Autism spectrum disorder (ASD), as defined by the NHS, is the name for a range of similar conditions such as Asperger syndrome that affects a person’s social interaction, communication, interests and behaviour. It is a condition more common among males, and it is estimated that one in a hundred people in the UK are on the autistic spectrum. There is no cure for autism. It is a lifelong condition that individuals learn to cope with, meaning symptoms may diminish over time, but the condition remains – it will never leave you. I am a young adult with autism. I struggled throughout my childhood as a result of autism, and it comes as a surprise to some that I struggle because of autism.
“You’re autistic, wow! Honestly mate, I knew you were quirky but I would never have known.”
This shock may be because I buck the trend in that I am rather sociable – I have friends and make conversation with relative ease. A lot of individuals with ASD enjoy their own company, and feel severe anxiety socialising with others. For instance, Cosmo, 23, a civil engineer and Birmingham graduate said: “I’ve certainly made a few faux paus on the social side!”
Autism is rather misunderstood – it is a complex condition with numerous symptoms that can be expressed in many ways, but one must remember not all individuals with ASD will have the same traits. This was well summarised by one interviewee who said: “No two people on the autistic spectrum are the same, you certainly cannot put us all in the same boat. While there are traits that run through us all, it is ridiculous to think all autistic people will behave in the same way.” Individual differences still exists among autistic individuals, however, there are certain qualities which are prevalent among most with autism.
There tends to be an obsessive trait that runs throughout all those with ASD – a hobby that turns a passion, and in many cases becomes all-consuming. Mine is sport, in particular football, and more specifically Chelsea. It has become part of my identity. Ask me about anything about Chelsea’s 1970 cup winning team side, or any small detail about the dismal division two team of the 1980’s and I’ll bore you with all the information. I collect memorabilia, too. Everything about my love for Chelsea is excessive and at points in the past, it has become a distraction, and detrimental to me carrying out daily functions. I am certainly not alone in this, as the interviewees of this article will testify.
Alex, a recent graduate, was late to be diagnosed with Asperger syndrome – not finding out until he was 18. His obsessiveness shows itself through his love for rugby, which he also says goes beyond most people’s love for a sport. He asserts that rugby has provided him with an identity and refereeing has given new-found confidence he previously lacked.
“I talk about rugby way too much, but it gives me something to talk about with people – I’m told I always steer a conversation towards rugby chat, even when it’s not relevant! It has got me involved in social groups and helped me improve my interaction skills, and been a good tool for meeting people”.
Cosmo is a self-confessed train nut, travelling the country looking at them. He says that it took over his life during his second year at university, and impacted upon his degree: “My doctor recommended that, and social media be dropped temporarily as they were being prioritised at the expense of my studies. It is difficult to find the optimal balance and switch off from your passion.”
Those with autism tend to like familiarity, and become anxious with change, especially sudden change. For instance, Alex said: “I don’t like last minute plans. I like definitive rather than flimsy, vague plans. It frustrates me when friends say they’ll let me know, as that does nothing to ease my mind.”
Throughout my formative years in compulsory education, I found there to be many provisions in place to support me through the turbulent times I experienced. But, when you hit eighteen, society seemingly expects you to have learnt all you need to know in order to survive in the real world. People move onto university or into the workplace and the expectation is that you are well on your way towards full independence, but this isn’t the case for us all.
I wanted to be ‘normal’, and in many ways, I was. I got a full set of GCSE’s, left college with three A-levels, and moved onto university. I wanted to look after myself, party, attend all social events and lead a normal university life. But I am different. Not very different, but different nonetheless. I had to make small adaptations so I could manage, and accept that I would not gain full independence as quickly, or smoothly, as my peers.
The transition from dependency to independence has sped up in recent times. While I was once embarrassed of this, it is now not an issue in my mind. I accept that I am different, I embrace my difference. I wasn’t at the same stages of social development as my friends throughout adolescence, but I’ve gone some way to catching up now. Life for young adults with autism can be tough, we are not all able to self-navigate our way through it, instead needing guidance others don’t need. Whilst I am not at the end of my journey, I have made considerable progress.
However, while we will always suffer from autism, having spoken with many on the autistic spectrum, they concur with my experience, that the symptoms lessen over time as one learns to manage with their condition in better ways. Cosmo would not attend social events in his younger years due to suffering severe anxiety, but has increasingly learnt to deal with this, to the point it is no longer a problem.
“There was a time when I would avoid social events, but certainly not anymore, I’ve actually surprised myself with the amount of events I’ve gone to at university and at work.” Another individual (interviewee X) says he used to struggle with social encounters, but this has not been such as problem since he was around 14. He said: “I tried hard to get on with everyone, and despite not intending to, I’d find myself upsetting people or saying something wrong. I always found myself in challenging situations where I wasn’t getting on with people – I was young and didn’t wander around trying to upset people, but was making issues for myself without meaning to. Now I’m fine, but it took longer for that socialisation process to really start with me.”
Sabrina, a Surrey university graduate stated: “I was always thinking in a different way to everyone else. I struggled at school in terms of mingling with other students, I was far less outgoing than most, and had many awkward encounters!” She has since progressed during her three year spell at university, and now in the workplace. She says she still suffers anxiety and awkwardness, but forces herself out of her comfort zone in order to develop and enhance her social interaction skills. Nonetheless, she still carefully plans the night in advance so she can mentally prepare for it. At a recent work dinner party, she chose thoughtfully who she would feel most comfortable sitting next to.
Communication was once a major obstacle for me. I was unable to understand jokes or idioms, inept at reading people’s facial expressions or body language, and would often make inappropriate comments without realising, which landed me in trouble at school.
Upon entering a year 8 French class late and becoming distracted, the teacher bellowed across the classroom: “Pull your socks up, Jamie”. I followed orders and proceeded to roll up my trousers and lift up my socks. Similarly, upon preparing to start the lesson, my geography teacher asked if I had my books with me, to which I responded “YES”. Again, this was not well-received, as I later found out that she was insinuating I get the books out of the bag and onto the table. Teachers soon figured out I took things they said literally, matter of fact. This is something I spent considerable time working on, and it is now not as much of a problem. This is a problem Sabrina also worked to overcome. She says she has no filter, is straight-forward talker, and once asked to be invited to her colleague’s wedding which made for a rather awkward encounter.
But at what point do you reveal to someone, if they haven’t already figured out, why you’re not quite the same? How well must you know someone in order to open up to them about your diagnosis? Some believe its best to be honest with people about it from the start, as it makes people may act with more empathy and understanding towards slightly strange behaviour. Others prefer not to mention it, for fear of being judged or treated differently.
Cosmo is open about his condition. He said: “When I started university I said to myself I’m going to be honest, no holds barred, and explain to people. I’m fairly comfortable talking about it openly”. He goes onto say he doesn’t worry what others think, and doesn’t fear being treated negatively as a result of his autism admission, and has found people to be understanding and empathetic, going the extra mile to ensure he is accommodated. “When I told my line manager, he went out of his way to make sure I was included and settled into the company.”
Conversely, others have taken the opposite approach and not told those around them due to fear of being judged or treated differently. Interviewee X said he was not happy about his diagnosis, and felt concerned people would shoot him down when he spoke, simply because of his autism.
“I don’t tell people unless it is relevant as I think they won’t value as much what I say. If I disagree or have a different point of view, it will be because of the autistic label – I’ve seen that before with others, and I felt bad for those on the end of it. I certainly don’t want people to change how they interact with me or view what I say or think, on the basis of some label. I take others on face value, and I want others to do the same with me, not prejudge me because of a label attached to me.”
Alex was also of the same mind-set for a long time, and didn’t tell anyone about his ASD for around three years, but in recent months has opened up about it and says it helps people understand when he displays signs of anxiety or behaviour deemed odd, whereas if they didn’t know, they would frown upon it.
We have progressed a lot in the past decade since the days when I struggled most as a result of autism. There are now autism-friendly screenings at all the UK’s major cinema chains, and many schools sign up to help students and colleagues better understand ASD, as part of Autism Awareness Week. Yet some people with autism still refrain from discussing it or telling those around them. While every individual has the right to decide whether to tell others, it is sad some feel unable to for fear of being unfairly judged. As one interviewee said: “You can be ashamed or embarrassed of an action, but not of how you’re born or who you are.”