Life with Asperger’s syndrome may be hard, but a positive and accepting approach can work wonders
As a child, my son Kenneth was extremely difficult to manage. Even the most skilful and experienced teachers found him a challenge, and the Education Board in Northern Ireland had huge difficulties finding a successful school placement for him. Kenneth was diagnosed with Asperger’s syndrome (AS) at the age of nine, and as his 21st birthday approaches, this seems like a good time to step back and reflect.
The reality of living with AS can be very difficult. But the good news is this: although the problems of AS continue to be managed rather than cured, Kenneth has turned out to be a charming and self-contained young man, ultimately happy with who he is. This, for me, is absolutely fundamental to success, however you define it. It sets him up with the best chance of finding his unique purpose, meaning and direction in life as he goes forward into adulthood.
When you have a child with AS you are forced onto a steep learning curve in your efforts to understand and help him or her. You make a lot of mistakes and you learn a lot of lessons along the way. Looking back now, the most valuable lesson I have learned is that a positive, accepting attitude is vital, and I would suggest the following as key elements in fostering such an attitude:
- sensitivity about labelling
- focussing on giftedness
- a positive appreciation of typical AS traits
- acknowledging our own Asperger’s.
Sensitivity about labelling
When we tell someone he “has Asperger’s syndrome”, we are doing more than simply naming his diagnosis. All those things that qualify him for diagnosis are very much part of him. He can work out ways to modify his behaviour, but he cannot change who he is, even if he wanted to. So we need to tread carefully. The Asperger’s label answers important questions about a person’s identity and what it is that makes him different. Insofar as we are answering these questions in terms of disability, that is bound to have implications for self-esteem and self-image.
I told Kenneth he had AS very soon after I found out myself, but I chose my moment and my words carefully. He had been going through a very hard time, feeling that there were no other children in the world like him. I told him this was not true, because I had just heard about a man called Asperger who was so interested in children like him that he had done a study of them.
To be honest, my own feelings about AS were very mixed at the time, but for his sake I tried to come across positively. It was clear from the start that this was a good idea, because he really got hold of my faltering positivity and ran with it. Within a year he had written a book which has gone on to inspire and enlighten many children and adults.
Focussing on giftedness
Recent investigation suggests that many of the world’s most brilliant, creative and innovative people may fall under the Asperger’s umbrella, including Einstein, Lewis Carroll, Hans Christian Anderson, WB Yeats, Michelangelo, Mozart, Van Gogh & Andy Warhol. This kind of research leads to speculation that there may be some mysterious link between AS and giftedness, and it can be interesting and inspiring to explore this area.
Typical profiles of an “Aspie” and, say, a gifted academic seem, on the face of it, to have quite a lot in common. In childhood, both are likely to have difficult and unhappy school experiences due to social difficulties, boredom and poor motivation. And both have a great capacity for absorbing and retaining information when it is on a topic which is of special interest to them.
It is hard to know the extent of the overlap between the two conditions. Personally, I suspect that it is greater than we generally assume, for these reasons: firstly, because it can be hard to detect and measure high ability in Aspies, and secondly, because it can be hard to diagnose AS in gifted people, unless they come forward for assessment. And there are many reasons why they are unlikely to do so, especially if they are successful in their chosen field.
A positive appreciation of typical AS traits
AS is a wide-ranging condition and each person needs and deserves to be appreciated for his/her unique qualities and gifts. However, it can be helpful to encourage individuals with AS to consider the typical AS profile, determine which traits and attributes they can identify with, and look at each of them from a positive point of view. For example, typical AS strong mindedness and determination may be difficult to live with, but it can help people achieve great things and overcome great odds. Aspies may have a brain that works differently, but the world needs the Asperger’s brain.
In general, Aspies can be seen as honest, loyal and interesting people. My recent book, Appreciating Asperger Syndrome, includes an extensive list of AS traits and suggests ways in which each of them can be viewed positively.
Acknowledging our own Asperger’s
While I was working for the National Autistic Society, I often visited homes in which a child had been diagnosed, and it was common for one parent to confide in me that they believed the other parent had undiagnosed AS. It is generally agreed that AS runs in families, so I am sure they were often right. But usually, the parent believed to have AS refused to take the suggestion seriously. I can understand this stance, because I did not receive my own diagnosis until four years ago. Until then, I had always had difficulty finding my place in the world. I had made decisions which may have made my life seem “colourful” to other people, but many of those decisions have had painful and far-reaching consequences.
Since diagnosis, I have rediscovered an early love of music and become involved in a whole new world of creativity, recording and touring which has led to me meeting and marrying a singer-songwriter (Bap Kennedy). Recently, I have written and released an album of my own original songs and this feels at last like the life I was meant to lead, so I am much happier.
I have heard it said that everyone has at least a little bit of autism. If this is true, then maybe this is where the most interesting parts of our personality lie. If we fail to explore this, we could be missing a great opportunity to understand and appreciate the real nature of Asperger’s syndrome, and perhaps to discover the most interesting parts of ourselves.
Brenda Boyd is the author of several books on Asperger’s syndrome, including Parenting a Child with Asperger Syndrome: 200 Tips and Strategies and Appreciating Asperger Syndrome. She is also the mother of a young man with Asperger’s and is herself diagnosed with the condition:
Brenda’s son, Kenneth Hall, is the author of Asperger Syndrome, the Universe and Everything.
This article was first published in issue 48 (September/October 2010) of SEN Magazine.