Hi! I'm Alex. This blog is for me to compile my writings and explanations of my autistic brain. I will mostly be posting original content, but may reblog things that I find accurate to me.
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@this-is-my-autism
Hi! I'm Alex. This blog is for me to compile my writings and explanations of my autistic brain. I will mostly be posting original content, but may reblog things that I find accurate to me.
what 'cyberpunk dystopia already exists for disabled people' looks like for high tech aac users:
(here using 'voice' to mean both an aac program and an aac device.)
Your voice used to be free but now is behind a paywall. Your voice only runs on a subscription payment model and doesn't offer outright purchasing. The cost of outright purchasing your voice is several hundred dollars. Your voice runs ads. Your voice has planned obsolescence. Your voice ran out of funding and is no longer being updated. Your voice is free but requires coding knowledge to create. Your voice can only be used and accessed with a wifi connection. The people most trained to help you with your voice are expensive or unavailable specialists. You require additional aids to use your voice that are difficult to get and/or expensive.
Feel free to add on your own experiences. We listen to and look out for each other.
your voice may omit words about sex, reproduction, drugs, and other "adult" stuff, preventing you from being able to join conversations, express desire, or describe assault
your voice is subject to software maintenance without warning which takes a week to fix
your voice is dependant on how well a large internet server is running (not your own personal wifi, AWS)
your voice is built with materials like cobalt and tungsten , that are mined with unpaid labor and horrific working conditions and is a product of one of the worst humanitarian crises at the moment.
Your voice crashes and freezes, especially when youāre near the end of creating a long sentence, because it canāt handle the overload of stringing together so many words at once.
semi verbal culture is trying to mask in social places . try to prepare mentally to say right words and to preform the act of speak . but by time feel prepared, others tired of waiting and move on .
semi verbal culture also being seen as "good listener" for this and don't mind being seen that
Semiverbal culture
Comprehensive Guide to Verbality Terms and Alternatives
This guide provides an overview of different verbality terms, conditions affecting speech, and alternatives to ableist language. The goal is to foster respect, understanding, and inclusivity for people with varying speech abilities.
SECTION 1: VERBALITY TERMS
1.1 Core Verbality Terms
- Nonverbal ā Unable to speak at all, ever; often relies on AAC (Augmentative and Alternative Communication).
- Minimally Verbal ā Can say only a small number of specific words, typically up to 50 or less.
- Limitedverbal ā Uses spoken language in limited settings and for specific purposes.
- Semiverbal ā Can speak in specific circumstances but demonstrates moderate difficulty speaking most of the time; may use AAC.
- Hemiverbal ā Falls between semiverbal and demiverbal, speaking in some contexts but experiencing occasional or frequent verbal difficulty.
- Demiverbal ā Can reliably speak most of the day, most days of the week, but has mild to moderate difficulty speaking anywhere from slightly to half of the time.
- Majorityverbal ā Close to fully verbal but not quite; may experience brain-mouth disconnects, delayed speech, or articulation difficulties.
- Fullverbal ā Has full ability to speak (except during autistic shutdowns or similar conditions); speaks as much as is comfortable.
- Hyperverbal ā Speaks more frequently than typical verbal individuals, whether by choice or necessity.
1.2 Variable or Context-Dependent Terms
- Verbalflux ā Experiences fluctuations in verbal ability and intensity.
- Choiceverbal ā Chooses not to speak much despite being verbal (e.g., due to discomfort, overwhelm, or difficulty understanding social cues).
- Maskedverbal ā Appears fullverbal by masking or forcing themselves to speak more or less than feels natural.
- Altverbal ā Umbrella term for individuals who are not traditionally fullverbal, including hyperverbal, choiceverbal, semiverbal, nonverbal, etc.
1.3 Mutism & Diagnostic Terms
- Selective/Situational Mutism ā A diagnosable anxiety disorder where a person is unable (not unwilling) to speak in specific social situations due to anxiety or panic.
- Alter-Specific Verbal Terms (for systems with varying alter speech abilities):
- Nonvox ā A headmate who can never speak, regardless of the bodyās verbal abilities.
- Vox ā A headmate who can speak a ānormal amountā regardless of the bodyās verbal state.
SECTION 2: VERBAL SHUTDOWNS & SPEECH LOSS
2.1 What is a Verbal Shutdown?
A verbal shutdown is a temporary period where speaking becomes difficult or impossible. It can be triggered by:
- Negative emotions (anxiety, stress, sensory overload)
- Neurological factors (autistic shutdowns, executive dysfunction)
- Unknown causes
Key Features of Verbal Shutdowns:
- Typically lasts a few hours to a few days.
- Similar to a phone dyingāit may turn on briefly but needs time to ārecharge.ā
- Even if speech occurs momentarily, the individual remains in shutdown.
2.2 Alternatives to the Term āGoing Nonverbalā
To describe speech loss more accurately, consider these alternatives:
- Verbal crash
- Verbal shutdown
- Speech loss episode
- Losing speech
- Contextually verbal
- Speech-variable
- Speech-varied
- Irregularly verbal
- Irregularly speaking
- Speech Block
More
2.3 Expensive Speech
- Definition: Speech that requires significant effort, focus, or energy, often leaving the individual mentally or physically drained.
- Causes: Fatigue, sensory overwhelm, anxiety, executive dysfunction.
- The person may still be technically verbal but struggle with forming or processing words effectively.
SECTION 3: SPECIFIC SPEECH DIFFICULTIES
3.1 Speech Disruptions
- Stuttering / Stammering ā Repeating sounds/words, prolonging sounds, or experiencing āblocksā where no sound comes out.
- Cluttering ā Rapid speech with erratic rhythm, poor grammar/syntax, and difficulty organizing thoughts.
3.2 Pronunciation & Sound Production Issues
- Paraphasia ā Producing extra, unintended syllables/words or substituting incorrect ones.
- Speech Sound Disorder / Phonemic Disorder ā Difficulty pronouncing specific sounds.
- Lisping ā Difficulty with sibilants (āsā sounds).
- Rhotacism ā Difficulty with rhotics (ārā sounds).
3.3 Word Use & Grammar Issues
- Incoherence / Word Salad ā Using confused or disorganized language with seemingly unconnected words and phrases.
- Schizophasia ā Disorganized speech due to schizophrenia.
- Stilted Speech ā Overly formal, flowery, or excessively ādictionary-likeā language.
3.4 Speech Length & Excessive Detail
- Logorrhea ā Excessively rapid and wordy speech.
- Clanging / Association Chaining / Glossomania ā Stringing together words based on sound (rhymes, alliteration) rather than meaning.
- Overinclusion ā Inability to eliminate irrelevant or inappropriate details.
- Circumstantial Speech ā Answering a question with excessive, unnecessary detail before eventually getting to the point.
3.5 Disorganized Thought & Speech Patterns
- Flight of Ideas ā Abruptly jumping between ideas/topics.
- Loose Association / Derailment ā Frequently jumping to unrelated or barely related thoughts.
- Tangential Speech / Tangentiality ā Wandering off-topic and never returning.
- Thought Blocking / Obstructive Thought ā Suddenly losing a train of thought and being unable to restart it.
3.6 Stuck or Repetitive Speech
- Perseveration ā Getting stuck on words, phrases, or ideas and repeating them without being able to shift topics.
- Pressured Speech ā Speaking rapidly with an overwhelming urge to continue talking, making interruptions difficult.
3.7 Limited or Minimal Speech
- Alogia / Laconic Speech ā Speaking very little or providing less detail than expected.
- Distractible Speech ā Losing a train of thought due to external distractions.
Don't believe me that there is an issue with vocabulary?
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Sending love to autistics & others who can't engage in politics
This includes those who:
Are too cognitively disabled to understand politics
Find that politics triggers serious mental health issues that interfere with daily life
Have had their carers/therapists/support workers tell them that politics is bad for them and they need to not read about it
Political participation is hard and not everyone can handle it.
Some people feel guilt or shame about not being able to help more. Cognitive and/or mental health limitations don't make you less of a person. And if you care about helping others, it's okay to find ways to do that that don't cause you great distress.
I have had both a caregiver (my dad) and my therapist strongly advise me not to read about politics because I get way too upset. Listening to their advice is not a sin. I can make a difference in my own way.
Being too disabled to handle politics doesn't make you bad. It's not a privilege. It's okay to focus on things that don't hurt you.
You can help people in your own way, whether it's reaching out to people online, making inspiring or comforting art, or just being kind to the people around you. That's important too. And if it's all you can give, that's enough.
Same same. My support providers have said Iām not allowed to watch the news because it makes me too anxious and I obsess over the scary stories.
I can only engage in a few very niche groups of politics, and I have to avoid the news too. I focus on making a difference with communication access and thatās the only area I can focus on, if I try to focus on other things too I get overwhelmed and canāt help in any area
normalize speaking "weird".
normalize speaking "bad".
normalize speaking only by key words.
normalize stuttering.
normalize long pauses.
normalize using simple words.
normalize using short sentences.
normalize speaking in 3rd person.
normalize speaking with incorrect grammar.
normalize disorganized speech.
normalize speaking slowly.
normalize speaking incoherent.
normalize eholalia.
normalize word salad.
normalize other "inconvenient" speaking patterns.
let us speak as we can. listen to us.
For anyone who is semi verbal, nonverbal, or otherwise struggles with speech, please know that there are people who will accept your methods of communication. There are people who won't infantilize you for using AAC, communication cards, making noises instead of words, etc. There are people who won't expect you to pick the mask up again when you stop being so 'talkative'. There are people who don't mind waiting for you to sort your thoughts, and are happy to include you in the conversation.
There are people who accept you as yourself, and I don't just mean toleration.
show me your AAC board!!
(includes everyone not just symbol based)
LAMP Words for Life, Proloquo2go, Proloquo4text, Speech Assistant, and MySpeaker!
"you can talk. you don't need AAC. you're fine."
āyou can talk. you donāt need AAC. youāre fine.ā, said a friendās SLP.
I can talk too. so why do I use AAC?
sometimes Iām hyperverbal and oral speech is overwhelming to me, so I use AAC.
sometimes Iām already overwhelmed and oral speech makes it even worse, so I use AAC.
sometimes I need to conserve energy and oral speech is draining, so I use AAC.
sometimes I need to set a boundary and oral speech is unreliable, so I use AAC.
sometimes I need to explain scary medical symptoms and oral speech is unreliable, so I use AAC.
sometimes Iām wearing a mask and oral speech is muffled, so I use AAC.
sometimes itās more peaceful than oral speech, so I use AAC.
sometimes it helps me unmask my autism, so I use AAC.
sometimes it feels right, so I use AAC.
sometimes I need to practice it before I need it, so I use AAC.
sometimes Iām anxious and oral speech is not working at all, so I use AAC.
sometimes my mouth is full of food, so I use AAC.
sometimes Iām in the middle of using my inhaler, so I use AAC.
sometimes oral speech is my best option, so I donāt use AAC, and thatās okay too.
AAC isnāt a last resort or an all-or-nothing choice. use it if and when it helps you, even if you ācan talkā.
I know I wasn't your target audience with the happy meltdown post, but it was really helpful to me. I was telling my psychiatrist that I don't really know the difference between a panic attack and a meltdown (I have both GAD and autism) and she said that a panic attack is when something scares or stresses you into the reaction and a meltdown is when something frustrates or angers you into the reaction. That didn't sound right to me and sounded a little too close to the "meltdowns are temper tantrums" line of reasoning, but I didn't know enough to argue. Glad to know there is more variety there than she made it sound like
Yeah many people think meltdowns always happen either because of overstimulation or because of anger/frustration, since they can be very violent and the reaction seems angry, and many people in fact are angry during a meltdown. But at least in my case meltdowns happen because of a "too much" of everything, no matter what this "too much" is.
I made this
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Credits ( things i used or took ideas from or got helped by )
Idea : from misslunarose
Text : copy paste from autism level real life descriptions ( what the levels are like in a person instead a list of symptoms ) from my psychologist Caitlin
Symbols : from ARASAAC
Help : from my mum who helped me put those parts together to make this on canva thank you
Guys didnt realise this would be confusing that I didnt think to say some stuff so for what this is about
This is written by my psychologist about YOUNG ADULTS 16 - 25 living in AOTEAROA NEW ZEALAND
Different age people will have different experience and different country people will have different experience!
And its not criteria or symptom list or rules about to be each level it is a GENERAL IDEA of what a AVERAGE PERSON at each level looks like in living their life just day to day
And not every one is the average person there is still room for different things inside levels!
If any one can reblog this reblog that says that cause I didnt realise or think to put that stuff in but it confused some one but I know its important now so know this part
This is where i have as a low - moderate needs level 2
Let's see what life will be as a young adult, maybe I'll have a social life then š¤
I find it so interesting when people who I thought were really similar to me regarding social and development and behaviour reblog this, and I realise that they actually are very different š¤
see friends fill it up and want to join the party! spent an hour or two lazy morning/noon on this based on current abilities
was very difficult for me because 1) catatonia (discovered that even though right now don't need 1 on 1 behavioral supervison, still benefit or even need someone to be with me at all times if want to do anything because when alone, catatonia/freeze more disruptive, behaviors & repetitive moving more disruptive, to point where interrupted every few seconds, and interruption last longer than task being interrupted, even though today is good day i think, recently has been good day. recently at partner's place partner present almost always, today partner out so am alone),
2) very not aware of self actually. (do better job when i describe self, like in own posts, because know own thoughts own context what i mean, but have harder time with other people words because not my own... don't know if make any sense but is probably related to own theory of mind struggles).
3) even though this clearest infographic i ever seen, still have hard time understand because hard time understand anything other than concrete examples/descriptions.
which is all to say, this is all high key guess work, almost like playing darts. really do try to guess as accurately as i can, but also don't want to make self more severe than actually am.
so probably, summary is
high level 2 / low level 3 for social communication (DSM 5 criteria A)
(mid?) level 2 for restrictive repetitive behaviors & interests (criteria B, include sensory)?
this all based on current abilities - before regression was less "severe" than this. dont want to misrepresent. most people who know me irl knew me before regression (which make sense actually because before regression, had more social abilities so knew more people), so if saw this probably think am exaggerate. no, just worse than before, variety of factors.
anyways sorry for ramble under wsp's post
edit: updated my image abt the intellectual impairment part because my situation a little complicated and orginally got definition wrong! hopefully make sense??
Green is definitely/at least, and purple is unsure (and all purple has notes explaining). Iām low support overall I believe
need more friends/mutuals like me .. reblog / comment if you talk about the following (or applies to you in general)
- high support needs autism
- language disorder
- using AAC (fulltime or part time)
- traumatic brain injury or neurological disorder
- nonspeaking or semispeaking (different to speech loss)
- autistic catatonia
Pixie be AAC device user is not a young child . and . but all AAC device vocabularies exactly same as the for children . no words for relationships and more āadult ā conversations .
have not seen any AAC device vocabulary have words for any āprivateā body parts . can not tell caregivers about having a problem with some ā private ā body part . no pages for to talk about serious brain ātroubleā either .
we people what use AAC devices are very most likely to be hurt by bad people because them people know we can not tell really what happened .
AAC device businesses need to do better. speech pathologists need to do better , and caregivers , and parents , and guardians . all need to do better .
think hear problem with app store regulation not AAC people , proloquo2go people would add but then app store force rate for adults only if even allow sell AAC at all
am sorry , is not true . Pixie have proloquo2go on iPad too , for long time , is not exception and is not because of app store . Pixie have tested many different actual AAC devices , not just ipad apps , but the really expensive dedicated assistive speech generating medical devices what need health insurance to get . not a one had the words Pixie talk about in this post , or adult vocabularies available .
Pixies speech pathologist agree said Pixie is right , not a one they ever seen either .
them ALL need do better .
Also TD snap on iPad and has "adult" words and phrases. Not that in depth but still have things like sex and phrases about sex and body parts (on UK page set) So CAN get stuff like that on app store. But most app don't.
And that still not excuse for not app store things like dedicated device.
So does grid. And proloquo (not proloquo2go)
Because semiverbal, we dislike using āloosing speechā to describe when we have low verbality.
Donāt want others assume that weāre fully verbal with speech loss episodes. We are not. So we use āloosing grammarā and āloosing languageā to describe when verbality changes.
Loosing grammar- when one can speak/type but the language produced does not match the speakerās usual grammar. Noun: Grammar shutdown
Loosing language- when one cannot speak or write or otherwise create any understandable sentences or words
For us loosing grammar just happens for no reason but loosing language is usually due to stress, dissociation or pain.
aac systems make me anxious
i am very easily overwhelmed by over cluttered pages and i cannot find something functional that does not overwhelm me
i also seem to be having issue with sound in general i just donāt even want to hear a voice even if it is my words
typing is very easy for me i just wish i could text everyone in the world
Typing can be great option! I have friend who type and show people. He never use voice output even tho app he uses can. And that's just fine! I use same typing app as him sometimes,, although usuallt prefer symbol and I usually do voice output.
Starting My AAC Journey
After some recent experiences, I've come to a similar awakening and realization as I had when I first acknowledged that my sensory needs 1) exist and 2) are worth honoring. My communication needs, which I have long neglected and suppressed, exist. They are worth honoring. It's due time I finally accepted this part of myself.
Now I begin my journey to respect my communication needs by using AAC. I'm looking to connect with other semispeaking and nonspeaking people who use AAC, either full or part time, to learn more about using AAC. I plan to share my self-discovery here throughout this process.
Hello! I use AAC part time. I use LAMP Words for Life and Proloquo4text mostly. I have a lot of AAC knowledge due to it being a special interest of mine! I am also @always-learning-and-growing
I love using AAC , but sometimes I get frustrated that it's not as fast as Mouthwords . I want to get better , but I'm very impatient . I know I need to stick with it but it's hard . I also wish that people were more patient. I just want people to accept my AAC use regardless of if its palatable to speakies.