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!
Thursday, December 26, 2019
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!
it is Autistic speaking day and I am tired.
Today is Autistic Speaking day, 11:23pm at the start of writting this post, and I am tired, not, in fact because it is so late. though im sure that plays some part, I am always pretty tired on Nov 1st being the day after Samhain, which is a major event in which i spend weeks pour all my spoons, So i rarely have many spoons to put into posting a good post. or figure out what to talk about, i could discuss the need for better cases, the greater need for over all aac access and tools in public places, the need for teaching emotions better with AAC i could go on and on about the need for more representation of AAC users with in the AAC community but i think i want to talk about 2 things maybe 3 and by talk about them i think for tonight i mean mention them with plans to flush them out more later if i remember two.
the first is something that i see all the time all year, and that is the need foir earlier introductipon to AAC and more public knowledge of what AAC even is, it happens at least 6 times or more a month a parent mentions in a group im in their child is speech delayed, has unreliable speech or is entirely non speaking., and I ask if they have started AAC yet. 9 out of 10 times i get a no and on a rare occasion i get "we tried they were not interested," (which sounding like the parent had given up ion AAC all together i try to find a way to encourage them to not give up because its so so critical to never give up) all to often even with kids ages as old as 9, 10 and 15 i have met parents who have never heard of AAC, or who have bee discouraged from AAC or told to wait or want to wait, we need to change this! we need to start making AAC a first priority, communication aacess and sensory supports should be a top priority.
the other topic i want to discuss is the critical need for more AAC user representation, I remember when speechless came out i was inlive because JJ was a real AAC user, and he was a real person treated like a real person, not some plot device or a thing to motivate the speaking non disabled people in the show. there was so much that meant to me. but that was only one show, and yeah it was far from perfect but a huge step. Here is the thing though AAC acceptance month just wrapped up and still the majority of the voices in that seem to be parents SLPs and AAC orgs, all important voices but we need to shift to making the primaryh voices of AAC thing AAC users themselves! all AAC programs should highlight users and make 98% of their surveys and work around AAC user feed back, with SLPs parents and teachers and app staff being second,
third we need a lot more resources for adults starting out with using AAC, all the resources are geared toward kids, and we need resources for helping kids but we need ones for adults just starting out with AAC for whatever reason they are using AAC. Now when I say rresources geared towards adults i dont mean you need to make them boring, we like to have fun too! we like music and games and books ect! but even changing wording for modeling for kids, to activities you can do to work on aac and ways to get to know your device! fun games! ect
anyways sorry this is worded a mess im tired and this is chunky and such but i did want to get something out on Autistic speaking day
the first is something that i see all the time all year, and that is the need foir earlier introductipon to AAC and more public knowledge of what AAC even is, it happens at least 6 times or more a month a parent mentions in a group im in their child is speech delayed, has unreliable speech or is entirely non speaking., and I ask if they have started AAC yet. 9 out of 10 times i get a no and on a rare occasion i get "we tried they were not interested," (which sounding like the parent had given up ion AAC all together i try to find a way to encourage them to not give up because its so so critical to never give up) all to often even with kids ages as old as 9, 10 and 15 i have met parents who have never heard of AAC, or who have bee discouraged from AAC or told to wait or want to wait, we need to change this! we need to start making AAC a first priority, communication aacess and sensory supports should be a top priority.
the other topic i want to discuss is the critical need for more AAC user representation, I remember when speechless came out i was inlive because JJ was a real AAC user, and he was a real person treated like a real person, not some plot device or a thing to motivate the speaking non disabled people in the show. there was so much that meant to me. but that was only one show, and yeah it was far from perfect but a huge step. Here is the thing though AAC acceptance month just wrapped up and still the majority of the voices in that seem to be parents SLPs and AAC orgs, all important voices but we need to shift to making the primaryh voices of AAC thing AAC users themselves! all AAC programs should highlight users and make 98% of their surveys and work around AAC user feed back, with SLPs parents and teachers and app staff being second,
third we need a lot more resources for adults starting out with using AAC, all the resources are geared toward kids, and we need resources for helping kids but we need ones for adults just starting out with AAC for whatever reason they are using AAC. Now when I say rresources geared towards adults i dont mean you need to make them boring, we like to have fun too! we like music and games and books ect! but even changing wording for modeling for kids, to activities you can do to work on aac and ways to get to know your device! fun games! ect
anyways sorry this is worded a mess im tired and this is chunky and such but i did want to get something out on Autistic speaking day
Thursday, September 12, 2019
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!
Thursday, August 1, 2019
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
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
Monday, April 29, 2019
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.
Monday, April 1, 2019
Why is no one making waterproof cases anymore?
Recwntly i have been able to manage to upgrade my AAC device to a brand new ipad pro 11 inch! Intially i wasn super excited! I couldnt wait to get a new case and use my new device! Well that hit a few hurdles. It turns lutthere were very few quality drop proof cases and no water proof cases at all when i first got it. I wasnt too suprised at first given the 11 inch is a pretty new ipad, but givenwater proof cases are a muat formy basicbeeds asan AAC user this meant using my older ipad which had a water proof case as my main aac and only using the new device in home until i could get a water proof case. It has been several months and so far i have only found one water proof case for this ipad, no other companies seem to be making any water proof cases for the newer ipad models at all! Whas more my go to brand life proof which is known for their water proof cases does not appear to have any olans to make cases for the newer models!
I did end up getting that one casw and i was so so excited i was checking the mail every day, thinking it would be even better than life proof! Only to get the case and be massive,y disapointed as i can barely tyoe with the case on which is a major flaw, also the back peels off suoer easy, the screen protector messes up ohoto quality and it also messes up speaker sound a bit, italso feels a bit sharp on the edges. all of which are really disapointing cause i honestly want to love this case so much! Thiswas a case i hadbeen hoping for ll thise flaws! it has features like back mounting abilities i had longed for! i plan to contact the company and see what can be done! Because i believe they can do better!
Why has everyone stopped making waterproof cases? These cases are a life line for so many of us! We need good drop proof water proof cases!
The diffrence between havinga goodwater proof case and not having one is the diffrence between a 500 to thousand dollar piece of assitive tech not being ruined when caugh out in the rain, being able to keep your communication device by the pool or at the beach wkthput fear oreven inor nearthebath orshower! Itmatters because waterproofing at ipx67 to ipx68 isorivides more access to communication in all enviorments!
And this doesnt just benefit aac users and the disabled community it also benefits the general public too! People love to read tablets pool side or work on the beach or by the pool, and lets be honest anyone can get caught outin the rain so really water proof cases benefit litterally everyone! I used to believe waterproof cases should be the minimal standard for a case because of this even! We need more companies making them and swlling them! So wny arent they?
Monday, March 25, 2019
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.
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!
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!
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!
You need to stop assuming!
You need to stop assuming i"m independent, well off, mildly affected have the easy form of autism "high functioning " or whatever else you want to call it! Just because I post and advocate on the Internet! And STOP Shaming autistics who do have independence or a milder form of Autism! Stop using it to take away their voices!
I am going to be straight forward here and honest As I don't like posting about my challenges on social media, I like to keep them private this in no way means I don't have them! Yet somehow people assume I dont. Here is the thing I don't fit neatly into your little box and most Autistics don't!
All too often people see I write blogs, they see I use social media, that I'm trying to get a bachelors degree and I am engaged and they use this to make assumptions about me and decide I am to mild to have significant impairments from my autism, they assume I am not severe enough and so my opinions dont matter, what you don't realize is my fiance is also disabled has ADHD and likely Autistic too, I am going to school because that's what my transition plan was and that's what I know how to do, I have been doing it all my life, if I get my degree I have no idea what I will do after that, so let's out this all out on the table then once and for all!
The truth is......I'm actually pretty damn disabled
Driving-NOPE
First off I can't drive a combination of sensory issue, trouble focusing, delayed reflexes make this something I just flat out cannot do!
Face? "Who are you?....oh right your my parent"
I can't recognize faces out of context, not even my own mother! I have to use other ways of identifying people! I use hair, clothing, context and smell. So in class I can recognize my teacher but if she cut her hair I wouldnt know who she was and would panic when she started class because I would see her as someone else and I would walk out and franticly try to figure out what day it was, was i in the right building? Was class canceled? Did we switch class rooms where is my class? When my fiance cuts his hair i often cry and feel uneasy around him for the next week or two, a few times I almost walked off with someone who had a similar hair cut and outfit to my mother!
ADLs/self care
In my last neuropsych performed last summer or fall on the ABASS ll I scored over all in the "extremely low range" and never received above a "borderline" in any of the categories within!" And we were being generous because the truth is most everything on their we checked off as "yes" needed a side note of "with help, supervision and prompting" there are many things I can do I have learned to do I don't process to do without frequent prompting from eat, brushing my teeth taking, my meds putting on *clean clothes*, to doing homework, cleaning my room and basic chores, if I don't have someone prompting me to do these things on a regular basis they generally don't happen and I will go months without brushing my teeth, weeks wearing the exact same outfit only remembering to change my under bits every few days, Even though I have and thrive and NEED routines to survive I need prompting to start them, I really heavily on a picture schedule app just to get me through my mourning routine, because just getting up and getting ready is often a confusing and overwhelming tasks, but the picture schedule only serves as an aid to help me get started. I without someone prompting me to open my picture schedule I will sit for hours confused and unsure what to do first or how to get started. Before when I had Nim this was only a bit less of an issue since she would always wake me, we had our walk together and then i would come home abd be mostly able to remember to start my picture schedule, but even this wasn't 100% think more like 40 % after Nim died, my world fell apart, and "functioning" became even more overwhelming. Nim was no longer there to signal me and opening my schedules became painful as her care took up a good 50 percent of my daily routine Without Nim I need now more than ever to have someone to prompt me to get started on those basic daily rituals. However the visual schedule isn't enough, as if something interrupts me or there is a suddenly new step or obstacle (like no clean bowls for breakfast) I will become stuck and begin pacing back and forth and unable to move onto the next thing and may become so overwhelmed with confusion i meltdown. having someone there prompting me helps me get back on track and will often help get me through meltdowns so i can rearrange and figure out an alternative, without this help remain stuck for hours, This is all simply trying to get ready for the day, but it is by no means the end of it, these issues and challenges extend throughout the day and a simple break in routine or expected plans can cause me to get stuck and become completely non functional.
Sensory issues also play another role in impairing my basic ADLS , One of the reasons tooth brushing is a major issue for me other then remembering to do it and not knowing how to do it right or how long to do it tooth paste is also an issue. Most toothpastes burn when I use them and so I must have a very specific type of tooth paste or I cannot brush my teeth. While I love showers and bath but the feel of towels on my skin after sends a horrible sensation through my body and if the towel rubs on itself i get horrible sensation in my teeth like i had bit into it that makes my body shake and can cause panic and overload, some days it is enough to cause me to shut down and break into tears until i can get my body to restart and be able to move on, this is another area where "having someone there" can make a difference between out for an hour or two and getting through it in 30 to40 minutes as they will be able to help by stitching the towel for blankets and then be able to provide a deep pressure that can help get me restarted. After showers and baths i have to be completely dry before i can put on clothes, this is less of an issue with shirts and sweat shirts for me as it is pants, putting on pants while my lower half is not yet dry will also send my system into a sensory mess, This will also cause a long lasting sensory irritant throughout most of the day while my pants and skin fully dry. Sensory Irritants are things not bad enough to cause overloads and meltdowns on their own but drastically increasing the risk of something else triggering them and that something else can be something very simple a minor and even something i may not normally be affected by. New freshly washed clothing can also cause issues as it often feels tighter to me which is another sensory irritant and they take several hours to a whole day to feel comfortable in. Sensory issues cause many impairments for me and affect many things like sleeping, eating, dressing and where I can and can't go or do and there are many of them and they are complicated. In fact sensory issues can make up their own pos entirely t so I will only use these few examples
Eating
If I have someone helping making and cooking meals for me i can mostly be okish with this but in general I am not, this is another area where I need a lot of prompting as I often do recognize when I am hungry until i'm having headaches and feeling shaky and emotional, even then if there isn't something easy to heat or just eat to I often won't eat because I can't figure out what to cook or where to start so I become over loaded and wander off and meltdown until I am exhausted and pass out or find a way to forget my hunger until the option of easy food becomes available Another common issue I have is when i am hungry but there is nothing my mouth will accept or will want to eat so i gain will wander off and not eat anything. There are a few things I can cook on my own but all to often I get overwhelmed by all the steps involved just like ith my moning routine and without someone there to prompt me i will not make more then one meal a day, though even this can be risky as i tend to forget im cooking and have left things on the burner, I find if i have premade meals or things easy to make like chicken nuggets I am a bit more likely to eat. However getting food is often so overwhelming I generally dont Eat
Other issues I face arround food is texture ,taste and swallowing. As is to be expected there are certain textures and seasonings i can't eat, my body has strong reactions to them where my throat will refuse to swallow them and no matter how hard i try i just flat out cannot eat them some examples are, many nuts, mashed potatoes, tofu and anything spicy Even when I can eat foods I like they I always need a drink as food gets stuck in my throat really easily and some foods that I like and can eat just fine may be more likely to be regurgitated (not something I can control)
Other areas I have impairments
· Brain body disconnect (this means my body doesn't fully obey my brain and causes impairments in communication, writing, ADLs and more (this will likely be its own post some day)
· Sleep
· sensory issues
· sensory processing
· understandingbody language
· Socializing
· Meltdowns and shutdowns
· Communicating
· Wandering
· processing danger in real time
· highly fixated interst
· finances and understanding money and bills
· I can't drive period
· body awareness
· facial recognition
· Executive functioning
· cooking/ cooking safely
· staying organized
· managing female issues
· and more!
the truth is I have many many challenges and impairments, many of them are things you don't see or couldn't really know about with out spending real time with me. with out spending a day ot two with me or without taking on a job as an aid or caregiver for me most, of these impairments you would remain unaware of and would not know about from talking to me online or maybe not even spending a few hours with me a week. (well depends really, more you wont see ALL of them, but like spending time with me in person where you will see me stim and talk to you through and AAC device and i stuggle with eye contact and tend to hyper-focus, but wether I was verbal or nonverbal wouldn't matter since either way you could only really see a few of my issues and could not possibly make a proper judgement on the level of my impairments and disability just by interacting with me. This holds just as true if not more so online and when reading my writings, where i have many errors in grammar and spelling you are only seeing a fraction of what i am struggling with and far far far from all of my challenges. The truth is I have come so very far in my challenges and abilities since I was little and I hard to work hard to get to where I am today years worth of OT , play and speech therapies, of doctors and specialists. thing like doing buttons on my own unless they were snap buttons didn't happen until i was 10, tying my shoes i was 14 riding a 2 wheeled bike? 14 (and that i can't do safely and end up cut up from it so i need an adaptive trike do to issues with body awareness) holding pencils and basic writing took years and years, I never did learn cursive and computers made a HUGE difference in my ability to write to express myself! Yet all to often because I speak of a need for acceptance or i speak out against autism speaks and can write online and express myself on the internet I am told i am to high functioning to know what real autism is like and people assume I have no real challenges or significant disability,What they don't realize when they assume this is I do have many very real challenges and I have worked very hard to achieve the things and accomplishments I have
I am not alone in this, this has happened to all of my fellow Autistics, This is a practice a few Autistic friends and parent Advocates and I coined the phrase for called functioning shaming definition below. This is something that is very harmful and damaging, it takes away voices from Autistics who had to fight to get their voices, Please keep in mind when someone id advocating for acceptance or boycotting against an organization you are only seeing a small fraction if their abilities and their challenges you don't know how hard they had to work to get there you don't know what challenges they have on a daily basis and by telling them they aren't impaired or disabled enough you are not only making assumptions based off of what little you see but you are also PUNISHING them for making progress (something you insist you want for your child or loved one) but taking away voices many of us spent years fighting and struggling to get, Voices that could give you insight and help you be able to help your Autistic loved on. so Please stop assuming and listen you then maybe we might both learn something and be able to help each other!
please stop making snap jugments about somones abilitiies or lack of ablities off what the post about, stand for or from brief interactions
please stop using accomplishments to take voices away fro Autistics
please stop assuming someone cant have severe disability and impairments and still want acceptance and to be treated like a human
please stop using functioning shaming!
thank you!
Functioning shaming (1) the act of taking a person's accomplishments and your perceived functioning abilities based of the fact they have strengths or abilities in one area and or choose speak out an organization that that talks about them yet shuts them out and is harmful or they choose to advocate for acceptance and understanding, to dismiss and belittle their challenges and efforts to get to where they are today and silence their voice from the discussion of their disability(2) The act of saying someone is to impaired and disable to have an opinion and assuming they want a cure or hate their disability because they have many challenges and may not be able to fully self advocate yet / using their impairments to deciding they have your opinions and thus you speak for them and know what they want and need. (also using their impairments to overlook what they can do and their abilities. (3) the act of punishing autistics and others with disabilities for developing or not developing skills) (4 The act of using ones abilities in one area or lack of abilities in an area you to silence them or speak over them
image description: purpl backgroound with the text of the definition of functioning shaming
The Real Autism Crisis
TW all the trigger warnings an.iesm, death abuse, and pretty much everything
There is a very real and serious Autism crisis
Yes we do have and Autism crisis and it seems t be an invasive epidemic world wide! But it's not what you think!
The crisis isn't about "the rise in autism rates," something that is largely do to more awareness and understanding about Autism
No the crisis is invasive, frightening and dangerous
The Autism crisis is....
Am invasive lack of presumption of competence especially when we do not have or use verbal communication or when our verbal communication is deemed poor
It's the assumption that those who do use verbal speech need few or even no supports at all, and the reality their needs are often over looked, ignored and rarely accommodated
autistic communication rights are ignored, before we can have access to a full comprehensive AAC system we are often told to "prove it low tech first," when we don't use AAC 100 percent perfect right off that bay we are said to be in interested, many alternative communication methods are viewed as "con traversal and even when we are clearly typing on our own either the authenticity of out words or that of our diagnosis are called into question
The communication support needs of autistics with decent to excellent verbal skills is overlooked and ignored entirely
The fact that communication and verbal skills are seen as binary concepts
The fact that access to communication AIDS and a variety of methods of non speech based communication methods isn't seen as a basic human right for us,
The fact that people assume we don't communicate if we can't use or don't use verbal speech or an AAC
The fact we have to remind people behavior is communication
That children are expected to spend 40 plus hours a week in therapies designed to try to make us indistinguishable from our peers or as normal as possible while also getting other therapies and being expected to also go to school, childhoods stolen in hopes of making us seem normal
A growing number of dangerous and experimental treatments and abusiveAnd therapies in hopes of curing us, many of which would be considered child abuse with a non autistic child, prominent example is mms (mini ale mineral solution aka bleach fed to children and administered though enimmas
The fact that autistic friendly therapies are not seen as a priority and learning to pass as normal is even at the detriment of the autistic individual
The fact RPM isn't more widely available and I'm not sure if insurance will even cover it
The fact that stim suppression is considered a training goal even though stimming is critical for many of us
The fact that essentially dog training techniques are used as therapies on us to train us to act normal.
The fact there are therapy goals at teaching us to play "the right way" (aka the non Autstic way)
The fact it's seen as acceptable to talk about us like we aren't Ben there when we are next to you!
The. Fact that proper clump comorbidy in with being part of autism and don't look at them separately as additional things we have to deal with,
The fact that organizations that claim to represent while ignoring us when we say something is harmful and they will try to silence us and claim to speak for us while shutting us out, spreading fear and stigma.
It's the attitudes that murdering us is some how mercy, while our killers often parents and care givers are painted as victims and us the undo burden who they had to endure, our support needs and challenges are used to justify our murders, that when we are murdered the reports aren't about how it is an unspeakable act of cold blooded murder but rather about the struggles of our killers,
The fact society seems to send them message we and our loved ones are better off if we were never born or if we are dead
The fact that we have to fight for our basic human rights and those are often ignored.
The fact that parents showing videos of us at our worst to "educate" by posting about how hard and horrible autism makes their lives is seen as acceptable and our dignity and privacy not being valued especially in the face of parents talking about their suffering
The fact parents suffering matters more then the Barrie's that we face due to ableism and a societies attitudes about us
The pervasive use of functioning labels that paint an inaccurate picture about an autistic individual and our needs, capabilities and assets,
The using of functioning labels to silence and function shame autistics
The fact that being able to type is used against us to invalidate out voices especially if we type well (spoiler how well we type tells you nothing about what challenges, daily struggle S or impairments we have)
The fact that any small success or having certain life skills even if they are not as important as ones we struggle with is s used against us to silence us
The fact that functioning shaming is a thing
The voices of Parents " professionals and organizations being valued over those of actually Autistic people
The mere fact an autistic person can disagree with something or say "wow that's harmful," or "how would you feel if that was up you," to things like meltdowns p or personal care things being put out on the Internet for the world to see and 100 parents will jump in and attack or harass the autistic person, really all an autistic person needs do is disagree with the something posted by a parent, org or a non autistic and they get attacked.
The fact that there are amazing parents and family members out there who work to lift up Autistic voice, support neurodiversity fight for presumtion of comptenence fight agaisnst all the issues on this list to better the lives of their children and loved ones only to also be dismissed and told they have it easy and clearly don't know what "real autism is,'
this whole "this is real autism," thing often used by people who feel autism isn't being portrayed right often used as an attack on what they see as ?to happy a depiction" and ignoring the fact that autism is complex.
Autstic adults and children are constantly exposed to hearing terms like "burden," "crisis" "Broken," "lost," damaged and "trapped" in reference to us and being autistic and this is seen as ok while "valued," "competent," "life worth living," "being seen as a whole person," and any discussion of acceptance and understanding is seen as"glorifying autism," controversial and radical
The fact that people take offense to the Neurodiversity movement that basically say different neurology and disability is part of human experience, disabled people and people with different neurologist have a right to our basic rights, understanding supports we need and acceptance for who we are and it's ok to have different neurological make up and to have disabilities what ever they may be it doesn't take away from our value as a person
The insistence one use of mental age
The idea IQ test accurately determine anything really.
The fact that most of the funding for autism goes into studies about causes, prevention and prenatal testing instead of into studies on what services and community supports are most beneficial to autistics, to adult services and community support or to services for adults
The fact that April is often a traumatic time for Autistics as we are looded with harmful awareness adds that stigmatize us, stories of our peers treating us as humans and being praised for it and inspiration porn, and of coarse lets not forget the light it up blue which is a giant add for autism speaks that the autistic community has addressed as harmful and is the center of a massive boycott,
The fact that the autistic run and founded events in April for acceptance and understanding such red instead, the blog challenge, and a variety of alternatives to light it up blue are generally ignored drowned out by the things lifted above
The fact that services and supports for autistic adults especially in community supports are rare and hard to find
The fact most services cut off at 22
The fact most organizations providing service dogs for Autistics will not train them for adults and many are either scam or well intentioned but promoting and using practices/tasks such as tethering that are highly dangerous to both dog and he autistic individual. Even though there are a variety of tasks that guide and hearing dogs perform that can really help mitigate and manage sensory processing issues.
The fact that poor families, families of color and minorities and females are less likely to receive an autism diagnosis and the gender and cultural biases in the diagnostics and the autism field
The fact most people think of autism they depict a white male child often sad looking
The fact that even though every other disability community has pretty much realized negative awareness techniques and using pitty to get funds was wrong and damaging so they did away with it like in the 60s or 70s (it's 2 am I don't have the exact date more the spoons to look it up) up yet this is the main way fundraising is done in the autism community
The fact that electro shock is seen as a reasonable way to treat autism and is just reaching the fear in hopes of having it banned as I humane in the year 2016! Please FDA ban aversive shock therapy!
The fact sensory issues are rarely taken seriously
The fact that non autistics are praised for treating us like people
The fact we have to fight to be seen as humans
The fact that passing means our diagnosis is devalued and not means we are denied out autonomy
The fact that our sexuality is ignored
the fact that we spend hours in compliance training
the fact that having emotions such as anger, frustration and being upset while normal for everyone else is seen as being defiant and uncooperative,
The fact that autistic is used as an insult now by some
The fact that use of autistic is ignored and even painted are therapy
The fact that when autistic choose to use identity first non autistic people correct us and tell us how to talk about ourselves and insist we use person first.
The fact we are often given little to no autonomy
The rampant infantalization of autistics
The fact doctors still tell parents if we don't do X by age 5 we never will
The fact that the entire focus is to make us normal and not to accommodate us and help us grow with our strengths
The fact you can be denied an organ transplant because you are Autistic
the practice of forcing eye contact
The fact that the world tells us it's better we pass and burn ourselves out completely then we seem even a bit Autistic
The fact that our accommodations and needs aren't taken seriously and are often treated as not real or a burden
The fact that we are seen as tragedies not people
The fact it's 2-3:30 am and I can rattle these off the top of my head despite being half awake!
I know I am missing so many more!
This is the real Autism crisis
The real Autism crisis is how society treats us the Autism crisis is Ableism!
this is a crisis we must address and needs to be dealt with!
this is the Autism crisis Autistics face everydaay!
Lighting it up blue hurts Autistics! Wear Red instead and hangmulticolored light too!
Hello,
This year I will not light it up blue, I will not wear blue
Please join me don't wear blue don't light it up blue wear red and hand multicolored lights instead!!!
What's wrong with blue?
To starts off Autism is a vast spectrum, no to individuals are the same, symptoms And the severity of the symptoms are different for everyone on the spectrum and even this is a bit fluid for autistics. A single blue light is very one sided one view,
Light it up blue and wearing blue was started by autism speaks. autism speaks is at the center of a major boycott and is the only charity continually challenged by the people they claim to represent and there is a very good reason for it!
Autism speaks has several MAJOR issues that can not be ignored! From irresponsible spendings where only 8 percent goes back into the community in the form of services and 43 percent going into research that does NOTHING to help autistics and is generally geared towards things such as prevention and prenatal testing which would enable parents to choose if they want to abort the child based off of a prenatal test, (this is based off of their 2011 tax form because in their 2013 tax form they merged "awareness, such as adds and self advertisement with "family services making calculations very difficult)
This means Autism Speaks is actually TAKING money out of the community that could be going towards providing much needed supports and service
What maybe even worse then taking much needed funding for resources out of the community
Autism speaks uses fear and demonizes autism to get donations, Awareness is important but it is no good when it is done through creating fear, pity and stigma and light it up blue is their national awareness campaign and is nothing more then a thinly veiled self advertisement and I simply can't support autism speaks!
I refuse to support an organization that tells the world that I and others with my disability are
Lost
Broken
Missing
A Crisis
Tragedies and
Ruining our families lives
If any other charity said this about any other minority there would be national outrage! What if this was how national female, Hispanic, black, pagan, Muslim or christian groups spoke of the people in their ranks? What if they went even further and had none of those individuals in their actual organization and refused them a voice? What if they garnered pity for family members who killed these individuals sighting that person's gender, orientation or religion as being so hard and burdensome their deaths were understandable and even acceptable? That what Autism speaks does, when you support Autism speaks this is what you are supporting!
So I will not light it up blue, I will not support autism speaks and I will not help spread an awareness that at its core harms Autistics!
Instead I am going to promote Acceptance and understanding by wearing instead and hanging multicolored lights for Autism Acceptance and by participating in events created by Autistics!
That's what we really need acceptance, supports and understanding so please join me in raising the voices of my fellow Autistics, promote acceptance wear red instead and hang up some multicolored lights and shine a light for acceptance of the entire spectrum!
Thank you!!!
For more Autism Acceptance month activities Check out
Not just blue- multicolored lights for Autism Acceptance https://www.facebook.com/events/1418248198477746/
Walk in red https://www.facebook.com/events/441004906049419/
Autism Acceptance Month https://www.facebook.com/events/640472342746324/
This year I will not light it up blue, I will not wear blue
Please join me don't wear blue don't light it up blue wear red and hand multicolored lights instead!!!
What's wrong with blue?
To starts off Autism is a vast spectrum, no to individuals are the same, symptoms And the severity of the symptoms are different for everyone on the spectrum and even this is a bit fluid for autistics. A single blue light is very one sided one view,
Light it up blue and wearing blue was started by autism speaks. autism speaks is at the center of a major boycott and is the only charity continually challenged by the people they claim to represent and there is a very good reason for it!
Autism speaks has several MAJOR issues that can not be ignored! From irresponsible spendings where only 8 percent goes back into the community in the form of services and 43 percent going into research that does NOTHING to help autistics and is generally geared towards things such as prevention and prenatal testing which would enable parents to choose if they want to abort the child based off of a prenatal test, (this is based off of their 2011 tax form because in their 2013 tax form they merged "awareness, such as adds and self advertisement with "family services making calculations very difficult)
This means Autism Speaks is actually TAKING money out of the community that could be going towards providing much needed supports and service
What maybe even worse then taking much needed funding for resources out of the community
Autism speaks uses fear and demonizes autism to get donations, Awareness is important but it is no good when it is done through creating fear, pity and stigma and light it up blue is their national awareness campaign and is nothing more then a thinly veiled self advertisement and I simply can't support autism speaks!
I refuse to support an organization that tells the world that I and others with my disability are
Lost
Broken
Missing
A Crisis
Tragedies and
Ruining our families lives
If any other charity said this about any other minority there would be national outrage! What if this was how national female, Hispanic, black, pagan, Muslim or christian groups spoke of the people in their ranks? What if they went even further and had none of those individuals in their actual organization and refused them a voice? What if they garnered pity for family members who killed these individuals sighting that person's gender, orientation or religion as being so hard and burdensome their deaths were understandable and even acceptable? That what Autism speaks does, when you support Autism speaks this is what you are supporting!
So I will not light it up blue, I will not support autism speaks and I will not help spread an awareness that at its core harms Autistics!
Instead I am going to promote Acceptance and understanding by wearing instead and hanging multicolored lights for Autism Acceptance and by participating in events created by Autistics!
That's what we really need acceptance, supports and understanding so please join me in raising the voices of my fellow Autistics, promote acceptance wear red instead and hang up some multicolored lights and shine a light for acceptance of the entire spectrum!
Thank you!!!
For more Autism Acceptance month activities Check out
Not just blue- multicolored lights for Autism Acceptance https://www.facebook.com/events/1418248198477746/
Walk in red https://www.facebook.com/events/441004906049419/
Autism Acceptance Month https://www.facebook.com/events/640472342746324/
"I am Autism Speaks" An Adaptation of "I am Autism""
Hello,
A few Years ago Autism Speaks made a video that outraged the Autistic community called "am Autism" they got such a strong backlash they had to take it down, However the memory of it is still discussed in toe community today and you can still find videos of it on social media. a while ago I got to thinking about it before I realized this video was spt on with just about everything they were saying, However it did require a few Edits and they forgot to add "speaks" after they said Autism, So Today to distract myself from Nim's loss I made those Edits for you please Enjoy. My hope Is maybe Autism Speaks if you read this you will understand this is not meant to be mean spirited but to get you to do some real inwards thinking and consider the messages about Autism you are giving to the public Even though many of you have good intentions the way you speak about Autism is harmful, Please do some inward reflection and consider the messages you are sending out, ask yourself "how would I feel if a large organization said these things about me?" and consider just WHO you are choosing to ignore and shut out The Autistic Self advocates, and our family and friends who do not see us as tragedies or burdens but as people who need to do things differently but are still valuable and who still have voices weather we speak, sign, type to communicate or don't yet have the ability to use AAC so we communicate through our behavior. We live with Autism everyday, all we want is for you to hear us and to listen
"I Am Autism Speaks"
I am Autism Speaks
My hatred is visible to your children, but if I can help it, It is invisible to you until it’s too late.
I know where you live.
And guess what? I live there too.
I hover around all of you.
I know no color barrier, no religion, no morality, no currency.
I speak your language fluently.
And with every voice I take away, I acquire yet another language.
I work very quickly.
I work faster than pediatric aids, cancer, and diabetes combined
And if you’re happily married, I will make sure that your marriage fails.
Your money will fall into my hands, and I will bankrupt you for my own self-gain.
I don’t sleep, so I make sure you don’t either.
I will make it virtually impossible for your family to easily attend a temple, birthday party, or public park without a struggle, without embarrassment, without pain.
You have no cure for me.
Your Advocates don’t have the resources, and I relish their desperation. Your neighbors are happier to pretend that my propaganda isn't harmful--of course, until it’s their child.
I am Autism Speaks, I have no interest in right or wrong. I derive great pleasure out of your loneliness.
I will fight to take away your hope. I will plot to rob you of your children and your dreams. I will make sure that every day you wake up you will cry, wondering who will take care of my child after I die?
And the truth is, I am still winning, and you are scared. And you should be.
I am Autism Speaks. You ignored me. That was a mistake.
And to Autism Speaks I say:
I am an Autistic self advocate, a father, a mother, a grandparent, a brother, a sister, a friend.
We will spend every waking hour trying to weaken you.
We don’t need sleep because we will not rest until you do.
Autistics and Family can be much stronger than Autism Speaks ever anticipated, and we will not be intimidated by you, nor will the love and strength of my community.
I am an Autistic Advocate riding toward you, and you can push me off this horse time and time again, but I will get up, climb back on, and ride on with the message.
Autism Speaks, you forget who we are. You forget who you are dealing with. You forget the spirit of Autistics, and mothers, and daughters, and fathers and sons.
We are Qatar. We are the United Kingdom. We are the United States. We are China. We are Argentina. We are Russia. We are Ireland, We are the European Union. We are the United Nations.
We are coming together in all climates. We call on all faiths.
We use picture Schedules, AAC technology, blogs, facebook, social media and Twitter, and a growing understanding to spread Acceptance you never anticipated.
We have had challenges, but we are the best when overcoming them. We speak the only language that matters: love and neurodergance and disability acceptance
Our capacity to love is greater than your capacity to overwhelm.
Autism Speaks is naive. You are alone. We are a community of warriors.
We have a voice.
You think because some of us cannot speak, we cannot be heard?
That is autism Speaks weakness.
You think that because you build a wall of fear and stigma, I am afraid to knock it down with my bare hands?
You have not properly been introduced to this community of parents and grandparents, of siblings and friends and schoolteachers and therapists and pediatricians and autistic self Advocate.
Autism Speaks, if you are not scared, you should be.
When you came for Autistics, you forgot: you came for me.
Autism Speaks, are you listening?
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