zebulontheplanet
Hello Again
Zeb | He/They | |Transmasc/queer| |AuADHD| |Disabled| |20| |Intellectually disabled| |AAC user| [Icon description: Picrew image of Zeb a Masculine presenting with black hair, brown eyes and sweater. Holding up the peace symbol with fingers. Background is green.] [Header Image: A photo of several branches of cherry blossoms]
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How I do the pharmacy is really interesting. It’s really one of the only medical places l can do really independently. My parents sit in the car and sometimes my sister comes in with me if I really need it, but the pharmacists know me and are really helpful and try and make it as independent for me as possible.
I go in, and proloquo4text has the option of enlarging my text. I usually do it on my phone because it’s easier than the large tablet I carry around! So I put down my name and date of birth and hand them my phone. They take my phone, put in my name and date of birth into the system. They pull up my name and give me my meds. I’ve never had an issue. My medication is always sorted out and everything, sometimes it’s messed up a little? But then my mom calls and gets it figured out.
They give me my medication and that’s that! I pay with my parents card if there’s any co-pays and I go on with my day. It’s super easy and I can do it independently! My mom looks over what I got and that’s it!
It’s just a really unique experience and very easy for me. I love how the people around me make things as easy as possible for me and try and make it smooth for me.
#zebrambles#autism#actually autism#medium support needs#actually autistic#independence#actually nonverbal#AAC
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hey do you have any resources for understanding the words for different types of speaking? nonverbal, semiverbal etc-type things.
am struggling a lot with words but dont have access really to community about these things to learn from.
thank you and sorry u must answer this a lot already, i had a search of ur blog but no luck
Hello! I’m don’t have any specific resources, but I can just tell you because I know lol. Anyways! Here’s a list of verbality terms and what they mean!
Nonverbal/nonspeaking: A term to describe people who can’t speak at all or who can speak VERY little. Permanently.
Minimally verbal: A term to describe people who can only speak 20,30,50 words (very debated on the exact number). Permanently.
Semiverbal: A term to describe people who struggles greatly to communicate or has a limited vocabulary. Permanently.
Demiverbal: A term to describe people who are in between semiverbal and fully verbal. Who don’t quite feel they’re semiverbal and don’t quite feel they’re verbal. Permanently.
Verbal: A term to describe someone who has a normal range of speech.
Hyperverbal: A term to describe someone who has an extreme vocabulary and talks more than the average person.
Hope this helps anon! If you have any further questions then let me know! I’ll also be posting this in my Frequently asked questions as well.
If I got something wrong then please correct me and I will change it.
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genq, I'm having this question a lot but isnt special interest an autistic/ or at least a neurodivergence only term?
idk, i feel like irs been watered down to just liking something and it feels so, infuriating. special interests are not just liking something a lot. i just wish people quit watering down terms like this :/
Hello! Special interest is an autistic term.
I haven’t heard personally of people using it outside of autism, but I honestly wouldn’t be surprised. Special interests are very important to autistic people, and often times they’re apart of our identities. So I can get how it would be frustrating to feel like people are watering it down.
I’m sorry you feel that way! But yeah, they are an autistic term. I hope you have a lovely day anon! I don’t have much to talk about this haha.
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hey, I have a question about ID. how does being ID affect your life? ik this is a really broad question but im trying to learn more about ID since I don't have it, and I've just really been wondering how it actually changes a person's life.
Hello! This is a hard question because honestly, ID overlaps a lot with other disorders. It’s like a spicy add on that I have. Most of what I will say is from my own observation, the observation of others, and things my neuropsych has said.
ID affects your problem solving skills, adaptive functioning skills, social skills, judgement, learning skills, and ADL skills.
For learning, it’s a constant struggle. I’m severely behind then my non-intellectually disabled peers, and have to constantly work to just keep up a little bit. Learning itself is extremely hard for me, and while others may be able to process things within 2-3-4 times of being exposed and shown it, I might need 5x that amount of time being exposed and shown it. My learning is a complicated subject, because of how behind I am in most subjects. History? Forget it. Algebra? Forget it. I just can’t make those things click on my brain. Dates, memorization, faces, titles, etc etc is a no for me and takes so much time and effort. I have to also constantly work to not regress in skills, so I’m constantly learning to not lose the skills I have gained throughout the years.
For adaptive skills, that includes things like self care, communication skills, self-direction, etc etc. I struggle with all of these. If someone communicates something to me like a time and place or directions, or something along those lines, they have to write it down or it can get scrambled in my head, then forget it, the whole things is mixed up and everything is wrong and I can’t get to where I need to be. Relying information to other people is also very hard for me because of this. Information gets switched up, lost, etc. it’s very hard and I have to have things written down at all times.
For judgement, my judgement is severely impaired. I’m known for staying in relationships (platonic, romantic, etc) way past their due date, and I’m often manipulated and abused in relationships and still stay. I often times have to get my parents involved and for them to help me through it. It’s very tricky and difficult to deal with, because my brain just doesn’t get it, and I will stay in relationships even if they’re harming me.
For problem solving skills, that’s hard for me too. Solving situations, etc etc is really difficult, as well as even something simple as problem solving games, i suck at those and they’re so confusing to me. Puzzles? Forget it. Sudoku? Forget it. Can’t do it at all.
There’s probably a lot I’m missing, and I’m probably not stating it all, but this is just what comes to mind! I hope you have a lovely day and feel free to ask further questions.
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I've reached 35 responses! They're very interesting, but the sample size is still small, and I don't think it's at all representative of the Tumblr autism community. If I can't reach at least 100 responses, I don't think I'll be able to analyze Tumblr community views on support needs in depth. I'll still post descriptive statistics for the overall sample, but I won't have the statistical power to do anything else.
I'd really appreciate if everyone could help by taking the survey and reblogging this post to their followers!
As a reminder, the survey is meant to understand how people use support needs labels. For example, what makes someone low support needs and not moderate support needs? The survey also helps show what the community is like in general in terms of demographics and experiences!
A summary of the current survey results are under the Read More. Again, especially if a community that you're in is under-represented, please help by spreading the survey link! I'd especially love to hear from more people AMAB, racial/ethnic minorities, people who are not yet diagnosed or were diagnosed as adults, and higher support needs individuals!
Age: Most participants are young; 60% are under age 25%, and 20% are under 18.
Gender: Over half of the sample is AFAB nonbinary, almost 1/3 is trans men, and almost all of the remainder (14%) is cis women. Only 2 people who are AMAB have taken the survey.
Race/Ethnicity: Non-Hispanic White people are very over-represented, making up 82% of the sample.
Diagnosis: 57% are professionally diagnosed, 20% are informally or soft-diagnosed, and 14% are seeking a diagnosis. Only 9% are neither diagnosed nor seeking a diagnosis.
The most common diagnoses are ASD with no level (33%), level 1 ASD (25%), and "mild autism" (13%).
16% were diagnosed before age 8, 24% between ages 9 and 15, 32% between ages 16 and 18, 12% between ages 19 and 25, and 16% over age 25.
Autism Support Needs: The most common self-identified support needs label is "low-moderate" (43%), followed by low (23%) and moderate (14%). Most would benefit from but do not need weekly support (31%), only need accommodations and mental health support (17%), or rarely need any support (6%).
Autism Symptoms: On a severity scale of 0 (not applicable) to 3 (severe), the average is 1.7 overall, 1.8 socially, and 1.7 for restricted-repetitive behaviors. The most severe symptom is sensory issues (2.1), and the least severe are nonverbal communication and stimming (both 1.5).
83% are fully verbal, and 97% have no intellectual disability.
38% can mask well enough to seem "off" but not necessarily autistic. 21% can't mask well or for long.
Most experience shutdowns (94%), difficulties with interoception (80%), meltdowns (71%), alexithymia (71%), echolalia (69%), and autistic mutism (66%). Very few experience psychosis (14%) or catatonia (11%).
Self-Diagnosis: 20% think it's always fine to self-diagnose autism, 29% think it's almost always fine, 31% think it's only okay if an assessment is inaccessible, 71% think it needs to be done carefully, and 11% think it's okay to suspect but not self-diagnose.
15% think it's always fine to self-diagnose autism DSM-5 levels (including if the person has been told they don't have autism), 15% think it's fine as long as autism hasn't been ruled out, 21% think it's almost always fine, 18% think it's only okay if an assessment is inaccessible, 36% think it needs to be done carefully, and 36% think it's okay to suspect but not self-diagnose.
26% think it's always fine to self-diagnose autism support needs labels (including if the person has been told they don't have autism), 29% think it's fine as long as autism hasn't been ruled out, 37% think it's almost always fine, 29% think it's only okay if an assessment is inaccessible, 43% think it needs to be done carefully, and 6% think it's okay to suspect but not self-diagnose.
Disability: 71% feel disabled by autism, 17% feel disabled by another condition but not autism, and 11% are unsure.
Comorbidities: The most common mental health comorbidities are anxiety (68%), ADHD (62%), and depression (56%).
The least common mental health disorders are schizophrenia spectrum disorders (0%), bipolar disorders (3%), tic disorders (6%), substance use disorders (6%), personality disorder (9%), and OCD (9%).
The most common physical health comorbidities are gastrointestinal issues (29%), connective tissue disorders (29%), autoimmune disorders (24%), neurological disorders or injuries (24%), and hearing/vision loss (24%). All others are below 20%.
Overall Support Needs: When considering comorbidities, the most common self-identified support needs label is moderate (37%), followed by low-moderate (31%) and low (17%).
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I get so frustrated when talking about the fact I’m nonverbal and people go “well you type good so you’re fine” and that makes me so frustrated because like…typing doesn’t replace the fact I can’t speak! It doesn’t replace the fact that I’ve had hours upon hours of intensive therapies to get me to type the way I can, to express myself the way I can. And some were emotionally damaging. That doesn’t go away.
It doesn’t take away the ableism I face. Or the fact that if im trying to communicate with someone, our disabilities could collide and make it difficult to communicate. It doesn’t change that. And it doesn’t change the continued regression I am going through. It doesn’t change any of that! It doesn’t change that I’m constantly frustrated because my device is so slow compared to my thoughts. Or that other people find it very slow and get annoyed with me.
It’s honestly frustrating when people say this, because although I’m privileged to be able to type in the first place, that doesn’t change the ableism, frustrations, and therapies that I’ve gone through. I’m not “just fine” I’m constantly struggling to try and adapt to a situation and world that wasn’t meant for me. That is continuously ableist.
Im privileged, but that doesn’t mean I still don’t struggle.
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hello! :) do you have tips on overcoming anxiety using aac device with people who already seen you speak? i have an appointment with a doctor that ive going for a year and hes never seen me using aac and im pretty nervous about it because i dont want to deal with him asking "what wrong" or if i can "talk with my "real" voice'... i know i dont need to justify using my device and i really want to not care because even though im minimally speaking, my speech isnt functional at all and i just want to be able to use whats going to help me without feeling like im "taking too much space or too much time" for being slow at using my device.
Hey anon! First up, I want to wish you the best of luck! I hope this all goes well and you have a good experience.
Now for what you can do, honestly. Practice beforehand. Go out in public and practice using AAC! Use it in stores, coffee shops, etc etc. just use it as much as you can with the public. It’ll help build your confidence! Customize your device. Make it yours so you’re proud and confident with it! Realizing that your device is an extension of your body and not just simply a tool really really helps. I wish you luck!
Also, minimally verbal doesn’t mean that you speak minimally. It means you have minimal words to say. So someone who is minimally verbal may have 20,30,50 words (very debated topic on the exact number). So if this isn’t you then maybe look into other terms? Like demiverbal, semiverbal, etc etc.
Have a lovely day anon! Wishing you the best.
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how did you know you’re nonverbal and not just having speech loss? speech loss can last a long time
Hello! This is a question that’s been on my mind for awhile. And honestly, I’m very hesitant to answer it because I don’t want to say the wrong thing.
In short terms, I’m not sure. Im taking things one day at a time. But, there are some things that make me believe this isn’t just a verbal shutdown.
1. I’m not having anything that usually comes with a verbal shutdown. I’m not overwhelmed, stressed, burnt out, etc etc. I’m very neutral in life and do not feel any of these are causing it.
2. It’s been a very long time (over a month), and I’m not showing much, if any improvements or indications that I’ll get my speech back. Could I theoretically wake up one day and magically be able to speak again? Sure, but that just isn’t really reality. Even if I did start to get speech back, it definitely wouldn’t be the same as being verbal or even semiverbal again.
3. Again, verbal shutdowns usually don’t last over a month.
4. Doctors around me are stumped. And don’t know what’s wrong with me. Anxiety, trauma, selective mutism, etc etc have all been thrown my way. I’m even on Ativan to maybe help get my speech back, but I’ve taken it a few times so far and haven’t noticed anything really.
But yeah! Hope this helps! Again, nothing is certain. Life isn’t certain. I could wake up tomorrow and have some speech back, but that’s very unlikely. I do believe my speech loss is caused by autism catatonia and regression, but there isn’t much research about that and I’m being treated with one of the more comma medications to treat that and experiencing nothing from it.
I think like everyone, there’s always the hope that maybe one day you’ll be able to speak again, but again, that’s just hope. I don’t know if I’ll ever be able to speak again, but I’m here right now, and I can do what I need to do right now.
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Lots of asks today 😅
I’ll get to them all when I can!
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I know this is a really personal question so please ignore this ask if it's too uncomfortable, but I was just wondering out of curiosity what your IQ is?
Not a personal question at all. I’m very open about it, you’ll find it even in a few of my past posts lol
My IQ the last time I was tested was 70! So bordering between borderline intellectual disability and mild intellectual disability. Depending on the place and their guidelines, I’ve been diagnosed with both. So i just kinda say I’m intellectually disabled and leave it at that haha.
Have a lovely day anon!
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Hi, I'm not a native English speaker, you mentioned you are a AAC user, I couldn't understand and find out what it is. Could you explain, please? Sorry if I'm being too sneaky
Hello! That’s ok, I can definitely explain.
AAC is basically anything that isn’t physically talking. So gestures, pointing, white boards, texting, High tech devices with symbol based buttons, high tech devices with text to speech, picture books, etc.
I use a high tech device. I currently use two apps, one is proloquo4text, which is a text to speech app. So I just text what I want into it, and it says it out loud! Another is called Speak for yourself, it’s a symbol based app. So I press symbols to build sentences and press a speech bar and it says what I want out loud!
Hope this helps. I can further explain if you have anymore questions. Have a lovely day!
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how did you know you have an intellectually disability?
A neuropsych told me after doing extensive testing. That’s really the only way you can know!
Have a lovely day anon!
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we are so ableist about memory. people with good memory take for granted the fact that they can recall as much as they can, and use that to taunt, guilt and threaten people with memory issues. many neurotypes and mental illnesses cause memory lapses. traumatic brain injuries can cause memory lapses. brain cancer can cause memory lapses.
even if your memory is good, it's not right to guilt someone because they can't remember something. trust me, people with memory problems are desperately trying to remember: it's just that we literally can't. it is a very literal "i can't remember".
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When I talk about visible autism on my blog, I’m usually not talking about those who are clocked as quirky and weird. Although that’s completely valid, I’m not talking about them. I’m talking about those of us who are VISIBLY autistic. Those of us who are clocked as those autistics. Who are clocked immediately as having something wrong with them. Those of us who are named as slurs. Who are yelled at. Who are attacked. Who are glared at, pointed at, stared at, pitied. Those of us who are automatically assumed to be with caregivers. Those of us you see talked about in medical journals and on the news as “inspiration” when we graduate or get invited to prom.
This is us. This is who we’re marked as. This is who we are seen as. We are seen as less than, as animals, as objects, as “inspirations”. When we accomplish something it’s usually not seen as our accomplishments but as the accomplishments of our caregivers and support staff.
I get so mad when someone comes onto my blog, MY blog. Me. A visibly autistic, nonverbal person, and doesn’t even look at my tags or pinned post and says “Omg me too, I’m seen as quirky and awkward, I’m visibly autistic 🥰” and like…go you but I’m not talking about you. I’m not talking about “low masking”. Im talking about LOW masking. No masking or very very low masking. Those of us who are immediately seen as autistic.
And it’s frustrating. It’s frustrating when people come into my blog and say this because, you DON’T get it. You just don’t. You don’t get what my life is like, what my experiences are. What it’s like to be LOW masking or no masking. You don’t get that. And yet you try and squeeze yourself in. And that hurts. It hurts to have people who won’t ever understand this squeeze themselves in. Stop doing this.
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Just a little something I've discovered after talking to a few people irl, some autistic some not. That the whole "I can totally relate to this [quite severe problem/ presentation of autism etc] for [in comparison minor, so non comparable reason]" thing that constantly happens to (us as) MSN & HSN, visibly autistic, semi- & nonverbal, etc ... online is like. Seen as absolute bullshit by everyone ive told about it. Everyone is like "well of Course this isnt the time for them to interrupt / talk over / make it about them / etc. It doesnt make sense to do it, it's not the same thing, etc".
It's hard sometimes when you feel like everyone just wants to erase or (mis- ?) appropriate what you go through and work so hard to share for awareness (etc), but this is just some very vocal people who no one but their own circle agrees with that this is okay behavior
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When I talk about visible autism on my blog, I’m usually not talking about those who are clocked as quirky and weird. Although that’s completely valid, I’m not talking about them. I’m talking about those of us who are VISIBLY autistic. Those of us who are clocked as those autistics. Who are clocked immediately as having something wrong with them. Those of us who are named as slurs. Who are yelled at. Who are attacked. Who are glared at, pointed at, stared at, pitied. Those of us who are automatically assumed to be with caregivers. Those of us you see talked about in medical journals and on the news as “inspiration” when we graduate or get invited to prom.
This is us. This is who we’re marked as. This is who we are seen as. We are seen as less than, as animals, as objects, as “inspirations”. When we accomplish something it’s usually not seen as our accomplishments but as the accomplishments of our caregivers and support staff.
I get so mad when someone comes onto my blog, MY blog. Me. A visibly autistic, nonverbal person, and doesn’t even look at my tags or pinned post and says “Omg me too, I’m seen as quirky and awkward, I’m visibly autistic 🥰” and like…go you but I’m not talking about you. I’m not talking about “low masking”. Im talking about LOW masking. No masking or very very low masking. Those of us who are immediately seen as autistic.
And it’s frustrating. It’s frustrating when people come into my blog and say this because, you DON’T get it. You just don’t. You don’t get what my life is like, what my experiences are. What it’s like to be LOW masking or no masking. You don’t get that. And yet you try and squeeze yourself in. And that hurts. It hurts to have people who won’t ever understand this squeeze themselves in. Stop doing this.
#zebrambles#autism#actually autism#medium support needs#actually autistic#nonverbal#actually nonverbal#nonspeaking#low masking#no masking#masking#higher support needs#high support needs#angry ramble#anger
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