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A house I know is getting ready for Christmas in a way some may find unusual. For a start, there is no tree, no tinsel and no card display. The care team are not ramping up for an exciting time with choruses of Shakin’ Stevens or Jingle Bells. The only concession to the festive season is a copy of the Radio Times.
For Sandy and Marco who live there, this recognises their extreme needs to have routine, consistency and sameness. Both of these men are on the autism spectrum, with severe learning needs and challenging behaviours. When they moved in together three years ago, it became clear from their response to physical changes in the home that theirs was to be an interesting lifestyle.
Choices and Needs
Considerable effort has been made to listen to both of these men in terms of their preferred domestic environment. Colour and texture of furnishings and décor has been carefully chosen and planned to ensure that nothing jars, nothing challenges. So, every year at this time, the team know that the introduction of heaps of glittering, twinkling things would be more than either man could handle.
For many people with autism and learning disabilities, change can be very hard to manage. They have a need to be able to predict and expect the routine of their day. Surprises are not necessarily welcome, so you may find that the response to opening presents is not out-and-out delight, but can be complete indifference. Moreover, the heaps of discarded paper and ribbons can send some into meltdown.
Another struggle is around the changes to daily routine, such as holidays from work. If Marco is planning to go to the shops on Friday week as normal, he may find it hard to understand that the shops are closed and buses are not running. I have known people become very distressed indeed that they cannot adhere to their daily routine when Christmas Day coincides with a customary swimming trip or day activity.
Those of us who work with people on the spectrum will be sensitive to the need to limit surprises and manage the festive arrangements to prepare people for what is happening. For some, we can begin to talk about the holiday in order to plan and prepare. It might help to put in place a diary of events to help them through it; “after we get up, we will have presentsthen breakfast…” Now and next can work in this way to help prepare someone for an unusual day.
Some people cannot handle the change even with preparation, hence the Spartan arrangements with Sandy and Marco. The first year that they were living together, the tree was installed and decorated while they were out. When they returned, the tree, baubles, trimmings and tree bucket were violently removed to the horror and dismay of well-intentioned carers.
It is hard for some to understand that not everyone experiences festive fun in the same way. Over time and with experience, people can learn to enjoy the season for all of the positive, warm and happy feelings it brings. But awareness and sensitivity can make the difference between a Merry Christmas and a miserable one.
The National Autistic Society has helpful advice on the web.http://www.autism.org.uk/christmas
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