My family's experience on the Autism spectrum
My sons and I were born on the autism spectrum. I have Asperger’s syndrome. My eldest son has Asperger’s too, but he also has ADHD (Inattentive type). My youngest son has high functioning autism. These are disabilities which can make life very difficult for us at times.
In my case, I'd always felt that I was different, but I didn't learn why until I was in my mid-thirties. My children, however, were diagnosed aged five and three. They've known all their lives. Autism affects us all quite differently, but we're similar in lots of ways too.
My wife isn't on the spectrum but, among her other roles, she's a mentor to all of us on all things “neurotypical” and she keeps us grounded. Together we support, educate and inspire each other.
My parents and I were completely unaware of my disability when I was growing up. Luckily, I am also partially deaf with about 25% hearing in my left ear and more or less none in my right. It seems strange to say that I’m lucky to have been deaf, but it was my deafness enabled me to receive additional help and support.
Being deaf meant that teachers would spend more time explaining things to me or would write them down. This meant that I didn’t have to struggle with tone and facial expressions quite so much. It also meant that I got speech therapy from a young age and that, as a result, 'robotic-sounding' Asperger’s speech issues didn’t become a problem.
It’s only recently that I’ve understood that being deaf also meant that some of the more severe sensory issues, that can occur for autistic individuals, weren’t an issue for me. I also had terrible sinus issues as a child, so smell was often not a problem for me either.
Needless to say, while I grew up oblivious to my condition, I never fully integrated into society and always felt “like an alien”, like I was on the outside of social gatherings, looking in.
When my first son was born, my wife and I struggled in our relationship. She would always tell me that there was “something wrong” with our little boy and I’d always dismiss her comments because he was exactly like I was.
He was growing up in the only way that I knew and the so-called “unusual” things that he did, like lining his toys up, were very familiar to me. Those early days were full of arguments and they weren’t happy days.
It was only after we’d been through a number of paediatric assessments and were reading up on Asperger’s that the “penny dropped”. I was different too.
As we researched Asperger’s syndrome, we began to understand my son better and I began to understand what was different about myself. At first, I was quite disappointed that so many of my quirks could be put down to a label rather than simply individuality. But, as I began to accept myself, I also discovered that I could improve myself. I joined forums, read books and started blogging about my experiences in order to find out how other people dealt with their differences.
Understanding Asperger’s helped me to realise what I needed to bring to the relationship with my neurotypical wife. Our relationship settled into a much better place and we became more supportive and consistent as a couple and as parents. Our children benefited from these changes too.
We never hid the facts from them but made it clear right from the start that they were on the autism spectrum and that they were a little different from many of the other children at school.
They were delighted to find friends who were on the spectrum too and, rather than rebelling against their diagnosis, they’ve embraced it with open arms. We concentrated on building via their strengths - particularly their special interests - and we tried to address their weaker areas with everything we could. This included speech and occupational therapy, individualized education plans (IEPs) and tutoring.
We used Scouting to provide a diverse array of social situations, which allowed my boys to build up their social skills. We also turned to karate classes to work on the problems of low muscle tone.
My wife and I spend a lot of time providing coaching, advice and real-life examples during our day-to-day activities and we use our holidays as opportunities to broaden our boys’ minds and get them working together to support each other in unfamiliar environments.
My boys are now aged 17 and 14. They’re mature individuals who are proud to be different, but they’ve never lost who they are. They also know how to blend in and work with others and how to show empathy in a way that neurotypicals can understand.
Lately, they’ve been talking about the kind of jobs they would like to have when they leave school. They have much better social skills than I did at their age and they’re almost ready for their next big steps in life. I feel that I’ve learned just as much about autism from them as they have from me.
Taking the time to really familiarise ourselves with our diagnosis has led to a greater understanding of how we can improve ourselves as individuals and as a family.
To read more of Gavin’s story, visit his blog Life with Aspergers.