They’re terrified of tinsel, cry at carols and HATE Santa. How autism robbed our boys of the joys of Christmas
Claire Mumford would love – just once – to see her two youngest sons rifling through a pile of gift-wrapped presents on Christmas morning.
She and her husband Mark would be overjoyed if Jack, seven, and Sam, five, raced into the living room and began ripping off the wrapping paper from the dozens of toys and games that Santa had left under the tree.
Sadly, this is unlikely ever to happen. Jack and Sam – like more than 100,000 other children in Britain – have autism, a lifelong developmental disability that impairs communication skills, social interaction and imagination.
Coping: Mark and Claire with Sam, five, and Jack, seven, who both have autism
Day-to-day life presents constant new hurdles. But Christmas, with its whirl of parties, festivities and traditions – the very things that most people enjoy – can be particularly difficult. Indeed, the season of goodwill often upsets and confuses autistic children, who prefer a fixed daily routine with few surprises.
They have no concept of what Christmas is about, the efforts family and friends go to or the excitement of giving, receiving or opening gifts.
Claire, 34, a personal support assistant, and Mark, 44, a warehouse manager, have taken years to accept that a family Christmas will never be quite what they imagined.
‘I love this time of year, so when I had children I imagined a traditional family Christmas like the ones I used to have in my childhood with lots of presents and games,’ says Claire.
‘When the boys were younger, I remember staying up until the early hours wrapping toys and putting them under the tree. In the morning, however, Jack and Sam found all these gifts too overwhelming.
‘Instead of excitedly ripping off the paper, they ended up crying and screaming because they couldn’t understand what was happening.
‘It was heartbreaking. Much as we love them, it brought home to me just how unlike other children they are. Often at this time of year, I’ve sat and sobbed, thinking: “What is the point?”
‘But we have our eldest son Adam, 12, who is not affected by autism, to think about, so Mark and I love to make an effort for him. And things are improving.’
Claire and Mark have developed coping strategies with their two youngest children that help them deal with the change in routine over the festive period.
‘The hardest part is the presents. Jack and Sam prefer to have just one thing – usually unwrapped, so it’s not a surprise,’ says Claire.
‘They can get overwhelmed by surprises or too many presents. We try to get them to open other presents, but they get distressed by the novelty. If a toy is in packaging, we have to take it out because they don’t understand why they can’t play with it straight away.
‘Instead of excitedly ripping off the paper, they ended up crying and screaming’
The same goes for toys that need batteries – they have to be working immediately or the boys get confused.
This year, Jack would like a toy washing-machine and Sam likes toys he can play with on his own with, such as a doctor’s set or toy work bench.
‘Even so, they have no understanding of the joy of receiving presents. I once went to a store’s toy department with Jack to choose a gift and the place was crawling with children having a whale of a time.
‘I lost him for a split-second and when I found him he was looking at washing machines. It broke my heart – I just wanted him to experience the same thrill that other children get when they open a present.’
Claire and Mark’s situation is far from unique. There are thought to be more than half a million people in the country with autism.
It’s a complex condition affecting around one in 100 people in Britain, usually males. It is sometimes referred to as autism spectrum disorder, or ASD, because the condition affects people in different ways. Some are able to live relatively everyday lives while others require a lifetime of specialist support.
Jack was diagnosed autistic just before his third birthday. At first, health workers thought there may be a problem with his hearing, but Claire suspected it could be something else.
‘You could call him until you were blue in the face and he’d just ignore you, but as soon as you rustled a packet of biscuits, he’d look your way, so I knew it could be his hearing,’ she says.
‘Autistic children are not responsive to vocal commands, but he knew the rustling of the packet meant there must be biscuits nearby, which is why he responded.
‘We saw a specialist and Jack was diagnosed within five minutes. He had all the classic signs, such as lack of eye contact, hand flapping, a need for routine and delayed speech.
Challenge: The family, here pictured with oldest son Adam (far left), copes with Sam having at least three tantrums a day
‘It hit my husband Mark like a ton of bricks because he’d refused to believe that was the problem.
‘But for me, it was like a weight had been lifted off my shoulders. We now knew why our little boy didn’t walk until he was over two, never cooed or babbled in his cot and cried constantly.
‘I just thought he was a difficult child, but this diagnosis gave us the answers. It was a relief, but then it was almost as if I was grieving for the child I once had.’
Two years after Jack’s diagnosis, Claire fell pregnant again and gave birth to another son, Sam.
‘We got him checked out just in case after his second birthday and he was also on the autistic spectrum. It felt unfair that both boys should be affected. Jack is more classically autistic than Sam, but is easier to deal with because he’s more amiable.
‘We’ll have at least three tantrums a day from Sam – it could be because I’m not singing Old MacDonald in the car – which I do to distract him from the sensory overload a journey can cause – or the fact I’ve wound up the window when he likes it open.
‘He’ll scream and bash the window with his head and hands and will go purple with rage. It’s extremely distressing. Sometimes he can get so tired and distressed that he can bring on a seizure.
‘Jack, meanwhile, loves being naked. As soon as he’s home from school he’ll take off all his clothes and just run around in his T-shirt. He only keeps that on because he does not understand how to take it off. Wanting to be naked is common in autistic children, apparently.’
But if everyday life is testing, Christmas can be doubly difficult.
‘The boys hate crackers and partypoppers – they get distressed if there’s a loud bang,’ says Claire.
‘Sam loves singing, but only on his own. If other people are singing – such as carol singers – he screams the place down.’
Like Claire and Mark, Sue and Iain Saunderson have had to approach Christmas differently in order to deal with their two sons’ autism.
Their youngest son Lee, nine, was diagnosed when he was three. Their eldest son Jamie, 14, was diagnosed with a different form of autism, Asperger syndrome, as well as ADHD (attention-deficit hyperactivity disorder) when he was eight.
‘We have to put up the decorations gradually over seven to eight days, so as not to startle the boys with a sudden change,’ says Sue, 37, a volunteer who lives in Trowbridge, Wiltshire.
‘We start with a few cards, then a bit of tinsel and a few decorations at a time. If we change the room overnight, the children don’t like it.
‘We used to have a Christmas tree with baubles and lights, but Lee found this distressing because it was too loud and busy.
‘So now we have a fibre-optic tree. Lee finds this particularly soothing – we’ll often turn the other lights out and just sit watching the fibre optics change colour.’
Not to be: Claire had imagined a traditional family Christmas with lots of presents and games (picture posed by models)
The couple have discovered a novel way of helping Lee and Jamie deal with unexpected events.
‘We use a card with a big yellow star on it called the “surprise card”. We carry it with us on journeys and have taught the boys that if we show them the star it means a surprise is coming up – and that a surprise can be a nice thing, not an alarming one.
‘For instance, if we’re diverted on our usual route to my parents on Christmas Day, we’ll show the boys the surprise card.
‘It’s the same with presents. If we think they’re going to be scared or overwhelmed by too many presents, we’ll show them the surprise card.
‘Last year, I asked Jamie if he preferred getting only one or two presents a day over Christmas. He said he would love it.
‘We’ve learned many tricks over the years. Christmas with autistic children can be just as special, it’s just different.’
By: JILL FOSTER