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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Is your other kid normal?

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‘Is your other kid normal?’

How would you feel if someone asked you that?

Before I let you know how I reacted to that I want to start by looking at the dictionary definition of ‘normal’.

According to The Oxford English Dictionary the word ‘normal’ means: conforming to a standard; usual, typical, or expected.

In other words this stranger was implying my son is not standard, or usual, or what was expected. He does not fit societies stereotypical idea of a seven year old. He is different. He is unique. To the stranger he stood out as exceptional and out of the ordinary.

Do you know how proud that makes me of my son?

I love that he is different. I love that he does things in his own way, at his own time and he has no concept of following the crowd. I delight in the ways he shows excitement by flapping, making high pitched noises and spinning. I smile when I watch him making his own delicacies like pizza with custard and yoghurt with mashed potato. I find it refreshing how he would rather watch lift doors than spend money on toys. I dance around with him in glee at watching yet another person use the hand dryers in the public bathrooms.

He is funny. He is loveable. He is energetic. He gets bored clothes shopping and thinks he knows better than me at times. Those are all ‘normal’ things that seven year old boys do!

He has brown hair, Hazel eyes and a love of technology. He is average height and weight for his age and even his shoe size is right on target!

So why would a stranger ask me if my other kid was normal?

She looked at my sons disability. She looked at the fact he is unable to speak. She looked at his poor balance, his different mannerisms and noises and she saw him as less, not conforming and not typical. Her question implied I should be sad for having such a unique child and craving a child without any such challenges. Maybe I should be sad I have to see to his every need at seven? Maybe I should be broken hearted he is not yet potty trained and not speaking?

I refuse to judge this stranger. Why? Well a part of me used to be there. My heart ached for the things my son could not do. My body ached pushing him around in a chair for all the years he could not walk. My ears would love to hear his voice.

Now I see my son differently. I see him as beautiful. I see him as wonderful.

He IS normal. His sister is normal too.

Normal according to the dictionary is conforming to a standard. If you see the standard as being human then there really is no such thing as not being normal.

So do you want to know how I replied?

I simply smiled and said softly ‘Yes. I am blessed with two amazing children. Thanks!’

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“I’m sorry, he has special needs”

I found myself saying this to someone earlier today. I hate having to apologise or explain my child’s behaviour to strangers but sometimes he is so ‘out there’ that I have to say something.

On this occasion we were visiting a local supermarket restaurant and Isaac had wandered off (he won’t sit for long) so I had gone in search of him. To drag him back or even try to persuade him to come back and sit with us would result in a massive screaming match so I try to watch him and pick him up only when necessary. He would never cause willful damage and just needs to explore and move around as part of his disability. But today he was in full ‘autism’ mode and very excited. He was walking, flapping and being very vocal and became very excited when he saw two ladies eating something he liked the look of. They also happened to be sitting on a window seat which makes him even more excited (not sure why but it does). So I watched my 4 year old boy, who to everyone looks perfectly normal, walk up to this table flapping his arms and making noises and heading straight to their table. He then stopped, looked at their table from strange angles and clapped his hands like he was cheering them on. Had he moved on I could have coped with this strange behaviour and said a silent prayer that the ladies would not try talking to him and carry on like nothing had happened. But Isaac turned around and walked to the centre of the restaurant before immediately turning right back and repeating every action he had just done all over again to the same ladies at the same table. Oh dear. One of those moments you just know is going to end in tears.

I was still reluctant to intrude on my son and hoped his short attention span and sensory processing problems might lead him on to somewhere else quickly. But something about these ladies, something about their food or the seats they had chosen to sit in where clearly interesting to Isaac. He was off again. The ladies tried to ignore him but I defy anyone to ignore a strange child who comes to you when you are eating, flapping his arms like a bird, looking at you through strange angles and tilting his head to the side and then stops right at you and claps his hands wildly making strange noises like a seal.

So I went and explained. “I’m sorry, he has special needs”. Well I guess that was pretty obvious by now! I picked my son up, kicking and screaming and took him out. I never did get to finish my lunch. And I really don’t know what they thought of my kids behaviour.

I don’t like apologising for my children’s behaviour. But I have to. There are so many social ‘norms’ and rules that people expect both from other adults and children. They say people with autism don’t understand social rules. My child does not even know social rules exist! He looks normal (discounting the strange way he looks at things, the strange noises he makes and the flapping and clapping) so it is expected he will behave ‘normal’. He isn’t in a wheelchair or walking with the aid of a walking frame. He doesn’t wear hearing aids or even glasses but he still has a disability.

And I want him to have a life. I want to take him places and let him explore. I know there will be times like today when he is too ‘out there’ and draws attention to himself. I know plenty of people will have seen him today and passed judgement. On both Isaac and myself. I know some people will feel I allowed him to go too far today. It is a difficult balance. The balance of allowing him to be himself, accounting for his developmental age and disability and that of acceptable social norms and rules and preventing him from ‘disturbing’ others. I walk a fine line every time I take him out. But I will continue to take him out.

Every day I take him out I am going to have to say to someone “I’m sorry, he has special needs”. Some days I will be saying it with pride. He is my boy, even if I have to apologise that he has done something you don’t understand or that has upset you, I am proud he has made it into the shop in the first place. I am proud he is walking. I am proud he didn’t help himself to your dinner! Some days I will be saying it with sadness that society still isn’t used to seeing enough ‘different’ people to understand and tolerate disability in all it’s forms. Some times I will say it in embarrassment as his behaviour crosses the boundary of ‘acceptable’ (oh there are too many ladies bums and boobs he has now touched as we pass in the trolley) But other times I will be saying it to educate.

I guess today I said it for all of those reasons. Maybe I should just wear a t-shirt saying “I’m sorry, he has special needs” but then again maybe, just maybe, a combination of more education, tolerance and understanding plus perhaps my child slowly learning what is ‘acceptable’ would mean one day soon I will be able to take Isaac out in public without having to say “I’m sorry, he has special needs.”Image