With around 700,000 people living with autism in the UK, one mother from Yorkshire tells Sarah Freeman why a diagnosis isn’t the end of the world.
It was a set of toy dinosaurs which first started staff at Maxwell Andrews’ nursery school thinking. While most of the children would play with them for a few minutes before chucking them on the floor for someone else to pick up, Maxwell was different.
He would quite happily spend hours lining them up and arranging them in colour and size order. “One morning they caught me as I was dropping him off and said, ‘Max isn’t like other children. He tidies up after himself. We think maybe you should think about having him tested for autism’.”
His mother Zoe did think, but initially resisted going down that route. Instead she waited to see how her son developed, but by the time he got to primary school it was clear that her first child was never going to be quite like his classmates.
“At first they thought he might have hearing problems, but that turned out not to be the case. I know for a lot of children with autism the diagnosis can take years, but we were very lucky. It was three years ago that we were told. Maxwell was seven and to be honest the diagnosis felt like a redemption. We’d always known that he was different, but the diagnosis was confirmation, we had something we could tell other people.”
While she hasn’t yet been diagnosed, Zoe suspects her younger daughter Harriet might also be on the autism spectrum. She suffers from bad anxiety attacks, particularly when routines change, and she displays the kind of quirks that many parents of autistic children will recognise.
“She has a problem with clothing labels and while she loves wearing a headband she insists on wearing it right round her forehead. I look at her and think ‘well, that’s just Harriet’. And we love her for it. Girls with autism are often harder to diagnose. They are much better at copying their peers and so often don’t display as many obvious symptoms. I don’t know for sure whether Harriet is autistic, but there are certainly issues.”
Over the last three years, Zoe, who works as a laboratory assistant, has read pretty much all there is to know about autism, she has so far resisted trying out therapies.
“Like any parent, I just want to make sure my children are happy, but I also want them to know that they don’t have to conform to whatever arbitrary idea other people have what is normal. Sleep is particularly difficult and I know there are some who would tell us that we should try to get them into a routine, but I’ve learnt on the job about what being autistic means and I also know what works for us.
“Bedtime is a quiet time and for most children that should be relaxing. However, for my two it can be incredibly anxious when there is nothing to distract them they start worrying about the day ahead and what might or might not happen.
“It means that my husband and I rarely sleep in the same bed and often when Maxwell is fast asleep, Harriet will be wide awake. Yes it can be exhausting, but this is our life and we are making the very best of it.”
While both Zoe’s children attend mainstream school, the holidays when the usual timetable is removed can be particularly testing. “Most children look forward to the holidays, but Harriet and Maxwell find it quite unsettling. We have to make sure that they know what each day is going to bring.”
Zoe, who lives in Calderdale, says that she has found comfort through the local branch of the National Autistic Society and its Facebook support group where parents of autistic children share not only their worries, but also crucially the good times.
“There is a tendency to think that once your child is diagnosed with autism that’s it, you’re left staring into a big, black void. That’s just not true. Autism isn’t the end of the world, it’s just a different world. I don’t think about the future. Not because I’m in denial about what life might be like, but with autism things change so quickly.
“Maxwell has started going to sessions at Ricky’s School of Rock. He loves singing and playing the guitar and his confidence has really improved. Of course there will be setbacks, but there will also be other amazing things that he will try and love.”
Like Zoe, Dawn Crabtree also suspects her two adult children display traits of autism. However, unlike Zoe, so is she. With a higher than average IQ, she initially did well at school, but by her teenage years she found it difficult to fit in. That was three decades ago and she ended up leaving education.
“I never felt like the other girls, but I couldn’t put my finger on what was different. When I was very young it didn’t seem to matter as my family were used to my quirkiness, but when I hit my teenage years things seemed to change and social situations became more complex. I knew I didn’t want to be included in the social groups but at the same time felt excluded if I didn’t try and be a part of them.”
Dawn’s first job was in a printing firm which suited her love of order and precision and by her early 20s she was ploughing all her efforts into being a good mum to two young children. “When I had my own family I was determined that everything was going to work out just fine.” For a while it did, but then a few years ago as Dawn hit 40 things began to unravel.
She admits that she had a feeling she might have autism. She occasionally Googled her own symptoms, including a dislike of bright lights and difficulty sleeping and while there were a myriad of possible causes, what linked them all was autism. However, it was only when she attended the GP with severe depression that her autism was diagnosed. “I guess I covered a lot of things up, but seven years ago it all got laid bare. They told me that on the scale of Asperger Syndrome, which runs from one to five, I was a four.”
Dawn now works as a project fundraiser at Specialist Autism Services in Bradford and life she says is good and she has the full support of an experienced team who help her mange her workload. “I find socialising difficult and the only thing I like watching on television are documentaries, something which is rooted in real life, but that’s fine. My two children are now grown up and both have traits of autism. We have talked about it, but at the moment they are happy living how they are. They are aware though and that’s the important thing.”
Back at the Andrews house, there is one thing that has definitely helped Maxwell cope. Pets. “We’ve got two dogs, Betty and Jeffrey and we got Maxwell a cat. It was partly to give him a sense of responsibility for something and he has been a real success. Timmy basically lives in his room and it has been good for him.
“It was Maxwell who gave Jeffrey his name. I wasn’t sure why at first he wanted to call him Jeffrey, but eventually he told me, ‘I’ve got seven letters in my name, so has my sister and I want my dog to be the same’. You can’t ever get away from autism so you might as well embrace it.”
Learning to live with autism
Autism is more common than many people think. Latest estimates suggest that 700,000 people in the UK are living with the condition.
It is a developmental disorder that affects how people interact with others. A third of children with autism say the worst thing about the condition is being picked on by their peers.
Nearly a fifth of autistic children have been suspended from school - half of them three times or more.
Only 15 per cent of adults with autism are in full-time paid employment.
Specialist Autism Services in Bradford was set up in 1999 and works with adults on the Autism Spectrum across the Yorkshire.
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