When was the last time that you felt truly overwhelmed by an emotion? Fear? Sorrow? Anger? Confusion? When was the last time you felt like there was honestly no one to turn to, no way to make it better, no path back to a place where life made sense and the world kept turning?
For me, I suppose it was when we received my son’s autism diagnosis. For a long time, nothing could make it better. For a long time, I wanted rail against the world – scream, shout, tear down the sky. I wanted to demand answers, beg God, the universe, someone, to tell me that it wasn’t true, it was a bad dream, or even just assure me that we would all be ok in the end.
But no such assurances came. No one can tell me what the future holds.
I got up in the morning. I went to work. I played with my children and put them to bed. I loved them, as I always have. The outside world was just as before. It was the internal world that was spinning out of control, the internal voice that desperately pleaded for things to be set right, for this awful, churning bruise in the pit of my stomach to be taken, for the tightness in my throat to melt away.
And eventually, those feelings did subside. They never truly disappear but they became…quieter… manageable. We come to terms with things and learn to accept them. I do not know what the future holds for me, my son, my family. But I know we love each other. I know my son will be what he is meant to be and I will help him get there. That is enough for now.
Now imagine this.
There are three fluorescent lights on each side of the room. One of the set on the left has stopped working so the bars of light are uneven. Yesterday they worked and the bars were exactly the same length. Today they are different. How do you feel?
There is a picture in a book of a small child in the middle of a road on their own. You have been taught that small children should really ask for an adult’s help when crossing. How do you feel?
You always turn right on a certain road to visit the supermarket. But today, although you are on the same road, you are going somewhere else and so you need to turn left. How do you feel?
There are numbers in a book but they do not follow in sequence because they count different objects on the page. They are just scattered – a three here, a five there. How do you feel?
Many people may have heard autism parents or professionals discuss the idea that children with autism ‘need’ or ‘respond well’ to routine. When you experience an autistic child’s desperate fear and confusion when faced with the unexpected, this description seems so inadequate. My son’s way of viewing the world in constrained by a rigidity of thought and action that you can only really understand by knowing him, loving him.
Some days a big change, something we had all been dreading, will seem not to worry him. Other days, the grief and heartache of a different spoon can make him huddle against me, racked with sobs, imploring me to make it better. Sometimes I can make it better. Sometimes I can just fetch the other spoon. But sometimes the light is broken. Sometimes, the other spoon isn’t there, we have to turn left, and the words and pictures in the book are set and cannot be changed.
For him, a different route, a pattern disrupted, a rule broken, a turn of phrase slightly changed – they can make his world spin out of control. They can feel, to him, like finding a lion in the living room. He is so young and the world is so new, so frightening to him – as it is to any young person, finding their way. And so his turmoil cannot not stay internal, like mine would, like yours might.
He rails against the world. He wants to tear down the sky. An uneven light can make him feel like the universe is wrong, wrong, wrong. I see it in his huge blue eyes, brimming with tears. He cannot understand why such an awful trick is being played, why the world would is so unpredictable, so disturbing.
If you saw a child tantruming on the street, refusing to go the way their mother asked, flailing and kicking in anger and frustration, would you think they needed clearer expectations about how to behave? How about if that child were old enough to be past tantrums? Seven? Eight? Nine?
If you saw my boy, sobbing, screaming in a coffee shop because he wanted a chocolate muffin and there were none left, would you think he was spoiled? Would you think that I had indulged him too much, given him too many muffins, not been strict enough?
Now remember that feeling. That desperate, overwhelming emotion – the one where you were lost, had no one to turn to, desperately wanted the world to be put back where it should be. Remember what it is to be full of fear and feel alone.
Remember that feeling and catch a glimpse of the lions in the living room.
Remember that feeling and be kind.
This article was originally featured on the National Autistic Society’s website and you can see it here.
To read more on our autism journey, you may like ‘A Small Thing’.
Linked with:
#KCACOLS with A Moment with Franca
Someone's Mum 
Fantastic post, such clarity in your description of feelings and emotions. It really is an eye opener and will hopefully make people think a little bit instead of passing judgement. #KCACOLS
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This is such an impactive post. I can imagine how heartbreaking it must be to watch your kids go through such challenges. Thank you for sharing this.
#KCACOLS
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Beautiful post. I can relate. Both my children are adopted, and early life trauma means they are pretty much in a constant state of anxiety. This has lessened, but when they first arrived we had to adopt a strict rigid, routine. Even now when holidays arrive, school is over, the routine has ended – the kids anxiety levels increase and we’re into meltdown mode. They hate unpredictability! Stay strong, I know its tough, but with your love and support he’ll get there! #KCACOLS
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Great post. Too many judgey people out there who don’t know about the lions. We carry on regardless 🙂
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Very thought-provoking. It is so easy to jump to judgemental conclusions when you see children acting up in public, but since getting to know a couple of friends’ kids with autism, I am much more tolerant/understanding – thankfully!
#kcacols
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really interesting read. I’ve read a few posts recently from some fab bloggers about autism and it has certainly helped with my understanding of it. thanks for sharing 🙂 #KCACOLS
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So moving, and so well written . My heart breaks for my son when I see the anger building up inside him. He’s so little, it must be terrifying for him. Thank you for writing #kcacols
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As an autistic person experienced it and it doesn’t get any easier as an adult. Hopefully over time there will be more awareness and more acceptance. People are quick to pass judgement and it’s hard. Luckily more people are accepting in my experience from when I was a child X #kcacols
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A lovely piece of writing. It’s helped me learn a great deal xx
#KCACOLS
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That’s so beautiful. I have no experience of dealing with autism, but can truly empathise. #KCACOLS
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I am speechless. Very powerful, wonderful, thought provoking post. Thanks for sharing! #KCACOLS
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A beautifully powerful post x #KCACOLS
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Oh my goodness. This post really made me think about the scenarios. It’s so true we live in a world where snap decisions are made all the time. Sadly not everyone is kind. #KCACOLS
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You’ve explained it so well. Having autism in my life has made me much less judgmental. I don’t know what’s going on in other people’s minds and bodies. I don’t know if someone else’s entire understanding of the world has been challenged just as I get a snapshot of their life.
#SpectrumSunday
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This is so beautifully written, eye-opening and thought provoking too. Really enjoyed reading. Thank you. #KCACOLS
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Beautifully written – such an important message #kcacols
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this is such a powerful post, thanks for sharing and reminding all of us to be kind
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Since my stepson was diagnosed with Autism 5 years ago I’ve read many descriptions of what Autisim is like.
This by far is the best!
We’ve had stares because of meltdowns, when he was promised chocolate mice for being good at a Dr’s Appointment, but the shop had sold out. Wailing and flailing because we had to go to another store as oue usual one didn’t have some items we needed.
A fantastic post.
#kcacols
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Such a powerful post. Those emotions can be difficult for an adult to handle let alone a child. We can be so quick to judge people so thank you for the reminder that we need to be kind! #KCACOLS
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Great post. This all relates week to how I felt about my son’s diagnosis and his meltdowns. I wish I could stop worrying about other people’s reactions when he can’t cope and realise that they just don’t understand. #kcacols
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Really powerful post and a real eye opener! #KCACOLS
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Everyone should read this (and many of your other posts) whether they are in the same situation as you or not. You break it down so that it is understandable for an an outsider to get an idea of what life is like for you and perhaps even more importantly for your son. Thank you for always sharing so openly and honestly. #KCACOLS
Nadia – ScandiMummy x
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There is nothing more heartbreaking than seeing your little one become overwhelmed because the world around them does not meet their expectations.
Your post really brings it to life, so that others may understand just what it is like.
#spectrumSunday
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That’s a really great way of explaining it. I always remember a little boy with autism in my mum’s school many years ago, who was really upset because they were told they could bring in their ‘teddies’ for Children in Need. Of course, most of the children interpreted that to be any favourite soft toy, not specifically teddy bears, and he just could not cope with the fact that the instruction had not been followed in the manner in which it had been phrased, so he kept shouting at other children if their toys were not bears. The other children didn’t see any problem with their toys, and the story can even sound kind of amusing. But, of course, it wasn’t for that little boy – he was truly distressed that things were not as he believed they should be & therefore something was very wrong, and it disrupted the entire day for him. The key to understanding I think is exactly illustrated in the examples you use – it is in realising that some people do not feel the same way about something out of place or unexpected as you would yourself. Therefore they don’t react the same way either. Their reactions are just as reasonable a response to how they feel about the situation as anybody else’s. #KCACOLS
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