Outline of what to write up for notes for an AAC evaluation

I've been recently asked for what I wrote up and shared for my AAC evaluation. The answer is a lot. I went through every last detail I thought possibly might be relevant and wrote it down ahead of time so that it was already available.

I find this both a really helpful method of preparing for an appointment in general because it makes me think about things ahead of time, and for more stressful appointments having things written out and printed out makes it a lot more accessible communication wise, because I can just pass over the documents and point out answers rather than need to remember in the moment things to say. I can spend days or weeks or months preparing what needed written up ahead of time. I can give myself all the preparation time I need. For an AAC evaluation I quite literally spent months preparing the relevant document. Giving myself that time let me put together what was best for me.

I've found as long as its well organized a lot of doctors appreciate this - but that the organization really matters, because they want to be able to skim, flip, and get an answer fast, not have to read all of 10 pages or whatever that was written. If they only end up reading less than a page of 25 pages that was written it might still be incredibly valuable, but it comes down to knowing the right page across those 25 pages.

That said I put together my outline for what to have for notes to prepare for an AAC evaluation to have available for an SLP. Each of these sections was well separated, with clear headers, even in subsections splitting things up smaller than these that are so specific to my situation that its not helpful to share. Lists are also frequently helpful.

My outline of what to write up for an AAC Evaluation

• Goals
• General communication Goals
• Priorities in an Evaluation
• Priorities in a Communication System
• What is not a goal for me
• About Me
• General about me, who am I, how do I spend my time, what do I like to do
• What is my experience with AAC
• What is my current set of disability supports
• About My Communication
• History by age
• Description of current communication
• Unreliable, Intermittent, Insufficient, Exhaustive Speech
• Definitions of Each of These
• Descriptions of how each of these describe me
• Example situations for each of these
• Overall summary of my current speech
• How do I communicate if I don't use speech
• Why do I use thing
• When do I use thing
• What works well
• What doesn't work well
• Relevant medical history
• Diagnoses that are directly associated with communication and how each are associated
• Diagnoses that are associated with what I can use for AAC and how each are associated
• Other medical associated traits that aren't Diagnosis that are relevant for them to take into account
• About my Current AAC System
• Overview of system
• What App(s) I use
• Preferred layouts, etc
• What access methods I use
• What do I like about my current system
• What doesn't work for me about my current system
• What issues am I having with my current system?
• What sorts of things are missing from my current system?
• How is this limiting my communication?
• Including specific examples
• What do I want in a system?
• Why is the above information leading me to think I need something different?
• What is the above information leading me to think I need?
• What do I need for alternative access and why?
• When do I need and/or otherwise use alternative access?
• How do I use alternative access? How does it fit into my life?
• Why do I use alternative access?
• What have I tried and why don't those work?
• What works and what doesn't about the best I have found so far?
• Features I need in a system
• Software
• Hardware
• Include details like why might these features be particularly important to me if not immediately apparent
• Summary of what I want to try

Specific notes I want to call out are:

• What things aren't priorities - while this can be short and it might not even be relevant - if there are things you know aren't things that matter to you, write it down. I've specifically had this be a particularly helpful section because of people being like oh, this thing I'd assume is a priority just isn't for you because you have different goals than I would.
• Defining intermittent/insufficient/unreliable/exhausive speech - even with giving examples, even with giving descriptions, giving definitions of the terms that are relevant to you is actually really helpful and makes a huge difference. It not only makes it easier to communicate with them, it helps with being taken more seriously when you're someone who as access to speech sometimes and not always.
• What have you tried and why doesn't it work - having this written out literally had my SLP already making suggestions about what I needed in the first skim through of this document. Being able to say this has already been tried is incredibly important when you're looking at insurance funding, but its also important for figuring out what to trial.
• Just plain, what do you want - so many people get tied up in needs, what do you want, what do you like do to, the fact that you're human and have preferences. You're allowed to prioritize a waterproof device because you like to spend time near the water. You're allowed to say you like high energy dogs and a device has gotta be able to sustain that. You're human. Be human.

My AAC is

My AAC is how I communicate. My AAC is freedom. My AAC is what lets me say what I want to say (at least some of the time). And my AAC is mine. It is part of me.

I am an AAC user. I am an AAC user who happens to have access to speech sometimes. But I am an AAC user.

And people ask, what AAC is?

It's what it is. It's part of how I communicate. Its the tools that let me do this. AAC is AAC. AAC is a wide variety of methods of communication. AAC is so so very important.

What its not is 'something besides speech'.
What its not is 'this is what AAC stands for'
What its not is the medialized 'you go through these gatekeepers and they deem you disabled enough to get services you've needed for decades but people have been denying you trying to normalize you'

What its not is any of the definitions I see people giving since the are so much trying to formalize and fit into boxes and make it easy and pretty and tied up in a bow.

My communication is what it is, messy and imperfect and using piles of tools. Built from the grave of what professionals tried to form me into, and me searching and searching and searching for things I need.

My communication is what it is, made of so many pieces. With at times professionals abusing me and at other times professional supporting me to have more accessible forms avaiable to me.

My communication is what it is, and it is mine.

I am an AAC user. And my AAC is made of my fighting for accessible communication. It's not made of This Thing or That Thing. it's not made of being given access. It's not made of easy simple patterns.

My AAC is made of this tower where I pull from all types of communication. Where I've searched and found and said my AAC isn't either or. My AAC doesn't have to fit in your boxes. My AAC is part of me and I don't fit in a box you confine me to.

My AAC is not some sort of this is what I use instead of speech.
I mean it is.
But its so much more than that.

My AAC is not some sort of this is what I use alongside speech to make it easier to communicate.
I mean it is.
But is so much more than that.

My AAC is not some sort of I use this in order to communicate when I can't communicate with speech alone.
I mean it is.
But its so much more than that.

Because in so very many ways my AAC isn't about speech in any form.

My AAC is about typing and symbols, high tech and low tech, grabbing a random item, getting things across however, its all communication.

My AAC is about sitting there never saying a word not because I can't or because I won't or for any other reason but because why would there even be a discussion about speech. Who cares. It just isn't relevant. Not everything is about speech.

My AAC is about fire and water, rocks and leaves, the ways we support each other and a cat's purr.

My AAC is about freedom from speech more than it is about speech. It's about the ability to say, nah, not not everything is about that.

My AAC is about the fact that I'm even writing this is too speech-centric because I shouldn't have to say that speech doesn't have to be default.

My AAC isn't alternative. My AAC isn't augmentative. Because my AAC is not in comparison. My AAC is itself and that is all it has to be. It doesn't have to be 'not that'.

My communication is in reference to itself, its in reference to me, its in reference to my life my relationships. There's no reason to define me as 'not that' rather than who I am.

I'm not giving speech that much power to define my communication that much. I'm not giving speech the power of defining how my communication works when my communication has its own power.

My AAC isn't either or

I type to communicate. The most natural way for me to communicate my thoughts is through a qwerty keyboard. I can say things I can't in any way through the keyboard of my laptop.

I rely on symbol based AAC.

It's not a typing or symbols, its not the keyboard or pre-written phrases. It's the reality that I can't always communicate in the same way. It's the recognition that options are what gives me the ability to communicate in a wider variety of situations, and what makes me safe.

It's me choosing what I need to in the moment.

I see so many things about typing vs symbols, spelling vs talkers, literacy and AAC, freedom to communicate whatever you want.

If I can't get across the basic necessitites to get the care I need in a medical emergency, then it doesn't matter whether or not I can write poetry on that device, because what matters is survival. (Yet, poetry made from the things that we say to survive is its own poetry.)

I find the keyboard the most freeing, the easiest, the way that I want to use by choice when all else is equal, because it lets me get things across without fighting my bodymind.

And when all else is equal is not a thing which should be assumed to be true.

Things are not always the same, whether its the rain pouring down, whether that's people taking my AAC device from me and screaming at me for not knowing how to reply, whether its being in a pool, whether its crashing into crisis and not being able to coherently type the symptoms going on in my own body.

The situations of life are so extremely varied, and my AAC represents that. It's not this or that, its this and that. It's this and all of that, for all of the situations that I interact with. Because I'm not gonna assume everything is the same. 'Cause its not.

I rely on symbol based AAC. My bodymind isn't reliably the same with chronic illnesses affecting it differently day to day. What works best now might be different next hour. What works best is what works best right now, even when best is the limiting option of only able to say enough to keep myself alive.

But, while for me it comes down to typing is what I prefer and symbols are what I need in order to communicate due to chronic illness flares, it isn't that one or the other is better than the other, its that they both are used in the ways they are, when they are. They're set up for those purposes. They're set up for how I need them. They're not something thrown together like communication is one size fits all. 'Cause its not. It's far too complexly human for that.

And so I type, and I use symbols, and I use high tech, and I use low tech. I set up a variety of choices. And I do this for multiple reasons I don't have One Diagnosis that is why I use AAC. I don't use AAC for only motor skills reasons, or for only cognitive reasons, or for some secret third reason (such as anxiety) that people ignore. What we use, how we use it, why we use it, when we use it, all of it isn't either or.

I type for cognitive reasons and use symbol based AAC for motor reasons.

Because I do both. I use AAC for both cognitive and motor reasons. I use AAC for chronic illnesses that flare and stabilize, and for my baseline. I use AAC because its what works for me.

I use AAC because I want to.

But its not something simple like you type when its motor based and use symbols when its cognitive based. For me its always both motor and cognitive. And while typing is what is easiest for my baseline motor skills, with the predictability and reliability of how my keyboard moves under my hands, when I flare and am having difficulty hitting any button reliably, its symbols that are what are gonna be more effective at getting a message across in the amount of time that is necessary to say something.

And similarly, typing is lower cognitive effort for me, its for cognitive reasons that typing with predictive text is the thing that fits me best if you give me an on-screen keyboard. Doesn't change the aphasia that means that I need stepped through what I might want to say because I can't remember anything besides the word dishwasher.

It's not typing is this symbols is that, its not I use it for this reason or that reason. My AAC isn't either or. It's both and. It's all of me not parts of me. It's complex and additive and lets keep finding things to fit in missing pieces.

'Cause there are some. I find them all the time. And I find ways to add. I find what's missing. Since its yet another and that's missing. It's another way to use AAC, another reason to use it, another situation I didn't plan for, another combination of events that lead to things being hard to use. There's no one solution that fits everything. It's about making a toolset that fits me.

It's about making that tool set which includes the recognition that AAC always helps me but I could usually force some degree of speech if really required and I ignored how much it cost me, and there are times that no matter what I couldn't force speech. It's about making a tool set that recognizes that usually selecting buttons on a screen is just fine, and sometimes its just not possible. It's about making a tool set that recognizes that usually typing messages like this is what I want to do, and sometimes getting across a word or two to a communication partner who explains is the best that's gonna happen. It's the tool set the recognizes that AAC is both something I always need, and sometimes the things I need from it are situational.

It's setting up with an iPad and android tablet, high tech and low tech, choices strewn around so there's multiple within reach at any moment. It's not the you restrictions of either or, but the freedom of possibilities and choice and freedom to be able to communicate in autonomous ways.

And when that's AAC its AAC. When its something else, its something else. Because I'm gonna set up for having at minimum three different AAC methods on me at all moments, and if I speak there's nothing more or less valuable about that speech than anything I type. If I sign, there's nothing more or less valuable about signing. If my cat jumping into my arms and screaming is what makes you realize that I need assistance with an acute medical situation, then that's a great way to have my cat act as a communication partner.

Because none of this is either or. Either or is limiting and restrictive. It says i have to be one way, when I'm so much more than one label. I have things I'm great at and things I need help with. I have thins I like and things I hate. I have things that are easier, things that are harder, things I choose and things I avoid. I make choices. I communicate and communicate in ways that I myself, am in control of. I care about people and people care about me, I interact with them, and they interact with me. And none of it is as simple as either or.

None of it I must do this or must do that. None of it has to apply to a label of your choosing. It doesn't fit within the labels you try to stick onto me. None of it has to be because of this, caused by that, related to this diagnosis. None of it requires these interventions to fix. None of it requires anything others declare about me.

I don't fit in your boxes and if people fit there then great, but those boxes when they're being used to apply and force and restrict like they so often are is only removing ways for us to thrive as people. They're removing our humanity.

Saying we're Only this and Have to do that and AAC Must be used in this way because of Exactly This is saying I can't be human enough to be weird and wobbly.

And I'm rigid and fluid, a creature who swims through the sea and lives on land, from beyond boundaries and in liminal spaces, and who's communication fits me, not anyone besides who I am.

Words? This is words, but not everything is

Whether I'm seeing old friends or meeting new people for the first time, when I do this with my AAC the question of time is always there.

Talking moves fast. People are so quick to just say things and move on. They don't realize the time it takes to type this sentence. They don't realize the time it takes to realize what I might be wanting to type.

Time is relevant time is important time is everything and always something that will be part of whether or not I'm able to be involved and included.

But time and choice and communication is complex.

People will ask me how to keep up with a conversation with AAC because of how much slower it is. Most frequently, my answer is, am I even gonna type anything?

Because is that the right way to communicate. It's great and important, and its slow and takes effort.

What about the handflaps and the excitement. What about the pointing. What about the making noises that aren't words but don't have to be. What about any of things.

Because yeah, I type. And I type fast. And I will write up responses for a conversation ahead of time that wil mean that people will end up complimenting me because why did nobody else think of that it made it so much easier for us to move along with someone writing up their ideas ahead of time.

(Sometimes we have the advantage of actually thinking to take the time when we need it. Sometimes we have the advantage of knowing to stop and think when we can, because we have to, when others aren't used to it. Sometimes we have the advantage of knowing how to prepare because we've done it before and we're the ones sharing that this can be done and will make this easier to people who we've not realized hadn't recognized this. It is complicated. It is always complicated.)

I type. And I don't need to always type. I don't need to type when something else is faster. I don't need to type when I have another option. I don't need to type when something else is more natural. I don't need to type if I don't want to. I don't need to always do the same thing.

Sometimes people will start learning to use an AAC method and focus on it, get stuck on it, rather than the more general communication. How do you have people listen, and communicate, and pay attenion, and include you? The focus doesn't need to be one app, one device, one method. There is the question, the idea - how works for you and them and your relationship and getting ideas across and being understood to each other. What's comfortable here, now, with these people, in this situation, in this moment. It's not about an AAC app, its about your communication.

So sometimes, its just what is your natural instinctual reply? When will you be handflapping or bouncing or pointing or running over and picking something up? When will you be trying to get something across without words. When will words be what you want to use? When is what you want and think and do, automatically, the thing that makes sense? Does it? Is it actually what is working for you? Because you don't need to just throw out all the other communication methods that work with these people in this time in this place.

Not everything is words, not everything needs to be words, not everything should be words. Our words are powerful, and our words are ones we use when we want to, and our words are ones we use how we want to. But our words aren't the only communication method that exists.

And truthfully, when it comes to how people listen. They listen better to me, when its not only using my high tech AAC, as much as I will have it with me literally always, and as much as it is part of me. Me bouncing and squeaking and pointing and handflapping and then being oh let me type this out so you can understand my thoughts, is the me that is there and their friend, not a person who is behind a screen without emotions. The me who when you give an answer signs SAME very strongly will get a stronger reply than the me who tries to type any typed words explaining why I agree, because there is no way to explain the importance of agreement it that can explain the intensity of importance. The me who uses words when I need them gets listened to more, when I don't always use them, because I'm faster in other ways, but more so because I'm naturally me and all of the me and a variety of the communication methods are there. I just let myself be, and be fast, when fast is appropriate, and slow when slow is what makes sense.

My words are the words I use when I choose, and how I choose. I don't have to use them always. I can use them when I want and how I want.

Everyone else is fast, and I can't keep up, I never can keep up. No matter how much they try to pause and give me time, its helpful, its relevant, it makes me feel valued, and I'll still recognize the ways I'm feeling slow.

But what speed I'm moving at when I'm responding and how I'm responding can vary and I can be there as I can when I can how I can. I can sometimes be silent and sometimes only be able to reply to a few people and sometimes react quickly in way that aren't words. It can vary. I don't have to make myself try to always do the same thing. I can vary my speed as my speed varies, I can vary my communication as my communication varies, I can do what makes sense in the moment, I can just be me and let myself choose to put the effort where I want in the ways I want. And I can choose to be around people who listen to someone who can sometimes speak with their voice for hours nonstop about the importance of respecting children or proving correctness of programs and at other times can't formulate even their own name typing on their preferred keyboad. I can choose to be around people who let me have the time when processing words is so hard it can take an extended time to formulate even a single word reply with all the supports I have And if I choose that isn't worth the effort, and the best I can do is use signals that I am overwhelmed and cannot, will do what they can to support me as I want.

Because yeah I can use my AAC when I want and how I want, and its still not for anyone but me. It does not matter how much of the time I cannot speak coherently, I don't have to do that for any one at all, except as I want and as I need - it is not about them and it is not their choice and if I wanted to just turn and walk away and have that be the statement of nope not now, then great, that's allowed too. Because its not about allowed its not this is allowed and this isn't.

It's I can do what is right for me, whatever that is, because I am a person.
And I can have relationships with people who treat me as a person.
And its not about one method of communcation, its about communicating, as a person, with other people.

You are a good reason to use your AAC

AAC isn't about need.

How we communicate isn't about how needs and wants and only this exactly that.

It's about people and its about you

You're a person here. You don't have to communicate how others tell you to. You don't have to communicate in some way that society says is the only way. You don't have to somehow "earn" the use of AAC.

AAC isn't about need. It's not about only one option is best only one option is acceptable only one option only one way.

Because you get to choose your own life. You are in control of your own self.

If you choose it, for any reason. If you want it, if it helps you feel better but you don't feel you "need" it, if you do feel you need it, if you just want to practice and you're feeling like you're practicing, if its fun, if its because why not, any reason you choose, you should use AAC. Because it is your choice how you communicate.

And you get to choose when you speak and you get to choose when you use AAC. And you get to choose whatever combination of this and that and something else entirely: its not wrong, it won't be and can't be if it is you choosing and not you being coerced by others. It might not be the ideal set that makes life easiest for you, but its still your choice and if you're choosing something that makes some things easier or some things harder or some things take more time or some things more stressful in exchange for speed, then that's fine because you get to make that decision for yourself.

You don't need a reason to justify it. You just need to want to use it for whatever reason why ever why ever why ever. It all is a good reason.

You are a good reason.

There's no one best app

I see people frequently asking what the best AAC app is, and this is a hard question, because explaiing that there isn't one best app, its a question of the best app for a given person is not a single sentence reply.

It's easy to give a suggestion that is the app that works best for you or whoever your support. It's easy to give the suggestion of whatever you know the best.

And that app, is the best app for you! And not the best app for everyone. Because there's not one best app.

What works best for different people, is different, because we're different people, because we have different needs and different experiences and different lives. What works best is different, because we aren't all the same person. And that's a good thing.

For example, Proloquo2go is an app that is very popular for good reason. I have many friends who use this app. I can easily turn to people for whom this is the best app. And I trialed it, and it was complete nonsense to me. It didn't matter how much I tried, I could not make sense of it.

Others talk about how they really like it because of how intuitive it is. It was so confusing to me that after months I still hadn't figured out basics. People talk about this symbol set (symbolstix) being one that works well for many people. I cannot tell the difference between different symbols as a general rule - they are just, visual nonsense that only make the text more complicated, nothing that helps sort out what is what, or help me keep track of what is where. I never was able to figure out the editing, or many of the setting options. I got lost in the words to the point where I was able to confirm that I'd never be able to, no matter how much practice I had, use the vast majority of the built in vocabulary, with the layout they choose not to mention any I would add.

And this app is absolutely the best app for multiple of my friends.

The fact that I cannot use this, that it is not something that works for me, does not make it something that does not work well for many people. It does not mean it is not the first one I would recommend to people in some cases. Because we're all our own people with our own needs.

But it does mean, this is not the best for everyone.

None of them are. When some of us need symbolstix and others need PCS, when some of us need words in multiple places and others needs words in one place, we have different needs.

But also, what is considered easy to edit, is different person to person.

What is considered an intuitive settings menu, is different person to person.

How you swap between typing and symbols, how you use search, how you save what you're saying to say something else, how you speak aloud something while you're in the middle of typing, these all vary app to app and your preferences and needs and what is easy and intuitive varies.

And sure, a lot of this you can learn, you don't need to go out of your way to be perfect, and be afraid you're going to get something wrong because you haven't gotten to try everything. It's worth getting AAC even if you're not positive this is the optimal app it's worth getting a method of communication that is more likely a better one. But, how we talk and suggest things and help people find their way also is relevant.

(also, if you try something, and its not the best, and you find another app that looks better, then no matter how much there is talk of how hard it is to swap apps, that doesn't mean its not sometimes worth it when new apps are created or something else becomes financially available. Change is hard and also, communication methods becoming added to a system of options is not a bad thing if you can afford it)

But, there is no one feature that you can add, one change you can make, one option, that makes an app the best app for all of us (whether you're designing a new app or otherwise). Because we just, don't all need the same things. Because what is going to be the best for you, is still going to be confusing to someone else.

Choice is good. Different people using different apps is good. The same person using different apps at different times, because different apps are the best in different moments is good!

Because setting up for our own needs, rather than the expectation of meeting what others expect we should be, is good. Because actually doing what we need for ourselves, and having what works for us is good.

And because we're all our own people and actually recognizing this when we discuss technology and assistive tech is good. Actually recognizing and talking about our humanity and personhood is something we need to do more of.

But we also need to do more of recognizing that maybe we actually have individual preferences rather than you say you need AAC so lets recommend the one app that is the one that I personally know most about because it's obviously going to be the best when there is literally no reason to assume that it would be.

When I say I'm an AAC user that doesn't mean I'm the same as any other AAC user.

It means I'm me. And I'm an AAC user. And I don't know literally any other person who has the needs I have or the set up I have or the specific apps that works and don't work for the reasons that they do, that I do.

We don't all communicate the same way, we don't all use the same assistive tech to communicate either. Lets have there be more options.

Growing up on AIM, I could communicate

I'm an autistic millenial. Like other people my age, I grew up in the internet of the late 90s and the early 2000s. I grew up on forums and reading blogs. I grew up with it being a big deal who had dial up and who didn't. I grew up around y2k. And I grew up with AIM.

I grew up in the time of AIM. And sure, AIM wasn't the only messanging program around, or the only messanger I used. I had AIM and MSN messanger and skype's text chat, and chatrooms associated with forums, and found my way to IRC. But I grew up with AIM; I grew up on AIM.

Because AIM was what everyone had, and in many ways AIM defined this time. If you didn't have an AIM account you were ostrocized, whether it was by people who'd bully you for everything, or friends still being why are you so weird. It was expected. And it was text chat.

I grew up in a time where a text chat was was the cool thing to do, it was the expected thing to do for completely everyone, as everyone moved online, and was finding ways to keep contact with friends. It was easy, it was convinient, and it was something that didn't make you stand out. Typing, text, things that weren't speaking weren't disability things, they were everyone.

And me? Who didn't get IM accounts for the longest time because I didn't understand why you'd want to have real time conversations if you weren't forced. Because I didn't want to deal with needing to process all of those things even more. What it did for me when I was dragged into this socializing, was being, this is something I can do when I didn't realize anything would be doable.

But I grew up in the time of AIM. And that meant that my learning and discovering how to communicate in text, and that I could communicate in text, and that it was possible to do things I didn't know was possible, was socially acceptable. It was expected, it was something you were supposed to do to have conversations in these instant messaging programs. If you did otherwise you were the weird one. I was able to figure out what I needed - but without social stigma of this discovery process. I was able to figure out what I needed - and with things being provided to me to search and try, and explore. I wasn't stigmatized for the discovery process of maybe I can actually communicate if you give me the ability to type.

I grew up on AIM, so this was what everyone was doing, whether they needed it for disability or not. In those early years it wasn't the slightest bit out of place, when it would have been seen more strange for not having an instant messaging account than for typing to friends when we were next to each other.

And yes, these times, where we talk about older generations calling and younger generations texting. Where we talk about the first generations of people growing up online and teens living on social media rather than on the phone as teens. They're talked about a lot in terms of differences in communication in general, but it's also worth thinking about these in terms of progress in terms of non-speech communication, in terms of what is normalized.

In some ways, the first AAC I used was AIM. I would send messages to people sitting next to me becuase I needed some way to speak when I couldn't. I pieced what I could do together using the internet. And in other ways, nobody thought this was weird, I wasn't some odd disabled person. My communication wasn't stigmatized. They didn't notice I couldn't speak. They were choosing to type too.

I like turtles (or AAC is really hard)

I like turtles

I first started seriously looking at symbol based AAC in my mid 20s. I was working and needed more support than I had in order to be able to do my job - this was something that seemed like it would mean I could work when I otherwise couldn't. Vocational rehab was supposed to get me a setup, but avoided doing so until I needed to quit with my brain and body being unable to keep up with the demands of work.

This meant I first got the symbol AAC I use in my late 20s, when I was able to afford it for myself. I'd graduated from college. I'd worked in the field of education. I'd started typing when I was young, and was regularly using typing based AAC. I was able to communicate using speech at least some of the time. And while none of what people do, or don't do is important to their worth, I'm making this clear, entirely for the next point.

It took months for me to be able to say anything besides "I like turtles" on my symbol based AAC.

AAC is hard. It is really hard. Communicating is hard. Language is hard. Learning these things is so many different things you need to do, you need to know, you need to learn and put together, and piece together. But - even for someone who had been regularly using English in multiple other forms - I could not say more than a single sentence - the same sentence always - on my system, for literal months.

And think about the expectations put on toddlers? To within a week or two be using this to communicate?

I could never have done that - and I had the advantage of choosing the app I wanted, so I knew it was one that the organization worked better for my brain. I had the advantage of being able to organize and reorganize and continue to reorganize my app to make it work better for me (and in the process learn how it was set up!) I had the advantage of decades of learning how my body coordinated, because as dyspraxic as I am now, I'm not 3 years old and trying to learn my same dyspraxic body.

I had the advantage that I had the choice and control, and that when I was practicing, I could look through other folders, trying to figure out anything else to say, and get overly confused and go back to just saying "I like turtles" yet again, and nobody would tell me I had the mind of a toddler, when I was 28, because I had gotten lucky enough to have control of who was around me as I was practicing. I had the advantage that I could lead the way, completely.

And still, it took months, where all I could say was "I like turtles". And months of practicing, in ways other people did not see, and would need to trust me that it was worth having this app and having paid for this app. And months, of figuring out things in my own very personal way. And returning and telling people that "I like turtles"

These expectations of children figuring out AAC in weeks, or even in months, are unrealistic. We are asking people to do incredibly difficult tasks of figuring out how to communicate in new ways. And it can be worth immnense effort to learn to communicate in new ways, and add these to the set of methods of communication. But that doesn't make it not, really, really hard. (I will note, that whether or not something that is difficult is worth it is going to vary, sometimes something will be worth it, sometimes it won't be and something else would be, everything is personal. I know for me, what is worth using for communication and effort and how immensely hard it is when multiple things are really hard, is going to vary moment to moment - that's okay. Communication is complex.)

We're asking people to learn to communicate in ways that abled adults can't, as they talk about how hard it is to model, and not being able to do the modeling for their children, and yet, there's this expectation that children can pick it up within a month, despite that difficulty

And beyond all of these expectations, there is the simple experience. This is hard. This is really hard. And that's okay for me to say that this is really hard for me still and was really hard, and even though it's sometimes the best I have, that doesn't change that it's hard.

And, the simple description of, figuring out AAC by repetition of even the same thing is something I needed to do and that's okay too. And if you haven't guessed, I like turtles.

My AAC is my normal voice

CN: abusive speech therapy

When I was a child I was put in speech therapy because I didn't speak properly.

Sounds don't work that way. They don't combine those ways. They are more predictable than that. Don't you know, don't you know, don't you know.

Just do this. (But how?)

Just do what I say. (I know I'm wrong. I'm trying, it's not good enough)

Say these again. You need to repeat until you do it right. (But, why does saying cat like you do matter? people already know what I say)

You aren't trying hard enough, nobody will ever understand you. (I can't make sounds go right order in words you don't make me say over and over again anyways. I'm not saying anything. I don't want more words to say over and over.)

You don't need anymore speech therapy. [You speak properly now]

Don't you know, that the people coming up to me and making fun of my voice is something that doesn't happen enough I don't know how to talk about it. I know my voice is uncanny valley. But none of this bullying that has lasted into adulthood happens. My speech is normal now. They said so.

Don't you know, I don't need any sorts of support, I can't just speak. My speech is normal you see. What I actually need for supports isn't what matters. It's what people deem as normal. It's what people deem as close enough to normal.

Don't you know, it's do I try hard enough, when anyone notices my speech isn't like theirs its because I'm not trying hard enough. Don't you know if I can't read aloud its because I'm not trying hard enough. Don't you know if I get overly fatigued and my mouth stops moving in anything like word positions its because I'm not trying hard enough. Don't you know I just need to try, with more energy than any person, non-disabled, or disabled has. Because I need to look like others want.

Or that's what I'm told. That's what I have been told. That's what I was told for much of my life.

I talk about not using AAC until I was an adult. I was told my speech was normal. I just needed to make it sound normal. It was just needing to try.

I wasn't directly told AAC was failing, but they didn't have to.

I was told I was normal I was told I was normal I was told I was normal. I was told I had to be normal.

If you don't speak like this nobody will understand you

There's no alternative. I wasn't told AAC was a failure, but they don't need to say that when you're told there's no alternative.

My AAC is my normal voice.

Do people have to be normal to be understood and important and relevant and people? No.

But if my speech is normal, then my AAC is my normal voice.

Why is saying nothing preferred? AAC at the doctors office

I do not need to ask why is it that I've had multiple doctors ask me why not everyone does this typing to them, but why?

Why are we so focused on speech as society, that even when you cannot speak because of illness you try, and won't turn to the phone you are already caring?

Why is speech so prioritized that typing is so much a failure, subhuman, thing to do, that saying nothing is preferred?

Why are these doctors, where it makes their lives easier, because I am the first patient in these scenerios, that they can easily get a picture of the situation, that treat me as something even close to human?

I know these answers. Or, at least I am not surprised by any of this. I was one of the people taught from birth how much I was a broken child because my speech wasn't like everyone else's. I am someone who has been told too many times to count how much my words don't exist, because I am typing. I am someone, with the trauma of forcing speech. I am someone with this in my body at all moments, as my body needs to remember how to respond to people, to communication.

But, at the same time. I cannot understand. I can't understand why someone would choose to be trying to talk through coughing so hard it is making you black out - and I've been directly told by a doctor I was the first patient they've ever seen that didn't try to do such a thing. It is so much easier, to not rely on the unreliable body parts which aren't working in these moments of illness.

I want to tell people, this is an option. I want to tell people, it's okay, you aren't taking it from some other people, if that's what they're afraid of. Or, if you are afraid of being like "those people" then get though this doctors appointment you need to get through and then read the words of those people. Listen. You have so much to learn.

I want to tell people that this is an option. That, they don't need to speak at all moments of time, even if they do usually. Even if they do all the time, except for illnesses like bronchitis, such as I am referencing as an example here.

You aren't wrong if you use AAC because of laringytis or bronchitis or anything of this sort. It's great! It's for everyone. Use it.

I want to tell people this is an option. And society is wrong, in saying that you need to try to speak. You don't need to force yourself. You don't need to spend energy, or oxygen, or physical pain. You don't need to try to speak when you physically can't. You simply don't need to. And there are options. You can do what works.

I want to question how people using AAC in these moments is normalized, rather than if anyone else will see these doctors with AAC. I want to question what is being done now, rather than why I was the first. I want to know, what are we doing, so that people can communicate, however they can, whenever they can.

And I want that to mean everyone.

Not all languages look the same; our AAC needs to recognize that

I've been working on learning Finnish, and in order to do that, I've been trying to set up a Finnish AAC setup. If I am going to be actually learning a language, I need my AAC to support that language.

What I have found is that it doesn't support it. I can get a voice (and voice engines have a single voice choice, and there are so many languages that don't have any voices), but as I am trying to set up a symbol-based AAC, something I need, and use, it doesn't work.

I have spent an unreasonable amount of time searching, and yet, for all of my searching, all AAC starts from the assumption that languages work like English; that languages grammar work like English, or sure you might change word order between Subject Verb Object, Subject Object Verb, or so on but that can be just chosen with a different order of button presses. They come with assumptions that they can start with English, and order of button presses is all that might vary.

And yet it feels wrong, to not be able to label words as postpositions, with preposition as an option, but not postposition, for types of words. It is a challenge to make AAC work for me when I can add 8 inflections for a word and no more, like words never have more than 8 inflections, when working in a language with more than 8 inflections for the same word. Conguation works differently in different languages - we need to recognize this. Inflections for nouns, adjectives, and other parts of speech are work differently for different languages - we need to recognize this.

We need to, because currently everything is built around English. And not everytihng looks like English. And that means not all languages are supported. Because not all languages are English. And not all languages have the same structure as English.

And all languages need AAC.

There is so much talk of how many button presses to get to words, but when additional folders need to be created, then the number of button presses has to go up - sometimes dramatically. Every test sentence I tried was at least double the number of button presses of what it'd take to say in English to say an equivalent in my current attempt of building a board set in Finnish because of trying to force it to work despite lack of support. This large number of button presses is in large part because of differences in inflections - I don't have the number of noun cases supported and need additional folders for every noun and adjective. I don't have the idea of a language that looks like this supported at all.

But, there are many areas in which languages vary beyond this one example of noun cases - as well as many in which English is unusual. Tenses, questions, there's a lot of things that are just, we need to be able to support how it works in other languages as well.

I cannot find any symbol based AAC that looks comfortable to use with an agglunative language. And agglunative lanaguges exist.

People speak different languages. People have different native languages. People learn different languages. English is not the only language that exists. And limiting people to English because of their disability is a problem. Limiting people to only certain limited languages, because of their disabilities, is a problem. People speak different languages, not all languages look the same, our AAC needs to recognize that. And our AAC needs to support that.

Why don't you ask them?

I interact with a lot of parents of disabled children, in a variety of settings. I think the most common question I am asked is approximately "so you have this same disability as my kid, what does my kid need?"

Why don't you ask them?

I don't know what your kid needs. I am glad! So glad you are asking me, looking for adults like me, who have similar disabilities to your child, to learn from. I think that can help so much with learning. But I don't know. I don't know the things that your child loves, the passions your child has, the thoughts your child thinks. I can't know them. I'm not your child.

I can give advice. I can tell you We Are Like Your Child. I can tell you patterns exist, and that you should pay attention to patterns. I can talk to you. I can tell you things to read. I can help you find ways to learn how to listen to your child, and help you find ways to communicate with your child.

But I am not your child, and I cannot know what your child is thinking.

And similarly, you are not your child, and you cannot know what your child is thinking. You cannot know what your child can understand. Have you asked? These questions you are bringing to me, have you brought them to your child, and heard their thoughts, instead of just hearing mine, as useful as hearing the thoughts of a disabled adult is? Because the decisions of your child are what matter here. Your child has autonomy. Your child needs autonomy.

Sometimes, that's the things I need to say, is your child is a child and that means your child will grow up. Sometimes that's the things I need to say, is that you are being told disability is scary, and not, look, your child is a person we need the ability to make decisions over what we want to do, how we want to do it. We need to be able to rebel. We need to be able to enjoy things.

Sometimes that's the things I need to say, is simply. Have you asked? Because of being told, over and over, that you need to turn to professionals, and eventually that meaning you are learning you can ask me instead. But not realizing you can simply ask your child, when it's your child's life that you are controlling.

So have you?

Have you asked? Why don't you?

"But they don't understand"

You. Don't. Know.

You don't know what your child is thinking. You don't know what your child knows. You don't know what your child can do and what your child wants to do and what your child has never been given a way to do, because of people never saying it is available, and what people have been making therapy therapy therapy therapy and never letting there be a way to live instead of try to have us get fixed. You don't know.

Do you know they understand? No. Do you know they don't? No. You have absolutely no reason to know they don't. So find a way that communicates with them. Pay attention. Provide options. Try things.

Do they need more time to process? Do they need pictures? Do they need things provided in multiple ways at once? Do they need reduction of sensory input? Do they need things the same, or different, or anything, when being asked questions? How works? I know what works for me, I don't know what works for others. But assuming it works for you, doesn't mean it works for your child, and because what works for you doesn't work for your child, doesn't mean your child doesn't understand. It means that particular option doesn't work.

Or you might tell me they can't answer you. But answering doesn't need to be in words.

Have you provided any sort of AAC system that isn't their body language anyways though? Have you looked into what works, and given time to learn, and treated it as communication and not as behavior to be learned?

Have you recognized body language as communication?

You're telling me echolalia and stims aren't communication. Bah. Are you paying attention? Sure, communication is multi-level and not always direct and when you're expecting the words to mean what they say, you aren't getting that. But are you paying attention to when they're said, why they're said, how they're said? Are you paying attention?

Are you listening to the communication that is your child's instead of expecting your child to match your communication to make it easier for you?

You ask me, what you need to do for your child, but are you asking your child, are you asking your child in your child's language, are you listening to your child's language in response, are you realizing not everyone needs to say your language always, in the first place?

I can help.

You should be asking questions. Your child should meet us. Your should read things written. Things by disabled adults are so so helpful, and you, yes you, need autistic friends. But your child needs asked too.

Ask. Listen.

To us. And to your child.

a case against modeling

But modeling is the Best Practice for teaching AAC you say. It's how you do it. It's the best way we know to help people learn to communicate.

I say no. Modeling isn't the best way to teach AAC. The best way to teach AAC is simply communicating.

There's a whole bunch out there about modeling, what is modeling, how you should model, what are the best ways to model, how to be more efficient with modeling, but what it comes down to is that it always is being unnatural. You aren't naturally communicating. You aren't using words like you usually do. You aren't putting together sounds, putting together words, playing with language, using language, using sentences, the way you usually do. It's not talking about things you talk about, the world around you, what people like, reading books together. It's not how we talk.

How people model, how people talk about modeling, is like you can only show one button at a time. We don't learn only one word at a time, we learn relationships between words, we learn words and how they interact with each other. We learn words that pile upon another, playing with each other. We learn how some words fit with each other, and others don't, at the same time as learning words. We learn language. Because, we hear these things. We have them offered to us. They are used around us. They are used.

How people model is like you have to go out of your way to find ways to use these words. The important words. The core words. The words you need to make sure people know. Like it matters what people learn first. The words we learn can be the words we learn. We can communicate in multiple ways. Pay attention to the communication. But, going out of the way, isn't natural, it doesn't make those words make sense, they don't fit.

How people model is like, you need to think, and plan, and use numbers, and it these numbers and counting, and looking at the data just about makes it into trials. It makes communication into behavior.

My communication isn't behavior. My AAC use isn't behavior. My life isnt a series of behaviors.

You want to teach AAC?

What about just talking?

What about simply, using AAC?

What about simply, communication being, having AAC, and using AAC, and that being your default method of communication. Type, buttons, learn them, know them. You want to ask for food, use it. You want to talk about the baby bird, use them. You want to read a book, use it. You want to play with sounds together, joyfully playing with the fact that noises are noises and you can make specific noises with specific letters? Use it. Just, use AAC, however it gets used. Whether that's talking about dogs and cats, or about advanced mathematics, or both.

This exposes AAC. This shows language. This shows buttons. This is natural, you using it when and how you would be. This interaction. This is interactive. This isn't sitting there using AAC like it is some thing you would never want to use, but I guess you need to push these buttons to show that they exist (because seriously "I need to say all the words and press one" WOW that is saying speech is better, and like there is something wrong with me for using AAC for all of them, not like I'd want to interact with someone doing that to me. I would choose not to interact with someone doing that to me.) This is communication.

Modeling isn't communication.

Using AAC. Communicating with AAC, is letting someone communicate back, however they choose, is listening, is responding, is paying attention and learning someone else's language, as well as learning and communicating with an AAC app, but the important central part of this is that it's communicating. It's an interaction between multiple people. It's an interaction.

You want to teach AAC?

Use it

you wouldn't claim I don't know the words

You don't say I don't know words, that I don't know meaning, when I drop them. When my natural speech patterns (typing patterns really, we shouldn't call all word patterns, all word choice, speech patterns). When my natural word choice doesn't include pronouns in many situations, because they are just unnecessary. You know what I mean.

You don't say I don't know words, when I talk to people, about pro-drop and aux-drop. I know the terms. That makes it acceptable.

(That makes it acceptable because I was taught the words. Because I'm an adult. Who was treated like I could learn.)

You don't say I only know nouns, because my choice of how to say "I am hungry" is "food?"

but I mean, why would you say anything else? It says all you need to.

And meaningfully. You don't say you. Yourself. Don't know these words, when you do it yourself. I pretty much guarantee, you yourself, are dropping words from so called "proper english" what you claim is proper, and what you are trying to force upon people, because "they don't don't know the words" or "how do I know they know the words" or any other thing claiming people don't know something because they choose not to use it, just because they are disabled. Because what you use isn't what we are supposed to use.

it's okay for me. Because I know how to talk about what I'm doing. Because I was given the chance to learn which is being denied from others.

You don't claim I don't know the words.

Except, if you met me, and I was using my symbol based AAC, would you claim it then?

(I mean no, because when I'm using it I feel forced to use them all. I feel forced to not use natural language. I don't feel like it is truly a representation of how thoughts flow. It is helpful to me, but with how I have been treated with picture cards and with how picture cards and symbol based AAC is treated in general, I don't know how to make it natural language. I simply don't know.)

Would you claim it though? If I were to use my symbols like I do my typing? Or even, if you saw my typing AAC, would then, it be me not knowing words. Would I be instead of someone on the other side of a keyboard, someone who doesn't know things, because I would be now supposed to speak however you want, to prove myself, rather than to communicate.

Because language is meant to communicate. But treating it like this, it's not communication.

"How do I know if they know core words"

Do you know what they are saying? Are they successfully communicating? Is that the goal?

Or is proving their knowledge of core words the goal?

Is the goal getting across an idea?

Or the goal pretending to be normal

Except.
Normal.
Isn't.
Even.
Like.
That.

You are trying to make us into robots. Claiming it is the only way speech works. And it has taken effort to learn that I don't have to do that. But still, you wouldn't claim that I don't know these words, when I'm choosing now not to use them. And others, who have never been given the opportunities I have, you are claiming do not understand.

There is no one way to speak.

SLPs aren't the only choice, aren't always the best choice

I have mentioned on here before that I had abusive speech therapy as a child, though I didn't go into all of the details.

My entire life has been knowing how speech is the only option. It doesn't matter how much I communicate, it matters that I speak, and that my speech sounds right. It matters that others are comfortable with me, not my comfort. I was taught this. And no matter how much I know this is wrong when I say this, when I go to try to say something, that is what I've fallen back on, it is so deeply ingrained.

So when I got to AAC, it wasn't from SLPs. It wasn't from professionals at all. Professionals kept trying to force me into their boxes. Professionals kept trying to mold me into what they wanted. Behavioralist therapy does that. Behavioralist therapy leaves those scars. And none of that was about who I was, what I needed.

When I got to AAC, it was autistic adults sharing with me things I might need. It was AAC users helping me search and find things that might help. Professionals, every one of them, even with me explicitly saying this is something I need, would deny my need, would refuse to help, while AAC users would help me through the process of searching, evaluating, finding ways to figure out what was a good idea, finding out how to afford AAC.

Professionals are held up as all powerful, but the only thing I have gotten from professionals is pain. The only things I have gotten from the professionals is making it more difficult to communicate. The only things I have gotten is denial of my AAC needs.

And now here we are, with doctors wanting to send me to an SLP. With me using my AAC to communicate, and yet again an SLP being seen as the solution.

Nobody asks me. Nobody listens when I say I don't want to go. Nobody respects this, they just keep telling me that this is something I should do, because speech is all powerful, because lack of speech is a problem. Nobody lets this be my choice, even when they are saying it is.

SLPs are seen as how to make someone communicate, but the communication I am having isn't being listened to. The communication I had as a child, wasn't listened to, and I was abused for years, to try to make me "normal". The communication that is occurring now, saying I am not comfortable with this, isn't being listened to. SLPs are seen as too powerful, too important, too valuable, because speech is too valued, for some random disabled person's communication to be seen as meaning anything.

I have communication. I have always had communication. Respecting that communication is important, and taking power dynamics into account is necessary. The power dynamics of speech therapy is huge. The power dynamics of learning AAC doesn't have to be.

And we act like AAC is unknownable, unlearnable, impossible, without professional involvement, yet, AAC is entirely doable on your own. I never saw a professional for AAC, and I have my AAC. I have multiple AAC options. I use AAC regularly. My AAC is not somehow non existent because I never worked with a professional. My AAC is not somehow not existent because I got dedicated AAC as an adult.

Oh "but oh, what about those people who need it". Those people? Those people who "can't" use AAC otherwise. Yes, we have an ableist society where you can't afford so much assistive technology without insurance covering it (and where insurance won't cover any assistive technology for so many people), but that isn't because people can't use AAC, it's because they can't afford it.

Is there benefit? Sure. Sometimes. If you want it, its not abusive, etc, etc, etc. But it's not always the best choice. It's not necessary. It's not about people being "too disabled", some "needing it" and others being "not disabled enough" for it. It's about people having choice, even when the way they communicate is different than you first expect.

AAC is approachable without professionals. It means figuring out what people need. It means figuring out how to access what people need. It means figuring out setting up AAC. It means figuring out how to teach. It means figuring out how to learn. And that is absolutely a lot. It isn't that AAC isn't a lot of work. It is that professionals don't have some magic knowledge that isn't possible to do without.

You can evaluate what you need, what your child needs, what your friend needs, what whoever needs. Professionals don't know needs better than someone who is themself going to use AAC. A professional who watches for an hour doesn't suddenly have more information than people who care to communicate for years. Professionals have experience, if they are any good, and nothing to active abuse if they aren't. Evaluation comes from knowing, from paying attention, from looking into what this means. This isn't something only an SLP can do.

You can evaluate options. You can go through looking at what is available. You can research. You can talk to people who use different things. You can research. The internet is available. There is all sorts of options out there.

You can set things up, even with all the work that is.

You can teach, and you can learn. Even with the fact that learning AAC is hard. Even with the fact that learning AAC is a process. Even with the fact that learning AAC comes with different people needing different things to help them learn. And when help is needed, help can be accessed, even by those who aren't professionals. Sometimes this is by asking for advice, sometimes more hands on, someone else helping out more directly, but professionals aren't innately needed. Professionals can help, professionals can be useful, professionals aren't the only option.

You can use AAC without a professional. Sometimes that's the best thing to do. Sometimes that is the only option, either because there are no professionals around, all professionals around are abusive, all professionals around will only focus on speech and deny AAC, all professionals around refuse to see you because you are "too high functioning".

You can use AAC, because you can use AAC. You can help your children, your friends, your family (whatever that means to you), use AAC. You don't need to wait for a professional who might just abuse you.

And beyond that, you don't need to always try to search for the SLPs, when you have that trauma, when you know that trauma, when you live that trauma. When you have the trauma, of people trying to change you, of changing you, of forcing you into being who they want, you don't need to go back to those professionals, even if they are now supposedly good ones, you don't need to trust. Because, there are just other options.

And not only are there other options, for some of us, those other options, are reliably more effective.

The internet, autistic adults, AAC users, are how I got my AAC, are how I learned my AAC. And that is entirely fine. There is nothing wrong with that. There is all sorts of help I have gotten, that I see happening all the time. People get AAC because they are figuring out it is an option. People get AAC because they are learning how.

Communication is communication. It's not dependent on some people to get paid to tell you what is acceptable ways to communicate. Learning more ways to communicate is great, it still doesn't need pathologized, or professionals at all.

"but don't you wish you could speak so you could..."

I keep being asked by people who want to push me to speak is "isn't AAC so much harder than speech" or "aren't there things you can't do with AAC?"

I'm often prompted things I might want to be able to do if only I could speak, saying aren't I worried I can't speak because that means I can't do these things. Every one of these things I can do, and have done. Oftentimes more effectively with AAC than speech, because typing to communicate is just so much more effective for me.

I'm told things I can't do with AAC under their assumptions, being "don't you wish you could speak so you could do these things". And yet, I do them. Effectively.

The ideas of what I can do, aren't "I can't speak", or "I can't do something because it directly needs speech" or even "I need to find an alternate route sometimes". It is "clearly this is impossible, clearly we need to push speech"

I'm a college-educated adult, who has been at least aware of autistic advocacy circles for over 15 years, and this is everyday interactions for me currently.

Fear mongering surrounding how speech is necessary for survival is huge, everywhere, and literally the biggest challenge that I am facing at the current moment - not indirect things caused because of it (I avoid enough people and places already for other reasons, I already have enough plans on how to do things myself in place because I've been working on this for long enough) - directly the exhaustion of needing to hear it, over, and over, and over again.

Society is that overwhelming about speech, hatred of even a moment without it.

Questions I have been asked have included things like "Don't you wish you could speak so you could ask for help if you needed it"

Ignoring that I literally am asking for help more effectively than I have ever before in memory, because I ask for help more effectively using AAC, am unlikely to ask for help in the first place even if I should, and if it is a situation that I am pushed to the point where I will need help immediately, I am unlikely to have ever been able to speak, there is absolutely no reason that asking for help is associated with speech anyways.

I have asked for help from people across the world because of the internet, and it didn't matter that I wasn't speaking. When in the same location, I have a tablet, that can vocalize, with multiple apps, depending on what my current communication needs are. In the past I have done things like using my medical alert bracelet to point out to people allergic reactions in order to get treatment. I can get help, I have got help, using all sorts of manners that aren't speech, and generally find them much more effective for me.

But, speech is viewed as necessary for things as simple as asking for help. The idea of communication, of doing things at all, in other manners, even when I am actively doing so, doesn't cross people's minds. Fear, pressure, those are how people are interacting with me. Trying to scare me into how dangerous it is to not speak, this is the normal interactions I'm having.

I'm not being asked how I teach with AAC. I'm being asked don't I want to speak again, so I can teach. Or told, I clearly need to be speaking because children would be afraid of my AAC. None of this has any relation to my reality, to what I do, have done for years. Saying children will be afraid of interacting with me because I'm disabled - I'm not less disabled when I'm speaking. I always have needed plans for suddenly switching to AAC, I have used it in the past, I've taught with AAC now, its not a huge challenge, it means somewhat different planning. It means planning that I need to put into things, in order to do anything, because others don't expect for someone like me to exist at all. So, when others realize, they don't as how, they assume its not possible, they assume I don't exist. Yet again. Like always.

I'm asked, told, had it assumed, that speech is always easier. That speech would always be easier. Had it pressured upon me how much of a burden it must be to not have speech for even a moment. My truth is that I have been finding it immensely helpful. I have been finding it a time I can learn communication I have never managed in my life, no matter how much I have struggled, because speech has been so prioritized, at the cost of everything else, at the cost of whatever it does to me. I have found it is a time to not only heal from a concussion and not be so overwhelmed by the world because speech makes things so much more overwhelming, but to find ways to communicate better, long term, not in terms of new AAC apps, but in terms of, better understanding myself. Because speech isn't always better, and I've known that, but I've not known how to respond to myself, how to respond to the world, when I have had speech pushed so hard.

I'm being told now, that speech is always easier, and yet, right now, when I'm not speaking, is the first time I'm being able to even start to think about making decisions about things like what I want to eat, what I want to do in the day, what makes sense to me rather than asking others what to do, because I am not so overwhelmed by trying to figure out how to say any ideas that might come to mind that I can't get to the figuring it out. And these things, while they aren't things I am consistent at, while they are difficult, while I am able to get bits and pieces out and not everything, are things that will help me later too, because I am finding other ways to communicate, even when those other ways are ways I have already known, because they are sorting, organizing, and having it make sense, the ways that things fit together. Because speech isn't always best. And not speaking is sometimes meaning I can do more.

I'm being asked about how much I can't do because I'm not speaking, and I can't come up with anything at all I can't do, besides speak. I can communicate. I have other ways. But there are so many other things I can do better now. Because neurodivergent brains are neurodivergent, because what is expected isn't always what is best, because speech is prioritized because it is what is easy for others, not because it is necessarily good for me.

Don't I wish I could speak? Not really. My speech will come back as it does, and by the time it does, I'll hope I'll have built enough routines, practiced enough, have enough people be little enough afraid of me, that my part-time AAC use will be a larger percentage of the time than it was. Because I don't wish I could speak right now. I wish that I knew all along how to use my AAC more efficiently, and I am so hopeful that this is finally how to let me do that.

My AAC isn't for you

I've been a part-time AAC user, for I don't know how long (sometime around a decade using dedicated apps is my best guess), and yet many people in my life had managed to overlook, forget, or ignore this fact, because they didn't want to see me as such. To them AAC was for others, not for someone who communicated like I did (the fact I tend to spend multiple hours a day unable to use mouthwords aside, that isn't convenient for those who want to judge on the mouthwords you do produce, or how "articulate" your writing is.

This is relevant at the moment, because right now they can't ignore my AAC use. Back in May, I got a concussion, and I have had post concussion syndrome. While others around me have been stressed out, thinking about how hard it is not to speak, I haven't found there to be much of a change. I use my AAC - I have always had it with me anyways, I've used AAC regularly anyways. I use ip relay to make phone calls - I can't pick up the calls made to my cell phone unless I want to try to handle it on speakerphone and responding via typing on my tablet, but making calls is fine, and I had relay and used relay before. I have not added anything to my toolbox, using AAC full time for the past few months, I just use it more regularly. The only difference is in how people see me.

Because before, others wanted to deny that I was using AAC, and now they can't. Now when they are trying to deny, what they are trying to say is that I will be "fixed", I will go back to "normal speech", ignoring that I never had normal speech, and they are finding they can't do that. So how others around me see me keeps morphing, changing, with them realizing things that have always been true, with them trying to make me out to be what they want me to be, realizing they can't, trying to force it anyways, it failing again, over and over again. None of this is about me using my AAC, none of this is about what I need to do, or what I can do. It is all about the expectations that speech is default, the expectations that speech is preferred, the expectations that part-time AAC doesn't happen.

And these expectations of others, keep returning to trying to make me into what they want, more than anything else. They want me to speak, not only because it is easier for them, but because that makes me fit into their world view. Someone who teaches is someone who speaks, not someone who uses AAC. I shouldn't be an AAC user. Someone who they turn to for advice shouldn't be an AAC user (but who better to know about AAC than AAC users, people are the experts on themselves). I am not who they want, who they expect, who they see as who should be, an AAC user. That is too other. I am not supposed to be that visibly disabled.

The only reason I am not always that visibly disabled is because I am erased over and over and over again.

These expectations keep returning to people wanting to make me into someone who speaks for them, not for me. Not because it is easier for me. Not because it would make my life better. But because it would be easier, nicer, more pleasant, for others. They say as much. Directly.

My communication isn't there to make others comfortable. My communication is to let me communicate. My communication is how I want to communicate. My AAC is for me. And I don't care how much me having used AAC for a few months makes people uncomfortable, it has been easier to communicate in some ways than it has ever been in my life. And while I do want to speak again, and do want to be a part-time AAC user, not a full-time AAC user, my AAC use or non-use choice is not about others comfort, its about how easy things are for me. It's about how I can communicate what I want to communicate. It's about my life, my choices, what helps me. Not about being seen as disabled by people who somehow manage to pretend I am someone I am not.

I type to communicate

I type to communicate.

Look!
Here is communication.

Or when I type directly to people on the other side of the world, that's still communication.

What's different when we're next to each other? What's different if we're in the same room, and typing - computer to computer - rather than dealing with the challenges of spoken language? What's different if some are speaking and others are typing?

I type to communicate. Sometimes, it is the only way to get ideas across.

My tongue ties, and I try to speak. Words come out, but they're not what I mean. Confusion. Maybe it's good enough? But I want to do better, and I can when I type.

My brain revolts, and I try to speak. Nothing, I do not understand how the words go to speech. The migraine has stolen the key to that part of my brain. But I type, and can get what I need.

My body overloads, and I try to speak. Words come out, but it's hard. It steals capability. I cannot see. I cannot understand. I forget what I'm doing in the middle of my sentence. I type, and it's easy, it's understandable. My fingers understand what my vocal cords do not.

I type to communicate because it makes sense. Because it gives me more power to share with the world, thoughts I want to share, ideas I think others need to know.

I type to communicate because I can get more thoughts to more people. More ideas out of my mind. More stories where they need to be.

I type to communicate because communication isn't the same as speech and speech isn't the same as communication.

When it makes sense for me to speak, I speak.
And when it makes sense for me to type, I type.
And I can be someone who does both.

I can be someone who is verbal and someone who types to communicate.

I can be someone who is verbal and keep multiple AAC apps on my phone, turning to them at appropriate times.

I can be someone who is verbal and still think better in text. Just because I am verbal doesn't mean that my speaking voice is all of my communication.
Just because I am verbal doesn't mean I need to speak at all times.

I type to communicate. My words. My methods. My way of being.