Monday 17 December 2018

Christmas challenges with autism and anxiety

There seems to be an unspoken pressure from society that Christmas should be a happy time. The month of December is full of so many challenges; extra pressures and unspoken demands mean that this can be a particularly difficult time for families living with autism, and especially for those with Pathological Demand Avoidance.
sasha hiding behind the christmas tree
The expectation that everyone should be happy is a demand in itself. When you add to that the assumption that people should spend lots of time (being happy) with family and friends, breaking from routines, spending more money than usual and the overall suspense during the build up to the big day, plus the disappointment if presents don't match what was hoped for, you are left with a recipe for disaster. 
Panto, a visit to Santa in his Grotto, ice skating, carol singing, decorating houses, flashing lights, church services, more candles, Christmas jumper day, Christmas parties, school plays, gift buying, gift wrapping, a special meal which you may or may not want to eat, snow (or just as bad, no snow)... these are just a few of the things which are different and additional at this time of year, and which may make some feel like blocking out the world.
stephs two girls, sasha with xmas hat pulled over eyes
Lovely Miriam, who writes a blog called Faithmummy, has come up with a brilliant Autism Awareness Elf who has been sharing picture messages to help others understand why this time of year can be extra challenging for those with autism. 
elf in theatre looking out at cars on road
This one rang very true for me; the caption was 'Day 15 of Autism Awareness Elf and today he is at a pantomime. The noise and crowds and bright lights were too much so Elf preferred to sit at the front door watching and counting the cars as they passed. Who defines entertainment anyway?'

Next Friday we will be going to see the pantomime in our local theatre. We go every year; it's one of our Christmas traditions. Sasha struggles with the noises and flashes of light and all the crowds of people, but she wants to go exactly because it's tradition. Parts of the panto she finds very funny because she loves a good pun (this article from the BBC about autistic people having a sense of humour is worth a read) but parts of it she needs to leave the auditorium for. That's just the way it is; I have to make sure we get aisle seats so we are not disrupting others as we pop in and out, and I have to make sure the seats have a good enough view for Sasha to see and understand what's going on as otherwise it won't hold her attention and that would be another reason for her to leave.

Before that, we have to face the school Christmas performance for Sasha. Our eldest daughter, now at secondary school, has already sung beautifully at the carol service in the Abbey. When she was at primary, she would relish any chance of a role in any assembly or play. Even though she would get butterflies, she would always pull off a great performance because she enjoyed it so much. 

Shows haven't happened like that for Sasha. There was one time (four years ago) when she was an angel, and it was a magical experience - my post titled Christmas Show success tells more. I had to be at school in advance to help get her dressed and lead her through, to try and keep her as calm as possible, and it worked that once.
Sasha as an angel
Earlier this week, I was sent these words below by another mum (thank you Emma Mills!). They struck a chord with me and tears pricked at my eyes; the angel above was an exception and I've felt like this. Many times. 

All the parents sat nervous and excited in the audience, 
there were some grannies and grandpas too, 
the lights were low and the children filed in. 

Neat little lines of children buzzing quietly (and some not so quietly) with anticipation, 
Little unchoreographed dances as they found their seats, moving round one another in crinkly costumes that itched a bit and didn’t fit too well. 

Except one child. 
Whilst the school thrommed with the low roar of the voices of parents and nervous smiles of small children filled the air, 
one little girl was in her school uniform going home. 

Her costume hangs alone in the corridor on its named hanger. 
This little girl knows all her lines perfectly, she knows when to be on stage and off it, 
She knows everyone else lines too. 
She knows just when the reception children should file on and off again, she knows where the angels should stand and when Mary should come to the microphone and say her part. 

She knows all the words to all the songs, 
She sings her parts beautifully with a mixture of joy and concentration. 
But her costume stays alone in the corridor on its hanger. 

She’s going home. 

Someone else will be angel Gabriel today, someone more reliable. Another little face stands in the bright spotlight saying the lines of an absent angel whilst proud parents beam smiles and take pictures. The ‘real’ angel Gabriel looks dully out of the car window at the rainy winter day outside, still wearing her school uniform. 

She practised for weeks, she wanted everything to be just perfect, all of it. 
She got loud and cross in rehearsals if it wasn’t just right and she got bored practising it over and over again when she felt she knew what to do now. 

So she can’t be there, because if it isn’t just right she can’t sit quietly and hope no-one noticed it. She will have to put it right. 

So she’s going home instead. 

As the play comes to an end and the audience erupts into applause, children fill up with pride and relief of a job well done, 
one little girl and her mum sit quietly in the car,  
falling tears make no noise. 

The mum wishes she could put the radio on to hide the small noises in her throat, 
sounds of a sadness held inside that wants to come out, 
sadness louder than all the applause in the school hall. 

They’ll go swimming instead.

As a parent, it's heartbreaking when you know your child is disappointed with themselves and sad, through no fault of their own. We want to see them happy and achieving, and we guide them and will them on. We can't fix everything though. Anxiety is such a difficult cross to bear for those who struggle with it.

Earlier this year, in summertime, only a couple of months after starting at her new summer school, Sasha decided that she would like to write the script for the school's Christmas play and the school encouraged this. She has a brilliant imagination (another autism myth busted there) and a great sense of humour, so she wrote a great script. Sadly it was deemed a little too challenging for some of the children to perform; instead other scripts were introduced and Sasha was offered the role of co-director. This was a genius move and definitely played into the classic 'need for control' which is to be found in those with Pathological Demand Avoidance.

Sasha has been excited about rehearsals for the last few weeks and they seemed to be going well (if we discount the time she got annoyed with some of the other children for not performing well and told them they were rubbish in no uncertain terms...oops) but last Tuesday she came out of school sad because she hadn't been able to perform her part in front of the other children. It's a bit difficult to explain why not; it was partly her anxiety about being watched by other people but also to do with the circumstances and story of the show. Because of her avoidance of demands, she hasn't wanted to learn specific lines so her part involves improvisation. This girl knows how to challenge herself without even realising it!

Then on Thursday she came out of school very pleased with herself because she had actually managed to practice her part, live as it were, in front of the other children and teachers. Tomorrow is her dress rehearsal, and I'm hoping her joy isn't short-lived; everything is hanging in the balance at the moment and I'm waiting with bated breath to see whether she can pull off a performance in front of parents on Tuesday...

Sasha has already opened more than one of her main Christmas presents this year. I've written about this before in my post 'How to help a child with PDA at Christmas'. Another parent to a child with PDA recently told me that her child has been struggling since December 1st because the suspense of waiting for a present is too much for them to handle. Her child's behaviour has been on a downward spiral and the child has expressed it as a 'need' for a present. Some who don't live this life with PDA might see this as greed and a spoilt child rather than the desperation and anxiety and overwhelm which it really is. My advice is always to ignore what others think and to do what can be done as a family to calm the anxiety in this manic period before the big day.

I'm going to finish off now with links to some other blog posts offering advice for Christmas, in the hope that they may help some other families.

Two from Kelly at It's A Tink Thing: Top tips for surviving Christmas in an autism household and How to help an autistic child to manage the school Christmas play

Happy Autism Christmas by Yvonne Newbold

Autism: Surviving a visit to Santa by Mummy Est.2014

How to make Christmas magical for children with autism on Huffpost

How I help prepare my autistic child for the Christmas period from Living with Blooming Autism

An autistic person's guide to an autism-friendly Christmas by Autistic Not Weird

Christmas tips for autistic families - on here, guest post written by The Autism Page

Removing the anxiety and gift-giving surprise by Life and ASC

The pressure of inclusion in Christmas shows by Rainbows are too beautiful

How to Plan Christmas with Special Needs Children by Lipgloss and Curves 

To find out more about our experiences, please check out our 'About Us' page. If you are looking or more information on Pathological Demand Avoidance, why not try some of these, my most popular posts?

What is PDA (Pathological Demand Avoidance)?

Ten things you need to know about Pathological Demand Avoidance

Does my child have Pathological Demand Avoidance?

The difference between PDA and ODD

Strategies for PDA (Pathological Demand Avoidance)

Pathological Demand Avoidance: Strategies for Schools

Challenging Behaviour and PDA

Is Pathological Demand Avoidance real?

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  1. All so familiar to us too... we end up opening a present every other day which seems to help! I would love to be able to share Emma Mills’s piece about the nativity - would that be possible? x

    1. Hi Sarah, Emma would love it if you could share from her page - link is in my latest FB post:

    2. Aww that’s fab! Thank you - shall do...

  2. "Panto, a visit to Santa in his Grotto, ice skating, carol singing, decorating houses, flashing lights, church services, more candles, Christmas jumper day, Christmas parties, school plays, gift buying, gift wrapping, a special meal " - none of these apart from the tree and a Christmas dinner happened here, even family visits were cancelled. It paid off, but of course the price was that we all felt isolated and out of step. There's no easy answers...

    1. I hear you about the isolation. And the lack of being able to do what I want for me. Have come to accept it's just the way it is for me though x

  3. So very familiar Steph. Our eldest has said a couple of times he'd rather be at school. He then days it's not true but I understand it's because of the challenges he feels. He says he needs to be prepared for everything at the moment. David we've basically let do as much as normal. No different meals. When we had Christmas lunch he has peanut butter on toast and apple slices. But we've made it through... so far. Thanks as always for linking to #spectrumsunday


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