Friday, November 1, 2019
it is Autistic speaking day and I am tired.
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.
Thursday, August 1, 2019
access to Low tech AAC supports is just as important as having 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
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
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
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.