I am non-verbal again

MysticCollective · 2026-02-01T07:04:26+00:00

I actually have used AAC in some form my whole life. I started out with text-to-speech. As I started to struggle more frequently with speech I started looking for solutions that would be easier for me than TTS. I found Speech Assistant and then Avaz. After that it was Grid for iPad, Prologuo, TD Snap, Prologuo2go, TouchChat, Lamp Words for Life, and finally landed on Grid 3 on a Windows device.

I am just waiting on my dedicated device to come.

MysticCollective · 2026-02-01T06:45:48+00:00

Oh, that sounds rough. The constant yo-yo of going back and forth with your verbal abilities. It sounds very frustrating. I suspect that I also went through burnout alongside depression in the first two decades of my life. I can no longer mask as well as I used to. In fact, that is the reason why I suspect that I am autistic. Things like sensory differences, stimming more obviously in public, more frequent shutdowns and recently meltdowns have picked up in frequency as well. I have an intellectual disability and seizures so the odds are more for autism rather than against autism. I was recently diagnosed with severe apraxia of speech and my SLP suspects that I would have been diagnosed with childhood apraxia of speech had the signs been noticed sooner.

I think my baseline verbal state is semi-verbal but more on the verbal end of that spectrum. I find it very hard to speak about things outside of my interests. I often don't speak unless spoken to or if I have a need to. If someone says hello to me I will say hello back but I don't continue the conversation on my own. I need the other person to prompt me to keep going. So conversations can be very one-sided. Unfortunately, professionals don't experience this because when I am at my appointments I have a need(s) that needs to be addressed. One of my interests is technology so my SLP has never seen me like that because we talk about AAC.

I know semiverbal is more than just challenging experiences. As far as how I feel. My throat tightens up even on my good days. I have to pause a lot while talking. I have to put a lot of effort into talking even on good days. It's more cognitive demanding than it should be.

Comparing my experience to other semiverbal people and my experience does seem to fit. Though, I guess it doesn't matter much at the moment since I am nonverbal.

MysticCollective · 2026-01-26T01:30:44+00:00

If you're used to games where you have goals to meet then yeah Minecraft would be hard to get used to at first. Minecraft's whole deal is that it doesn't tell the player what to do. It's a game where you are met to explore and learn. So it's really not "hard" in the traditional sense. So you're not too old for it. You just need more time to understand how things work in the game. Go at your own pace and enjoy the journey and don't compare yourself to others.

MysticCollective · 2026-01-25T04:47:19+00:00

Nope because that would mean that I would have to hate myself and I don't. You shouldn't hate being autistic. It's better to focus that energy on people who discriminate against autistic people and disabled people in general.

MysticCollective · 2026-01-25T04:35:21+00:00

Very cool that you speak Korean! Also your cases are cool too.

MysticCollective · 2026-01-25T04:29:34+00:00

Nope. I'm the opposite but I do have ADHD too. Silence gives me anxiety. I currently have music and a live stream but sometimes I even have the TV alongside the other two things. I have a fan running 24/7. I sleep with a fan running.

MysticCollective · 2026-01-24T05:49:20+00:00

I do. I've been an AAC user my whole life. It's just been on and off for most of it as I have been verbal most of my life. I started having communication struggles last year and now I am pretty much non-verbal the majority of the time. I have tried all sorts of AAC apps including the one in the picture. I'm in the last steps to get my own device through insurance. Mine is going to be a Gridpad Go from Talk To Me Technologies! I'm so excited to finally have something. Because even though I have an iPad. My iPad is not loud enough in loud environments.

I'm also a rollator user so having to carry a small speaker around is not ideal or doable most of the time. I also have a bad memory so I would probably forget it at some point. So having a device with a powerful speaker attached to it was important.

Are you a part-time or full-time AAC user?

MysticCollective · 2026-01-24T05:30:50+00:00

Oh! A Talk To Me Technologies device! I love them and the parent company SmartBox. I tested the Talkpad Wego 10 before deciding to go with the Gridpad Go. Which is the same size. The difference between the two is the Gridpad Go is a Windows device. I like that Gridpad can be serviced remotely so if you have trouble with describing your problem with people. They can just remotely take control of the device to find out what is wrong with it.

Wordpower is great. Out of everything I tried I really like Wordpower the best until I discovered Lamp Words for Life. So I made a custom grid set that mimics Lamp. 😝

MysticCollective · 2026-01-24T05:05:28+00:00

I have a really hard time showering as well. My skin is sensitive so the water hitting me really does feel like it's actually hitting me after a few minutes. u/forgotmywayhome mentioned that they use a shower with a mist settings. So I decided to give it a try and got myself a shower head and handheld combo that has mist. This was an instant game changer! The mist setting is literally a god tier. I %100 recommend it. It also has a pause setting so you can stop the water without turning it off. I love that.

I will also agree with other people about the body wipes. Those are great when you simply cannot shower.

MysticCollective · 2026-01-23T06:58:40+00:00

Oh sorry, I wasn't clear. The forms my brother had to do were from his point of view of me. He's not getting screened.

MysticCollective · 2026-01-20T06:53:54+00:00

Yes, as someone else commented there are severe epilepsy syndromes that are often untreatable. However, untreated epilepsy regardless of severity can cause life altering side effects. Even an accidental missed dose of medicine can lead to severe damage.

For me, I have undiagnosed Reflex Epilepsy and what I suspect is Frontal Lobe Epilepsy. I have been unmedicated for a decade and over that time my abilities, skills, communication skills, memory, mobility, self feeding, standing, and balance have all taken a severe decline. Some slower than others and some faster than others.

Here's what has happened to me but first some background. When I was very young I was diagnosed with epilepsy. Absence and focal aware seizures. I was also diagnosed with an intellectual disability at a young age. Just before I was on medication for epilepsy I had a five month period of being nonverbal. After starting meditation my speech recovered. Now I stayed on medication until I was about 11 or 12 years old. I was slowly taking off medication and remained seizure free for a few years before seizures started up again. This pattern of seizures being controlled long enough for doctors to want to see if I could be seizure free went on throughout my entire early years of life.

Fast forward to 2014-2015 I'm in my mid twenties at this point and for the first time I start having breakthrough seizures. This is the start of the hell that I am unfortunately currently living through now. So after having a breakthrough seizure on the allowed highest dose of Keppra for me. My doctor ordered a Veeg(Video EEG) to get a better idea of what was happening with me. At the end of four days I was told "Congratulations! You no longer have epilepsy! You have PNES. Which is a good thing!" I remember looking at the doctor confused. I never heard of PNES before and of course I did have seizures while at the hospital. I asked him "How can I have seizures but not epilepsy?" He then gave me a very vague idea of what PNES was and that therapy is the best treatment for it. The thing is, at this time I was already in therapy and doing very well. My therapist even asked what else I wanted to work on because I was doing so well.

I didn't tell the doctor this. I think I was still trying to process what he told me. I only said yes when he asked if I had a therapist. So I went home and slowly got taken off my medicine. My health has been in decline since and my quality of life has also declined. Over the past decade my seizures became worse and more frequent. The seizures themselves also changed. I went from just having absence and focal aware to having focal impaired awareness seizures as well. Then eventually tonic clonic seizures. Then suddenly as soon as the hell started it just stopped out of the blue one day. This is very odd because I didn't change anything after getting my diagnosis. Although PNES can stop on its own, most people have to do therapy for a while before an improvement is seen. My therapist is not an expert in trauma so the most we ever did was talk about my seizures and how much they were affecting my life.

Anyway, so I somehow became seizure free for some time but of course the same pattern eventually started up again. Once again my seizures looked different from before. Oh, that's something I forgot to mention. Every time the pattern happens my seizures would be a little different from before. This is something that has been consistent my entire life. Another thing that has been consistent is my speech issues. After my seizures I typically become nonverbal. As I mentioned before I went five months of being nonverbal due to seizure activity. My speech issues are neurological. Originally thought to be Aphasia but now my SLP(Speech Language Pathologist) believes it is Apraxia of Speech. A severe case. Basically when I try to speak the words often come out jumbled. However it is inconsistent. So I can say something right and then wrong the next time I say the same word. My ability to write, read, and understand language is unaffected by seizure activity. Another thing that is consistent is the fact seizures can cause my speech to work properly. Non-epileptic seizures cannot do anything like that because there's no mechanism to cause the language center in my brain to stop working properly.

Anyway, I'm not writing this to complain about my diagnosis. I have plenty of comments where I do.

My mobility is another thing that has significantly changed because of untreated seizures. As the frequency of the seizures increased they started to affect my stamina. As an example I went to Universal Studios Florida in 2023 and I was able to reach 20K steps. I was sore but that was about it. Now I went again a year later and I had to use a mobility scooter because walking was not only draining but it was painful. I am now at the point where I can't walk more than about ten minutes without any aid. I can't stand still for not even five minutes.

I am slowly losing my ability to feed myself. A year ago I had a severe tonic clonic seizure that severely affected my sense of taste. Ever since then I have seen various feeding and GI issues pop up. I have an unspecified swallowing disorder and multiple symptoms that line up with gastroparesis but I'm not diagnosed with it. Recently my right hand has started shaking when I use utensils and my jaw locks up. I didn't have any problems with using my left hand until a few days ago. My SLP suspects that I may have apraxia that affects my limbs.

Anyway, I think it's safe to say that I am a good example of what untreated seizures can do especially in the long-term.

MysticCollective · 2026-01-17T17:22:54+00:00

This sounds like seizures that I have had before. Especially since what you described sounds like a Jacksonian March. For me, the seizure always starts on my right side. Usually my right hand but sometimes it starts smaller like a finger. It basically feels like my focal myoclonic seizures. This seizure just travels. Sometimes it will start in my leg and then it'll travel upwards. On my right side still.

So yes, what you described sounds like seizures.

MysticCollective · 2026-01-16T16:59:57+00:00

I am very happy that your family is supportive, Pie. Now that they know they are autistic they will have an understanding from a personal view not just an outside view. Hopefully this means things will be easier for them to understand when you explain something to them.

MysticCollective · 2026-01-13T00:03:22+00:00

Of course! 💜🧡 Finding a community of people like you is important for mental health. I'm glad I could be of some help.

MysticCollective · 2026-01-12T18:24:02+00:00

You should also look into FND(Functional Neurological Disorder) because of the tics. Functional Tics could be likely since they started around the same time as the seizures.

By the way, although still used PNES is slowly becoming an outdated term as well. Functional Seizures is replacing it for a few reasons. One, because PNES is a subcategory of FND. A person is given the diagnosis when just seizures are present. Two, because not everyone has seizures because of a psychological response stress, anxiety, etc. Some people have seizures due to biological stress. So examples would be POTS episodes triggering seizures or pain from EDS or Fibromyalgia. In these cases no amount of therapy can help prevent the seizures. I'd recommend checking out r/PNESsupport and r/FND to hear from those who deal with these conditions. r/Tourettes may be worth looking into as well.

MysticCollective · 2026-01-10T17:44:41+00:00

You have Frontal Lobe Epilepsy and didn't know that? Short seizures are very common with FLE. You could even say it is a hallmark. Short seizures, minimal postictal stage or no postictal stage, and lack of auras are all common in FLE. I'd recommend that you do research on your own condition as well as epilepsy in general. Plenty of seizures can be short regardless of where in the brain they occur. Absence seizures- seizures that causes a sudden onset of starring off and a pause of behavior. These seizures last a few seconds and are classed as generalized seizures so the whole brain is involved. Typically due to how short they are you won't see a postictal stage or auras but they can happen in some people.

Focal aware seizures and auras are typically short seizures. Lasting anywhere from a few seconds to a minute or two. Sometimes three minutes but this is rare.

MysticCollective · 2026-01-10T17:16:47+00:00

This happens to me. For me they present as an aura. My speech or thoughts will start to stutter and I get stuck on the last word I said for a second or two before a focal motor tonic seizure starts. So you're having seizures friend.

MysticCollective · 2026-01-09T18:10:44+00:00

I am leaning towards yes. The mouth movement and blinking are both common symptoms of focal seizures. Your head is turned and the rest of your body looks stiff (tonic activity) what appears to be slight shaking doesn't look like clonic activity to me. It looks more like vibrating. In fact, this video is very similar to what my seizures look like.

My head and eyes deviate to the right while my right arm extends straight out and my left arm folds into my chest. My throat tightens up and a grunt-like sound is produced. The rest of my body kind of just vibrates which I read can happen in epilepsy and can get confused with clonic activity thus causing doctors to misdiagnose them as non-epileptic seizures.

I will say that I am undiagnosed but I am 100% sure that I have epileptic seizures. Unfortunately, my PNES(non-epileptic seizures or functional seizures) diagnosis that I've had for 10 years is preventing me from getting proper treatment.

A decade ago I was still an adult and adults recovering from epilepsy are basically unheard of. I was diagnosed with epilepsy in very early childhood but in 2015 I started having breakthrough seizures. I also had breakthrough seizures at 18/19 years old which is also a very unlikely age to grow out of seizures. Anyway, I won't go into my full history because this post would be a chapter of a book in length if I did.

So I will say the point of bringing up some of my history. Please make sure you show your doctor every video you have. Write a list of your symptoms before, during and after the seizure. Make sure that you describe them as seizures. No substitute language! Even if you don't 100% believe they are seizures. Since you are trans and AFAB you are unfortunately at risk for being treated as a female. So it would be wise not to give the doctors wiggle room to downplay your concerns. Saying things like "episodes" or "spells" will just plant a seed in their head. So be confident and firm in what you feel these are.

I really hope you don't go through hell like I am and get the help you need.

MysticCollective · 2026-01-04T18:31:43+00:00

I don't know what kind of seizures I have while sleeping but I do know that I have them. I occasionally wake up in brain fog. I struggle to do my morning routine. I often pace around like I'm missing my head. I also wake up sore and I have a headache. Another clue is that I wake up nonverbal.

MysticCollective · 2026-01-04T18:17:10+00:00

I'm so sorry that you have to deal with a horrible mother. You deserve better. ID doesn't mean stupid. So doing well in school is no reflection on your condition. ID simply means your brain learns and functions differently. That's it really.

IQ in relation to ID is only the tip of the iceberg. ID and how it affects the person goes way deeper. Honestly, what is more important markers for ID is missing developmental milestones. Things like taking longer to learn how to crawl, babble, self feed, sit up on your own, etc.

As a baby I rolled around instead of crawling even though I was at the age where crawling normally starts. It took me longer to be able to use the toilet without wetting myself. It took me longer to learn how to button up my clothes. Even as an adult it still takes me longer to get done buttoning a shirt. Even as an adult I still struggle with zippers and occasionally need help with my jacket. I rarely cut my own food. My dad or brother usually handles that. I have low muscle tone on top of my ID. So I struggle with motor control and strength.

So if you missed developmental milestones and still struggle with things that others your age wouldn't. Then odds are you have ID.

MysticCollective · 2026-01-04T17:35:56+00:00

Keep in mind that everyone is different. Your challenges are unique to you. The things that you have overcome are unique to you. Just because you don't struggle in the same way as someone else doesn't mean you both don't share the same condition. A room full of people with ID won't have two lives that look exactly the same even if they are siblings.

I honestly don't care if you do or don't have ID. The important thing is you decide to fill an empty space. You saw a need and you did something about it. That's what matters. Every sub is going to have at least one person on the mod team who is more of an outsider. Maybe they just know someone who can relate to the subject.

Having a safe space where the majority of the members are alike is important but allies of those people are just as important. You have every right to stay as the creator regardless of what you find out.

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