A DUNGANNON mother, whose two and a half year-old son suffers from autism, has told of the heartbreaking daily battle she faces to be able to do even the simplest of things as a family.
Ciara Currie has also revealed her deep sense of frustration and isolation at what she says is an absence of help for families in similar situations.
On a personal level - and in a bid to raise much needed money to support other families with autist
ic children - the mother-of-three has embarked on a gruelling physical challenge which will take her through some of the world's most arduous territory.
But for the busy young mum, it is the day-to-day struggles which are toughest for her and her family.
"Ronan is so withdrawn, he spends much of his time in his bedroom", explained Ciara. "He doesn't play with his two sisters and his speech is still mostly babble at this stage. He has only recently started to walk and if he wants something he just cries.
"Even simple things, like taking him to the hairdressers to get his hair cut, are impossible for us. My husband Gary had to shave Ronan's hair himself recently because he can't bear to have anyone touch his head. He interprets even the slightest touch to his head as real pain. He has no sense of pain or danger. One day I found him crawling through nettles in the garden, covered in sratches, but it didn't bother him. Yet often the slightest of touches can send him completely crazy."
As a scout leader in Dungannon, Ciara has met one other local woman dealing with autism, but says she hopes that, through a charity trek along the Great Wall of China in aid of Autism NI, she will be able to build up a network of families who have to cope with the condition.
Ciara explained that, during the early stages of Ronan's life, she was aware that he was not progressing as well as other children of his age.
"Even when he was a wee baby he never used to interact with me, and he was slow at crawling. It was around this time last year that I said to Gary, "Something's not right". We went to our GP and were referred to the Paediatric Clinic in Dungannon. Ronan was tested for muscle disease but his development was not addressed."
After seeing a second doctor, who acknowledged that there were problems with Ronan's development, the couple saw a private consultant.
"The consultant did a few simple tests and told us that Ronan displays all the tendencies of autism. While it wasn't exactly what we wanted to hear, at least Gary and I knew then what we were dealing with. But it is so hard to get any help. We still don't even know that much about autism, we are learning every day, so that is why I decided to do something about it and take on the charity trek with Autism NI in October.
"We are just so frustrated with Ronan's lack of progress. He sees a speech therapist once every six weeks but we haven't seen the occupational therapist since before Christmas. Ronan needs more than just speech therapy."
According to the National Autistic Society (NAS), autistic spectrum disorders (ASDs) can normally be diagnosed at around the age of two years.
In many instances professional workers may spot the tell-tale signs of autism via the normal childhood health checks and this will eventually result in them being formally diagnosed.
The NAS warns, however, that although the characteristics of autism are generally evident in the first few years of life, the condition can go undetected for many years especially in those who are at the more able end of the spectrum where the signs are more subtle.
To take part on the trek in China, Ciara has organised a series of charity events over the next few weeks, including a pub quiz at Bishop's, Moy, on May 29 from 9pm; and a BBQ and music night at McGrath's Bar, Dungannon, from 9pm on June 26.
She is hoping local people will support her efforts to exceed her sponsorship target of £2,500 and, in so doing, help families of autism sufferers. Donations can be made online at www.justgiving.com/ciaracurrie
Mid-Ulster MLA, Michelle O'Neill, Vice-Chair of the Assembly's all-party working group on autism, said she recognised the frustration felt by so many families in situations like Ciara's.
Ms O'Neill said parents regularly faced a "fight" with education boards and health facilities to obtain adequate services for their children. The Sinn Fein representative said a cross-departmental approach to helping the lives of autism sufferers was essential.
"You cannot look at autism from simply a health or education perspective", said Ms O'Neill.
"You need to take a holistic view in order to improve services because autism is something which affects you throughout your life, so, for instance, the Department of Social Development need to come on board for housing later in life.
"The condition affects whole families, certainly. I know of people who can't go to leisure centres because their child doesn't like crowds. Autism is a unique social and communcation disability and there is so much work to be done."
Ms O'Neill was also critical of the way in which parents of children with autism were often having to plead for the proper educational and health facilities for their children.
"There is an equality issue with autism", continued the MLA, "because families are not asking for privileges. They are asking for their rights to be protected. From when a child turns three, parents can ask for a Statement of Special Educational Needs. Early intervention is key and if children are missed up to three years old, they can potentially miss the help they need."
