Presented at CSUN 2017 on Thursday 02 March 2017
This article is a summery of a presentation i gave at CSUN in San Diego on the 2nd of March 2017. I am extremely grateful to the BBC who allowed me to present this session alongside my BBC commitments.
My slides are quite minimal and visual, so the aim of this article is to explain the slides so they make a bit more sense.
This talk is not science, its my account of how i use technology to support my independence. It’s anecdote and i only speak for myself and not all autistic people.
The Oxford Advanced Learners Dictionary defines Magic as:
The power of apparently influencing events by using mysterious or supernatural forces
This is a good definition but in my mind it’s also a good definition of non autistic people (aka nuerotypicals) from an autistic perspective.
To me, NT’s seem to have some form of Magic. They can see things i cannot and they have a near supernatural ability to interpret signals which i can see but do not understand.
The wonderful great late sci-fi pioneer and all around awesome dude Arthur C Clark said:
Any sufficiently advanced technology is indistinguishable from magic
He is right, Magic and technology are two sides of the same coin, they are related concepts.
In a nutshell, this talk is about the technology which enables me to access some of the Magic that NT’s get for free. There’s an interesting equivalence. Nuerotypical people use technology to do some of the things i find easy (e.g. Maths), and use use technology to do some of the things that NT’s find easy (e.g. Recognising people).
This talk covers 4 areas.
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. I love the artwork on this slide, one of my friends made it for me.
I work for the BBC and this slide shows some of the products i work on, for example BBC iPlayer, iPlayer Radio, BBC Weather, BBC News and Children’s BBC.
My career was going pretty well, I’d lived in supported living and i knew i ‘had autism’. I also know that my job was to do my best to hide the autism and to be as normal as possible. Masking my autistic traits was what people around me rewarded.
I found it exhausting and the mask was incomplete, but I preserved for many years. I even owned my own home at one stage.
However, i got ill. I couldn’t keep up the mask and i hit burnout hard. The stress and constant anxiety had given me gallstones and other digestive issues. I was still able to speak but very ill. I had chronic pain for 10 months and almost died waiting for the operation to save my life.
The operation went well, however, i reacted badly to the anaesthetics and i lost my speech. When i woke up, i had lost all the "progress" i had made in the 10 years since i lived in supported living.
My support network collapsed and i was forced to move across London to stay with friends, then eventually got a flat nearby so they could support me. Suddenly, i was looking at living alone for the first time. Independence wasn’t something I’d planned for. It happened when it had to because i didnt have any other options.
This time, I wasn’t going to mask. I now understand that i am autistic, the issue is not me but my enviroment and the attitudes of others. To have my independence i would need to modify my enviroment to meet my needs, not to develop a whole new fragile mask.
The first technology i needed was the ability to communicate. I’d had speech issues before so i already had some Augmentitve & Alternative Communication (AAC) apps on my phone.
The main AAC app i use is called proloquo4text. It takes what i type, reads it aloud and displays it big on the screen. This was to become my primary communication medium in face to face contact. I use it on my iPad, my iPhone and my Apple Watch.
I cant always use face to face apps. Even when i do they are slow and clunky. Instead, for paid support i used iMessages and provide an iPhone for the carer to use.
For my friends, we use a telegram group called the "herders". The herders are all the friends who came together to support me. They are the people who had been helping me for years and where used to "herding" me when i was traveling with them.
Twitter was extremely important. As i grew to understand myself better, i understood that i needed to find other autistic people. To learn from and share with. On twitter i found the #actullyAutistic hashtag and made friends. This provided lots of social contact.
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 technical 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 technology comes into play.
The purpose of the technology is to aid me in the independence process. It is a tool.
After i moved it was hard to find formal support. Social services where useless. Instead i had to find alternative support options.
The web helped saved the day! I managed to find people who could help my friends to look after me by looking on findababysitter.com. We found a wonderful SEN teacher who was happy to pop in for a few hours an evening and help me get through my routines.
This provided an essential bridge while the formal services took time to catch up to meet my needs.
Another challenge was that my enviroment was overwhelming to me. Perhaps ironically, the loud noise of a normal fire alarm makes my body freeze up and makes me very muddled. The Next protect is a smart smoke alarm. It instead speaks in a clear voice. It also contacts my friends to tell them if my fire alarm has been triggered.
The nest protect helps me to feel reassured when i am home alone.
My Apple Watch also helps me to be reassured. I have preloaded it with all of my routines, Apple Pay and various apps to help me manage what i drink and when i use the loo.
I also have an iPod touch. It’s a cheap £139 device which is like an iPhone without the phone part. I use it for many things.
Part of keeping my autonomy is maintaining my ability to work. Without being able to speak we had to change our approach to team communication.
We found we had to be equal. At first we had Skype calls where everyone apart from me used speech while i used text but it didnt work.
With Slack, we are all equal and it works much better.
I also use the voiceover screen reader to give me information about the things i am reading and interacting with. I find having information in a audible and visual format helps me to understand it.
I am not disabled in and of myself. I have impairments (such as impaired speech, and impaired sensory filtering) but i only become disabled when my environment is badly designed.
The environment disables me, not being autistic. This was a key understanding for me.
I use technology to control my environment and therefore stop it from disabiling me.
I am not someone "with autism", i am an Autisitc person. I am complete and whole, i just have a different but equally valid set of needs.
The hue lighting system helps me to control the lighting in my environment. I have a number of presets which help me. For example, i have a low level purple preset for the evening, and a brighter (but not bright!) energising preset for when i am getting ready for work.
Being able to control the light levels in my environment gives me control and in turn allows me to be less stressed and tired.
Technology is not just electronics, it can also include clothing. One of my favourite possessions is a Squease sensory vest. It is an inflatable vest made using spacesuit like materials. I often feel as though i am floating apart and the pressure helps me to feel all in one piece.
I have a review of the Squease vest.
My plantronics headphones help reduce the impact of loud environments. They feel like the most magical technology in my life. They have more computing power than my first PC and they use it to listen to the enviroment and cancel out loud noises before it travels the distance between the microphone and my ears. Super impressive.
I will never be nuerotypical, just as others will never be autistic. However, we can both use technology to acces the magic of each other.
Technology is an enabler for me. It enables my communication, autonomy, environmental control and ultimately my independence.