Autism Acceptance

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

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.

 

2 opinions on “Autism Acceptance”

  1. I love your poem, it brought a tear to my eye. Both of my children are autistic (their preferred way of identifiying) and could relate to every word.

  2. This is such a powerful poem thank you for sharing. It really spoke to me and brings back those days for us after our diagnosis and our journey so far.

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