In Conversation with PAPA
WELCOME to this new feature in Kerrs Corner. ‘In Conversation With …’ will look at local people who work for the good of their community. They may be from a charity, community, youth, sports, school or church group. I’m also interested in featuring local historians, bands, colourful characters or those who just have good tales to tell. Another group of people I’m interested in looking at are small businessmen and women.
As a rule I want to feature folks from areas where Wizard Ads circulates – North Belfast, Newtownabbey and East Antrim. However, I am willing to make exceptions! Therefore, if there’s anyone out there you think I should talk to, please let me know. Simply e-mail me at: email@example.com I look forward to hearing from you!
I WAS wondering how I could kick this new series off when I came across an article in the Irish Independent. It concerned Padraig and Mary O'Hara from Kells in Co. Meath. They have five children - four of whom, Oisin, 13; Blaine, nine; Seadna, five and four-year-old Cionnaola have Autism.
Their parents had complained to the media about their constant battles with the Irish Health Support Executive to get it to provide basic support and educational provisions for their children. To my amazement - I didn’t know that any state had such draconian powers - the family had their children taken off them in an act of downright totalitarian vindictiveness by the Irish Social Services and put into state care!
Happily, after an anxious week, Padraig and Mary O'Hara, backed by the independent MEP Mary Sinnott and the Irish Society for Autism, had their children returned to them by court order. God only knows, though, what the lasting effect of this episode will be on these poor children. Anybody who knows anything about the care of autistic children is aware that routine is terribly important. As one commentator has put it, "carting them off in paddywagons is about the most traumatic thing you could inflict on them, bar actual physical assault".
This got me thinking about the situation in our wee country. After all, we hear a lot about Autism - and its possible links with the MMR vaccine – but how many us actually know what Autism is? How does it affect children and their families - and what facilities are available out there to help them?
To find some answers I thought I’d talk to Margaret Field. Margaret is the East Antrim branch chairperson for PAPA – Parents and Professionals and Autism. It is the Northern Ireland Autism charity.
Margaret explained that Autism is “a disability which disrupts the development of social and communication skills”. She told me that approximately 50% of people with an Autistic Spectrum Disorder (ASD) have accompanying learning difficulties, but whatever their level of ability, they share a common difficulty in making sense of the world in the way others do.
There are many characteristics of Autism. The degree to which people are affected varies, but there are key characteristics. These include: difficulty with social relationships (a seeming indifference to others), communication problems (most people with an Autistic Spectrum Disorder have difficulty in acquiring, using and understanding speech) and a restricted range of behaviours, activities and interests (repetitive body movements, preference for routine, preoccupation with certain objects or activities and dislike of change are aspects of this).
I then asked Margaret about PAPA itself. She told me “PAPA was formed in 1989 by a group of concerned parents and professionals. PAPA is guided by a council forum and board with representatives from the local branches. It is a registered charity in Northern Ireland specifically aimed at promoting the needs of people with ASD and their carers”. A central office was established in 1992 and its current HQ is based in the grounds of Knockbracken Healthcare Park – the old Purdysburn Hospital – off the Saintfield Road in South Belfast.
She then told me about the work of East Antrim PAPA, just one of the expanding network of branches throughout the country. “The East Antrim branch is based in Ballyclare and covers a wide area. Members come from as far away as Antrim, Broughshane and Ballymena. We are primarily a support group for parents and carers, but we also organise outings and family days as well as bowling and football for the older children and young people with ASD. Families can feel very isolated when a child receives a diagnosis of autism, and it helps to be able to talk to others who have been in a similar situation”.
I asked Margaret about the debate surrounding the MMR vaccine and a reported link with autism. Recent research has said that there is no link and that parents should feel reassured and have their children immunised. She told me “I believe that most parents would want to protect their children from disease, but I think it should be their decision how they do this. Many of our members have had single jabs for their children and I can understand why”.
Moving on from the MMR debate, I was interested to know what happens when someone is diagnosed as Autistic. What schools and facilities are available in East Antrim for children and their families?
“There are several special needs schools in the East Antrim area. However, they can be extremely difficult to get into. The statementing process is long and complicated and many parents have to fight for an appropriate place for their child. There is also a lack of respite facilities and places are much sought after”. For many parents this is the only chance of a break from caring for their child, and it is also important to remember the effect it can have on siblings, who also need attention and time away from their brother or sister.
She also informed me that once a young person leaves school at 16 or 19 there may not be a suitable place for them in an adult centre or work placement and they may have to remain at home. I was also amazed to learn that respite (for this older age group) is virtually non-existent. Therefore “parents may have to face the prospect of caring for their young adult 24/7, at a time when their peers are fleeing the nest and tasting their independence for the first time”.
The MMR-Autism debate is still raging. The government is also forcing through savage cuts in education budgets. This will affect East Antrim as well as other areas of the country. Therefore, I think this is a subject that I’ll return to in a future issue of Kerrs Corner. In the meantime, PAPA can be contacted centrally by phone at 9040 1729 or you can visit their web-site at www.autismni.org
Folks in the East Antrim area who have concerns about their children – or want to help with, donate to, or learn more about the work of PAPA - can contact Margaret Field. Phone her on: 028 9050 1135.