Thoughts

To: My Big Brother, Tom

by Phoebe

To: My Big Brother Tom

From: Your Little Sister Phoebe

Cc: Our Friend Autism

Subject: Some things I thought I aut’ to share

Dear Tom,

“For I am a bear of very little brain, and long words bother me.”

– A.A. Milne, The World of Winnie The Pooh.

Oh don’t look like that, I’m only kidding. But you’ve got to admit that the last clause is definitely true. Granted, you can hammer down a three-syllabled resemblance of “time-for-bed” when Mum gives you a glance after a thirty-minute evening cycle of our well worn Tom & Jerry DVD. You rush up the stairs and doors slam in sequence, shuddering through our 500-year-old walls and floorboards; they built them well in those times.

I always think of you through the world of Winnie-The-Pooh. Your roundedness, your lovely appetite, your same red-shirtedness, and your unspoken pondering over immediate and practical matters. It’s the simple things with you: the corporeal rush of a tickling game, and all is well.

Films and TV and books dedicated to exploring autism always seem to focus on a tireless hunt for connection; they reframe again and again the classic tropes of Not Being Able To Make Eye Contact and Hoping for Emotional Recognition (the lack of the latter is why Autism (self-ism) has been theorized as a condition of the “extreme male psyche.” Although this seems a bit reductive to me, and simultaneously generalizes and excuses the (all together now!) self-centered culture of this gender as biologically legitimate, but this description nevertheless makes me chuckle and nod my head in quiet agreement).

But you’ve always been full of eyes and full of connection. You’re the happiest under compression at Christmas time, when my cousin Joe (who has always had a way with you) spends most of the holiday sat on your jolly belly, taking his own joy from yours. Your laughter is so infectious, it’s almost fatal. None of these traits require articulation, and who needs words anyway to have a good time, especially when you can sense things. Mum and I always joke about how we suspect you have a sixth sense, which would explain how you always manage to find my sweets somehow. Or maybe this is just my Dad, and you’re the easiest person he can frame to excuse his own sugar-tooth.

There’s no more joyful a sound than listening to you clap in your own rhythm to the “My First Nursery Rhymes CD” or hearing you eat something you really love like Pooh bear eating pots and pots of honey. People sometimes say this of me as well; I make it audibly apparently (with my mouth closed, mind you) whether I am finding something absolutely delicious. We’re appreciative of our nourishment, the Graham children.

*

“Tom…

Tom!…

look at me…look at me…now…Phoebe’s your…”

“sister!”

(Familial recognition! Nailed it bro…hm. But also, I feel…slightly suspicious?)

 Let’s try:

“Right! Good boy Tom…

ok…Tom…

Harry’s your…”

“sister!”

(ah, well. Good enthusiasm, but maybe not quite. Harry’s our cousin)

I remember being disappointed at first that my name and relation could only be understood through a mechanical routine of sound. I guess you just knew that “sister” was the response to the sonic intonation of saying “[so and so’s your…] with a lingered pause to mark our expectation of your response.

But then, I know you do recognise me. We have our own secret handshake. Well, when I say handshake, maybe it’s better to call it more of an audible acknowledgment. I’ll walk into the room, and you’ll grunt thrice, and maybe point to me; you’ll continue in this pattern until I’ve replied, by copying you. I’m not going to lie, Tom, you could have chosen a more harmonious sound to associate with me. I’m your not-annoying-in-the-slightest, saint-like little sister after all…

Ah ok, I see.

Well, whatever the rationale, I like it. You’ve always had a good sense of humour; it feels like how all brothers secretly want to greet their silly sisters, so I guess we could never acknowledge each other any other way.

*

It’s the same as it ever was. Aladdin (Laddy, your abbreviation) finds himself trapped, so he rubs the lamp. It heats up and jumps erratically around in his hands, shooting bold red fireworks. Abu and the magic carpet flee to hide behind a rock. The soundscape climaxes and the empty cave floods with washes of dark bruising cloud jetting out of the lamp’s spout, forming the formidable figure of Robin Williams, disguised as Genie.

“oaaaaaagggggghhhhhhh OI. Ten THousAND yEAAAAARS!!!…will give you such a crick in the neck!” Genie hangs Laddy up like a coat on a coat rack.

Pause. Rewind.

“oaaaaaagggggghhhhhhhOI. Ten THousAND yEAAAAARS!!!…will give you such a crick in the neck!” Genie hangs Laddy up like a coat on a coat rack.

Pause. Rewind.

“oaaaaaagggggghhhhhhhOI. Ten THousAND yEAAAAARS!!!…will give you such a crick in the neck!” Genie hangs Laddy up like a coat on a coat rack.

Pause. Rewind.

 (Etc.)

Tom, honestly, you’re actually such a stereotype.

Mum and I could probably reel off most of the classic Disney films by heart, not just because we’ve watched them so many times with you, but because we’ve watched the cogs of the shots grind over and over and over again.

The Disney thing is kind of interesting though. I thought it was a quirk unique to you, that you just so happened to find an affinity with the century-defining (albeit problematic bla bla) American entrepreneur and pioneer of animation that is our frozen-over Mr. Walt Disney.

But then I watched Life, Animated (a gorgeous documentary feature on an autistic boy who learns how to communicate again through his companionship with Disney characters), and realized that there’s perhaps a trend to be drawn between Disney-lovers and Autism…-havers.

I spoke about this with my friend. What is it about Disney that makes it so suitable and satisfying for autistic eyes and minds? We concluded that it must be something to do with the simplified facial expressions, easily-readable emotions and quick-to-navigate relationships. Also the consistent employment of certain tropes in conflict resolution (Hero defeats Villain. Princess marries Prince. Done). It’s not exactly progressive, but that’s totally irrelevant; you know what’s going to happen and you’re not surprised. There’s nothing in place to disrupt the flow of the routine that can cause you tremendous anxiety. I think this is why rewinding and replaying a segment of video is important for you too. You’re able to take a sensory control of what’s going to happen, satisfied by the pre-determined scenario that’s to play out on screen. Repetition seems monotonous to many, but it’s a comfort to you.

But then I’m no scientist.

*

FAQs:

 (Upon learning I have a brother a few years my senior) What does he do?

Ummm well no well it’s a bit unusual actually he lives in a National Autistic Society residence up in Somerset for most of the time and then he comes home every few weeks and we look after him he can’t speak you see *gulps* well not in the same way that you and I converse I mean we can communicate with him in our own way I guess but he likes Disney films and Tom & Jerry and being tickled and lots of cake, mainly.

I don’t know why I’m so terrible at answering this question in a laid back way, sorry Tom.

(But in my defense, it’s a bit funny how we tend to learn of people’s familial relationships by what they “do,” what they are undertaking, especially if they are of post-school age. What stage of life are you at on this conveyer belt? What are you achieving currently? Impress me? Maybe this needs rethinking. Change the framework through which we learn things of people; are we defined by what we do, or rather how we are and what we enjoy doing? It’ll make for less people shoehorned into less boxes. This is a half-baked thought.

I sometimes wonder what you would like me to say. I sometimes wonder what you would say about me, if you could.

*after a tangible silence* Oh, uh, is that difficult for you?

I was once talking to a dear teacher of mine after school in the bus bay. They are fantastic, and although it could be daunting at first to have an educator who was so in tune with the personal, it’s always been a comfort to know that they were looking out for me (with tissues always at the ready).

We stumbled upon the topic of you, and I gave my usual spiel. They said the way you were explained a lot about the way I was. I guess that’s always the case with siblings, but I still don’t quite get what she meant by that, specifically. In how I am. But then who does?

You’re not difficult for me because you’re my brother and I’ve never known any different. Autism brings its own array of difficulties, but that’s really to do with wider questions of your physical health. As leading autism specialist Simon Baron-Cohen says (yep, he is related to Sacha), it is a disability, but it’s also just a difference.

But that said, I should also do more to help you when you’re home, wash you, cook for you, to make your needs easier for you and mum. You’d probably think that was weird, though. I remember I was once in charge of getting you ready to go back to the NAS (or Naz as you/we call it). I came into your playroom to let you know the deal; you paused for a moment, hesitation etched onto your face. Why are you doing this? I imagined you thinking. Your befuddled eyes and tilted head made me smile.

*

Remember when you got lost? I was about 6 and you were about 9. The doors were generally locked when you were home, but something must have let slip. We live in the middle of nowhere – the audacity to go wandering off! We got the whole of Highweek out looking for you, and to be honest all I remember is driving by houses and houses and houses and houses. I wasn’t old enough to really grasp the gravity of the situation at hand. But now I’m sure my parents felt an organ-spilling-sickness. It’s one thing pulling a Holden Caulfield on us, but I know for sure that you don’t know the highway code (and neither do I, really), and we certainly know you don’t know how to cross a road (and neither do I, really).

Obviously, we did find you. You had just gone to our quite-far-up-the-road-unofficial-next-door-neighbours. You had managed to put on a video of Postman Pat and you had helped yourself to biscuits from the cupboard. Business as usual.

*

We’re watching University Challenge. I’m too young to have a clue what’s going on (and I’m even too dumb to have one now) and all I can ascertain is the grumpy face of the presenter who’s always really mean to the people who don’t get it right.

You’re in the room, and your favourite film was, and probably still is, Snow White (Whiter, as you call her). I like to think you’re going to marry her one day.

Starter for ten. Picture round. Six of the Seven Dwarves come up on the screen, and one of them is blacked out in shadow. Which one’s missing, asks Mr. Paxman?

We turn to my brother. Tom! Who’s that!? Who’s that!?

“Dopey,” you say. We beam.

Correct! Ten Points to Thomas College, Cambridge!

You’re my Dopey. I’m the Evil Queen.

We laugh and praise you, and retell the story every Christmas to an extended family who loves you to pieces.

If achievement is relative (which of course it is), then this is undoubtedly still the biggest intellectual achievement of our family to date.

*

Because you love food so much, we try and make you love walking too, to balance it out a bit. We soon learned that you’re quite the runner. My mum even bought an electric bike to keep up with you, you’re that fast. You pelt, and I pelt with you. Your head juts forward and sometimes your arms flare behind you, kind of like how Sonic the Hedgehog runs. When you’re really happy, you make the air ripple around you with jubilation.

You’ve taught me not to care about what people think, and not to make excuses for who one is, even when you do decide to do a massive burp in public.

But you can also be a bit of a ticking time bomb. Once on a walk around Dartington Hall, Mum and I could tell something was up. You were bombing it down the hill and, usually, we would call you back and you would come back, skipping along. But this time if we called, you’d get het up and try to bop us on the head; you were on the edge of something much more serious, and you are so strong against your mum and sister’s smaller frames. I spent the rest of the walk staying ahead of you so we could keep you going and get to the end as quickly as possible, mum and I bookending you to restrain your bubbling anxiety: a force field around you.

And sometimes you can boil over. Once I found myself stuck in the bathroom when you wanted to come in. You were in quite a mood and I was just in the wrong place at the wrong time.

You left me a little bit bruised and battered, but it’s not your fault. I would say you’ve taught me what I hope is a deep capacity for empathy and forgiveness in this life, but that makes it sound like you need to be forgiven for how you are. But you don’t, because you don’t mean it. There’s nothing more heart-breaking than seeing your remorseful gaze; tears prickle your eyes when you know you’ve done something you maybe shouldn’t have. You wouldn’t hurt a fly if you could help it.

*

Remember when you basically tore your head open?

Yeah that was a grand idea, wasn’t it? Plonker.

You had a tumour in your ear because the doctors were a bit rubbish and never picked up on it.

And I always thought I was the one inflicted with fixable issues. Terrible eyesight. Terrible skin. Terrible teeth. This was all justifiable to me because at least you never had these things on top of everything else. Because I can actually express a bit more clearly when I’m in pain. I can understand my ailments.

Mum and I think doctors need to treat you like a horse. Not in a weird way, but a veterinary diagnosis is so much more holistic a process, because the animal, like you, can’t use language to tell you what’s going on in their body, they just have to work from sense. I think more needs to be done to train doctors in handling differently-abled capabilities.

So you had a major operation for your ear. It had got to the point that the tumour wasn’t far from entering your brain. It all was fine, until after you got out. They had to stitch up the side of your head, and you could feel there was something not quite right.

Why is there string in my skin? I imagined you thinking, so you pulled it all loose.

We tried to glue you up but you ripped yourself apart again. We were a bit helpless, surely anything could get into that gaping vortex?

Then my mum went to see the junior doctor on call, as a last desperate resort. He ingeniously told her that the only thing to do was to keep your hands sanitised so as to stop any infections from entering until the wound, eventually, healed itself.

It was an intense lifestyle for a while, but it did work.

My mum sent our young medical hero a present and a thank-you card.

*

On my third(ish) birthday, I had the most glorious balloon of Winnie-the-Pooh. It was a massive helium-fuelled spectacle and I carried it around like a trophy. When we let you have a go with it, you had other ideas. You wanted to set him free.

I think I probably cried and stomped around a lot when this happened. I was annoyed at you because I thought you had killed Pooh bear. But my uncle told me that Pooh was flying over the seaside. Even now, I imagine he still is.

*

My aunt dreams about you being able to talk, but I don’t.

I don’t know why I don’t.

(Once you started saying something that sounded a lot like “Darfur”. We joked that maybe the issue was that we weren’t speaking Arabic to you, and you were secretly fluent.)

I like to think that our family have our own well-developed language. One that’s so special it can’t be written down. It’s a language of specific noise and melody and breath and eyes and pointing and anticipation and tongue and laughter (on the most part).

*

Remember the first time you almost died?

Ok sorry, that was overdramatic. I was just trying to create a rhetorical technique in the grander structure of this piece. I’m a loser. Again, in my defence, none of us had ever seen an epileptic seizure before, so for all we knew, you could have been.

I was having a lie in, and I heard that cry from my mum, the kind where you know something has gone seriously, seriously wrong. I leaped out of bed and raced downstairs at the same time as my dad who was rushing from the shower, freshly robed. We collided on the landing (we were both always so useless). You were making this sound and mum mistook you for a tractor starting up next door and we lost your eyes. She was speaking to you and she was pointing out the tractor sound to you until she realised it came from you. You were lying rigid on the sofa that you lie on every morning when you’re home; you were making your way through your morning Bovril-on-toast.

My hand trembled as I called a shaky 999 and tried to describe what was happening to you. I remember that they told us to get you on the floor and in the recovery position. I remember this because you’re such a broad structure, and I had no idea how we were going to get on you on the ground. You were bleeding because you had bitten your tongue.

Paramedics were sent in a flash from above. You regained consciousness and your voice turned low and slurpy, like how you experience dreams or a record in slow motion. You dozed for the rest of the day.

Having autism dramatically increases the risk of developing epilepsy. But that’s not the thing that gets me. Many people live with epilepsy throughout their lives, and it’s just something you have to control. When you sense a seizure about to start, you take yourself away into a room on your own, get down low and wait it out. But you can’t do that, and I worry about you falling from an upright height.

There’s also a thing called Sudden Unexpected Death in Epilepsy (SUDEP). It’s not a nice thing. Young men with epilepsy are the most vulnerable to it, between the ages of 20-25. You’re 24 now. You had your first seizure a few years ago, and a few since. But you’ve been ok for a while now. Your meds seem to be working well and you haven’t had a proper one in well over a year now (except for little eye-flutters, restrained “absences”). But there’s still something that stirs inside me when the telephone rings and I know it’s from NAS. The thought often punctures my mind; you could be dead. Because of the statistics, I feel like we’ve only got one more year left to get through this period on thin-ice, but I know this is simplistic. You’ve got to count up the days, not down them.

I tend to align myself with Simon Baron-Cohen and a lot of what he says, and I do like to think that Autism is not simply a disability, but another way of seeing the world, especially considering that you are a part of a much grander spectrum of people who are a million miles more independent than you could ever be, yet there are distinct (and reassuring) social parallels.

“There are lots of different routes to adulthood,” he says. “The profile we call autism might just be one of those routes.”

But entangled with global development disorder and your epilepsy, I’ve come to nuance this opinion; your brain isn’t just different to mine, it’s much more fragile.

And speaking of fragility, this is what completely bemused me about the experience of getting you to the invaluably brilliant National Autistic Society, who I am currently raising money for. It was a long, drawn-out battle to get you there with the appropriate funding. South Devon Healthcare Services wanted to house you in an Alzheimer’s home (yeah, that’s pretty messed up) because financial savings sometimes (a lot of the time) takes precedence over the individual’s personal needs. It demonstrates a complete ignorance and disinterest to the most vulnerable in society, those to which I believe we must give the most sensitive and thorough attention. You wouldn’t smash a heart if it were made of glass, you would cup it carefully in your stone-still hands.

But my mum got you there. We’re pretty lucky to have her. Mum and I always talk about how she would have made a great lawyer. But I’m pleased she kept her soul.

IMG_0654
squad

*

My mum has become skeptical over the years with regards to religion (for a multiplicity of pretty rational reasons), a skepticism I still always try to twist into a kind of anthropological sympathy. If God existed, they wouldn’t make people suffer like Tom is the kind of thing that gets thrown around a bit.

I sometimes go along to my best friend’s church. You’ve met Flo a few times. I like the sense of community, and I always say that God and I are great acquaintances, but nothing more. One time, there was an anonymous Question & Answer session with the pastor, and one of the questions was about those who have special needs, those who do not have the agency to make ethical choices in terms of how they live their lives. What happens to them after they die? Where do they get to go? How does judgment fit into their narrative?

The pastor said (and forgive me for butchering the words) that because these vulnerable individuals cannot choose how they live, then they have not chosen to be bad; they’re kind of morally pure, I guess? And so they will get to go straight to heaven, kind of like priority boarding (you’ve never flown, but that’s when you can get on the plane first).

Now, I don’t care whether heaven exists or not; it’s irrelevant to me and in some ways, neither this question nor this answer is particularly practical in helping you live the best life possible. But, dear Tom, I cried so much when he said this; I was a big blubbery soppy sister.

*

I’m still kind of terrified for the future. A future where it’s just you and me left of our nuclear family. I don’t want NAS to be taken from you, and sometimes I work myself up that it would be my fault if it was.

I try to drop in a light-hearted remark to my mum about her making a booklet of care for me to follow to the letter, but the remark is obviously heavier than I make it out to be. My mum says I don’t need to worry about this, because you will always be taken care of in the NAS. But I want to be a part of this. I want us to be a barmy team. I just want to make sure I do it well.

Do you like me?

We’ll be ok. I’ll make sure of it.

*

I would say that there is now a pretty healthy amount of high-profile cultural output addressing autism. But a lot of it is male-centred and generally more in tune with the Aspergic end of the spectrum (I do not see much use in the specificity of the term “Aspergers;” it’s just another box).

My wood-tech teacher in year 7 assumed you must have been exceptional at Maths, like rain-man. Little 11-year-old me put him in his place, telling him that only about 10% of people with autism have “savant” skills, as showcased by Dustin Hoffman.

Here are some tweets, regarding the issue:

https://twitter.com/overphinker/status/1009757803832135680

*

Some things you, reader, aut’ to take a look at:

The Curious Incident of the Dog in the Nighttime (book or show)

A classic! The legends that are Marianne Elliot and Frantic Assembly gives such an imaginative insight into the workings of a pretty able autistic mind through innovative stage-craft. Time / space / numbers / pet rats / connection / London tubes / physical theatre / love / family – you get the gist.

We Live by the Sea

On Twitter, I said that Patch of Blue’s show was “a beautiful + honest theatre piece which uses all the sensory potential of the stage to illustrate the story of Katy – the first piece I had ever seen/read with a central autistic girl.”

I wrote a review of it a few years ago: https://www.ayoungertheatre.com/edinburgh-fringe-review-we-live-by-the-sea-the-pleasance-courtyard/

The Black Balloon

The most severe example of autism I have seen represented on screen by an actor; it’s quite remarkable really. It doesn’t hold back, shit smears and all. Mum and I cried and cried and cried and cried.

Louis Theroux’s Extreme Love: Autism

A just and informed piece from this iconic documentarian. It shows a varied range of spectrum severity, not just concentrated on one end. I couldn’t find a trailer for this.

Atypical

I thought this looked pretty trashy and ironically “typical” when I first saw it was being made. But it’s actually pretty sweet. And makes me think a lot about how our conventional social cues are often constructed through metaphors and what is implied as opposed to saying, literally, how you feel about things. Literalism is often seen as a weakness in the autistic condition. I see it as a strength; nothing gets fluffy. Being literal can be a beautiful thing.

Life, Animated

I don’t think Disney will help you learn to talk like Owen, but it’s wonderful to see what these films have done for more than one family.

*

That’s pretty much it for now. Oh and I’m doing a run on Sunday for Naz. 10k. I’m going to die. I’ll try and channel your rugby-framed power when the day comes. Head forward, hands flared. Pop and crisps when I get to the other side.

Here’s the donation link (turns to the reader and winks): https://www.justgiving.com/fundraising/phoebe-graham4

I framed this as an email, to make it work as an online blog post (a magician always reveals their secrets). But imagine that this is on paper. And imagine that my signature is a messy, wonderful, lovely, big, beautiful scribble, just like yours.

Tickle you soon.

Love your sister,

Phoebs x

p.s. I can’t remember who made this, but lol at us, my long hair and our Christmas hats.

IMG_E0657

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