Autism girl heads awareness drive|
CARDIFF, Wales: When doctors told Jo Salmon her daughter had autism, she was devastated but relieved. The 37-year-old mother of two from Caerphilly cried tears of sadness and relief.
After five years suspecting daughter Holly had the condition that makes communication hard, she says it was still difficult to have it confirmed. But she was glad to hear Holly’s problems weren’t caused by bad parenting or behaviour, as some had said.
Holly, now 11, was diagnosed last year after a five-year struggle. Jo believes it took so long because autism more often affects boys.
“When I heard the words I collapsed in tears,” she recalls. “It was a relief but half of me wanted them to tell me my child was naughty because you can’t ‘recover’ from autism.
“We went to a very dark place for a long time. Autism turns parenting on its head. You have to learn new strategies.”
Jo says living with Holly’s autism is still hard, but they’re coping and getting help.
She has fortnightly visits from a specialist nurse and attends a mainstream high school with support.
They’re also planning Holly’s Ball, an event to raise awareness about autism, which affects 25,000 people in Wales.
Holly’s Ball, which will be held at the Millennium Stadium next year, is being launched at the National Assembly on November 2 when Holly will give a speech to AMs via DVD. She’ll also be the Wales rugby team mascot for their game against Fiji on November 11.
The ball was Holly’s idea after she was disappointed to find no events were held for National Autism Day in Wales this year.
“I said to her: ‘Why don’t we do something?’, Jo recalls, “and she said ‘Let’s have a party with posh dresses’.”
Jo contacted her Caerphilly AM, Jeff Cuthbert, who agreed to host the Assembly launch. Jo hopes Holly will overcome anxiety caused by her autism enough to enjoy the event.
“We get up at 5.30am before school because Holly has all these rituals to go through,” she explains. “She’s done a day’s work before she leaves the house but it makes her feel better.”
Holly also finds it hard to make friends or hold eye contact, needs to know in detail what’s happening each day and has sensory problems. Loud noises and certain fabrics also upset her and she has rituals for getting up and going to bed.
Jo first suspected something was wrong when Holly was a baby.
“She cried a lot and was hard to settle but we noticed something was definitely up when she was about eight months old,” Jo says.“Holly had an Avent bottle and had to have her fingers on the A and the T or she wouldn’t drink it. It used to make us laugh.”
When Jo tried to dress Holly she became very upset, signs of the sensory problems that continued with the autism, Holly now dislikes wearing certain fabrics, having her hair cut or being touched lightly.
And she doesn’t make friends easily. "She’d be on her own at playgroup,” Jo remembers. “Then I watched her in school aged four and she was spinning and walking around by herself in the playground. It broke my heart. All you want is for your children to fit in.”
When Holly was five, her GP referred her to the Child and Adolescent Mental Health Team CAMS in Ystrad Mynach.
They said Holly didn’t have Asperger's syndrome, a form of autism, and when things improved signed her off.
When things got worse again, Holly was referred back to various mental health teams where, Jo says, some professionals were unhelpful and dismissive.
“I was told by one, when Holly was eight, that she was manipulative and a drama queen. They expect girls to be highly strung, so a lot of what was going on wasn’t taken seriously. I also taught her to make eye contact with people. That’s learned, it doesn’t come naturally to Holly and she’s told me now that she finds it painful.”
Holly was finally diagnosed in February 2009.
“I’ve been angry for years that I wasn’t taken seriously as a parent,” Jo says. “I wasn’t over anxious, as I was told, I was justified. If Holly had been diagnosed at five instead of 10 she wouldn’t need the help she does.”
On an Autistic Spectrum Disorder scale of one to 10, with 10 being the most extreme, Holly is two. Although this sounds less serious, the reality is hard.
Jo says she and husband Robert split under the strain of diagnosis and son Ben, now 10 himself, often has to calm Holly.
“She has meltdowns that can last 30 minutes to eight hours,” Jo explains. “She has rituals at bedtime and asks lots of questions which Ben answers and tries to calm her. He loves her to bits but says he wishes she didn’t have what she has.”
Jo has always been open with Holly about her autism.
“She was in denial for a long time. She thinks we’re the aliens. She calls us aliens,” Jo laughs. “I told her she had autism and said Mummy and Daddy would try to make it easier.”
(Source: South Wales Echo, October 26, 2010)