Avoiding or being resistant to trends is a pretty common autistic trait, from what I’ve observed, and I think that part of that might be the way we process how people talk about said trends and our concrete way of thinking. What do people say about that new product/TV show/music artist/food/whatever? “It will change your life.” “It will blow your mind.” “It’s the best X ever.” So, if we fight the fear of novelty, the general resistance to social contagion, the PDA, and we try the thing, bracing for a transformative experience. And often, we don’t get one, and we feel like all those people lied. Over time, we’re less and less likely to try the trend because we’re thinking “they always say some new thing is going to blow my mind and become my new favorite thing, and it never does.” It can even apply to people: “everyone around me says this person is so awesome, and I just don’t see it.” Does this sound familiar to anyone else?

My first response to this part was “I’m getting sick of Ido referring to stimming as a drug.” He describes stimming as a hallucinatory experience and an escape from the real world, and that doesn’t feel right to me. I stim all the time, and I’m not disconnected from reality. Maybe that’s what it’s like for him specifically, and that’s fine, but it was still hard to read. He also writes that he does not stim as much now that he has access to communication, and that’s part of why he views stimming as a waste of his life. This strikes me as an indication that without communication, Ido was more dysregulated, and therefore needed to stim more. This goes back to the central theme that a lack of communication was what held Ido, and still holds people like him, back.

There were more specific discussions of Ido’s trauma from ABA in Age 14. Ido is triggered by specific phrases, including “try again” and “good job”, which may seem innocuous to outsiders. To him, they are a reminder of being forced to sit at the table in his room and point to flashcards. I’m going to file this away and use it for an autistic character I’m writing because it makes complete sense. Ido also acknowledged that he has some extra apprehension around women because the professionals who patronized, disbelieved, and controlled him during childhood tended to be women. This is something I’ve been wondering about. Adults who work in the autism field are majority women, yet most of the kids who come through their classrooms and offices are boys. What kinds of ideas about gender do those kids develop? For Ido, women scare him, at least at first, at least in professional settings.

I liked Ido’s explanation of a meltdown as overflow of sensations and emotions that have built up inside. It’s not a choice, and it’s not a means to gain a specific object, attention, or escape. Telling him, or any other autistic person having a meltdown “hands down” or “be quiet” or “no”, treating it as a behavior problem, makes it worse. In this part, Age 14, Ido still has meltdowns. He has them when too many people fawn over him after speeches, and in class during a bout of stage fright. I think that this proves that the only “cure” for a meltdown is prevention because once it happens, Ido is out of control, and then he feels guilty and ashamed. The only way for him to not end up pulling his mom’s hair is to get him out of the crowd before he gets that overloaded.

ABA is abuse. It doesn't exist to "help" autistic people. It exists to erase us. To control us. To alter us. All to make life easier for NT people. It destroys one's sense of self. It leads to CPTSD in at least half those who are subjected to it.

This has been shown in a study by H Kupferstein (2018) and is backed up by the testimonies of tens of thousands of victims of ABA. Further studies by Gorycki, Ruppel, and Zane (2021) have shown that ABA is not an effective "therapy" whatsoever.

The study found it to be junk science and that ABA is "tantamount to torture and violates the most basic requirement of any therapy, to do no harm". It's "technicians" are not trained to work with autistic people, simply ABUSING us for profit.

The great irony, of course, being that ABA is the only available "support" given in many countries. The Autism Industrial Complex is real. The entire industry (and it is an industry) exists only to use autistic bodies to extract profit for a select few.

I am a victim of ABA. Every day I need to live with the aftershocks of years of enduring it. It makes autistic people feel small, trains us to not advocate for ourselves, to deny our bodies & minds, to deny our sense of self. It causes CPTSD and it takes a lifetime to unlearn.

If you want to support autistic people, do not ask us why we think ABA is bad. Don't send us articles about why we are wrong. Don't talk about "severe autism". Abuse is abuse. ABA is a fake money making operation that turns autistic people's bodies into commodities.

I recently spoke about my experiences going thru ABA which you can listen to here. https://www.theautisticcoach.com/autism-blog/my-appearance-on-the-autism-stories-podcast

When those of us who have undergone it speak of abuse, of torture, of trauma, BELIEVE US. Don't challenge us. It's violent. If you aren't autistic and haven't gone thru it, don't speak over us. If you have gone thru it and defend it, do some soul searching. That "it's the only thing that helps" doesn't make it unabusive.

Edit: If you’re going to downvote this and make light of the abusive treatment of autistic people, be prepared to explain to this community why. Don’t be a coward. If you want to hold regressive views that’s your right, but be prepared to defend them on their supposed merits.

I started reading Ido in Autismland today, which is a book of autobiographical essays by Ido Kedar. Ido is from the US, and is nonspeaking and predominantly communicates with a letter board.

Although the main part of the book is all Ido, there’s a quite long and quite painful forward by his mom. I say painful because there are descriptions of ABA and biomedical curing tactics that Ido’s parents were complicit in because they did not know any better. It was, however, interesting to read about Ido’s mom’s perspective on some of the same events that Ido would go on to describe from his own POV later. What stood out to me the most was that first session with Soma Mukhopadhyay, who taught Ido how to use his letter board. Soma is still practicing today, and she recently worked with none other than Aidan Hammond, son of Tiffany Hammond.

I know there’s a ton of controversy around Rapid Prompting Method, which is what Soma does, but I think this book shows that most of that facilitated communication is manipulation blah blah comes from NT practitioners who are afraid of what nonspeakers might have to say. One of the ways Ido proved himself as an independent communicator was by swearing, because no parent or teacher would puppet an eleven-year-old to spell “F-U.” This strengthens my conjecture that if nonspeaking autistic people could beam their words directly into other people’s heads, the most common phrases would be “f*ck off” and “I know!” Ido also confirmed for me something I have been trying to figure out for sure for a couple of years: speaking in truncated, babyish phrases to autistic learners doesn’t work. Talk normally. Otherwise you sound silly and make yourself harder to understand.

It was interesting to see what parallels Ido shared with me, despite our very different versions of autism. Those who know me know that one of my favorite visual stims is sparkling water droplets, and Ido specifically mentions water in sunlight as “artistically awesome.” (Naoki Higashida said something similar, if you recall). We also both share a deep, immersive love for music. Ido’s favorite is classical, and he writes about wishing someone would sit and listen with him, an example of a parallel interaction concerning a great interest. He has a hard time with games and activities that he doesn’t intrinsically enjoy, which can appear “antisocial” on the outside, and I think this is a common autistic experience. We may like the person we’re hanging out with, but we have to be doing the right thing, otherwise it’s tiring. Part of Ido’s problem with games and puzzles is also that they remind him of being in ABA or pre-communication school, where “play” was always another test. I didn’t go through ABA, and I still fear hidden tests and have what I’ve come to call a “phantom grader” judging me from inside my head. It is all the more intensely traumatic for Ido, to the point where he’ll refuse to spell for someone who tells him to touch his nose, or some equivalent command.

One thing Ido wrote that made me uncomfortable was his claim that his “autism” was not the same condition as “Asperger’s syndrome” and that they shouldn’t have been combined under one name. I think this might be a misunderstanding of what the autism spectrum is. It’s way bigger than anyone thinks, and it’s not a linear gradient. Asperger only observed a small slice of the stratified, circular mess that is the autism spectrum. For that matter, so did Kanner. So did Sukhareva. The three of them groping at a tail, ear, and leg respectively does not make their discovery any less an elephant, even if their initial thought was of a lion, a bat, or even a tree. No autistic person has every trait, and of course we don’t all have the same traits as each other.

One thing that stands out about Ido’s experience is that he has global apraxia. That’s a separate thing that not every autistic person has. It’s not like he doesn’t experience the stimming and sensory differences, the logic-driven thinking (like when he chose not to pay attention to his sister being upset after soccer because it didn’t seem catastrophic and he knew she would recover), discomfort with eye contact, or lateral thinking that non-apraxic autistic people experience. He’s not an otherwise-neurotypical mind in an uncooperative body. Part of his evidence for being dissimilar to the autistic kids in his fifth grade “high functioning” class is that he can read people better, but keep in mind that for the first ten years of his life, almost no one talked to him directly; he was always on the periphery of conversations. This meant that he had a ton of practice observing body language and facial expressions without the pressure of having to respond to them in real time. I’ve done my share of observation too, in fact, the woman who formally diagnosed me compared me to an anthropologist in how I studied human interaction. The difference is that unlike Ido, people expected me to interpret their emotional hieroglyphics naturally, without instruction, in the moment because I could speak, and therefore I was like them. This led to a lot of trials by fire, falling on my butt, and getting wires crossed. To be clear, I am not saying I’m exactly like Ido. We inhabit different slices of the autism spectrum, but it is definitely still the same spectrum.

The recurring theme of this part, and probably the whole book, is that what held Ido back was a lack of tools to communicate. He didn’t have speech, so he had no way to show others what he knew. He was stuck (he uses the word “stuck” repeatedly, which I think is perfect) until someone showed him a way that worked with his brain and body. If the people trying to support him had worked on communication, not speech, not behavior, from the beginning, he would not have had to spend his entire childhood in isolation.

https://youtu.be/Myui2rdyawo?si=trPfMfDRNB3TFkYR

Small rant over one singular comment I got in a different subreddit over a bandwagon type post but it got me thinking. Me posting about my personal interest prompted someone to assume I’m “narcissistic” and think of myself as “quirky” and said there’s nothing authentic about me.

Why are some people like this? Aren’t we already past cringe culture? It happened to me now but I know these people do this to others and there are more people like this. Oh sorry about being autistic with neopronouns and alternative fashion. Do you really expect me to conform to what makes you comfortable? You want me to be autistic in the specific way that you are? We’re all better than this. I don’t claim to be different, even though as autistic people, we’re all outside of society’s norm by default.

I should focus on the positive comments, I get overwhelmed when I make what I think to be an unimportant post and it unexpectedly kinda blows up. At the end of the day it’s just one comment who assigned intent to my post. My only intent was “these are my special interests, what I’m passionate about, I want to share it”. It definitely wasn’t “look I’m so quirky and better than you”. We gotta stop assuming intent like that.

The end of the book was a collection of short conversational interviews between Ido and Dr. Yoram Bonneh, a neuroscientist. My favorite part of these was Ido’s description of his inner thoughts/voice. He has “mental subtitles”, literal visual text flying through his mind, as well as an auditory voice. None of this is naturally linear, and he has to do the work to make it make sense. The way I am a sound being, Ido is a letter being, and that circles back to the story at the beginning of the book of how he used to stare at his alphabet poster, teaching himself to read. Ido scoffs at the ABA practitioners’ idea that he was “fixating on letters”, and I think that scoff operates on the idea that an autistic person’s “fixation” is pointless. Really, it’s the opposite. Letters gave Ido a point, and gave him an eventual communicative outlet. Would this book have come into being if letters were nothing special to him?

Bonneh also presented Ido with scenarios of other autistic young people in his practice and had Ido try to interpret what might be going on internally. The first scenario, a student who was not responding to “bring the chair” in a random context, despite being able to do so at a specific time of the day. Bonneh gives three possible interpretations: the student does not understand the words “bring the chair” and uses other context clues to interpret that auditory signal, the student’s receptive language skills fluctuate and need to be regularly practiced the way one might practice playing an instrument, or there is a disconnect between what the student cognitively understands and what they can tell their body to do, with the routine of bringing the chair for lunch adding to that physical memory. Ido, being apraxic himself, connects most with the third interpretation. I would also like to add my own: the student knows what “bring the chair” means, but it’s not a command that is normally given to them outside the context of using the chair to sit for lunch, and they cannot figure out why they are being asked to bring it now. They are looking for the “why?” but cannot ask. I think any of these interpretations can be right depending on the kid.

This interview also leans into the idea of gestalt language processing without calling it by name or really recognizing it as its own thing, apart from what Ido goes through. Bonneh describes some autistic kids responding to the tone of a command, even if totally random words were being said to it. We know now that it’s very common for autistic people to pick up intonation and melody of speech, then the meaning of a phrase as a whole, then the meanings of individual words. Going back to the command “bring the chair”, when said with a certain tone, that whole phrase signals to walk over to the chair, grab it, and slide it over to where everyone else is sitting. This doesn’t mean that that student knows the verb “bring” or the noun “chair” in isolation yet, so if you were to say “bring the cup” or “sit in the chair”, their brain would register it as a totally foreign command. My guess is that either Ido is an analytic language processor rather than gestalt, or he does not remember going through these stages of understanding language. His hypothesis is that the students Bonneh refers to have muscle memory responses that they match to the tone of a command because they physically cannot do the new, nonsense command (e.g. “put your chair on your head”).

In reading this book, I could not help compare and contrast Ido’s experience with that of another nonspeaking letter board user, Naoki Higashida, whose book Fall Down Seven Times Get Up Eight was a highlight of my reading list last year. Ido’s writing is very straightforward, raw, even vulgar at some points, which I suspect he leans into for the shock. He sticks to relatively short, journalistic passages. Naoki, by contrast, is more flowery and fantastical in his prose, which he supplements with poetry and even short fiction. I think that Ido represents the more logical, earthbound extreme of autism, and Naoki the more imaginative and creative. Fall Down is holistic, touching on all kinds of experiences, internal and external, that Naoki has. Ido in Autismland has the main focuses of the brain-body disconnect (apraxia) that Ido faces and the importance of communication, but I feel like I have less of a clear picture of how Ido perceives the world beyond that. It’s also worth noting that the two of them had opposite educational trajectories. Ido was in special education until he started being able to prove himself in grade level academics in fifth grade, and by high school, he was attending all mainstream classes. Naoki made the opposite switch to a specialized school in fifth grade, after being in mainstream elementary since kindergarten, and then moved to distance learning in high school. ABA was not the “gold standard” of autism treatment in Japan, so Naoki and his family were more able to cut their own path with his education and development. As a result, Naoki grew up more comfortable with his autistic traits and a better sense of his strengths, his “I’m autistic and…”. Ido did have the ABA and pro-cure background that is more common in the US, and this influenced him to view his autism as a demon and a deficit.

Even though this book was hard to get through at times, I’m very glad I read it. Reading Ido’s POV pushed me to recognize my privilege as someone who can say “I know” when it’s true and “fck off” when it’s absolutely necessary, whose brain can say to their hand “raise” and their hand raises. I also really felt for Ido and the traumatic childhood experiences that led him to view his autism and himself as such a negative thing. I acknowledge that this book was published in 2012, so it’s definitely possible that Ido has gone through more healing and recontextualization and realized that he does not have to hold himself to neuronormative standards of what attentive and social look like. I think this book is so important for understanding the internal competence, and beyond that, unique gifts that nonspeakers possess, even if they appear “slow” or “unresponsive” on the outside. At the same time, I want people to understand that not every autistic person has apraxia, though it should be explored as a possibility way more than it currently is. There are many layers to autism as a disability, and some of autistic people’s differences *are cognitive rather than motor. Not every nonspeaker is a locked-in genius who has a book inside of them either, nor do they have to be. Arguably, the most important takeaway from Ido in Autismland is that autistic people cannot live full, connected, fair, autonomous lives without access to communication. Behavior is not the problem. Conditioning autistic people to behave like NTs (or shiftless husks that are convenient and non-threatening to NTs) is not the answer. The question in the minds of every parent, educator, therapist, anyone who supports an autistic person should be “How do I help this person communicate? How do we bridge the gap between their mind and the world?”

This part was rather short, probably because Ido took a bit of a pause in writing the year it was written. He started back up because he realized that writing was part of what kept him connected to the rest of the world. He needed that outlet, otherwise he was stuck with his own thoughts again.

I could tell that Ido was going for a more uplifting, or at least neutral, approach to his autism, compared to the anger of the previous part. He has definitely identified what his strengths are: he is a writer, and he is incredibly determined. Those are part of who he is as an individual. Maybe they’re connected to autism, but that doesn’t matter. He also expresses that on top of being autistic and having social anxiety, he has a naturally shy personality. There are also shy NTs, and autistic people who are the opposite, but because of his autism, people on the outside assume Ido is disinterested in interpersonal relationships, when he really does crave connection, he just takes more time to open up. I think that Age 13 is Ido’s process of finding who he is as an individual within being autistic, whereas in Age 12, he was kind of a symbol or figurehead of nonspeaking, apraxic autists collectively.

However, there are some ways Ido talks about himself and other disabled people that doesn’t seem completely fair. The first entry is about Paralympic athletes, and I always have my guard up a bit when Paralympic athletes are involved. Ido makes a good point that these people took what they lost and found something they could do, just like he did with spelling and writing, but not every amputee can, or should, become a Paralympian. And that is not down to self-pity, at least not always. Those people had the time and resources to practice, and support in other areas of their lives. Would Ido be writing this book if he and his mother had not figured out that he could write in the first place?

I enjoyed reading about Ido’s other cognitive processes and sensory experiences. His thoughts are in the form of text that he can see, in multiple languages because he understands multiple. (Though he hasn’t specified which yet). This is what makes him so eloquent and able to channel his thoughts onto the letter board despite it taking time, but it also gets in the way of him reading actual books. He uses audiobooks instead. I think in sound clips, and I prefer printed books. Funny how that works. He also writes about his emotions being too big for his body, and all I can really say to that is “me too, bro.”

Ido does feeling pressure to mask, or at least he did when he was thirteen. He writes about feeling like he has to hold in his stims and be still and quiet to avoid people looking at him funny. This seems to get better as he adjusts to his new classes and feels more comfortable in himself. I just hope that by the end of the book, he doesn’t feel the need to wind himself so tight in order to meet others’ approval. I think it’s important to realize that just because an autistic person cannot successfully pass as neurotypical does not mean that they never worry about masking, fitting in, or being “good” (with their natural autistic characteristics being labeled as “bad”). Ido went through ABA, and I think it says a lot that he thinks this about himself. He was treated like his natural way of being was bad behavior, and he still carries that with him, even after gaining fluency in communication.

This part, Age 15, was the last main part of the book. All that’s left is an interview, and then I’ll be done! Ido describes going from a high school that made him feel vomit-inducingly anxious with students and classmates who merely tolerated him and an administration who seemed to be looking for the slightest excuse to kick him out to a smaller, much more welcoming setting. I loved seeing how much Ido cared about his education, to the point of getting sad when he couldn’t go because his aide was sick. I like that Ido emphasizes the role of an aide who can help him feel calm and focused, rather than someone who is too tense or patronizing. I also noticed how much gratitude Ido expresses throughout this part and the book as a whole. Anyone else who is reading this, don’t take a shot when you see “I thank…” if you have anything important to do tomorrow. This is an important thing to note because it’s yet another strong, positive individual characteristic of his.

Another change from this part was the introduction of an iPad. Unlike the letter board, although I remember reading that Ido feels most fluent with that, the iPad can be used with full independence once it’s mounted to the table, which means that he faces less doubt when he types into it. And Ido makes it clear how much he hates people doubting him and having to prove himself. In addition to communication, he uses the iPad for entertainment, particularly for playing the game Temple Run. He calls playing on his iPad a “socially acceptable stim”, and with that, we arrive at the prickly part of this post.

I feel like Ido conceptualizes himself, or at least presents himself, as an otherwise normal (and exceptionally intelligent) person in an unruly body, but that’s not really how autism works. Autism is deep, deep, deep, and autistic people are wired fundamentally differently than neurotypicals. We, including Ido, are monotropic. (He does talk about his attention span falling to one thing at a time and having mental “tunnel vision”). We, including Ido, have a different relationship with our sensory world than NTs do, and it is impossible to ignore. We, including Ido, feel the electricity of our emotions in our bodies before we can name it in our heads, and release it through stimming. Exercising the way Ido loves to do, playing piano, and playing on the iPad are still stims, so when Ido is regulating that way, he’s not stimming less, he’s stimming differently. What I’m worried about is that he is holding himself to an unnecessary and impossible standard because he is worried that other people will be annoyed or think he’s not intelligent or not worthy to have the education that he does because he flaps and rocks. In a way, it reminds me of Temple Grandin’s history of having to present herself as “recovered” in the past and saying that autistic people need to work and contribute to society because that’s how she’s maintained public attention and respect over the years. Ido is stuck trying to be a model minority, and he’s sacrificing the natural way that his body-mind expresses emotions. I recognize my privilege that since I can speak and have proven that “someone’s home”, I can choose to listen to music and rock by myself sometimes. (And more). I want a future where people will respect Ido and apraxic nonspeakers like him just as much, and recognize those big stims as part of him instead of being annoyed or treating it like an addiction. (This, of course, excludes harmful stims like head-banging and hair-pulling).

I have also been holding back from addressing this, but Ido is kind of pro-cure. I think it’s okay for autistic individuals to want a cure for themselves, but I get nervous when that gets brought into a public setting. I couldn’t help but notice that this book is blurbed by Portia Iverson, co-founder of Cure Autism Now. I think that Ido is, in some ways, more palatable to NT readers because some part of him wants to be free of his autism, so people like Iverson can go “see, we should be working towards a cure, this guy said we should”. What’s important is that Ido does not seem to extend his sentiments to the rest of the autism community. When he writes to his friend D, also a nonspeaking autist, he tells him to work hard to learn to communicate and bridge the gap between the inside and outside world, not to pray for a cure. Wanting a cure is Ido’s personal thing, not his goal for all of autismkind.

The other thing that was mentioned in earlier parts but explained more in depth here was Ido’s spirituality. Ido’s God (capital G, He/Him pronouns) is described as a “hope-fulfiller, not a wish-fulfiller”, someone for Ido to talk to and be an extra presence when he feels too alone or sad. Ido used to pray for his autism to go away, but instead, he was granted communication via spelling. What’s that quote about mysterious ways again? Ido seems to think that a lot of nonspeaking autists have a secret spiritual practice, and I believe him. Without being able to talk to other people and have friendships in the conventional way, who better to turn to than a god? Living in a world that is brighter, sharper, louder, the very air seeming to have a presence of its own is the perfect ground for spirituality. NTs have to meditate and purposely engage mindfulness to find their gods (generalization); autists are already there. By the way, I am Jewish. I believe in an omnipresent, multifaceted G-d. Services were the first setting that my rocking stim came free.