24/08/2016 13:16 BST | Updated 19/08/2017 06:12 BST

The Silent Truth Of Autism


Is silence really golden?

No. I long to have a conversation with my son.

When you have children you don't for one second think they won't talk. Even when Stanley was two and showing strong signs of ASD I never in a million years thought he wouldn't speak.

This is what I find the hardest about Stanley's disability. I can do routine. I can do firm boundaries. I can do random obsessions. I can do limited sleep. I can do personal care. But it breaks my heart that I never know what he is truly thinking or feeling.

I'll always remember this one time in the supermarket. A mother had her toddler in the trolley and he was extremely verbal and she told him "I wish you would be quiet for one minute" and I remember thinking "I wish my son would talk for one minute".

Husband is at the football tonight and my youngest Buddy is poorly and went to bed earlier than usual. So it's just me and Stanners. I've had plenty of 'me time'. Probably too much. Quiet time. Time to think. Something I've learnt and never thought I would ever say:

Autism can be really quiet sometimes.

Stanley is noisy don't get me wrong. But he's never spoken. He once said a word that sounded like "mama" but that's it. No words.

Tonight he's doing his usual babbling, squealing and banging of objects against the computer desk. You certainly know when Stanley is in the house! But it's strange to me that it's been 4 hours and I've not actually spoken with anyone. Of course I talk to Stanley but it's completely one-sided.

If I'm being perfectly honest I probably don't talk to him as much as I should and definitely not as much as one would with a typical 9-year-old.

I will ask him what he wants to eat, if he needs a toilet, how he is and give him a blow by blow of what our agenda for the day is. Backed up with a timeline and other visual aids.

Our voice.

He will occasionally hand me a sentence strip from his PECS (picture exchange communication system) book - mostly asking for food "I want... Crisps" followed by a sign for "please".

His voice.

Ask him "what would you like to do today?" Silence.

"What's wrong?" He can't tell me.

Throughout the day there will be additional requests of breakdowns of the day's plan. But no 'chitter chatter', his gestures and body language can sometimes hard to read and Stanley doesn't really understand the context of feelings or emotions.

To put it into context for us: a number of years ago I (stupidly) left the back gate unlocked and Stanley wandered off into our back passage. I noticed immediately and it was no major issue but it dawned on me that if Stanley was to wander off and get lost he couldn't tell anyone what his name is or where he lives. He can't communicate at all. And not everyone knows even the basic of Makaton signs, so that both scares me and makes me really sad.

These feelings also get reignited by my youngest. He's 2 and learning lots of new words and talks non stop. He said "lufff ewe mummy" the other day. That moment was without a doubt one of the most happiest and saddest moments of my life. Hearing those words, but longing to hear them from Stanley.

I know I'm lucky that I can communicate in some ways with Stanley - even if it is limited and one-sided. But without making this blog a total pitty party... I just want to be able to have a conversation with my kid.

It's as simple as that.