“I’ve always felt out of the loop”

 Sara Wilson, 26, lives with autism spectrum condition, which was formerly known as autism spectrum disorder. She shares her story.   

I remember the day very clearly. I was in a shopping mall, alone, listening to music through my headphones while trying to buy clothes. Suddenly the lights, the noise, the people all became too overwhelming, and I had a complete emotional meltdown. I had to call my mom to collect me.

Later, I thought to myself: “Gee Sara, that was so autistic of you”. And suddenly a lightbulb went on. After conducting my own research, I told my mom I thought I might be on the spectrum, and asked if I could have a formal assessment.

Diagnosed with autism spectrum condition

A psychiatrist who specialises in neurodivergent patients gave me a thorough questionnaire, tests, and a take-home assessment. She also interviewed my mother.

Neurodivergent refers to people whose brains function differently from what’s considered typical, including conditions like autism, ADHD, or dyslexia. Autism was once referred to as autism spectrum disorder, low- or high-functioning autism, pervasive developmental disorder, or Asperger’s syndrome, but is now known as autism spectrum condition (ASC). When she diagnosed me as a classic case of ASC, it was a relief. I almost felt like I needed a certificate to prove I wasn’t some freak of nature or a terrible person!

I was 19 years old at the time – and I finally understood why I behave the way I do – and why I struggle in certain situations. I think women who battle with mental health issues are often dismissed as suffering from anxiety when there is actually a lot more going on.

Social difficulties and exclusion

In primary school, things were relatively easy. I had friends, and I’d often spin in circles for ages, and random kids would join me out of interest – if they came into my orbit, I would engage with them.

However, when I got to high school, I always felt out of the loop. I simply wasn’t on the same wavelength as my peers, who all thought I was weird. Obviously, this wasn’t great for my self-esteem, and I remember feeling incredibly uncomfortable as a teenager.

When it came to socialising, I couldn’t read emotional cues and would say inappropriate things. I don’t have a mental boundary of what to speak about and what not to. That would result in being suddenly excluded from a friendship – and I became tired of dealing with the constant strife.

I’ve been an avid online gamer since childhood, and I made several online international friends as I got older. As a teenager, I also sought out people who shared my interest in alternative music and fashion. It helped that most of them were older, and they laughed off my eccentricities.

Sensory and hygiene issues

I’ve always struggled with bright lights, crowds and noise. Sunlight feels like needles on my skin, and certain textures and foods really unsettle me. For instance, I don’t eat fruit – the idea of biting into it is repulsive.

I also find personal hygiene exhausting. I can’t bear the transition from dry-to-wet-to-dry when I shower; and I can’t stand the feeling of wet hair. I also struggle with executive functioning – scheduling appointments, dealing with paperwork and returning messages are insurmountable tasks.

Although my psychiatrist didn’t initially medicate me, she did later prescribe an atypical antidepressant, as I wasn’t sleeping well and was depressed (an atypical antidepressant treats depression by affecting brain chemicals in a different way than usual medications).

In addition, I went to counselling for two years with a psychologist connected to a neurodiversity network, and it was very helpful. I know occupational therapists also work with autistic people, helping them manage daily life and find coping strategies.

Working life challenges

Today I work as a marketing assistant for a small boutique. I have to be creative with my day-to-day functioning, but my team works remotely so I don’t have to see most of them face to face. Still, it would be ideal to work from home full-time, because I’d have more energy at the end of the day.

I’m usually exhausted after constantly having to monitor what I say in the office. I feel as if I must put a mask on when I’m at work or in public – and it’s really draining. I have no surplus energy to do anything in the evenings – including going to gym, seeing friends, or even mundane things like housework and cooking. Luckily, I live with my boyfriend, who helps with these chores.

Early childhood signs

My mother remembers me being an extremely observant baby, who looked at everything very intently, but didn’t really interact. She connected with me through reading, which I loved. We’ve since realised that my dad, who is a talented artist, is also autistic. My mom says we’re both “magical” and “enigmatic”. While it can be frustrating to connect with us, she says our talents, intelligence, and unique perspectives keep her intrigued.

ADHD (attention-deficit/hyperactivity disorder) and ASC are different conditions that often occur together. They share some symptoms, like trouble with attention, social communication, and sensory processing, but each has its own unique traits. I was also diagnosed with ADHD this year and I’m currently working with my psychiatrist to find the right dosage for my medication.

Looking to the future

I am no longer concerned by how others perceive me, and I can shrug off awkward social situations. I’m just sad that I wasn’t diagnosed in childhood – if there’d been an earlier intervention, I could have protected myself more and had more support and understanding from others. I’m also aware that my career prospects might be limited. Advancing in the corporate world means networking and I don’t have a clue of how to do that.

I’m not trying to speak for every person who lives with the condition. Everyone who is on the spectrum has different abilities and experiences.  I do think people need to have more understanding and grace when it comes to dealing with neurodivergent thinkers as we’re bound to mess up more often than neurotypical people.

To find a mental healthcare professional near you, go to www.mediclinic.co.za