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.

Linked with:

Builders: The Agony

Maybe I'm not normal.  I know: you're shocked by this revelation.  I mentioned in last week's blog post (So Much for a Diagnosis) that there are builders in at the moment doing various...buildery jobs around my parents' house.

I have decided the world is split into two kinds of people: the kind of people who read the last sentence without any reaction and the kind who winced for me.

I hate having the builders in.  I don't hate the builders, themselves.  Sure they have a tendency to leave the baby gates open and are terrible at communicating what job they might work on next but on the whole I imagine they are decent guys doing their job.  I just don't like other people being in or around the house in general.  I can handle guests.  They tend to be people I like, stay in certain guest-appropriate rooms and arrive and leave at pre-arranged or predictable times.

The builders, though, turn up before 8am every morning.  It's not that I'm not up by that time (ha!  I wish; Tyger or Bear have me up well before 6 most mornings) but Bear is...clingy - yeah, we'll go with clingy - in the morning.  He tends to wake up in much the same way you'd expect someone who's passed out whilst being tortured and awakes to find their finger nails are being removed might wake up.  I get him his breakfast, sit with him on my lap whilst feeding him and then have to stay in the room for a good two hours or so because at the first sign I'm so much as looking towards the door you'd think someone was squeezing his fingernailless fingernails (I feel I should point out both my sons do, in fact, have all their fingernails still attached to their fingers).

Despite this, I still have to feed both cubs their breakfasts, let the dogs out and feed all cats and dogs.  Doing all that whilst trying to minimise the screaming from Bear leaves very little chance for getting myself ready.  I tend to just about manage to toast myself a bagel and pour a cup of tea.  Past that, I wait until my mum's back from taking my sisters to their school and college buses before I shower and/or get dressed etc.  This means I'm still unwashed and in pyjamas when the builders arrive every morning.  And we're not talking sexy, silky pyjamas or cute matching fleecy pyjamas.  We're talking a mix of decade old mismatched pyjamas with holes in and the Wolf's old long sleeve tops (often, also with holes).

And just as creased as that, too.

Then there are the practical issues.  It's pretty well known that people with ASD often like routine.  Tyger gets very agitated if I try to give him juice instead of squash at lunch time (juice is for morning, squash for drinking with lunch and water at dinner...obviously).  Having to spend almost entire days shut away in the - pretty small - dining room because the fireplace is being replaced in the living room is quite a big change.  Not only that but between the dining room and living room are sliding doors so they have to be duct taped up to stop Baby Bear just walking through there.  And the lack of space gives Tyger - who's already prone to boredom and agitation - a sort of wild cabin fever.

The builders are also...unpredictable.  Unpredictable means we don't know when they might be doing work on the fireplace in the living room as opposed to putting screed down on the floor in the hall between the old part of the house and the extension or doing...something to the...something outside the bathroom window (seriously, they seem to spend at least 50% of their time up ladders at the bathroom windows and I drink a lot of tea so that's not good) or knocking out a wall in the kitchen.

Did I mention the builders leave the baby gates open?  Well, they also leave the front door open.  Which is fine and sort of necessary when they're going back and forth but the other day I thought Tyger was with my mum in the kitchen and she thought he was with me in the living room.  He had actually put his boots on (he also had other clothes on for once and wasn't in his boots alone because he had nursery that morning so I guess that's something) and was lurking by the builders' van.  Now, before anyone decides to call Social Services - we're talking big driveway with a gate then a quiet lane before your get to a road rather than a main road outside the front door.  Still...not great.

Even 'simple' things like doing laundry has become a whole operation.  Okay, laundry is not normally simple; it's pretty complicated, actually.  The usual challenge is trying to sneak away to actually put the laundry in the machine, hang it up and put it away (I don't do ironing, if you hadn't already deduced that from the creases in the picture above).  If I do it whilst Bear is up and about the chances are he'll climb on something whilst I'm out of the room (have I mentioned Bear climbs?  On everything?  I mean, on smegging everything!  Chairs, tables, toy boxes, radiators, windowsills, desks, shelves, mantelpieces, the backs of sofas, counters...everything!) but if I try to do it whilst he's napping Tyger follows me and talks really loudly right outside Bear's room.

With the builders around this supposedly simple task becomes even more complex.  As evidenced above, Tyger can't be trusted not to wander off after the builders if he's not carefully watched (probably saying, 'Man?  What are you doing, Man?  Are you finished?  What's that?  Are you going to do hoovering? - did I mention the builders have a HENRY HOOVER?  Tyger was overjoyed to find that out).  Plus, the kitchen is often off limits because of all the dust.  Or I can get in the living room but everything's been moved so the washing machine is impossible to get to and even if the washing machine is accessible the tumble drier has been unplugged and moved (the weather has, of course, been awful).

I currently have washing in there...

What might look like a boring old vacuum cleaner to you is a superstar to Tyger.

But even with all of that, the practical component is not the worst part.  The worst part is simply the 'people in the house' part.  I suffer from depression and anxiety.  I also suffer from the arguably worse condition of Quintessential Awkward Britishness (or QAB).  Now, the former conditions make me uneasy about having strangers wandering about the house because they might judge me when Tyger has a meltdown (for instance, when he clawed me - I still have the marks five days later - because I reminded him he'd already had a Babybel that day) or because I feel like I can't actually catch my breath when they're working outside the window of a room I'm sitting in.  I mentioned I was hiding from the builders in my bedroom (with the curtains drawn) on Facebook and was asked why.  It hadn't seemed weird until I couldn't think of a logical response.

I feel like I'm stuck in a real life game of Pac-Man.  The builders are the ghosts and I wakka wakka wakka around the house trying to avoid them.  I guess the white dots are tea.  Or maybe the white dots are items of clothing I pick up as I make my way around the house and the cherries are tea?  There are cherries in Pac-Man, right?  But don't they make the ghosts flash and the builders certainly don't...errr...I believe I've mentioned my problems with creating metaphors and similes in the past.

But the QAB means when I fail to avoid the builders I'm faced with a conundrum.  Should I speak to them?  Is that polite or annoying for them because it stops them doing their job?  Should I at least say 'hi'?  But if they've been in the same house as me for hours it seems weird to say 'hi'.  Ignoring them is surely rude.  I normally settle for a strange smile that involves squishing my lips together.  I do not mean a pouty duck face look.  In fact, imagine almost the exact opposite of pouty duck face where the lips all but disappear and the chin becomes creased.  I tried to take a photo of the lower half of my face whilst doing it for this blog post and decided I did not want such an unflattering photo out there for the world (or the 50 or so people who are likely to read this) to see and I also struggled to angle the phone camera so you couldn't see up my nose.

Anyway, this 'smile' is often accompanied by an apology because, being British, I feel the need to apologise for pretty much everything I ever do.  I a builder is about to walk through a door and waits to let me past, I apologise.  If he's busy working in a room and I have to get something from that room, I apologise.  I also add in an exaggerated and hurried side step at least half the time even when this in no way helps.

Of course, all this QAB makes me feel like a right twat, which makes the anxiety worse, which makes all my QAB more forced and over the top, which raises my anxiety levels even more.  It's a horrible, ugly car crash of contorted facial expressions, muttered apologies and 'thank you's, sides steps, skips, little runs up the hall and sighs of relief as I finally get into a builder-free room.

The very worst part is the builders aren't even British so are probably completely baffled by my behaviour and possibly on the verge of calling an ambulance for fear I'm having some sort of stroke every time I come across them.

I'm feel so flustered by even writing about it all that I can't think of a suitable way of finishing this blog post so:

• *Weird ugly smile to you*
• 'Sorry'
• I'll just scuttle out of your way so you can go about the rest of your day
• (Argh, awkward unintentional rhyme of 'way' and 'day' sums up this whole painful experience.)

Phew, thank frack that's over.

Linked with: