Some days stay in your memory for a long time: the day you gave birth, your wedding day perhaps, or even the day you graduated from high school or university. Unfortunately for me, one of the days that is stuck in my mind is the day my precious son was diagnosed with autism. I am not alone in that, either.
I put it to the back of my head most days. I rarely read the report I was sent, as it always brings me to tears. Time passes. My child grows and develops, but still some days I look at him and I am right back there in that waiting room when he was at just three years old and waiting on his final assessment for a lifelong diagnosis. I knew before they said the words. I thought my heart and my mind were prepared. It turned out I was wrong.
I was utterly devastated to hear that my son had autism.
People tell me I should not have felt like that. I have been told that he would pick up on my feelings and feel rejected, that autism is just a different way of processing things, and that my son is still the wonderful boy he was before that day.
I still cried.
I cried for the child I thought I would have. I cried out of fear and worry. I cried at the thought my son would struggle more than I ever wanted him to. I cried that my instincts as a mother had been right all along. I cried not for my son… I cried for me.
Autism was something that would stay with my son all his life. That can be difficult to comprehend when your child is not even in school yet.
When he was diagnosed, he was only just walking. He had no language and little awareness of the world around him. He didn’t even know his own name. I had no idea if or when any of that would change. He was diagnosed and then we went home. Noone offered me hope.
It was a dark day.
I could take you to that building even now, despite four years and five months having passed since we were there. I still see the waiting room in my mind. I can smell the sterilised toys and the wiped-down plastic seats. I can hear the voice calling my son’s name. It was like time stood still that day.
As my beautiful boy sat in yet another waiting room last week, on yet another plastic chair, I had a momentary flashback to diagnosis day again. Except this time I didn’t cry at the memory–it was more of a shadow in the background.
It has truthfully taken me many years to get to this point. Some days I hate even being referred to as “an autism mum,” as that just makes me think back to that defining day when they mentioned autism for the first time.
My son has autism. I can say that now.
Today, I say that with pride and a smile. My son is still non-verbal, still not potty trained and still requires around-the-clock care. He has no idea what happened the day he was diagnosed, and probably never will. That day in 2012 never affected him in any way, but it defined me as a parent.
Whether you have fought for the day for a long time, or came away from the appointment in total shock, diagnosis day is huge.
I know I am not the only parent who has taken years to process my child’s diagnosis. I am not the only person to have flashbacks to the day they told me my son had a life-long condition with no cure.
So, what most helped me stop those flashbacks and memories from taking over? Hearing my brown-eyed boy’s laugh, watching him smile and realising that he may have autism, but autism in no way defines him.
We are doing OK. We are a team. I help him and he helps me, too. He is replacing the memory of that day with better memories every single day of his life. I hope I get flashbacks to his hugs for many years to come.
Latest posts by Miriam Gwynne (see all)
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