Asperger syndrome can destroy lives, but one family has survived by finding the right kind of care for their son
THE FUTURE has never looked so bright for Shane O’Neill. With his Leaving Certificate behind him, he is reasonably confident that he has enough points to secure a college place in computer engineering next September – although he would be happy with a software development course.
Meanwhile, the 20 year old is working part-time, has a good circle of friends and a long-term girlfriend, and will shortly move into a new home – a log cabin in a peaceful, woodland setting outside Portlaoise.
His contentment with life is something his parents, Cathal and Agnes, could never have envisaged when he had to be removed from their Clondalkin home in Dublin at the age of 15. Violent and paranoid, Shane had to be admitted to the adult psychiatric setting of St Patrick’s Hospital and months later sent to a special residential school in England because there was no suitable place for him in Ireland.
At the age of eight, Shane had been diagnosed with Asperger syndrome – a development disorder at the high functioning end of the autistic spectrum. People with the condition have average or above average intelligence but have significant problems with communication, socialisation and flexible thinking.
Shane’s major difficulties only started when he moved to secondary school. “There had always been problems, but we got through them,” says Agnes.
It had been easier in primary school, where he received very good support and his teachers were tuned into the need to help allay his anxieties.
Asperger syndrome is a social disability and affected children can become very stressed at not being able to interact with their peers. Their lack of social skills marks them out as a target for bullying and intimidation.
This is what happened to Shane when he moved to a large secondary school. “We didn’t get the support for him at the beginning,” says Agnes, “and when we did, it was too late. He went downhill rapidly,” and had to be taken out of school in second year.
He had started to have secondary mental health problems which are common to people with Asperger syndrome in the absence of appropriate support: depression and anxiety disorders, which, in Shane’s case, led to psychotic behaviour.
“He had gone violent. His whole personality changed,” says Agnes. “ Shane became paranoid, trusting nobody, either inside or outside the home. Fear was all around him.
“Something had to be done,” says Cathal. “We could not have continued on.” In hindsight they wonder how on earth they coped as long as they did.
As terrible as it was to see their son taken into St Patrick’s, there was relief too. It had been a traumatic time for all of them, including their younger child, Sarah, who is now 14.
She became fearful of the big brother she used to play with and would hide behind the sofa when she heard him coming down the stairs. “When is the nice Shane going to come home?” she asked her parents.
One consolation for the O’Neills was that Shane was reasonably happy in St Patrick’s, where he was heavily sedated. “He felt safe and he was under surveillance all the time,” says Cathal.
“I wanted to get out of my parents’ house,” agrees Shane, in a separate interview. “Things were not easy for me and I wasn’t making things easy for others.”
Shane’s time in St Patrick’s, followed by six months at Cruckton Hall School in Shrewsbury in 2005, gave them all much-needed breathing space.
“We used to go over and see him once a month and every month we saw him coming on a bit better; he talked a bit more,” says Cathal.
“After a few months he was grand and he was looking forward to us coming over to see him.” They were very happy with the school, the only problem being it was too far away from home.
It was then the O’Neills heard of a centre for people with Asperger syndrome that had just opened in Naas, Co Kildare. Run by a company called Nua Healthcare Services, it aims to provide tailored care, explains its managing director Edward Dunne.
A former social care worker specialising in crisis intervention in the disability services, Dunne had become frustrated at the lack of appropriate care here for people with Asperger syndrome. He and Nua’s clinical director, Ciaran Roche, believed that a fresh approach was needed.
Instead of trying to force square pegs into round holes, they had a vision of a person-centred service. “We wanted to create something very different,” says Dunne.
The O’Neills liked what they saw in the Nua centre but they were apprehensive about putting Shane there as it had only started, although the HSE and Department of Education were recommending the place to them.
“You’re actually giving a child away,” Agnes points out. “The fear of that: are you doing the right thing? Looking back on it, if we didn’t do it . . .”
“He would be in the rubber room,” interjects Cathal.
Both they and Shane credit Nua with turning his life around, by providing the kind of care he needed in a spacious, peaceful setting. He was reintegrated into the Irish education system, firstly with private schooling at the centre and then at St Patrick’s Community School in Naas (since renamed Piper’s Hill College).
“When he first went in, he was hugging the wall,” says Agnes. “By the time he finished at that school, he was chatting with everybody.” He was even able to give a talk to parents there about how he copes with Asperger syndrome.
This year he has applied to the Institute of Technology in Carlow through the CAO and Cathal is confident that his son will get a place “under his own steam”, as he has sufficient points. He has also done a post-Leaving course in business and IT.
Meanwhile, in the past six months he has moved into semi-independent living at a Nua house outside Portlaoise.
Located at the end of a snowdrop-lined driveway off the Tullamore Road, Taliesin is an old stone farmhouse which was extensively renovated and eye-catchingly extended by its previous owner, architect Michael Rice, who specialises in holistic house plans.
Sitting on six acres, the complex provides the space and serenity which Shane and his fellow four residents need. They have the support of care staff, opportunities to socialise but the freedom to be on their own too.
People with Asperger syndrome tend to have an intense interest in one thing and original thinkers such as Isaac Newton, Albert Einstein and WB Yeats are believed by some people to have been affected by the condition. Nua caters for the special interests of its clients and in Shane’s case it is computer gaming, which was once a near addiction.
“I would be playing it all day, and if somebody tried to interrupt me I’d snap,” he says. “I wouldn’t socialise with anyone.” But in Nua, “I gradually learned to spread out my time” and has put those days of obsessive gaming behind him – “for the most part”, he adds wryly.
We sit and talk at the table in the back of the kitchen, which has a panoramic view of the plot of land where six individual log cabins will be constructed by the summer. Shane will be the first to move into one.
“I am further ahead of the other lads,” he explains.
He is not transported by staff anymore but makes his own way by bike and bus to his first paid job, as a part-time caretaker at Sensational Kids, an occupational therapy centre and shop for children with special needs, in Kildare town.
When he was in full care in Naas, he explains, if he didn’t want to go to school, staff would be trying to persuade him to go.
“Now if I don’t want to go to work, they will be like ‘that’s your choice’ kind of thing. I think that’s one of the things that has helped me the most: letting me make my own decisions and letting me find out the consequences. I have got to the point where I can learn from those consequences.”
He says it is only since he was 17 or 18 that he has learnt social skills. “Once you have mastered a few of these skills, the rest fall into place. I have to make a conscious effort, whereas other people may be able to do it a little bit easier.”
Looking back, what could his peers have done to help him? “They could have been a little more understanding instead of calling me a ‘freak’,” he suggests.
If people with Asperger are slagged or insulted, it damages their self-esteem, he points out. They either become introverted, thinking everything is their fault, or they become angry and blame everybody else.
“Me, I was a bit introverted. I blamed myself for not being able to make friends,” he adds.
Nua Healthcare is opening a new unit in Portarlington next month, solely for adolescents aged 12-18 with Asperger syndrome, which will be the first of its kind in Ireland.
“It makes economic sense to intervene early and resolve their problems to prevent long-term psychiatric intervention,” says Dunne.
Nua has developed rapidly since its inception in 2005 and now employs 100 full-time staff in two separate services: one for those with learning disabilities and the other for those with Asperger syndrome.
Agnes and Cathal believe it is only a matter of time before Shane will be able to move out of care completely. They see him about twice a week and the family bonds have been restored.
The nice Shane is back.
