Saturday, July 30, 2022

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/




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Monday, November 1, 2021

Autistic Speaking Day:AAC, Paganism, faith and communication access

 Trigger warning/caution notice, this post discusses religion, ancestors, food, pagan and holidays

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It is just after Halloween, and for many people this is a one day holiday, for me those who don't know I am pagan and for me Halloween more of a day I mark in or as part of my Samhain, which is a larger Holiday period? festival? I'm not sure the right word for it,  Samhain (pronounce sow-in)  is one the the 4 fire festivals in Irish paganism, I am not going to give a long i depth lesson on Samhain or a history lesson, I highly recommend learning about it from actual Irish people, aka people from and living in Ireland who are part of the living culture there.  I would also recommend looking at things like blog posts and videos by native sources, I would recommend checking out writings and videos  by Lora O'brien as a starting off point or as well as out dúchas.ie, and for Irish paganism specifically there is the Irish Pagan Scool. These are all good native sources I recomend for starting your own research into Samhain and Irish paganism.links provided below.


 there is a lot when we are celebrating Samhain. From larger family discussions Ancestor work, deity work, studying, Divination,meditations, cleaning, meal prep and cooking, silent suppers, turnip carving, planing out company, putting out offerings and so on,


Before during and around Samhain there is a lot of discussion around what things we want to keep or get rid of,what is working and what isn't, both for things like do we really need all these papers, to do we need a better system of organizing, how can we organize better, to even more complicated family and relationship talks, discussing what things we want to keep and build on for the next year, anything we want to add for the coming year, this could be as simple as “do we want to get a new stuffed animals too do we want to consider expanding the family in some say ie, pets, babies, partners, found family etc. also a lot of discussing lighter things like decoration, a lot of discussion around foods and cooking, setting up altars, Divination (such as tarot cards pendulum,a few Divination “games,” I don't know names for), costumes a well as things like games.carving turnips, plans for guests and so on. And this is all for just one of the major holidays!


 These are all things I need to be able to plan and discuss with people who are around me or who will be doing any of these things with Me. However the words I need for this aren't in any of my AAC system base vocabulary sets. This means I have been also working on building up and editing my AAC boards to be able to talk about, discuss, participate and fully communicate during these holidays as well as to discuss my own faith and practices.


This is because the majority of AAC systems are Christian heavy, what I mean by this is whenever you get an AAC app or device, once you are all set up and you load you starting vocabulary, if you have a folder or a place for words in and around religeon they are almost certainly going to be nearly if not all Christian based, if you are lucky you might have the word “Judaism and “Islam”  and /maybe/ 1 or 2 other religeon and possibly 1 or 2 items from said religeon,  but it will be filled tpwuth things for Christians, when it comes holidays will be find almost all if not all the Christian and likely regional holidays, but you are unlikely to find words for any other religeon holidays, 


While I am very happy Christians have a solid base set for discussing their faith, holidays, deities and religion, more AAC systems need to to be inclusive of other faiths and religeons, I. Don't expect most to include things like paganism, as that is such a broad, paganism is just extremely broad with so so many paths, many pagans aren't on the same path I am, though having a few basic words might be nice, but I guess hard to agree on, however the holidays and more words for at least the top 6-8 religions seems like a basic low bar for AAC and communication access,  it requires actually including people from those communities at the table when designing vocabulary sets, making sure they are included but again that seems pretty important and should be set as the baseline. 


It's really important for people to have words to discuss their faith and for many it's and intrical part of their  own culture and daily life, and they need access to these words, additionally they will want to talk to friends who may not be in the faith about things they are doing, maybe invite people to their event or so on.  It's important for others not in those communities to have word to interact with family and friends of different faiths. To see and have words for discussing with thier Jewish, Skih, Hindu, Muslim, buhdist,Christian etc  friends family. And again everyone should get to have words for their holidays and for their faith and their culture in their communication system, it shouldn't have to be hours to months of extra work just to add even the basics, not to mention having to put in all the work to come up with images for anyone using a symbols Set.!



This for me when it comes to paganism this  has meant I have had  to do a lot of editing and rearranging and figuring out where to put words, and how to organize not just holiday, but also tools and aspect of my own faith  beliefs and practices, and I need to make these fit within the lay out of my system, I also need to keep the common mainstream and Christian holidays, after all, the majority of people celebrate them, even I celebrate most of them, things like Christmas and Easter with my non pagan family, and we also do Christmas in addition to solstice here because why not? as I have said, I have family who celebrate it, and also need to keep most of the national and regional holidays too.  (Though some have been removed or changed,) I will still need and want to discuss common mainstream ones with our Christian family members, but I also want to be able to discuss things within our Pagan multi religious household.


When it comes to editing my AAC for my own faith and holidays There is far more than  just Samhain I need to add ford's for, after all there are other festivals and daily workings too,  each one needs careful thought and consideration, and as I learn more or as my practice grows and as things in my life change will need to continues to edit and adjust my words and vocabulary. it's a lot of work, I am nowhere near finished. I will likely never truly be fully finished however, It is important work,  so it is work that I must do, one day, maybe I will pass on these vocab sets to others who want and need it.


Dúchas.ie

Irish Pagan school: https://irishpaganschool.com/courses/

Lora O'Brien log  https://loraobrien.ie

Lora O'Brien youtubehttps://youtube.com/c/LoraOBrienIRL

Tuesday, July 27, 2021

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)



Friday, April 2, 2021

So it's Autism Acceptance day

 tw discussion of illness. And the oandemic

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.so it's Autism acceptance day again 

 I'll spend the day wearing red and dressing up nights, if I'm luck and have the spoons do a light or moderate cleaning and hang some multicolored lights,  this year any other activities will be online on account of the pandemic, I totally missed opall of last year's autism month die to being too sick my self to even remember it never mind put in spoons,  Don't worry it wasn't covid probably, most likely it was a pretty hash flu, still nine site less  even had I been well things would have been similar to how they will be this year at home and online.  

Which will consist mostly of reminding people to center Autistic voices, read post by autistics, support Autistic creators and support autistic lead organizations  so I'm taking time to do that here too. 

If you want to donate to an organization this month 


 Autistic People of color fund 

https://autismandrace.com/autistic-people-of-color-fund/

Foundation for divergent minds

https://www.divergentminds.org/


Autistic woman and non binary network

https://awnnetwork.org/


Communication first 

https://communicationfirst.org/



Autistic typing has put together a great list of black and indigenous/ POC, Latina. Latnx Autistics Advocates  i highly recomend you check out and follow! 


https://www.facebook.com/371675056766232/posts/455214035079000/


Additionally 


Blogs
here is a list of blogs by so actually Autistic authors read them and share


https://ballastexistenz.wordpress.com


http://nonspeakingautisticspeaking.blogspot.com/


http://autisticacademic.com


http://www.autistichoya.com


https://anotherqueerautistic.wordpress.com/


http://turtleisaverb.blogspot.com


https://www.facebook.com/NeurodivergenciaLatina/


http://www.halo-soma.org/about_writings.php


http://timetolisten.blogspot.com


http://whoneedsnormalcy.blogspot.com


http://ollibean.com


http://realsocialskills.org


https://unstrangemind.wordpress.com


https://juststimming.wordpress.com


http://yesthattoo.blogspot.com


http://idoinautismland.com



http://l.facebook.com/l.php?typing4change.com



https://www.facebook.com/stringsinvisible/



https://www.facebook.com/AutisticTyping


https://www.facebook.com/blackautist/


https://www.facebook.com/angryasianandautistic


https://www.tiktok.com/@auteach?lang=en


https://www.facebook.com/Quirky.Stimmy.Cool/

 


https://neurowonderful.tumblr.com/



https://www.youtube.com/neurowonderful



https://www.facebook.com/autisticonwheels


https://www.whoneedsnormalcy.com/


http://morenikego.com/writing/blog/


https://www.facebook.com/echolaliachamber/


https://www.facebook.com/hazelwoodconsulting/


https://www.facebook.com/HelloMichelleSwan/


https://www.facebook.com/neurodefiant/


https://www.facebook.com/AutisticCaptioner/



https://www.facebook.com/neurodivecast/


https://www.facebook.com/AutisticOctopus


 

https://www.facebook.com/EdWileyAutismAcceptance


 

http://autistictimestwo.blogspot.com


 


http://www.determinedarrow.com/


 

 

https://www.facebook.com/WeAreLikeYourChild/



https://www.instagram.com/the.autisticats/

 


https://www.facebook.com/theNTwife/


https://www.facebook.com/autisticpartygiraffe


https://neurocosmopolitanism.com/



https://www.facebook.com/CMR21



https://www.facebook.com/rhemashope



https://www.facebook.com/conquerforconner




Thursday, December 26, 2019

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!

Friday, November 1, 2019

There is more to speaking than Vocal Oral speech

there is so much value put on oral vocal speech, (mouth words) that people not only overlook but also devalue any other method of communication,  This has lead to hundreds of thousands of people being denied communication access, or forced to wait years before anyone tried to start to find a method of communication that worked for them, spending years fighting to have their voice heard, and having their other forms of communication often looked at as problematic behaviors, or over reactions.  it has also lead to people who could benefit from AAC but have any speech at all denied access because well they have speech so they  "shouldn't use AAC because they "dont need it,""  which of coarse is both wrong and often comes both from people around them but is often instilled as an internal message. yet when they do use AAC they find they communicate better, areas they struggle to communicate they can and an over all improvement in things

we act like vocal oral speech is the most important thing  you always hear about first mouth words, parents crying because they got called mommy or heard i love you for the first time, but i basically never see other forms of communication treated the same way ever!  you dont hear parents jumping for joy over first picture card, or first words on high tech apps, or first spelled words or sentence,  you rarely see the same admiration for this form of communication because people dont count AAC and non vocal speech as having the same importance or value and this needs to change!! all to often people hold off aac they deny it because to them vocal speech matters more, they cant see it as equal to other forms of communication, we need to change this! we need to make it clear all the other methods of communication have so so so much value and they are just as real and rich and beautiful and important as vocal oral speech,  We show that communication and communication access matters so much more than weather or not it comes from oral speech! We need the world to value all forms of communication equally and we cant do that until we start treating them equally. we need to push for building a communication accessible word with diffrent communication method options everywhere, we need to push for our tech to also be made accessible for all communication styles not just built around those who use mouth words!

 and there are so so so many different ways other than oral vocal speech to communicate many are even normalized, (like this blog your reading now this is normalized aac)  but there are so many more  just to name a few 


  • body language and "behavior" ie what people generally call expressing emotions
  • sign language
  • letter board
  • PECS (picture exchange communication) 
  • PODD book
  • Paper and pencil 
  • Symbol boards 
  • Objects used for communication 
  • Pictures 
  • Dedicated devices like a Dynavox  
  • Eye Gaze based AAC devices 
  • iPads, tablets and phones with full comprehensive AAC apps 

some of the normalized forms of speaking are,

  • letters
  • passing notes
  • texting
  • email
  • chatrooms
  • blog
  • IRC
  • twitter
  • instagram
  • snapchat
  • vine
  • tik tok
  • and other social media and online forms of communication

with all these different forms of communications we need to stop acting like vocal speech is the most important thing ever!we need to fight for and build a communication accessible world! we need to normalize switching between various forms of communication we need to stop fearing a life with out mouth words!