Autism Wellbeing are excited to announce that our Making Sense App is preparing for launch very soon! Those of you who visited our stand or listened to our presentations on Sensory Trauma at Autism shows across the UK last summer, might have seen the app in use. We thought you might be interested in the back story. It all started at the beginning of the Covid-19 pandemic. One of our directors, Emma was taken to hospital with a high temperature, hacking cough and difficulty breathing. This was back in April 2020 and the world was only just beginning to prepare for the upheaval the pandemic would bring. Emma will share more:
Sensory overwhelm in “hospital”
I arrived at the hospital and instead of the familiar carpark, buildings, and staff, I found an enormous marquee. The type you'd see at a wedding or grand garden party, and certainly not what I was expecting at the hospital.
I was already feeling uneasy and unwell, and like many people who experience interoception (those internal body sensations that include pain, hunger, emotions etc.) in a muted way, I knew something was wrong, but I couldn't say exactly what or exactly where.
I was told to enter a small building attached to the marquee and I was told I must come in on my own. At that point, I did not know where I was going, what would happen, or whether I would even leave!
Inside the building I remember several things very clearly:
It was very white and bright
It was very noisy with fans and bleeping machines
The material of the tent kept flapping and making a terrifying noise that was unpredictable and drowned out all other sensations
None of the staff looked like people - they were in full protective gear including masks, visors, gloves and overalls - I could only see their eyes, and like me they looked terrified
I recognised my growing overwhelm and I did not know how to communicate this to anyone. The only indication that the staff were people and not robots were their eyes - but I did not feel safe enough to make eye contact with anyone. I felt as if I was drowning in fear and any other sensation that I may have previously been able to notice or describe, became unreachable. My heart must have been racing, but I didn't notice it. My temperature was feverish, but I didn't notice it. My ears and then my whole body was filled with the bleeps and whirring fans and the deafening sound of the material of the makeshift clinic as the wind ripped against it. I could not pick out the individual words of anyone speaking to me, and with their mouths covered any words they spoke were unrecognisable and lost against the background of my rapidly increasing overwhelm.
There were other patients in the marquee. I could tell they were patients because they wore ordinary clothes and weren't walking about but were instead sitting or lying down and occasionally coughing. I was coughing too. I knew that a doctor wanted to speak to me because they had leaned over me. I tried to speak but my brain would not make sense of what was in my head and refused to engage my tongue, mouth and lips. It was as if all the muscles in my body had gone on strike, and it was too noisy and bright for me to be able to consciously instruct all the various parts of my body involved in creating meaningful speech, to engage. I felt even more scared and I can’t remember much else.
A week in bed
I recall talking with one of my colleagues at Autism Wellbeing and they – or maybe it was me – described my hospital experience as traumatic. My illness wasn’t particularly traumatising for me. The trauma came from the noise, bright whiteness, and inability to connect my brain and body to make meaningful speech. I had a letter from the hospital stating I had been treated for covid symptoms, and I was resting back at home in bed. I am not someone who spends much time in bed. People who know me will recognise that I am a “do-er” and always on the go. I was too poorly to be up and about though, but back in my home surroundings with my noise-cancelling headphones and weighted blanket, I felt the need to “do” something now that I was able to self-regulate and tap into those parts of my brain that can communicate and problem solve.
Like many autistic people, I am a practical problem solver. I reflected on my hospital experience and wondered what could have improved it. I recognised that I would have benefitted from some direction and input to become regulated. The sensory environment was intense, unpredictable, and totally new – all things that can add to potential overwhelm. The co-regulating presence of the staff that you might typically find as a patient, was not available. The staff were also experiencing a new, unpredictable, and intense environment, and one where they were on the frontline, risking their own health and lives to save others. The second issue I set about solving, was the one of my inability to use speech when overwhelmed. As the pandemic progressed and we heard stories of disabled people being given “do not resuscitate” notices, this concern became more important to address. What if I was on my own and unable to tell people what was happening for me? Especially when with all the sensory overload, I may not be able to even notice or describe what I was feeling.
I decided to put my week in bed to good use. I considered that an app could be useful if I ever found myself in that situation again. Even when admitted to hospital, I was allowed to take my phone. If I could create an app that offered tips for self-regulating, including very direct tips for those times when you don’t feel ok, bit don’t know why, then it might save me and others from such overwhelm in the future. I reasoned that if the app had a section that could be customised and shown to doctors (or train conductors, or shopkeepers – or whovever else may come across an overwhelmed autistic person) then it might support better communication too.
There was one problem….
And it was a big one!
Unlike the stereotypes of autistic people as technical geniuses, I have absolutely no technical skills in app building or computer programming. I can do what I can do, but that’s it. I can use basic office software like word and excel, but only for things I have been taught and nothing more. So I thought I had better learn, and what better opportunity than when I had to stay in bed with nothing to better to do.
Again, like many autistic people, I have a talent for focusing on things I am interested in. I will dig deep and learn all I can. I either know nothing about something, or I’m an expert. So, I set about learning to create an app. I had the prototype ready within a couple of weeks, but it sat on the back burner while Autism Wellbeing worked on our Sensory Trauma paper and presentations and our many other commitments like the Autism Code of Practice audit; our social care workforce training; bespoke workshops; talks to professionals and community members and creating our free booklets and resources.
The Covid-19 pandemic changed the lives of everybody, and for Autism Wellbeing, we used the opportunity to create free resources for autistic people, their families and professionals. We developed more than 100 resources, including tips for coping with changes due to the pandemic and information about face coverings or attending a vaccination centre. We loved how we could be responsive to people’s needs, and our position as a CIC (community interest company) meant we had the autonomy to read the news in the morning and have an information sheet distributed on social media by the evening. In fact, we were awarded a local accolade as a Lockdown Loyalty Legend!
Autism Wellbeing Membership
We recognised that this way of working where we could support lots of people with the real issues in their lives was rewarding for us on a personal and professional level. We are a non-profit organisation that is committed to providing services that are useful, valuable, and accessible to as many people as possible. Earlier this year we developed a membership scheme that enables people to access online courses, a toolbox of resources, forums, and discounts on our products. It felt the right time to come back to the app and we have sought input from a developer who kindly gave us some time free of charge to look over it.
Meeting families, individuals and professionals at the Autism Shows in Manchester, London and Birmingham back in June, assured us that the app had the potential to be a useful resource for our members. I have spent this past weekend tweaking the functions, proof-reading the text and getting things ready for a launch date.
We are an organisation that welcomes feedback and we look forward to hearing what works and what could improve the app - or maybe other ideas that could be developed into an app for autistic people.
If you are not a member yet and would like to join, please visit our website
The app should be launched to our members this week! Keep an eye on our social media and website for more information.