#expensive speech

From Lance McLemore (@loudlampman on IG), an autistic AAC user with severe apraxia. Excerpt: "Speech impairment exists on a spectrum like blindness or deafness. There are many reasons why a person could have significantly impaired speech: autism, cerebral palsy, stroke, traumatic brain injury, ALS, Rett syndrome, etc. I’ll use myself as an example. My speech is impaired due to severe apraxia. I understand everything that is said to me. I know what I want to say, but it’s very difficult to make the muscles involved with speech do as I wish. As a result, sounds come out distorted, some sounds are substituted for others, some sounds or words are dropped entirely, and suffice it to say, it’s a big mess to most listeners. I like to compare my speech to the electrical system in a house. Imagine that an electrician wired your house with wire that was a smaller gauge than necessary. If too great a power demand was placed on that circuit, it would overheat and cause the breaker to turn off. This connection between my brain and mouth is fragile. I might be able to say a two to three-word sentence, but anything longer gets less and less intelligible. And I have to exert ever more energy to keep talking. After some time passes, my speech completely breaks down, most of my energy is gone, I can’t really concentrate on anything, and then I have to be left alone to recover.  I’m sure this sounds peculiar to the average person, and they have trouble relating. For the average person their speech is stable over time, and they cannot understand how speech quality could fluctuate so much.

I’ve tried to explain this to people, but it seems like it usually causes confusion and misunderstanding. I say to them, “I use a communication device because my speech is difficult to understand.” A response I have gotten is something like, “you can go ahead and talk. I’ll be able to understand.” It’s as though they see it as a challenge. I might try to explain the fatigue it causes me, but then I am seen as being too lazy to make the effort to talk. Believe me when I say that a lazy person would not use an AAC device. My remaining speech is not adequate to meet all my communication needs, and I know many other AAC users are in the same position. Please don’t give me and other people like me grief for using a communication device. There is a reason we choose to use AAC. It wouldn’t make sense to use it if we could just say it with our mouths. Communication is difficult enough already, so don’t make it more difficult with your erroneous assumptions.  You cannot assume that just because we might talk some of the time that we should be able to talk all the time. Remember that one application of AAC is to augment remaining speech. We shouldn’t have to stress ourselves out and push ourselves to the point of mental and physical exhaustion just so we can use a method of communication that is unclear and unreliable. I’m well aware that an AAC device makes people uncomfortable, and it’s often slow and awkward for the listener. However, we have to use the communication method that works best for us.

In conclusion, I have a few words for other AAC users who might be reading this. You have the right to decide how you communicate. Whether you choose to speak, type, gesture, or a combination of methods, you must do what is best for you. Don’t be ashamed of your communication tools, and don’t let anyone bully you into using something that diminishes your ability to communicate. If you find that speech is useful at times, then use it. And then at other times if AAC is better, then use that. I know it’s easier said than done, and I have to admit I still struggle with it. However, acquiescing to the bullies is worse."

Day 18 : Why do you use AAC?

PT: Day 18 : Why do you use AAC? End PT

Speaking verbally is very difficulty for me in multiple ways. Often, when I try to say something, I end up blurting out something completely different, or I’m only able to say part of what I wanted to say. Sometimes my mouth is only able to make noises or use delayed echolalia to verbally express myself. Speech is tiring and it often takes a while for me to get the point across using only mouth words. These struggles are significantly exacerbated by stress, sensory overwhelm and anxiety. Frequently I find myself so overwhelmed that I can’t speak at all. AAC helps me communicate and get what I need no matter what difficulty I may be having.

Note: I will be using the language and terminology that makes sense to me, if I use a word I am not allowed to, please let me know so I can educate myself on the matter and remedy the post

I have a complicated relationship with oral speech.

It ranges from ‘eloquent enough to pass’ to ‘completely absent’. Leaning enough to the latter that I was granted a publicly funded speech generating device- something apparently rare for adults with just about any level of oral speech capacity. Most of the time it’s somewhere in in-between. And it’s those in-betweens of the two extremes that I want to discuss here.

My oral speech tends to fail me in many ways. Sometimes it seems as if there is a disconnect between my brain and my mouth, something came unplugged and now the signal can’t travel. Sometimes my brain is so fogged over I can’t even think of the words, much less broadcast them to my mouth. Sometimes I speak but I don’t have the words to say everything I want to say, and what comes out is far simpler/less encompassing than what I intended. Sometimes I try to speak and the wrong words altogether come out, word substitutions that don’t even make sense in that space.

And sometimes? I can speak, but the very thought of doing so exhausts me. I can force it in those cases, but it drains me, so i typically choose to use a less costly method to communicate what I need to communicate- maybe noises, gestures, sign language, my AAC, whatever works.

I discussed this with my therapist- feeling like an imposter, choosing to not use speech when I technically can. She related it to movement- most able bodied folks technically can walk a mile to a grocery store. But most of those same folks, if they have the privilege of a choice, would rather choose not to. They would drive, or take a bus, or get groceries delivered instead. Does that make them an imposter? No, they’re just choosing to spend their energy in a different way.

PT: I am talking with mouth words on the phone right now. I am starting to get expensive speech but I don’t know if my CBoard will go through over the phone well. End PT