If you live with autism you will be fully aware that even with precision planning, how well Christmas Day goes or does not go, tends to hang by a thread right up until the day itself. Even then it only takes one thing that was meant to happen that does not, or one person to arrive who was not expected, and the day ends up in the bin alongside the wrapping paper.
Christmas can be the worst time of the year for Children and Adults with autism. It’s a sensory nightmare, with every single one of their senses being under attack no matter where they go.
Everything they see screams Christmas at them - and Christmas means change!
For children there are so many changes that happen to their routines, both at school and at home that makes the run up to Christmas anything but joyful for them. The programmes they finding so comforting that help them to unwind after a long day at school all change at this time of year. The adverts inbetween the programmes change and are replaced with Christmas adverts. The food we eat changes. And let’s not even go into the changes that physically happen to the places we take our children. I dare not even say the 'S' word!!!
Although Christmas can be a very difficult time for many children with autism and their families, at least our children have us paddling away like crazy underneath the water, trying to make life as bearable for them as possible.
When they are young it can be easier (although not always) to get other families members and friends to take on board and understand that Christmas can be hard for our children. So when we ask them what time we can expect them to call on us before, during or after Christmas to share the joy of Christmas with us, we are not just being bloody minded with them.
People tend not to be so generous towards adults with autism. They have greater expectations from adults with autism. After all by the time they become adults they have had years to get used to this thing that happens at the ‘same time’ ‘every year’ so basically it’s not as if it is an unexpected change for them – is it?
Christmas can be even harder for adults with autism to cope with. Not every adult with autism has parents who can deflect any unwanted attention of gifts that might be heading in their direction. Even those adults who do have parents, still find the daily bombardment of all things Christmas hard to live with and for some they are totally unbearable.
Christmas can clearly underline the difference between adults with autism and neurotypical adults, who often throw themselves into the festive season at the deep end, and appear to swim their way happily through to the other end of it.
Adults with autism receive different messages from the changed TV programmes on their screens and the adverts that are pushed at us from the end of October these days. They don’t focus on the toys that they probably don’t want sliding along a conveyor belt in front of their eyes towards them. But they do see lots of happy smiling people, who can’t wait to eat, drink and be Merry with their families and friends.
For some adults with autism that would be the worst way to spend Christmas Day. For some adults it underlines the isolation and loneliness that they already feel. For some adults knowing that they are going to be expected to join in multiple conversations with people they don’t really know and have nothing in common with, it just increases their already high levels of anxiety.
I know firsthand how much my own grown up sons struggle at this time of the year. My eldest son spends more time awake than he does asleep as his levels of anxiety increase. He can’t even take refuge in sleep. He rehearses conversations that he might be expected to have, with people who might call unannounced. He dreads anyone, even me, giving him anything that he is not expecting and he does not really start to relax on Christmas Day until after tea.
My youngest does what he always does and carries on regardless. But doing that takes its toll on him. He stresses about things that don’t usually bother him and his need to know what is happening and when (something he left behind some years ago) suddenly makes an appearance again.
For some parents who have children with autism Christmas is something that we endure at best and could totally do without, if we have already had a hellish experience of it. If we feel like that then I can only imagine how our children and adults might feel.
If I could send out just one autism awareness raising message this Christmas, it would be to ask people to remember that autism is not just for childhood it is for life. Adults with autism have as many problems coping with Christmas as our children do.
In the words of youngest son 'I am not asking for the moon on the stick here - just a few reasonable adjustments'