#sina I hope this is long enough to help fill the nonverbal tags !

[perplexingluciddreams]

A “brief” overview of my communication journey:

My verbal communication was always limited to echolalia and scripts (by scripts, I mean pieces of different echolalia that I stuck together to create a new phrase, or longer several-sentence delayed echolalia. But I didn’t learn to do this until I was at least 9 years old). I also had very limited control over what my mouth said - I would regularly hear my mouth say something I completely disagreed with, then had to watch in panic and confusion as the people around me reacted as if it was something I actually thought.

I used to request things that I didn't even want. "I want..." statements were banned in my house because they were "rude". “I want never gets!” I had stuck as a script for the longest time, even involuntarily saying it when other children said an “I want…” phrase.

I was given examples of how to request things by my parents. I used "I would like...", "Can I have... please", etc. But this didn't give me a reliable way to ask for what I wanted - I could only ask for things I had a script for. So I was limited to a handful of foods and objects that as I grew older, I had less and less interest in.

Saying "please" and "thank you" was drilled into me so much that I would often say it at the end of other unrelated scripts because it got "stuck" there by my mouth, without my permission. I got laughed at for this a lot.

I would say "yes" when I meant no, I couldn't reject things because I didn't have a script for saying "no". And I had been told to be polite so many times that it was a concrete rule in my mind - breaking a rule was worse than anything else. Saying "no" was rude, according to the adults around me - if another child said "no" to something, they were told off by a teacher or their parent. I didn't understand tone of voice so I thought it was the thing they were saying that was wrong.

As I got older, and became more aware that other people seemed to have more control over their voices and could say what they wanted (my general awareness of people and my surroundings definitely played into my struggles with communication, but I won’t elaborate on that here) I would sometimes sit in my bedroom and attempt to read aloud from a book, or write a sentence and read it aloud. To my confusion and upset, it would come out garbled with sounds mixed up, words missing, sometimes no sound coming out of my mouth at all. I couldn't make intelligible speech with my own words AT ALL.

I managed to teach myself to manually make some sounds, mostly vowel sounds, by moving my tongue around whilst making sounds with my vocal cords. But clearly this was not enough for using spontaneous speech as communication. Not to mention, any time I even considered trying to get my OWN words out (with speech, writing - even drawing pictures, signs), all words and scripts I knew just disappeared from my mind.

The only time I could even slightly get my emotions out was through movement - I used to throw myself backwards onto my bed repeatedly, bang my head with my hand, pull my hair, spin around in circles. I now know these would be called "stimming", but at the time I used it more for expressing myself. I also had other repetitive movements that I did almost constantly without even realising what I was doing, but I considered the expressive movement to be a different thing entirely at the time.

It took me years to get my own words out, and that was only once I managed to break down (spoken AND written, and both connected) language into individual words and learn the meanings, then learn to build it back up again. (And, this could only happen after I’d lost most of my out-of-control scripted speech. AAC with symbols helped me break down language in this way, because each word has a separate button and I was forced to learn to form sentences without an already-there structure to fall back on).

In order to do this, first I must take the long string of noises, and break it down into words. Then I must take those words and process the meaning of them individually. The biggest challenge, and the thing that takes the most time, is building the sentence back up.

Words often change meaning when they're strung together, and this is the part where that meaning tends to disintegrate into nothing, for me.

I have to build an abstract "picture" of what the words mean in my head. With very complex language, or a lot of language at once, this can take me hours, days, or even weeks.

Written language is a lot easier to process - firstly, the "string of noises" part is completely eliminated from the equation. Secondly, I see written words as entire shapes. Shapes, symbols or signs connect much more strongly to their meaning, in my head.

I learned to write by hand before I could type, because writing by hand is just copying the shape of a word. I hadn't yet learned to break down a word into it's individual characters and sequence them in the right order, not to mention finding the letters on the keyboard. My spelling has always been fantastic because of my tactile memory for words - and I say tactile instead of visual, because I don't "see" anything in my head, but the shapes of words are something solid that I feel I can touch, hold, grab on to.

But typing was a completely different thing, because even though I could recognise and read words in a typed print, it took longer for me to understand how to put letters together in the correct order to create words using a keyboard. The motor plan for typing was much more difficult for me to learn, but now I have that skill it's invaluable to me in terms of communication.

It took me a little while longer to realise that a keyboard gave me the opportunity to use my own words from my own mind, rather than whatever my mouth (or brain, when writing - I had different written scripts than verbal scripts, though, usually from books) happened to blurt out without my control.

I learned to read very early, but my understanding of language was actually quite poor - separately I could recognise the definition of one word, but when many words are put together I didn't understand the meaning of that sentence or paragraph.

The feeling of being able to put my own thoughts into written words like this, and read them back, is such a rush of power. I can have a concrete, physical impact on the world now that I can use a keyboard and get all the things in my head out there. It becomes real as soon as it's outside of me.

I remember that "comprehension" (answering questions on a written passage - we learned to answer the questions in a certain way, with a “blueprint”) in school really helped me with the breaking down of sentences and rephrasing them. Even though at the time, it just felt like it added to my out-of-control scripted speech, it gave me a skill that has been incredibly useful to me in the long term.

Getting to this point, where I can express myself fluently and eloquently through written language, took so much time and work, and still takes all my energy to write something as long as this. I am so grateful for the genuine communication I have now. It took many sessions, over months, to write this in its entirety. I wrote it in separate chunks, all trying to express similar things, then fitted them together and altered some sentences to make it flow better. (Of course with lots of editing to fix my grammar and my tendency to repeat the same sentence structure over and over - I still use my “blueprints” while writing, it’s the only way I can form complex long sentences like this one).

In order to communicate a memory or past experience in words, I had to have been actively translating (or attempting to translate) my abstract thoughts into language at the time.

If I wasn't or couldn't do this at the time it was happening, those experiences, thoughts, emotions, etc. are almost impossible to describe in language now.

And translating my brain takes so much energy and effort, and relies on me being able to understand what is happening and what I'm thinking and feeling. I more often than not don't comprehend my own mind - if this is the case, then of course I can't explain it to someone else.

It still takes so much time, effort and energy to get my thoughts out like this, and I’m very proud of the progress I’ve made. Even just learning to use Tumblr and posting on here as regularly as I can manage (plus reading other people’s words about similar experiences, or even very different experiences), has increased my ability to express myself and the vocabulary I’m able to access.