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 
Completely understand and agree. More kindness would go a long way. Sadly the tolerance the world shows to a toddler they assume is having a tantrum doesn’t extend to a teenager or an adult having a meltdown. More tolerance, understanding, kindness but less judgment would be wonderful! 🙂
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Oh such a powerful post and so beautiful as all your posts are. xx #KCACOLS
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A superb post and a great use of imagery to explain a tricky concept.
#KCACOLS
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A beautifully written post. I can really feel the emotion. Thank you for sharing it and for educating me. Pen x #KCACOLS
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Such a lovely and very emotional post… I hope your little one got the appropriate help he needs. I think you’re so brave for sharing your sentiments with your readers. Thank you. #KCACOLS.
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Beautifully written and very insightful. Thank you for sharing #KCACOLS
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this is a lovely post, so well written. It will definitely help to educate for people like me that haven’t experienced this #KCACOLS
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Such an honest and emotional post. Thank you for sharing it.x #KCACOLS
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Just lovely. I do think people are getting better as they’re becoming more educated…or maybe I’m naive. #KCACOLS
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Thanks for sharing your experience and your son’s. You have articulated it so well so others can at least try to understand what it feels like to be autistic. A very important post. #KCACOLS
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Very insightful and wonderfully written xx #KCACOLS
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So beautifully written. 👏 👏 👏 thank you for this tiny glimpse into autism. #KCACOLS
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How lucky he is that you understand his complex emotional responses. You will always be a real asset to him and a true advocate. Thank you for sharing.
x Alice
#kcacols
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Such a powerful posts. You have changed the way I view the screaming kids I see at work. Sometimes I just stop and wonder if behind the screaming instead of a bratty kid is a child who is experiencing something else completely. We need to be more understanding and stop judging everything. Beautiful post 🙂 #KCACOLS
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This is such an insightful post. From this and many of your other posts I feel I’ve developed a better understanding of autism. #KCACOLS
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So beautifully written. I had the same feeling of despair and the world stopping when we were told my youngest boy was seriously ill and had a tumour. Hopefully though he is fixed, Autism is your family’s life long journey. Thanks for sharing, it really does remind me of the Harper Lee’s To Kill a Mockingbird, “You never really know a man until you understand things from his point of view, until you climb into his skin and walk around in it.”
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This was a wonderfully written post and very useful for explaining autism, thank you. Sharing on FB xx #KCACOLS
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This is an amazing post and such an honest and real insight! I think you’re amazing for writing this, and couldn’t agree with you more – Kindness goes a long way and is such a powerful emotion xx #KCACOLS
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This is such a powerful post, so much of it has made me stop and think about how I react to different things and then the thought process/feeling for a child with autism. Thank you #kcacols
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I think be kind is the most important reminder we can give ourselves. Sometimes, that is exactly what is needed. #kcacols
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It’s easier for people to pass judgement than to take a closer look. When our parents were growing up, child raising was the duty of the community, now it’s become lonelier. It’s sad because now it has become a case of what you see at first glance. I wish there were more people who recognised autism (sorry about the rant) #KCACOLS
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Amazing words, capturing experiences that none of us will truly understand. The hard part as a parent is knowing your child needs certainty, routine and control and doing everything you can to try to anticipate change but having to sit back, helpless, when life happens and things change anyway. Thanks for sharing a glimpse into your son’s world x
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This is an amazing post, you have managed to put into words something that a lot of people have to go through yet not a lot of people completely understand perfectly. It was so powerful and emotive to get a glimpse into yours and your sons world #kcacols
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As if parenting isn’t hard enough, add autism into the mix! You seem to have such a brilliant understanding of your sons needs in relation to this. It would be nice if others could be a little more understanding. Watching him struggle with things we wouldn’t even notice must be very hard. You are very strong, he is lucky to have a mum so willing to see his perspective and not try and mould him into something he isn’t. You have obviously been through a lot.
#KCACOLS
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Im feeling a bit delicate today due to too many hormones and too little sleep. My children do not have autism or any additional needs but the sentance ‘ the lions in the living room ‘ struck a cord with me. No one can tell any of us what the future holds but to have that extra worry always in the back of your mind must be exhausting. There is always ‘hope’ . Don’t let anyone take ‘hope’ away from you . XXXXX#KCACOLS
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What a lovely post. Your little boy is very lucky to have you as his mum. Xxx #kcacols xx
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This is such an insightful post, I feel like you have taught me so much about autism in just this one post. I think just being kind to everyone in general and not judging others is the best way to be, you never know someone else’s situation.xx #KCACOLS
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Brilliant post – this explains it so well. Your son is so lucky to have you! #KCACOLS
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Lovely post, I have experience of children with Autism so I can relate to your post. Its such a difficult thing to explain to people and I imagine you feel like wearing a big sign ‘explaining’ in public sometimes!
#KCACOLS
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Yes I agree that Kindness it what we all need to make our journey easier. great post, beautifully written as always 🌸 #spectrumsunday
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Such a lovely and informative post. You’ve explained it so simply but it’s so effective. I’m sure I’m guilty of sometimes judging without giving any thought as to why a child may be behaving in a certain way. You’ve definitely made me think. Thank you #KCACOLS
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What a great post! A really worthwhile read. Very eye opening, informative, and full of emotion. #KCACOLS
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We all need a little reminder that things aren’t always as they seem. A little kindness goes a long way, as does minding your own business and not judging others in situations you are not fully aware of. Well written post xx #KCACOLS
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This is so beautiful. I don’t have. I have experience with Autisum, but the way you describe it is so personal and touching that I feel like I’m half way there with you. You are so strong! Puts my moaning about kids throwing and pants on the floor into prospective. #KCACOLS
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It baffles me how much I hear about autism today. It’s almost like it’s become a phenomenon but a serious reality. And so many different spectrums of it. I wish for you strength to tackle each and every day. Thank you for hostessing #KCACOLS
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That’s a brilliant post. I grew up with a severely disabled and autistic brother and 20 years ago the world was quite a different place when it came to autism, and it’s very far from perfect now! I love how you’ve explained things here I hope it is taken on board by people who have read it xx #KCACOLS
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Your writing is so powerful as always – so relatable and easy for a reader to really put themselves in that position and understand. I hope this is read by thousands of people – it deserves to be. #KCACOLS
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A lovely well written post and I’m so glad to have read it, i think people’s perceptions are skewed sometimes and it’s words like this that set people straight. Thanks for sharing with us on #kcacols
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Thank you. Such a well written post and so important that everyone should understand and take what you have said on board. You describe it so well – it really made me stop and think. #KCACOLS
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I took my son shopping today. He was the small boy shouting loudly that he didn’t like the noise. The “noise” he was disliking was barely audible to most people in the store (a baby crying some distance away) as all they could hear was my son.
I understand that the sounds pains him but goodness only knows what other people in the store thought. I just kept that smile fixed in place and carried on! #KCACOLS
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My best friend in childhood was autistic and I remember well how hard it was for him when there was change or things weren’t quite right. Thank you for sharing this with us, beautifully written as well. #KCACOLS
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This is a very well written post explaining a difficult subject. Reading this will help people to understand a bit better.
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I think one of the difficult things with regards to autism is that the term itself can’t be defined exactly for anyone – so one child with autism can be completely different in terms of needs and difficulties compared to another. But then I guess the same is true for every child – every child is different and every child has different needs, difficulties, interests … The key i suppose is finding out how to work with the knowledge you have of the child you have and their individual needs and remember they are still the same child, regardless of the diagnosis. It sounds like you are doing an amazing job and you have a really good understanding of how it can feel like for your child. Great post to raise awareness and help others to understand too xx #kcacols
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This is a perfectly written post. It does so much to help someone understand how a child with autism might feel, and to remind people not to judge when they see a child screaming in public about something that seems inconsequential. #KCACOLS
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Amazing and powerful post. So perfectly and beautifully written. So many don’t understand the meaning and affect of autism. Your post gives us an insight into a world so many refuse to appreciate or understand. #KCACOLS
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Beautifully written Danielle. I know all too well the story you are trying to tell. It’s heartbreaking watching your kids go through such challenges, and the rest of the world not seeming to understand. Thank you for sharing
#SpectrumSunday
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I love this post. Not a lot of people understand what a parent goes through when their child is on the spectrum and I think you wrote this post beautifully. You’re doing great! #KCACOLS
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Such a beautiful post. A wonderful way to advocate with your words and give insight in to the multitude of little moments in a day, that can be so overwhelming for our little ones. This post completely explains the panic and anxiety that our children can feel over things that would go unnoticed by others. These are the parts of Autism that everyone needs to be more aware of, maybe then it will eventually lead be less judgment and more kindness. #spectrumsunday
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A post full of emotion and love! What a special boy you have! Thank you for sharing brave and loving Mama! #KCACOLS
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Really powerful writing. Amazing to read and informative too, your posts always reach out to me, thank you!
mainy x
#KCACOLS
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