Presented at CSUN 2017 on Friday 03 March 2017
This article is a summary of a presentation i gave at CSUN in San Diego on the 3rd of March 2017. I am extremely grateful to my employer the BBC who allowed me to present this content alongside my BBC commitments.
My slides are not very understandable on their own, i tend to use images and single lines of text. So the aim of this article is to explain the slides and to provide a version of the presentation for the people who couldn’t make it to the event.
The presentation starts with a slide explaining who i am and what i do. The normal stuff, i am autistic, i have a big lion plushie who goes everywhere with me and i work for the BBC.
The disclaimer is also important. I am just speaking for myself, my talks are anecdote not science. I am one autistic person, i don’t speak for all autistic people.
The next few slides are all designed to answer the question of what i mean by autonomy and independence. I wanted to get this clear before i get on to the techy bits.
I believe that independence is a process, its something you work towards with clear stages.
The stages are stability, autonomy and then independence.
Stability is the foundation, unless someone is stable they are going to struggle to make decisions about their life. Unless they can make meaningful decisions then autonomy is not going to happen.
Autonomy is the second stage, thats where i am able to make meaningful decisions about my life and then also have them happen. It’s probably not something i can do myself at this stage, but i can still make the decisions. For example, i choose all my own food, even though i need someone else to prepare most of it for or with me. That’s autonomy in action.
Finally, the third stage is independence. That’s where i am making decisions & able to carry out the actions as well.
For most things in my life, i am still working on the stability or autonomy stage of my independence and this is where the watch comes into play.
In all this talk covers, 4 areas where I use the Apple Watch. The areas are:
The first are is Communication.
Communication can mean a variety of things. I don’t normally have free flowing speech so to me communication means communicating with other people.
This section of the talk details how the Apple Watch facilitates my communication with various groups of people.
I use an app to generate most of my speech. This app is called Proloquo4text and its also available on the Apple Watch. I can preload the watch with a number of phrases and use them outside. I use this for ordering my food and drinks at the local cafe which is what i am doing in the photo.
This works regardless of if my phone is connectioned. Knowing i have a form of communication strapped too me is a hugely reassuring thing.
There are times when i must also communicate with others in an emergency.
Not all emergencies are the same size, so there is a variety of communication needs. At one end of the scale i can use the watch to contact emergency services and my friends. This is an inbuilt feature for the watch and is amazingly useful.
However, sometimes an emergency is a much smaller thing, for example, if i am trapped at the cafe and to spaced out to walk home. In these situations i use the the apps iMessage or Telegram to communicate with my friend and support network.
I cannot always communicate. Sometimes communication comes in the way the watch collects data throughout my day. I wil give some more concrete examples later, but for now i just wanted to draw attention to how the watch can help me communicate in ways which a non obvious.
The second part of my presentation was all about executive function. Executive function is the skillset of planning and following through with actions and intentions. For example, not getting muddled up.
One of the ways the Apple Watch supports my executive function is via the watch faces. I use them as modes as i do different activities within my day. For example, i have my default daytime mode on the left showing my health apps and routine and my "walking places" mode on the right showing my activity monitor, timers and a big button to play music.
These modes are very useful, they keep the tools and applications i need in easy reach and they form part of my day to day routines.
Routines are the foundation of my day to day life. I have structured routines to help me throughout the day and night. The routines are what allow me to be independent and are the vehicle of my autonomy. For example, while i may not always be able to follow the routine and someone will prompt me, i designed the routine in the first place. So even when they are prompting me they are actually helping me to control my own life.
On the watch i use the calendar function, paired with emojis to give me a large visual timetable and routine showing everything i have planned in the day. The rotating button on the watch (called the crown) can also be used to zoom back and forth to time travel through my day//
Another element of my routine is the ability to give myself reminders which are not fixed to a specific time. For example, going to the loo 2-3 times a day or walking 2000 steps.
To do this is use an app called streaks. It’s great for tracking my progress on daily goals and it has a watch app right on the watch face.
Part of having autonomy is managing my own money. The Apple Watch makes it extremely easy for me to manage my money and to spend it.
I use Apple Pay to spend money and I monitor my balance using the Nationwide app. I have a friend who also has access to my accounts and used to help me, but now i can manage alone. I find this much simpler than using the app. It also enables me to be confident spending my money as the months progresses.
Finally, the Apple Watch is strapped too me. Knowing i have the ability to travel on public transport or buy food whenever needed makes me far more confident. I don’t have to worry about loosing my wallet (or give it to someone else for safe keeping!).
The third area for the Apple Watch is health.
Earlier above i mentioned how we use data as a form of communication. A good example of this is using heart rate data as a proxy for how anxious i am.
This helped to explain why i was so tired after a night with a new carer before i was ready. I spent most of the night with a heart rate of 130BPM. I felt like I’d run a marathon the following day and from my heartbeat perspective i had.
Being able to keep track of what I drink and when i pee helps me to ensure i am not dehydrated and i get to the loo on time.
I use streaks to remind me to pee and waterminder to log my fluids. They share data with HealthKit and together they ensure i am well hydrated.
My brain needs more structure than many other peoples. My anxiety is not a disorder, it’s my brain telling me my enviroment is badly designed and i need to fix it.
We call the sense of anxiety i get "elephants" because it feels like and elephant is sat on my chest wearing high heel shoes. It’s a very difficult sensation to manage. You can read more about elephants on my blog
One way of helping when elephants strike is to put on some well known music. This brings structure into my environment and helps me to relax. The Apple Watch can be loaded with a playlist of music which makes this easy.
I can also load other sounds files onto the watch, for example verbal instructions or the sounds i like such as white noise or storms.
I have mentioned it a few times that having the watch physically strapped to me is a useful feeling. It provides a constant reassurance that support, communication and relaxation is with me. None of the bands seem great from a sensory perspective, but they are not to bad. I keep meaning to find something to balance out my other arm so I don’t feel so lopsided!
The the final way my Apple Watch helps me is my sense of connectedness. I am connected to others in my support network and beyond. This means i can take risks and i can make the most of the energy i have.
There’s a automotive phrase that a race car can only go as fast as it can stop. This is also true for my life. I am only able to use all of my energy if i know the penalty for misjudging is not catastrophic.
This is a new slide deck so i didnt know how i would be for time. I put a questions slide in the middle so if i was running slow i could end the talk early and i could also get a feel for what questions the audience had.
On the day, they asked to see the rest of the slides.
This slide is a basic pros and cons list of why i choose the Apple Watch. They are: