Autism Awareness Day
Hi I’m Elinor, I’m the current Head of Recruitment and general day-to-day ‘sorter-outer’ here at SENNIES HQ!
If you’ve been keeping up with what we’ve been doing here at SENNIES, or you’ve been in touch with us, you’ve probably had a chat with me! And one thing you may not know, or didn’t realise from our interactions, is that I am Autistic.
April 2nd has become a day for celebrating and promoting ‘Autism Awareness’ or as some people in the community prefer ‘Autism Acceptance’.
As a specialist childcare agency, our primary focus is on finding fantastic, experienced, child carers - or ‘Sennies’ as we call them - for families with children or young people who may require additional support. A lot of the children we work with here at SENNIES are Autistic, and so cultivating a better understanding and increasing knowledge of Autism is something that we are incredibly passionate about. Because of that, I wanted to share a little about my own personal experiences on this important day!
What is Autism:
I’m sure if you were to Google ‘What is Autism’ you would be met with a whole flurry of different categorisations. Or perhaps you have been through the diagnostic process with your child and have been given one doctor’s version of ‘Autism’.
Autism is what is known as a ‘spectrum’ condition - this means that there are lots and lots and lots of different ‘traits’ that each Autistic individual may or may not experience. If you have met one Autistic person - you have definitely not met them all.
Fundamentally, Autism is a neurological condition that has been mostly linked to the prefrontal cortex, which is the part of the brain that is responsible for our day-to-day functions. It is not a disease. It cannot be cured. It won’t go away. It’s just our brains. This makes us ‘neurodivergent’, and someone without a neurological condition would be considered ‘neurotypical’.
I personally think ‘Neruodivergent’ is a very cool term and it makes me feel like the protagonist in some kind of epic comic book or sci-fi movie.
Autism is also linked to social, behavioural, language and sensory issues and difficulties. But as a spectrum condition, autistic individuals may or may not present in such ways.
A spectrum is not a linear scale where people can be placed at one end or the other, ‘severe’ or ‘mild’ - it’s a big, bold, colour wheel, and many Autistic people are fighting to have the ‘categorisation’ of ‘levels’ of Autism removed as they can be potentially very damaging and misinforming and can ultimately lead to much bigger issues down the line.
For example a person labelled as ‘mildly autistic’ may not be given access to the support they need as they are perceived as being ‘normal’ or ‘not as deserving’ - this can include children being denied educational health care plans all the way up to adults not being able to receive certain, vital disability benefits or healthcare. Similarly, someone labelled as ‘severe’ might viewed as entirely ‘incapable’ or ‘unable to understand anything’ - this can massively impact on their quality of life and potentially stop a person who is absolutely capable of self-expression or academic pursuits from being able to fulfil their potential due to a lack of correct support.
Why we need to raise ‘awareness’ and promote ‘acceptance’:
When meeting or speaking with me, you might label me as someone who is 'high-functioning' or 'only a bit autistic' however often in day to day life things occur that can lead me to become: non-verbal/selectively mute, unable to move, emotionally dysregulated, incapable of controlling my speech or volume and making loud noises, usually when I am struggling to process things that are going on in a distressing situation- which is all part of my autism but isn’t really conveyed by the term ‘high functioning’.
I have a personal example of a time where, as an adult, I experienced difficulty due to lack of understanding.
This story involves travelling, something many neurodivergent people can have trouble with as there are lots of transitions, variables and other factors that are out of our control. I was due to travel up north (My homeland!) where I was booked onto a crowded, oversold train where there were no seats and little to no standing room, it was like a central London tube at rush hour, only with more people! There were also a lot of excited, loud and drunk people on the train as there was a particular sporting event happening at the final destination (I shan’t stereotype people by saying what this was as we are, after all, promoting NOT applying stereotypes and tropes to groups of diverse people!) As an Autistic person who is a verbal communicator, I tried several things:
1. I first asked some of the people around me if they would mind offering me a seat as I am autistic / disabled
2. I asked the people behaving inconsiderately next to where I was sandwiched standing up, if they could be mindful of the people around them and mind their volume and language
3. I asked the train guard if they could suggest if there was anywhere quieter on the train and why the train had been allowed to be oversold as this was entirely inaccessible for disabled people and families (I saw a family having to stand in a cramped aisle with 3 children and a buggy)
To put it politely, I received no positive response to any of the above. Not one person even acknowledged me with a response even when I was visibly distressed, the group I spoke to laughed at me and shouted louder, and the train guard acted as though this was entirely normal and I was being unreasonable.
I made the decision to remove myself from that environment - but this left me incredibly overwhelmed, frustrated and quite honestly; scared. I knew that my ticket was only valid for the service I had, had to take myself off, and I didn’t have enough money to purchase a ticket for another train and I didn't want to 'break the rules' by getting on a different train and facing a fine. Not getting on that train also meant I would be late to my final destination. So not only was I processing the horrible situation on the train (which honestly, any person would have found awful!) but all of these other elements too.
Distressed, I took myself off to the ‘Assistance and Customer Services’ office, which is meant to aid disabled people like me. It took all of one sentence out of my mouth to realise none of the people in this office had any idea, training, or understanding of how to deal with any disabled person.
I expressed that: I was struggling, I am autistic, I’d had to leave the other train, and I asked whether I could use my ticket on another service given the service had been overbooked and if someone could help me with acquiring a seat and finding the correct platform to board the next service.
I was met with two blank stares. No information and no assistance.
This inevitably led me to become overwhelmed with anger and sadness. At 25 years old, I rang my mum, bawling loudly down the phone (my brand of autism isn’t particularly self-conscious but even this felt dehumanising and embarrassing). I could barely speak, I couldn’t breath, I was panicking that I was either going to have a catastrophic meltdown or end up becoming a danger to myself or others.
Eventually, I was approached by a team member, who offered me some tissues and gave me a bottle of water. This small act of kindness helped me immensely. They then asked what the problem was - I explained. They enquired about the train platform to their colleagues and then they walked with me to the platform where they introduced me to the train manager and explained that I am autistic and had a difficult time on the earlier service. The train manager then took me to a seat in the quiet zone right by her little cubby hole and said they were just there if I needed anything.
The above exchange took about 5 to 10 minutes out of that person's day, but had a hugely positive impact on mine.
Whilst the tale ends with a comforted and calmed young woman, it could have easily ended very differently. I spent the remainder of that train journey trying to pull myself down off the ceiling, trying to navigate my conflicting emotions between hating myself and/or hating everyone else around me, and trying to mentally prepare for the rest of my day as I knew I would be very tired and very on edge.
Imagine if the first person I spoke to had more understanding or awareness of autism (or indeed any invisible disability) how differently that entire scenario could have unfolded?
The thing is - that situation I described above, is not a problem with me, but a problem around how the rest of the world is still unable (and sometimes unwilling) to adapt to people like me.
Autism cannot be easily defined. We are not pieces of a jigsaw that need putting together or who are short a few pieces to be complete. Autistic people are navigating a world that wasn’t necessarily designed with them in mind, but we are human beings who can become important and active members of society, who can have families, friends, own businesses, entertain and in some cases, change the world. We are everywhere, you just might have to look a little harder to truly see us.
I consider Autism to be a disability and identify as disabled. I find this empowering as it allows me to challenge people's preconceived notions of what ‘disability’ is. To me it is not a negative term, however the negative implications of my disability do need to be heard and understood, so that I can be supported through them and continue to be the hard working, creative and compassionate person I am.
So if you can, spread a little awareness today, and every day. Every small interaction that challenges and changes peoples preconceived notions of what Autism and other neurological differences 'looks' like, is a big step forward!
(All opinions stated in this blog post are not affiliated with SENNIES and are the views and opinions of Elinor Fortune, the author of this post. Elinor is an active advocate for disability and autism awareness and works professionally as an actress as well as being a member of the SENNIES Team)