I am exhausted, I don't want to speak.

Post Reply New Topic

Speaking is so hard for me. The huge amount of processing required, the word mix ups, the repetitions and confusion on both sides.

But nobody around me will accept my wishes to communicate with AAC. And I feel embarrassed to use it, especially in public (the stares and muttering people direct at me).

What can I do?? I am getting physically ill due to speaking = extreme effort.

Just stop speaking. They can't force you to talk. Just keep your mouth shut. If they want to understand you they will have to accept other alternatives. You getting physically ill is not worth it. You need to do what is best for you and if mutism is what you need just start doing that. Just don't open your mouth to speak. There is nothing they can do about it. You can tell them, or even write it down on a card you carry. Speaking is too much effort for me it is is making me ill I will be non verbal until I notify you otherwise. End of story.

I miss you, SkiBum--everything cool?

Excellent. That's exactly what I'll do. Thanks. That was helpful.

Good for you Steel Maiden. I am so glad I could help. It is so important that you do what is best for you in this situation. Hopefully it will help you feel much better. Keep us posted on how you do with it. Never let anyone force you to talk if you are not feeling able to.

Thanks. I'll be more assertive and self aware from now on. I've got an app on my phone for text to speech. I get unlimited texts and unlimited internet on my phone so I can use those to communicate.

Problem is that my GP won't accept emails and faxes take 48 hours to be processed there. Also last time I used AAC on a ward I got my phone taken off me. And when I used it in A&E I got ridiculed by the staff.

Good thing I have text service for 999 so I don't need to speak to call an ambulance etc.

Aww, thanks Kraftie. It's so nice to have friends here. It's been a rough patch lately and we have been a little tight financially and of course I am still processing all the other stuff you know about so it's been rough but I am doing well regardless of all that. I started Special Olympics kayak practice and my husband is one of the volunteers so that has been really fun. The people are so nice and genuine and wonderful. I love it and being out on the lake is awesome. We had our pool boat flipping over practice last week Wednesday and then our first lake practice Saturday where they assessed how well people could paddle to divide them into groups of ability levels. Of course I am an experienced lake paddler and higher functioning so I will be in the advanced group. This Wednesday we will be starting to do actual training. They will be making the lanes for us to train for competition. So it is very fun.

I don't want to hijack the thread though so we can talk about it more on a different thread.
It's good to see you too Kraftie and I hope you and your wife are well also.

I am glad that you are taking a stand to be more assertive. Sometimes the only one who has your best interest in mind is you and you can't be shy about doing certain things you need.

You might need to make small exceptions like for your GP if you need to talk to him right away about something. If you can wait the 48 hours do the faxes but if you need to talk to him right away you can just talk for that moment and then be mute with everyone else. That will limit and really cut back the amount of talking you have to do so hopefully it won't stress you too much if you only talk a very little bit.

If people take your phone from you then they will just have to deal with the fact that you won't talk to them otherwise. I would just make a card that says, "Sorry, I am non verbal at the moment, either give me my phone to communicate or don't expect me to talk to you." And for those who ridicule you, you can make a card that says "Up yours!" Just kidding on that one, it might not be a bad idea though. But they are just rude and obnoxious and you might just have to try to ignore them and just go about your business. Sooner or later they will stop if you don't respond to them. They obviously don't have a clue how exhausting and debilitating it can be for us. I have times when I choose not to speak as well because I can't deal with the migraine I will get if I force myself to speak. If I am too exhausted from sensory overload or from a social situation I just refuse to speak and to engage with others. It's the only way I can have a hope of recovering.

But I am proud of you for taking this step. It is very important for you to protect yourself this way.

Having the ability to call the ambulance is great. Make sure you have a little card to show them that you are nonverbal at the moment and briefly explaining why. That way if you ever do need ambulance service they can meet your needs with that and also let emergency room doctors know. I have a medical bracelet, it's a Road Id that I wear when I do sports. It is interactive and it has a pin number where a first responder or medical personnel can see anything I write about my medical information and it has emergency contacts like my husband and parents and brother. I have also written on there that I am Aspie and can become non verbal under extreme stress. That way they know what is up with me and they can even put me in a low sensory room if needed. I love it and I always feel better when I wear it. If I need to I can just show them my wrist and they know to look for the pin number on the back of the metal plate. It's great. And if I am ever unconscious all the info they need about me is available. Here is the link to the bracelets.

you can write anything you want in the interactive one so you can put as much or as little info in there as you like.
http://www.roadid.com/Common/default.aspx

Thank you

I get migraines too, every time I have a conversation I get ill afterwards too. I did an experiment recently. I went out for a solitary walk with music and zero speaking, for a couple of hours. I got home and felt fine. Then, another day, I went out for a similar amount of time, but I had to do a half an hour conversation with my care coordinator. I came back home and suffered a severe migraine attack. I get basilar migraines so I get alarming symptoms like falling down spontaneously, severe vertigo, severe visual disturbances, breathing pattern alteration and disorientation (I have actually walked into walls, not knowing what a wall is, or been unable to work out what shoes do, during a migraine), as well as a crushing headache.

I will make the card, my new autism support worker is coming to see me on Thursday so I will discuss the card and making people aware with her. Good ideas.

I will limit speaking to only absolutely essential situations, and even then, I will be laconic.

You are so welcome. That sounds like a great plan. Your migraines are much more severe than mine. I get nauseous with mine and it may take me 4 days to get rid of it and I have to spend a lot of it in bed in the dark in a quiet room or with music that helps me. But with the severity of yours it is imperative that you can choose not to speak. Let us know how it goes with the new carer.

Thanks - much appreciated for your help. I'm going to study now away from the internet for a bit but I will come back on WP when I have more news.

Sounds good. Talk to you soon. Study well.

I can relate to this. For me, my verbal ability in general shuts off when I'm in overload. So not just with speaking but also writing becomes difficult. I like to carry a notepad and draw whenever there's something I can't express properly in words.

However, I'd rather make noises or imitate people's actions because generating language is so difficult, despite the fact that I intensely crave human interaction and company.

Limiting talking to necessary situations, swapping to AAC, learning AAC apps to make it faster to communicate via AAC, are all good things. Its NOT worth it to speak always, if it hurts you this much. It's really not.

I really suggest you communicate (because I won't say talk here), with asdoggeek, who's been going through this same process. She also can speak if necessary, but the cost is too high, and so has been swapping to primarily AAC communication. She's posted about it here multiple times.

Can you use TTY? (teletype service -- I think you'd need to get special equipment, but it's a telephone-based way of communicating via text.)

Hi I have gone through this transition from verbal to prodominantly nonverbal, please feel free to message me if you want I'm headed to bed now but will give more details tomorrow