I first noticed when he was around six months old, although I didn’t realise it at the time. Jumping at the tiniest sound, as someone had struck cymbals together right next to his head.
At ten months old, we used to giggle about him staring out the window, or up at the ceiling, ‘talking’ to someone who wasn’t there. We joked our new place must have ghosts, although none of us believed in them, and the house certainly wasn’t old enough to be haunted.
At 11 months, he spoke his first word, and more soon followed. But they weren’t complete words, just the beginning sounds, and there was no ‘mum’ or ‘dad’. By 18 months, he was losing his words. He seemed to gain one, and lose two.
I took him to the child health nurse. She told me he seemed like a bright happy little boy, not to worry about his speech, boys often took longer to start speaking. We had a new baby, another one with reflux, and who didn’t sleep. We were soon moving again, back to where he was born, away from family. His dad was away a lot. Lots of people told me not to worry, boys often speak later than girls.
We lived in a world of made up words: Noh Noh, and Moo Moo, and Bo Bo. I could understand him, but no one else could. We saw a speech therapist who told me his speech was delayed by about 12 months, but no advice on how to help him, nor a follow up appointment. A friend suggested the local, publicly funded paediatric developmental team. They took us in, they told me they would try to help my boy.
We went to group sessions, with a speech pathologist, physiotherapist, occupational therapist and a social worker. There was I, baby strapped to my chest, hoping she would sleep, and willing my boy to join in, to say hello, to acknowledge anyone but me.
The lack of parallel play became more apparent as his ‘friends’ raced past him developmentally. While they ran around the room playing together, he would sit clinging to me, or staring off into space, seemingly oblivious to the games going on around him.
Then the echolalia started. It was as frustrating as it was joyful. My boy was talking, but he wasn’t telling me what was going on in his head. I still hadn’t been called mum. There were the three hour tantrums, hands reaching up the wail, wails spewing forth from his body because I’d made him come inside, and hung his hat upon a hook on the wall.
There was the physical pushing me away when I tried to pick him up, but climbing up my body when he was scared.
There was leaving the room for 30 seconds to pee, hearing his sister who I’d left sitting on the rug, leaning against the lounge, crying out in pain. Finding her lying on the floor, obviously having been pushed over. Asking him “Why is Mahalia crying”? and being answered with “Why Yaya crying”? and his crying when I comforted her instead of him.
We saw a dietitian, started an illumination diet for intolerance. By then his diet was already severely limited, and there wasn’t much left that he would, or could eat. But boy still wouldn’t call me mum. The voice that had been whispering in the back of my head for so long became louder and louder.
We saw a paediatric psychiatrist not long before he turned three. I told her I thought my boy, my baby, might possibly have autism. Surely she would tell me I was wrong? Three months later, we saw her for a final time. She gave me her report, she told me why my boy didn’t call me mum. We saw a paediatric psychologist, a paediatrician, and they told us the same thing.
The voice in my head had been right all along.
I remember driving to pick up take away that night. Sobbing as I drove. My precious boy had been diagnosed as being on the autism spectrum.
We continued our group sessions, and we found a wonderful behavioural therapist who made a huge difference to our lives. And my boy started calling me mum. We moved again when he was four, and awe kept going to speech therapy until after he turned six. When moved suburbs and schools a final time that final year of speech therapy. It took a year, but he finally started to make friends.
My boy, my baby, whose future I worried about is nine now. His IQ has been tested as superior. He has a great group of friends. At his request, we haven’t told his friends about his diagnosis. His teachers know, and the parents of his friends. He knows autism isn’t something to be ashamed of, but he wants to be seen as ‘normal’. I want him to know he is perfect the way he is.
Most people don’t pick up on it any more. But if you look carefully, it’s right there. It’s the way the hood of his jumper always up, the hair twirling, the meltdowns when his routine has been changed without warning, the meltdowns over his sister’s singing, or if she sits to close, it’s the struggle to cut his hair, the limited clothing choices, the limited food choices, t’s the perfectionism, the reluctance to accept compliments or have conversations about feelings, the shying away from human contact unless it’s his doing.
I can’t hug my boy, I can’t kiss my boy, even when he is hurt and crying.
But now, my boy calls me mum.