Autistic AAC Underground: 2022

AAC in the cloud presentation 2022 on EyeGaze AAC for Autistics,

below is the video and under the video of the presentation is the script/ text as well as a link to sources for quotes and more. thank you

Dia daoibh is mise Saoirse (Hi , I'm Saoirse) i am a multiply disabled Autistic AAC user.

Today I am going to talk about eyegaze, and autism, when it comes to eyegaze, most people don't consider anyone in the autistic community as anyone who could need, use or benefits from access to eyegaze systems, eyegaze is only ever considered for individuals with clear motor and mobility based disabilities, such as Cerebral palsy

however, motor issues, that, so often, come with autism, are not only, widely spoken about by autistic community, they are well documented and there has been a fair amount of research into them. So why are we ignored when it comes to this access method?

My first experience with eyegaze was years ago, at an abilities expo, it was at one of the dynavox stands where they were demoing the device,

We were looking at all the AAC stuff they had, and I was super excited, because, it was one of, i think, 2 tables that had anything, for AAC at the expo, so I was really happy to see AAC stuff.

I looked at all the AAC things they had, including, some free, communication board handouts, as well as a few other AAC system, including one with head tracking, then we got to see and test out the eyegaze system,

I didn't know what to expect, I had seen and heard of eyegaze before but hadn't had much expectations beyond knowing the basics,

They did the calibration and it just worked, like really worked,

I know, that sounds weird, it's a demo, of course it worked! Why wouldn't it work? That is, what it is there to do, they show you the product and you expect it to work,

but this was diffrent, this wasn't just a “oh cool this works I see, neat, nor was it “oh wow cool that's so fun” this hit on a whole new experience and something I wasn't expecting or really prepared for, this worked by suddenly hitting a whole new level of access I hadn't experienced before, it was smoother, easier more automatic, in many ways almost more natural feeling,

Suddenly my brain and body had less blockages between eachother to work through to get the words into a sentence bar, this was smoother faster, more intuitive and direct in a way That My own hands were not.

my body, isn't intuitive, it never has been, it doesn't reliably listen to the things I want it to do, it is like the messages my brain sends get lost. or my body decides it's own thing to do, possibly because the message got lost, maybe it gets jumbled or the messages all take so long then all hit, at once, I don't know but for whatever reason, getting my body to work in ways I tell it. Getting it to, Reliably doing the things I want, for example, getting my hands to work how I want, with the right speed, right pressure, selecting the right things has always been a battle,

I use symbols more than typing, for many reasons, but one of them, is related to the fact that, when I type, my hands won't reliably listen, and type how I know they are supposed to, and instead, they just add random letters in the middle of words, or misses letters, or, adds random spaces, and it ends up being a mess, and way more work to type for communication, than it does to use symbols which are pre-typed and spelled clearly

Most of the time when typing, or using symbols it takes a lot of effort and there is often a fair amount of lag.

I can't consistently get my limbs or, hands to do what I am actually wanting. This can be easiest seen in my typing, where random letters appear as I type, or I hit the spacebar or other key at random, when I am not trying to. Sometimes it feels like my body gets stuck on a loop, and I have to put effort in to make it do the correct things I want,

It also shows up a lot in things like hand writing when other letters in the middle of a word, nó matter how careful i am or how hard I'm trying to write well, this can also just be seen with dropping things, hitting the wrong button, when I get stuck hitting the wrong button multiple times and need to hold my own wrist to help myself get to the button I want, and so on.

Many Autistics have spoken at length about similar experiences, this experience in the Autistic community is called the brain body or mind body disconnect. many Autistics experiencethis brain body disconnect on some level to a greater or lesser amount, and how much seems to vary from person to person

This experience lead me to start looking into if it was possible to get eyegaze but the more I looked the more I realized, it was basically near impossible, I had a lot of hope about eyegaze becoming much more accessible when it became known the iPad pro cameras were good enough to do eyegaze, there were even apps, that worked with it, and coughdrop was In Fact doing eyegaze with it!

And for a while,though spotty, it worked, however, it was too inaccurate without an eyegaze bar to really do well on the iPad pro, as my device got older. There was an eye gaze specific app for ipad pro that would have improved it’s accuracy, however didn't seem Compatible with coughdrop, I continued to search for a while, trying to find new ways to make it work, or to get access to eyegaze, I ended up finding a lot of dead ends I eventually gave up, and I had assumed that was the end but it was not

A few years went by and had basically given up in eyegaze access,when things started to change and started going again. One of the people on my supporter team, sorry I'm not using names cause I didn't get consent, had asked if I had looked into eyegaze and suggested we look into see in if it was possible to trial eyegaze. they thought It would be helpful for me and something we should try looking into. So I agreed. and we were set up so I could trial an eyegaze system. I ended up trialing a windows tablet with a eyegaze bar from the local lending library for my trial.

I ended up trialing a windows tablet with a pc eye bar for a few weeks, over that time I had an adjustment period, and given the device didn't have my traditional level of protective case I was extremely careful and it stayed in very, limited places.

Having eyegaze access for that trial period was life changing, So much was made easier or more accessible.

the first few days of the trial period, i spent, time getting to know and to learn the system. I also had to spend some time to workout some troubleshooting, and finding the right positions, and, places, that worked best. The first few days, i had to be, encouraged to take sensory breaks, as my eyes adjusted to using eyegaze. As it made such a significant Difference for access, I needed a reminder to take a break and rest my eyes, as I would use it passed when my eyes were tired,and sore, as they were not yet used to this access method, but the more i used it the more access improved!

it was so much more intuitive, it was often faster, smoother, there was less of a delay between my brain and getting the symbol or typing the word, even when I had to deal with errors because the calibration was a bit off it still was more effective, suddenly I was not spending so much effort to get my hands to hit the right things only to hit the wrong things,

While my symbol use was better, faster, more effective, something else changed too. Suddenly I could type! No really I could type!I could type clearly, with, no spelling errors,I could type my message out without, random letters, or, spaces appearing in my words and when, using eyegaze my typing became like that of my peers, or as close as it ould. While this might sound small to you, I really can't express to you, how life changing, being able to type out, clear words, was. where people don't have to squint and guess what I was trying to say. I suddenly could choose to use symbols or type and have them be equally understood, that's never been a thing.

Throughout the trail period i spent a lot of time bouncing back and forth between selection speeds, some days I needed a slower speed some I needed it faster, what worked,varied each day, but switching between them helped a lot too

Additionally eyegaze massively improved general access to AAC, in situations I normally wouldn't have been able to easily use or access my AAC, for examplelé I suddenly had access to AAC when I was doing things where my hands were busy like eating, when eating i didn't have to pause mid meal, pick up my tablet mess up my screen to be part of discussions.

more importantly it gave me access in times where I just wouldn't be able to or wouldn't be reliably able to use my current forms of AAC. Specifically on my really bad neuro days, where I had significant issues with coordination and motor skill as well as after seizures. I wasn't needing someone to help hold my tablet or a letter board in order to use communicate, was was having basic needs neglected because I wasn't being able to use my current forms of communication and people weren't just assuming I wasn't trying to communicate.

Currently we are in the process in figuring out changing around what devices I am currently using for AAC, to make it possible to attach an eyegaze bar, so we can try get and set up eyegaze for me. This us going to take time and not garenteerd but the hope it to actually make getting eyegaze for me even possible, and still have a system that will work for my needs and situation

While one of the reasons I need this is for after and around my seizure it's not the only reason,

the other reason eyegaze is a important access option for me is due to motor issues i explained above, Trouble, coordination my hands and movements, my body not reliably doing the things I try to do, such as not reliably typing correctly, or, not doing the correct hand motions, to select or do a specific thing and so on. For me the extent of this can fluctuate from day to day with bad neuro days and after series being the worst

However for as long as I can remember my ability to get my body to move and work in the ways I'm trying to do or even do the things sometimes has been a battle since i can remember,

This disconnect between getting the brain and body to work together has been spoken about a lot by many others in the Autistic community as well, and tends to be referred to as the brain body disconnect or sometimes mind body disconnect

Mel Baggs, a multiply disabled, Autistic, activist, wrote about movement issues and autism, in hir Post, titled, excuses to be a jerk, BADD., in this one example of the movement issues autistics experience hir wrote, quote. “A person can also be unable to move voluntarily without involuntarily moving other body parts that aren’t at all necessary to the movement, and that also aren’t the kind of movement that neurologically standard people do. (Neurologically standard people do seem to move more than they have to, but the moves are all coordinated into particular expressions and postures and such that are very different than what I’m describing here. A person doing what I’m describing will normally look awkward or unusual when doing it.)” end quote

Ido Kedar also describes the mind body disconect in his log,most recently in one of is blog posts titled, “a challange to Autism professionals,” Ido wrote,. “Here is what I would have told them if I could have when I was small. My body isn’t under my mind’s complete control. I know the right answer to these thrilling flashcards, unfortunately my hand isn’t fully under my control either. My body is often ignoring my thoughts. I look at my flashcards. You ask me to touch ‘tree,’ for example, and though I can clearly differentiate between tree, house, boy and whatever cards you have arrayed, my hand doesn’t consistently obey me. My mind is screaming, “Don’t touch house!” It goes to house.” end quote

In their YouTube video documentary reframing severe Autism Damion Kirsebo, explains quote,. ”I can perform learned movements easily.…such as using a computer, or cycling. This fools people into thinking that whatever I can do physically reflects my intellectual functioning. Really though, my apraxia means my body and mouth have minds of their own. I need help in order to learn new motions…even though I completely understand what I am meant to do.”End quote

Emma Zurcher-long writes "imaging having to live with two separate moving parts that have not mastered the skill of sharing. welcome to my colorful life" as an introduction to a poem about the mind/body disconnect

Nikko Boskovic, wrote quote “"HANDWRITING IS IMPOSSIBLE FOR ME TO DO. REALLY HARD. MY BRAIN WANTS TO MOVE THE PENCIL A CERTAIN WAY, BUT MY HAND HAS OTHER IDEAS. ALSO, I CAN’T SAY ALL THE THINGS THAT ARE ON MY MIND. ALL I CAN DO IT RELY ON THE PERSON HOLDING THE LETTERBOARD.

LIVING LIKE THIS HAS MADE ME GIVE MORE THOUGHT TO THE WAYS IN WHICH PEOPLE LIKE ME COULD BE BETTER SUPPORTED THROUGH TECHNOLOGY. LIKE WEARING SOME SORT OF DEVICE THAT WOULD READ MY THOUGHTS AND VERBALIZE THEM FOR ME. I BELIEVE THIS SORT OF TECHNOLOGY IS COMING." End quote

Both Apraxia and dyspraxia are regularly studied in relationship to autism and there a ve been multiple subjects on the topic, I have included a few links to studies on this in my resources.

Motor skills vary a lot for every Autistic, it's also important to realize, that someone can have both really good, and really bad, motor skills, because there are so many different types and areas of motor skills,some Autistics may have really strong larger er muscle motor skills, so things like balance and walking but struggle with fine motor things like using Hands and fingers and so on. Other motor skills are things like, oral motor,and, visual motor skills, for example I struggle a fair bit on most of these. With both big motor skills, and, visual motor skills being my strongest and most reliable of these, though even those motor skills have delays and challenges, though more with the body movements Than With visuals I think.

While eyegaze AAC isn't perfect, and has plenty of things that will make it more of a barrier than a correct or even a useful access method for various individuals. Having to deal with some less ideal things about an access method are often workable for some compared to the life changing value it can provide, and most of these are manageable. I hope one day some of these become, less of an issue as tech improve

One early draw back or barrier is that, eye gaze Can be tiring when first starting out, it takes time to adjust to, using your, eyes, that way, I know for at least the first week of the trial I needed to take breaks, the early adjustment period and Needed for breaks especially in the beginning can be a major barrier for many,

Eye gaze can also take time and to learn and really get the hang of, which maybe something people don't realize right away, even when it starts off perfect, you need to get to know your system and what positions it works well in and which ones it doesn't. It especially takes time if you are also learning a whole new AAC system with it in addition to all of that.

As currently Eyegaze is very position sensitive, some systems are significantly more accurate at different distances and positions than others but you need to have just the right position for it to really work well or at all. Too high or low the system might not see your eyes, also because it is so position sensitive it can't really be used while walking, and really eyegaze systems currently aren't made with walking AAC users in mind.

And there are many conditions that make eyegaze not work or not an option. And that is OK.

Another thing to consider is that Dedicated eyegaze devices are often heavy and bulky, which makes sense, they are primarily made to be stationary objects and are currently primarily made with wheelchair users as the primary customer base.

Though the biggest issue with eyegaze access or even getting it considers comes down to insurance, it Usually doesn't,, eyegaze is near impossible to get covered by insurance for people who are traditionally,considered candidate for an eyegaze system, so getting insurance to even look at autistics for eyegaze currently seems near impossible, which also means AAC companies and places that make dedicated AAC devices are less likely to consider Autistics as anyone who could benifits from such an access method.

Eyegaze has its drawbacks, but, those shouldn't be used to overlook an access methods which isn't dependent on our Unreliable bodies, and, which could make a world's of Difference for someone, the fact that currently autistics motor issues are almost never taken into consideration, beyond suggesting, maybe, a key-guard, if your lucky is a major issue, and alternative access methods like eyegaze need to start being looked at and offered.

Eyegaze allows for a direct access method not dependent on our unreliable bodies. In anyways this method is more direct than things such as switch scanning and requires different motor control the head tracking, though that too should also be offered as an option,

Both times when I looked into eyegaze the question of switch scanning came up and this did not work for me for multiple reasons that were not issues with eyegaze.

First i became overloaded, both, with, listening, or trying to just track. and plan where to hit to select, it was literally a sensory nightmare for me. if I was listening to I would hit auditory overloaded, and if I was just visually watching it scan, with no sound, I quickly forgot what I was trying to say, and became overloaded, as It was t

scanning a highlight going box,by, box, by, box and so on. And I almost never hit the item I wanted to select reliably on the first try and would have to delete and wait again. This was, not, an issue with eye gaze, as it highlighted where my eyes were, and selected based on that

The other issues was the needing to actually make the motor skills to do the thing, at the right time, and even with slowing it down we run both into a motor issue and a pacing issue,it can only be so slow before or the other party loses interest in my message getting out, or I get so frustrated I hit meltdown, switch scanning relies too much on being able to process well and bodies and motor skills being reliable I nó autistic ways.

Having an access method that, isn't, dependent on, our, unreliable bodies, is so important, Even though there are these drawbacks, we have to deal with them, this access method doesn't rely on our bodies using unreliable hands, and,movments. This might make high tech AAC available to autistic people who it isn't currently accessible to, and more accessible to others. For me Not needing to rely on hands has been life changing. Not only did it provide access to AAC in situations like being able to participate in conversations during meal time, or during activities requiring my hands. It was the difference between being able to have, reliable AAC access. or not, both after seizures, as well as bad neuro-days! And when i got stuck in loops or was being unable to reliably coordinate my hands and movements.,

Motor issues in autism are talked about, but that doesn't mean that they are taken into account when talking about things such as alternative access methods and AAC nearly as often as they should,.

Eyegaze is an access method that I know I personally have found more intuitive and work more naturally

Hopes for the future of eye gaze,.

When looking at the future of eyegaze, there are a lot of changes that can and should happen..

There needs to be more eyegaze bars made widely available for more systems, such as ipad android, and, so on, and for them to be significantly more affordable than they currently are.,

Currently, there are very few eyegaze bars, Most of them run on windows systems, one or two can run on ipad I have yet to find any that run on android, as android is often left out and that needs to change and most of them are extremely expensive and you need the help of insurance, savings or a grant to cover especially if you are low income as most disabled people are. This limits who can access them a lot

One day, I hope eyegaze will be more widely available, and just included as, a standard accessibility feature in most devices sold in the market.

We know that the iPad pro has cameras good enough to do eyegaze. And for a while in 2019 Samsung had some very basic eyegaze as an accessibility feature in one of thier phone,.

Having eyegaze as a standard accessibility feature would, not only, make eyegaze accessible to try as an access method by anyone who could benefits from or really use eyegaze, but who would not, have traditionally been considered for it, but it would also likely help to improve eyegaze accuracy and, usability, as it would be more widespread,.

If we want to talk about really advanced tech. One day it might be really neat to have glasses, that could use that Bluetooth with an AAC system or tablet, to work as an eyegaze access method instead of an infrared bar . But that seems really far ahead tech.,

More realistically I would also like to see, more smaller, lightweight eyegaze systems made available, and eyegaze systems with walking eyegaze users in mind, as the autistic community is, unlikely, to be, the only community over looked when it comes to motor issues and peoplr who could seriously benefits from eyegaze,.

Most importantly I'd like to see eyegaze considered and offered and made available as an access method for nonspeaking Autistics, and for our movement and motor issues to be taken into account. More than just offering a keygaurd if they think of it as something to offer.,.

Go raibh maith agaibh, thank you

Resources

Blogs and and people I quoted

Mel Baggs

Excuses to be a jerk. (for BADD)

https://ballastexistenz.wordpress.com/2008/05/01/excuses-to-be-a-jerk-for-badd/

Ido Kedar

A challange to Autism professionals

http://idoinautismland.blogspot.com

Emma Zucher-long

https://emmashopebook.com/2015/03/10/i-am-more-than-my-body/?fbclid=IwAR0D6feIfsCYsT6EAq-BAiGW2uSl7n8ETNuSIZt_B9gIdAeNeZvX9BJgK3A

Nikko Boskovic