Tuesday, March 12, 2019

If you want to improve the lives of Autistics you need to start with communication access.

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 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.


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, 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!

Thursday, November 1, 2018

Brain fog autistic speaking dray 2018

Ok yes this is a scattered mess thinking is had right now I’m sorry

t’s autistic speaking day but it’s also the day after Samhain (Halloween ) so my brain is tired and I feel brained, I don’t know much what to say, I tell myself I need to remember to conserve my spoons and write this a week or a month ahead, it’s not like I don’t have plenty of blog ideas that come and go unwritten because I don’t get the spoons to sit down to write them down so they go un written. However once again that didn’t happen this year so this year I’m doing a short half processing spontaneous post, but perhaps that is most appropriate, to honor the day of rest and accept my own need for saving spoons, to not strain to make a perfect logical thought out articulate piece about my right to be as a human, or how being Autistic is , or about the rights to communication access or how autistic people are constantly devalued and talked over and how we are taking this day back to have our voices heard  because at the end of the day no owns value should be based on our ability to explain these things to you in a week though out way or to word and all communication is valid this is autistic speaking day and for today I’m communicating more with gestures than AAC and that’s ok my thoughts aren’t clearly typed and skcattered and still I’m autistic and human and my life aphasia value this way as doe every autistic no mater how we communicate or how much we appear to be aware or understand, our voice in all forms should speak of autistic experience and our live still have value. We shouldn’t need to prove these for you to accept theses

Tuesday, June 19, 2018

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.

Monday, June 18, 2018

Happy Autistic Pride Day

Today is autistic pride day, and I really don’t have much I know what to say,  ca months ago I wanted to be sure to have some big post out for this day, but honestly? I’m still struggling to get back into the swing of posting again, and right now there is just so much going on in the world and in life  spoons are really low, so I want to keep it simple,  

Happy autistic pride day, remember to celebrate neurodiversity today, 
Uplift autistic voice,
Center the voices of Autistic PoC today! 
Presume competence 
Everyone has a right to AAC
Communication access rights are basic human rights! 
Embrace stimming
You are not a burned 
Your support needs are valid and matter and you deserve access to supports that’s are helpful and not harmful to you as an autistic person!

There is so much more I want to say, I want to make a long post about autistic culture, I want to talk about the importance of aac but right now none of it is falling into words, this year has gone by so fast I can hardly believe it, 

 I hope everyone has a wonderful autistic pride day! 

Wednesday, April 25, 2018

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!

Wednesday, November 1, 2017

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

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

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

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

Introducing comprehensive aac early and modeling is critical

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

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

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

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

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

the autistic who has neever spoke a words need for AAC is real

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

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

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

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

AAC- signs- sounds-pecs
verbal speech aac-sounds
or verbal speech-sogn
sign-aac sounds - letter board
letter board-verbal speech- pecs

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

Tuesday, November 1, 2016

Autistic Speaking Day I'm just going to be me

growing up I spent years learning very hard how to blend in, and yeah I largely failed at it, it seems  but still there are parts of me I blocked up and away  to try to blend, like shimming, I stim, a fair bit less than I did when I was little (though I am told I still stim a lot) adapting my communication and other things,


Blending in is not my goal 

I just want to be me 

I'm tired of trying to fit into everyone's boxes of how they think I /should be,  

Everyone has these expectation 

Either I must be or try to seem non disabled and I must be this (fill in chain of behaviors social skills, likes and dislikes, ways of communicating subjects of interest leaguer activities and interacting here) way to fit in to blend (said way burns out all spoons and is not achievable at all even with my best effort put forward )


I need to be autistic and disabled in exactly /this/ way (fill in arbitrary random expectation of what people expect me to be like and my life line to have looked like as a white autistic CIs disabled female) to have my current needs communication needs/style validated 

If your a certain age you can't like xyz 

If your disabled you can't like (fill in arbitrary things here)

I'm tired of having things that I have learned, skills I have gained relationships in my life and other things used as ways to invalidate my disabilities,

Growing up I went through a phase where I worked hard to blend because I was told and I believed it was the right thing to do, that how I would be successful, happy so I gave it my alll and when this stage hit I sort of failed in horrid ways  it was a mess,  i also wasn't able to properly figure out where and how and that's way to much to write about the day after Samhain, I mostly just stood out a lot more and looked a lot weirder,.....and then I started a weird mix of trying to pass harder while not caring and embracing being the weird one,

I'm still the weird one, the strange one and I embrace that  but I no longer want to burn my spoons to try and pass, I just want to be me,  I'm now learning to accept myself, and my limitations,  and that it's ok to use support  and do things in ways that I prefer and that work better for me.

That doesn't mean I'm backsliding 

That doesn't mean I'm faking 

That doesn't mean I'm trying to be deceptive 

That doesn't mean I'm lazy 

It just means I want to find and do what's right for me 

I just want to be me 

I am going to do what works for me, when anyone else does that it's considered a life skill, many times people find tricks and short cuts that work for them and help them and they are seen as adaptive and unique and resourceful, and everyone is encouraged to embrace themselves and be who they are unless who you are is autistic, then you are encouraged to blend and those things that might help you or things that are useful to you that might be seen as creative in a non autistic and be famous on Pinterest, is now a seen as a nusaaunce accomidation and something you should adapt passed needing, and if you do  for a little while then  your expected to be able to all the time.But here is the thing that's not how our brains work, if we can sometimes manage with out a support that doesn't mean we no longer need or will benefit from it.

And I'm tired of it all

Everyone else is allowed to be themselves, and I just want to be me, and that's what I'm going to do, because I can't afford to burn spoons on pretending to not be me, 

So I'm going to stim 

I'm going to communicate in the way that works best for me (AAC)

I'm going to use visual supports

I'm going to rely on the services I need

I'm going to enjoy my souixie and the banshees, London after midnight, the cure, mission U.K., switch blade symphony,as well as non post punk bands and some metal 

I'm going to switch between black clothes with reds greens and purples and earphones 

I'm still going to carry my pikachu in my backpack 

I'm going to swim and hike and go play at the park and do things I like 

I'm going to study geailge (Irish) and build an Irish vocabulary in my AAC app 

I'm going to hopelfully onday again partner with and use a service dog 

I am Autistic 

I am neurodivergent 

I'm just going to be me and these things are parts of me.

I've never fit into anyone's boxes perfectly ever and I'm not going to 

I'm just going to be me