My history with speech is pretty complicated. I often go very long periods with little to no speech. Entire years sometime pass between spoken words.
The phrase that I like is that my ability to use speech is unreliable. I am often able to speak, but not able to communicate using speach. Other times, on the right topics, I can speak well enough to host podcasts and go on international speaking tours.
This post is a deep dive into how my speech seems to work. What the patterns are, the tools we use to help me to communicate and some of the things I wish I understood when I was younger.
Lets start with where we are today.
At the moment, early 2021, I am able to use my speech to communicate most days and most of the time. I often have less speech in the evening and I never have much speech during stressful things like visiting the dentists or as my ADHD meds wear off.
This is partly because we’re in a lockdown. I don’t have much speech in most environments, but I currently spend most of my time in an environment where my speech can work well.
Once lockdown ends and I start going to the cafe again I’ll spend more and more time in places where I can’t use my speech much.
Most of my life is engineered so that speach isn’t needed. For example, in work we use slack and can have conversations in text or via a call.
The same is true when I am out and about. I can use my AAC, or occasionally sign language, to communicate my needs and wants.
We don’t treat speech as special. I am not ‘having a bad day’ if I can’t talk. It’s just kinda an accepted part of being Jamie.
My speach works best when the environment is right. The following aspects all effect my speech.
The most important thing we focus on is communication. Can I successfully make other people understand me and the message I want to share.
I use lots of tools to help me to communicate. They all work differently and I pick a tool based on the context I find myself in. Context for me is the combination of environment and situation.
For example: at home (environment) with a friend (situation) is a different context to at home (environment) with a support person (situation).
For all contexts my primary communication tool is an AAC app. Specifically Proloquo4Text. Depending on the context I may use AAC everyday for everything. Or I may go weeks without opening the app.
However it’s my primary tool because it’s what I default too. It’s where I start. Having AAC always accsessble and usabile is key for me. Knowing that speech is optional makes my speedh easier.
With freinds and in other contexts where it’s possible I also use sign language. I don’t sign full BSL or even makaton. I can finger spell single words and we have a few pre-agreed signs for things like ‘lion’, ‘drink’, ‘sorry’, ‘elephants’ etc. When I am most impaired / floaty / spaced out I need to keep sign exceptionally simple or I can’t use it.
Outside of the ‘communciation tools’ I also communicate using ‘off the shelf’ apps like telegram. My friends and I have a telegram group where we coordinate things.
Finally data is often communication. My heart rate data, or my location data often help me to communicate. Heart rate saya is partial. It doesn’t give context but it can still be useful. If I’ve been stood in the queue at the cafe on a busy day and my heart rate is over 140bpm that means I am stressed. However if I ran for the bus and my heart rate is high it just means I ran for the bus.
Location can also be communication. Sometimes my friends get sent a map of where I am with short questions.
For example a map showing me at the cafe or a shop with “what do you want”. Or a map showing me at a bus stop with the question “which bus”. I also sometimes send photos showing the location or choices I need then to make.
This is all useful communication. It just doesn’t use speech. It took decades to accept that speech wasn’t really very important most of the time.
I wish I understood about my speech much sooner. I had long periods without any speech but also without much communication.
If I was talking to my younger self I think I’d encourage younger Jamie to be more confident in using alternative tools whenever I wanted and too ignore any adults who where unsupportive.
Luckily by the time I was a teenager most of the major battles where done and I had my AAC and started communicating. This is how I ended up escaping supported living and building a carer as a developer and then an engineer.
AAC is why I have the life I have now. It’s pretty damn surreal from where I started.
I wish I had found acceptance within myself sooner, as that seems to be the biggest influence on if other people accept me. The more confidence I show using things like AAC, the less other people seem to care.
I’m going to wrap up with post with some thoughts on words I use to describe myself.
In the past I’ve generally used ‘verbal’ and ‘non verbal’. In the context I’ve lived in those terms don’t bother me because we don’t assign any emotions to them. However for other people those terms are a problem. I don’t want to cause other people trauma so I’ve been slowly changing my terms. Being mindful of the consequences of the words I use is important.
In recent years I have tended towards ‘unreliable speech & AAC user’. Though I am slowly getting comfortable with the terms ‘nonspeaking’ and ‘semi-speaking’. They are terms other people seem to prefer and I am starting to use them sometimes.
In day to day life I do not interact with anyone else with the same speech I have. As I interact with more AAC users I am getting more comfortable with the terms semispeaking and nonspeaking. It might take a while.
I’ve been meaning to write this post for ages and I hope it’s useful.
I am very comfortable with my ability to communicate. It not longer causes strong emotions when I can’t speak. I often don’t notice if I swap between communication methods. I just focus on the communicating bit and let the rest sort itself out.
I am lucky in that the tools I have are very effective and no one in my life is trying to remove them.
It may have taken almost 30 years but I feel like I am in a great place. I consider myself to be an effective communicator and that’s really the most important thing.
I am understood. That is what matters most.
