My son has the type of autism that is not a hidden disability

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My son was running away from me in the supermarket yet again. I had held him tight as we went through the checkout but let go of him for a second or two to pick up my bags. That was all it took. As I chased after him towards the automatic front doors and into a very busy car park I noticed a stranger was gently holding his shoulder.

“Is he yours?” she asked as she saw the sweat appear on my forehead.

“Yes”, I puffed as I once again held his wrists.

“He has autism and he is heading right for the car park lift. Thanks for your support.”
“I knew right away he had autism. You can tell.”
If I was given just a small amount of money each time someone told me something similar I would be rich.
My son has the type of autism that is NOT a hidden disability.

So what makes his difficulties and diagnosis so obvious?
Is it the fact he flaps and stims CONSTANTLY? I really means constantly! He can not sit or stand still. He shakes things, chews things, flaps things, flicks things, squeezes things and licks things all the time. It is impossible to NOT notice it. His body movements are not hidden.
Is it the fact he can not talk? That may seem like something you would think would not be noticeable but to hear the noises he DOES make it is pretty clear to most people that these are not noises you hear everyday. His noises are not hidden.
Is it the fact he screams? He can scream longer than a fire alarm and more high pitched that a whistle. He screams randomly and inappropriately whenever he feels like it. There is nothing hidden about that in any way.
What about the fact he is still wearing nappies? As much as I try not to show this he thinks nothing of pulling up his top to chew or pulling at his trousers making it obvious. He has no social awareness and no understanding. Yes he could be incontinent for any number of reasons but combined with his noises and movements it adds to the number of reasons why people realise right away upon meeting him that he has autism.
He runs, he flaps, he obviously has learning difficulties, and he behaves quite differently to other children his age. He is sometimes in a wheelchair for his own safety and if I have not got the energy to run a marathon while doing my shopping then I often use a disabled trolley for convenience.
He would rather spend hours at hand dryers in the bathroom than anywhere else in a store, unless they have a lift. He is entertained for hours just watching lift doors open and close and open and close over and over again.
He is unmissable. He is loud. His tongue is more out of his mouth than it is in. He is handsome, cheeky and adorable. I don’t hide him and I don’t hide his autism. He doesn’t hide his diagnosis either. In fact he flaunts it.

People see him and people see his autism. 
Sometimes they don’t react very well to that. Other times, like the beautiful stranger today, they see a child with obvious difficulties and look out for him.
They comment, they look, and they react because my child has the type of autism that is NOT a hidden disability.
For many who are not as severe as my son I understand why autism can be a hidden disability. But it isn’t true that it is a hidden disability for everyone.

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Where does it hurt?

Gwynne - 20151003 -29 - highWhere does it hurt?

Every so often I get a rude awakening that my seven year old is not like other seven year olds. Today was one of those days.

The doctor sat in front of him smiling. “Hi, when did you start to feel unwell? Can I listen to your chest? Where does it hurt?”

Questions doctors ask all the time. Questions a seven year old should understand, have a reasonable ability to answer well and have the verbal ability to communicate to a stranger.

My son continued playing his game on his iPad obvious to us all. At seven he is non verbal.

He is different. But today he was the same as everyone else in that centre. He needed medical attention. He could not wait for his regular doctor to reopen. He was unwell.

And once again I had to be his voice. As best as I could. I can not say how he is feeling. I can not say when he started to feel unwell. So I told them what I could. And that is all I ever can do.

I find myself over analysing everything. Was that behaviour he displayed a few days ago the first sign he might be poorly? Did he not finish his dinner yesterday because he felt sick? Is he sitting in my knee because he is looking for comfort or just because he wants to? How am I supposed to know?

They say a mum has a ‘sixth sense’ but this goes beyond that. When you live with a child who can not communicate the most basic of things such as pain you walk a tightrope daily. I could worry about every bruise, (where did he get that? Has he fallen and I never noticed?) every cut, (is that stinging him in the bath, what caused that and should I find it and remove it in case it happens again?) and every behaviour gets dissected like a science experiment. I become more of a detective than a mother. Or do I just let him be a ‘normal’ seven year old and be content that he is not screaming or being sick today?

My son lives with a silent invisible medical condition. But his autism makes it impossible to know how that condition is truly affecting him.

I could panic every time he is sick. I try not to. A wise doctor told me that statistically despite having a progressive genetic condition he is still more likely to have a common childhood illness such as an ear infection, a chest infection or a virus. As true and as logical as that is I still live with the worry he could be ill because of something much worse.

He has a high temperature and neither the doctor nor us know why.

Where does it hurt?

Well right now I can tell you where that hurts for me. It hurts my heart. And just as there is no cure for my sons condition, there is no cure for my hurting heart either.