The diagnosis

29 March 2016

Dear friend,

The battle over diagnosis, is a battle that I think many parents of children with additional needs have. I know that before diagnosis there were so many conflicting thoughts running through my head that I didn't know what to think. The signs were there and concerns would pop up but there was always an answer. 

Why isn't he speaking as much as other children his age?
He is bilingual it will take longer.

Why doesn't he respond when I call his name?
Maybe there's a hearing problem, let's check it out.

Why doesn't he want to cuddle with me?
I wasn't a cuddly baby according to my mum, he's just active.

Why doesn't he cling on when I carry him?
He doesn't like to be carried. 

Why must he always have a toy in his hand?
He just likes cars and trains like loads of boys.

Why must we watch the same program over and over?
Don't all young kids do that, I've heard other parents complaining too.

Why does he run away from me when we go out?
It's me he doesn't want to be with me.

Why isn't he interacting with the other kids?
At this age they all play alongside each other.

Why doesn't he play? He just lines things up.
OK this one worries me, I know that means autism.

Why does he keep spinning?
He just likes to move.

Why won't he eat different things?
I'm a bad cook I don't eat healthily it's my fault.

Why does he keep bumping into things and falling over?
He's clumsy like his uncle. 

Why doesn't he point at things?
Should he be?

Why doesn't he fall asleep?
Is he ill? Maybe he needs less sleep than other kids.

Why does he want all the labels out of his clothes?
He's sensitive, it's making his skin red, it's one of those prickly labels.

Why is he overreacting because we are not going to toddler group today?
He's just tired.

Why does he put his hands over his ears?
He doesn't like loud noises, he screams at the drill.

Why did he cry when the men took the broken washing machine?
That's kids for you!

Why does he want the same story every day?
He likes routine.

How does he know the name of every Thomas train?
He is gifted!

The answer was provided by myself, family members or friends. 

But at some point the answers started to feel like excuses and the doubt grew and grew until it consumed me with guilt. 

I felt like I wasn't providing what my child needed. He needed something more. 

Hubby and I agreed that we couldn't ignore it anymore, we knew there was something not right. I dared to breath the A word, to put it out there. Could he be autistic?

But I knew, deep down locked away in the furthest, darkest, less used part of my brain, I knew and the truth has a habit of lighting up those darkest reaches with even the tiniest most insignificant flame.
I wasn't prepared for the backlash from some.

He can't be autistic he gives eye contact, he's clever, he's loving. 

You don't want to label him too early was the response from others. This is something that I really wrestled with... At the time the response made me angry. I felt like it was an old fashioned reaction and wrapped up in shame. Like the days when autistic children were hidden away in institutions. We don't want to admit that someone in our family has Autism. Let's brush it under the carpet. And don't mention it to...

Perhaps, in hindsight I was wrong and their intention was different... 

In the early days of diagnosis it is easy to grasp onto the label so hard that you are in danger of losing sight of what really matters, what is really important, your child. Your world becomes filled with Autism.

As parents you spend so much time focusing on the problems, laying out the negative behaviours to psychologists, therapist, Drs, teachers that it becomes all you can see. 

The information you are given quite frankly scares you to death. The future, your future, their future has suddenly changed and is now filled with a type of uncertainty that you never knew. 

It can draw you in and fill you with anxiety. All you can see is that bloody badge. 

I didn't want people to look at my son and just see that badge. I didn't want it to limit his life!

But it is simple, without that badge you do not get the support!

For me there was a point when I changed...when I stopped focusing on the autism and looked at my child for who he is and the badge got smaller. It never goes away but it becomes less scary, less significant, less like the enemy...

My son will not be defined by his autism. he will be defined by his love, his passions, his sense of humour, his loyalty and warmth, his amazing memory and his intelligence...

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