'Hearing my son say 'daddy' after six years was overwhelming'
Ahead of Autism Action Month, one family living with autism tells us how, thanks to local supports, their 15-year-old son Ryan is making them prouder everyday
Published 29/03/2016 | 02:30
Autism affects people in different ways, with some having a more severe form than others - but the neuro-developmental disability is lifelong and causes difficulty for people to communicate, make sense of the world around them and form relationships.
Research is ongoing, and earlier this year scientists in the US believed they had discovered cells which play a role in how the disorder develops in the brains of babies.
By blocking cells which produce a chemical called IL-17a in pregnant mice, researchers were able to restore normal brain structure in the brains of their young. This breakthrough goes someway to show how viral infections during pregnancy can play a role in how autism develops - so the findings take a step towards treatment or potentially even a cure for the disorder.
But in the interim, thousands of families throughout Ireland are living with the condition and Irish Autism Action is there to provide support and advice. On April 3, the charity will be hosting a fun run to raise funds and fundraising manager, Niall Murphy, urges people to take part as he says learning to cope with an autistic child can be a very difficult hurdle to overcome, particularly as the condition can take some time to be diagnosed.
"When our eldest child, Ryan, was born 15 years ago, we didn't know straight away that there was anything wrong with him," says the Offaly father. "He passed all of his developmental checks when he was very little - was walking at 12 months and babbling away as he should have been. But even though my wife Noeleen and I thought there was something not 100pc right, neither a GP nor a public health nurse (PHN) wanted to put a label on him.
"But just before he reached his second birthday, we noticed that he didn't seem to be interacting properly with people and also he didn't respond to his name and would run off by himself if we didn't keep a tight hold on him - he just seemed to be in his own world."
Niall and Noeleen, who also have two daughters, Ciara (13) and Jennifer (12), remained concerned about their son's development, despite assurances that he was doing fine. But by the time he had turned three, they decided to take matters into their own hands.
"For the first three years of Ryan's life, we had voiced our concerns on several occasions but were told that boys were naturally slower at developing and there was nothing concrete which showed a problem," says Niall.
"But we went to Kerry for a holiday when he was three and as soon as we arrived, he started to roar crying and didn't want to leave the car.
"We realised that he didn't like the different environment and as soon as we got back, we put the wheels in motion to get him on a waiting list for assessment. But after several months of waiting, we decided to get him assessed privately and he was diagnosed straight away with autism."
Now that the couple had a diagnosis for their son, the next priority was finding a school which would help him to maximise his potential.
"Ryan was nearly four by the time he was diagnosed with autism," says Niall. "We needed to get some help for him and while there was talk of setting up a school relatively close to us, the only one we could find at the time was 32 miles away.
"So although it was a very long drive, we had no choice but to sign him up and for 10 months drove almost 70 miles on country roads every day - it was a nightmare and he really found it difficult to be in the car for that length of time.
"In July 2005, we decided that we couldn't keep up the daily journey and luckily the special school in Mullingar was almost at completion, so we fundraised like mad and in February 2006, he became one of the first students at Saplings, which was 14 miles away - it was a massive relief to us."
Once ensconced in his new school, Ryan began to flourish. Although he had ceased to communicate at 18 months, within a year at the school, he had begun to connect again with his family and the world around him.
"Almost as soon as Ryan joined Saplings, he began to improve," says Niall. "Autism is a very complex condition with associated challenging behaviours and these were all addressed at the school.
"Although he also has a learning impairment, in 2007, Ryan started to say some words again. Hearing the words 'Daddy', 'Mammy' and 'Nana' after six-and-a-half years was the greatest cause for celebration ever for us. Tears of joy and a great immense sense of happiness and relief overwhelmed us and the staff at Saplings School as we had finally made a small but very worthwhile breakthrough into Ryan's world.
"His vocabulary is still improving, although we often have to drag it out of him. But he also uses PECS (Picture Exchange Communication System), which is very beneficial as he doesn't have to actually speak to communicate with us. He can also spell, write his name, work on his iPad and is constantly working on numerical skills.
"He has also made great strides in other areas and is well able to look after himself at home - he strips his bed every morning, goes to the bathroom for a wash before getting dressed and comes downstairs to put his waffles in the toaster - all of these are huge achievements and we are very proud of him."
Niall says without the help of Irish Autism Action, these developmental achievements would not have happened.
"I don't know where we would be without the help of IAA," he says. "They provide so much support to us and so many other families. The charity doesn't receive any help from the Government and yet manages to be there offering advice on where to go, what to do and how to cope with autism.
"No one really knows what the reality is like for us and all the other families who are looking after a child with autism - it is non-stop.
"My son is now taller than me but has the mental age of a two-year-old. He has to be watched 24/7 as he has no sense of danger and can't tell right from wrong.
"So I would urge people to get involved in the fun run on April 3 or do what they can to help raise awareness."
About Irish Autism Action
• Formed in 2001, IAA aims to bring positive change into the lives of the one in 100 people affected by autism
• The charity does not receive any State funding so is dependent upon the generosity of the general public and corporate organisations
• The fourth annual 5k fun walk/run and 10k race with Midlands 103 presenter Will Faulkner will take place in Lough Boora Discovery Park Sunday April 3 at 11am, which is the first Sunday of April and Autism Awareness month. To take part see myrunresults.com
* See autismireland.ie
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