As lockdown drags on, autistic people like my brother are struggling to adjust
Autistic people in lockdown are having their routines disrupted and it's severely affecting their lives.
30 Jan 2021
Since he was born, my brother, Glodie, has never spoken – only hummed. He’s two years older than me and for much of our childhood, he’s always been the centre of attention because he needs constant supervision. He’s autistic and has complex learning disabilities. Although he’s physically very active and mobile, he has absolutely no sense of danger and requires close adult support to ensure his safety. Glodie is impulsive, strong, non-verbal, and prone to running off if given the chance. As well as this, he has a severe learning disability, speech, and language impairment.
Before the pandemic, he would spend most of his days at school or out exploring London with my father, but now, he’s locked up at home and struggling to come to terms with the fact he can’t leave the house. Being in lockdown with him has been tough, and it’s heartbreaking to see him struggling to enjoy life without his usual activities. I think he notices that something in the world has changed, but doesn’t fully comprehend what it is that’s stopping him from going about his days as he used to.
Glodie has always been cheeky, full of life, energetic, and had a bit of sweet tooth. He’s more into sweets, but I’m a chocolate lover, so we never clash when it comes to who will be having the Percy Pigs and who will be having the Galaxy. At Christmas, like most households, we gorge ourselves on Quality Street – I love sharing these chocolates with him because the green and orange ones are mine, and the rest (the yucky ones), are his. He loves the water and could give Michael Phelps a run for his money. A 6ft 2 black man and a real softie.
Growing up, I knew my brother was autistic, but I never properly knew what it meant, and to be honest, I still don’t completely understand his condition. I was often ashamed of him and remember not wanting to have sleepovers when I was a child because I was apprehensive about what people might think of him – we all know kids can be cruel. In a way, I wanted to protect him. Would they laugh at him? Would they tease him? Now, after years of soul searching and growing up, I realised that yes, he’s my brother, he’s autistic, and if anyone has a problem with him, that’s their issue.
Better than Houdini himself, from the ages of 10 to 20, he’d often vanish without a trace, leaving us to call the police because he had, yet again, run off into the sunset, while we were worried sick. When he was about 12, he ended up being hit by a car, causing him to lose his two front teeth. I remember promising myself and him, that this would not happen again. It was clear that we needed to Goldie-proof the house so doors had to be bolted shut, alarms installed, and our eyes were constantly on him.
“I think he notices that something in the world has changed, but doesn’t fully comprehend what it is that’s stopping him from going about his days as he used to”
When he was around 18, he ran away again. From then on, windows were also bolted shut because he’d mastered the art of escaping but similarly, we mastered the craft of bolting anything that could be shut close (for his safety of course) and developed spider man like senses so notice when the household was a little too quiet. In August 2014, he ran away and the likes of ITV covered his disappearance – it was scary seeing him on the news. He recently ran away during lockdown too, my younger brother had left and told me to close the door behind him but I was so head down in work that I forgot. We found him that night, but I kicked myself for not having locked the door, like I’d been trained to since I was eight – I got complacent because he hadn’t run off in years.
Glodie has always gone through, what I refer to as ‘phases’. They’re kind of quirks that he goes through, like the toothpaste having to be in my parents’ room, insisting that every meal he’s served is accompanied by a slab of cheese, his top button must be done, radio in the car bring turned on when traveling, coat fully zipped, every item in the household to have its place and can never be moved, no one on his bed (EVER). He’d also bite things like his arm or the remote control when feeling angry – it was hard seeing him hurt himself but as he got into his 20s, he hasn’t been doing it so often. However, since lockdown has started and his frustrations of not having a routine have grown, this behaviour has intensified.
Due to social distancing, Glodie has been unable to go to his school, as normally he would need a staff member to be by his side at all times. Sadly the school is unable to accommodate him at this time because of the two-meter rule. Also, before lockdown, my father would often take him on walks and they’d venture out, doing tour de London daily. Yet because of the pandemic, they aren’t able to go out as much, because my father is technically in a high-risk category and is shielding from Covid-19.
“My brother is distressed, as he wants to be out and about in the world, but can’t because of the lockdown”
My brother is distressed, as he wants to be out and about in the world, but can’t because of the lockdown. He wants to see his classmates and be at the school where he’s showered with attention and kept busy constantly. He wants to explore Brent Cross, with his father by his side. But he can’t. He’s now restricted to the four walls in his home and because he’s unable to communicate verbally, he’s portraying his frustrations physically.
For example, he’s been ripping anything he can get his hands on. I came home to find a crisp £10 note ripped to shreds like wedding confetti. If I’m not careful, he rips the notes I take for work, which is why I’ve started writing notes on my laptop. I can’t expect him to change while we’re in lockdown, so I’m happy to make adjustments to my way of working. He’s also started throwing things outside the window. From my new highlighter smashed to smithereens to an Ann Summers bra, almost all the contents of my room have taken a trip outside thanks to my brother’s throwing abilities (sometimes I joke that he should consider a career in javelin).
He’ll chuck water on my bed if he’s mad at me and if you suddenly can’t find something, more likely than not, Glodie has popped it in the downstairs crawl space. If you go down there, you’ll find phone charges, hair bands, forks, jewellery, stationary, all of the above! And though I try to remain as calm as possible, when he gets frustrated and does this, it leads to my own frustration, which turns to this endless cycle of often repressed anger. I know he can’t help it, but I’m only human.
Not so long ago, my resentment reached the limit and I just couldn’t take it anymore. I remember screaming “I hate you” and storming out of the house. But of course, I came back eventually, because it was freezing and because I wasn’t really mad at Glodie – I was mad at the impossible situation we’re stuck in.
Watching Glodie struggle in normal times was hard enough, but in a pandemic, his life has been disrupted. It’s been a very difficult time for our family and sometimes it feels like we’re not doing enough to let him live his life in a way that’s most fulfilling for him.
“I wish there was more help for people like my brother, who are locked up at home and having their routines disrupted, which is severely affecting their lives”
It’s why when Katie Price was recently demonised by the public because she opted to put Harvey in an assisted living accommodation, I understood where she was coming from completely. I only want the best for my brother and right now, he’s struggling. I wish there was more help for people like my brother, who are locked up at home and having their routines disrupted, which is severely affecting their lives.
My brother remains confined to his room most days and it saddens me to see him so bored and frustrated. Clearly, not everyone can be locked up for months on end and not everyone can adjust so easily, especially those who are autistic and have severe learning disabilities.
Nonetheless, lockdown has also enabled me to get to know Glodie a bit more. I know he loves Afrobeats and is a huge fan of the likes of Wizkid and Davido. Cheddar cheese is his favourite and has to be in block form, not shredded. He adores my cooking, everything I make he gobbles up – even the vegan stuff. He understands French better than I thought (it’s my parent’s first language). He prefers joggers over jeans any day and shares my father’s love of the colour grey.
Knowing that he has his struggles, I want to do better. I don’t want to be angry or frustrated, I need to understand that it isn’t his fault. Speaking with my parents to get more insight into his condition, and reading his school documents as part of my research for this article, made me quite emotional as I was unaware he had so many impediments. I felt sick and I did cry because it dawned on me how horrible I’d been in the past. I can do better, whether that be, learning sign language to teach him so he can communicate better, being more patient, or buying him that Million Dollar Baby Tracksuit from ASOS, I promise to be a good little sister to my brother, the wonderful Glodie, who buckles my seatbelt, pops my shoes in the correct place and makes me feel like bloody Jamie Oliver in the kitchen.