Autism From A Sibling’s Perspective

I have said many times on this blog that if you want to learn more about autism you should talk to an autistic person and ask them questions which is one thing I will always stand by as our voices are very important. However this doesn’t mean that gaining an insight into the disability through other people’s eyes isn’t needed – the more people talk about autistic people and their needs the better!

Because of this, I went to Twitter to ask if anyone who has an autistic sibling would be willing to share their experience so when Katie offered to help I was so relieved! I’ve followed Katie and her wonderful blog for a while now so I knew you would be in good hands with her.

A big thank you to Katie for taking the time to write this honest and insightful post about her brother Ryan and I hope you enjoy the read as much as I did!

autism sibling perspective

Hey guys! I’m Katie from Katie Middleton and I blog about beauty and lifestyle. However, when I saw that Ali was looking for people to write about ASD or siblings with ASD, I couldn’t say no. Autism is very close to my heart as my brother has Autism. So I’m just going to give you a little insight on what it my experience was like growing up with a sibling who has autism. Everyone’s experiences are different so I am not saying that everyone will be the same as me or my family but this is what it was like for us! I hope this helps someone in some way – even if it’s not you personally but you know people going through a similar situation.

Ryan was diagnosed way back in 1997 just before his third birthday, three days before to be exact. Growing up on the ASD spectrum I can only imagine the difficulties and frustration they feel. Watching my brother grow up, I would see him get angry on a regular basis because he couldn’t communicate with us and we couldn’t always understand him. We learned to make ways of communicating with him and it worked mostly.

When he was younger, there wasn’t really much help available so to speak. My parents were largely left to their own devices to manage Ryan. He had his specialist doctor who kept him on his files for as long as he could but apart from that he’s not had much help. He had no/little speech until he was about 5/6 years old and and randomly sang Robbie Williams in the car. He hasn’t shut up since!

Anyway, moving on! When I was younger I would get incredibly jealous of Ryan – I felt like he did it all on purpose to get my parents attention. I would then compete for attention. I was a bit of a brat, not gonna lie. But I was young and I didn’t understand why Ryan needed “more attention” than me, so to speak. I just thought he was doing it on purpose.

Ryan would get all the Thomas the Tank Engine Merchandise he wanted because that’s what he was fixated on. Ryan would get all the Thomas the Tank Engine shaped food because that’s the only way he would eat it. He would get everything he needed and more and I would get so jealous of him. Like I said, I didn’t understand. I felt like they were prioritising Ryan over me. Even though Ryan just needed that little bit more of time, effort and attention.

My parents didn’t do this intentionally to be cruel or malicious. They didn’t do it because they preferred Ryan over me (although I now do question this daily…) They did it because they had too. I would kick up a fuss just to get their attention, I would play up and show off because I so desperately wanted the attention. Looking back, I don’t know why I did some of the things I did because I got plenty of love and attention from my parents. You guys know how children’s minds can work sometimes!

It definitely put a strain on my parent’s relationship but they came out stronger on the other side. Sure, they probably argued, they probably had times where they were at the end of their tethers with it all. They still pulled through. Hats off to them for managing so well. Raising a child with Autism mostly without any help can be incredibly difficult.

autism sibling perspective

Looking back, I don’t resent anything my parents did as a result of Ryan’s Autism. If you asked me all this when I was say, 8 or 9 I would’ve been like: “Yep. Ryan is an attention seeker. He wants them all to himself. That’s fine, I’ll try to unsuccessfully run away again.” Stupid and horrible of me I know but this was how my mind worked when I was younger.

If I said being a sibling to someone who has Autism was a walk in the park, I’d be lying. There’s so many different aspects to consider when you live with someone who has Autism. It impacts your life just as much. You have to take their lifestyle into account too, you can’t really do your own thing as such (I found anyway) we had routines, times, set rules in place to make sure everything ran as smooth as possible.

When we went to Florida we would have to plan out our day’s months in advance, what rides we would do in what order, what time we would eat, where we would eat. Practically everything! He got so much better though the more we went to Florida. He really let his inner self out and it was so lovely to see. His arms would be flapping, he would be jumping up and down constantly and doing his infamous chin nuzzle on our shoulders to express his excitement. But it was worth it and worth the stares just to see him so happy! (Although I certainly had some choicely words for the starers).

There’s only a 15 month age gap between Ryan and I too so my parents couldn’t even explain it all to me properly, simply because I just wouldn’t understand. I do think the small age gap between us has helped in a way, we were in the same schools for some time (until Ryan went to a school that is specifically for people with disabilities) and I was extremely protective of him. If anyone ever upset my brother, whether it be online or at school – I was there like a Rottweiler shouting at them and defending him. No one got away with being a douchebag to my brother. Event now, despite him being 21 – anyone upsets him I’m straight in there. Maybe that’s not the best approach to take but no way in hell am I going to let small minded people hurt my brother the way they have done over the years.

autism sibling perspective

He’s come such a long way in the past 9-10 years and it makes me so proud of what he’s achieved. He put himself back into mainstream college, got A Levels coming out his ears, he has a job, a girlfriend that loves and understands him, he’s got a nice little group of friends – some of them also on the ASD spectrum. He goes to the pubs and everything now! His progress is honestly amazing. I think we have a much better relationship now we’re older. Sure, our relationship was great when we were little (despite my high levels of jealousy) but now it’s something else.

Anyway, this post wasn’t intended to be a woe is me post. I hope this can help a parent or someone with an Autistic sibling. Sure, my brother grates on me and we argue now and then – what brother/sister relationship doesn’t? But I wouldn’t change him for the world and I am so incredibly proud of everything he has achieved so far. How I acted as a child was not how I acted and believed in my teens and now. I think one day realisation just hit me, that everything my parents did – they didn’t do it because they hated me or preferred Ryan. They did it because they had to give him the extra support he needed in life.

I hope you enjoyed this read! I’m more than happy to answer any questions people may have – feel free to get in touch via my email or head over to my Twitter! Thanks again.

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  1. / 4:00 PM

    I feel like I could have written this post myself. I didn't receive my autism diagnosis until I was 17, so I was considered a young carer for a lot of my childhood. I did look after my younger siblings a lot, and I didn't much understand why he received more care than a lot of us. Even now I have my diagnosis, we have so many different autistic traits that living together can be difficult at times–and I know he feels the same way about me! Me and my brother are also 15 months apart (and one day;)), but that pulled us away rather than dragged us closer in our case, unfortunately. 🙂

  2. / 4:31 PM

    Such a well written post and the feeling of resentment and jealousy seem to be a common theme. So difficult for the siblings.

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