Updated: Nov 18, 2021
We speak to Viktoria about her experiences caring for a child with autism through her volunteering work. How she coped after developing chronic fatigue syndrome (CFS), and her valuable advice to those struggling with ill health.
Interview with Viktoria Venkatess, by Elizabeth Beh
My experience as a carer
Since 2016, I have been volunteering at KEEN London. KEEN is the only charity in London offering free one-to-one support for children and young people with disabilities, through providing sports sessions. Before the pandemic, our sessions took place in a sports hall. Each participant was paired with one or two volunteers. Anyone can volunteer and no previous experience is required – I started when I was 17.
I first met Jack* and his family at KEEN when he was 5 years old. Jack is autistic, has limited verbal communication, and loves tickles! I was often paired with Jack and when I wasn’t, I advised whoever was paired with him. This regular contact with Jack, allowed us to establish a strong rapport with each other. To such an extent, that his parents asked if I would like to work for them as a carer on an ad-hoc basis.
Jack is now 11, and he is inquisitive, energetic, and extremely affectionate. He enjoys running around, exploring his surroundings, and especially loves playing with water. Our KEEN sessions involve a lot of running, playing with sand or water, and lots of tickles! He has grown immensely in the time I’ve known him, both physically and developmentally. He is much calmer, progressed with his speech, and engages with me more.
Since my initial work with Jack, I tell him, “It’s okay, it’s okay” as a method of soothing him whenever he has a meltdown. At our recent session, when Jack was overwhelmed and having a meltdown, we noticed that whilst he was crying, he would say to himself, “It’s okay, it’s okay”. I’m not sure if he was using the phrase to self-soothe, or if it was just a phrase he associated with me, but it was tremendously heart-warming. On another occasion, during a park trip, Jack wanted to play with the water fountain but I was leading him back to the playground. As I said previously, Jack loves playing with water. Amusingly, he held my hand, said, “It’s okay”, and tried to lead me back to the water!
Each autistic child is unique
It is a common misconception that all autistic children are similar and thus they must be interacted with in a certain way. Just like all people, autistic children have unique traits and interests that make them who they are and shape how you should interact with them. For example, if you share a common interest with them such as animals, talk about that. If they love jumping, jump with them!
It is helpful to educate ourselves on autism, to understand how it may affect social interaction and how it may cause certain difficulties to arise. For example, knowing about sensory overload and that many autistic people avoid eye contact. If you are working with a young child, ask their parent or carer how their autism presents. Some people are hyposensitive to sensory stimuli such as touch or sound, whilst others are hypersensitive. Whilst there are common traits within autism and it does influence who they are, every autistic person is an individual and should be treated accordingly. It is useful to have some knowledge of autism to understand the individual better, but you should then approach them as you would approach any other child. Treat them as a person not just their diagnosis.
“I promise you interacting with a disabled person is not something to be afraid of.”
I think people don’t necessarily hold negative views towards disabled people or the disability itself. I think many are worried the disabled person is so different, that they would find it difficult to interact or relate with each other. The truth is that yes, you may have some differences, but you have differences with every single person you meet! Ultimately, you probably share more similarities than you realise. While it is important to recognise and respect the difficulties they experience because of their disability, I would say to focus on who they are as a person and realise there is much more to them than their disability. This brings me on to discussing my disability.
Adjusting to life with chronic fatigue syndrome
In 2017, during fresher’s week of my first year at university, I developed a bad case of strep throat. After a two-week course of antibiotics and one week of being healthy, I caught it again. I was then treated with another course of antibiotics, and at the same time, had some other health issues and medication changes. My GP now speculates this entire incident, alongside starting university is what caused me to develop chronic fatigue syndrome (CFS). Due to ill health, I had to suspend my studies in November 2017 and took a year out to get a diagnosis and treatment. In September 2018, I returned to my medical degree and struggled all year with CFS. My symptoms included joint and muscle pain, frequent migraines and headaches, nausea, fatigue, sleep issues, brain fog, and memory loss. Medicine is a highly demanding course and did not allow me sufficient time to rest and take care of my health. Especially since I was still adjusting to life with the condition and learning about my symptoms. I ended up failing my exams because of memory loss. During revision, I would be unable to remember the topic I had revised the day before, let alone the actual content. On the exam day, I forgot how to spell basic words that I’ve been using for most of my life.
This resulted in me changing paths and starting psychology in 2019. Psychology is much more suited to my strengths, as most of my assessment is essay-based rather than relying solely on exams. Thus, I can work around my symptoms and make the most of my good days. I have been able to find more balance, and focus more on my strengths rather than my difficulties. It has also now been three years since I was diagnosed with CFS. During this time, I have been learning about my symptoms, their triggers, and how to manage my condition better. I have a mild/moderate case of CFS. Whilst day-to-day life is difficult and I have to limit my social activities and hobbies, I am still able to continue my education and work. However, I am unable to take on typical retail or hospitality jobs, as I cannot be on my feet for long periods. Also, committing to shifts is difficult with the unpredictability of CFS. Instead, I rely on other forms of employment such as tutoring, video captioning, and I am also working as a research assistant. I still volunteer with KEEN London, do care work with Jack, and am also the branch coordinator for KEEN Southampton.
Advice to others struggling with ill health
I was told by my GP at the time, “It’s only January, we don’t need to rush to figure anything out since you’re only going back to university in September”. Many doctors do not treat CFS with the same respect they would other conditions. Some don’t even believe in the condition. There is no test for CFS; it is diagnosed by ruling out other conditions such as lupus, rheumatoid arthritis, or Lyme disease. After doing hours of research and speaking to my mum and staff at my university, I came to the conclusion of CFS before my doctor did. I printed out the diagnostic criteria, highlighted the symptoms that applied to me, and showed it to my GP – only then was I taken seriously.
“Advocate for yourself.”
Though I acknowledge it’s easier said than done, try to focus on your capacity and capabilities, not those of your peers. At university, there’s an expectation that you’ll have a great social life. But when I returned to university after my suspension, I attended a total of two social activities for the entire academic year. Because I didn’t have the chance to make friends, I didn’t have any social support whilst at university. It was incredibly lonely, but it’s what I had to do to keep up with my studies and take care of my physical health. However, it affected my mental health. Whilst being an introvert made it slightly easier to deal with the isolation, everybody needs social support. Luckily, I have been able to make some friends now that my studies are less demanding.
“It’s taken me three years to get to a place of acceptance and to develop the ability to focus more on my strengths than my difficulties.”
I spent three years comparing myself to who I was before getting sick. Before CFS, I could read something once and remember it. Now, I sometimes read a chapter of a textbook and I can’t remember the topic let alone any of the content. Before CFS, I could study or work for hours on end without breaks. Now, I need to schedule naps and time away from screens. It has taken me a long time to accept my capabilities are different now and that I will likely never have the same capacity that I once did.
“However, my empathy and attentiveness have not changed – these are the qualities that make me who I am, and are essential for my line of work.”
If anything, being disabled has made me more empathetic and attentive towards other people’s struggles. I know that I’ll never lose those strengths.
I’ve always been known as the “mum friend” - the person who will contact you regularly, look after you when you need it, and check you made it home. It’s always been in my nature. Even as a child, I looked after the younger children and wanted to help wherever I could. If you’re reading this and have similar traits, I’d suggest looking into care work. So, you can utilise your natural abilities and personality to make a difference in someone’s life. Nurture those traits and use them for good.
* Name of child has been changed
Note: It was decided to use the terms ‘autism’ and ‘autistic’, as these are the terms preferred by UK autism community members (link to study).