Why love and understanding matter so much

JUST two more sleeps to go . . . as Christmas draws closer, excited children everywhere are counting down the hours until Santa comes.

But while most little boys are looking forward to meeting Santa at his grotto, ripping into parcels and tucking into Christmas dinner, for Caidan Henretty the very things that make the season so special could also tip him into sheer panic.

“All those things most parents take for granted, like taking their son to have his picture taken with Santa or going to the pantomime, we can’t do,” says Caidan’s mum, Laura. “It’s not worth it for the upset it would cause him. It’s every child’s right to enjoy Christmas. But for Caidan, Christmas time can be frightening, distressing and disorientating.”

Caidan, who is two-and-a-half, was diagnosed with autism when he was just 18 months old. It means that even subtle changes to his daily routine can leave him confused and upset.

Treats that bring Christmas to life – like brightly-coloured presents, the snap of a cracker and even the pretty flickering of tree lights – can spark distressing reactions as he struggles to understand what is going on.

It is also why Caidan won’t wake up on Christmas morning to scores of brightly-wrapped presents – the patterned paper, the uncertainty of what’s inside, all part of the fun for most children, would be overwhelming.

And while other children might be thrilled with toys that beep and buzz, electronics are off Caidan’s Christmas list because the sudden noises and bright lights could overload his senses.

“Last year was awful,” recalls Laura, 44. “I have a small family but when I took Caidan to our get-together he had a complete meltdown. The change to his routine, the prospect of sitting in a chair he’d never sat in before, and the whole family together in one place in an unfamiliar scenario was more than he could cope with.

“He became overloaded and very distressed,” she adds. “My mum ended up taking him to a separate room where we spent the rest of the afternoon trying to calm him down. We wolfed down dinner, went home and Christmas was over.

“Although Christmas can be stressful for families, many look forward to those special, magical times – waiting for Santa to arrive, excitedly unwrapping presents or tucking into a lovely Christmas dinner. But for someone with autism, the change in the daily routine at Christmas time can be frightening. The upset can spread throughout the family.”

Autism is developmental disability that affects an estimated 50,000 people in Scotland, with 5000 of them thought to live in Edinburgh. It is a life-long condition that affects how a person communicates with, and relates to, other people. It also affects how they make sense of the world around them.

One way many people with autism try to reassure themselves in an unpredictable world is through creating regular routines, which means unexpected events can become very challenging. They often experience hypersensitivity to sounds, smells and colours, which can result in sensory overload and cause alarm and panic.

Caidan was diagnosed nearly a year ago at the remarkably young age of 18 months, after Laura and husband Paul, 42, a field service engineer, realised he wasn’t just failing to meet his developmental milestones, but starting to regress.

Laura, who is also mum to Kirsty, 16, said: “He didn’t sit up or roll over until he was 11-months old, and didn’t start crawling until 14 months. Then, alarmingly, at 18 months he started to regress. He stopped speaking and lost the ability to pick up his food.

“I suddenly found I was feeding him baby food again. When I took him to mother-and-toddler groups he would sit at my feet and do what’s known as “stimming” – making repetitive movements that seemed to comfort and reassure him. If someone approached Caidan, he would turn away. “None of the professionals were mentioning the word autism, but I started to research Caidan’s behaviour, and the more I read, the more the term autism came up. I shared my concerns with my paediatrician and was put in touch with a dedicated autism team in Edinburgh. Caidan was diagnosed shortly afterwards.

“Before Caidan’s diagnosis I didn’t have a clue about autism and had no idea how individual the condition can be. I thought a child with autism would be unemotional, withdrawn and unable to look at you,” she adds.

“But Caidan is absolutely nothing like that. He makes a lot of eye contact and can come across at times as a very excitable two-year-old. At times people who don’t really understand autism make thoughtless comments about Caidan’s behaviour. This can be hurtful at times, but I try to be patient, and remember that once I might once have thought like them, too.”

She has had support from the National Autistic Society Scotland and Edinburgh city council’s Visiting Teaching and Support Service, which has provided play therapists, speech and occupational therapists to help Caidan’s development.

And he has made progress – he can count to 100 in tens, recognises colours, shapes and is fascinated with animals.

“I’ve received some fantastic help and support from a dedicated autism team in Edinburgh. It’s made a world of difference,” says Laura.

“I can’t praise the team highly enough for putting me in touch with services that have really helped and supported Caidan. The progress he has made in just seven months is nothing short of amazing. At 18 months he lost the ability to speak. Now he can ask for milk, for breakfast and let me know when he would like to go to bed.”

Christmas, however, brings a fresh set of challenges at the family home. “Less is always more with Caidan, so we’re just giving him just one or two presents to focus on on Christmas Day. I’ve bought a few extra ones, but have been introducing these gradually during November.”

National Autistic Society director Dr Robert Moffat says many families affected by autism will face similar restrictions at Christmas.

“Many will recognise that while Christmas can be fun and exciting, for some it can be a stressful experience. At this busy time of year, if friends and relatives can spare the time to show a little understanding, it can really make a world of positive difference to the Christmas experience of someone with autism.”

And Laura is determined that Caidan will still have a wonderful Christmas.

“It’s just a different world,” she shrugs. “Your child is still funny and lovely and delightful, you just have to try to adapt so you can reach out, and understand them.

“Yes autism is frustrating but it’s also beautiful – with Caidan we take nothing for granted and everything he does is celebrated. I can’t imagine a more loving and beautiful boy.”

• For more information about autism, visit www.autism.org.uk/scotland.