Wednesday, 18 October 2017

The Festive Season and your Autistic Child



The Christmas Event. A tale of my past, as an autistic non-verbal child.
It's not quite the season of Christmas cheer, but it is the season where a lot of people start making plans for Christmas.
So many autistic children dread Christmas. Absolutely dread it. Not all. Some love it, because they love the overwhelmingness of it...but even then, watch many having meltdown after meltdown after that chaos.  What I write here is a generalisation.  Each autistic child is different.  Always ask what works for us.

Everything changes. In the last few weeks of term at school, everything changes. School plays to rehearse for. Christmas decorations to cope with. Timetable changes. The horrible 'you're not picked for any of the parts in the play but we'll let you hold a balloon whilst dressed as an elf' stuff. Changing into and out of searingly-painful costumes for dress rehearsals. Coping under bright lights and intense scrutiny. Trying to understand vague instructions.
Trying not to feel any smaller than I already feel.
Then, we go home, and home's different too. The adults are stressed about Christmas. The house fills with people, all of whom want socialising-with, and who will be offended when I can't. Or when I get it wrong. The decorations are so bright, so intense. Sort of fascinating and beautiful if it's just me and the decorations. Overwhelming when the room fills with people. The nightmare of trying to speak to say the Right Thank Yous to people. Otherwise, offence from them. Anger.  The dread of opening random presents, unsure what sensory or social consequences will occur.

The programmes on TV change, too. The daily routines at home change. There are new smells, new textures, new items everywhere.

"Let's go to a Fun Event everyone", someone says.

Out we go. I know not where. Into the crowd, the noise, the sensory hell of the event. In front of me, perhaps keen but clueless non-autistic 'helpers' who will make lots of eye contact with me and sound really bright and cheerful. This pleases the parents and the people paying for the event. "We want bright, cheery people in the room, after all".

I have no idea what the event was. I'm deep in survival. With any luck, no-one will pick on me and make me do a something for the cameras, a game, a 'fun activity' with lots of social rules. Oh, they do. I feel sick.  I can't process what's happening, fast enough.  I get it wrong.  The other children soon learn to play separately and abandon me.

Smile, Ann. Smile. Smile as though your life depends on it.  Smile and behave. Smile and force yourself to make eye contact and wear the painful scratchy jumper  given by Aunt D. She spent ages knitting the jumper and you Must Not Offend Her.  Even though you feel sick with the pain and overwhelmingness from it.  Count for as long as you can count. If you count to ten thousand, maybe it will be time to go home. Maybe it will be time to go to bed, where in the quiet and dark, I can be me.  Smile, Ann. Smile for the cameras.

I was that child.
I smiled.  I complied.  I buried the pain.  

https://www.theguardian.com/technology/2017/oct/07/the-party-a-virtual-experience-of-autism-360-video Is a useful video of one autistic young person's experiences at a party. Needs sound as well.

Jesus was not born in order to torture autistic children into pretending to be happy.

So, what can we do to help autistic children at Christmas or other big party and celebration occasions of any other sort?
We can plan ahead, including them in explaining what will happen and when.  Allowing them space to process it all, including a quiet place to go when it is too much.  Using visual support, if needed.  Perhaps a 'test run' to a venue, so we can imagine something of its layout and soundscape before the main event. 

We perhaps could be firm about saying to random relatives and friends, "No, you can't just turn up to the house with a horde of others at short notice, demanding that my child be present throughout - because it will cause immense distress for my child, thank you so much".

We can help that child to express what would work best for them, and listen, and think.
If there are non-autistic children to consider also, then respect the 'safe space' of the autistic child. Let them go to a safe bedroom or quiet room. Or use a pop up tent, headphones etc to give them a sensory space. Let them enjoy the things they can enjoy, without enforcing non-autistic social norms on them.

Don't expect Perfect Social Manners. We may signal happiness in totally different ways to you.  Failing to make eye contact or give everyone a hug is not rude, in autistic communications.  It's respectful.  Frankly, no-one should be forcing children to hug or kiss people if they don't feel comfortable doing so.  Body autonomy is a vital part of safety, in life.

For outside events, plan ahead. Ask. Be prepared for us to bail out into quiet space when it's needed. No quiet space set aside for us? Don't go. Or, take your own quiet space (that tent, those headphones etc).

Make it clear that it's always always OK for that child to stay safely in their own boundaries.  Think about taking a safe toy or activity.  Don't get angry if we want to stay with a safe person rather than join in with the chaos.

Then, we can start to relax and enjoy.

I see a lot of autistic children in the festive season. I recognise the desperation.  Both from the children, who are having to work hugely hard in baffling new circumstances.  And from the adults, who can't understand why their child isn't happy.  Or appears happy at the event, and then has meltdowns or shutdowns for days afterwards, during recovery.

And it's why I and others do the work we do, in ensuring that events and venues are as doable as humanly possible for autistic people of all ages.

I still dread parties.  I love being with people.  I care deeply about people.  I can't hear, or see, in a party.  It's terrifying.  So I will turn up and stay for only as long as I can manage.  That's OK.   And, if you are friends with an autistic person, tell them that's OK.  That's what we need to hear.

Thank you for listening.





The photo shows a red bench, in the middle of a snowy woodland.  For me, that would be a perfect Christmas venue.  Beautiful, peaceful, glorious.  I could sit side by side with a trusted person or two, just communicating the sheer joy of their company and the view.  Sharing time and space together.