Inclusion is more than just a word


Isla playing the teacher

We all need to play a part to make inclusion work as is more than just a word – it requires teaching of our children about autism and how to interact with kids who are wired a bit differently.I have seen a few people posting the following on their Facebook timelines. I am encouraged, with April being Autism Awareness

I have seen a few people posting the following on their Facebook timelines. I am encouraged, with April being Autism Awareness month, that people are helping raise awareness and speak up for our kiddies with autism.

In the light of recent events on the exclusion of an autistic child from participating in a school trip, I feel the need to write this.

There are boys and girls that nobody invites to birthdays for example. There are special kids who want to belong to a team but don’t get selected because it is more important to win than include these children. 

Children with special needs are not rare or strange, they only want what everyone else wants: to be accepted !!

Can I ask a question? Is there anyone willing to copy and paste this post to their wall without sharing it, like I did for a friend? 

However, for Isla and a lot of children with autism, it’s not just as simple as sending a birthday invitation or including a child in a sports team. We also have to educate our Neuro Typical (NT) children about autism to make inclusion successful in my opinion.

In our case, for example, Isla would not understand what it actually means to be invited to a birthday party nor would she care. She could not handle the cake not being the way she wants it (has to be chocolate) even if pre warned. If she didn’t win a party game such as pass the parcel it would set off a full scale (loud) crying episode which would take her a long time to recover from. Again just explaining doesn’t always work with her and to be honest is just embarrassing! It would be too loud and over stimulating for her and she would just want to go home.

It used to be me (not her) who used to get upset she would never get those invites. It was part of that adjustment period when her childhood wasn’t one that I had planned on. Now I wouldn’t take her anyway as she would be too disruptive and is just not enjoyable for her and not fair on the child who was having the birthday.

Isla is the centre of her own world. She is a caring, helpful friend on her own terms but just does not understand social complexities and wouldn’t know she was being left out or bullied. Her only concern, when other people are involved, is not having anybody to play with her (with what she wants to play) or if she has no one who can “join in” with her on Minecraft.

Including Isla in a NT sports team, I don’t believe is the answer either. Maybe this would work for a higher functioning child who understands rules and social skills and the need to work as a team. For Isla, this would not make her feel able and competent at all and she would either lose interest quickly or a tantrum would ensue.

I am all about inclusion but it is just not as easy as just using the word.  Expecting children with ASD to be thrown into a NT environment and being able to cope will not work. We need to educate and let NT children know what to expect and teach them how to interact with kids who are a bit different especially if they are not familiar with the child.

One way to do this is explaining why children with ASD act like they do. It is difficult as each child with the same diagnosis is different but they mostly share the same traits.

Most kids on the spectrum have :

Rigid thinking 

This means that they may find it difficult to consider alternatives or to accept when things are not as they expected or in Isla’s case even when expected such as there not being chocolate cake at a birthday or chocolate icecream at a restaurant.

It can be difficult for them to think ahead and to guess what is going to happen next, which means that they may become scared or confused in some situations.

They often like routine and are good at setting up and following routines.  This can keep them on task and sometimes is as simple as writing or drawing pictures of events on paper.

They may have fixed interests and may like to focus on detail.

Sensory sensitivities 

Whether it be loud noises, people in their space or busy environments, this can make kids meltdown, run away or act strangely.

The need to “stim” ie hand flap but in Isla’s case biting and “eeeing” to feel normal and express excitement.

Communicate differently 

It is hard to process a lot of things at once so they might not look at you while talking or can’t answer you when concentrating on something else.

May have trouble answering questions and recalling events or communicating it in a way that makes sense.

They won’t necessarily understand sarcasm so just say what you mean and keep it simple, ask short questions and allow them time to answer or just comment on what is happening.

They may talk differently with a different tone of voice.

Might not understand the social aspect of speech.  One example of this recently when Isla was looking at Thomas trains in Farmers, a boy came up and said “I love Thomas Trains”. Isla replied, “Welcome to Farmers”.

May not understand why you can’t say bad words. Isla recently realised that she got a great reaction to saying “What the F*%k”.  She knows she’s not allowed to say it but really struggles to understand why and how a word can be bad!

Instead of making autistic kids fit into a neurotypical world I think the key is to accept and embrace their differences.

Inclusion can take the form of kids cheering on others that are coming last in a race whether they have a disability or not. Saying hi to them in the playground. Showing an interest in one of their special interests. Asking them to join a game and adjusting the rules to suit them so they feel competent. This could just be as easy as kicking a ball back and forth.

Isla IS, in fact, rare (with her chromosome deletion being 1 in 5 million) and her behaviour IS strange to other kids but once they get to know her and can look past the tantrums and her having to have her own way and realise this is how she copes with the world, she is awesome in her own way.

Published by Sara Stythe

Hi my name is Sara Stythe and I am a mum of 3 beautiful girls. This is a place to share knowledge, resources and information I have learnt along the way on this unexpected journey with our unique youngest daughter. Isla is missing a tiny bit of her 2nd chromosome (2q23.1 Microdeletion Syndrome, recently known as MAND) causing autism, epilepsy and development delay. If you would like to receive my new blog posts by email you can subscribe. Thank you

4 thoughts on “Inclusion is more than just a word

  1. Lovely post Sara. I felt honoured and privileged to be with her when she was welcoming people into Farmers in Taupo – the staff thought she was a delight! Which of course is exactly what she is – delightfully different. Love Bob xxx

    Liked by 1 person

  2. This is incredibly thought provoking Sara as its so important for us to self reflect about what we consider inclusion to be and sometimes don’t stop and take the time to really think what inclusion is to each individual child. Our first big step to Inclusion is about awareness to what autism is and how varied it effects each child. Thank you for sharing.


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