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Tiny Tyger, Baby Bear and Me: December 2015

Saturday, 19 December 2015

An ASD Christmas

I love Christmas.  As a child I made an 'advent calendar' to count down the days until my actual advent calendar started.  This is not some Scroogy post against Christmas.

I may or may not have bought this elf hat recently.
It is a pretty rough time of year on little kids, though.  I mean awesome and completely worth it but it's coming to the end of term so they're tired out and Christmas is hyped up so much and so far in advance it can be difficult for them to have to wait.

It's also pretty rough on people with ASD and I'd like to explain why.

1. Sensory Stimuli

The chance of sensory overload (a problem for many people with ASD at the best of times) is greatly increased around Christmas.  There are lights everywhere (often flashing), lots of bright colours and reflective surfaces.  There's Christmas music playing, people getting excited and shouting, lots of crowds and parties.  Even the smells are often different and overpowering (all the cinnamon and cloves and...just excuse me for a minute whilst I ask the Wolf to make some mulled wine) and there's new food and textures.

If you don't really understand what sensory overload actually feels like, I'll try to explain from my own experience.  I don't think I'm autistic but I'm very noise sensitive and whilst I don't think what I experience is as extreme as many autistic people it gives me a little insight.

I struggle with noise when I'm trying to concentrate or when there are two sounds at once.  For instance background noise (a song playing quietly) when I'm speaking on the phone, Tyger and Bear both shouting and banging, someone talking to me over the end credits of a film etc.  It feels like it impacts my other senses.  It feels like pressure on my head/face and/or like a blinding light being shone into my eyes.  I can't think whilst it's happening and I feel extremely agitated, distracted and hostile all at the same time.  It's really unpleasant.

That gives you an idea of what a milder version involving only one sense might feel like.  For people - especially children - with sensory issues, it's really rough.

Imagine this searing into your eyes whilst you try to stay calm.

2. Change of Routine

People on the spectrum tend to need a routine. A change to that routine can be hugely stressful.  School and preschool routines are invariably disrupted by nativity play rehearsals, Christmas parties, visits from Santa, games, Christmas films.  Weekends might be changed around to accommodate Christmas shopping or putting up decorations.  Family and friends come to visit, bedtimes and mealtimes become more lax and Christmas day itself can be chaos.

For kids on the spectrum, who have little control over their day to day routine as it is, this can feel very confusing.  It induces anxiety and a feeling of spiraling out of control.  They often rely on the predictability and sameness of their usual week so such massive changes to that can be devastating.

3. Social Expectations

A lot of people feel awkward when they have to open a present in front whoever bought it (I want to seem grateful but I don't want to overdo it so it seems false...was that smile natural...should I tell them I already have one of these?) but there are so many social expectations placed on someone on the spectrum at Christmas that most NT people don't give a second thought to.

Not only are Christmas parties loud and bright and a change from normal routine but they also involve social interactions outside of the usual (dancing, games, buffet style food).  Giving and receiving presents and cards also involves certain etiquette ASD kids might not be aware of (acting grateful if you receive a gift you don't like can seem like brain surgery to them).  Then, there's the big bearded man in red.  A lot of kids on the spectrum won't even sit on their parents' laps, let alone some stranger.

And let's face it: some depictions of Father Christmas
can be pretty creepy.
And the sheer quantity of socialisation expected is overwhelming.  Whether it's relatives visiting, carol singers calling round, nativity plays, Christmas fairs...there's people everywhere.  People talking and expecting eye contact and gratitude.  It's extremely draining.

4. Waiting

Ah, childhood.  Remember when summer holidays seemed to stretch out before you like an eternity?  A week seemed like a month and a year might as well have been infinite.  That sense of time is great when you're doing something you enjoy as a child but when you have to wait for something?  It's agony!  I already mentioned my advent calendar to count down to December - I always felt like I was waiting for Christmas for years (now it seems I blink on Boxing day and another Christmas is imminently looming).

Well, children with ASD struggle with waiting even more.  Autistic children often find it really hard to fill their time.  It's not unusual for them to find 'playing' quite a difficult thing to do and so they get bored very easily.  Add to this the obsessive nature of many kids on the spectrum and the fact they're not good at judging time that's passed and when future points might be reached and waiting for Christmas becomes a nightmare.

I started writing this post before Tyger had a huge - and public - meltdown after his preschool nativity play.  It's one of those occasions where hindsight's a wonderful thing.  I'd put him down for both the Christmas party and nativity because I didn't want him to be left out but I knew it might be tough.

Tyger seemed to cope pretty well until right near the end of the play.  He asked to get down from the stage.  The preschool had made it very clear this was supposed to be fun for the children and they weren't precious about everything being perfect at the expense of the kids' comfort.  Whether the children joined in, wore costumes, stayed on stage, took a parent on stage with them were all down to the children and what they needed so I knew nobody would mind me stepping forward and getting Tyger (he'd asked to get down several times by that point).

Now, what I should have done is take him away completely for some space and some quiet (I even had his ear defenders with me and should have offered him those).  But, I wasn't sure if he wanted to join in with the remaining songs and would be upset to be taken away completely and there were a lot of parents filming the play and I didn't want to get in their way anymore than I had.  So, I sat with him on my lap in the aisle.  He seemed okay.

Then came the raffle.  At that point I really should have left but I had a strip of tickets.  I think Tyger thought they were handing out presents for everyone.  I tried to explain about raffles and prizes but this prompted him to say he couldn't wait for his 'surprise'.  When it ended and we left sans prize (or 'surprise') he started crying...and crying...and shouting.  We got to the car and he refused to get in.

All the other parents traipsed by with their tired but happy children and Tyger cried and wailed and begged me to take him back for his surprise.  I tried to soothe him, I tried being stern, I tried bribery.  But a meltdown is not so easily stemmed.

Cakes!  You can have all the cakes!
I managed to force him into his car seat.  Once home, he refused to get out of the car but - again - I just about managed to force him.  He carried on crying for sometime and I knew the meltdown was starting to ebb when he sobbed, 'Mummy, I can't calm down.'  That's always a sure sign he's ready to stop but doesn't know how.

I blew in his face.  That may sound stupid but when he was younger and had a meltdown he'd hold his breath and I was advised to blow in his face to make him breathe again.  He remembers that and sees it as a way for me to 'stop' him these days.  It only works once he's ready and I always ask his permission.

It was like a switch and he was okay.  It was all out.  The build up of all the noise and lights and people, the strange feel of the costume and the disruption to routine, the anxiety and the frustration and even the excitement and the joy.  It had been let out and he was tired but calm.

I love Christmas.  I love the over the top, gaudy, brightness.  I wouldn't ask anyone to give any of that up.

What I would ask, though, is that you reserve judgement.  When you're out Christmas shopping and a child is throwing a tantrum about their parents not buying them something, please don't tut and roll your eyes.  Perhaps they're some 'spoiled brat' or perhaps they're a child who is tired and overloaded and just can't cope with the crowds and the lights and the noise (autistic or not).

If there's a child at a Christmas party who's hanging back from the merriment, don't immediately try to jolly them into joining everyone else (as well meant as that may be).  First, maybe check if they need a moment away from the noise to calm down.

If you're holding a little Christmas get together and your neighbour's niece is refusing the buffet you've laid out she might not be rude.  Maybe she's struggling with everything and she can't handle the thought of strange flavours and textures on top of everything else.  Offer to put a round of toast on for her or see if she'd have a couple of crackers instead of getting annoyed.

For many autistic people it's the build up of lots of little things that culminates in a meltdown.  A couple of small kindnesses can mean the difference between hours of crying and shaking and a happy memory.

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Monday, 14 December 2015

How I Met Your Father

If you're looking for a post about ASD or depression (or people being hit by buses) I'm afraid you'll be disappointed for once.  This week was the anniversary of when the Wolf and I first started going out.  We went on our first date 12 years ago.  So I thought I'd write a nice little post about how we first got together.  It's almost Christmas, after all!

Me (pregnant with Bear), Tyger and the Wolf.
The Wolf and I met at high school.

We were in the same geography class when we were around 13/14, which is sweet right?

I know what you're wondering.  Did we make puppy dog eyes at each other across the room?  Send each other love notes?  Or, in typical teen film style, hate each other with a passion until a set of unlikely circumstances threw us together and made us realise our passion was actually love?

No, none of those.  In fact, I had no idea we were in the same class until after we started going out a few years later and he told me.

However, I did mention him in my diary mere months before our first date.  We were both at a meeting for some group or other and I wrote a list of all the people who attended in my diary (this was before I wanted to be a writer, okay?) and after all the names of everyone I knew there was one person left: 'some other guy I don't know the name of.'

That would be the Wolf.

Fast forward to the beginning of December.  Both the Wolf and I were in 6th year (in Scotland so I was 16 and he was 17) and spent most of our free periods in the common room.  The common room was a luxury afforded only to the sixth year pupils - though, we under constant threat of being permanently locked out due to a small number of twats who kept vandalising the place - and was a room with lots of sofas, tables and a small, grubby kitchenette (to be fair, it probably wasn't grubby before we started using it).

One of the main pastimes in the common room was playing card games.  Not for me.  I read books and chatted...in the corner away from the cool kids.  Until one day when the Wolf and his friends were organising a game of 'spoons'.

Now, for anyone who doesn't know what spoons is: it's a bit like musical chairs in card game form...if you replace the chairs with spoons.

Basically, there are some spoons in the middle of the table but one fewer than there are players.  You have to get four of a kind with the cards and when you do, you grab a spoon.  At that point everyone else also grabs a spoon and the player with no spoon is out.  A spoon is removed so there's still one fewer than players and the whole thing is repeated until there are two players competing for one spoon.  At that point, if you're a teenager playing the game in a common room, the spoon is hidden by one of the players already 'out' in one of the lockers outside the common room door and then a selection of sofas and cushions are placed against the door/in the way like an obstacle course and sometimes people stand guard with additional cushions that are used as rams and the game resumes.

The spoons from the kitchenette also all disappeared pretty quickly so knives, forks and cork screws were used in their place.

Which selection would you like to thrust your hand into?
So, the Wolf saw the need for more players as an opportunity to sweep me off my feet because everyone knows scary games involving hand injuries are the the best means of instigating a relationship.

Actually, it was sort of romantic.  The first round we played the Wolf grabbed two spoons and passed me one so I'd stay in the game.  He was probably stuck with me for life from that moment, really.

We played more cards through the day and even walked down into town to get a chocolate bar together (risque stuff).

That was Monday.  We tried to flirt through the next week but unfortunately the common room was off limits one day (see twat-vandals above) and the week finished with a driving safety day (culminating in a horrific video I blame for my continuing lack of enthusiasm over learning to drive).

We did manage to play cards again but this time he did not help me.  He pretended to help me and then royally fracked me over.  It meant I didn't go into our relationship blind: when it comes to cards or board games the Wolf is not to be trusted.  I'd trust him with my life and even my books but I would never trust him to move the number of squares he's rolled or put the correct card down.

Going home on the Friday I cursed myself for not asking for the Wolf's number and resigned myself to a weekend spent agonising and analysing until Monday finally came round again.

But, as I got off the bus and started to walk home, I received a text from the Wolf saying he'd asked a mutual friend for my number and hoped that was okay.

It was okay.

He told me he'd been trying to oganise a trip to the cinema with a bunch of people but nobody seemed to be free or interested and was I up for it?  As naive as I was, even I saw through this subterfuge and realised it would be a date.  I replied with an affirmative and he asked what I wanted to see.  I suggested The Matrix Reloaded but I don't think a Sci-Fi action film was really the tone the Wolf was trying to set so we settled on Love Actually on the Sunday.

It was my first date.  Other than a few kisses at parties my relationship history up to that point had included a boyfriend when I was four (who made me a heart-shaped Valentine's card...which opened on the right instead of the left - even at that age this irked me) and another 'boyfriend' a few months before going out with the Wolf who was terrified of girls and unceremoniously dumped me via text message four weeks after we started going out (two of those weeks were a school holiday during which we didn't see each other at all...).

So, come Sunday we got the bus together into the nearest city.  We had quite a lot in common in terms of taste in music, books we liked, TV and films we enjoyed (although, when I told my mum this she skeptically queried whether he really liked any of these things).

During the film the Wolf tentatively took my hand.  We had our first kiss.  We watch Love Actually every year on the 'anniversary' of that first date.  Hi, I'm Lady Nym and I enjoy Richard Curtis films.

After the film we went for food.  I opted for the incredibly sophisticated and romantic food court in the shopping centre (I'm a fussy veggie and I knew I could have a baked potato with cheese there).  I was glad of our less than grand surroundings when I misjudged the placement of my knife and catapulted both it and a load of cheese onto the floor.  I may have known about the Wolf's card game manipulation and deceit from early days but he knew about my fussiness and clumsiness.  We both entered the relationship with our eyes wide open to each other's faults.

We walked along holding hands and bumped into a girl in our year at school.  The look of shock and confusion on her face was to be mimicked by many when we went back to school.  The Wolf and I were not in the same circle of friends.  He was a pretty quiet guy who - up until a recent haircut - had hidden behind his long hair and hats.  I was the 'cello playing, English vegetarian who never quite fitted in.  It surprised everyone when we turned up to school one week holding hands and kissing.

Bizarrely, we became almost a celebrity couple within our year group.  I think the experience set me up well for having autistic children because we had 'get a room' shouted at us so often it was good practise for the repetitive nature of kids with ASD.

The Wolf bought me a lovely silver and amethyst ring for that Christmas, which I still wear every day.

Turns out I really struggle to take photos with my left hand.
And to the guy in our year who obviously fancied himself as a bit of a poet and said it would never last because the 'flame was burning too brightly'...we're still going 12 years later.

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Sunday, 6 December 2015

Who's More Autistic?

I wrote about my growing certainty Bear has ASD in a post a few weeks ago (What If There Was a Cure For Autism?).  It has thrown up some interesting considerations for me.  The cubs are brothers with not even two years between them and both have ASD/Asperger's but there are some significant differences in how their ASD presents.

Tyger doesn't 'appear' to be autistic to the untrained eye.  His language has always been ahead for his age and whilst that's not actually uncommon for kids with Asperger's, a lot of people still only know about non-verbal ASD kids or, at least, those with a language delay.

Bear, on the other hand, is clearly very bright but struggles with his language.  He's come on leaps and bounds in the last week or two but still struggles to enunciate and often resorts to grunting, a string of vowel sounds and calling everyone 'Daddoo' or 'Daddy' (though, he has attempted other names - including Mummy!).

Tyger holds in a lot of his more autistic traits whilst around anyone he doesn't live with and a lot of his autistic behaviours are slightly a-typical.  He does his 'verbal stimming' but very few people would actually realise this was an autistic thing, even if they were vaguely aware it was a bit 'off'.

Bear's ASD behaviours are both more visible and typical.  He flaps his hands a lot when he's excited or frustrated and he walks around on tiptoes a lot of the time.  He licks the wall, stove and flagstones and scratches and hits his own face when upset.

Basically, Bear currently looks 'more autistic'.

So, what does this mean?  Will Bear have a harder life ahead of him?  Is his ASD more 'severe'?

I actually suspect it might put him at a slight advantage.  Getting Tyger a diagnosis proved to be a challenge because, whilst the medical professionals recognised his autistic behaviours, other people involved in his care (who were consulted in his diagnosis) didn't see any ASD behaviours from him.  Bear has an older brother with a diagnosis alongside his more 'classic' autistic behaviours so will hopefully get that piece of paper more easily.

But it's not just the diagnosis I suspect might be easier.

Tyger is highly anxious and that's why he 'masks' his ASD when around anyone outwith the family (because he desperately wants to fit in).  He moderates his own behaviour outside the house but it's very tiring for him and often means he's exhausted by the time he gets home and more likely to have a meltdown.

Bear only seems to show anxiety when something in his usual routine or placement of things/people is off (and, even then, it's often anger more than anxiety!).  I hope as he gets older he'll actually be able to cope quite well as long as he has a good routine in place.  I don't think - though, it's obviously early days yet - he'll be as likely to hold everything in as Tyger.  If he's able and willing to do whatever he needs to in order to help stop him becoming overloaded (like the hand flapping or any other stimming) he might find things easier than Tyger.

It's interesting to think about what people consider to be more or less 'severely autistic' and how that translates when it comes to the quality of life the person with ASD actually leads.

The temptation is to think of ASD as a linear scale.  I mean, the 'spectrum' in autism spectrum disorder brings to mind a rainbow and the use of 'high functioning' and 'low functioning' (which many people find offensive, anyway) suggests it's as simple as starting at red and working through to violet.  Perhaps red is a non-verbal child who spends their day doing one repetitive activity in between meltdowns with lots of stimming and no eye contact.  That makes violet the slightly quirky but highly intelligent individual who is able to progress in a prestigious career and live totally independently.  Then all the other colours progress through from one to the other.

The truth is, it's not as simple as that.  That non-verbal child might start talking at the age of seven and end up living alone whilst holding down a job.  The employable aspie might have meltdowns nightly from the stress of their job and self harm from the anxiety it causes them.  Who, in this scenario, is 'more' autistic?  And who has the better quality of life?

Of course, those are extreme examples but not unheard of.  A very common scenario is for autistic school children to have what's known as 'spiky profiles'.  This means they excel in some subjects and areas whilst being far behind average in others.  In other words, they are unpredictable and hard to fit into a box.

Many non-verbal children do end up communicating.  Some start talking, others use picture cards, some use sign language and some find they can type (sometimes incredibly eloquently).  Many apparently 'high functioning' autistic people are never able to live independently, struggle with seemingly simple tasks and have a host of mental health illnesses almost certainly linked to their ASD.

Many people on the spectrum tick boxes at either end of the scale or simply a range in between.

I'm not saying there is no point in terms like high and low functioning ASD (though, I am more comfortable using 'Asperger's' and 'classic autism' as these seem to be far less offensive terms).  Nor am I even saying everyone with ASD has the same severity of autism.  I'm simply pointing out it's not black and white (of course not - it's a spectrum!) and that trying to determine 'how autistic' people are is not important.

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