Diary of Autism 2
By a proud Brisbane Mum
When my little 3 year old wouldn’t eat anything but crackers I took him to a pediatrician as you do. I watch proudly as he demonstrated his ability to solve complex floor puzzles and build symmetrical block creations. I laughed at the way he rubbed her feather pen across his hand as if it was the most exquisite feeling in the world. I was also thrilled when he introduced himself and proceeded to tell her all about dinosaurs, what they ate, where they came from.. This was a good day for him. I expected her to refer me to a dietitian.
She said to me.. I think he has Aspergers.
I cried.. actually to say that I cried isn’t quite the whole truth. I told her she must be wrong, that he was too smart, too perfect, too verbal… Jack spoke his first words at 6 months, he walked at 8.. So what if he spoke in the token American accent.. he watches a lot of Disney? So what if he runs around naked in winter while sucking on ice? So what if he broke his leg and we didn’t know for 3 weeks? He just isn’t sensitive like other kids. SO what if he can build crazy symmetrical towers from duplo that rival modern engineering. So what if he screams when people knock on our door and screams at them when they come inside? He is just shy.. Isnt he?
He is perfectly different, my perfect Jack.
After denial.. I cried.. I cried for him.. …what I imagined to be a bullied future, a lost future, an isolated future. I remember reading book after book, watching movies like Horse Boy imagining my boy being an outcast, me as a mum being outcast with him.
I demanded a second opinion.. and I remember rocking up to a clinic in Brisbane (after a long waiting list and armed with $600!!!!!!) and another little fellow was waiting with his mum and he wet himself, screamed obscenities and I thought- I don’t belong here…
But it turned out I did. Jack was confirmed.. High functioning with ASD. (ASD is the Autism Spectrum Disorder- I prefer condition, and I prefer no label at all.. It is such a rainbow of traits, traits that many non diagnosed people including you would possess. I was lucky/unlucky neither really, that Jack is high functioning.. in writing this I do so well aware that there are parents that deal with challenges beyond my worst days with Jack. This is simply my story. one story.
On a great day Jack is delicious.. loveable to the point of being movie like.. he will tell you ‘You make my heart shake Mummy’ or ‘You are my love heart mummy’
On a bad day he will tell me ‘If I had the chance I wouldn’t choose you mummy’
He builds a solid fanbase where ever he goes and at the same time a crowd of curious wonderers.. those that wonder—
- Why does she not cut his hair?
- Why does she let him only eat chips in a restaurant?
- Why are you giving a 4 year old a slurpie?
- Why is he screaming?
- Why is he so rude and wont say hello or look at anyone?
Because in his little perfectly different mind- our world is just plain odd and very overwhelming. He is wondering why people are looking at him, he doesn’t appreciate that is simply what people do when they talk they want to talk to him. He doesn’t really understand manners, and they are taught as a mechanical thing, rather than an automatic and also understood empathetic response. He also doesn’t understand that change for everyone else is easy, for him, it is important his world is governed by routine and safety. We go to the same restaurants, and when we trial new places, we placate him with ipads and iphones so if needs to.. he can zone out.. Don’t get me wrong, sometimes a place will click and all will go swimmingly from the beginning- (he loved captain snooze for the first 5 minutes).. but the risk is in the false sense of security that that can bring.. I never assume anything.
At age 5 Jack also wants to understand so badly- why kids are mean to him, why do people die, why do ants have families, why does his little brain make him do naughty things and why does it stop him doing things he wants to. Why when he tells a little friend that ‘I would really like you to be my friend’ – does that little friend look oddly at him..
Someone once told me that a child with ASD will ask if they can play while one without will simply involve themselves in play without mention.
His biggest accomplishments in his life
- He was born.
- He stood up for 5 minutes at his kindy concert and sang a group song (cuddled by his favourite kindy teacher)
- He stood up on assembly to receive a certificate
- He spoke in front of strangers at a science talk
- He had a haircut by an awesome hairdresser for kids
- He had a photo taken where he smiled
- He licked a bit of chicken nugget
- last night he ate a different type of rice cracker for the first time in a year or so- a bbq flavour he hadn’t had before
- He went to school- mainstream and he is doing just fine.
- He is happy 99% of the time
I realise now.. on this journey, that there are people who will get it, those that will try and those that will choose ignorance.. I treasure the people that try, and cherish those that get it, and bless those friends who will actually talk about it- because that is important too. I used to hide it, but I also know that proudly many CEO’s, great scientists and geniuses of our times have had asd. I also know that many perfectly ordinary and extraordinary asd kids have grown into happy adults.. and that is really all I wish for my dear little Jack..
Most importantly I know that my story is just one of many, and they will all be as different as a snowflake representing each perfectly different child with autism or autism related conditions.