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.

Speech in Medical Situations is lifesaving. Speech in medical situations is dangerous.

Things that are true:

1. Just because I can speak about medical topics doesn't mean I can say anything else at all
2. Being able to use speech even this much will get me treated so much better by so many people
3. It's so incredibly dangerous to have people assume that I can use speech in general in any way related to how I can speak about medical topics
4. You sure should question what would make someone capable of explaining the endocrine system in enough detail that you're like I don't even know what you're talking about because even before the "able to do that but not able to reply to questions at the 'what's your name?' complexity the capability to do this came from somewhere and the necessity to do this that means it happens sure says a lot about a person
5. Emergency speech is dangerous. That's something I so so so relate to. But topic based speech is also dangerous.

It's not just "I can talk about things I like" or "I can talk about things that are low stress" or anything like that. Because it's sure stressful to explain adrenal crises to people who are repeatedly being 'but why do you have an endocrinologist you don't have diabetes' and I sure wish my body didn't require this sort of management.

But it does.

And that includes how my speech works. In part because of ways I grew up and the scripts I was taught. In part because of that being how my bodymind works as a whole. Just because that's how it is for me and that not being understandable doesn't change it is real.

I have automatic speech with complex discussions about temporal lobe epilepsy (despite not being epileptic, this isn't "if it's about my diagnoses" it's more complicated than that).

I don't have automatic speech that can help my basic needs get met.

Automatic speech is complicated and scary and not nearly as good a thing as people make it out as. It's also a thing which will in this situation mean I manage to trigger 'hey treating you like a colleague'

Because that's the only speech I have reliably.

Every. Use. Of my speech including answering questions like "what's your birthday?" To trying to talk about interests. From trying to navigate safety to trying to have fun. From trying to do what I want to trying to do what I need. Except. Complex discussions where I am explaining medical topics in depth using highly technical terms. Hits unreliable speech.

I'll be saying nonsense that isn't true. And at the same time talking about current medical research in conversant manners completely accurately.

Sure hard to notice the rest is nonsense when a conversation about cutting edge research is the other half of what's going on with my speech.

Sure hard to keep from using speech that says random things in these contexts.

I'll have people assume I'm capable of things I'm not over and over. And that's terrifying and that's dangerous and I won't be able to tell them this either because that involves communicating better than I can.

Because spikey skills are spikey

But the spikiness is so very specific I can't even explain it in terms they can understand.

Don't have any kind of good enough synchronous communication for that. The explaining my own access needs isn't a thing that I can reliably explain. Even with my AAC. Have been putting long hours into improving my ability to do this and it's still a challenge. Sure am assumed to be able to do that.

I don't know how to get across to anyone what I mean by the dichotomy of it being so protective and so dangerous to have my only reliable speech be highly technical medical topics. And automatic.

In part because I don't feel like I can get across to so many people what this kind of conversation is at all.

It's the ones where I'm not fighting to keep from using jargon so people just look at me like I have no clue what half of what you just said was. After telling me how much they relate and try to purposely talk to doctors like they know what they're talking about. I don't do it purposely.

Purposely is a strategy. It's a good one. I'm not talking about a strategy.

I just speak like this. I don't know how not to.

And it's dangerous.

Because then you assume I Can Speak.

And even in medical context sure I can explain in depth how this list of symptoms is signs of these complications.
Can't use speech to report the symptoms whether or not I'm directly asked.

It doesn't make sense to people when I explain how I will have discussions with doctors about gluamate and potassium and then similarly will report that I have no migraines. (I have med resistant chronic migraine. I have diagnosis of intractable migraine. I am on SSI for migraine this is enough of a nonsense statement to be recognized as a nonsense statement. It's also a nonsense statement I've actually made in a medical setting before.)

What I can do is so specific and so treated as incredibly unusually skilled.

Can do this thing that gets me treated as more human.

And it's the only thing I can do. Still can't follow through to getting my needs met. And people still assume they are. Since why would I let them not be getting met.

Don't have enough supports for that. Can't get the supports. Supports are for people who need them. Not someone who is as capable as me.

But I will be treated as so much more human and that is life or death too.

It's safety and being safety makes it wedged further and further into my brain.

It's dangerous and danger makes me want to get across to anyone how very dangerous it can be.

But I'm just. Once again.
Told that spikey skills are normal and not have it seen that my disabilities go for extremes here too just like everywhere else.

Just see how far you can get between when you need the most and the least support or between what people see as those two states. How extreme are your extremes. Try to make everything be extreme. That's my bodymind and it's tiring how not understood that is.

Medical situations are so different than anywhere else they're understood to be harder for speech for some people. They can be easier too.

And sure ask why when that's the case. The fact I have the information at all comes from somewhere. the fact I have the automatic instincts come from somewhere the fact that I am able to do this comes from somewhere. The fact I feel like I need to comes from somewhere. The fact it happens this automatically comes from somewhere. And getting that response of "oh I understand you" response when looking through my diagnosis list and medical family history list, is totally a thing that happens for real reason.

But that doesn't change that I have communication access needs. That doesn't make it affirming to talk about how much other people need things that I don't in front of me when I need those things and I can't ask for them because you're moving too fast for me to type. That doesn't make it safe to argue with me that I don't need a support person. That doesn't make it acceptable to label physical medical responses that could have sent me to the emergency room as mental health because of me not being able to communicate in the moment because of being denied those same communication supports I was saying I needed. That doesn't make it okay to say I'm One Of The Good Ones in ways that both deny the humanity of the people I care about and deny me what I need in order to make it easier to stay safe.

It's yet another form of the nobody gets help. We're too disabled and not disabled enough at the same time.

Pick whatever you want right now to dehumanize. Pick whatever you want in order to claim supports are unnecessary. Go from there. Always too disabled. Always never disabled enough. Always both at the right time.

It's dangerous and its safety. Its terrifying and its something I'll actively say is something that being able to do protects me and those I care about. It's something that scares me so very much and its something that I don't know what I'd do without. It's something that denies me so many things I need and its something that helps me in ways I don't have anything else helping me. Because its not actually one thing even for things like unreliable speech and the terror of being denied the care you need for life threatening disabilities. And at the same time, wow that is terrifying to actually give as a real life example like its not actually a big deal because that's just how life is.

It's the having unreliable, intermittent, insufficient, and exhausive speech, and this one situation and topic being reliable, won't change the intermittent, insufficient, and exhausive aspects, but between the speech trauma that taught me I gotta speak if at all possible, and the decades of scripting that (successfully! and usefully!) I was taught for medical situations I have very automatic speech that turns on and gets me stuck. It's the I'll sure end up in these situations where I'll discuss complex medical topics and not report any of my symptoms, and you'll not notice I haven't because you'll assume I could use speech to communicate and I can't yet I've once again trapped myself in using speech rather than my AAC. It's my own history making dangers more dangerous. It's my own bodymind combining in ways that make things weirder and more complicated and being more misunderstood.

Being only able to reliably speak sometimes has so many impacts no matter how much that 'sometimes' is. Being only able to reliably speak in some situation and having that be in a situation where it'll have a huge number of assumptions made about you, has so many impacts positive and negative. Being only able to reliably speak in some situation and having it so automatic to do so, is terrifying.

People don't understand speech sometimes and not other times. People don't understand speech that sometimes says what you want and other times might or might not say what you want. People don't understand the 'sometimes' and the 'maybe' and the 'okay but how about now'. People sure don't understand insufficient speech and getting acrosss only the tiniest bit of what you wanted and it being assumed to be everything.

And yet. Those all need to be taken into account. Starting from 'oh, and medical sitations are the exception. Because of course they are. That's just how it works with a bodymind like mine. It's the rest of my masking that isn't pain. It's just life.