What Christmas is like for someone who has autism...

Ahead of her climb up Kilimanjaro in September, 2020, mum of six LENORE GOOD, who has four children on the autism spectrum, writes about her family’s experience of Christmas
What Christmas is like for someone who has autism...
Lenore Good and family, visiting Santa.

PICTURE the scene: Home Alone is on the TV, manic, people everywhere, 327 conversations all going at the same time, he is leaning across you, her perfume is giving you a pain in your head from the other end of the table — you know as you can feel the static in the air — loud Christmas music is playing, the lights are flashing on the tree...

If you could just have one slice of the only cheese pizza you like, that little bit of comfort from this totally unfamiliar setting, it may help you refocus. You see your cousin, the one the same age, who you are constantly compared to, taking bites out of each slice of your cheese pizza, maintaining eye contact with you while licking the last slice, knowing very well it will upset you. You feel the anger bubbling up from your toes, if you could just have a quiet corner and a slice of that cheese pizza, you will be able to remain calm.

Your cousin is now spitting out the chewed pizza, not even wanting it, the rage is rising to your knees, if you could just get to a quiet space and make your way out of the room, you will be able to be calm.

As you go to move, a relation is demanding a hug, you really don’t want to give them one, you barely know them, you don’t like their deodorant and it makes you uncomfortable, you ignore them, hoping they won’t ask again. The doorway is now blocked and you can’t escape, the anger has made it to your tummy.

You haven’t said anything, you haven’t lashed out, but for the love of god just let me go to my quiet space. Then you hear it, the annoying cousin making a scene: “Mooooom, why wont he give Aunty Mary a hug?” as he looks in your direction, the conversations begin to quieten, and although my parents know that this isn’t something I want to do, they don’t want to be rude.

I am two steps away from making it to the doorway. Another relation is whispering “I was only waiting for him to kick off sure” while rolling their eyes. Mom is doing her nervous shuffle from one leg to the other and Dad barks: “Give Aunty Mary a hug”.

Bodhi meets Santa.
Bodhi meets Santa.

Why don’t they get that I just don’t want people in my space if its not invited? The rage is in my chest.

Mom is now telling dad, “Ah Martin, leave it”. I am one step away from the doorway to getting out of here. I know an argument is going to start, I now feel sad, angry and hungry. Why do they all have to come over anyway, no-one told me this was happening, if they had shown me pictures of who was invited or written down a schedule of what was going to happen, I would have known what to expect and could have prepared myself.

My dad’s stern voice can be heard, “No, no, he can’t just do what he wants all the time” and then I hear it, the wail coming from my mouth, the sound of being misunderstood. I want to give Aunty Mary a kick, my cousin a slap of a slice of pizza, and hand my dad my broken insides so he can see how this makes me feel, but I just kick the door instead.

Just because I can’t speak, doesn’t mean I can’t hear, and certainly doesn’t mean I don’t have feelings.

I am now being ran out of the room and told to behave and I don’t understand as I haven’t done anything wrong.

I go to my quiet space and feel safe, the noise, the people, the smells, the demands all begin to fade one by one.

Imagine, if you will, getting up and a crowd of people you may recognise but don’t see everyday have taken over your kitchen, are sprawled out on your couch, have taken over the TV so the thing you had looked forward to watching, you now can’t. They have drunk the last drop of milk, worn all your clean clothes you had ready, the bin is overflowing, someone is walking around your bedroom having a nose, they left the loo roll empty and put the empty boxes and wrappers back in the cupboard. There is no escaping them. Are you a little bit put out? This is similar to how an autistic child can feel when people invade their space or home with no warning.

Now, imagine that this happens every day over the course of two weeks, this coupled with the fact that the TV schedule has changed, there is no school, no routine, food is different, they may have new clothes to put on, have to listen to loud new toys in the house, don’t understand why you have to wait to open a present, or why something is wrapped when, on your birthday when you get gifts, it isn’t; why do people go on and on about Santa when he’s not coming for another 24 days,? Why are my family in my school to see me? This is my place, home is their place, what is that smell in the kitchen?

Lack of understanding and preparation leads to chaos, which has a domino effect. Welcome to our Christmas, ladies and gentlemen.

So many expectations are put on parents, families and children. In a time of social media, we have become completely bogged down by other people’s standards and what we think we should be doing to enjoy Christmas.

When, in reality, we get stressed and low about not being able to continue or create traditions that we feel are meant to bring families together to make lasting memories.

Or we force the issue to please others at the cost of our own family’s best interests. Our children just can’t tolerate pantomimes, light displays, concerts, plays and crowds.

We would love to be included and not just have an ASD friendly hour at 10am on a Monday, at a time that reads a business is autism friendly for families but at an hour that clearly says it won’t effect the takings.

Matching pyjamas, Santa experience by train, the Toy Show, Christmas Eve boxes, perfectly posed Hallmark pictures, tins of sweets being out in October?

Our kids have different interests. Although we would love them to sometimes, they don’t have the same sentiment tied to Christmas.

You can imagine how important it is for us that we have staff and teachers who create social stories and schedules and prepare our children for these things that others take in their stride.

This is the difference between us all being able to enjoy that slice of cheese pizza, or being hauled out, misunderstood.

Follow ‘Out in the Sticks with Six’ on Facebook and Instagram to see Lenore’s journey.


UPCOMING FUNDRAISER

Lenore is climbing Kilimanjaro next September, 2020, in aid of Sonas Junior School, Shine Centre for Autism and also Irish Guide Dogs for the Blind.

If you would like to make a donation, see https://www.ifundraise.ie/4888_20kforkilimanj.html to find out how your workplace or school can get involved.

You can catch up on Lenore’s other features on EchoLive.ie

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