Tag: autistic

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?

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.

On ABA Therapy, Self-Determination, & Healthy Psychological Development

This article was originally published at The Aspergian.

Before I came to my identity as an autistic person, I had a short-lived obsession with self-determination theory (SDT), a framework for characterizing the processes which foster or inhibit healthy motivation and psychological development. I’m still very curious about SDT, and I have drawn correlations between the findings of motivation research and behavioural therapy before.

So you can imagine how pleased I was to see the originators of SDT cited in a recent article which drew the same conclusion many autistic self-advocates realized years ago: long-term ABA is abuse.

It’s a very brief mention:

Detrimental effects are noted after the introduction of a reward such as reduced motivation, reduced intrinsic interest, and reduced performance quality in both typical and non-typical children. Additionally, the reward-expectation even lingers after changing the target task and the environment, indicating that the only thing that is being generalized is low motivation and the need for rewards (Deci, 1971; Deci, Koestner, & Ryan, 1999; Lepper et al., 1973; Wiechman & Gurland, 2009).

Self-determination theory came about as a result of research conducted by Edward L. Deci and, later, Richard Ryan. Through experiments, they proved that extrinsic motivators actually make people less likely to perform quality work and create reliance on extrinsic motivators.

They also concluded that people are intrinsically motivated by three psychological needs: autonomy, competence, and relatedness. They call these factors innate and universal, and they play an important role in our mental well-being.

Autonomy

Autonomy refers to the ability to make choices independently (with informed consent and without coercion). Children undergoing ABA-style “therapy” are not making the autonomous choice to do so, and this may be the main reason it causes post-traumatic stress in so many of its survivors. Repeatedly experiencing something you don’t want and having no way to stop it leads to learned helplessness.

I am often told that kids aren’t forced to do anything in their version of ABA. However, I must remind everyone that we are talking about children (with neurodevelopmental delays, no less!) They don’t have enough life experience to make informed decisions about therapy. They aren’t allowed to opt out. They usually don’t even get to choose their own goals.

Sure, kids might enjoy sessions for whatever treats they get as positive reinforcement, but they enjoy the treat, not the session.  The most dangerous abuse is the abuse that happens when people are unaware they’re being abused.

If I may digress, I recall an instance in which someone defended their use of a choke chain for their dog by saying that their dog gets excited and happy when they see it, so it clearly couldn’t be hurting him. That’s a false equivalence. The dog was excited because he was going for a walk, not because he loves the choke chain.

All people are motivated by autonomy, but I suspect this is even more true for autistic people. We even share the same etymology with it: “auto” is Greek for “self.”  We are often seen swimming against the tide while everyone else wonders why.

I’ve heard people claim that Greta Thunberg is being paid for her activism or that her parents forced her into it. Nah, she’s just convinced by what she has read on her own and wants to fight for the future. She’s exercising her autonomy as a citizen of the world. No extrinsic motivation necessary!

A young woman holding up a sign that says We Don't Have Time.

Competence

Competence refers to the ability to feel effective and recognized for what you do. When you are told to “presume competence” when dealing with autistic people, it’s because all people do best when our abilities are recognized. Since I can’t phrase it any better than this article at Very Well Mind puts it, allow me to quote directly:

Competence is increased when one is given opportunities to exercise their skills in challenges that are optimally matched to their abilities. If tasks are too hard or too easy, feelings of competence will decrease.

ABA often fails in this regard, and non-speakers who have later found a means of communication frequently point out how their competence has been undermined by it. A specific and powerful quote from Ido Kedar comes to my mind when I think about ABA and competence. He says the following in his blog post, Motor Difficulties in Severe Autism:

[My instructors] thought they were collecting data on my receptive understanding of language. They were not. I understood everything, as any other child my age would. The data they were collecting, though they did not know it, actually measured my poor ability at that time to get my hand to touch with accuracy the card I wanted, and did not reflect an accurate measure of how much I understood. My mind might be screaming, “Touch tree! Don’t touch house!” and I would watch, like a spectator, as my hand went to the card my hand, not my brain, wanted. And down in the data book it would be marked that I had not yet mastered the concept of tree.

Imagine going through that for 40 hours a week. According to Deci and Ryan, feeling competent is a psychological need. With that in mind, there can be no question that ABA is psychologically abusive to those with motor difficulties.

Consider any time you decided to learn something just for fun and you’re seeing competence as intrinsic motivation. Playing an instrument is a good example. Not everyone who learns an instrument is doing so to make money. It’s nice to have mastered something and then perform as a display of that mastery. I myself experienced a competence boost when my recent article was noticed and well-received by quite a few people that I admire.

A photo of a chess board with a person's hand holding the white
Photo by JESHOOTS.com on Pexels.com

Relatedness

Sometimes called “social relatedness,” relatedness refers to the ability to experience connections with other people and to feel a sense of belonging. Relatedness is so important for neurominorities. Our brains are very different from the majority of brains, and we are often targeted, bullied, and singled out for being “weird.”

One of the biggest myths about autistics is that we lack empathy. I mentioned the etymology of “autistic” earlier. Unfortunately, this idea is the real reason that “auto” is part of “autism.”

We were interpreted as being off in our own worlds, not interested in other human beings, and unable to understand them. Nothing could be further from the truth. While not all of us are social butterflies, many of us love being with other people… we’re just picky about who those people are.

ABA notably ignores the psychological need of social relatedness, though proponents might not think it does. After all, behavioural therapy often focuses on teaching skills that are meant to help the child integrate into society more easily.

The problem is that the social skills autistic children are taught don’t contribute to their sense of belonging (and ABA time often replaces time that should be spent learning with peers). Instead, the skills they are taught serve to highlight their differences and imply that they need to change to fit in. That’s the opposite of relatedness.

A solution for achieving social relatedness through education might be to teach autistic children how and why neurotypical children act the way they do… and then teach neurotypical children how and why autistic people act the way we do. There must be effort on both sides. Learning neurotypical communication is a worthy goal for autistics, but children need to be taught in a way that doesn’t diminish their own way of communicatin– not by replacing their behaviours with different, more “acceptable” ones.

The vast majority of my long-time friends are neurodivergent themselves. Noting and acknowledging that fact was quite validating for me when I was still pursuing a diagnosis. It seemed so obvious. We recognize each other, and we might not quite understand why, but there is an innate sense of acceptance there.

In James Cameron’s “Avatar,” the Na’vi people greet each other by saying, “I see you.” It’s not a physical seeing, but more of a spiritual understanding and acceptance. This is the essence of relatedness: feeling understood, feeling important, feeling loved.

A screenshot of Neytiri, a Na'vi character from the 2009 film
“I see you.” © James Cameron’s “Avatar“

In conclusion…

Thank you for reading my self-determination theory infodump article. Our (all humans’) psychological needs are just as important as our physical needs! If you’re feeling mentally unwell, think about how these three needs might play into your state of mind. A small tweak to something to allow for more autonomy, competence, or relatedness might just make a huge difference.

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.

Poetry: Unmasking as Autistic Pride

This article was originally published at The Aspergian.

in the world we live in,
we are told the following things
over
and over
and over
again:

“get up.”

“try harder.”

“use your words.”

“speak louder.”

“stop whining.”

“you’re fine!”

“just ignore it.”

“stay seated.”

“don’t talk.”

“stop moving.”

“be quiet.”

“life’s

      not

              fair.”

“get used to it.”

and in that world,
i now have to learn
how to recognize the following thoughts
(because i was taught
that i was wrong about them):

“i am uncomfortable.”

“i don’t understand this.”

“this is too loud.”

“i am too cold.”

“i am too hot.”

“i am too tired.”

“i can’t ignore this.”

“i can’t do this.”

“i need to leave.”

“i need to stay home.”

“i don’t have to do this.”

“i don’t owe the world.”

and that means
that you might see
me do the following:

cover my ears when it’s too loud
cover my eyes when it’s too bright
hold my nose when something smells bad
use blankets and extra clothes when I’m cold
take clothes off when I’m hot

sleep when i’m expected to be awake
sit when i’m expected to stand
stay silent when i’m expected to talk (or laugh)
talk (or laugh) when i’m expected to stay silent
furrow my brows when i’m expected to smile

take a long time to answer
take a long time to get to the point
hide when i don’t want to talk
stay at home if i need to
leave when i’m uncomfortable

look away when i’m expected to look at you
get loud when i’m expected to be quiet

make sounds you don’t understand
use language you don’t understand
use my body in ways you don’t understand
react to things in ways you don’t understand

I will do things differently.

I won’t be stopped
by arbitrary rules of what is normal
if my normal
doesn’t hurt anyone
and your normal
hurts me.

So you get used to it.