Being diagnosed with autism changed my life – for the better
April Hollingworth discusses how an autism diagnosis can act as a catalyst for positive change and empowerment.
April Hollingworth discusses how an autism diagnosis can act as a catalyst for positive change and empowerment.
I was diagnosed with Asperger’s Syndrome, a type of autism, when I was 38 years-old, for me this diagnosis was a relief, simply because I could now understand myself better.
For example, I learned why switching from one task to another felt unnatural and in job situations near impossible. I also understood why sounds felt amplified and overwhelming, such as when a group of people are all talking together. It feels to me as if they’re shouting and their voices echoing off of every surface.
I learned why my sense of smell is heightened, which can affect me in shops, especially in the detergent and deodorant isles. Those smells linger with me well after the person has left the shop, making that section cloying and hard for me to enter, leaving me feeling as if I’ve been sprayed with fifty different scents directly into my face, making it almost impossible to breathe.
There are many preconceptions about Autism Spectrum Disorder (ASD) that are seriously wrong and can be damaging to a person who has it. For instance, when someone finds out I’m autistic they might say:
“You don’t look autistic are you sure you have it?”
Yes, I’m sure I’m autistic and have the letter to prove it. Autistic people are not born with a tattoo across our foreheads stating we are autistic. We look just the same as everyone else.
“Is there any medication to cure you?”
Autism is not a disease. So no, there is no medication for it to ‘cure us’ of it.
“I know someone who is more autistic than you are, so you’re fine!”
Every Autistic person is different, you might find strong similarities between one autistic person and another, but there will be differences. This is why it’s called a spectrum. Also, and this is a very important point, it will depend how well the autistic person masks. (I’ll explain later about masking).
“Autistic ‘meltdowns’ are an excuse for bad behaviour!”
No, far from it, a meltdown is not fun.
“Autism is caused by something the mother did wrong when the child was in the womb!”
No, autism is not caused by anyone. It is how our brains are wired and this is why autistics are classified as neurodiverse.
“Autism is caused by the baby having immunisation injections!”
No, it most certainly is not. Nothing ‘causes’ autism. Autistics are born autistic, you can’t catch it, it’s not contagious and you can’t be given it either.
“I wish my autistic child had cancer so that they can be cured or die.”
Yes, you read that correctly, there is a book written by a father of two autistic children that wrote this! Being autistic is not a death sentence, does it make us different, yes but that’s not a bad thing. Everyone is unique and every autistic is unique from each other too. This is why it’s a spectrum – not a one for all.
“You must be good at maths if you’re autistic?”
No, in fact I’m terrible at maths. Autistics normally excel in a certain thing because they have a deep interest in it. I excel in the written word. I love reading, history and writing. I’m an author and have always been fascinated by different genres and certain aspects in history and the supernatural. Whereas for subjects that don’t hold my attention, my brain switches off, goes for a holiday and forgets to tell me. My interest isn’t there, so my brain doesn’t see the point in retaining that information.
What is a meltdown?
Well instead of telling you what a meltdown is, I’m going to help you understand it by getting you to imagine what exactly it feels like.
Imagine you’re in a situation and you feel overwhelmed.
Now, amplify every sound around you by eighty percent. This includes electronic sounds, cars, people talking, music, your own heartbeat. Bring in the scents around you, you won’t want to because your hearing is already distressed but bring them in anyway.
You’ll have the smell of food, sweat, grass, car fumes, deodorants and perfumes, oil, and other smells depending where you are at the time. Once you have those smells rack them up to seventy percent.
Now this is two external factors that are amplified and affecting you. So, let’s move onto your next one, skin contact. Your skin will become aware of every fibre touching it – this is why autistics are particular about what we wear. Certain textures can aggravate us and feel constrictive, every fibre that touches our skin, especially during a meltdown, can either sooth or hinder us.
If the item is soft, it can give us a sense of comfort or even be one less obstacle taken out of the path of a meltdown, whilst rough tight clothing can add to our distress. The jeans that were comfortable a moment before? Those fibres are now itchy, the button is now digging into us and the nickle it’s made of is aggravating.
The top you are wearing now feels like it’s constricting your throat. You try pulling it away to help you breathe, but whilst this is going on an external contact can come about from another person. This is something you can’t control. You can choose what you wear to control how the clothing feels against your body, but not what another person is wearing or even what scents they use.
And now on top of everything else your chest is tightening. You can’t breathe because your lungs feel as if they can’t work, your body is feeling weighted down and you have to do something, your brain is screaming at you that you must do something now!
Your hearing and sense of smell have now increased to one hundred percent. Panic has set into your mind and body, it is all consuming and devastating, you must take control of yourself before you collapse or tailspin out of control completely. Your anxiety has skyrocketed, and nothing is making sense anymore.
Congratulations, you have now reached meltdown status.
Masking is one of those things’ autistics learn to do from an early age. It’s not always a conscious effort, but it does take a strain eventually. Autistics mask so that they can adapt in a world made for neurotypical people.
A way to think of masking is like this. Imagine you walk into a room filled with people, they’re all talking about different things and laughing at jokes. You don’t understand the joke though. Your brain can’t see what’s funny about it but, instead of standing out you chuckle along with everyone else feeling completely alien and bewildered, yet your expression will reflect that of others so that you fit in and don’t draw unnecessary attention to yourself.
Now you wander into a different room and there are different social key points happening, but you don’t know what they are. It’s like someone handed out the how-to guide to navigate the world and forgot to pass one out to you. So, you’re constantly trying to figure it out and it’s not as if the social etiquette stays the same; nope, that would be too easy, instead it constantly changes. Everyone is getting their updates, except you.
Reading this might make you wonder if this makes autistics ‘fake or deceivers’, the simple answer is no, it most certainly doesn’t.
Think of how you are when you travel to somewhere different and the rules of the place haven’t been explained to you. If you get them wrong though, there will be serious consequences.
So, you try and traverse through the rules and regulations as best as you can, without causing offence or unwanted attention directed at you. Does this change who you are? No, obviously it doesn’t, this is exactly the same for autistics except everyday we’re having to do this, eventually this causes a strain on our health and we can tailspin into depression.
This is why quite often the autistic in your life might take time out for themselves, which might last from a few minutes to a few years, depending on how much we need.
Life for me as an autistic
For me, finding out I have autism has been a blessing. As I mentioned earlier, I have learnt why certain things affect me the way they do and why I find certain situations almost impossible to traverse. But it’s also made me realise my own potential.
I didn’t do well in school, I was informed by a career guidance counsellor that my dreams of being a writer were ridiculous as I’m not smart enough, so I was advised to think about what shop I want to work. This, as you can imagine, affected me substantially.
Even with the encouragement I received from my family to get my poetry published, I believed that was pointless. As the words of the guidance counsellor bellowed in my head, “you’re not clever enough!”
I sent off some of my poetry and won Best Irish Poet Award for my poem “Don’t Morn the Dead.” But I still didn’t believe in myself.
I started writing more poems and made attempts at some stories (which I still haven’t finished), and in 2010 I finally self-published my book of poems, called Different Kinds of Emotions.
It took another few years, for me to start following my dream of being an author though, but once I did, I became happy in myself. Now I have a trilogy (The Candi Reynolds Series) and a short novella (Be Mine: A Candy Hearts Romance) published through The Wild Rose Press publishing house and am currently writing my next series.
I’ve finally, after 25 years, realised I’m not stupid and can achieve anything that I decide to do. The only limitations I have, are the ones I place in front of me. My school career guidance counsellor made an assumption about me due to the difficulties I had, but those assumptions impacted my life in more ways than anyone ever could have imagined.
I doubted myself. I doubted my talent, my interests, my very passion for research, history, and creativity. Even with the encouragement from my family, I still doubted I was smart enough, capable enough or good enough.
Once I was finally diagnosed, I was able to re-evaluate myself, I looked at my achievements – such as becoming an author, something I was informed I was not capable of – and I wondered, what else can I achieve?
I found a course I was interested in, by pure accident, and applied for it and was accepted straight away. That course was Journalism in the Digital Age, which I followed up with a course in Radio Broadcasting, both of which I passed with distinction.
I’m now getting ready to head off to university to study for my BA (Hons) in Media Production.
This is why I believe being diagnosed with autism is a blessing for me. With my diagnoses I have been able to understand myself and make changes in my life that I never would have thought I was capable of.
This is why it’s important not to put limitations or assume things about others. You don’t know how it will affect them and what it can prevent them from achieving. Being different, thinking in a way that is different from the norm, is not a bad thing – far from it.
Presumptions are one of the worst things in life, they can hold people back, prevent amazing things from happening and destroy wonderful potential connections because someone assumed something about someone else.
Life is short and too precious to be ruled by someone else’s prejudices.
Born in Dublin, before moving to England for a time, April now lives in West Cork.
When she was a child she fell in love with books; amazing stories filled with mystery and intrigue, danger and fantasy. A love which has progressed into a passion. She also likes photography and cemeteries, the older the better.
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