Last week I heard a 12 year old boy called Richard give a talk about his own experience of having Aspergers. I was at a two-day conference organised by Autism South Africa, where there was the usual line-up of speakers with long lists of letters behind their names. Yet—amongst all these highly educated and well-spoken adults—this courageous young boy’s talk stands out for me.
I believe this was because his talk highlighted, as never before, the dichotomy of living with an Autism Spectrum Disorder (ASD). This was the most evident at the end of his speech, when he took several questions from the floor. The answers to two specific questions stand out for me. The first question was: “What would you tell your classmates about your condition?” and the second was: “If there was a cure for Aspergers, would you take it?”
Richard’s answers reflect a great deal of the struggles, and yet also the triumphs of living with Aspergers.
In answer to the first question he said: “I’d tell them it’s not catchy.” And to the second question: “No, I wouldn’t take it. Because I think Aspergers is a difference, not a disorder.”
The same theme of struggle and triumph comes through in talking to fellow parents. One mom shared her sadness with the fact that her 16-year-old son never wants to go out with family or friends. All of them will go to a restaurant, but he will insist on staying home alone and eating a pizza. However, she is quick to point out how the people who have spent time and effort getting to know him, always really enjoy his company. He is direct and funny and refreshingly innocent.
Even my own emotions on leaving the conference, reflect this contrast. Hearing of the struggles young Aspergers adults have with choosing a career path, or entering the less structured tertiary education systems or workplace, leaves me with a sense that we still have many bumpy patches to navigate on our Aspergers parenting journey. Yet, I also have a renewed appreciation for just how unique and wonderful my daughter is, and what a privilege it is to be her parent (read a little bit more about our amazing daughter).
My desire in writing this blog is to highlight both these extremes—the difficulties and the delights. Each child on the spectrum is so very unique and every parent will have their own set of struggles and joys, but it is my hope that we will be able to share these, and offer each other support.
What is your greatest struggle and joy as a parent of a child on the Autism Spectrum?