Sometimes I can’t talk. I’m an adult, I hold down a job, I’ve spoken in public at international conferences. Yet some days, I can’t even say “yes” to the offer of a cup of coffee, at home, from my partner.
It’s as if someone has put tape over my mouth. The fully formed sentences are there and ready to come out, but they just don’t happen. It feels like I’m willing something to happen by telekinesis, or trying to start a car that refuses to even turn over. I’m also aware that I’m frowning with the effort. This happens for such a small fraction of my life, that in between occurrences I completely forget about it. However, it happened this week, prompting me to write about it. And this time I tried to examine it in progress, what did it feel like, could I work out why it had happened, did anything make it go away?
Normally I just say things, I don’t need to put any thought into it, about how to move my mouth, or when, the words just form. But for a couple of hours the other day, it was like the connection between the decision to speak and the actual speaking was broken. My thoughts were fine, all my other body parts automatically did what they were supposed to do. I was fully able to communicate with my partner by online text chat as he sat on the other sofa. I said, “I don’t feel able to speak at the moment”, he text back, “ok”, and we continued to message each other. It felt as if the part of my brain that normally only inhibits my social small-talk had got stuck in overdrive (you know, that bit of my brain I silence with wine, and then suddenly I can think of a myriad of trivial things to say to a complete stranger in a pub).
It may or may not be related, but I have always found it easier to communicate with written words than spoken words. I infinitely prefer texts and emails to speaking face-to-face or on the phone (as I mentioned in my post Why the internet is my best friend). But this feels like more than just issues around non-verbal signals, interpretation and editing. The act of speaking somehow requires more effort than the act of typing or writing exactly the same words to exactly the same person. And there seem to be days when the marketing and communications department of my brain clock off before the writing and editing team have finished. Nothing helps, and as suddenly as it starts, so it goes away again.
I don’t know anyone else that this happens to, but to be fair, I’ve never really asked anyone. I also don’t know how much, if at all, it relates to the area of being non-verbal in autism – I have to confess an inexcusable ignorance of that topic, a gap I need to fill. I know there are amazing individuals like Carly Fleischmann who can only communicate through written words. However, I’m aware that there is sometimes an attitude of, “s/he would talk if s/he really wanted to, s/he just has no interest in speaking”. My experience this week was of really wanting to talk, but no longer knowing how, and that’s different. I definitely have some reading up to do, and as always I would *really* value your comments if this happens to you, or you can help me expand my understanding.
© Catastraspie, 2012.
Communication (Photo credit: P Shanks)
catastraspie 
I understand you. At times, I feel so full, the thought of conversing seems impossibly difficult. I even have trouble writing. Social media is just an extention of thinking outside myself, which is too difficult at times.
“Nothing helps, and as suddenly as it starts, so it goes away again.”
So true! In a conversation, I reach a tipping point. I go from listening and attending to mindless nodding and social gesturing. It feels so insincere and it pains me to pretend. Typed words, however, maintain their purity and sincerity.
Thank you for sharing.
Lori
Thank you for sharing too Lori. I relate to the mid-conversation thing – I once had to hang up on someone and text them instead because the words stopped.
I too find regularly that social media a struggle, despite my love of all things internet and computer, and my twisted logic that it should be less draining than face-to-face because it is text-based and controlled.
A nice person on Twitter said not to worry about going quiet on social media because it’s more forgiving 🙂
Thanks for sharing! It’s been a very long time since I had a non-verbal episode that I can remember, but when I was a small child I had a prolonged episode that somewhat resembled what you’re describing, though I can’t claim to remember it well. The sense of helplessness I remember, but there was also at times a sense of obliviousness to what was expected of me by others, so I don’t think it was entirely the same. Still, I think you’re going about this the right way, starting by putting down your own observations, and then pursuing comparison data from experiences that may be quite unlike your own. I imagine experiences of autistic symptoms within people’s lives and among different individuals on the spectrum can be far more diverse and difficult to explain categorically than the experts trying to describe autism would like to admit. I’ve come across theories of mutism that attribute it to anger and not wanting to respond, and I think this is just an attempt to explain away things that neuroscience isn’t even close to figuring out yet.
Thank you for your comment, it’s really interesting to hear from you and hopefully will be useful for others to see variety in these sorts of experiences. I’m always keen to find out what are the commonalities and differences in people’s lives.
This is interesting because several of my friends (who aren’t interested in getting any diagnosis) become non-verbal in times of stress and use sign language instead.
I don’t experience losing the ability to speak entirely but I do regularly get spells of ‘aphasia’ where I just can’t remember very obvious common words. Sometimes it gets to the point where I can’t think of half the words in a sentence and literally grope in the air for the words I need. I don’t stop talking though, I just say ‘ummm, ohh, that thing, the… you know? ahhh, it’s on the tip of my brain!’ etc 🙂
I wonder if that’s the same sort of thing manifesting in a different way. I find it very frustrating when it happens at work or when I’m trying to make a serious point.
I’ve tried teaching my other half some signs but he just takes the proverbial 🙂
Do you find that your aphasia is aggravated by stress? My word-finding and speaking issues seem to be worse if I am exhausted or drained, mentally or emotionally, rather than stressed per se.
If it helps any, losing words but still speaking will come across as relatively normal to your listener, however frustrating it feels at the time.
I don’t think so, I tend to be more sharp minded when I’m stressed. Like when I’m in a meeting or giving a talk and I need to maintain laser focus, I’ll usually become a lot more eloquent. Like you say, I think it’s much more related to tiredness or being distracted or overloaded.
I think I seem worse than most people who forget words because I’ll get stuck trying to think of the word and start trying to get it by ‘brute force’ means, rather than doing what I should clearly do, which is give up and try wording what I’m saying a different way.
I read recently that AS people are more likely to keep trying flawed approaches when typical people would tend give up and try something else much earlier. It immediately made me think of some conversations where I’ve refused to drop working out what the obvious would I’m forgetting is.
That seems to fit what I do and what I see my family and partner doing! If you want terms to google try ‘perseveration’, which is part of executive dysfunction, and is basically sticking with something that isn’t working for far too long.
Wasn’t Einstein supposed to have said “Insanity is doing the same thing over and over again and expecting different results”? 😀
Thanks for the follow up comment about ‘perseveration’, weirdly with that in mind I’ve been realising that continuing unviable approaches past the point where any sensible person would stop is one of my common flaws when working. I think it’s partly a feature of hyperfocus too. I think I need to set myself regular ‘check in’ points to re-assess if what I’m doing is still sensible…
Oh and regarding word finding when tired – my boss tried to have a phone meeting with me first thing this morning and while I could think and problem solve perfectly well, I was failing to come up with simple words in almost every other sentence. It was very conspicuously apparent and somewhat embarrassing!
I have a ‘pomodoro’ app on my phone which I use if I need to remind myself to take breaks or ‘check in’, which can be useful. Also, if I’m having difficulty finding a spoken word, I try to write it and it comes out of the pen fine and then I can read it, which if you’re on the phone, wouldn’t be obvious at all?
At some point right before we learned of my asperger’s (not long ago and I am 43), my partner and I realized that there were stressful things that just would shut me down verbally, but if we sat in separate rooms and emailed, I could get through it. Sometimes we also will text from different parts of the house. These technologies are so amazing in relation to our different brains!
And the internet…I love the author Sarah Vowell’s take: “The internet is my Israel.” Yep.
Hi Christine, thank you for your comment! I completely relate to your experience and am so glad that these technologies exist, although I have also been known to hand write notes when I can’t form the words – it just takes longer and involves social contact to exchange notes, which may also be too much at times! 😀
Great explanation. This is very like what I am like when non verbal, except that about 25-40% of my time is non verbal, and when I do speak, I need to think of every word or sentence before I say it out loud. There was never a point in my life where speech became a spontaneous gift.
Thank you 🙂
As a general rule I always have to think of what I am going to say before I say it, but I think it’s because I need to double check it to make sure it’s accurate, succinct and not going to offend anyone (that I can spot). Occasionally I have said things without doing this process I then have to go over what I’ve said and do the check retrospectively and get annoyed that I said something odd – almost the complete opposite situation, a bit of autopilot speech.
I am thankful that my word-finding difficulties and non-verbal periods are relatively infrequent as I find them frustrating. What sort of relationship do you have with your non-verbal time, does it cause *you* angst, or is it part of your being?
This was a very interesting post, thanking for being so open and candid. Have you ever tried to sing a familair song during these episodes? In some studies, patients who weren’t able to speak were able to sing entire songs. Here’s one example of this phonemonen….
http://www.jstor.org/discover/10.1525/mp.2008.25.4.315?uid=3739576&uid=2&uid=4&uid=3739256&sid=21101237669077
Schlaug, Gottfried; Sarah Marchina, Andrea Norton (2008). “From Singing to Speaking: Why singing may lead to recovery of expressive language function in patients with Broca’s Aphasia”. Music Perception
Thank you for your comment 🙂
I have never tried singing actually, and I am definitely going to! I know that separate parts of the brain deal with speech and singing, and that’s a really fascinating idea. If I remember to do it (yukky memory) I will post something about it!
I had the flash of recognition when I read this. It happens to me to a greater degree, it is a bit random, but more so when I’m tasking on something and am interrupted, or in “drive by” social situations. Like you , I can always communicate better in text. There are times my wife and I sitting on the couch will talk between her laptop and my tablet. This also seems more repeatable on the phone. In my case, I’ve found when I try to force it, I’ll come out with something entirely unintelligible, as though the mechanism of speech was running out of phase with the formed thoughts. I had always thought it to be a part of my autism, but just where in the context of the other sensory issues that are more clearly defined, I’ve not been able to identify. Nice post, and great blog, BTW
Hi Dave, thanks for the lovely comment 🙂 It’s really interesting to hear about your experiences, and particularly your sense that your speech is running out of phase with your thoughts. I think a lot of people take it for granted that their thoughts come out of their mouth immediately, and exactly as intended, unless they have had something like this happen.
You just described me. Meet another of your “twins” (one who excels in [and therefore prefers] written communication, can be very verbal…and, yes down to the wine. 🙂
As regards stress and aphasia: a certain amount of stress does bring clarity to my mind. Adrenaline helps me to a degree. I do well when under a deadline, but not well at all if being “watched” (stared at) whilst trying to complete a task. I don’t do well when rushed, yet get in “the zone” during an emergency. (Unfortunately, years of literally being in survival mode has started to seriously negatively impact my health, but that’s an aside.)
I think I *have* found I have more aphasia moments/days after prolonged “new” stress (such asnwhen a dear friend died and I was distraught or I’ve not slept in three days because of pain). Perhaps you have a similar “need” for (or body habit/pattern of using) adrenaline and your brain has tired moments or days when it just cannot keep up. Just a thought.
Hey there wine twin! 😉 Thanks for the thoughts. You may be onto something with the stress and tiredness for me, as I do tend to run on adrenaline/high anxiety a lot of the time. Of course I will have to ‘scientifically’ investigate this and see if there’s a pattern 🙂 Adrenaline causes glucose to be released into the bloodstream, which is the only fuel source the brain can use, so I can see a situation where after a lot of adrenaline/glucose release the brain might be receiving less energy than it needs. Perhaps the speech centres use a lot of glucose compared to other parts, or perhaps speech is particularly vulnerable to low energy. Makes me think I might try eating something sweet next time and see what happens…
I didn’t ‘discover’ autism until two years ago, and was only officially diagnosed as autistic a month ago – one of the major things that made me realise I was autistic was the description someone gave of trying to talk, and it feeling like your throat goes numb.
I was totally non-verbal up until around 7 years old, my mother talked for me and the fact that she kept saying the wrong thing is what eventually saw me speaking for myself. As an adult I often find it hard to talk when I’m with a partner – I can talk to my partner, but say in a restaurant I need him to talk to waitresses for me…which requires my partner to have psychic powers to know what I want. It’s frustrating as hell when people should know better, like partners in the past who’d get mad at me for my not being able to talk to them when I’m upset, or autism support workers not realising that if I’m not answering it’s either because they’ve not asked the right questions the right way, or I’ve become non-verbal and they need to provide another means of communication for me or give me some time.
Right now I’m trying to get disability benefits and have to go to free legal aid to get them to phone on my behalf – neither the benefits people or the legal aid people understand that my not being able to talk isn’t a choice, I’m not just refusing to talk or being awkward and it’s not something I can ‘get over’ – it’s as valid a disability as any other, if you are non-verbal or tell people in advance it should be accepted as a fact and not something they can call into question or use against you.
Thank you for your contribution Jay, it really struck a chord with me, particularly the bits about people not asking the right questions, needing time, and definitely ordering in restaurants (it helps that we usually go to the same places and I have exactly the same thing!). I get called ‘quiet’ a lot (although interestingly not ‘shy’, which apparently is something different) and this is despite the fact that it’s never quiet *inside* my head! I also sometimes get perceived as immature and not taking responsibility for myself if I speak through someone else.
I’m sorry that you are not being understood (and respected) by the benefits and legal aid people, they really should know better. Would they respond that way if the person in front of them was hard of hearing and needed someone to phone on their behalf? Communication difficulties make it so much harder to self-advocate in already difficult situations. I wish you the best of luck with it.
I am autistic and I’ve experienced this too. Have you read about selective mutism? I do NOT have this as a diagnostic condition, but I found it interesting to read about as I can see similarities. You describe the experience very well. Thank for your post.
Hi Lisa, thanks for your comment 🙂 I haven’t read much about selective mutism yet, but it is definitely on my reading list. My understanding is that it is a separate thing but, as you say, it has lots of similarities.
This happens to me all the time- being able to speak at some times and not at others. I made a video and have been writing a blog post about it, this week, but had to put it off in order to finish some work. Hopefully will upload the video and transcript next week and I will post it here if that’s OK with you.
Hi Paula, that sounds really interesting! Yes please do post a link to your blog post and video when they are ready so that we can see them 🙂
I was diagnosed several years ago and this also happens to me. I had never thought about texting or writing what I wanted to say but my autism consultant encouraged it. I still have trouble even writing though because I have to really think through what I want to say and still can’t get it to come out the way I want but she is able to figure out what I want to say. It is one of the few ways I can “talk” at parent support group. I also wrote about communcation in my last blog!
It’s such an important issue and so difficult to explain. I’m glad you had a consultant who was able to suggest something that you found useful, and which allows you to contribute to your group 🙂
Nice blog. I am on the spectrum and very verbal and much better in writing. Prefer any written form to face-to-face except with others like myself. I also veered into the alternative realm for my health issues and learned (vaguely) from an excellent doctor of Traditional Chinese Medicine, that the spleen is involved in communication issues between the brain and the mouth. My speech is much better thanks to Acupuncture and other spleen-related treatments. I wonder if it would also be the spleen having issues when speech suddenly stops. I am now an alternative health practitioner and I can usually quickly tell by a person’s speech that they have a spleen that easily goes out of balance (as we like to say in the field.) Would be interesting to find out if spleen-related acupuncture or other healing methods would make a difference.
Thanks for your comment 🙂 That sounds really interesting. I have a similar relationship with my chiropractor, although not for speech.
May I link your blog post here to my blog entry about not being able to speak at times?
Yes of course you may, I look forward to reading it! 🙂
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