Let’s Talk About Down Syndrome and Autistic Representation in YA // a discussion

This post is going to be very different from my normal ones. I’ve spent so much time doing book reviews, tags, tours, and whatnot, that I haven’t had a chance to sit down and just write a proper discussion post. I’ve been wanting to do this post for months. March 21st was World Down Syndrome Day, and April was Autism Awareness Month. I could have easily posted this some time then, but I just couldn’t get myself to draft it. Maybe it was because I didn’t know what to talk about, or maybe I just didn’t want to.

I haven’t talked about this before, but I have a younger brother. He’s the most caring person I’ve ever met I love him more than anyone else in the world. Yes, we fight quite a bit, but which pair of siblings doesn’t? He has a tendency to be shy at first, but when you get to know him, his love knows no bounds.

You all probably already know where I’m going with this.

Firstly, what exactly is down syndrome and autism?

Down syndrome is when an extra chromosome is formed, so instead of two, you will find three (or part of a third) chromosomes in one of the pairs. It’s always been seen as something that can be fixed or cured, but it’s not. You just have to accept it and live with it, and that’s the harsh truth. Eventually, it becomes a normal part of your life like everything else. People with down syndrome are often not able to process or learn information at the same pace as everyone else, and can attend therapies of different types to help them improve their skills.

Autism is a difference in the way a child’s brain develops. Again, like down syndrome, it isn’t something that has a cure and you just need to accept it the way it is. Something I’ve observed over the years is that autism is represented and viewed in only one particular way. That autistic children don’t do well in school or can’t verbally express themselves. Where that might be true in some cases, it’s not for all. Autism is a spectrum, which means that everyone with autism is different. They will have different strengths and weaknesses along with different ways of communicating and responding.

I still remember the first time I learned about down syndrome and autism. I had to write a story for my second grade class teacher, and I had no idea what to write about. So I asked my mom. And she told me “Why don’t you write about a classmate who has down syndrome or autism?” and I was like “What’s that?” So my mom sat down with me and explained everything about the two, and after that conversation, I felt like a whole different person.

Now in the genre of young adult, there’s a scarcity in the number of books featuring characters with autism. I’ve seen books with side characters that are on the autistic spectrum, but I don’t think I’ve ever come across a main character like that. Down syndrome is even rarer. But in the books with such representation, it’s not delivered in the best way possible.

People have this mindset that allows them to believe autistic children are either not intelligent or complete nerds. That’s not always the case. They might not be the best in academics, but each child has a hobby he/she loves which they excel at. Another way we look at this (and this is way more common), is the exact opposite. That autistic children are complete nerds and excel at their studies. Yes, maybe that’s true for some, but people have started believing this so much that it’s now become a stereotype. Just because someone has autism does not mean that they’re prodigal.

There was a time when I used to take my brother to the park in the evenings (god that feels like ions ago), and I would have teenagers come up to me, point to my brother, and ask “Does he have down syndrome?” and I would say yes. It made me happy that someone had the courage to come and ask me about it and that people actually knew about it at all. But then they would just give me a pitiful smile and continue playing with their friends. It would sting at first, but then I realised that instead of getting frustrated by their pity, I could spread awareness.

A lot of families think that autism and down syndrome are something to be ashamed of. It’s really not. Let me make this very clear. Both of them are just things you need to live with. So what if it makes someone stand out? It’s completely normal. You need to be proud of it. It gives you a different perspective on life!

I heard a quote a few weeks ago. I don’t remember who said it but it was just so beautiful. It goes like this:

“Down syndrome is not a disability. It’s just a different ability.”

It’s a really small quote, but holds so much meaning. I often try to refrain from using the word ‘disability’ or ‘condition’ when talking about down syndrome or autism because even though those might be the terms used by doctors to explain them, it just makes it look like there’s something wrong with that individual which is not true. There’s nothing wrong with having down syndrome or being autistic, it just makes you a little different than the others.

Another thing I’ve come to understand in the past few years is that patience is key. As I mentioned earlier, children with down syndrome take time to process and learn things and might not always be on the same page as everyone. Children with autisms have stims, which refers to self-stimulating behaviors. This can be anything, from repetitive movements to eating up words. While some can be harmful if not dealt with properly, they are absolutely normal.

Some authors do a really good job of portraying these stims but after some time, more and more authors start writing autistic characters the same way and before you know it, that’s how the world sees autism. YA is a vast genre. But once something becomes a stereotype, it sticks. That’s what we need to change.

My brother has a really short attention span, and can’t sit in one place for a very long time. He might not be the best in academics, but you know what? That’s totally fine. Because every time his favourite song starts playing, he will not hesitate and will start belting out the lyrics. His words might not be very clear, but just looking at him having fun and dancing to the melody brings a smile to my face. Everyone around him loves and supports him and I think that’s the most valuable thing you can ever give someone.

Before I sign off, I wanted to share a blog post written by an autistic blogger, Liesl Robbins, on what she wished people knew about being autistic. It helped me a lot in the writing of this post, and I would love it if you could check her site out and give her a follow! She makes some really amazing content!

And that’s all for today! What did you think? Have you read any book with down syndrome and autism representation? Let me know in the comments!

43 thoughts on “Let’s Talk About Down Syndrome and Autistic Representation in YA // a discussion

  1. Thank you for sharing your stories and thoughts on this. I loved reading the post and though the only person I know off who is autistic is my cousin, I can’t say I know what it’s like personally simply because I haven’t lived with their family to relate on that level. What I can say for sure is how wholesome he is, truly he’s the sweetest boy you’ll ever meet and I wish people like you said would see him that way instead.

    Liked by 1 person

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