I Asked My Siblings How They Handle Living With Autism And Depression



Like me, my brother and sister have weathered serious depression,
but their autism diagnoses created a fork in our roads to good
mental health.

Posted on April 14, 2017, 09:46 GMT

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.

More
longreads from BuzzFeed UK.

Fan of cats, pizza, Bojack Horseman, and Johnny Knoxville.
Not always in that order.

Contact Hannah Woodhead at hannair@hotmail.co.uk.


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