I still remember the day we were sat down and told Josh had ASD, Autistic Spectrum Disorder. I remember hearing echoes and everything merging into one blob of fuzziness as I stared gormlessly at my child who was mumbling to himself in a corner.
Oblivious, he was lining up cars in height order, involuntarily shaking his head at the repetitiveness, before erratically destroying it and then starting the whole process again.
It was only when our Paediatrician rubbed my shoulder and said: “you know it’s ok to cry, no one’s judging you now.”
At first, I thought, thank you so much for pre-empting what you know I want to do; cry, sob and scream, WHY!?! But just as a single tear rolled down my cheek. “No one’s judging you now.” Hold on, so you were all judging me before this? You were all thinking we were terrible parents, and that was the reason why, as a toddler, he used to smear his poop everywhere?! Trying to get him to go to sleep eight maybe twenty times a night because he wanted to know what the meaning of life was, or how many molecules are in the ocean, or because he couldn’t sleep without knowing about the exact height and weight of a T-Rex. All of that was because we were doing something wrong as parents?
What a truly ridiculous thing to say. “No one’s judging you now.” Because they are aren’t they? Everyone is. Friends, family, acquaintances, random strangers, neighbours, people you’ve just met. Everyone judges Autism, even kids who know nothing about it.
You see, although we started the process of getting a diagnosis for Josh, it’s still a shock when it happens and you hear those words. There’s a cloud of realisation that blows over your head, and stays there, raining on you for what feels like forever, and you’re so numb, you can’t even get your metaphoric umbrella out.
So when I shakily say between tears “he’s got Autism” to which you bluntly reply “well isn’t that what you wanted them to say? I thought that was the point of all this?”
Well, that comment made me stand back and question myself as a Mother, as a person and as a friend. What was the point of all this? Am I right? Are they wrong? What are we doing?
However, we did do the right thing. Therefore, what would have been a better response is diplomacy – yes, that was the point. But does that make hearing it from a medical professional any easier on us as parents? No, it doesn’t. Are you a parent? No, you’re not.
Sometimes I don’t want you to say anything; I simply want a cuddle and an “It’ll be alright” so I can then shout back at you “BUT NO IT WON’T WILL IT?!” And as a friend, a true one, you’d take that, and you wait for me to collapse on the floor and feel lost and alone and understand that our entire world has just come crashing down around us, so I deserve to be a little bit angry right now. But the one thing we need as a family? You, there supporting us. We’ve been best friends since I can remember and you were the one person I thought I could count on.
Your Shattered Friend
I know that when you were younger, things like Autism didn’t exist. I know that’s what you honestly believe, but it did exist then too. However, now there’s a “label” to put those diagnosed people into little boxes.
Saying things like, “look, there’s nothing wrong with him” doesn’t help either. There is something wrong with him, and I admitted that a long time ago. Now you need to recognise that collecting chewing gum from bus stops and from under tables, and storing it in a metal tin isn’t deemed as “normal” behaviour in society. Having a box of rotting leaves, an elastic band, dog fur, a feather and a bit of hard Playdoh next to your bed also isn’t “normal” behaviour.
Equally, having the other side of the family voice their opinions doesn’t help – the “oh my god, he’s never going to be able to do anything on his own ever again.” Well, yes, he will. He’s survived this long so I’m sure he can carry on the way he is going. But please, can’t we all be accepting and forgiven of his quirky behaviour?
Yes, I know our mutual friend has told you about her friend’s crazy kid.
That’s me. And that’s him.
So rather than staring from across the room, coming over to say hello may have been a nicer thing to do. However, please, do fuck off and drop the nonsense. I know you’ve heard stories about what Josh has done and what we have to put up with, so just come out and ask if you want! I’d rather that than the Bafta award-winning drama scene of “sooooo, do you have children? Ahhhhh, which one is your son?” And as I point to the one licking the window with his hand shoved down his pants PLEASE for the love of God don’t say “oh, he’s lovely isn’t he…”
Dear Random Stranger,
Yes. Your eyes are not lying to your brain. My child is wearing a fairy outfit and has now thrown himself on the floor shouting “FUUUUUUUCK” at the top of his voice while holding a spatula that he desperately wants me to buy – for no apparent logical reason whatsoever.
And yes, in your mind it may be a good idea for me to just buy the spatula, but you see that then opens up a whole can of worms because what about the next thing he wants me to get?
And no, this isn’t just a kid having a tantrum, this is something slightly more than that. In your mind, I may look like a shit parent. Lord above knows I feel like the shittest parent in the world right now, but if I intervene too much he will repeatedly slam his head into this tiled floor because he doesn’t understand emotions and he can’t rationalise pain – do you want to witness that?
Why don’t you just carry on with your shopping and then do the obligatory look back at me and shake your head in disgust like you always do? I’m used to it. I’ll go home and cry, so I don’t feel embarrassed by my own tears in public.
A Confused Nobody
You know that I know, that you know, that you know us, right? And I know you. You live down my road.
There’s no need to cross the road when you see us. My son is not going to attack you. He’s never attacked anyone other than attempting to strangle me and stab his little brother, but that’s irrelevant, he won’t do anything to you.
He can’t even make eye contact or speak to strangers, so I think you’re perfectly safe.
Next time, if I’m gardening, just say hello. We are human. Don’t pretend you’re talking on your phone; I know you aren’t. I’m not going to pin you down for an hour-long chat about what Autism is. I’m just going to smile and say hello back.
Oh, and by the way, you know when there was that incident in the street where a neighbours car got hit by a group of kids on bikes – that wasn’t my son as you tried to make everyone believe. It was your bastard child. Because I saw the little sod do it and cycle off laughing. Just because my kid has Autism doesn’t make him a trouble maker.
A Crying Mess
Dear Person I’ve Just Met,
Parents chatting at the park is normal. We all do it to be friendly. That’s nice. We just had a pleasant ‘Mum Chat’. Therefore, try and continue to be friendly all the time – even after the small talk and you’ve clocked who my kid is, just try.
You don’t need to continuously look at me and then look at him, gesturing for me to do something, while you point us out to someone else.
I know he is putting his finger in each individual hole of the swing chain, and I know there is a queue for the swings, but just because society says we should swing on a swing, that doesn’t mean we have to. How is apparent offending you…? The purpose of a park is to play. He’s playing. Why can’t you speak to your child and explain, rather than me speak to my child and rationalise?
Because you do realise that a park is a public place, don’t you?
And I’m sorry, I know he just pushed in front of your daughter to get on the slide first, but you don’t need to glare at me like that and tut. I am walking towards him trying to get him to understand that he can’t do that – you’re watching me trying to get him to understand. I apologised to you and your child when he did it, so why do you feel the need to say as loud as humanly possible “come on darling, let’s go and play somewhere else AWAY FROM THAT BOY!” It’s quite obvious he has learning difficulties.
Please. Build up other Mums, don’t tear me down, I’m doing my best.
An Always Sorry Lady
You are probably thinking ‘what is Autism?’ Autism is something you are born with. You either have it, or you don’t, but you can’t catch it like you can a cold. If someone has Autism, it means their brain is put together slightly differently.
Children with Autism are just like you and me, but they may act differently or behave differently to other children you know. Sometimes one day they might appear to be acting like everyone else and then all of a sudden they do not. However, that doesn’t mean that you can tease them or be mean. Just because they may not appear to be listening to the cruel words you are saying, they can hear the harsh words you are saying, they just haven’t processed the information in the same way, and reacted in the same way you would if you heard someone saying nasty things about you; like becoming upset, or angry.
Emotions are difficult for people with Autism because they cannot understand language, gestures, social situations and body language with regards to communication, and the relevance of this with emotions.
It’s a complex pattern you and I naturally follow without thinking, but people with Autism are unable to work in the same way.
So now you understand a little bit more about it, do you remember that time you all sat in the classroom rocking and chanting like he was? Yeah, that continued to affect him three years later.
And you remember when you said he couldn’t play with you because “his brain was broken”? He still carries that voice in his head now.
Equally, as you got to know him and the things he hated; snapping all of his crayons so that you won the drawing competition was plain horrible, no matter how old you are.
Putting his coat inside out because you knew that would stop him from leaving the class at lunchtime. All because you didn’t want him on the team.
And gathering everyone to watch him through the window, on his own, while he manically fiddled with Blutac to calm down after he had a meltdown, that was nice wasn’t it?
I could go on.
You shouldn’t be cruel to anyone, but would you behave that way to a child in a wheelchair? Just because you cannot see Autism as a disability, it doesn’t mean it doesn’t exist. I’m hoping maybe you will learn to understand and possibly be a little more accepting of Autism one day. And when you do, tell your parents that the meeting they had to have my son removed from mainstream school was the lowest of the low – bearing in mind your parents knew our situation. So with that in mind, I’m glad that when he pissed in the middle of class, you all got the splashback over your shoes. Karma’s a bitch sweetheart.
An Angry Parent