Living with Autism: my story

Posted on: 2 April, 2024

This week marks World Autism Celebration week. To raise awareness, promote acceptance of the condition and help others understand it better, Josh Hallsworth shares how it impacts his daily life.

Hello, my name is Josh, and I live with a lifelong condition known as Autism Spectrum Disorder (ASD). Thankfully for myself, I am not alone in this, as approximately 700,000 other Autistic people are living within the UK.

I’m very happy and comfortable in letting people know that I am Autistic; however, I often find myself becoming uncomfortable in actually discussing how it impacts my daily life. I sincerely hope that the following article produced by myself will help others understand Autism better, whether they are neurotypical or neurodivergent, or even people who may suspect that a loved one could potentially be Autistic, which could lead to them seeking a diagnosis.

I was only diagnosed with the condition approximately 6 months ago at the age of 25, and I can honestly say that I truly wish that I was diagnosed at a much younger age, for the benefit of my studies, along with my personal life.

What is Autism?

Autism Spectrum Disorder is a neurodevelopment Disorder, which in all honesty probably doesn’t mean an awful lot to many of us! I find it quite hard to understand the actual definition of Autism, however, I found a simple explanation which explicitly stands out to me, which is that:

‘An Autistic person may think about, and experience the world differently to most neurotypical people. As a result of this, a person living with Autism Spectrum Disorder may behave differently to most other people in certain situations, however, this should not be classified as a weakness, as in fact, it can be the complete opposite.’

I will be covering each of the ‘superpowers’ associated with Autism Spectrum Disorder, and their personal effect on me. In some areas, I would class myself as being like a little mouse, whereas, in other areas, I am as big and as strong as the Incredible Hulk (not physically; I am much more aligned with the mouse).

A further note I would like to add is that even though this article has been produced by a student for his fellow students, this article doesn’t just cover the impacts of Autism on my studies, as I am more than a student – we all are. This condition doesn’t just impact my studies – it’s more than that, and as such, this is about the daily life of a person with Autism.

Difficulties in social communication and social interaction challenges

Many Autistic people have difficulties understanding both verbal and non-verbal language, such as tone of voice. Some Autistic individuals are non-verbal, while others have limited speech. Some Autistic people have excellent language skills. This diversity exemplifies why some Autistic individuals feel misunderstood, given the wide range of symptoms across the Autism spectrum.

Many people associate Autism with minimal output and social awkwardness: for example, Forrest Gump. However, I am quite the opposite; I never seem to stop talking. In fact, sometimes I have to remind myself to breathe! I prefer to focus on the positive aspects of Autism. I believe that my social enthusiasm (fancy way of saying ‘chatterbox’) benefits me in many ways, particularly in my studies and in the workplace. The ability to engage with anyone about anything has opened up work opportunities for me in the past and has helped others settle or gain the support they need in their studies. This aspect of my personality feels like my “Incredible Hulk” mode.

Repetitive and restrictive mode

Now, this one is my Achilles’ heel; this is my mouse mode. For many Autistic people, the world is confusing and sometimes scary. To counteract this, many Autistic individuals like to strictly follow routines to feel safe. As dramatic as it sounds, if I do not adhere to my routines, I feel like I can’t function or work to the best of my abilities. This can significantly impact my mental health and work output. However, these behaviours bizarrely possess some positives, as they boost my attention to detail and my ability to meet deadlines due to my high commitment to following a strict routine.

Over- or under-sensitivity to senses

Most neurotypical people usually possess the ability to find a middle ground. For example, they may set the brightness on their laptop to 50%. In contrast, a person with Autism is more likely to swing from one extreme to another. They may have their laptop screen at either 10% or 100%, due to being either oversensitive or under sensitive to light.

In my case, I can’t stand silence. If I were to work in a silent workplace, I would end up feeling extremely anxious and might start rapidly shaking my leg, which can irritate others. However, if there’s some background noise, such as from a radio, I feel much more comfortable, which positively impacts my mental health and productivity. Small adjustments for Autistic people can make a huge difference in the workplace, such as allowing them to select their preferred desk position, which will benefit all parties involved.

Highly focused interests or hobbies

Now, this aspect of Autism sums me up. I am well-known for being extremely passionate within my areas of interests and hobbies. In fact, you could say I get extremely obsessive, to the point where I can stay up all night and day researching things that interest me. In regard to my personal interests, alongside being a big Manchester United fan, I actually own and maintain a 780-liter reef tank with coral and marine fish (yes, I own a Dory and Nemo). I suppose you could classify it as an unhealthy obsession, considering the amount of time and money I have committed to my tank. However, this hobby encourages me to express my emotions and vulnerabilities.

I am a person who struggles to express my emotions in terms of showing my loving and affectionate side, alongside empathy. But when it comes to animals, especially my pets, including my Cane Corso X Bullmastiff dog, I am extremely caring and affectionate. In fact, I tell my dog at least once every hour when I am with her that I love her. However, I struggle to express my affectionate side to people, including my friends, previous girlfriends, or my family.

My hyperfocus on specific subjects and tasks can actually have great positives for me in regard to my studies, as I will put 100% effort into every single assignment, and I will deeply analyse all of my work. However, that can lead me to strive for perfection, which is something that doesn’t exist. Once perfection isn’t achieved, this can leave me feeling quite dejected at times. My hyperfocus can also lead to Autistic burnout, which is certainly not something that I enjoy!

Extreme anxiety

Unfortunately, a large portion of Autistic people suffer from extreme anxiety. Now, this is something I hate discussing, but part of any progress requires me to be upfront and honest with others. Half of the battle is just acknowledging the issue. Anxiety can play many tricks on the mind; it can make you believe that you aren’t worth anybody’s time of the day, that you aren’t good enough, or even lead some people to feel like their life isn’t worth living anymore.

I first started showing signs of anxiety at the age of 8, and I still suffer from it now at the age of 25. I have learned to accept that it will never leave me – however, I have also developed and am still developing vital skills in how to control it or live alongside it.

Anxiety triggers our fight or flight response, and whether we like it or not, this is actually something we all have – we can’t live without it. If we didn’t have our fight or flight response, there wouldn’t be anything to stop us from walking out in front of a car. But many people, including myself, experience anxiety on different levels.

Anxiety has deeply impacted my life in various negative ways. Once, my anxiety was so severe that I was unemployed, spending 14 hours a day in bed, which made my life quite miserable. Elevated levels of anxiety through Autism have made me lose relationships, jobs, and a part of myself at times, while also impacting my concentration levels, which negatively affects my studies.

Once again, I would like to end this on a positive note, which is why I am speaking out. The more we talk, the better we feel, and the more we understand each other. If we sit in silence, nothing will change or improve. Anxiety has provided me with thoughts such as why my family love me, why my friends are still my friends, and why people invest their time in me. Some of you reading this may feel the same way now, but one question I have for you is this: What would you say if one of your loved ones said this to you? I am extremely confident that you would be able to tell them about their worth to you. So why are we different to them? Why would you be less important or as loved as them?

Meltdowns and shutdowns

A meltdown occurs when an Autistic person gets overwhelmed by their current situation, resulting in a temporary loss of behavioural control. When this happens to me, I can get quite loud and fire out a lot of swearwords. It can be embarrassing at times, as people tend to stare and negatively judge you. However, it doesn’t come across as it seems; most of the time, I am swearing at myself for making a mistake in my work. I usually burn myself out after about 5 or 10 minutes and then act like nothing has happened. Unfortunately, when it happens to me, it can be HR’s worst nightmare. This is why speaking is so important; it’s vital for allowing people to understand you.

Shutdowns occur when an Autistic person shuts down, resulting in the person going quiet. This may lead people to falsely believe that the person doesn’t care; however, it’s the complete opposite. This is something that I don’t actually suffer from myself.

The issue with Autism is that there is a lack of understanding throughout society, due to the large diversity within Autistic individuals. Autism can affect each individual in completely different ways. I may share specific traits with some Autistic people, but I may be completely different in other ways. Comparisons to figures like Isaac Newton, Albert Einstein, and Charles Darwin, who were Autistic like me, so we must all share the same high IQ level… Okay, maybe that is a joke!

On the other hand, Autism can also provide you with a high set of skills, which in return can guide you to success in many different avenues in life. Personally, I struggle with creativity. I can’t draw very well at all, I can’t follow floor plans at all, and I am absolutely dreadful at designing things. However, figures like Michelangelo, Vincent Van Gogh, and Leonardo Da Vinci, who were all Autistic themselves, weren’t too bad at that, were they?

I promise I am finally finishing this entry now, but I would like to say that sometimes I do wish that I wasn’t Autistic, and that the difficulties that I encounter didn’t impact me at times as much as they do. However, in life, all we can do is see the positives within ourselves. Different outlooks can help us be unique. We learn to live with the cards that we have been dealt; it just seems like my deck of cards contains a few too many ‘Jokers’.

If you are looking for support in your studies because you have ASD; please email disabilitysupport@ucem.ac.uk and we will be able to assist you. Below are some useful resources regarding Autism:

• National Autistic Society (NAS): The NAS is the leading UK charity for Autistic people and their families. They provide information, support, and services, including helplines, online forums, and resources for individuals, families, and professionals. Website: National Autistic Society
• Autism Helpline: The NAS offers a helpline where you can speak to trained advisors who can provide information and support on Autism-related issues. Helpline: 0808 800 4104 (Monday to Thursday: 10 am to 4 pm, Friday: 9 am to 3 pm)
• Autism Alliance UK: Autism Alliance UK is a network of Autism charities and service providers working together to improve support and services for Autistic individuals and their families. Website: Autism Alliance UK