Raising a child with autism makes enormous demands on a family.
No one knows this better than Lucy McKinley and her husband Gerry, from Milnsbridge.
Their four-year-old son James, as yet undiagnosed but displaying many of the classic symptoms of the condition, has turned their lives upside down and inside out.
Lucy, a secondary school music teacher until giving up work to look after James and his sister Grace, six, says she suspected her son wasn’t developing as he should but like many parents, she tried to turn a blind eye. His behaviour has always been what she describes as “eccentric”.
“I didn’t want to think there was anything wrong with him,” she said. “And then I blamed myself and thought it was my parenting. I thought that for a long time. You go through a kind of grieving process when it suddenly dawns on you what you are facing.”
The first really worrying sign was that James had started talking but by the age of three appeared to have entirely lost his verbal communication skills.
He was also refusing to answer to his name, wouldn’t follow instructions and wanted to play on his own. Perhaps one of the most devastating problems of all was that he didn’t sleep much. While many parents of young children battle with sleepless toddlers and face growing fatigue, Lucy says they were driven to a “crisis point”.
“He was up at 1am and we were trying to put strategies in place to get him settled and they weren’t working,” says Lucy. “He is now on melatonin (a sleep-inducing hormone) and things are much better. He can sleep really well but occasionally still gets up at 3am and won’t go back to sleep.”
Gerry, a special needs teacher working with teenagers, realised that James was displaying behaviour on the autistic spectrum.
As health visitors no longer routinely visit families with young children, Lucy asked for help from her GP and James was referred for a hearing test, and to see a paediatrician and a speech and language therapist.
“They said he looked healthy and he would be seen again in three months,” she said. “There are a lot of assessments and observations before anyone will label a child. He still doesn’t have a diagnosis and the waiting list to see a specialist is two years long, although they have pushed us on a bit and we should be seen some time this year.
“My advice to anyone with a child who they suspect has a problem is to ask for help as soon as possible because it takes so long to get all the assessments and referrals. We now feel we are in limbo.”
Life with James has been extraordinarily challenging. For example, the McKinleys had to remove all carpets from their home because he has been so difficult to toilet train. They now have hard, wipe-down surfaces everywhere. When they travel in a car he has to be strapped into a special “Houdini” harness because he is able to escape from an ordinary seat belt. Lucy is studying a non-verbal system called the Hanen More Than Words programme, which uses cards and pictures, in order to communicate with James.
“There is a lot of frustration over communication,” she said. “We have a lot of meltdowns. There is also a lot of running away if he doesn’t like something or there is a change in routine. You are always on the alert.”
The family is currently waiting for help from a portage worker, who will teach James basic learning skills. They say that his primary school, St John’s in Golcar, has been tremendously helpful. Lucy says: “James doesn’t have a statement of special needs at the moment but the school has given him a one-to-one non-teaching assistant and are looking into statementing. A lot of evidence has to be collected.”
A few months ago Lucy and Gerry made contact with local parents’ support groups, Parents of Children with Additional Needs (PCAN) and Huddersfield Support Group for Autism. The couple say they have found meeting up with other people who understand their circumstances immensely helpful. One of the trustees of PCAN, Tracey Smith-McQuillan, agrees that early recognition of autism is extremely important and says the fight to get a diagnosis for her 11-year-old daughter Mya was difficult, protracted and damaging.
In fact, it is only two weeks since the Slaithwaite family received confirmation of what they have suspected for several years - Mya is on the autistic spectrum.
Tracey is keen to raise public awareness of autism, in particular the fact it can be so difficult to diagnose in girls and in children who do not display the classic symptoms.
She says that like Susan Boyle, pictured, lots of girls are misdiagnosed or not diagnosed at all,” she said.
“It shouldn’t be about getting a label for your children it should be about addressing a child’s individual needs. But at the moment you can’t get help without a label.”
Tracey, a former course tutor at Kirklees College, where she taught life skills to special needs adults, believes that it is only because of her professional experience and sheer determination that Mya has finally been diagnosed.
Years of meetings and assessments with health professionals, teachers and educational psychologists left her exhausted and frustrated. “Autism is a hidden disability,” she said. “And Mya is very good at playacting, so the signs weren’t picked up.
“Because of my background I have taught her a lot of social skills, but for her it’s an intellectual ability rather than something that comes naturally. She can seem very able but she has anxiety issues that control her life. She is naive and vulnerable.
“But the professionals aren’t listening to the parents, even those with my background. I have been extremely persistent because I know my child and I trusted my instincts.”
Mya, who has a non-identical twin sister Cameron, had a normal infancy but began to display challenging behaviour as a toddler. At first Tracey and her husband Gus, put this down to the ‘terrible twos’ or the fact she was a twin and had to compete for attention.
Then it became apparent her development was delayed. “By the time she got to reception class we were having severe behavioural problems just getting her out to school, “ said Tracey. “But she was very quiet at school and they said they didn’t have any concerns. I started to think that I was the only person who could see what was going on and I began to feel quite isolated. Our parenting skills were called into question but we had no problems with our other children.” As well as Cameron, Mya has an older sister Shauna, 23, and a younger sister Lily Rose, 8.
Tracey is critical of the lack of support the family received at Mya’s first primary school and says the attitude of staff forced them to move their children to the village school at Wilberlee.
“She was refusing to go to school and self-harming. She was extremely unhappy. But at Wilberlee they were super with her,” she says. “They believed us and supported her.”
Tracey is also grateful to the family’s GP, Dr Gemma Simcox, who secured a referral for Mya in November last year to the Elizabeth Newson Centre in Nottingham, which has a specialist diagnostic service.
They have recently learned that while on the autistic spectrum Mya is also showing signs of Asperger’s and Pathological Demand Avoidance. PDA arises because people with autism need a structured routine and to be in control of their environment and so appear to avoid conforming with demands. In addition, Mya has sensory problems and finds it difficult to process stimuli such as touch and noise.
Mya is now a pupil at Honley High School, where she is in a nurture group and doing well educationally. Tracey no longer works as a tutor because of the demands of family and her own health problems but devotes energy and time to PCAN. “I find it tremendously rewarding helping other people,” she said.
Caring for Mya has taken its toll on everyone, including Cameron, who is now supported by a mentor from the Child and Family Trust charity at Northorpe Hall. “Obviously we haven’t had as much time for the other children because Mya’s needs were so great,” said Tracey. “And while I was elated to finally get a diagnosis, it is almost like a bereavement. It has been a long journey.”
But there is a happy footnote to their story. The family recently acquired a golden retriever called Buddy from the charity Service Dogs Europe, who will be a companion for Mya. “He will help her with independence, offer her safety and comfort,” said Tracey. “Hopefully he will be able to go to school with her and will be trained to calm her down. She is calmer already.”
To pay for the cost of ongoing training and his upkeep, Tracey and Gus have created a fund-raising page at www. mycharity.ie/event/my_best_friend_buddy. They will also be holding car boot sales.
The 2009 Autism Act was England’s first specific piece of legislation for disabled people. It was created to promote an understanding of autism and make it easier for adults to get a diagnosis of autism. It also helps adults with autism to choose how and where they live and get the support they need to do this.
Autism affects more than 700,000 people in the UK (that’s more than 1 in 100) but the National Autistic Society says that there are many misconceptions about the lifelong condition. An estimated 460,000 adults with autism are still waiting for support. The society has launched a Push for Action campaign to raise awareness of the difficulties faced by those with autism. Go to www.autism.org.uk/push
The news that singer Susan Boyle had to wait until adulthood for an autism diagnosis has highlighted the problems faced by those who live with the condition but struggle to get help. Two Huddersfield families caring for children with autism say it’s crucial to get the right support as soon as possible