Monday, 16 July 2018

What I want YOUR children to know about MY children.


I was talking to a friend recently about explaining autism to children and it got me thinking - what do you tell children who want to more about autism? How do you explain what autism is?

As you are all aware, if you've been following my blog, autism is considered a hidden disability. You can't see how autism affects individuals and as such it can be incredibly difficult for others to understand what autism is. For children it can be even more difficult to understand what autism is when they can't physically see it.

We've been incredibly fortunate in that both O and L have friends who just accept them for who they are. They don't see the differences between themselves and my children, they just see O and L for who they are.

There are several brilliant books for children that explain autism in an easy to understand format but they are usually a generalisation about autism. And as you know, every individual with autism is different from the next.

So for those of you who want to know how to explain autism to your own children, here is what I would like YOUR children to know about MY children. And most of this is straight from O! This is what she would like YOUR children to know about her autism.


First up, you can't catch autism - you are born with it. No matter how much time you spend with an autistic person, you won't end up with autism. The reason for this is that autism is a neurological disorder that affects the brain and how it works.

Now because there are more people without autism than there are people with autism, sometimes people think that having autism means that there is something wrong. But this is not the case. Autism is a different way of thinking and feeling.

Put very simply, autism causes my children to think differently than you. Their brains are wired differently than your brain. In a brain there are pathways that the information you take in is stored and that the information travels along. In some parts of my children's brains, there are more pathways for the information to travel along and in other parts of their brains there are less pathways than your brain.

Autism causes O and L to see, hear and feel things much more intensely than their friends. Sounds and textures can be amplified to uncomfortable levels - imagine having thousands of ants crawling all over your body. That's how it can feel to O and L when their clothes feel itchy and scratchy. Imagine being in a football stadium with a capacity crowd closing in on you, that's how it can feel when they are in a shopping centre with people all around them.


When O and L start to run away from loud noises or busy places, they are doing it because they need to escape from the overwhelming sensation around them at that moment in time. At times, O and L may wear headphones over their ears. They're not wearing them because they want to stand out, they are wearing them so that they can concentrate on the task at hand. It may be to concentrate in class at school. It may be that they need to concentrate at a school assembly. The headphones simply block out the annoying background noise and they can still hear you through the headphones.

At times you might notice that O and L will flap their arms and hands or they will bounce on the spot or spin around. Some individuals may make different noises. This is called a stim or stimming. Stimming is their way of calming down or regulating their own emotions. It's a bit crazy but lots of movement actually helps them to calm down and to even concentrate! Everyone has a stim - you might tap your foot constantly when you're sitting at your school desk. You might fiddle with a pencil. O has a fabric band that goes around the front two legs of her school chair - she will bounce her feet on this in class to help her concentrate. L needs to do lots of running, jumping and climbing. Different people have different stims. L has a stim for when he is anxious or worried and a different stim for when he is excited. 

The more time that you spend with O or L or any other autistic individual, you may come to work out what their stims mean and YOU will be able to work out what emotion they are feeling at particular times. This can be useful as you'll be able to assist them before they enter into meltdown mode!

You might notice at times, that O and L enter into meltdown mode. Meltdown mode looks a little look them having a tantrum but it is the complete opposite of a tantrum. You might have a tantrum if things aren't going your way, and O and L also have tantrums. Usually you can stop a tantrum if you want to or if you get your own way. When you're having a tantrum you may have a conversation or make demands of your parents. When O and L enter into meltdown mode, they can't enter out of it whenever they like and they certainly can't have a conversation with anyone.


O and L will enter into meltdown mode for many reasons. It could be that they are overwhelmed by how busy a place is. It could be that the noise becomes too much for them to handle. It could be that something is out of place in their classroom, or that something has been changed in the classroom or in their daily routine. It could be that there is too much information going on for their brain to take in at that moment in time. It could be that teachers are giving them too much information or that they don't understand what has been asked of them so their brain becomes confused.

When O and L enter into meltdown mode, they are no longer in control of their body. Their brain takes over and shuts down the logical reasoning thinking part of their brain - the new brain. Their old brain, the cave man part of the brain, takes over and they want to run away or fight whatever their brain sees as a threat. It is called the flight, fight or freeze response and we all have this ability. 

When O and L are in meltdown mode, they may yell or scream or lash out at those around them, they may throw things or they may just sit and cry. They don't mean to lash out or to yell rudely at people, it is just the fight response taking over. When the meltdown has finished, neither O or L has any memory of what they just did.

But entering into meltdown mode doesn't excuse their behaviour. They still need to learn right from wrong and they are slowly learning what they can and can't do. They are learning what is acceptable and what is not.

What they DO need you to understand is that a meltdown is their brains way of saying "something is not right and I don't know how to tell you." They need you to be understanding - they're not entering into meltdown mode deliberately, it is a response to something going on around them. My role as their mum is to work out what is causing them to become distressed. Sometimes it is easy to figure out, sometimes it is very difficult to figure out.

What you can do is just be there for them - not too close but not too far away. Just be there so that they know that you are there for them. You could try talking to O and L calmly and tell them that everything will be okay. You could try asking O and L if they wanted to go to a quiet place in the classroom. They may not always respond but it may help them to calm down.


But know this - they will always be there for you. Once you become a friend of O and L, you have a friend for life. Both O and L find it difficult to make friends, so the fact that they call you a friend is a huge deal.

The thing is, sometimes when you say "hello" or "good morning" to them, they may not respond or say anything back. They're not doing this to be rude, it just doesn't occur to them that they should respond back. 

Social interactions, or friendships, are really tricky for both O and L to understand for many reasons. Some people say one thing but mean another. There are all the gestures and facial expressions that people use - these are all non-verbal cues. There are un-written rules in social interactions that they need to understand - like saying good morning to people. All of these and many more, make social interactions really tricky for anyone but when your brain thinks differently, it can be even tricker.

O and L just want you to be patient. They may take a little longer to respond to questions that you ask. If they don't want to talk to you straight away, give them a little time. They may not want to talk because their shoe feels uncomfortable or there is a new person in the classroom that they haven't seen before.

Individuals with autism generally like doing things in the same way all of the time. O tells me that if everything is the same then she knows exactly what is going to happen. When something changes, it causes O, L and many other individuals to become anxious. This is why they like to be told in advance as it helps them to prepare for the change.

You also might notice that O and L seem to be obsessed by particular topics. L loves anything and everything to do with superheroes. O loves anything to do with space - stars, moons, planets and everything in between. This is quite common with people who have been diagnosed with autism. They are called obsessions or special interests. Quite often an individual's special interest is what assists them to open up to new people.

The best thing to do if you want to more about autism, is ask. O can usually tell you why and how she thinks. L is still finding the words to explain his autism.

If it is another friend of yours that you want to know more about, ask them or their parents.

As a parent, I want everyone to understand autism. I want people to ask questions. When you ask questions, you find out the truth. With more understanding, there is more acceptance. I would take a bet that you just want to be accepted for who you are. O and L, and every other child and adult with autism, want the same thing. They want to be accepted for who they are, autism and all.

Autism doesn't mean that an individual is any less important or any more important than you, they're just different.

And the world needs different minds to make it a great place.


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I would love to hear your thoughts on my blog. I do read all the comments that are posted. Thanks so much for stopping by. Jen xx