Ho, Ho, Ho – or should that be aargh, aargh, aargh? If you have a family member on the autism spectrum you are perhaps not so enamoured of the forced jollity of the Christmas season as you feel you should be, maybe viewing it with apprehension (or even dread) from the first appearance of Christmas trees in the shops (I saw my first one in a hotel foyer in AUGUST this year – is that a record?) until it’s all over for another year. If so, join the club!
Our nuclear family consists of my husband Ian, daughter Sophie (29), son Edward (27, with a diagnosis of classic autism and severe learning difficulties) and me. Like many families with autism in the mix we have spent successive years trying to have a ‘normal’ Christmas, only to fail dismally on many fronts and start each year feeling disappointed. However, after more than two decades, I think we have finally worked out how to cope with the festive season and – dare I say it? – ENJOY it, so now I want to share our family’s perspective on what works for us. All families are different, so there are no guarantees that any of this will work for you and, indeed, you may well have a very different view from ours of what you want out of Christmas, but I hope my reflections will help you determine what is important to you and how to achieve it.
Firstly, there is the acknowledgement that we don’t all see Christmas the same way. Ian is a self-confessed Scrooge, regarding the Christmas season as an over-commercialised excuse for spending too much, overeating and drinking and being forced to attend a whole range of social events he would rather avoid. I love certain aspects of the season – sending and receiving cards, the pretty lights and decorations that cheer up dismal winter days, the looks on people’s faces when they really like the gift they have just opened, singing carols – but the stress of trying to get everything done on time and keep everybody happy mars my enjoyment. Sophie loves to party and have fun with her friends. And Edward ….. well, it’s all a bit of a mystery to him and sometime he can’t cope, but he loves the chocolate on the tree, coloured lights, jolly Christmas music ….
The difficulty is trying to balance everyone’s needs and wants and this is the problem with Christmas – it’s a time of high expectations (impossible to meet?) and we feel guilty when people bicker or cry and we are not achieving the ultimate goal (totally unrealistic?) – to be HAPPY ALL THE TIME! In addition, there are the social demands – visiting family and friends, having them visit you, working out the ‘politics’ about where to spend Christmas Day and Boxing Day without offending anyone. Without even taking account of the financial stressors, it’s the frantic shopping, huge supermarket queues, desperate searching for the ‘must have’ toy and a myriad of tasks to complete and people to please that add up to a gargantuan mission. The result is we are left feeling inadequate when it (inevitably?) doesn’t work out to everyone’s satisfaction. All this before we even think about the autism …..
So we need to be kind to ourselves and to each other. What is REALLY important? What can we let go of? What is more hassle than it’s worth? Gradually we have found answers to these questions and given ourselves permission to buck the trend and do what we need to do as a family. If other people don’t like it, tough! Here are some of our solutions to having a Christmas we can enjoy, not just survive:
- We don’t visit family or have them visit us at Christmas any more. They all live a long way away, necessitating overnight stays with the ensuing stress of unfamiliar places, disturbed routines, too many people in too small a space, distressed behaviour and a lack of sleep, so it’s usually just the four of us at home, keeping everything low key and routines intact, with similar bedtimes and mealtimes as the rest of the year. That way there is no guilt at spoiling things for everyone else and we can all relax.
- Rich food, different (and protracted) mealtimes and overindulgence play havoc with the digestion, especially for our autistic son who can’t self regulate and doesn’t recognise when he has eaten too much, so we don’t have the traditional huge Christmas dinner. We eat food we know he likes (usually pasta) in sensible quantities and space out treats so he won’t feel sick. For example, after the year when he ate all the chocolate tree novelties in one go when nobody was looking, we now put on one or two each day.
- It’s a long time to the big day when all the signs of Christmas appear in the shops so early, so we help Edward to understand that we are heading towards Christmas by using an advent calendar to mark off the days (with only one chocolate consumed each day – we retain control of the calendar – but he is allowed the ‘flap’ the opened windows as much as he likes), making a ritual out of putting up the tree and decorations, singing carols and lighting candles on the advent wreath at teatime on each of the Sundays of Advent and the invitation “You can listen to your Christmas CD if you want” , which he knows is only allowed at this special time of year. We are lucky that he loves bright lights and colours and does not get distressed by us putting up decorations. If he did, we would do the same as another family I know with two autistic children, one of whom loves decorating the house for Christmas whilst the other cannot tolerate it. They have one room as the Christmas zone for the enjoyment of the child who loves it and the rest of the house is kept ‘Christmas free’ to avoid stressing the child who can’t cope with it.
- The annual trip to Birmingham’s German Christmas market just before Christmas Eve for a sausage, mulled fruit juice and a ride on the carousel is another reminder for him of where we are in the year and what comes next. We find experiences like this that we can all share add a wonderful element to our unconventional Christmas.
- We don’t have the TV on much – too loud and over-exciting – but we always watch ‘The Snowman’ because it’s so calming and listen to a wide variety of Christmas music – from Silent Night to Slade – it’s all part of the experience in a way he can enjoy!
- Edward has few wants, gets overwhelmed by the prospect of piles of presents and any expectation that he has to open them all at one sitting and sit patently watching other people open theirs rather than just opening one and scrutinising it at his leisure, so he generally opens one a day from under the tree throughout the holiday. His Christmas stocking is filled with predictable things he loves – peanuts, raisins, sweets and small sensory ‘twiddle’ toys – and he enjoys opening these, with encouragement, but over the years we have minimised buying any larger items. Instead, we spend money he has been sent on days out that he will enjoy. If family insist on buying a present we play the predictability game – CD’s, DVD’s, jigsaw puzzles and novelty books are favourites that will not make him anxious – but he is very often just as happy with the wrapping paper, like a small child, as with the actual present.
- We don’t go to Christmas parties, visit Father Christmas’s grotto or enter busy shops and restaurants where it would all be too daunting and incomprehensible to him, rather than enjoyable, but we pull crackers, wear paper hats to eat our festive meals and go for walks to look at pretty Christmas trees and decorations in people’s windows and gardens, all of which he copes with and enjoys. This year we may go for a ride on the local Santa Special steam train and one year we took him to Disney on Ice at the NIA, where he tolerated the noise and crowds because he loves music and Mickey Mouse, star of the skating extravaganza. Sometimes we take Edward to church, sometimes we don’t – it depends on how we are all feeling. We don’t feel a need to spend all day every day together so my daughter and I will go to a carol service while the boys stay home; my husband may go to Christmas mass alone.
So if you came to the Attfield household this Christmas you would find a family ‘doing their own thing’ – some things Christmassy, some things not, and giving each other some space. Or you might find us not there at all because some years we have escaped the razamatazz entirely by hiring a cottage by the sea and walking on the beach in Christmas Day – I can thoroughly recommend it! One year we actually went to Disneyland Paris for Christmas, which was magical and a huge success because it had all the elements of Christmas we all enjoy but none of the social hassles – four English people among a sea of French folk who paid us no attention so we could enjoy the parades and the visual excitement of a Disneyland Christmas display without being obliged to talk to anybody else – bliss!
Really, that’s the key to surviving and enjoying Christmas – don’t do what you feel you ought “because it’s Christmas” if you or your child cannot cope. Find a balance that suits you and be prepared to defend your viewpoint even if others say “what a shame!” because you won’t take your family to events that others enjoy but you find a trauma. If you make it work for you, you can truly say “Happy Christmas” and that really is cause for a chorus of Ho, Ho, Ho!! Wishing you all the joys of the festive season – and none of the stress!
Elizabeth Attfield, Autism Quality Development Lead, Priory Group, and mum to Edward (and Sophie!)