Living with Asperger’s
I am the father of a child who has had Asperger syndrome diagnosed. This was a frightening diagnosis because as parents we had no idea what this was. Since that diagnosis, I have become passionate about learning about and getting others to understand what autism is — in particular, Asperger’s — and why those suffering from the disorder need even more support and understanding than those children who are in the ordinary mainstream.
They are not to be feared and, now that I know how to deal with this, it is not that complicated. But it does not come without its challenges for both the child affected and the parents.
As I read more and more about schools having challenges with children, I assess there being a reason for the challenges. The key is to find out what is causing the challenge. Since this became apparent as something that would affect my family and has consumed us, I have learnt so much about the subject and have experiences to share.
Many children do not have a formal diagnosis as to the cause of the challenges. So these children are incorrectly categorised as bad, difficult or challenging. I hope that my testimonial will be of benefit to parents that have children they find challenging.
What is this thing called Asperger’s?
I have recently read with much interest the stance taken by West Pembroke School teachers to work to rule as a consequence of them not getting the support they need with students who are on the autism spectrum. Autism takes many forms and different challenges emerge from each form.
My child had Asperger’s, a form of autism, diagnosed when he was about 5. He was a student at West Pembroke Primary School. Getting through the first year of school without this diagnosis was tumultuous on many fronts. I would be called by the school regularly two or three times a week with various challenges my son was creating for teachers at the school and my response was always to respond with discipline.
Knowing what I know now, this response is unforgivable. The principal of the school would later call me to tell me she had recently attended a teachers conference and this thing called Asperger’s was discussed. She immediately recognised these traits in my son and recommended we have him clinically assessed.
We did have our son clinically assessed. That assessment revealed he was definitely exposed to Asperger’s. We discussed this diagnosis with the principal at West Pembroke and she immediately recognised that he needed an in-school aid. The Department of Education quickly assigned an aid to our son by the name of Sophia Burch.
Ms Burch met my son every day when he arrived in school and stayed with him until the moment he departed. Ms Burch would ensure all of my son’s in-school needs were met and any challenges he faced were mitigated. She would go on to become a family friend, to the point that my son insisted she attend his birthday parties, and he was at a loss when she was not in his immediate vicinity.
Once Ms Burch was on scene, our primary-school experience changed dramatically and very much for the better. I am not sure where we would have ended up had she not been there. She was a true gift.
But what is this thing called Asperger’s, for as parents we still did not know that much about it. Bright lights and loud sounds visibly unnerved and alarmed my son. We were forced to find out everything we could so that we could manage and support our son, and we would find out these were a couple of symptoms — some of many that are found in Asperger’s.
The need to find out even more came crashing down one day when my son attended a function with me at work. On arrival at the function, I was greeted by my boss, who immediately approached me to shake hands and give greetings. My son was tucked in behind my leg at this time. On spotting my son, my boss instinctively crouched down to eye level with him, moved his head close to my son’s head and said hello. My son’s reaction was to punch him in the face and run to the door.
What had just happened? Was this bad behaviour?
I had to immediately do everything so I could understand this. I did my own research: I read books and I attended a conference on Asperger’s, where I heard from medical professionals and parent testimonials. The testimonials were identical to my own experiences.
Asperger’s is about living in fear; fear of everything. This fear is made worse in instances of social interaction and many other challenges in social settings.
In looking back on what happened between my boss and my son, my boss putting his face too close to my son’s face triggered immediate fear because he moved into his safe space. He responded to that fear; this had nothing to do with behaviour.
Other traits of Asperger’s, as per the literature, are restricted interests, distinctive strengths, remarkable focus and persistence, and attention to detail. This describes my son in exact detail.
From about the age of 5 through to 12, he was infatuated with dinosaurs. It was all he could think about and all he could talk about. He spent hours and hours researching and reading about dinosaurs. Hours and hours playing with his toy dinosaurs recreating scenes he had seen in books.
Then he introduced soldiers. The introduction of soldiers led to a fascination with wars, and he moved on to researching the details of every war ever — from Anglo-Saxon to world wars. This led to a fascination with maps and globes, and so he spends hours studying maps and the globe, and can tell you where any small country or island is.
As his focus moves from one thing to another, his focus does not deviate at all until he knows everything there is to know about what has his attention.
My son has demonstrated that, despite the challenges with Asperger’s, he is incredibly intelligent and articulate about everything he has learnt. While we have moved on from West Pembroke and through middle school and into high school without the benefit of an aid, we have made the most of it by trying continuously to educate the present teaching staff around our son, but have encountered constant challenges along the way.
There is much need to tailor the learning environment around my son so that he fits in, fear is reduced and his immediate response to challenge authority and directions are reduced. The fears my son experienced as a small child are now much bigger, much more severe and much more real. We have had to work continuously to find coping mechanisms just so that our son can get through a day in school life. Depression is a side effect of Asperger’s. Apart from everything that comes with Asperger’s, you then have to deal with depression.
The depression from what I have witnessed derives from living in this constant state of fear and the associated, high anxiety levels.
The child questions everything that comes from the already difficult social-interaction experiences:
“Do people like me?”
“Why do I think they do not like me?”
“How can I get them to like me?”
“What do they think of me?”
These are all questions constantly going through the mind during social interaction, and this leads to the elevated levels of anxiety and depression. Suicidal thoughts become more prevalent. The fear is so overwhelming that they think of eliminating this fear permanently. I have had to experience all of this and it is incredibly painful as a parent to watch your child suffer in this way.
I relay my experience with Asperger’s so that other parents who may not have had a diagnosis can recognise the signs. It is only once you know what you are dealing with that you can support your child in a healthy and helpful way with full understanding.
Our schoolteachers need support for these students. These students with various forms of autism are not to be discarded, and the challenges ignored. Among these students are many challenges, but there is also a lot of talent buried amid their difficulties and challenges.
Albert Einstein and Bill Gates, the Microsoft founder, are examples of talented people with an Asperger’s diagnosis. It is about embracing these difficulties and figuring out what makes them tick, as they all learn differently, think differently — and they are different.
Teachers have seen the result of working with students and getting the best out of them when they are aided. I admire West Pembroke Primary School teachers for their stance. In my experience, that is a school full of dedicated, talented and patient teachers, and I am disappointed that they are not getting the assistance they need with student-aid teachers as I did when my son attended.
Even more serious, and perhaps scarier, I would suggest children on the autism spectrum across all of its ranges are susceptible to being drawn into the gang culture — certainly they are susceptible to bullying. They are vulnerable people in so many different ways.
We need to invest heavily on the front end so that the long-term prognosis for all efforts to stamp out the gang culture is that much better. It’s a win-win for everyone if the investment is made at an early stage by parents and the education regime.
• Robert Cardwell, a chief inspector in the Bermuda Police Service, is a parent whose family are living with Asperger syndrome