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The family way
7:00am Saturday 20th October 2012 in Lifestyle
Mum Sophie Walker talks about her new book Grace Under Pressure, a frank memoir of how her life unravelled when her daughter Grace was diagnosed with Asperger's Syndrome, and how running a marathon helped her cope.
By Lisa Salmon
Mum Sophie Walker always knew that her daughter Grace was different.
Finding out that the difference was caused by Asperger's syndrome, an autism spectrum disorder, forced the devoted mum to fight for years for the help her daughter needs.
"People would say she didn't look disabled and she didn't look like there was anything wrong with her," remembers Walker.
"It would drive me mad. Of course there's nothing wrong with her, but there are areas where she needs help, and people's misunderstandings about autism and Asperger's made it so hard to get it."
The battle for help was so tough, and yet so typical of the experiences faced by many parents of children with Asperger's, that Walker has recorded it all in her new book, Grace Under Pressure.
The book was written after her internet blog of the same name (www.courage-is.blogspot.co.uk) was so well received by other parents.
In the book, Walker describes how, after a nursery teacher pointed out that Grace was 'different' at the age of two, it took five desperate years to secure an Asperger's diagnosis for her.
"Five years of waiting lists, inconclusive assessments, repeated questioning and a lot of shoulder shrugging," remembers Walker, a journalist.
"I felt very guilty about it and felt that it was something I should have spotted and been able to help her with much earlier.
"And I felt at a loss to know what to do next, because we were given the diagnosis and not much else.
"The diagnosis didn't automatically lead to getting any help for her - that was another battle we then had to start."
Grace is one of an estimated 500,000 people in the UK with a form of autism - that's around one person in 100.
Her type of autism, Asperger's, affects how a person makes sense of the world, processes information and relates to other people. Those affected have difficulties in three main areas: social communication, social interaction, and social imagination.
"Grace doesn't understand things like sarcasm and irony and sees everything very much in black and white," explains her mum.
"She doesn't get the back and forth of playground banter, so she was very much a target for bullies."
While there are similarities with autism, people with Asperger's have fewer problems with speaking and are often of average, or above average, intelligence.
Grace has high-functioning autism, meaning she excels in certain areas including art, drama and music, but has problems with some other subjects.
Many people with Asperger's have specific learning difficulties, such as dyslexia, or other conditions such as attention deficit hyperactivity disorder (ADHD). Grace has dyscalculia, which means she struggles with maths.
"There are certain things in class she doesn't understand - she's very articulate, artistic and creative, but she doesn't understand concepts involving numbers, and that was very stressful for her.
"Combine that with the bullying and the general sense of her feeling isolated, and I could see her fading in front of me. Her self-esteem was very bashed.
"I felt very lonely and isolated, and my daughter was very unhappy. As any parent knows, there's nothing worse than seeing the most precious thing in your life becoming beaten down, and seeing the light start to fade from her."
After a very long, stressful fight, during which Grace's school was initially refused extra resources to help her, she finally got a statement of special needs from her local authority this year.
The statement is a formal document detailing a child's learning difficulties and the help that will be given, and it means that Grace, 10, now has a local authority-funded assistant with her constantly at school, helping her with both academic and social difficulties.
"The difference it's made is amazing," says Walker.
"Instead of a pale-faced, unhappy child who threw herself into my arms every day after school, she comes out of school smiling, with gold stars.
"She's a different child. It feels like we've got her future back, and it's wrong that we had to fight so very hard for it.
"I really hope that the book shows other parents that you can do it. But you have to educate yourself, develop a very thick skin, and don't take no for an answer."
As the battle to secure help for Grace raged, Walker was diagnosed with depression.
She started running in a bid to help her cope, and got so much out of it that she ran two half-marathons and this year's London Marathon to raise money for the National Autistic Society (NAS). She has now raised more than £6,000, and is an NAS ambassador.
"I had taken up running as a way of dealing with my very precarious mental health - I was really struggling to be strong enough for my daughter," she explains.
"It's been an absolute lifeline for me - so much of this has been so deeply emotional that it's been good to do something practical that helps others as well."
Amanda Batten, director of external affairs at The National Autistic Society, says the charity is "incredibly grateful" for Walker's support, and points out that her struggle to get help for her daughter is mirrored in many families with autistic children.
"It's vital that those with Asperger's get the support they need so they can reach their full potential," she says.
"Sadly, many parents will readily identify with the battles Sophie has taken on for Grace. Some schools do a fantastic job of meeting the needs of children with autism, but all too often we hear from families who struggle to access the right help."
She adds: "Grace Under Pressure is an inspirational account of Sophie's relationship with Grace and is a must-read for any family touched by autism."
:: Grace Under Pressure is published by Piatkus, priced £13.99. Available now. For more information about autism, visit the National Autistic Society website on www.autism.org.uk, or ring its helpline on 0808 800 4104
Ask the expert
Q: "My seven-month-old baby is still a terrible sleeper and I'm exhausted. If I try sleep techniques such as controlled crying, are they likely to harm her? I'm worried it may upset us both."
A: Dr Anna Price of the Murdoch Children's Research Institute in Australia recently led a study into how sleep techniques used with babies affected them after the age of six.
She says: "Now that your baby is older than six months of age, it's fine to try sleep techniques such as controlled comforting (also known as controlled crying).
"Controlled comforting involves settling your baby in her own cot and then leaving her for increasing time intervals to settle by herself. It doesn't involve shutting the door to let her cry it out.
"Research has shown that this technique not only improves infant sleep but also reduces mothers' depression. These benefits can last up to two years.
"Research also shows that controlled comforting is safe. We recently ran a study to look at whether the technique has long-lasting effects up to when children turn six years old, and found that controlled comforting has no effects on children's later emotional development, their mental health or stress levels.
"For step-by-step information on how to do controlled comforting and other sleep strategies, go to www.raisingchildren.net.au, a free website which gives current evidence-based information on child development."
Keep it tidy!
Worlds Apart Six Bin Storage
This strong-framed set of fabric storage drawers, featuring popular characters including Disney Princess, Spider-Man, Peppa Pig and Minnie Mouse, is perfect to pop the kids' toys in. Available from Mothercare, Tesco Direct and Amazon, £49.99.
My 1st JCB Skip Toybox
Mums and dads who feel like just throwing their untidy child's toys away can go for a less controversial tidying solution by asking the kids to chuck their possessions in this JCB Skip Toybox. Available from Amazon, Tesco and Mothercare, £25.
Mustard Toxic Laundry Bin
Kids' dirty clothes can be awful, but a suitable place to dump them before they're washed could be this pop-up polyester Toxic Laundry Bin, with its warnings of 'Caution' and 'Radioactive Materials'. Available from www.justmustard.com, £11.99.