Using the internet and technology with high needs autism
I have been trying to put this into words for a while, but due to the exact thing I am making the post about, it has been very difficult.
First of all, a short (ish - I am not the best at concise) background of me and technology: Used to play games on dad's phone, and later watch YouTube videos on family tablet (with parent restrictions). However, ability to navigate devices was very limited, and if something went wrong I just panic and give to an adult.
We used computers a bit in school for work and educational games. Every time we went to the "computer area" I would cry because I knew I wouldn't be able to find the webpage on my own, or sign in to something, or type in a word document. At these times in school, usually another pupil would just sigh loudly and then come and do the computer thing for me over my shoulder.
I had an MP3 player that I got for I think my 8 or 9th birthday. The only thing I knew how to do, was play music and google search. But I still didn't really understand what a "link" was, or how to find important information. We were supposed to learn online research skills in school, but nobody ever explained the most simple stuff to me, so I lack the basic knowledge.
I got my first phone at age 10. This was when I also first get Instagram, my first social media (parents set up for me). I was in a group chat for my school year, but the only time I put a message there is when mum asked me to ask a question, about a non-uniform day for example. Nobody interacted with me in there, and apart from the messages I don't know how to navigate the app. I posted a few pictures a few times, but only when someone else recommended, and I didn't interact online.
I have poor language comprehension, slow processing and take longer to learn new skills. My computer skills and especially typing skills are majorly behind my peers. I have slowly learned some skills allowing me to be even on Tumblr in the first place, but I still need a lot of support and it makes me very anxious. Part of my difficultly on social media, is the social interacting part. Mostly due to low interest.
But my biggest challenge is poor comprehension. I get very anxious and upset when I come onto Tumblr and all the posts I try to read don't make sense to me. Especially when the post is about a topic I care about - if I read it and I can't know what people mean, then I will just be very upset for the rest of the day.
Second biggest challenge, not being able to express opinions on important topics. Often, I can't even understand something. Then, I can't form an opinion because it's too complex. Or, I have an opinion, but I don't understand if someone agree or disagree with me from what they write.
I work so hard to gain skills and learn enough to even be here, and then all I can find about people like me is other people arguing about our existence. Want to express my frustration at this. To even write this post I had support from mum, and it takes all my mental energy.
It is true that I have low interest in socialising - direct impact of autism. So social media maybe not best place in the world for me, by default. But I still want to understand and be included. Not be treated like place to just ask "am I counting as high support needs". I don't understand even my own needs enough to answer this for myself - I definitely can't answer for anyone else.
A lot of my challenges, come direct from autism. That's just a fact. Wish it was easier, very often. But also wish it was easier online - I can't be part of outside community, only online.
I post here to express thoughts and feelings, that is also just what this post is doing. I did less big big edit on my words this time, wanted words to be closest to how I think it (don't think in words so not possible to show abstract thoughts direct, but closest to first translation).
hello! i have rlly cool apps for systems! [and the second one is for nonverbal folk n alters n stuff!]
first app is Simply Plural!
it helps track switches, and you can also have a bunch of system information there!
they have a discord where you can suggest changes and it even links up with PluralKit so you can import your system (and i believe it syncs switches through PK as well!)
its completely free and really helpful! you can even have custom statuses like one that we have which is "nonverbal" :D
its still being updated and worked on but its amazing! you can also add friends on there!
it works for android and apple!
update: [there is also a web version of it! it links everything over, but it does have a bit of trouble with a few things that you can only do on mobile! ive personally come into two issues only, and they are that that you cant change your system profile photo on the website for it (this is due to funding! not their fault at all :D!), and i have significant trouble selecting any amount of text, but its all good and dandy!]
second app is Leeloo!
we recently found this app when our nonverbal little was in front, and its been super helpful!
its an AAC app for nonverbal/semi-verbal people, alters or other, and it allows you to ask questions or ask for certain things through the apps buttons that go through into text-to-speech!
it has a really cute artstyle all around and the icon for it is just adorable!
the packs they have are really helpful, and despite a lot of button packs being premium, all the packs that are free are extremely helpful! i know our little is looking forward to using it around a friend of ours we are seeing soon!
you can change the voice that is produced to say what is needed, and you can even turn on and off the vibration feature for when you press things!
it also allows you to add multiple people to the app, im guessing so you can have it logged into multiple, what is calls, "children" on different devices!
it only takes an email to sign up and its completely free besides the premium!
also for leeloo i would love to mention that everytime you open it and the person using it is logged in to their 'account' of sorts it says "hello [name]"
i just went to check it out again to make sure i was spelling it right and our little got so happy hearing the "hello [his name]"
Third and fourth apps are Cough Drop or Symbotalk! (This is taken from @sunken-courthouse 's reblog!) -> "We have used both and they both have web versions and apps. they're more "traditional" AAC boards where you tap on images instead of typing, but if you have a good board and know how to use it, it works just fine if not better."
Sunken Courthouse also suggested our fifth app, Antar! -> "It lets you text 'yourself' thru different profiles. it's much more aesthetically pleasing than other apps too." Though they did state they believe it is only for Android.
hope this helps!
update: [PLEASE feel free to add onto this! i believe our asks are still open, and because we are viewing tumblr more, and if you want us to add it on ourselves, please ask us too! we would be more than delighted to!! :D]
[hey! we keep seeing people reblog this, so here is an update! (5/12/2022)]
[moved the update to the bottom, edited title for more apps, and added two more apps for nonverbal folk! (8/11/2022)]
(Tw for a VERY brief mention of infantilization)
I want to talk about interacting with AAC users in person, specifically for speaking people.
1. Being an AAC user, I get left behind during conversations a lot because it takes me longer to add in my statement. By the time I'm done, the topic has oftentimes changed and then what I want to say isnt relevant anymore, and sometimes wont even be understood because to everyone else what I just said was out of place and random. This feels really frustrating and sometimes isolating, as well as embarrassing. Please wait for us, we want to converse too.
2. Sometimes when I am not yet done responding, people will watch me and try to guess what I'm going to say. If all I've got down so far is "I already", people might go "I already.. know!" "I already.. saw!" etc. Please stop doing that. Even if you got the idea correct, you might use the wrong words, which frustrates me. And even if you say it all correctly it's still frustrating, imagine if someone tried to guess what you were saying by interrupting you every time you started to talk. It's annoying.
3. Dont comment on what in our folders. If I open a folder to get to another word, and whilst doing that you see a different word in it that's funny or inappropriate or whatever, keep it to yourself. Its annoying. You have acsess to those words, and it isnt treated as weird, so why is it for me?
4. Don't infantilize us. We aren't perpetually children. We are our age. Treat us as if we are a speaking person of our age.
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.