zebulontheplanet

[zebulontheplanet]

Hello

I am so sorry if this not good to ask/ the right place to ask (idk how tumblr works yet). Please lmk if so and i will not do it again /gen.

I am concerned I may be exhibiting signs of catatonia. I know it is not smth to be self dxd and is very serious but I can't find a huge amount of useful things online and idk what to do so i thought id ask you so i can get a better idea of whether to seek professional help seeing as you have lived experience with it. I hope that's okay

I have slowly been losing skills over the past year (not in burnout). Ive lost a lot of maskjng ability, I find speaking harder and often talk like a younger child despite my advanced vocabulary as a result, I get stuck on tasks and now need physical or verbal prompting to do a lot of tasks like bADLs i didnt need this for before (not counting iADLs bc i dont need to do those because im 15, nearly 16, altho i doubt they would be better). My sensory issues have worsened and so have my meltdowns and shutdowns (which were already not great). I have episodes where I feel like I literally cannot move and my body won't move or will only move very slowly or jerkily. It is like it won't process what my brain is telling it to do. I also stim more often and far more noticeably. Idk who to go to. :(

What other overall areas does catatonia cause decline in - for example does it cause social skills to decline, etc? I've noticed my social skills worsening quite a lot too which is why i ask.. the stuff ive found online can be a bit vague/ confusing or not what i want to know.

I'm scared because idk what is happening and it's really confusing. You don't have to respond to this and I'm sorry for rambling.. is it worth going to a professional? Can this kind of thing be caused by other stuff? If I were to go to a professional it would probably take ages because the waitlists are so long here. I'm just really confused and kinda scared and I dont want to lose more skills :(

Hello, so regular catatonia is different from autism catatonia with regression. Catatonia is very serious, and if you believe you are having it then PLEASE seek out medical attention. Autism Catatonia is usually regressive, and gets worse with time without treatment. Which, I am personally experiencing and it’s the reason I’m on medication for it.

Catatonia is a very serious condition, and can be life threatening in some. So it’s important to know the warning signs and contact a professional. Do NOT wait and contact someone as soon as possible.

Regression is hard, but regression doesn’t mean catatonia. So if you think you’re experiencing regression then that doesn’t automatically mean you have catatonia, if that makes sense. Catatonia for me is episodes of complete freezing, and episodes of slowness. Even outside of tasks I have catatonia. Although tasks are a huge trigger for my catatonia.

Please don’t try and self diagnose it and seek out medical help. I hope you have a lovely day and get the help you need. ❤️

#zebrambles #autism #autism catatonia #catatonia #asks and answers #thanks for the anon

[zebulontheplanet]

I’ve had a really good experience at college so far. I was originally assigned to a room that was made for regular students and therefore wasn’t wheelchair accessible (even though I HAD told them that I was a wheelchair user and needed a wheelchair room) and they fixed it and moved me to a different dorm hallway that’s completely a wheelchair accessible dorm. I am now in the dorms that are completely made for wheelchair users and other people who need accessible rooms. Which is awesome because I’ll be around other students with similar needs as me! My room is absolutely huge and even has a bed that has a remote controller so it moves up and down. Like a hospital bed!

Everyone was very accepting of my AAC, and even complimented me on how cool it was. Although, the nurse did make a comment about me hopefully getting my voice back which made me cringe a bit, but it was understandable because of how my mom worded it and made it seem like I’d hopefully get my speech back. Which…is a whole conversation. I did have to explain that yes, I was the one they’ve been talking to on the phone and not my mom, because the nurse hadn’t been the one to talk to me on the phone and was a bit confused on how I made phone calls, which was an interesting conversation!

Overall, everyone is very accepting here and I’m very happy. Although it’s definitely an adjustment.

#zebrambles #college #wheelchair life #ambulatory wheelchair user

[zebulontheplanet]

So, as some of you know, I start a college program this week. As I’m writing this I’m currently getting ready for the three hour car ride to go there. Because of this, I will probably be more inactive until I get settled.

I will keep y’all updated throughout the week, but yeah! I hope everyone had a lovely day and I can’t wait to take you guys with me on this new chapter of my life.

#zebrambles #college #college program #leaving for college

[zebulontheplanet]

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

[zebulontheplanet]

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.

#zebrambles #verbality #verbality terms #asks and answers #thanks for the anon! #have a lovely day anon!

[zebulontheplanet]

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.

#zebrambles #asks and answers #special interest

[zebulontheplanet]

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.

#zebrambles #intellectual disability #asks and answers

[zebulontheplanet]

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%).

[zebulontheplanet]

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.

#zebrambles #autism #actually autism #actually autistic #nonverbal #actually nonverbal #aac #angry rant

[zebulontheplanet]

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.

#zebrambles #aac #asks and answers #sending you love and positivity!

[zebulontheplanet]

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.

#zebrambles #autism #asks and answers #actually nonverbal #speech loss episodes

[zebulontheplanet]

Lots of asks today 😅

I’ll get to them all when I can!

#zebrambles

[zebulontheplanet]

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!

#zebrambles #asks and answers #intellectual disability

[zebulontheplanet]

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!

#zebrambles #asks and answers #thanks for the question!

[zebulontheplanet]

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!

#zebrambles #asks and answers #thanks for the anon!

[zebulontheplanet]

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".

[zebulontheplanet]

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