Michael's son was diagnosed with autism in 1998. What the doctor told him made him panic.

On Friday the 13th of February just over twenty years ago, our family joined the Australian autism community with the diagnosis of our two-year-old son Connor with autism spectrum disorder. In the months leading up to the appointment with the paediatrician, we knew that something was wrong, but persistent family folklore of quirky characters and late bloomers was used to calm our nerves.

Connor’s diminishing language, self-stimulatory behaviour and fixation with routines however seemed to become more pronounced each week. We were uneasy entering the specialist’s rooms and Connor’s screaming and visible distress during the examination raised the emotional barometer of the consultation culminating in the announcement of the ‘A’ word.

My wife Helen and I were numb with fear, grief and uncertainty. As we were ushered out of his rooms to make way for his next patient the doctor gave us a pat on the back and suggested we focus on our other child Lachlan, then just six months old.

That was the wrap-around medical view of autism in Brisbane in the 90s; forget about the dodgy one and enjoy the good one! We staggered from the clinic back to the safe cocoon of the family car where we wept uncontrollably and then started the long drive home.

We never really returned home to the world we had left that morning prior to the doctor’s appointment. We returned to our new world of grief, chaos and panic.

In 1998 the internet was still an emerging technology, however with our clunky 28k dialup modem we downloaded what information we could find and purchased as many books as we could afford and started to work out what the hell to do next.

Speaking at the launch of DAD film last week here in Brisbane, Autism Awareness Australia’s CEO Nicole Rogerson spoke about the way that women instinctively lean in to each other for support in times of crisis. Nicole spoke of women’s intuitive capacity to find strength and inspiration through their shared stories of grief and adversity.

The moment we arrived home after Connor’s autism diagnosis, Helen was immediately holding her mother and sister in her arms. They hugged, cried, made endless cups of tea and spoke of fear, hope, action and conquest.

The first thing I did when we got home was to get the garden hose and clean leaves off the driveway. I got it really clean. While Helen reinvented herself as a powerhouse of reading, research and networking I got stuck into the yard. Family members came to realise that if the lawn was manicured I was in a bad place.

Following the commencement of our in-home ABA therapy program we were incredibly excited to see small and incremental advances in Connor’s language and skills. He was responding to the program and progress was there to see. But it was so f*cking slow! I wanted my miracle and I wanted it right f*cking now!

In retrospect, it was a journey of a thousand miles and we were simply taking one step at a time. But I needed to do something tangible, I needed to fix something, I wanted to make a difference in a way that the increasing number of women involved in Connor’s therapy program were.

Through the numerous support groups that Helen had joined she made friends with other mothers of autistic children. I hadn’t attended the first meetings, instead I chose to stay at home with the boys (with all the micro-parenting pressure that entailed) rather than risk the emotional trauma of talking about my feelings in the company of strangers. The absence of any male friends who I felt that I could talk to about my feelings of hopelessness and grief left me isolated, angry and anxious.

Helen told me of a husband who she had met at an autism support group meeting, then another… she urged me to go along and chat to these guys, she said I’d really enjoy it. I did. It changed my life.

Over the next few years we joined a tribe of other parents and I learned to speak of my fears, hopes and triumphs with other men like me. We were autism expats at the embassy barbeque talking about our experiences of the new country we found ourselves in.

Helen and I were now far away from the home country we used to know, the one called ‘Normal’. We lived with our new peers as an exotic ethnic group of autistic parents. We did things differently to everyone else; we used different language; we had different ideas of what success and failure actually was. We had shared secrets and knowledge that only our culture understood.

According to recent statistics there are approximately ninety children being diagnosed with autism each week in Australia. The autistic tribe is growing and that suggests that each week approximately ninety women are leaning in to each other for support, building networks and creating hope and plans out of grief and despair. It also means that ninety new blokes are out hosing the driveway this week wondering what the fuck to do next.

After twenty years of autism parenting my advice to the dads is:

1: Find some other autism dads and talk to them about the road they’ve travelled;
2: Get hands on with the therapy, join the tribe of therapeutic action women;
3: Buy a gurney to get the darker mould stains off, they’re magic.