Boyzone singer Keith Duffy reveals how his daughter's autism nearly tore him and wife Lisa apart

5th May 2009

http://www.dailymail.co.uk/health/article-1177240/Boyzone-singer-Keith-Duffy-reveals-daughters-autism-nearly-tore-wife-Lisa-apart.html

The moment their baby says its first words is etched in every parent's memory.

For Lisa and Keith Duffy, it was a heartbreakingly long wait before they heard their daughter Mia speak for the first time.

In March 2005, just after her fifth birthday, Mia finally talked - or rather, sang. 'She came bounding into the lounge where we were sitting and proudly belted out Tomorrow from the musical Annie,' recalls Boyzone singer Keith.

'Although she loved musicals, this was the very first time we'd ever heard her voice; before she'd only been able to babble incoherently.

'We were so proud - the tears were streaming down our faces. I'll never forget that day as long as I'll live,' he says.

Mia has autism, a developmental disorder which affects her ability to relate to people and situations.

Despite the fact that around half a million children and adults in the UK are affected, treatment for the condition is woefully underfunded, according to the National Autistic Society (NAS).

'The services and support available to people with autism and their carers are often hugely inadequate,' says Caroline Hattersley of the charity.

'There can be an agonising wait for up to two years to get a firm diagnosis. The autistic child suffers, the siblings suffer and often previously solid couples crack under the strain.'

As Keith and Lisa know from experience. 'Lisa and I also went through a very difficult few years in our relationship when Mia was diagnosed,' admits Keith, talking frankly for the first time about this.

'There were times when I felt like walking away, but I didn't because there was no way my children were being raised in a broken home.

'When she was born on March 11, 2000, a tiny, bald six-pounder, I was overcome with emotion. We had a fantastic first 12 months with her, marred only by sleepless nights, but that's hardly unusual.'

'I first had my suspicions that something wasn't right when Mia was 16 months,' he says.
This is often when the first signs of autism emerge because of missed developmental milestones such as talking and engaging with others.

'She developed an obsessive compulsion for structure and symmetry - we'd often find her arranging our CDs in a straight line across the kitchen floor. If I called her, she completely ignored me.

'Lisa and I just thought she was being a cheeky madam. Our son, Jordan, had speech and hearing problems when he was a toddler, caused by fluid in his inner ear. We thought Mia could be the same. But a specialist said Mia's hearing was fine.'

However the Duffys remained convinced something was wrong. Despite not sleeping well, Mia was hyperactive when she was awake - she never ran out of energy and refused afternoon naps.
'Mia also wouldn't return Lisa's affection, which was heartbreaking for her,' says Keith.

She would also often prefer to play by herself in her room - 'she seemed terrified of the noise when we went out.

'I kept asking my GP questions and spent hours on the net, pouring over her symptoms,' recalls Keith.

'The word autism kept cropping up, but I didn't want to accept that as a diagnosis, I suppose my fear brushed it away.'

The breakthrough came by chance in September 2001. It was the height of Boyzone's fame and a family friend asked Keith to pose for pictures at charity golf event to raise money.

'Afterwards, on the way back to the clubhouse, I got talking to one of the charity founders who told me he and his wife had started a school for children with autism.'

As they talked and described what autism involved, it became obvious to Keith that this was exactly what Mia had.

'I struggled to hold myself together,' he says. 'In one way it was a relief to know what was wrong, but I was also really afraid for Mia.'

'When I told Lisa my fears had been all but confirmed, she was so shocked she slapped me across the face and then burst into tears.'

The family wanted an official diagnosis, but were astonished to find it could take between 18 and 24 months because health services are so overstretched.

Early diagnosis is vital; children with autism are usually treated with a combination of speech, behavioural and other therapies - early intervention means it's easier to change their habits before these are entrenched.

Rather than wait, the family went to a private specialist. 'It was awful,' recalls Keith. 'He didn't look at Mia once while firing off hundreds of questions to Lisa and me.

'In the end, he shoved some sheets of paper at us, saying: "Your child's autistic. Read this, it'll tell you what you need to do."

'And that was it. There was no feeling, no sympathy, no kind words. We felt abandoned, with no idea of who we could turn to for support. Lisa was distraught.'

Over the following year, the couple dealt very differently with Mia's diagnosis. 'Lisa became depressed and blamed herself.

'Having no control over what was happening to Mia, she threw herself into controlling things around the home; the house would be immaculately cleaned, and then she would do it all over again.

'Being a typical bloke, I wanted to fix things so I'd be channelling my anger productively. I had been a boozing nutcase in Boyzone who took very little seriously, but after Mia's diagnosis I had to grow up fast.

'The sheer frustration of knowing we had to act fast to make a difference and knowing how many thousands of other parents out there were facing the same situation spurred me into action.'
As well as becoming involved in charity events, Keith joined the board of the charity Autism Action.

'I was also determined to get Mia into a suitable school,' says Keith. 'But in early 2002, there was only one in Ireland for autistic children, Abacas in Kilbarrick, and it was already full to capacity with 12 children.

'I got Mia on the waiting-list but we had 11 children in front of us. The school literally existed one year at a time on a government grant of around £300,000.

'But after organising a committee of parents, we raised funds to expand it, and by the end of that summer we'd managed to get the extra 12 kids, including Mia, then aged two and a half, a place, as well as a further 12 teachers.

'This was a real turning point for us as a couple. At last we felt Mia was getting the best help possible, which relieved our feelings of helplessness.

'We realised we had to start talking to each other without the tears and recrimination. Lisa stopped mourning for the child she had been expecting to have and embraced the child we did have.'

It took another two years, he says, before their relationship was completely back on track.
Meanwhile Mia flourished at her new school. The Abacas school uses a technique called Applied Behavioural Analysis (ABA), a personalised one-on-one programme which involves breaking down normal tasks, such as getting dressed, into small achievable steps.

With the help of her teachers, Mia's ability to engage with other people improved; she also became better able to express herself.

'In the beginning Mia couldn't speak and didn't show any affection,' recalls Keith.
'Jordan used to come to me and say: "Why doesn't my sister love me? Why doesn't she speak to me?"'

But gradually her behaviour improved, including her response to her family. A couple of months after her fifth birthday Mia felt comfortable enough to give and receive cuddles from her parents and brother.

By the summer of 2007, her progress meant she could make the leap into a mainstream school.
Naturally it was an anxious moment for her parents when Mia, then seven, walked through the school gates for the first time that September.

'We were worried how she'd integrate, but as we peaked through the window of the classroom we heard her say: "Hi guys, I'm Mia Duffy,"' recalls Keith.

'Upon seeing the only free desk in the room, she said: "That seat must be mine", strode over, and said to the kid beside her, "Hi, what's your name?"

'That floored us - just two years ago Mia couldn't talk and wouldn't interact, yet had now developed into a self-assured young girl who sees the good in everyone.'

Keith has helped open 13 ABA schools in the Republic of Ireland and Northern Ireland, and is turning his attention to Britain.

He's also helped found a new diagnostic centre, the Solas Centre, in Dublin, to improve the speed of diagnosis.

'Those two years after Mia's diagnosis were an awful time for Lisa and me as a couple, but we fought hard to stay together and I truly love her more now for it. I want to help other families avoid what we went through.'

And Mia? 'Our hopes for her have changed from the ones we had when she was born. Once, we had her whole future mapped out - now we just want her to be happy, sincere and independent.

'The most important thing is that we've all found happiness again.'