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 this post!! I’m autistic and literally one of the reasons I want to become an author is so that I can give people own-voices autistic rep! We’re often so misunderstood and I personally really get uncomfortable when reading a neurotypical person write about it…I totally agree with the points you made here!!

    Liked by 2 people

  2. I just stumbled upon your blog and you definitely did not disappoint! this was such an epic and informative read, and i’m in love with the aesthetics of your blog, such a great post~

    Liked by 1 person

  3. I’m so late but this is such an amazing post Rania! We absolutely need more #ownvoices neurodivergent rep in YA and we also need more people to spread awareness about the stereotypes that many authors (consciously or unconsciously) perpetuate — so thank you so much for doing that in this post!! 💖 I definitely need to work on seeking out and reading more books with good autism & Down syndrome rep, but two books with autistic MCs that are on my radar are Please Don’t Hug Me by Kay Kerr and Can You See Me? by Libby Scott (both recommended by Cait @ Paper Fury, who is on the spectrum).

    Again, amazing post Rania! 💗

    Liked by 1 person

  4. Hi! I just came across your blog, and this was a perfect post to start off my time here(that sounds weird lol) My younger sister has special needs, and I’ve definitely noticed that people either pity her, or totally don’t get it and expect her to act like any other kid. Of course that’s good in some situations but like at school, when she might have a little bit of a hard time they won’t give her the help she needs. It is definitely frustrating how people are so uneducated or think it’s something to be ashamed of. You did this post great! We definitely need more accurate representation in YA and all books.

    Liked by 1 person

  5. this is a lovely post Rania!! i fully agree that it should be normalised and discussed more in books which are available to people with down syndrome and autism! thanks for sharing this 💛💛

    Liked by 1 person

  6. rania! i love this post so much! thank you for addressing such an important topic! having good autism rep, and just disability rep in general in books is so important, because so many people relate to that!i definitely think we need more #ownvoices disability representation, because when people who have no experience write about the subject, it def does come off as being disabled is a bad thing, etc. when it really isn’t! i’m just so tired of autistic people, and disabled people being painted as the villain when they’re not, so thank you once again for this post! 💞💞

    Liked by 1 person

  7. Awesome discussion post, Rania! I read A Room Called Earth this year and really enjoyed it. The author is autistic and the book is about an autistic woman who is attending a party. We get a close look at her thoughts and feelings throughout the book and they clearly go against the stereotypes you mentioned in your post. Autism was never depicted as something shameful in this book and that’s the message that we should get from books with autism rep!

    Liked by 2 people

  8. Hi, Rania! Thank you so much for writing this post, I fully agree with everything in it.

    My younger brother has a duel diagnosis of autism and down syndrome, and my other younger brother has down syndrome. Both are adorable and amazing and so so sweet.

    A book that I read recently that had good autism representation was ‘What To Say Next, by Julie Buxbaum’. It didn’t do autism representation perfectly, but it was still an improvement from other books I’ve read. Besides, the main character is autistic and that was wonderful to see.

    Thanks for mentioning my post, that meant a lot to me <3.

    Liked by 2 people

    1. Hi Liesl! You’re very welcome! I’m so glad you liked it!! That’s amazing and both of them sound like wonderful human beings!!

      Ooh I’ve heard of that before but didn’t know it had autism representation! I’ll check it out soon!

      Of course! Your post was a big help! Thank you for reading!!

      Liked by 1 person

  9. Loved the post Rania, I agree that these are topics that should be more broadly discussed. As for books, I can only think of Act Your Age, Eve Brown (it’s not YA though). I cannot speak for the quality of the rep, but one of the main characters is autistic!

    Liked by 2 people

  10. What a great post, Rania. Thank you so much for writing this and sharing part of your life while bringing awareness. I have 2 cousins who are siblings to each other who are autistic and I’ve only read one book in the YA world that actually had an autism rep, and it was a side character like you mentioned. The rep was actually really good but I 100% agree that we need more books that show different representations so the stereotypes aren’t as prevalent. One of my cousins is higher functioning and was gifted in some areas in school but my other is a bit lower functioning and doesn’t fit that stereotype at all. People don’t really know how to speak to them when really all you need to do is treat them like anyone else and have more patience. Most of the time my cousins carry the conversation all on their own because they have so much to say and I love listening to them and their perspectives. 😊

    Liked by 3 people

    1. Thank you so much Wren! It was a delight sharing all of it with you all! Ah I would love to know the name of the book if you still remember it? That’s so true, all we need to do is talk to them normally. Awww I love that! Thank you for sharing this with me!!

      Liked by 1 person

      1. 💗💕 It’s an older contemporary YA, it’s called Megan Meade’s Guide to the McGowan Boys by Kate Brian. One of the brothers in the book has Asperger’s and I liked that the MC didn’t treat him differently or avoid him in the book as well as the good representation. 😊

        Liked by 1 person

  11. Thank you so much for writing this! You are so correct about needing more books, especially in mainstream book culture, to avoid stereotyping people with down syndrome and autism. I’ll be looking to add books with that representation to my TBR 🙂

    Liked by 4 people

  12. I absolutely loved this post! Thank you for addressing this and I agree with all your points! I appreciate you taking the time and discussing this topic because this is important to talk about not just YA but in everyday life!

    Liked by 2 people

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Google photo

You are commenting using your Google account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s