#apraxia awareness

[stuffandthings]

Happy apraxia awareness month

[petty-lemon]

💙

[my-autism-adhd-blog]

Dyspraxia and Autism/ADHD

Neurodiversity Manitoba

[ieatratsforbreakfast]

Because is AAC awareness month, and most conversations center autistic AAC user, want to say happy AAC awareness month to:

people who use because of severe fatigue

people who use because of TBI/brain damage

people who use because they are recovering from stroke

people who use because they just not like talking

people who use because of throat pain/pain in vocal cords

people who use because of other neurodivergence than autism

people who use because of apraxia

people who use because of I/DD

people who use because like it better than verbal communication

AAC awareness month celebrates everyone who use AAC, for any reason.

[birdofmay]

What's the difference between nonverbal and nonspeaking?

I have posts about nonverbal autism, but none about the single topic "What's the difference between nonverbal and nonspeaking?" So this will be a handy linked blog entry for my pinned post.

All summed up: There is no real difference, it's a matter of preference. Please ask us what term we prefer and respect that choice. It's a sensitive topic because there has been a lot of discourse around it ☝🏼

Alright. First things first: Nonverbal is a medical term not exclusively for autism. In the medical field, "nonverbal" simply means that your speech is extremely impaired or fully absent. Yes, there are many meanings of "nonverbal", but this is what doctors mean. Did you know that there's nonverbal cerebral palsy too? (External link)

But let's focus on autism. Autistics who can't speak are said to have "nonverbal autism".

Discourse #1 - the mind is intact

There are many reasons why some autistics never learn to speak. One reason can be non-acquired apraxia (i.e. not due to a stroke, TBI, Alzheimer's, etc.), which leads to limited motor control. If it affects the mouth and throat only, individuals "know what they want to say", but their mouth doesn't cooperate. They either struggle to get words out clearly/don't get anything out at all, or their mouth seems to have "a mind of its own" - they say things they didn't want to say. If apraxia affects the whole body, this goes for actions too. Either they can't make their body do what they want to do (e.g. they want to point at a ball but their arm won't move) or their body does things they didn't want to do (e.g. they want to point at the ball but instead their finger points at the floor).

As you can imagine, this situation is really unfortunate when a therapist wants to test your intelligence. You can't get words out, so they ask you to show them what a triangle is. You know what a triangle is, but your body does its own thing. You point at the circle instead of the triangle, and your therapist concludes that you don't understand simple instructions. They assume intellectual disability. You're misunderstood all your life and everyone thinks that you can't learn to communicate, that you don't understand language. You're frustrated.

Luckily, at some point some people realised that these autistics CAN learn to communicate and in fact are very capable and understand language just fine. That was when apraxic autistics talked about this misunderstanding online. They talked about how they were mistreated and underestimated, that people should always "presume competence". They coined a new term for themselves: "Nonspeaking". In their opinion, "nonverbal" doesn't describe their experience and makes it sound like they can't learn to read or write. "My mind is intact, I can make intelligent choices about my life!" (External link)

Sounds good? Well, it may be surprising to know that most of us on Tumblr who can't speak either don't mind being called "nonverbal" or actively prefer nonverbal over nonspeaking. How can that be?

Discourse #2 - the mind isn't always intact

There are other reasons why some autistics never learn how to speak. Most of the time, in contrast to "nonspeaking self-advocates", we do struggle to understand language and our mind is not "intact". We have language disorders, brain damage, slow processing speed, often ID. The latter is why most of us aren't on any social media. My ability to communicate isn't average for us, it's an exception!

When the "say nonspeaking" wave reached Tumblr, I think at first most of us who are on social media liked that idea. We spread awareness about how terminology is a preference thing, that "nonspeaking" is about overcoming years of mistreatment and about empowerment. That some of us think that "nonverbal" sounds like we can't communicate and can't understand language, when that's not true. But, as I said, most autistics who never learned how to speak aren't online and therefore can't participate in this discourse. "Nonspeaking self-advocates", on the other hand, are on social media and love to participate. But they are a minority among those who can't speak.

The result? At some point it got a little ableist. The mindset "We are intelligent and understand language" turned into "You guys with ID and language disorders make us look bad" and THAT turned into speaking over and ignoring us. Or harassing even. "You have to call yourself nonspeaking, otherwise you're a bad person!" and so on. We responded "No, you say you're intelligent and your mind is intact. Good for you, but ours isn't. You erase our existence and we don't relate to your experience. We don't identify with your word." It was worse on other platforms, at some point the term "nonspeaking supremacist" was coined similar to "aspie supremacist".

Discourse #3 - free interpretation of a term that's NOT loosely defined??!

And last year, a really strange thing happened: Speaking autistics somehow mixed up the "To me personally, nonverbal sounds like I can't learn to communicate and don't understand language at all" and incorrectly informed others "So there's a difference between nonverbal and nonspeaking. Nonspeaking means that you can't speak and nonverbal means that you also can't communicate in other ways".

They took it as a fact and informed us that we "by definition" actually are nonspeaking because we can communicate via text. 🤦🏻‍♀️

I repeat: Most of us who can't speak aren't on social media. So this misinformation again spread everywhere because we weren't enough, we weren't loud enough. We can't ever be loud enough because, exactly: Most of us aren't on social media.

Now we weren't harassed by fellow nonverbal/nonspeaking autistics, nope, NOW suddenly speaking autistics from ALL over the world tried to inform us that we shouldn't call ourselves nonverbal - NOT aware that by now "nonspeaking" got a slightly ableist connotation in the process 😵

Here's an example of how wild things were last year...

And that's not enough: Suddenly everyone assumed that autistics who can't speak due to apraxia MUST call themselves nonspeaking because that's where the movement started. No, even apraxic autistics sometimes prefer "nonverbal", and they have every right to do so!

As things are now...

So, that's why most of us on Tumblr prefer nonverbal. Oh, and by the way:

Whenever someone isn't aware of this and makes a "To me, nonverbal means..." post, all I think is "Oh, not again, please not again", and I see this war flashback meme in my mind's eye 😅

Every "To me, nonverbal means..." post that ends with "And that's why I prefer nonspeaking" has the potential to get loud and start this harassment and misinformation all over.

Every new post that tries to define nonverbal and nonspeaking could start this all over again.

Because nonspeaking supremacists are very very loud. And speaking autistics are usually very very uninformed about us. And most nonverbal/nonspeaking autistics aren't on any social media.

[zebulontheplanet]

Saw a post and it really got me thinking.

The post was talking about why don’t lower support needs, higher masking individuals even believe that higher support needs, low masking, “severely autistic” people, exist. And that got me really thinking. Because, I do think they know we exist. I just don’t think they want too.

I don’t think they want to know we exist. They know we exist, but keep us on the back burner. They live in ignorance bliss of us. I have what some people would think of as severe autism. Im nonverbal (although nonverbal later in life. But outside people don’t care about that. They see nonverbal as nonverbal), I’m intellectually disabled, need help in everyday life, etc. but I’m in the middle. I’m moderate support needs. To me, I’m not severely autistic. But to society, I am considered and seen as severely autistic because society doesn’t have the understanding of moderate autism yet. They don’t understand it. And I’ve seen more times than I can count that severe autism doesn’t exist. Not because they don’t believe in severe autism the label itself because it’s “harmful” but because they don’t believe that it’s just caused by autism. They often believe that’s it’s caused by comorbidities. Like ID, or cerebral palsy, or apraxia/dyspraxia, or mobility issues, or genetic conditions, and so on. Although none of this is bad.

They believe that autism itself can’t create severe autism. Which…isn’t true. Before, it was believed that severe autism was the only type of autism. That it was the only type that existed and if you weren’t severely autistic then you weren’t autistic. Then more research happened, then social media happened, and now..white, lower support needs, high masking, late diagnosed individuals are the majority of what’s being centered. And, that isn’t bad. We need awareness of all autism. But when one type of autism gets centered, it becomes a problem. It becomes the new norm. It becomes what everyone expects out of autism now. Which, isn’t true. Autism all of all types and traits exists. Autism of all support needs exists.

When people say severe autism doesn’t exist, they’re ignoring and saying that a BIG percentage of autistic people don’t exist. They’re saying that we aren’t real. That we aren’t on the internet, or in the communities they live in, or in their schools, or whatever. We’re everywhere. Severe autism is still a thing. It isn’t a misdiagnosis. It isn’t from comorbities, although if someone’s autism is more severe from comorbidities then that isn’t bad.

I think a lot of people need to be more aware of severe autism. And not just severe autism like me or my mutuals, or the people you see here on tumblr. But the ones with even MORE severe autism. The ones who live in group homes, residentials, institutions, and so on. The ones who aren’t on the internet. The ones who aren’t here blogging about their lives. We need to be aware of them too. We need to believe they exist, and believe that their autism is real.

Don’t erase severe or profound autism.

[dao-the-starlight]

Alright, it's time....

Say hello to my main OLNF MC!!!!!

This is my baby Marceline Jeandel!!! σ(≧ε≦σ) ♡

I want to make a much more formal post about them in the future where I go more in depth into who they are but that'll wait until later because I want to talk about Marceline and I want to talk about them NOW!! So this'll just be a quick intro (under the read more)

So! At 10 years old little Marceline Jeandel moved to Golden Grove all the way from their birthplace, France! The move was a pretty daunting event, especially since they were travelling to a completely different continent, to Marceline it was as if they went to a different dimension entirely! But, Marceline had their Maman, their most loved and trusted figure in their life, if she was there then they'd be able to do anything

Marceline (in this step) is a young transgender boy with He/Him pronouns, their journey with their gender is one filled with quite a few twists, turns, and feelings that I won't delve into in full here, all you really need to know now is that they eventually figure out that they are genderqueer and primarily use they/them pronouns!

For the most part, Marceline is nonverbal in step one (in steps two, three, and four they're not necessarily nonverbal but they still talk very rarely). The reason for this is that they have a fairly severe form of Apraxia of Speech, a neurological disorder that essentially makes it extremely difficult if not impossible for the brain to send signals to the parts of the body that control speech, this renders Marceline unable to form coherent sentences and makes it so they can only really make random vocalizations and maaaybe say a word or two on good days. They are in speech therapy for this and are slowly but steadily getting better at forming proper speech but for now, they only really communicate through various vocalizations when it's needed. I will mention here as well that Marceline is also Autistic! I've done extremely thorough research into both of these conditions to make sure I'm representing both in a respectful way, I'm aware of the stereotypes a nonverbal autistic character can easily fall into and whenever I do anything Marceline related I always make sure I'm not running them right into any possible stereotypes

Lastly! Their relationship with the leads!

When it comes to romance, Marceline is paired with the one and only Qiu Lin, it was a crush at first sight for them, Marceline just couldn't resist the typical Qiu charm! For step one Marceline and Qiu are naturally very close but there is just a tad bit of a distance between the two simply due to the fact that because of their crush, Marceline holds Qiu on an extremely high pedestal and greatly admires them which ends up leading to Marceline never acting like they're on the same level as Qiu and letting them guide everything (basically, Marceline is accidentally feeding into Qiu's self-sacrificing behaviour, but don't worry! They grow out of it by step two I promise!!) Nevertheless, while the two go through many hardships they do end up on the other side as forever lovers <3

As for one Tamarack Baumann, she and Marceline are inseparable lemme tell you- From day one those two became the best of best friends and get along with each other better than anyone else. Their playful and carefree personalities and energy melded together perfectly which led to them almost immediately forming an unbreakable bond with one another that lasts all the way into adulthood. Whatever Tamarack needs Marceline will almost always be there, whether she needs a playmate, support, personal cheerleader, partner in crime, and whatever else Marceline will always be there. The only time there's ever any tension between the dynamic duo is if Tamarack's bossiness gets the better of her and annoys Marceline, but the two are always quick to apologize and make amends (and this pretty much stops being a problem entirely by step two as they both for the most part grow out of these habits)

And I believe that's all the main stuff you need to know about Marceline! Now I can actually talk about them more!! Thank you so much for taking a look at my MC and have a wonderful day!

P.S. Dividers by @cafekitsune

[clownrecess]

I want to talk about AAC representation on TV, and why it is so so important.

I am currently only aware of five nonspeaking characters in TV shows and movies, and only two of them are represented in a way that makes me as a nonspeaking person feel actually seen. The majority are disrespectful mockeries of nonspeaking people.

It is so important to be able to see people like you. It is so important. Without representation, it feels like people who look like me and act like me are weird or that we are at least meant to feel that way. It feels like we are not seen, and listened to. If we were, and we were fully accepted as existent humans with complex thoughts and identities, we would be shown on television the same way speaking people are. There would be a main character who has a best friend that is a nonspeaking autistic who works in fashion. There would be a main character with speech apraxia who loves making clay mation and makes a career out of that. There would be a queer nonspeaking person with cerebral palsy who is a video game designer. AND MORE (obviously). We would be shown as people with cool and unique careers, interests, etc. Currently, most of the "representation" is either there to help another character get further development, or the character is litterally just "look!! I am disabled!" and exists purely as a character with absolutely zero personality that only exists to exist as a disabled character.

If I had representation that showed people like me as ACTUAL PEOPLE, my disability would not only be so much less stigmatized, but I would feel less anxious to exist in public.

The frequency of which I am fake claimed would decrease, my confidence would increase, staring would decrease, etc.

As someone who uses an AAC device every day, I want to see more representation and understanding of this technology in the media. Let’s start including all types of communication in our storytelling and break down the stigma surrounding AAC devices.

[nonspeakingkiku]

what kind of AAC do you use, my son is non speaking and is interested in one, but I have no idea where to start

Kiku uses lots of kinds of AAC!

Mostly Kiku's phone and ipad with multiple apps on them (LAMP, Prolquo2go, Proloquo4text, Touchchat, Proloquo, and TD Snap), communication boards with words and symbols on them, communication books, letterboards, picture cards, communication cards, emojis, texting and gestures and noises (think that is everything).

A good place to start is to see if you have or could get a tablet to use for AAC or some other form of robust AAC (robust means the user can say anything they want to with it. Robust AAC has all parts of speech, punctuation, a keyboard, and prestored messages.)

Most robust AAC apps are on apple but there are some on android as well.

PODD books are an example of a robust communication book.

Also keep in mind that many AAC users communicate in many ways (multimodal communication) and whatever you start with likely won't be the only way he communicates. Finding what works for a user takes time.

If your son has any other disabilities those should be taken into consideration (visual impairment, motor skill issues, ect) but also know that kids can often adapt pretty well and things like a smaller grid size or hiding a bunch of buttons should be a last resort if the user shows they need it. (Kiku uses multiple grid sizes).

If there aren't any real concerns about vision or motor skills then it's best to go with the largest grid size the user can see and touch.

AAC apps often go on sale twice a year for AAC awareness month and Autism awareness month).

Some info about some aac apps:

Kiku can only talk about apple based apps because those are what Kiku uses. Some offer trials or another way to access vocabulary to try it.

LAMP Words for life: 1 grid size (84 buttons/ 7 by 12 grid). $300 US Lamp is a heavily motor planning based aac app with a associate based organization method. LAMP was designed with autistic people in mind and can be helpful for those with motor disabilities or motor planning disabilities (apraxia). It has a small amount of high contrast symbols. LAMP is unique because it has only one spot for each word and it alerts you if you accidentally try to add a word again. That is because of the method behind LAMP (language accusition through motor planning). Bilingual options

Proloquo2go: multiple grid sizes, including custom grid sizes. $250 US Proloquo2go is a highly customizable aac app. A highly recommend grid size is 7 by 11. Custom grid sizes have to be organized by the user/person setting up the aac device for the user. Of of the more unique features of Proloquo2go is it has a typing feature. It lets you use the system keyboard to type in a large space. You can have it speak or show it to someone. Bilingual options

Touchchat: multiple grid sizes. $300 for Touchchat with Wordpower, a couple other options available. fairly customizable, multiple premade vocabularies. Options to buy multiple symbol sets. Editing is a bit more involved than with some other apps. Wordpower is the best option if going with Touchchat because they are the most robust vocabulary options. Option of high contrast symbols. Bilingual options.

Proloquo: 1 grid size (roughly 6 by 10). Subscription based, 3 options: $9.99 monthly, $99.99 yearly, or 1 to 5 year licenses. Comes with Proloquo Coach which helps parents learn about aac and how to teach aac. Proloquo has so many words. And a lot of room to add more. Might not be the best option for users with visual or motor impairments, but every user is different. Kiku highly recommends Proloquo because so many preprogramed words, with a good grid size, and access to Proloquo Coach.

TD Snap: multiple grid sizes. Subscription based: $9.99 a month. Multiple premade pagesets of varying sizes. Multiple vocabulary options. (Core first, Motor Plan, Aphasia, PODD ($4.99 a month), and Gateway ($4.99 a month). Large amount of high contrast symbols. TD Snap used to be a $50 one time purchase. But it recently became subscription based.

Proloquo4text: Text based with presaved phrases. Fairly customizable.

Speak for Yourself (S4Y): 1 grid size (120 buttons/8 by 15 grid) $300 US. another heavily motor planning based aac app, this one with no word more than 2 taps away. Words can only be added once, similar to LAMP. Unique features include babble (the ability to toggle between having a certian number of buttons showing or all of them), hold that thought (stores messages so you can say something else and then return to the previous message), and a history feature (shows you things that have been said using the app).

Hope this helps!

[theautisticdoctor]

Entry #011

Stress Signals

How do I know that I am being triggered? Everyone has stress signals, some are rather obvious stress signals, some are more subtle. Again, it's worth to start notice what makes you uncomfortable to start understanding what triggers you. And often your body tells you first. This is especially true for me, because I have a lot of trouble with recognizing emotions due to alexithymia. I think I started to notice my bodily uncomfortabilities first and my emotions second. You can use the information in my previous posts to help you find out what stress signals you have upon being triggered. I'm just going to share a list with behavioural traits and bodily feelings that make me aware of that I'm being triggered. Maybe it’ll help you make your own list of stress signals.

Tremors

Repetitive body movements

Headache

Migraine

Jaw clenching

Nausea

Racing thoughts

Disassociation

Feeling ungrounded / disconnected

Isolation

Selective mutism

Mutism

Stuttering

Aphasia

Apraxia / dyspraxia

Fixation on special interests

Exhaustion

Craving sugar

Hyperventilation

Itchy skin

Feelings of unrest and uneasiness

Fast beating heart

Hibernation

Executive dysfunction (see beneath)

Joint pain

Muscle spasms

Disturbed day-night rhythm

Executive Dysfunction

Problems with planning

Problems with organising

Problems with initiation

Rigid thinking

Problems with time management

Problems with finishing a task

Problems with evaluation

Emotional dysregulation

[alphyser]

Shinsou in my DR 🌘; (This has a few sensitive topics like ASD, that I'm not really knowledgeable about. So if I approach anything in a way that is in any form disrespectful, please correct me, I want to be able to talk about it in a respectful light. These are just the things that I was told by the character himself in my DR.)

He has ASD. It was one of the first things I learned about him. He has high functioning autism, but most people don't know. They look at him only as this quiet guy that seems to be looking down on other people because of how much advantage his quirk gives him. He doesn't try to hide it really, he just doesn't make an active show of telling everyone. Besides, in his perspective, even if he does tell anyone, they all tell him that he definitely doesn't have it like they know better because he doesn't act like what they think people with autism should. (I don't really know much about ASD and am still learning. These are just things that I learned from the people in my DR.)

He was diagnosed for it when he was 4, about the same time when his quirk was supposed to kick in. But he was actually a late bloomer. His quirk manifested when he was 6 years old. He used to have(?) apraxia when he was a kid but he went to speech therapy a lot and now he speaks "normally" (I say in quotation because it's just what people define as normal.)

He's a genius in math and logic puzzles. Everything seems to connect for him and it comes easy. He has this app on his phone called Calcudoku, which is like sudoku but with calculations. I don't really know how to play it but he enjoys it. He also loves playing games like flow.

He loves the stars. He loves tracing the constellations and graphing out the phases of the moon. He has these charts of how the planets move across the sky. And his graphs span across years now. He also knows how to build a telescope and has a few laying around his dorm room. He also has paper mache creations of some planets, diaramas, and this globe that shows star patterns.

His tired appearance and heavy set in eyebags was actually something he was just born with. He sleeps just fine, in fact, he sleeps pretty early and takes care of himself very strictly. Although he is a little dehydrated, leaving him with chapped lips a lot of the time. He actually peels his lips a lot, leaving it with a lot of wounds.

He loves to read. Once he gets started on a book, it's hard to pry him away from it. I was surprised to see that he read absurdist literature, like Camus, but as I got to know him he turned out to be a really philosophical guy. He's very self aware and acknowledges that he's immature but he always strives to be the best version of himself.

He speaks in poetry. Not in like the confusing rhyming way, but more in the metaphorical deep sense. He once described time as a river and how everyone was just a rock. "It just keeps running endlessly and the rocks are all affected in different ways. Some get pushed off the edge, others never move, some change courses half way through. But the river just keeps on going even if all the rocks eroded and gone."

[five-thousand-loaves-of-bread]

from this post of mine receive this comment:

@relativestranger85 Please help. I'm in the UK and have a pseudo none verbal 7 year old and idk what aac is. The only things we've ever been offered is pecs which he absolutely does not like. (If you don't know pecs is pictures on a velcro board)

thank you for trust me with this question! try answer best i can. i know a lot abt AAC and nonverbal now and struggle with speech communication entire life but! not born nonverbal, so please take what i say grain of salt.

(gonna also tag @birdofmay , hope that okay, especially on perspective of nonverbal since birth & didn’t become aware of people & surroundings & communication until later? some nonverbal people very aware of surrounding since young, while others are very opposite. the “not aware” perspective am not good resource since i Don’t Remember.)

also, am in US, so not very familiar with UK laws. you may need to look into it. but even then not familiar with US laws - not lawyer.

AAC:

AAC stands for augmentative and alternative communication. has many forms. low tech AAC is like communication book, picture cards, PECS is a form of low tech AAC (talk more abt later)! high tech AAC is probably what people think of, an iPad or a dedicated communication device that generates voice. with iPad, can download / buy AAC apps on it on your own.

in US, public schools or schools that receive federal funding is i think required to give students who need it an evaluation with speech therapist, which can include AAC evaluation. some schools may not like to do it may not do it on their own because high tech AAC device expensive, but it is your right as parents & your child’s right, should 100% ask and push if school resist. getting AAC device through school is through education perspective—does child need this for education success. if AAC device approved, you may get to keep it (ideal) but also may have to keep in school or give back to school once leave (not ideal). now, don’t know if same in UK.

in US, can also get high tech AAC device covered through insurance. speech therapist do evaluation on what AAC app and device best fit, then submit to insurance. if insurance covers it, it’s yours, get to keep. insurance look through a “medically necessary” perspective. again, don’t know if same in UK with NHS (i think that what it called).

otherwise, can also buy an iPad or android device and download/buy AAC apps on there. many AAC users have made list of good & robust apps recommendation, will link below. however, AAC apps can get expensive, and some most popular apps only support ios/iPad.

either way, really do recommend find speech therapist who specializes in AAC to help, if can afford & have someone near you. it’s possible to do it on own, but can be difficult. but sometimes also bad speech therapists give wrong advice or not up do date info, so either way recommend do own research. can be really really overwhelming, please take one step at a time.

important things to mention is using AAC does not hinder mouth speech development. in some ways it actually helps! doesn’t mean your child will always catch up and become fully verbal when older (happens sometimes, but not often). but really, goal for child is to give them way to communicate. speech is not inherently better form of communication, just more normalized. i know it can be hard to believe, because so many people say other wise, even clinicians! but really. communication is most important. speech just a form of communication.

sometimes nonverbal people struggle with more than just speech. may not speak because of many reasons. may be struggle with communication as a whole, expressive and/or receptive language disorders, maybe motor skills (childhood apraxia of speech), maybe not aware that sounds people make is communication, maybe not aware of people, maybe not aware they can & should communicate, maybe not understand. here is something i wrote about it, it not directed at parents but more so other lower support needs speaking autistics, but think info may be helpful, because know why child nonverbal can help with target intervention.

AAC, especially robust AAC apps, can be extremely overwhelming to even adults. if you as parent overwhelmed by amount of information and amount of buttons, it’s okay, it happens. may feel like running out of time, but time you take to learn to make sure support child in helpful way and time you take to rest is not wasted time.

there is always more to things write here. here is a more comprehensive thing (but of course, still missing things because cannot write everything):

a reddit post i once wrote to parents abt AAC (prefer for people to not dig through this reddit since don’t like use now)

additional:

once wrote a tumblr post with many AAC info and words by AAC user. lots of information so may be overwhelming so specifically highlight these things for you (semi-ranked):

genuinely the best intro to AAC resource out there, if read nothing else please please read all of this: https://www.assistiveware.com/learn-aac

a facebook group ask me, i’m an AAC user! (24 hour rule) - really recommend if want other AAC user perspective, and after 24 hours of a post, may also hear from parents of AAC users, SLPs/speech therapists, etc.

tiktok user AverageMillenial18 - an autistic parent to an nonspeaking autistic AAC user child. talks about own parenting experience, especially a lot of AAC modeling (very important!!!!) and presume competence. genuinely helpful, not just “silly tiktok bad.”

aac apps: a personal opinion review of AAC apps i tried, another thing of mine, not mine but All About AAC: A Guide to Augmentative and Alternative Communication Options!

gave you lots of information already, probably already overwhelmed you. hope didn’t come off too strong. remember it okay to take it slow.

p.s. you mention using PECS (picture exchange communication system). am assuming you talking abt the actual PECS system and not just picture exchange cards. (PECS is a type of picture exchange card with rules and stuff)

not here to say “PECS worst don’t use PECS” because don’t know your situation. think there more nuance than that. but do think you deserve know multiple perspective—the specific PECS system can have issues and problems, a professional explains here better. give you this so you can make informed decision! not here to shame you, many parents not given all information, you clearly care very much and want best for your child, and also - may still see improvements even if harmful elements, because not binary black and white. but considering you say he does not like, maybe sign that PECS not work out great with him.

hope you and your child the best and please, if have any questions feel free ask.

[daisybslt]

Speech & Language Pathology Stroke Terms

Disorganised list of terms used in slt for stroke- for study/quick reference.

AAC- Alternative augmentative communication.

ABI- Acquired brain injury (anytime after birth).

Agnosia- Inability to process sensory information (in Greek gnosis- "not knowing").

Aphasia- Impairment of language, affecting the production or comprehension of speech and the ability to read or write, depending on the affected area of the brain. (Greek a/without + phásis/speech").

Apraxia- Inability to execute purposeful, previously learned motor tasks, despite physical ability and willingness. (Greek a/without + praxis/action).

Aspiration- Food or fluid accidentally enters the lungs through the windpipe, often as a result of dysphagia.

Bilateral- Involving or affecting both sides, usually referencing both sides of the body.

Capacity- Ability to reason, make decisions and consider choices, express views and receive and understand information (AWI= Adult With Incapacity).

Cerebro-Vascular Accident (CVA)- Stroke.

Cognitive function- Anything involving thinking.

Deep Vein Thrombosis (DVT)- Blood clot forms in a deep vein.

Deglutition- The act of swallowing.

Dementia- Decline of function in the brain causes cognitive problems such as difficulty with memory, understanding and mood.

Dysfluency- Any type of speech which is marked with repetitions, prolongations and hesitations; an interruption in the flow of speech sounds. Commonly known as stuttering or stammering.

Dysarthria- Collection of motor speech disorders.

Dysphagia- Swallowing difficulties.

Embolism- Blockage of a blood vessel by a blood clot or piece of fatty material or other debris in the blood stream. An embolism is a type of stroke.

Enteral feeding- Feeding through a tube connected to the person's stomach.

FAST test- 'Facial drooping, Arm weakness, Speech problems, Time to call 999'

Fluency- Smoothness with which sounds, syllables, words and phrases are joined together during oral language.

Hemorrhagic stroke-  Caused when a blood vessel in the brain bleeds into the brain tissues or the space around the brain.

Hemianopia-  Loss of one half of your visual field. 

Hemiparesis- Weakness on one side of the body.

Hemiplegia- Complete paralysis on one side of the body.

Hypotonia- Abnormal decrease of muscle tone.

Ischemic stroke/ Infarct- Damage to the brain caused by lack of blood flow, usually from a clot. An area of tissue that is dead because of a loss of blood supply. This is the most common type of stroke.

Infarction- A sudden loss of a tissue’s blood supply causing the tissue to die.

Ischemia- Blood flow (and thus oxygen) is restricted or reduced in a part of the body. 

Ischemic penumbra- Areas of damaged but still living brain cells arranged in a patchwork pattern around areas of dead brain cells.

Lacunar stroke/infarct- When a small artery deep in the brain becomes blocked, causing a small area of damaged brain tissue.

Left hemisphere- Controls speech, comprehension, arithmetic, and writing.

Muscle tone- The degree of natural tension in a person's muscles. Abnormally high muscle tone can lead to muscle tightness and stiffness (spasticity). Very low muscle tone can cause floppiness (hypotonia).

Muscle tension- When muscles of the body remain semi-contracted for a period of time in the resting state.

Naso-gastric (NG) tube-  Medical catheter that's inserted through your nose into your stomach.  Used both to deliver substances to your stomach and to draw substances out.

Neglect- Not being aware of one side of the body and/or environment.

Neuron- Nerve cell.

Neuroplasticity- The ability of undamaged parts of the brain to take over the jobs of damaged areas.

Nystagmus- Continuous uncontrolled movement of the eyes.

Paralysis- Partly or entirely unable to move the affected parts of the body.

Percutaneous endoscopic gastrostomy (PEG)- Feeding tube placed through the abdominal wall and into the stomach.

Right hemisphere- Controls creativity, spatial ability, artistic, and musical skills

Stroke- Occurs when something blocks blood supply to part of the brain or when a blood vessel in the brain bursts.

Spasticity- Abnormal increase in muscle tone or stiffness of muscle

Thrombolysis- An early treatment for some types of strokes caused by a blood clot.

Thrombosis- A blood clot that forms in an artery.

Transient Ischaemic Attack (TIA)-  sometimes called a “mini-stroke”. Blood flow to the brain is blocked for a short time, usually no more than 5 minutes.

Vertebral artery dissection (VAD)- A tear in the walls of an artery at the back of the neck, blood can then get between the layers of artery walls and can lead to a clot forming, causing a blockage (a stroke).

Visual field loss- The loss of sight in a particular area of visual field.

[safety-pin-punk]

hi i just want to say thank you for your punk 101 shit and also sick punk because as someone who radicalized after becoming disabled it's so difficult to find resources about being punk from a chronically ill perspective (if you have any advice about praxis and involvement in the punk community when you're heavily disabled i will gladly take it)

Hi!!! Thank you, it means a lot that someone cares about it

It certainly is rough to find anything (including non punk stuff) from a chronically ill perspective

As far as advice goes, when you say praxis, I’m not entirely sure what you’re referring to. I know medically praxis refers to a person’s ability to plan motor skills, and dyspraxia/apraxia is the inability to do so. Is that what you are talking about?

If so, actually, YES! (And if not feel free to tell me and I’ll see if I can scrounge something up)

Ways to be involved in the punk community while disabled:

Be an advocate for something. If there is a cause thats close to your heart, learn about it and spread awareness. Educate others. Something as simple as starting a blog (or uhg a twitter) dedicated to it helps to spread awareness of it

If you are artistic (or not and just want to have fun anyway) you can make a zine!

Write to your representatives, call them, tell them what they are doing wrong

If you are able, you can go to smaller gigs (or even bigger ones that have handicapped sections if you need). When I go to concerts with one of my friends who has a few disabilities, we stay up in the seats away from people.

As always, people are free to add things in the notes!!!

[echofromtheabyss]

Something really frustrating in ND discourse is that as we shifted from the LD model to what became the ND model, focus shifted away from things that actually cause functional problems (such as dyslexia, apraxia/dyspraxia, processing, etc) to social and mood optics, it's like other aspects of ND experience became totally invisible. This is where a lot of "it's not a disability" people may be coming from; sure, if your main issues are social, and or lack of tolerance from other people, the solution is social. But plenty of problems aren't social and I am very, very self aware about many of my social issues actually being downstream of other aspects of my ND experience, and many of my social experiences aren't even the root problem. In particular - the focus shifted from how well students were doing and or adjusting, to optics of obedience (ADHD) and conformity (more contemporary approaches to autism which heavily focus on social optics as the primary disability of autism).

Guess what? There are parts of my ND stuff that I VERY much experience as disabling. It's disabling that my cognitive bandwidth is basically a monodirectional, monotropic pipeline about the figurative width of a straw. It's disabling that I can sit in one place all day and not move even if I have to pee and I'm hungry and getting weaker and weaker. It's disabling that I even lose control, sometimes, over some things about my body when that pipeline is jammed - an example of something I used to experience was going physically limp when I laughed or cried, and also, laughing spells that would go on for several minutes once they started. My losing speech is actually connected to this same mechanism. A vast chunk of things I experience, in fact, that I find to be functional limitations, are connected to this same mechanism.

It's actually a problem that sometimes I can't drive safely while engrossed in a conversation. It's actually a problem that I can't process stuff while sitting in a group of people. I have a very limited amount of time before the dissociation in begins. I'm not able to mirror other people's movements easily which actually becomes a functional learning limitation in some settings, and much social impairment I've experienced is actually downstream of this, because of being unable to mirror other people's expressions and gestures. I got my left and right mixed up for a very long time. I know that some ND people pick up sign languages but I suspect I'd be one of those that finds it difficult. This is not a case of "the world not being made for me." These are functional limitations that I have to have workarounds for. I manage better as an adult than I did as a child largely because I'm able to choose my environments more, but I'm lucky enough to not have to work where this would be a problem, and these same learning issues actually have caused me significant adaptational problems at work - I basically hit a brick wall trying to work in health because I couldn't pass practical exams, and ended up stuck doing home care. The big career problem I have is how many jobs have been lost to technological obsolescence that were formerly available to a broader socioeconomic strata of NDs - the majority of them.

None of this stuff relates to how other people treat me as an ND person; the things that got me recognized as ND fairly early (though we weren't using the term "ND" at the time; there are various reasons for this) are things I experience as functional limitations.

None of this stuff is really talked about in ND discourse anymore despite all of these things being fairly common comorbids with autism spectrum stuff. It is literally only some older autism communities that still talk about functional autism comorbids or learning disabilities.

[speechandotplano]

Signs and Treatment of Apraxia in Children

Apraxia is a speech disorder that can affect children, making it difficult for them to form and pronounce words correctly. Recognizing the signs of apraxia is crucial for early intervention and effective treatment. In this article, we will outline the common signs of apraxia in children and discuss the treatment options available to help them improve their speech.

Signs of Apraxia:Limited Consonant Repertoire: Children with apraxia may struggle with a limited range of consonant sounds, making it challenging for them to articulate words correctly.

Vowel Errors or Substitutions: Vowel sounds may be pronounced incorrectly or substituted with other sounds.

Voicing Errors: In some cases, children with apraxia may have difficulty controlling their vocal cords, resulting in voicing errors.

Articulation Errors: This category includes initial and final consonant deletion, cluster reduction, syllable omissions, substitutions, and distortions, all of which can affect the clarity of speech.

Substitutions More Frequent: Substitution errors are often more noticeable than other error types.

Errors with Infrequently Occurring Words: Apraxic children may make more errors when attempting to say less common or complex words.

Errors in Imitative and Spontaneous Speech: Both imitated and spontaneous speech can be affected by apraxia.

Inconsistent Errors: The same sounds are not consistently in error, making speech patterns unpredictable.

Increased Errors with Longer Words: As the length of words and sentences increases, the number of errors may also rise.

Unintelligible Connected Speech: Apraxic children often have difficulty forming coherent sentences, resulting in speech that is challenging to understand.

Errors Vary with Articulatory Complexity: The complexity of articulatory adjustments required for different sounds may affect the number and type of errors.

Groping or Struggling to Speak: Children with apraxia may appear to struggle or “grope” for the correct words.

Slow Rate and Prosodic Disturbances: Apraxic speech is often slower, with disruptions in prosody, which is the rhythm and melody of speech.

“Soft” Neurological Signs: Some apraxic children may exhibit other neurological signs, such as clumsiness, poor coordination, or a lack of body awareness.

Limited Vocalizations in Infancy: Parents may notice that their child had limited vocalizations or sound play in infancy.

Feeding Difficulties in Infancy: Children with apraxia may also have experienced feeding difficulties during infancy.

Treatment of Apraxia:Children with apraxia can make significant progress with the right intervention. Here’s an overview of the treatment approach:

Speech-Language Pathologist (SLP): A trained SLP will work with the child in a hierarchical approach, starting with isolated sounds and progressing to syllables and words.

Visual and Hand Cues: SLPs may use visual or hand cues to help children understand how sounds are produced.

Identifying the signs of apraxia in children is essential for timely intervention. With the guidance of a skilled speech-language pathologist and a structured treatment plan, children with apraxia can significantly improve their speech and communication skills, leading to better overall development. If you suspect your child may have apraxia, seek professional evaluation and support.