There’s a two-year gap each way between myself and my older brother Jack and younger sister Elle – I’ve always joked about having middle child syndrome. While we grew up bickering and fighting like all siblings do, we’ve always had some things in common: loving cats, playing video games, watching superhero movies. As far as siblings go, I’m lucky to have two incredibly generous, supportive, sensitive, and understanding ones.
Jack and Elle have autism. They were diagnosed with Asperger's syndrome when they were in their early teens – it’s a form of autism that relates primarily to how they perceive the world around them, particularly language, emotions, and interactions with other people. My brother is also dyslexic, and my sister has ADHD and dyspraxia. The diagnosis of Asperger's syndrome only came after years of referrals, hospital appointments, and arguments with school. Mum recalls one teacher’s comment about my brother, when he was 6 years old: “He’s a nice kid, but don’t expect him to achieve much.”
Another teacher’s remark sticks with her too: “Does it really count as bullying if the victim doesn’t realise they’re being bullied?”
Mum didn’t know how to respond. I’d told her my sister was being picked on at school, and she’d gone to speak to the staff, disheartened after going through the same trauma years earlier with my older brother. A decade later, she tells me she still can’t quite believe she was asked that question, but she was always used to fighting the systems that tried to keep us all down. She’s been fighting for 20 years. “Is it always going to be like this?” she says. “Am I always going to have to fight for them, just to get the basic things they need?” My brother didn’t speak until he was 5, and struggled to read and write; she refused to let the school dismiss him. She refused to back down when my sister was singled out as lazy and disruptive. She’s still fighting now for the support we need, most recently to get the financial support my siblings need to lead independent lives.
She also refused to let my school dismiss me, when they suggested my mental illness was really just laziness. I got ill in my second year of high school – depression blindsided me, and it seemed to come out of nowhere. I’d always been an overachiever, I’d always loved school, yet at 13 I suddenly couldn’t bear to even get out of bed. I’ve struggled with clinical depression and anxiety for over a decade now, and have more or less come to terms with the fact that it’s a part of who I am. I take medication and I see a psychologist and try to take things one day at a time. Sometimes it’s great and sometimes it’s awful; most of the time, it’s just okay. While I’ve battled depression and my own demons, my brother and sister never once complained. When I was at my worst it was hard to see how anyone else felt, and for a long time I didn’t realise the suffering they went through in silence.
In the early noughties when Jack and Elle were diagnosed, no one knew much about autism and Asperger's syndrome. My dad didn’t understand it, maintaining there was nothing to diagnose in the same way he insisted my mental illness was (ironically) all in my head. After he left, we all tried to cope with the aftermath in our own ways. I’ve always known life’s hard for my brother and sister in ways I can’t imagine, but it wasn’t until I came to understand my mental illness that I began to notice our parallels.
Research by Cambridge University in 2014 found that adults with Asperger's syndrome are more likely to experience suicidal thoughts than the general population, and it’s not hard to see why. Autism makes the world a confusing place, too loud and too bright and overwhelming. It makes emotions difficult to understand and express. My sister (the resident reptile expert) once said it makes you feel trapped, as if you’re watching everything from behind a heavy Perspex screen, like a python in a zoo. Many have gone to great lengths to try to make others understand how difficult things that most of us take for granted, such as friendships, relationships, and even simple interactions such as going to a restaurant or a party, can be when you’re a person with autism. Despite this, there’s often still an overwhelming desire to socialise and take part in society – but Asperger's syndrome makes that hard to do. Feelings of isolation and alienation lead to depression, but how do you understand depression when it’s a struggle to even understand the world around you? Curious to find out how it feels to live like that, I asked my brother and sister if I could speak to them about their autism – the first time I’d ever initiated a conversation solely based around it.
When I Skype my sister, she’s eating eggs and hash browns for lunch, in the kitchen of the house we grew up in. She shows me her pet caterpillar, Abithar – she suspects he’s going to develop into a chrysalis soon.
“When I’m sad I eat ice cream,” she explains. “Which is a really good idea, until I eat the whole thing, and then I just feel sick.”
I don’t know many people as upbeat as my sister. She’s always had boundless energy, talks a mile a minute – to the people she knows, at least. She can’t talk to strangers. I also know she’s suffered with crippling sadness that casts a dark shadow over her life. Sometimes I’ll call my mum, and she’ll be really worried because my sister’s barely done anything but sleep for days on end. I used to do that when I was a teenager in the depths of clinical depression. Mum recognises the signs.
“I’ve never wanted to kill myself,” Elle reassures me. “But my autism’s made me wish I didn’t exist.”
“I wouldn’t choose to go out of the house if I didn’t have to,” she shrugs. I know this isn’t hyperbole – she can spend weeks at home without venturing outside. I start to climb the walls if I’m inside for longer than a day. She has particularly bad social anxiety that prevents her from even making simple journeys to town or asking strangers for help. She’s entirely reliant on my mum to help her with everyday tasks – even with remembering to eat meals. Left to her own devices, she forgets to eat and drink. Their personal independence payments fund the support they need while attending university and working. My mum has been their carer throughout their adulthood, because they physically can’t manage the world on their own. My brother worries that their benefits will be cut, because he doesn’t know how he’d be able to lead a normal life without the support it affords them.
My sister’s on the waiting list to begin cognitive behavioural therapy in order to help with her social anxiety – something I’m currently undertaking myself at the moment to help with my depression. It’s a much longer wait for Elle as she needs a therapist who’s trained in treating patients with autism. She has trouble even acknowledging her own emotions, let alone talking about them or understanding how to cope with them.
I ask if she ever worries about being lonely.
“No,” Elle shakes her head. “Because I have the internet.”
It’s been a lifeline for my sister, enabling her to forge friendships around the world through video games and creating her own online comics, and allowing her to keep in touch with her friends from university now she’s living back at home. They log on weekly to play Dungeons and Dragons together.
“I’m not really interested in fitting in,” she shrugs, having demolished her lunch. “That’s why school was so horrible but university was so great. I found people with the same interests.”
This isn’t unique to Asperger’s, of course – many young people find that they don’t really discover themselves until they leave home for the first time. My sister struggled with assignments at university – particularly being organised and understanding exactly what her tutors wanted her to do.
“I realise nobody’s ever going to know what’s going on in my head,” she says. “And when I’m sad, I tend to retreat into my own little world, because I understand what’s going on in there.”
“But would you change if you could?” I ask. “If someone said you could take a pill and stop having Asperger’s tomorrow, would you do it?”
She doesn’t hesitate for a second.
“No,” she shakes her head. “Why would I want to change who I am halfway through? My entire world is based on being autistic. I don’t know what I’d be like without it.”
I’ve said the same about my depression, I realise. I’ve lived with the albatross around my neck for so long, I can’t imagine a life without it. I’m not sure if it’s a sign of how similar we are or just the reality of living with chronic conditions, but I’m comforted by the thought that I’m not alone. For a long time I thought that accepting my depression as part of who I am was, in a way, giving up – but you can’t change your brain chemistry, even with the assistance of medication. You just have to learn to work with what you’ve got.
I Skype Jack shortly after – he’s in his room, directly above the kitchen.
“Is that a green screen?” I ask, slightly baffled by the sight that greets me.
“Yes!” he enthuses. “I use it when I’m streaming on Twitch.”
Like my little sister, my older brother loves video games, in particular Minecraft. We’re a family raised on technology, and he’s the only person I know with a four-screen monitor setup in his bedroom. Computers have always been something he understands, more so than people or the world outside the safety of his bedroom.
“It’s gotten better as I’ve got older,” he explains. “I’ve trained myself to understand things, particularly people’s emotions. I’ve learned to empathise; I can’t do it naturally. That’s why I prefer speaking to people face-to-face, or on video calls – I can understand them far better when I can pick up on visual cues.”
I’ve never asked my brother directly what life’s like for him. I always knew it was difficult, particularly when we were at school. He was badly bullied for the first three years of high school and he didn’t have many friends. Once high school ended, those relationships did too.
“I am somewhat lonely,” he says. “I can count on one hand the number of true friends I’ve ever had, and I’m currently in contact with zero of them.”
He couldn’t be more different from my little sister in that respect. I ask him if he’s ever thought about killing himself. He knows I have. He’s watched me when I was suicidal, driven with Mum to fetch me from university in the middle of the night because I was breaking down. He shrugs down the camera.
“I have thought about killing myself,” he says. “But a long time ago I realised something – and this is something I could never understand about you,” he says, referring to my own battle with depression. “I realised it’s only temporary, the way I’m feeling. It will pass, it’s not forever. I don’t want to kill myself – it’s not worth it. Nothing’s worth losing my life over. That always made it a little easier to cope with.”
In some ways, my brother’s ability to dissociate has helped him cope with depression – he’s able to separate how he feels from reality and knows the pain won’t last forever, which is something that I always struggled with. I couldn’t separate how I was feeling at any given moment from how I potentially would feel in the future – not until I’d trained myself through extensive therapy. Logical thought doesn’t often factor into depression, but for my siblings the ability to deal with their emotions in a uniquely rational manner has, in some ways, helped them cope.
I ask him the same question I asked Elle: If he could stop having autism, would he?
He pauses for a while.
“I don’t know,” he says finally. “Years ago, when I was at school, certainly. Nowadays, since university and having a job, it’s not been such an issue.”
“Has it got better since you got older then?” I ask.
“I’ve got better at managing it,” he replies. “When I was younger, I wished I was normal...but who doesn’t, really?”
I can’t argue with that, but it makes me smile. I understand what he means, because when I was a teenager I would have done anything to fit in – and often I did. I was so desperately unhappy, and I realise now that my experience with depression and anxiety is not dissimilar to that of my brother, if not my sister. I think about Elle’s response to the same question: “I’m not really interested in fitting in.”
After I say goodbye, I think about Abithar, my sister’s caterpillar, and all those overused metaphors for transformation that it represents. There are things that my brother and sister were always told they wouldn’t be able to do – go to university, get good jobs, live a normal life. I’ve watched them do all three, and while I’ve never been surprised by their success, I’ve always been proud. Their Asperger's syndrome has undoubtedly made their lives harder, but it’s never stopped them doing anything they wanted to. I refused to let my depression stop me, either. It’s made the journey harder for all three of us, and battling ignorance and intolerance is part of that.
There’s been no chrysalis, no magical transformation. Life’s hard for them – it always will be hard. But their unique worldview makes them two of the most thoughtful, generous, and kind people I’ve ever known. The world needs more of those.