Shining a light on Autism
Agnes Chapman-Wills recounts her experience with an autistic sibling in light of World Autism Awareness Day
World Autism Awareness Day is on the 2nd April and it is a day that leaves me full of emotion. As a sibling of someone with severe autism, it is a poignant reminder of both the highs and lows that myself and my family have faced over the years. It certainly leaves me feeling reflective, and whilst I am grateful for the increased global awareness of the condition, I find myself asking: how can 24 hours encompass the experiences and consequences of an inherently varied and nuanced condition like autism?
My brother Eric is 16 years old. His disability, and his dependency on myself and my parents, means that we are incredibly close; in fact, I’ve always felt more like his parent than his sister. As a result of his diagnosis, my lifestyle has always been different to that of my peers and, mindful of the upcoming 2nd April, I want to shed some light on the condition and our life as a result. Autism is extremely varied and it can be hard for some families to cope. Eric needs someone to dress him, feed him, bathe him, put him to bed and take him to the toilet. He cannot be left alone and will never be able to do anything for himself. In short, he is very vulnerable and his disability has dramatically shaped my life.
Eric has the mental age of a four-year old whilst he has the vocabulary of someone much older. He talks to himself almost 24/7 and he has more love in his little finger than most people have altogether. He cannot hold a grudge, he doesn’t know about Brexit or climate change and he loves being outside in the sunshine or at the beach. Eric is the happiest 16 year old I have ever met as his disability means he is blissfully unaware of life’s horrors and, more poignantly, how vulnerable he is. Most amazing to me, is how unaware Eric will always be of the power he has over my life. Our ups and downs as a family are almost always due to him and, although I was angry at first, I now wouldn’t have it any other way.
Eric has provided us with some fantastic comedy over the years. For instance, several years ago, when on holiday in Croatia, we had arrived at the house we were renting and, within five minutes, Eric had urinated from the balcony and onto our neighbours. It was then made much worse when an old lady tried to explain what Eric had done and my Mum thought she was asking if Eric wanted to have a water fight with the old lady’s grandson. Eric constantly recites conversations he had when he was as young as four (including many that don’t paint myself and my parents in the best light…). He also remembers all of his favourite books, tricking many people into thinking he can read. Eric imitates my voice when he is about to do something naughty; for instance, he used to climb onto the kitchen counter, get an egg out of the fridge and start shouting: ‘Oh Eric. You mustn’t do that. That’s so naughty’ causing us to run into the kitchen to a cracked egg on the floor… These moments get less funny and more difficult to deal with as he gets older. At a Christmas party last year, Eric went up to a random man and started stroking his beard. Extremely luckily for us, Eric had chosen to stroke the nicest man in the world and he didn’t mind at all, but it is moments like these that leave me concerned for the future and the situations Eric could find himself in.
Eric is the sweetest boy I’ve ever come across. He’s more in tune to people’s emotions than you might expect and, when he hears a child crying, he always asks why they’re upset. Sometimes, when I’m at university and I speak to him on the phone, he asks me where I am and when I’m coming home. Eric can’t really express how he feels and, when he’s sick, instead of telling us he doesn’t feel well, he says: ‘I’ll feel better soon’ which always breaks my heart. His ability to trust and emotionally connect with people hasn’t faded over the years; in fact, just the other day, my parents gave someone a lift and Eric held her hand for the entire car journey despite the fact he’d never met her before. He tells us he loves us multiple times a day.
In addition to the funny anecdotes and the emotional moments, we’ve had our fair share of sad days. Eric used to scream for hours on end, would try and hit us and wouldn’t eat or sleep. We’ve had strangers shout at us, we’ve missed out on typical family experiences and we’ve been told by professionals that nothing can be done to help. Whenever we think of the future and its uncertainty, we’re filled with anxiety. In fact, the future is my greatest fear. Alongside potential careers and relationships is the fact that I will one day be solely responsible for Eric and it is terrifying.
However, where I was once angry about Eric’s diagnosis and my circumstances as a result, I am now more content with our situation. He has been a blessing on my life; he has taught me to utilise and take care of the working brain I have, to be kind and patient, and to be happy with the little things life offers us. I document Eric’s life on our Instagram page @theericchronicles and the positive reaction it has received has been very moving. Even my closest friends are shocked by some of the stories I tell illustrating how the hardships of the condition can easily go unnoticed.
Autism has given me a purpose in the world. It is the thing I am most passionate about and it has taught me that positive outcomes can stem from struggle. This World Autism Awareness Day, I urge you to think about Eric and all the families across the globe affected by this complex condition. Lend a helping hand to someone who may be struggling or going through it alone (and give @theericchronicles a follow. You won’t regret it).