‘Better and more education for everyone about autism and Asperger’s is a good place to start’

Mar 24 2008 Western Mail

Autism and Asperger syndrome have been recognised neurological conditions for more than 60 years. But how does it feel to be a parent of an autistic child, or to live with Asperger syndrome? Health Wales asked two families for their unique perspectives

Case study one

THE Reverend Dr John Gillibrand is an Anglican vicar and the priest in charge of Llangeler with Penboyr in the Diocese of St David’s.

He said, “Gill and I were married in 1992, and went to live in Blaenau Ffestiniog in North Wales. Adam was born in June 1993, and our second son Peter in 1996. We moved to Menai Bridge on Anglesey in 1997 and Adam was diagnosed as being on the autistic spectrum in October of that year.

“In 2002 we moved to Bridgend, and in the following year Adam went into full-time residential care. In Bridgend he also received a diagnosis of attention deficit hyperactivity disorder (ADHD). He is currently at Rowden House school in Herefordshire.

“Adam’s autism has affected us as a family in different ways during his lifetime. In the first place there was a struggle simply to get access to the diagnosis, and then to come to terms with it. Accepting Adam as he is – which we have always done – does not take away the impact of the diagnosis. Like many families, we were relieved to get a definite diagnosis, but then a steep learning curve had to be faced as we tried to find out more about autism. I was not prepared for the difficulty of getting appropriate public services to support Adam from education, health and social services.

“I had always assumed that in the cases of the greatest need help would be more or less automatically forthcoming.

“On top of coming to terms with the diagnosis, and the pressures of day-to-day care, this is an additional burden on many families. We experienced, as a family, a serious shortage of respite care, and after many years of looking after Adam were pushed to the limit of our emotional and physical resources. I was particularly concerned about the effect that Adam’s care might have on his younger brother Peter, particularly as Peter grew older and became more aware of our family situation. Now that Adam is in full-time residential care we visit him on a regular basis, though the school is just under three hours from our home. The school is very good at keeping us informed, and we have a letter each week. We look forward to seeing Adam and spending time with him as a family.

“Caring for any child changes your life so much, but caring for Adam has transformed our lives beyond recognition.”

Case study two

MARK ANNIS is an artist who lives in Penarth. He has Asperger syndrome and struggles to understand how today’s society could ever be described as enlightened.

No matter how many times we tout the concepts of tolerance and integration as part of our social values, Mark sees little evidence of either in his daily life.

It is not simply that people think he’s a bit “odd”, or that he has never had a girlfriend, or that his last employers thought he didn’t fit in, and let him go despite his impeccable university qualifications.

Just being among people exposes 46-year-old Mark to open hostility and thoughtless taunts – even from younger generations who have access to far more information and awareness of autism than their parents or grandparents ever had.

“I believe there’s been a backward shift,” Mark said. “The world today feels like chaos, driven by markets and increasingly cut-throat business environments.

“Autism by its very nature requires stability and predictability and life today doesn’t feel safe. Society is a mess.”

Mark also feels as though he is behind a glass wall, an invisible force stopping him from communicating as he attempts to spot the “hidden rules” that seem to guide everyone else.

“Everyone makes gaffes, but ours are perceived to be 10 times worse,” he said. “It makes life very challenging.”

But he describes his glass wall as something beautiful and mysterious, and has found another way to express himself through his love of art. Now a successful professional artist, Mark lets his paintings speak for him.

And if he could wave a magic wand and change how we view autism?

“Better and more education for everyone about autism and Asperger syndrome has to be a good place to start,” he said.