Children say the funniest things sometimes. They take things literally, ask endless questions and can melt our hearts with their insights and declarations about the world. Individuals with autism can be very literal in the way they interpret language and may not always understand sarcasm or figurative speaking. If you tell an autistic child it’s raining cats and dogs they may well expect pets to fall out of the sky (and be quite concerned about their safety to boot.)
My DS often makes me laugh very hard. “You said Grandad can play the piano by ear Mum but he’s using his fingers”. Sometimes he says things that make me well up with tears – reminding me of his vulnerability. And sometimes, with his unique perspective, he just damn well hits the nail on the head.
I encouraged him recently to come and look at the sunset through the window. He climbed up on the bed next to me, stood up and peered out. “Wow ORANGE WIND!” He exclaimed. Yes sweetheart, it is orange wind – isn’t it fantastic?
Raising a child with a learning disability has many challenges it’s true, but I consider myself extremely blessed to have the pleasure of his unique daily insights. His conversation is completely unfiltered, no social niceties, no unspoken rules. He says what he sees and what he thinks and that is immensely refreshing.
I’m writing this for the lady in Tesco’s today. This is what I wish I had said as I’m never very good at saying it at the time; I’m guessing you’ve never come across a child with a brain injury before? Because if you had any understanding of the kind of behaviours that can result from such an invisible injury, I doubt that you would have been so shocked and offended by my son. His behaviours are what you might call ‘unexpected’ so your reaction is something we regularly encounter. But recently, my DS is becoming more aware that he is being watched and judged negatively. He just doesn’t understand why.
I wouldn’t ordinarily take him into a busy supermarket. In fact I go out of my way to avoid such situations by getting groceries delivered and making sure we never run out of essentials. Why? Because shopping is just not easy for my son. The glaring fluorescent lights, noises incoming from all directions, beeping checkouts, booming tannoy announcements, crying babies, people down every isle to literally bump into and the queues that are just not possible for him.
As soon as we enter the store, he bolts. He’s running straight up the fruit and veg isle, taking little notice of the people he is barging past, he’s beating his chest with his clenched fists and making a ‘rargh rargh rargh’ sound. All of the shoppers are stopping to stare. First at him, then back at me, perhaps wondering why I am not ‘reining him in’?
I chase after him and try to physically steer him to the pharmacy counter. It’s the only reason we are here, I need to collect this damn prescription – it’s an essential I haven’t been able to pre-plan for and we’ve got to do this. People are still staring as now I am half steering half pushing him in the direction of the pharmacy.
When we get to the counter, there’s a queue. My eyes instantly well up. We can’t queue! ‘Don’t cry don’t cry, you can do this’. There’s a shelf of Easter eggs nearby, I take him there and point at the colourful tempting array of shiny eggs. It’s enough to engage his attention and he doesn’t bolt. He grabs 2 Easter eggs, Peppa Pig ones and brings them back to our place in the queue. He spins around and around on the spot with the eggs, banging them together and repeating ‘stinky peppa pig’ over and over. He runs to and fro between the shelf of Easter eggs and me in the queue as I try to take the eggs from him. Suddenly he notices that you, the woman behind us in the queue, are staring at him, mouth agape.
He approaches you, gets very close to your face, just to check. Then he asks ‘why are you looking at me?’ I hear you gasp in horror at the insult you feel. You’re muttering to your companion ‘OMG how dare he, blah blah’.
I can feel your eyes burning a hole in my back as you are demanding an apology, you want me to grovel.
What I should have told you was that he was not being rude. He really wanted to know why you were looking. Despite my very best efforts – with behaviour charts and flash cards and explanations and rewards, he doesn’t understand that his behaviour is unusual. Neither does he know how to be rude. He just wanted to know why you were looking. Did you want to engage with him? Did he know you?
What I wanted to ask you was this – would you stare agape at a child in a wheelchair? A child with a visible disability? Probably not I would hope, because that would be rude right? So, why do people feel it’s ok to stare at children with learning disabilities? I think my DS asked a fair question. Why were you looking at him? And I didn’t apologise or explain as I felt it was a matter between you and him. It is very obvious that he has a disability and we have as much right as everyone else to be out and about collecting a prescription.
And what you don’t know is that every time we leave the house to go out to a public place, I am filled with dread and anxiety about how people like you will react. And every time we get back home, I close the door, lean against it shutting the hostile world out and breathe a heavy sigh of relief vowing that we will never venture out again. But we do. And each time, we hope and pray for more acceptance, understanding, compassion and kindness from the world.
Today you invented a new word. Spectrumy. What does that even mean?! I was talking to you, my neighbour and acquaintance of over 7 years and the subject of DS’s Autism came up. “Oh yes my children are ‘spectrumy’ too” you told me.
And… “I have very difficult children, they are extremely sensitive”. You went on to say “We are all ‘spectrumy’ in my family…though more the Asperger end.” (You said this like you thought Aspergers was the more elite end of the spectrum!)
Yet I imagine you know nothing about the very real and often completely unmanageable daily stresses of people really living with Aspergers syndrome – so your self diagnosis makes me feel hopping mad. In my mind you are belittling everyone with Autism. Your children, who often come to play in my garden, do not appear ‘spectrumy’ to me in any way, shape or form.
I want to tell you what autism really means for our kids but I don’t know how to begin. A dear friend springs to mind, whose non-verbal child smears poo on his bedroom walls and regularly bolts as, like so many autistic children, he’s in a constant state of fight or flight. He needs 2 adults to keep him from harm and hold him safe when he has a meltdown.
I tried to tell you how people don’t understand when my DS bangs his chest and roars like a gorilla in the face of strangers when he is stressed and you just laugh out loud. You think I must be joking. Exaggerating.
I’m sorry to hear that your children are sensitive. Then surely you must know how it feels when they can’t cope with the lights, noise and crowds in a shop and they lie on the floor beating the ground with their fists? When they need a weighted blanket to be able to sit for five minutes to give their bodies a rest from the constant hyperactive over stimulation that they are never free from. And even then, how you have to hold them still. How they need to rock, spin, hit and hug themselves constantly in order to feel regulated? Or is that not the kind of sensitive you meant?
A few weeks ago, it was you again who felt you must comment when you saw me struggling to unload a big boys bike with special parent handle from my boot. You told me I was likely too late in the day to teach my son to ride a bike (he’s 9). You told me that you have to ‘get them when they are young’ like you did.
What you fail to comprehend is that my big boy is not like your kids. When he was younger, all he wanted to do was spin around and around and sit under the table lining up toys in precise rows. You obviously know nothing about developmental delay – of how it can be both physical and cognitive.
You have no idea that DS can’t use the pedals even now, that he doesn’t have the strength in his legs and feet, nor the coordination to pedal and steer, not to mention the concentration and focus needed to ride a bike. That he can’t bear to keep holding the handle bars because he needs his fists to beat his chest. That he always bangs on his chest with clenched fists when he’s stressed and that sitting on the bike makes him feel stressed.
You don’t know that unless I take him out on the bike with the special handle, he will never have the experience of riding a bike. But I don’t ever expect him to graduate to riding freewheeling without the parent handle and yes I am happy to push him along with the special handle for as long as he can cope with giving it a go. Because it’s a bike; he’s a boy. It’s what we do right?! This is what we need to do before we give up and apply to a charitable fund for a special needs trike.
Oh but shouldn’t you know all of this already though? As your children are ‘spectrumy’ too right?!
I don’t say any of this though. I mean where do I even begin? I just nod and grimace. This post is for all those SEN parents out there having to deal with a lack of awareness. Who hasn’t heard someone say “oh but we are all a bit autistic right?” “I file my paperwork in alphanumeric so I must be on the spectrum”!