Many, many years ago, J was diagnosed as being autistic / having autism. There is still much debate as to how that should be described… should you use person-first or identity-first language? For a long time, I was confused about the whole thing, but when J started to speak, he always identified himself as ‘autistic’ (rather than ‘having autism’) so we went with that. I’m quite happy for him to define it the way it feels best for him… If he changes the way he defines himself, then I’ll certainly respect that and follow suit. It’s fair to say, here at TPK, we are totally into autism appreciation!
But it wasn’t always the case, and I’ve had a harsh reminder of that recently… During a recent (major!) clear out…. I sorted out all of our old computers and cleared the hard drives before recycling… and some of the documents that I wrote (I’d say around 2012) are hard reading…. written at a time I was only just about dealing with autism awareness…
And then, I found this poem… written just as I was moving from awareness to acceptance and appreciation…. I’m no great poet, but it made me smile (and cry a little bit) so I thought I’d share it. For anyone who is dealing with a diagnosis of autism or other SEN for their child… it’s hard… but it gets better… and better.. and one day… you’ll realise that you did make it!
One day, there was a knock at the door
I won’t try to lie, I didn’t like what I saw
Autism stood there. He is coming to play
What the hell do I do? What the hell do I say?
I want to shout ‘NO!! Just please go away
Don’t come in, don’t sit down. I don’t want you to stay’
But something stops me… what can I say?
Because autism is here and he’s playing with J
The child that I love more than words can describe
More than droplets of water or stars in the sky
More than every grain of sand on the beach
And I’m scared autism will take my son out of reach
I am scared because of the things I am told
About autism and about his stranglehold
Over J and I don’t know how to release it
When I try to break it, he seems to increase it
But I refuse to stand by until autism trips
And comes crashing down with my son in his grip
For J and autism, they play hand in hand
It no longer matters it is not what I’d planned.
Autism wasn’t my choice as a playmate
But unless I take charge, then we are in stalemate
And I make a pact with myself; I’ll befriend him
And I realise sometimes I’ll have to defend him
There are times when we’re out and people will judge
And sometimes that hurts, but my mindset won’t budge
My son needs a childhood; He deserves to be happy
I no longer care that’s less mainstream; more flappy
So, I’m finally getting to know my houseguest
There’s so much more to him; though at times he’s a pest
What the world sees as different and naughty and wrong
I see a shy little boy who is wilful and strong
A boy who keeps trying when he’s deemed unable
Who care more for the feel and less for the label
Of the clothes that he wears… Is that really a problem?
You might see it as odd. I see it as awesome.
My point is: Autism isn’t a monster
He’s a shy little boy and I don’t want to squander
The chance that I have to change the perceptions
Of autism, or challenge the misconceptions
So, for those who don’t know and look from afar
Remember, I once was in the place where you are
Yes, this looks different. No, you don’t understand
But don’t be offended, for this was not planned
Autism never set out to offend you
Infact, if you’d let him, he’d try to befriend you
And you’d see that he’s just a shy little boy
Who didn’t mean to be naughty or to annoy
Infact, it’s quite likely you never entered his head
This is not about you… so try not to see red
This wasn’t the life for which I had prepared
But believe when I say…. there’s no need to be scared
There are things in this world that you don’t even notice
But to this shy little boy, they are strange and ferocious
There are so overwhelming and he doesn’t know how…
… to cope. He just knows he has to leave now
And yes, he might struggle with your conversation
But if you would just listen, you would have admiration
For this shy little boy who was deemed so unable
Knows all of the elements on the periodic table!
And this shy little boy knows all about trains
And facts about dinosaurs buzz in his brain
He’s faster than Bolt; He’s Houdini with locks
yeah…. some of his talents are unorthodox….
Autism and J… they remain best of friends
It’s hard to see where one starts and one ends
And I’m learning to live in this strange universe
I now see the blessings. I don’t see the curse
But this is a world that is trying to label
A spectrum and you will find you are unable
To fit us, neatly, into a container
I guess that’s why I’ve become a campaigner
Because we live life outside of the box
Yes, sometimes it’s hard but mostly – it rocks!
And, if after my story, you still don’t see his powers
I’ll politely remind you, that’s your problem… not ours
And my point remains: Autism isn’t a monster
Just a shy little boy and I’m trying to conquer
The prejudice he encounters each day
Together, I know, we will make it. One day.