The first month after receiving a diagnosis of AUTISM passed in a blur of raw tears, increasing anger and endless questions. To the outside world it was business as usual, however for us it was a life-changing moment that would go on to dominate the next decade of our lives. How could this be happening? What are we dealing with? Will Mitchell ever be able to live a ‘normal life’? Will we? What the hell IS autism anyway? Did I cause this? Where did autism come from – the mother or the father? Is there a cure? This wasn’t what having a family was supposed to be like!
We thought that after an official diagnosis that we would be swamped with people offering to help us; professionals and support workers and teachers and guides. Yes? Oh no. Nothing. Nothing at all for days, weeks…months. In fact, it took us 8 LONG MONTHS before we had our referral to the child development unit answered. 8 months with no one to talk to and to put us on the right path. No one to help ease the pain and the heartache. No one to suggest strategies to ease the daily struggles. No one to help Anthony and I make sense of this madness. No one to take away the pain and the anger and the feeling of being totally shell-shocked.
I spent every night of that first month on the computer, looking for answers and clues to guide us forward. There were literally thousands of web pages that mentioned autism but for as many positive and uplifting sites there were an equal number of negative and despairing pages that took away all feelings of hope; and an unsettling number of snake oil salesman willing to sell a cure. I will always remember reading on an American site about a ridiculously expensive mud product that supposedly would take out all the poisons in a person’s body and cure them of all autism symptoms. It was an awful hit-and-miss way to learn about autism and left us more unsure about what we were dealing with.
The daily nightmare of feeding, bathing, playing, dressing, talking and sleeping for Mitchell continued to grow worse; and by the time he turned three he had no ability to talk at all. I cannot describe in words the absolute sadness I felt at not being able to hear my child’s voice on his 3rd birthday. It tore my heart out to watch him disappear under a cloud of autism. Our days at home were now filled with screaming and kicking and refusal and anxiety over everything; and as Mitchell’s mother I was miserable and stressed too. Scarier still, I was now only 6 weeks away from having our second child – another boy. How would we manage? Would he be autistic too?