#autism regression

[antlerkitty]

What people online think autism regression is: I unmasked and now appear more autistic!

What autism regression actually is:

Fear

Losing skills you may have just gained

Losing control of yourself

Depression

Losing hopes and dreams for the future

Loss of communication 

Loss of usable coping mechanisms

Feeling like your brain has changed completely and struggling to adjust

Self-blame

Confusion from those around you

More meltdowns

Feeling guilty for needing more support and care

Isolation

Feeling unprepared for the future you never planned for

Having to deal with decisions you made when you thought you were never going to get worse, that you can’t deal with anymore (pets, home, job, school)

Increased abuse and neglect

[zebulontheplanet]

You don't have to answer but what does it feels like to be nonverbal? Do you have difficulty moving your mouth to make words or just can't at all? Please share your experience of what it's like to be nonverbal! I'd love to hear about it

Hello anon! I’d be glad to answer this question.

So, I have a complete brain mouth disconnect. Meaning my brain has the words, my mouth just doesn’t work with my brain to get those words out.

The best way I can describe how it feels is how it felt when I could still talk some. I remember as my speech started getting worse, and I would constantly get the feeling that my mouth wasn’t mine. It felt foreign, robotic, like it wasn’t mine at all. Like someone had attached a mouth that didn’t belong to me. That said things I didn’t want to say. That couldn’t say things I wanted to say. It felt horrifically alien.

I still have that feeling, but much less since I’ve lost my speech completely. It’s really weird to me. Because I’ve always struggled with speech in some way, but everyone around me assumed I didn’t at all until later into my regression. I was simply marked off as different labels. Rude, quiet, etc. All assumptions just because my mouth wouldn’t work with me. It felt incredibly trapping. I felt trapped within my own body, and I still do. Just in a different way.

When I lost my speech, I was devastated, but also relieved in some ways. It was like a weight being taken off my shoulders. No more being marked rude for my simple sentences or because I used the wrong tone or because I said something wrong without realizing. There was none of that. At least not like now.

I hope this helps! Have a lovely day anon!

[autisticdreamdrop]

autism regression needs to be talked about more.

you can lose so many skills. lose the ability to mask. lose the ability to control stimming. lose the ability to use motor functions. lose the ability to take care our yourself.

it's so hard.. it's so scary.. we just got able to write again and it's so bad. you can come out of regression, you can gain skills back in some areas or all areas affected but it's so hard and you can always be forced back. it's not fair.

[lilqu33rboi]

autistic burnout sucks because what do you mean eating corn makes me feel like I want to cry and eye contact is painful and I can not even take a shower with out having a shutdown ???

[perplexingluciddreams]

It is a strange feeling to be an older sibling, yet be so "behind" your younger sibling in every way.

My sister and I are only two years apart, so the developmental gap between us was smaller when we were younger. But it seemed to keep growing larger and larger with every passing year. (And became even more exaggerated with my regression).

I always wished to be the older, grown up, responsible one. I just can't, I have never been able to. I sometimes feel like an awful brother for being unable to be the "big sibling".

I have more feelings on this, but not enough words. It's just something I have thought about a lot lately.

[arquaticdreamer]

Cloud hates every time bio toxic family keep asking Cloud to change AAC voice to cookie monster, or some silly fun voice. Like what the hell!?!? It's not a toy AAC is my voice. Stop trying to grab and play with my AAC.

[dreamdropsystem]

it is come to our attention that we have been using a wrong word we've been saying that we have had skill loss through autism regression but we recently found out that you can only have autism regression as a young child and so we've lost skills from burnout not autism progression we're gonna make a short post about it soon

[octobercowboy]

I would like to talk about the spoken word accessibility feature that has been added to the ios 17 update as someone who is semiverbal. I have not talked much on this blog in particular about what semiverbal means for me.

- I have difficulty getting words out

- I have difficulty knowing what words to say or what order

- i have difficulty remembering words and how I am meant to use them

- a lot of my aac use is by looking at words in sentences to copy and paste to create my own

- another part of my aac use is simply looking at words until i can figure out what i need to say.

all personal experience divulged, pros and cons

pros:

- it is free for apple users

- easy look up (i do not have to find an app, it is built in by triple clicking the home button once on (for me))

- you can save frequently used phrases

- you can copy and paste into the text box

- it allows me to communicate in more languages as i know how to write better than talk

- as someone who can verbally speak at times i was able to create a voice that sounds like my own speaking voice

Cons:

- there is no photo/word display/buttons

- there is only an empty text box

- difficult on high need days when need to scroll through words to find thought

As it is so new I don’t have a lot of experience with it but I can update you as my experience continues. I saw nobody talking about this and thought I would share my personal experience

[su1c1d3wh0r3z]

love that my recent reblogs were posts i found while scrolling thru here as a way to ignore my mother yelling at me :)

[nonspeakingkiku]

Kiku has been thinking about skill regression recently. For a while Kiku hadn't been able to place when it had happened outside of Kiku's speech. But recently Kiku realised that it happens to Kiku sometimes, usually after a bad night (couldn't sleep, nightmares, ect.) or after really bad meltdowns.

It usually but not always follows this pattern for Kiku: Has bad night or meltdowns, can't make any noises or making noises is very hard, and Kiku has to figure out how to make sounds again. And sometimes lose sounds for a long time (think longest time with little to no sounds was two weeks).

But sometimes it's not sounds, sometimes it's tasks Kiku has done lots of times. With those it's less like Kiku can't remember the steps to do the things(although the steps often get scrambled and out of order), and more like Kiku can't remember how to move to do the thing. This ended up with Kiku usually asking partners how to do the thing, which partners usually respond with "Like you always do" (which is understandable because these are things Kiku do a lot). But Kiku didn't know why this was happening until recently.

And sometimes it happens suddenly.

When it happens suddenly it usually doesn't last long (or I get distracted and don't think about it for a while. This often happens when stimming. Kiku will be stimming and then body will do something else and then the stim was doing before is just gone, don't know to do it again or even what it was.

Anytime lose a skill it's really scary and don't know when or if the skills will come back. The most recent time this happened Kiku lost a sound for like a week and only recently got it back.

Kiku is trying to find resources on autism regression, especially resources that aren't toddler focused.

But if other autistics who have experience skill regression or late autism regression want to share this post with their experiences maybe we can make our own resource.

[sesamecrackers]

oh woa was about to post first new post in mind saying havent posted in few days but actually posted yesterday according to tumblrb😭 time feel so weird. maybe cause i been struggling much more with like moving and task starting and thinking than usual like much more, not necessarily mobility issue i think its more autism late regression issue and such but its been getting super difficult

[antlerkitty]

Want to go out more. Do stuffs. Go in places.

Just so hard. Heart rate goes up, makes me dizzy. Overwhelm makes me dizzy also. Spin and walk in circles in store and don’t stop or respond well to distractions until it time to leave. Went in Rite Aid without my sensory aids (just comfort objects) and started crying and feeling very overwhelmed even though we were the only ones there and the music wasn’t blasting. Even though was big stimming.

Even now, struggle to leave room for too long because it’s overwhelming, and need it lit quite dimly or feel sick. Need sensory aids just to chill in bed and watch a video. Never used to be this way :(

Regression just… so hard to accept. Why it continuing!? I know it somewhat common for HrSN folks to have significant late regression. But why me!? Even just going outside genuinely difficult now and can trigger meltdowns at times.

[zebulontheplanet]

Autistic burnout vs autistic regression

Autistic burnout has been described as a phenomenon that happens when you get burnt out. Leading to loss of skills, exhaustion, and extreme fatigue. But what’s it called when you aren’t burnt out. When you do lose skills but aren’t fatigued and didn’t mask that causes burnout?

It is often debated on if autism regression can happen in adults and teens. I would like to remind people that autism regression isn’t researched a lot, so forget about teens and adults.

Autism regression in teens and adults, also referred to as late regression, is referred to as the phenomenon that causes sudden decline in social, developmental, and language without any underlying cause.

Difference between the two? Burnout is caused by burnout. And does get better with accommodations, self care, and time. Regression isn’t really known to have a cause, and can only be fixed with professional help and time.

I know many of my friends who have gone through regression, yes, burnout and regression do have similar symptoms, however are very different. Stop saying regression isn’t real.

Please feel free to comment, correct me, etc.

[autisticdreamdrop]

autism things 180

losing the ability to mask from autism regression

[wronggalaxy]

Am I stupid? Like genuinely? Because I thought I was smart because I used to be in advanced reading classes and stuff, but I don't think I am anymore.

I struggle with reading and writing a lot of the time.

I only know how to add, subtract, multiply, and divide and not very good at that, even with small numbers.

Bad at science concepts.

Only know special interest history stuff, and even get that stuff mixed up.

Talk 'like a toddler' most of the time.

Spend like 5 minutes on every sentence type online(less on this cause brain feels extra cotton-y, but still lots time).

Don't know names of symbols except period and comma.

Etc.

Is this autism regression or something else?

Don't want to lose writing skills more. I'm an author. Only way to make money. Need to survive.

Family not safe, no carer, no money for carer. Can't college, can't work, can't get diagnosis.

This impossible.

(Maybe have learning disability, no know)

[perplexingluciddreams]

At what point of not being able speak did you consider yourself nonverbal?

this is a difficult question to answer. emotionally difficult (because this topic is hard to think about and i have strong feelings but i don't know what they are). and difficult because words are really hard, and memory is not reliable.

i will do my best. this answer will be long and rambly because i feel the intense need to be as clear as possible. this makes me very very anxious. (sorry in advance for how long).

i can't give an exact timeline because i don't barely have awareness of time. i also can't fully trust/rely on my memory. it gets twisted and muddled and fuzzy. i will try to stick to what i know is fact true.

i still have the same language issues of my whole life, so i never know if the words match my meaning!! it is very stressful when i know i wrote things in the past and have to "correct" past self. i have written a lot on this topic because i really want to be able to explain it to people - but a lot of what i wrote isn't actually true or correct. not because i intentionally lie, just because i simply don't have enough ability for words. especially when it is all this complex.

firstly to clarify, my speech my whole life was never good. reasons is combination of several things:

unreliable speech (intend to say one thing, another come out. or intend to say nothing, and something come out) because body not fully under my control

compulsive scripting because it was LOUD in my brain and got pushed out without meaning/wanting

language issues meaning i said words that didn't match up to what i meant (even when i was trying and was more in control of mouth). i didn't understand the words coming out my mouth.

language issues meaning i could only speak in learned/memorised scripts. occasionally from my own mind, majority "borrowed" from other people. i knew how to match a script with a situation or question, but i didn't comprehend what the script meant so i very often said the opposite of what i was thinking/feeling. (sometimes i knew words and my meaning didn't match but i didn't have the right words. and if i had nothing else to say my body would take over and blurt out whatever script was closest to the brain-to-mouth track).

smaller periods of skill regression that happened often throughout my childhood. affecting lots of skills and areas (not everything all at once, more like repeated backsliding in each skill/area, usually when i focused on bettering a different skill/area. brain just doesn't have capacity). this including affecting speech and communication.

i have said in the past that my speech declined over a long period, and even said an age range. but honestly i don't know how true that is. my memory could be really screwing with me, so i can't say that for certain. i just know it was always bad, and then it got worse.

i think i was 16 nearly 17 when the big change came with my speech, because of regression. i had other skill regression, but speech was the biggest most obvious affected area. i can't describe how it happened or what it was like. i have tried in the past, but like i have said, it is mostly not accurate despite my attempts.

other people can describe about what it seemed from the outside, but i often get upset hearing that because it sounds so different from my experience/reality. logically i know it is true that it looked that way to someone else seeing the outside of me - but my brain can't accept it as truth because it won't fit in with what i know about my internal experience. so brain rejects it as "lie".

growing up before the big regression, i had a strange and complicated experience with speech and communication. back then, i never put any specific word to it. i just knew it was so so so hard. and so so so upsetting.

during the period where my experience of speech changed due to the big regression, i was searching around for words to "borrow" to try help explain what was going on. for both myself and parents. that is when i learned about words nonverbal, nonspeaking, semiverbal/semispeaking, etc.

but still i didn't think any of it really fit. i have used the word "semiverbal" to try put label on my growing up experience of speech, but it still even now doesn't seem right.

i didn't use word nonverbal or nonspeaking for myself until my speech was 100% gone, no intelligible words. and then i first only used it online, simply because it is a quick easy one-word way to explain "i can't speak at all". and i always gave expand information on my exact situation of late regression and losing speech - i felt like i was "lying" if i didn't.

but - your question was at what point i consider myself nonverbal. and that part took longer, i think. when my speech went away from regression, i had the strong intense gut feeling that it was permanent and never coming back. and the feeling got stronger especially as it kept getting worse and worse despite me trying harder and harder every day.

but of course i didn't know anything for sure. and not knowing anything for sure was too much for brain to handle all at once, so a lot of it got shut off and put away to deal with later.

there was a LOT going on and a LOT of change from this big regression. and brain took a long time to process it. and even more time to understand and process feelings around it. i am still processing and tackling this, even now!

so for a long while, i simply thought of it as "i cannot speak", "i am unable to speak". because that was the easiest and simplest way to think of it. and it fit into what my brain already knew of my experiences, so it didn't feel like "lie" that brain would reject.

the word nonverbal was there in my mind during all this, but i felt upset and not good feelings any time i even wondered about it. (i think guilty, and very anxious, is what i felt around it?). i worried that i was not allowed. i worried that i would get in trouble.

like i said before, i can't give the exact timeline. but i know it took a while before it felt okay-ish and semi-comfortable to use the word nonverbal. only once my speech was 100% fully gone and my strong intense gut feeling that it is permanent was still there, still just as strong.

the only chance i have of gaining any speech back ever, is perhaps occasional one-word echolalia, out of my control. if i ever verbally say a word again, it cannot be intentional or in my control. i say that with strong certainty - not only based on gut feeling but also past experiences (of speech growing up, and how it felt losing it fully).

i hope this is satisfactory answer. and again i apologise for how long and rambly. it is important to me to always try be as clear as i am able. i have an intense compulsion to tell the complete truth all the time, and i get very upset when my poor language ability messes that up.

have a nice day :)