EyeGaze AAC for Autistic 2022 AAC in the cloud presentation

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

What tís lime to have Autism

https://nikoboskovic.wordpress.com/2016/01/27/what-it-is-like-to-have-autism/

Damon Kirsebom

Reframing severe Autism

https://youtu.be/CtK9paFGUjc

Studies

Dyspraxia and autistic traits in adults with and without autism spectrum conditions

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5123360/

Dyspraxia, motor function and visual–motor integration in autism

https://www.sciencedirect.com/science/article/abs/pii/S0166432814002290

How Valid Is the Checklist for Autism Spectrum Disorder When a Child Has Apraxia of Speech?

https://pubmed.ncbi.nlm.nih.gov/26114615/

………………………………

Survey to get Geailge (Irish) AAC!!!!!

Dia dioabh (Hi everyone,) 

Below is a survey by trinity college into research for making Irish AAC!! I'm going to talk a bit about AAC,AAC stand for Alternative augmentative communication,  basically these are methods and forms of, non-oral, speech based communication used to help with communicating for  anyone nonspeaking, unreliable intermittently speaking, and anyone with any communication based disability or disability that impacts communication or oral speech such as Autism, cerebral palsy, AL'S down syndrome. Migraine disorders epilepsy etc

This is something that has been something that's been really important to me for a long time ó I'm sharing it here to hep get the word out, 

this survey is part of really critical research into providing AAC as geailge (I irish language. Thus is critical for making sure nonspeaking, unreliable intermittently speaking, and anyone with any communication based disability or disability that impacts communication or oral speech such as Autism, cerebral palsy, AL'S down syndrome. Migraine disorders epilepsy etc can have full access not just to their ciriculum but their community and native language.  Le do thoil  (please) help and fill out the survey https://tcdecon.qualtrics.com/jfe/form/SV_d3TaXkpl4HMrqGG?fbclid=IwAR0cHPauqlyIR2KWbx2tWhdpUsVtvPO5bmPGIhQLYYQAu9n_K0EAZnpte9w

Go raibh maith agaibh (thank you everyone)

Tonight i start a long project in one of my AAC apps

Tonight i start the long exhausting process of making a whole new user profile in proloquo2go to match the one on my cough drop app. I am going to do what i can to get my use vocabulary  as close as possible in proloquo2go to match how it is set up and laid out in my cough drop app.

For those who dont know i have 2 primatpry AAC apps i use on a regular basis coughdrop and prolaul2go, i regularly a, switching between them for various reasons through out the day. However their vocabularly set up and language (how you find where the words are ) is very diffrent. Since im constantly bouncing between these two apps i need them to umm have some uniformity cause its a lot to master both of them with how much my brain has been having issues lately, so im going to try to match the prolquo2go to my coughdrop app because it seema like the correct direction as it works a bit easier ish with my brain right now for language lay out,

There will still be diffrences like how i add endings and such but hopefully this helps thing be more effective in general!

Stop locking up our AAC systems in class rooms or in therapy rooms.

AAC  access needs to be 24/7. Al, to often I hear about, and i see posts about autistics and other aac users who only have access to their communication devices and AAC systems inside of the class room or only with in the therapy session then after that it is taken away, they are denied further access to their voice for the rest of the day, this isn't only probably the worst most ineffective way of teaching AAC i can think of, its flat out cruel and quite honestly should be counted as abusive, it would be a kin to gagging or otherwise forcefully silencing every non disabled reliably speaking child outside of class or specific one on one session, it just doesn't make any sense, and is flat out horrific to even imagine or think about, but when you take away an AAC users device that is exactly what you are doing.

Often times this is excused or written off as “we are waiting for them to show they can be proficient or know how to use the system, or “they push the same button too much they dont understand how to use it for communication yet, they only stim off it so they can have it outside of class or therapy once they show they can meet x level of proficiency and use of their system, but here the thing and i'm going to say this plain and clear…..

No one should have to meet x bar of proficiency before having home access to their AAC devices and systems! 

Access to AAC must be available at all times! 24/7 anytime or situation you can think of that you might wish to say something is a time or situation we need access to our aac, (this is in general i don't mean any time you might wish to talk to us, i mean you might want to say hi to some rando on the street, or you might want to ask for help, or you might want you yell from the bathroom or shower? Yeah those are times they too will experience in our own life and when we will need our AAC.  it is wrong to deny it to us just because we haven't met your bar of good enough to be allowed to communicate outside of sessions,) 

Insisting  we need to show they have learned how to use AAC effectively or to a certain level enough to have access is really just flat out wrong and counterproductive to us actually being proficient in being able to use our communication systems, that's not how anyone learns anything ever, more importantly that not how anyone learns language be it a foriegn language or  how babies learn language, in fact when it comes to both those its through interaxrions, exposure and some play,  

Let's look at babies first. Babies aren’t only spoken to in half an hour to one hour session, when learning language babies aren't taught it in a vacuum of  in a regimented session. Nor only allowed to try speech and have speech modeled for them in specialized environment, babies aren’t restricted to only being able to hear language and use it in a specific place until some professional signs a paper saying they are ready to use it outside their office, when babies babble and use one word over and over and over this isn't seen as a negative, and we don't assume they haven't grasped the concept of trying to talk yet, or that they aren't interested in learning to talk and just want to make sounds from their face, no babies bare allowed to babble  everywhere and play with language, we encourage it, when a baby says even one word we are excited we repeat it with them. We make sounds and babble with babies too! When teaching babies and kids language we play with language with them and model language and communication for them everywhere, as they get older we start playing word games if they have a few words we might make silly sentences with them! And we certainly leg them make as many of their own silly sentences! We don't begrudge a relatively speaking kid for yelling “cat meow bees ice cream truck book ,”. Or some other silly sentence, it should be no different for AAC using aac to do the same, And learning AAC should be no different,

when it comes to learning a foreign language we don't only allow the people learning the language to only have access to that language in the class, that would be asinine! We do, not entirely, the exact opposite,  class is used to refresh and go over new things but for real learning and getting practice and proficiency in knowing and using the language? we push them to use it outside the class! We want them to use it at home, with friends in their community,we tell them to go watch the tv channel in their language and listen to the radio stations using it. we encourage them to find people who speak that language and interact with them! In fact, it's really important and critically they meet and interact with native speakers of the language and practice using it with people who really know the language and who have been using it! AAC should be no different!  In fact exposure to other AAC users is one of the most important and overlooked aspects of teaching AAC and that needs to change! We need to see not only our peers using aac but also proficient adults using ir! And one day having more representation in things like tv would be nice too!

Stop making AAC so clinical, let us use our devices! give us access to our voices the moment you have them for us, let us take our systems home, let us play with them, let us babble and hit the same word or 6 words over and over and over again, let us make silly sentences,  provide our family and friends with at least low tech versions of our high tech systems and copies of our low tech systems and teach and show and have our family and friends how to model and have them model, help us find and meet other AAC users, let us have playtime and social time with other AAC users, language isn’t learned through trial training! its learned through exposure, modeling, playing with the language, its learned through repeating words and sounds and making silly sentences, its learned through interacting with others. when it comes to aac that means interacting both others who use the language  and also those who use speech, but no matter what, what matters here what is really important is that language real world interaction and we have access to our communication systems in the real world, in our community with our family and friends not just in some sanitized trial training environment which isn't how language is learned.

So please stop with holding our AAC systems, we not only d

Deserve 24/7 access we really need it! 

access to Low tech AAC supports is just as important as having high tech AAC

yesterday, a friend and i ended up going to a water park, i was all excited to go, and ready! my ipad was set in a water proof case (at least according to amazon it was ipx68), my brand new waterproof speaker, and my letter board, along with my expected swim stuff.  we were ready for a day in the water and being able to have my ipad near or on hand, and maybe even in one of the pools if i used a tube and was careful anyways.

however  things didnt go as planned, and as i got out of the car tragedy struck! my ipads caught between the seat and the side of the door as i stood up, ad this was followed by a loud *crack* i knew immediately what had happened! i looked at my device and the screen was shattered. lies streaked across the screen and bits of glass moved around and crunched under the screen protector as i poked it to make sure it was still responsive. while it still responded  the device was no longer safe to use, and using it would put it and much higher risk of damage. on top of that i had no idea how much that accident damaged or didn't damage the case, and water getting into the cracks in the screen would be catastrophic/ do horrific peppermint unfixable damage. and would likely make it impossible to back up the device once i was home.

so this meant ipad had to go into the locker and i was going to have to rely on the letter board i had brought with me, i really cant stress enough how important and critical it is to always have at least one or two, if not more, low tech AAC options available as back ups,  while i had originally planned the letter board to be with me in most of the water rides, as it would be unharmed, it because my only means of communication that day. it made the day possible to continue on with, having the back up meant i was able to a lot easier recover from the suddenly destroyed aac device, and be able to enjoy my day, knowing id get my device fixed. i didnt have to sit freaking out about not having a communication method  i just needed to process the method was changed and that id be low tech for a while, until we got the device fixed or home to a laptop,. and i had to deal with the initial omg my device!!! but then it was ok i have communication access im going to be ok!

low tech supports are extremely important even when you have a full comprehensive device not only because you never know what accidents might happen but because they can just go more places to! i can go and dive with pictures and a letter board, thats a lot riskier with a device in a case, evne a good case!

i really cant stress enough

low tech AAC

low tech aac supports are critical

you need /both/ low and high tech  it should never be one or the other!

seriously always have at least 1 or two low tech AAC support as back up!

low tech AAC is just as valid and important as high tech AAC

Defining commonly used terms in the Autistic and AAC community

There are some commonly used terms in both the Autistic and AAC community. These terms tend to identify either the individuals amount or type of AAC use, such as part or full time AAC user, or their speech capabilities and support need, for example, non speaking, semi verbal, intermingantly non speaking etc...Though these are commonly used terms, they don’t tend to be really well defined anywhere and many of them are often misused. So I wanted to create a list of terms and definitions that are important that are often used, to help people know them better 

Intermittent AAC user: someone who tends to use AAC in short bursts and whose primary form of communication is vocal speech, often because AAC use is for specific situations .

Part time AAC user: individuals who rely on AAC At least some of the time. Many part time AAC users rely on AAC for 25 to 70 percent of communication needs but this is not all part time AAC users.

Full time AAC user: people who use AAC (including sounds screeches and behaviors and gestures ) for all their communication needs 

AAC as primary form of communication: people who primarily rely on AAC over vocal speech weather they are part time or full time AAC users.

AAC as secondary form of communication: someone who plan on using AAC in general even though they aren’t constantly using it and plan to use it in a variety of situations.

AAC as back up form of communication: AAC users  who use AAC as needed either in emergencies or when speech goes out or when in overload or other situations in which AAC is necessary for them to get their message across 

Multimodal Communicator: using more than one form  of AAC of method of communication, basically someone who has a range of AAC tools, and can also be someone who uses a range of AAC tools and changes between communication styles regularly or semi regularly, his can be switching between high tech to low tech then to asl then to high tech and even some times to speech for some individuals. This can include full Time AAC user, part time, intermittent ect.

Nonspeaking: not i didn't use the term non verbal because they aitistic community is purposely trying to move away from this, someone who is unable to speak, or who is minimal verbal or who's speech is unreliable 

Verbal/ speaking: anyone  whose primary (but not always only) form of communication is through vocal speech, while they are often referred to as verbal, there is some movement to change the term to speaking autistics. Verbal/Speaking autistics often rely on more than one mode of communication including intermittent, part time AAC use 

Semi-verbal: Individuals who have speech that may be unclear to others or have a limited speaking abilities that come with extreme difficulty,

Intermittently non speaking: anyone who primarily rely on vocal speech but whose speech is unreliable, and can often stop working partially or entirely for short to long periods of time unpredictably. Though some individuals can predict sometimes when this will happen, but it is not consistently predictable. 

Intermittently speaking:  anyone who is primarily non speaking but can have some use of speech from time to time. This is often with great effort and vastly unreliable and unpredictable. 

*Note* the last two terms may appear very similar at first glance but the order is really important and 

These term can be used in many combinations but but can also stand alone and it alll depends on individual preferences . For example someone might say they are an intermittently nonspeaking, part time AAC user, or they might just say they are a part time AAC use,. At the same some will only idefy with how much they use AAC, while others with how much they use speech. And as said above many will mix and match as fits both them and context of the situation. At the end it’s up to the individual to decide which term they use for themselves and which they identify with, and I hope this gives at least a bit of a baseline for knowing and understanding these commonly used term.

if you want to improve the lives of autistics, we need to make the world communication accessible

All to often I hear how parents want to improve the world for their children, how they want to make their autistic kids lives better and easier, fretting over their future and independence but, here’s the thing If you want to improve the lives of Autistics everywhere and make the world more accessible for us then you need to start with communication access and building a communication accessible world, also improving sensory accessibility is critical and just as critically vital and important, but for right now I’m going to focus on communication. Right now everything in society is built around accommodating and improving the lives of people who use mouth words to communicate! All the cool high tech things are all based on being voice activated, and society as a whole is built around speech. while the new tech is impressive the vocal speech geared focus needs to change and a shift needs to be made to also encompass features and communication options for non speakers, Even from early childhood the entire focus is on obtaining spoken vocal speech in lu of other communication support, this is not only counter productive, as providing AAC and communication supports has repeatedly proven, in multiple studies to aid in vocal speech development in children who will eventually develop speech, but it is out right cruel harmful and detrimental to the child mental physical psychological health, as well as directly harms their development and well being. This needs to change. AAC needs to start early as possible and needs to be accessible at all times, moreover we need to change the world to help all non speakers flourish and thrive and have equal. We need to build a non speaking accessible world!  

So how can we do this? What can you change right now to improve communication access? How can we as a society change our shift to communication access for autistics and everyone? Below are some basic ideas and far from all of them! 

We must first start with communication access being seen as a basic right everyone has! And we need to shift how we approach Autism in early childhood, the primary focus for parents in an autistic child’s early childhood should focus on finding, seeking out, providing, teaching and modeling communication supports and options that work for their child! AAC should be started as early as possible, it should be tabo to wait till 3 to start working on finding the right communication and as early as 26 months or earlier should be seen as common sense time to start with AAC for a child. Having backup supports even for people with decent to excellent speech should be considered a default common sense thing to do and failing to seek out AAC or taking away or removing AAC from anyone should be seen as horrifying and repulsive as taping someone’s mouth shut and binding their hands or other horrible graphic things! It is never ok to take away AAC even if all the person says is random sounds with it! 

Next let’s address things like apps and businesses 

Apps and devices

Phones and and apps have developed a lot of really cool and neat features for the speaking community! Bixby, ok google, and echo are all really really cool but we need businesses to focus on making neat features that are awesome for non speakers as well. We need ways to access these things that don’t rely on mouth words there are many access ways that would be great to do this!

Eyes gaze and head movements , give us access with our eyes! Getting eyegaze or head tracking would be huge! Not only will this make devices accessible for people who flatout need eyegaze or head tracking it would also open up a hands free option who are less likely to those of us, like the autistic community who be considered for it and for non speakers in general! This would open up a world of hands free accessibility to our phones and devices!

Gestures: on the same idea as head tracking and eyegaze It could be more customizable to have a certain movement or wave mean x or y, nd on the theme of gestures...

Asl tech for bixby echo ok google alexia ect! Training these Siri, bixby, eco, ok Google ect.. to read asl would also be huge and would again give yet another method for not only non speakers but also the deaf community to use and enjoy these services and features!

Having the ability to train it to recognizing certain sounds means to activate certain things would also be really useful tool for some of us?

Type to Siri, bixby each ect, while Siri and ok google already seem to have the type to option bixyby and Alexa still seems to need to add it and I don’t know how you’d type to echo, but this is a good and worthwhile feature that should be added, it doesn’t give us the same hands free capabilities as the other options but it should be easy enough to set up and gives accessibility.

Recognizing AAC, finally improvements allowing these products ability to recognize and reply to AAC voices reliably would be huge for many of use! 

Schools, schools need to work on normalizing and integrating AAC and communication supports (and reading supports) there needs to be visual schedules, PECs and all students should be given letter boards regardless of their speech and communication styles,  

I shouldn’t need to say this but schools also need to provide books materials and all their signs (yes every random ones you hang you word word of the day) in Braille!

Another really big and important thing schools could do to implement and support communication access and help AAC users is to provide in class, in school AAC to all the students! Yes that’s right you heard me, I want schools to provide devices loaded with high tech comprehensive AAC apps like proloquo2go, lamp, speak for yourself , and cough drop to /all/ their students, and for them to teach students early both how to use them, support and validate every students use of them, allow students to switch between speaking and using AAC and to teach both picture sentences and typing to speak! And I want these devices accessible at all times to all the students, yes I realize this is expensive and will be seen as radical, but for once I want to level the communication field I want to normalize AAC, I want to normalize shifting between using AAC and speaking and going back to AAC, i want nonspeaking kids to see their peers use this too, we need to start early building a culture of communication support and acceptance. 

Community/ Businesses 

Picture menus picture menus would be Huge in not only helping me figure out what the food options are but in quickly selecting what I want. Picture card menus would also be useful esepcailly places such as coffee shops and having things like placeMats and counter Matt’s with a letter board and some images for things like "yes" "no," " something else,". "Thank you,". "I have an allergy,". Ect would be amazingly helpful 

Auditory based menus, in addition to picture menus it would be good to have some ability to click on the the menu option or photo and have it read out loud to you, especially to read the ingredients, don’t assume because someone is non speaking and uses AAC or types or uses a letter board to speak that they are good at reading. plenty of us also have other co occurring disabilities, I often struggle in new restaurants due to my reading disabilities and have people I’m with either read to me or I order based on their food choices, so having a way to have the menu be able to read to you would be huge. 

On that note I never see Braille menus this needs to change I don’t use Braille but come on! If we are building a communication accessible world you need to offer all your materials with the option of Braille 

Menu app idea: Really an app which picture menu that will not only read to you what the items are and what’s in them but all lets you select what you want, and say " I would like a steak tips rare, "no pepper ," and also have a section for allergies and having some way to send the info directly to a device with the meal ticket for the waitress would be huge! 

Cognitively accessible resources and materials, I shouldn’t have to point this out but it needs to be said,everything, i mean everything all materials should come with cognitively accessible options, from menus, to news papers, to forms, to things like loan and insurance information, I mean let’s be real here for a moment, Loand and insurance information should legally be required to have extra cognitively accessible versions of their information that doesn’t hide facts. And literally everyone would benefit from that, non disabled people with no cognitive or neurological impairments would probably be in shock at how much more understandable things are and way happier and life would be much easier. 

Events And meetups ect,

 this is where you need to pull it all together you need to consider location, you need to provide cognitively accessible materials, for any sort of event you are planning be it an acceptance, pride day, a march a protest or a seminar, you need to consider AAC users. Sending out materials a week or so ahead of time for "this is what you can expect, " is really important, in those materials you should also include things like any scripts AAC users may need to program in pro our devices 

Location: When it comes to planning a location accessibility can be hard keeping AAC users in mind for these is really important it is really hard for us to be heard in really loud environments so if you are wanting to do a disability based meetup or event choosing a place with good sound insulation that isn’t too loud is really important, places like bars and pubs are not generally easy to be heard in, not to mention generally sensory unfriendly in general. Also consider lighting, things like will the sun glare out AAC device screens? Is there shade? Is there a place for people with high tech devices to plug in or place their devices for typing?

 Teleconferencing And telecommuting and online meetings: all to often there Re events that’s are either far away or multiply in cessions and often both, telecommuting needs to be made standard for events and meeting, I know it can be hard to have a sit down meeting and have one AAC user compute in via video but there are ways to make this work, from having the video up and having a chat screen that people actually pay attention to, or even just having one person reliably read the chat screen, to having a text to speech program read the screen, even basic things like having a loud enough speaker so their AAC voice can be clearly heard over it and giving them space and time to participate even while telecommuting panelists also needs to have the ability to telecommute to events as well.There are a lot of events which should be easy enough to set up with a projector system. This would make many more meetings more accessible to not only non speakers but people with multiple disabilities and in lower income bracket who can not easily travel or attend event or who have a lot of barriers to accessibility and want to attend but don’t have the spoons to manage the crowds, travel, money, overload barriers ect. ( this should used as an option you make available so you don't have to put all the effort into making your event as accessible as you possibly can, it should only be added as an additional option in addition to all the other things you need to do to make your event as accessible as possible, You do not get to offer telecommuting and skimp kn accessibility)

Basic AAC training, all staff working or volunteering at events, seminars ect (also you know teachers, doctors social workers therapist, people in the psychiatric field, emergency responder, specialists ect) should have some basic 101 of AAC training, it doesn't have to be complicated it can be simple like wait for the person to respond, don’t ask a million questions at once, make sure the person is in a state they can answer you before asking things, simple things like that. also some training on the challenges AAC users face would be useful 

Equipment when having an AAC panelist it is really important to consider their needs in planning equipment, for example a mic doesn’t usually work well with a speaker but having a cord or some way to connect to the sound system would make a huge difference, charging stations are also critical to have in plenty of AAC users its a good idea to have several extension cords out and plugged in for AAC users to make use it throughout your events.

Food 

Yes this is actually a communication thing food at events and everywhere needs clear labeling, we need a clear way to communicate about food choices and ask questions, it is also critical that all food at events and otherwise clearly list ingredient and possible allergies , ideally with pictures along side staff in charge of food need to be trained in AAC, asl and also know what is in the food and what allergics are in the food.

Hospitals and medical staff and doctors appointments 

This is another area where communication supports need to be integrated, both in general visits, emergancy rooms, truama wards, maturnity wards, pediatric wards and psychiatric wards all need extensive aac taining and full AAC intergration! we need more than on a scale of 1 to 10 charts. Every doctors office and hospital should have communication boards and letter boards as well as picture cards to aid in communication, another thing doctors and medical staff need to have available is coloring pages for showing where and how pain is for both the whole body and every part of the body. Doctors also need to learn to ask direct questions, provide printed material (or email it) of summaries instructions ect (agin cognitively accessible are we sensing a theme yet?) Doctors need to have a way to communicate with patients outside of appointments like email or text and not phones. Also when scheduling doctors need to schedule twice the time for AAC users, non speakers and people with communication disorders. Clear examples are also important, and to explain what sort of things are important for them to know with examples. Also having non speech based info of these and visuals is also important as options.

Finally You should have staff who are multilingual someone working who is bilingual on each shift (different employees don't over work your interpetert and one or two multilingual employees) and at least one person fluent in ASL and again all materials should be cognitively accessible, multilingual, in braille 

These are the very bare minimum, this is just the start of what we need to do to start building a Non Speak accessible world, there's a lot that needs changing some will be easy and you can do right now! Others will require larger cultural shifts but we need to start changing these thing now! If you want to improve the lives of Autistics and make this world more accessible to us you need to make accessible fi

For non speaker, you need to normalize communication supports and you need to prioritize providing us with those supports and teaching them to us in ways that work for us so we can have out voices heard!

Eye-Gaze AAC for Autistics

This is a topic I have been passionate about for some time now, though I have posted about it elsewhere, it’s time I make an official post here, I maybe be the first to dis

 Ok so aac is kind huge for me, I absolutely love aac and specifically my AAC, recently I was introduced to An aac device that had something called eye gaze which you can use your eyes to select and speak things! I was almost immediately inlove!

This is typically for people with little to no motor control in their hands and fingers but to me it opened up a whole new idea world of overcoming some of the brain body disconnect that comes with being autistic, especially on my especially on days where I'm having a really hard time with coordination, during shutdowns, post meltdowns and post seizures when this tends to be a lot worse, you could also type to speak too or use your eyes that's was the best part! It was either!

I keep thinking about it and wishing proloquo2go offered eyegaze and how much it could really help other autistics who have more of a brain body disconnect than I do also access aac as well or and this could really help out those who use FC and maybe useful for people using FC to try and be able to have access to addition option with FC for those who use it!
*this is not meant to be a replacement for FC and will not work for all FC users but could provide second communication option for some individuals using FC*

We really do need smaller more portable and more accurate eyegaze based aac systems, and or for dynavox to make a eyegaze passed switch/control like the PCEye go. That is comparable with the iPad and ideally bluetooth connected so we can keep our devices safe in waterproof cases but still utilize the eyetracker, additionally smaller tobbi I-12 type series of dedicated speech devices that are more portable for autistics would also be ideal

Unfortunately eyegaze isn’t really even ever considered an option or priority for autistics, I suspect this is largely because the brain body disconnect many of us experience, especially those of us who are intermittently verbal to non speaking /part time to full time aac users) experience is often not well known and not much discussed outside the autiatisticcomminuty. It’s not even something most clinictions are much aware of or really understand in my experience so it comes as little surprise to me that the major manufacturers of eyegaze aac tech would not be marketing to the autistic community, which is a huge loss for us.
Eyegaze isn’t perfect, and it does have its down side of coarse it it is tiring, expensive, hard to get approval for right now and currently most no one knows about its massive benefit and need in the autistic community! The modern AAC tech, while much improved also still needs to be made smaller and more portable S well as more accurate from slightly off angles, but I think it could still believe eyegaze AAC could make a world of difference for many other autistics as well! I think it would be huge if more nonspeaking autistics could have eyegaze as an option!. Eyegaze needs to be made available to the autistic community.

You are failing Autistics when you don’t prioritize AAC

This is going to be short to get me into the swing of blogging again,
lately I have noticed a very upsetting pattern parents of autistic, in many cases non speaking autistic children don’t know what AAC is,
This is not ok!

This concerns me greatly! I suspect more often than not it is because “specialists,” hold off on mentioning it and or introducing it in hopes of pushing for mouth words, all to often we know that specialists will tell families to wait on aac, even though studies have shown aac help build languages and communication skills!

Here is the thing I’m going to lay it out short and sweet,


AAC need to be the first step!

Communication is a basic human right!

Your first step must be Providing Access to communication

 If it's not then you are failing Autistics!


Right after diagnosis a child should immediately start the process of finding communication supports that help them and work for them as well as at least 2back ups! This needs to be the primary goal of any or all autism based services, to provide access to communication, also sensory supports,

 I really can’t stress enough how critical aac services are!

If your goal is to teach the autistic to stop stimming you are failing autistics!

If your goal of to teach them to be indistinguishable from peers your failing autistics!

If your first and primary goal is not providing the autistic client with access to as much communication as possible then you are failing your Autistics! If you are a service provider you are failing your Autistic clients!

these services need to also include teaching presumption of competence to family and all other support staff working with the autistic individual as well, and lessons on the importance of respecting their disabled child’s rights and dignity!

Yes you are failing Autistics when you do not prioritize AAC and access to communication!

AAC needs to come first!

this is going to be short to get me into the swing of blogging again,
lately I have noticed a very upsetting pattern parents of autistic, in many cases non speaking autistic children don’t know what AAC is,

This is not ok!

This concerns me greatly! I suspect more often than not it is because “specialists,” hold off on mentioning it and or introducing it in hopes of pushing for mouth words, all to often we know that specialists will tell families to wait on aac, even though studies have shown aac help build languages and communication skills!


Here is the thing I’m going to lay it out short and sweet, AAC need to be the first step!

Right after diagnosis a child should immediately start the process of finding communication supports that help them and work for them as well as at least 2back ups! This needs to be the primary goal of any or all autism based services, to provide access to communication, also sensory supports, But I really can’t stress enough how critical aac services are!

Part of these services need to include teaching presumption of competence to family and all other support staff working with the autistic individual as well, and lessons on the importance of respecting their disabled child’s rights and dignity!

If your goal is to teach the client to stop stimming you are failing autistic clients

If your goal of to teach them to be indistinguishable from peers your failing autistic client

If your first and primary goal is not providing the autistic client with access to as much communication as possible then you are failing your autistic clients!

We Need To Stop Treating AAC Like A Last ditch Option and so much more!

Im going to keep this short, I’m tired and low on spoons I have been for a while now, I mean low on spoons  but I wanted to get something out for Autistic speaking day.

We need to stop treating AAC like a last ditch option, so often I see parents waiting till their kids ore older to try AAC, they are told to try for speech  they believe that if they go straight to AAC that they will loose the opportunity for speech, but the science just isn’t behind this! Study after study has proven that if anything AAC helps promote speech  but more importantly they are loosing valuable time and spending years denying their kids access to communication methods in fear of not getting for mouth words. This isn’t just against the since it’s massively cruel, providing and teaching communication to your child should take priority over all else.  Not all of us will gain mouth words and that’s ok but it is critical you do everything to help us access methods of communication that work for us!

We need to do away with the idea of prove it low tech first this is archaic and BS  just google "everything wrong with prove it low tech first"and that should give you plenty of blogs with explanations.

Introducing comprehensive AAC early and modeling is critical

We need to start treating AAC like a language and we need to start valuing AAC as much as we do as mouth words!

We need to recognize that AAC access is important and critical for many individuals with a variety of persevered verbal abilities. i say perceived as all to often what you see is not all that we are trying to say or express but often we cant get all the right mouth words, or the wrong ones come out, or they wont come out at all even when we know exactly what we want to say.

there are many Autistic (and Im sure NTs) who can speak well or even exceedingly well but loose speech and need AAC part time. their need is no less real than someone who has never spoke a word.
some individuals need AAC to help them hold and process thoughts as they type them out so they can communicate clearly. Their need for access to AAC is real!

Some Autiscs have an easier time typing or using symbols than mouth word their need for AAC is real

Autistics  who ha intermittent speech, their need for AAC is rel

the autistic who has ne'ever spoke a words need for AAC is real

Autistics that type and speak the words as they types need for AAC is real

baseline if someone expresses and interest in AAC no matter how old or how verbal their need and right to have access to AAC is real and valid

we need to change the conversation around AAC, from something tabo to just another way some individual communicate.

lastly it is acceptable and we need to normalize switching between multiple modes of communication  be it

AAC-> sign-> sounds->pecs
0r
verbal speech-> AAC->sounds
or verbal speech-.sign
or
sign->AAC-> sounds ->letter board
or
letter board->verbal speech->pecs

and so on most any combination you can think of every individual has needs to be allowed their right to switch through ( yes even you)