic Solidarity: A Personal Reflection

This article was originally published at The Aspergian.

I started to write this article after I wrote my poem, Unmasking as Autistic Pride, but I put it on hold when a special interest took over. I want to come back to it now.

When I wrote Unmasking, I wanted to make sure that it included all autistic people. There are a few lines about talking, but ultimately, to me, unmasking is about letting my body do what it wants.

Many autistic people, though, have a body that will sometimes compulsively act on its own accord. Many autistic brains tend to be not-so-great at executive functions that plan movement.

I only experience this to a tiny degree comparatively: I don’t lift my feet high enough when I walk and can trip over seemingly nothing.

I’ll be looking where I’m going, but not realize that part of my body is still going to hit something. I don’t have a firm grasp, and things fall out of my hands if I’m concentrating on something else. However, I can stop myself from stimming if I want to.

I can also use my vocal cords, lips, tongue, and teeth to speak. Many autistic people can’t do these things with reliability. I don’t support the use of functioning labels, but it does no one any good to deny having what Mayer Shevin called “fluency privilege.” Instead, I try to recognize where I have advantages that others do not; and when people talk about how they have been discriminated against in a way that I don’t experience, I try to listen.

I digress.

To me, unmasking is becoming “visibly autistic.” I wear ear defenders and sunglasses outside now. I don’t stop myself from stimming if I need to. I try not to worry too much over whether or not I said the right things, used the right tone, or made the right face.

To me, pride is acceptance. People will like me, or they won’t. People will understand me, or they won’t. And that’s okay.

It’s okay, because there are people out there who do like me. There are people out there who do understand me. And many of them are autistic or neurodivergent themselves.

When I’m trying to let go, I think of those people. My people. I think about the others in the world who haven’t been able to accept and embrace themselves as easily, who have a much more difficult time with interactions than I do, who aren’t as fluently-speaking as me, whose bodies move in different ways.

I unmask not just for me, but for others, so that others see someone who is like them, and then maybe they might feel a little bit better about who they are.

When I wrote the line, “I don’t owe the world,” what I meant was that I don’t have to pretend to be normal just for the sake of fitting in. I don’t owe the world a sanitized version of myself that can be deemed acceptable.

If you exist in public while the world is trying to erase you from existence, you are revolutionary. You’re changing the world just by being here, and I am so proud of you.

You should be proud of you, too.

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.