As a Mom of a young man with autism, I am always trying to understand how Caleb is feeling. It's a mystery a lot of the times - even things that may seem obvious (like a big angry outburst) may actually be less about feeling angry at something initially, and more about how he's not being understood. Sometimes I can tell what he's feeling (he's getting a lot better at sharing his feelings with us), and sometimes I just can't.
Recently there was a story from the National Autism Association (I saw it in The Mighty) about a 10-year-old boy named Benjamin, who’s on the autism spectrum.
This boy wrote a poem titled "I Am", and it opened my eyes and broke my heart to the feelings of kids with autism. I realize not every child will feel the same way as the child who wrote this poem, but getting a chance to peek into the mind and feelings of someone with autism is enlightening.
His mom sent the poem in saying “he was given the first 2 words of every sentence. This is what he wrote...…"
I am odd, I am new
I wonder if you are too
I hear voices in the air
I see you don’t, and that’s not fair
I want to not feel blue
I am odd, I am new
I pretend that you are too
I feel like a boy in outer space
I touch the stars and feel out of place
I worry what others might think
I cry when people laugh, it makes me shrink
I am odd, I am new
I understand now that so are you
I say I “feel like a castaway”
I dream of a day that that’s okay
I try to fit in
I hope that someday I do
I am odd, I am new.
Lately I've been listening to the soundtrack for "Matilda The Musical". It's such a wonderful and funny soundtrack, but there is one song that when I heard it for the first time, I just started to cry.
In order to understand Caleb better I often try to put myself in his shoes. I imagine what colours & sights, sounds, lights, touch & taste must be like for a young man with sensory processing problems. I wonder how it feels to know you're about to unravel and have a "meltdown", and if it's possible to stop once you're heading down that track?
I feel like this one song, titled "Quiet" from Matilda The Musical, gathers up some random thoughts that I think could describe people with autism and what it feels like to become overwhelmed with what is going on around around them. But, more importantly, how it feels when they block it all out: whether by those characteristic, quiet, "zoned out" moments kids with autism have, or by covering the ears and shutting the eyes up tight. Or perhaps physically having a big fit, with kicking, screaming, etc.? I know that last one doesn't seem "quiet", but I imagine having all the things that can't be said trapped inside. All the things that pile onto a person with autism, who is trying to process this crazy world as best they can, and how maybe having this big, physical outburst is like draining all the noise, the smells, the sights, and the mountain of everyday stressors out of the body, and being left quiet, and feeling tired, but better?
I've included a video of one of the Matilda's singing this song because the emotion behind the acting and the music help to fully capture what a child with autism might be feeling.
**Disclaimer: this song (as far as I know) wasn't written with autism in mind, it's just what I've heard in the song that sounds like autism to me*
By: Tim Minchin
From Matilda The Musical
Have you ever wondered, well I have.
About how when I say, say red, for example.
There's no way of knowing if red
Means the same thing in your head
As red means in my head. When someone says red
It's as if we are traveling at, almost the speed of light
And we're holding a light
That light will still travel away from us
At the full speed of light, which seems right in a way
What I'm trying to say, I'm not sure
But I wonder if inside my head
I'm not just a bit different from some of my friends
These answers that come into my mind unbidden
These stories delivered to me fully written!
And when everyone shouts like they seem to like shouting
The noise in my head is incredibly loud!
And I just wish they'd stop, my Dad and my Mum.
And the telly and stories would stop just for once!
And I'm sorry, I'm not quite explaining it right.
But this noise becomes anger, and the anger is light
And its burning inside me would usually fade.
But it isn't today!
And the heat and the shouting.
And my heart is pounding.
And my eyes are burning
And suddenly everything, everything is.......
Like silence, but not really silent.
Just that still sort of quiet.
Like the sound of a page being turned in a book.
Or a pause in a walk in the woods.
Like silence, but not really silent.
Just that nice kind of quiet.
Like the sound when you lie upside down in your bed.
Just the sound of your heart in your head.
And though the people around me.
Their mouths are still moving.
The words they are forming,
Cannot reach me anymore!
And it is quiet.
And I am warm.
Like I've sailed.
Into the eye of the storm.
It can be hard to grasp what a person with autism may be feeling, but it's important to try to understand, and to help the individual with autism learn how to express those feelings in a way that helps them feel understood, accepted and loved.
Stop right now and imagine you are at an event. It's just really familiar people, so the conversation is easy, food is great, weather is perfect. How are you feeling? Could you express your feelings exactly and perfectly to someone else at the party? Would they fully understand? The answers to those questions may all be yes.
Now, you're at that same party, but you have autism. The faces here are all of friends, but they are all talking at once, and even though someone is speaking directly to you (which is stressful), you still hear every other conversation around you. The food is unfamiliar....it seems like everyone else is enjoying it, but you take a bite of something and it makes you want to gag. It doesn't taste bad, it just feels strange in your mouth. You see each colour around you 10x brighter now, maybe so bright they're blurring. Your nice party clothes feel like they have tiny little claws and they are digging into your skin to stay on. How are you feeling now? Could you express your feelings exactly to someone else at the party? Would they understand? Oh, I forgot to mention that your expressive language skills are extremely lacking.
How one must feel when the world appears completely different to them is beyond me. I try to understand, I try to have empathy, but can I ever really know?
Finding things like the poem or song mentioned above help me stop and re-consider what I know about how my son feels. It gives me more insight, more words to use to help him when he's lost for ways to express himself. It keeps my empathy warmed.
Feelings are so confusing in general, right? They are subjective, abstract, and complicated. So, add in some of the usual things people with autism are dealing with like trying to understand social cues, expressive language (saying what's in your head), and processing what you're physically feeling from the excessive sensory input, and trying to separate that from what your feelings are....? Geepers.
Show some extra grace to those who need it. Offer a word or two to help the person express the feelings that are present, and above all, remember that individuals on the autism spectrum have feelings, whether or not they appear as you'd expect them to.
Hi, I'm Amy-Lyn!
I am the lady behind this here blog! I live in the sticks with my animals, my super handsome husband, and my
3 amazing kids!
Here you'll find things from recipes (gluten-free, paleo, and strait up junk food!), DIY ideas, thoughts on raising a son with autism, and whatever else pops into my brain! : )
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