Are you verbal? High functioning? The lovely labels….

Reading made me think about my own experiences with speech. I’m not entirely sure if I am unsual that way or if it’s the song of most adults who were not diagnosed early.

Let’s start with the basics: How Language is produced or not produced

Spoken Language has two prominent regions in the brain responsible for it: Wernicke and Broca. Wernicke creates a sentence in your head, it takes care of grammar, vocabulary and all the million other things necessary to make a proper statement. Brocas meanwhile is responsible of sending the right neurological signal to your language producing organs such as the larynx to actually turn your thought up sentence (courtesy of Wernickes) into a spoken sentence. In autistic non verbal people Brocas Region is not functioning properly. Meaning you might think of the best piece of literature or the most touching poem but it won’t ever leave your mouth. You essentially wear a very very effective muzzle, preventing you from opening your mouth. I strongly assume people who are lost for words are in a very similar state of being overwhelmed. The onslaught of emotions and possible things you could say creates so many ideas and options that the entire system goes into a meltdown. (Please note this is not the same as hearing voices. This is about weighing options in your mind and having good arguments for more than one position.The back and forth arguing in your mind is plainly that: in your mind, it is at no point mistaken as an outsiders voice or opinion.) In your brain 20 well reasoned voices argue out what to say next and the message we take to spoken language is the same you would take home from a conference room with 20 people passionately arguing differing views: nothing. It gets drowned out in the chaos. Only in autistic people this seems to appear much more frequent to the point of some autistic people never actually able to use spoken language.

So with this I already come to my first point of this post: the labels verbal/nonverbal both apply to me depending on where I am standing with Broca and Wernicke. And as I detail in the section personal experiences I might classify as both high and low functioning as well. However I am not low functioning because I am broken. In the words of the autistic academic who inspired this post my brain is working nice enough considering how it was shaped to be. But I was broken. As i detailed in my post about Trauma autistic people might very well be extremely susceptible to trauma. And in a traumatising situations different parameters are important. Different skill sets are advantageous and different sets of observations are important. My brain is stellar at surviving traumatising situations and disappearing from view. This has ensured my continued survival. There is nothing wrong with me. There is something wrong with the people who broke a child in their care and there is something wrong with the people who expect traumatised people to just turn around and smile while jumping over a nice flowery meadow with their unicorn friend and a rainbow in the background. And the would be something wrong with me if I didn’t fight accepting this view.

Practical implications

So how do we deal with this? There are three stages of affectedness: the least affected transitional stage where “only” Brocas went to a strike. Thus Wernicke still faithfully produces nice well reasoned language but your can’t get it out of your head via the usual oral route. The medium stage of affectedness is the pervasive stage when Wernicke temporarily caves in to the sheer number of things going on in your head as well. You can not think clearly anymore and would not know what to say even if Broca came online. The most affected stage is the permanent stage when spoken language eludes you -you guessed it- permanently. My guess as to which region of the brain cooperate and which don’t is as good as yours but I’m guessing in affected individuals both problems (only Broca or Broca and Wernicke) might occur alternately.

For the transitional stage of having a sentence ready but not being able to say it. Since people in transitional stages rarely are fully non verbal its also unlikely they happen to be surrounded by people fluent in sign language. Hence the miracle of iPads, Notepads, Tablets, Smartphones or good old fashioned pen and papers. All enable you to write down what you want to communicate. This circumvents the lack of muscular cooperation from your larynx: your simply rely on your writing hands working neurological pathway. It also comes with the added bonus of staring at a rather predictable screen/paper, which normally drastically reduces sensory overload and helps calming some of the excess voices arguing their views in your head.

In the pervasive stage all hope for your nice writing aids helping you is clearly for naught. Aside from wearing a muzzle words also escape you. So no amount of enabling you to say words you don’t have will do any good. In this case the key to changing your predicament lies in calming down the cacophony in your head. You might need to remove yourself from a busy room to a less sensory demanding environment or take a break from a taxing conversation (you clearly have no way of asking it but you might be able to explain later). Maybe some calming music helps or whatever other things you can do to calm yourself down. Do NOT focus on what is broken with you. Remember you have been there before, you have overcome this situation already and you will overcome it again. It is not permanent. And the good people in your life will be understanding of this issue and not judge you badly for it.

The permanent stage obviously brings a set of new challenges. Aside from the tips I have offered above I have only some guesses on what might further help: consider generally reducing sensory input, bright light, background sounds such as radio and tv, general noisy atmosphere and excess number of people. (If we are talking about a nonverbal autistic person any number exceeding one other person to communicate with might already be excessive, so the more reduction possible the better.) Also an emotional overload is possible. Remember that while autistic people may not speak their hearing and reasoning might very well be fully operating. Meaning abeling language and talk about defects, disease and low functionality all reach the autistic persons consciousness and negatively affect their selfimage. Only confident people have a voice. The more condescension, intolerance and discrimination a person is subjected to the stronger the effects become. And if there is any hope your child/spouse/student/whatever will start to speak and you do not even spend a single monetary unit on it but only need to change the attitude of people interacting with that person what exactly should keep you from trying? This is something everyone can start. The web is by now full of autistic people like me giving account of what we consider hurtful and discriminatory. Various possible needs of our both emotionally and sensory are to be found if sought and one can work on this one by one to improve the quality of life of an autistic person. And normally a good compromise can be found to also meet the needs of the people interacting with autistic people. If you are a people person consider removing the autistic person from the stressful situation by letting them merrily puzzle in their room or maybe meet somewhere else (cafe, someone elses flat) more regularly. If background music is important to you consider wearing headphones or try to find music that isnt overtaxing to the autistic person (for me its music with voices that drains me the fastest, if no one is signing we can talk about it) and so forth.

Personal experience

Now the fun part: I’m going to screw over everything I said so far. You see I had this extremely supportive set of parents, grandparents and other relatives who are all staunch emotional abusers. The only reason why I have difficulties is of course ONLY because I’m not trying hard enough. I’m just trying to annoy them and I haven’t accepted Jesus in my life blablabla. Basically any explanation putting the blame on me and preventing them from needing to take any action at all. So growing up in an extremely hostile environment the struggle to “not let your autism show” becomes a struggle for life. And if the stakes are that high strange things happen. The strange thing I made happen is that I somehow got Broca to work consistently regardless of whether or not it could.
So I hear all these little demons inside my head firmly siding with my family. I tried hard enough and I made it work, they were right. What a wonderful world that would be. The sad truth is I completely lost control over what I said altogether. I depersonalised during large parts of my everyday life in order to appear as if I’m normal enough to be clothed and fed by my family. I knew better than to look for any emotional needs being fulfilled. The person talking wasn’t me and I beat myself into submission so badly I wasn’t even standing by and watching anymore. I hid into the deepest folds of my mind that I could find. To this day after years of organised search and rescue I fail to have a proper sense of self. My normal bed time is somewhere between 3am and 10am and has been for 16 continous years. Meaning I have the choice to get enough sleep while being unable to hold a normal job, missing office hours of everything including grocery stores and building a social network because somehow no one wants to meet for tea at 4 am. Or I get up during the day when I’m supposed to get up resulting in nausea to the point of having to regularly vomit gall and being unable to develop any form of appetite while still being rather malnourished. I am severely depressed and display all the symptoms of longterm psychological trauma. I have been in therapy with suicidal thoughts as early as the age of 10. At times my internalised pain gets so bad I’m feeling pain in varying parts of my body to the point of crying or loose control over my limbs. I often crawl around in my flat because my knees give in again. I’m reduced to being a cripple with absolutely no physical reason whatsoever. On my bad days I barely manage to eat even half of the amount of food I should eat. I’m not sure anyone should try that hard. In fact I have ceased being in contact with my family 2 years ago and I never looked back. Anyone telling me I was fine all along should strongly consider which level of pain would be necessary to be inflicted on them by their own flesh and blood to completely stop interacting with them and not even consider going back. No one who is just fine does that. Especially not without looking back. And I feel the lack of familial support all the time, especially now when various holidays approach again. I know what I paid for to improve and I haven’t improved much yet. I paid for a chance. Nothing more. I want to become better that badly.

So with all that in mind you now should have a fair idea what kind of iron grip one needs to have on oneself to appear able languaged. You might have an idea why I abhor using this skill strongly. At one point I was in the same position a the person writing the blog I linked in the introductory sentences. I wonder if they go through the same amount of torture to appear normal. The idea that I needed to pretend being normal to be allowed to exist even on the lowest form possible is still burned into all levels of reasoning. And yet I have a number of issues causing me undue pain. With the motivation to be rid of that pain I metaphorically jumped of the cliff. For me there was no suicide more real than not speaking anymore. But surprisingly enough most people outside my family have been most understanding. Normally I am Wernicke active enough to at least explain what is going on with me and what I need to get better in so many words. So far no one but my family have denied supporting me in improving the situation I find myself in. I am not confident enough yet to disclose my condition to officials (such as doctors, financial managers asf) for I still fear backlash but my next big goal will be to disclose to supervisors more. I can only encourage people in similar positions to find their voice by loosing it.

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