When my son Edward was first diagnosed as having Asperger’s syndrome, it didn’t come as a surprise to me. I had suspected he was on the spectrum on and off for quite a number of years. When we got home from the meeting with the psychologist, we contacted both sets of our parents and let them know. Then we had to work out who else to tell and in which order. Edward was 8 years old at the time, and it seemed only appropriate that seeing as he was old enough to understand, he should know about his diagnosis before anyone else. So we sat him down and told him.
His dad Nick and I both agreed that school staff needed to know. After that it became more tricky as we wanted to tell our friends but were aware that if we did so, some of them would inevitably mention it to their own children, and we wanted Edward to be settled with his diagnosis before he had other children asking him about it. Nick also needed a bit more time to get his head around it first. In the end, once we’d had a bit more time to digest the information as a family, we did start to tell our friends. One family must have talked about it in front of their own children, because one day, our daughter Leila came home from school reporting that one of our friend’s kids had asked, “Has Edward got autism?” We were just glad that we had sat our own kids down and explained autism to them first, because I wouldn’t have wanted any of my kids hearing about Edward’s autism as if it was something scary and frightening. Edward didn’t want his primary school class to be told about his diagnosis, although this was something offered to him by support staff.
Towards the end of primary school, Edward was open to letting family friends know about his diagnosis. We found a useful book for us called “Can I tell you about Asperger Syndrome?” by Jude Welton, a short read that can be read by children and time-pressed adults alike. Quite a few family friends read the book, and I think it gave them more understanding and patience towards Edward.
Once Edward reached high school, it seemed to me like a real shift had occurred in terms of how he viewed his autism diagnosis. He wrote this when he was 13 years old:
“I have a condition called Autism. It affects my behaviour, and makes me less social but more focused. Most people see autism as problem but I see it as a feature of personality. If there was a cure I would not take it…. because I would die and be replaced by another person inhabiting my body. It would not be me, but a less interesting version of me without my best and worst features.”
If you are telling people about your child’s autism, I think it is important to talk about their strengths as well as challenges. I recommend letting people know what things help them stay calm, what things they enjoy and what motivates them. Taking this approach can be a more positive way of explaining who your child is and what they might need.
I want Edward to know he has autism. I want other people to know and understand what this means, and I don’t want my son to feel like he has to hide. Our kids will become adults sooner than we can imagine, and a world where autism is less stigmatized will be a better place for them to flourish.
Edward wouldn’t be the interesting character we know and love if he wasn’t autistic. It seems to me like he has buckets more self-awareness, reflection and perseverance than I had at his age, and I believe the challenges he has faced might have helped with this. I hope this will stand him in good stead for the coming years.
Follow this journey on A Blog About Raising My Autistic Son.
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