Riverdance couple’s anger their daughter got little help from State after autism diagnosis
No options for those who can’t afford private therapy, they say
Riverdance stars Niamh O’Connor and Padraic Moyles – who are parents of a seven-year-old girl with severe autism – have said the health system is hopelessly illequipped to deal with the complex and varying needs of children with the condition.
And they say ‘there’s no way she would be the person she is today’ without private therapy.
The couple consider themselves lucky to have been able to fund daughter Juliette-May’s treatment – in excess of €30,000 a year at its peak – which has meant she has developed enough to attend a mainstream school.
‘But there are so many other parents out there who just can’t afford to do that,’ says Padraic. ‘And that’s what’s so devastating about this.’
The couple, who spoke to the Irish Mail on Sunday to raise awareness of autism charity AsIAm during World Autism Month, praised HSE workers on an individual level, but described a system that falls far short of the children’s needs.
‘It was more educating us, which we know needed to be done,’ says Niamh of the support programme laid out by the HSE after JulietteMay’s diagnosis, aged two. ‘But there wasn’t enough one-on-one therapy.
‘All these things were marked urgent on her diagnosis but yet they saw her few and far between from when she was diagnosed till they finished up with her by four. She’s now almost eight and hasn’t been seen by the HSE since she was four.’
Padraic says they got a letter before the pandemic acknowledging that Juliette-May was now in the school-age category.
‘The letter said they’d endeavour to see us within the next 36 months. That’s three years. You can’t wait for that.’
The limits of the public route prompted the couple to seek private therapists. She was getting around 20 hours of one-to-one therapy before starting school.
‘I called a guy in America who’s on the autism board there and his advice was, “This is your child’s university”. The science says with autism that early intervention from the ages of two to six has the biggest impact. If they’re not being seen at that point, they’re probably not going to achieve their full potential.’
After ‘hitting all the milestones’ – crawling, speaking – JulietteMay’s parents became worried when she reached 14 to 18 months.
‘From her not being excited when we came home from work, to not responding to her name, to not eating properly, to gazing into space without any sort of emotional connection to us,’ explains Padraic. ‘We eventually got an appointment with the HSE and they diagnosed her with quite significant autism, and they knew right away.’ ‘They were saying she might not speak again, she might not go to school,’ says Niamh. The couple say the therapy sessions went from Juliette-May crying and screaming constantly, to her learning to sit in her chair and feed herself, and event udemic ally meeting therapists at the door to lead them upstairs by the hand.
‘Those therapists were so brilliant and so patient,’ says Padraic. ‘They knew what they were doing.’
She slowly began to engage emotionally with her parents and with her younger brother too.
Even with professional help, Niamh describes caring for Juliette-May as ‘a lot of work all the time’, but she says her school – St Brigid’s in Castleknock, Dublin – has been ‘absolutely incredible’.
Juliette-May attends a mainstream class but has a full-time special needs assistant (SNA).
‘We’re lucky that she’s extremely clever and is well able for the aca FORMER side of school,’ said Niamh.
‘But the other issues that arise with autism – sitting in a classroom for that long, listening to the teacher, participating in a classroom setting – she’s not wired like that so that’s why she needs an SNA to guide her, to prompt her. Otherwise she would just potter off on her own little adventure.’
Niamh and Padraic say they worry now about the future.
‘I’d love to know that the supports would be there right through secondary school, and our aspiration for Juliette is to go to third-level education, if that’s what she wishes. To get a job, to be able to be financially independent, get a mortgage and be able to look after herself,’ says Niamh.
‘Because what we worry about now is, who’s going to mind her? Who’s going to be her support if something happens to us?’
‘Early intervention has the biggest impact’
‘She hasn’t been seen since she was four’