Chloe Schur's sister is on the autism spectrum and was diagnosed as a teenager. Learn how the diagnosis shaped their relationship and inspired Chloe's involvement in autism advocacy.
Tell us about yourself.
My name is Chloe Schur, I'm 19 years old and I live in a small town called Reigate in Surrey, United Kingdom. I finished studying A-levels in 2016 and I'm currently working as a 1-1 support assistant in a school. I'm involved with a sibling support group in Surrey and have my own Twitter page setup purely for autism sibling support as I have a sister with high functioning autism.
What has been your experience growing up with a sibling on the autism spectrum?
Now, my story is a little different because my sibling was not diagnosed until she was 15, compared to those usually diagnosed as toddlers. For me, growing up in this situation was honestly unbearable at times. There's about a 22 month age gap and when she was younger she would have major mood swings, she was unsociable, and defiant which lead to my parents taking her to be assessed for mental health issues as it was clear to us it wasn't just bad behaviour. However, this was unsuccessful and they were turned away. So they left it for a while because well maybe it was just a behavioural phase.
A few years on in her early teens (I was 15 or 16 at this point), her behaviour became worse and more uncontrollable so my parents tried these services again but this time they were told it was a family issue and that we should try a family therapy session. At this point, it started to effect me more and more because the meltdowns were constant throughout the morning, day and night and they could last hours. She was set off by anything, it was really unstable and could be anything from being asked to unload the dishwasher to tidying her bedroom.
For me personally, it was a hard situation to be in and for the most part, I didn't feel part of a family. I felt quite isolated as my parents were exhausted and tied up trying to figure out how to keep her calm and from melting down. I mean, at this point there was no logical explanation for this behaviour and it never happened at school, only at home. My parents were just as unaware as me. They had no clue what was causing this behaviour and no techniques worked to stop the behaviour.
Still with no diagnosis, it all got too much and my parents decided to split up the family which I understood because I could see that they just couldn't cope with the pressures and meltdowns. I lived with dad and my sister lived with my mum. We all researched and read up on what it could be and Autism came up along with a couple of other diagnosis. So within a couple of month, they got the money together to fund a private assessment because now they were sure it was not just behaviour. Within two months we had a diagnosis of Autism (high functioning), Developmental Coordination Disorder (DCD), and Dyspraxia.
FINALLY AN EXPLANATION!
It was a relief to know there was a reason behind it! Being diagnosed with a health issue or having someone in the family that has one isn't usually something you're happy about. But for us, for me, I was happy. I was glad there was finally something official so we could get support and try and mend the family. After a year living apart we came back together and all lived under one roof again and it all made sense.
Despite her limitations, she really is incredible. And although she can't handle simple tasks, she's one of the brightest people I know, especially compared to me!
Over time, as we learned how to work with her and changed little bits of our routine to suit her, her behaviour improved — and so did our relationship. Before the diagnosis, we didn't speak at times. We couldn't because I was too afraid she'd kick off; it was almost like I didn't have a sibling.
Being the closest person to her because she didn't have many friends, I needed to learn her triggers and understand her condition so I could best help her. Even though I found recovering and forgiving her for the years of difficulty incredibly hard, I had to remember – it wasn't her fault. This was one of the hardest things to believe, as there is/was very little information about autism and no one else had such a late diagnosis like we did.
Personally, for most of my life I had mixed emotions because I didn't understand why or how it was happening. It wasn't just with my family; it also affected my social life as I'd never have friends over in case of a meltdown.
On your Twitter account, you provide advice and support to individuals who have a sibling on the autism spectrum. What inspired you to take part in this autism advocacy?
I attended a siblings support group to try and give myself a better understanding of the condition and how I could help my sister. At the end of this session, the lady running it approached me and asked if I'd be interested in helping her run a couple of the sessions as I had a unique and different story because of the late diagnosis. I had been through a very tough time and my participation showed people that no matter how hard it gets, you can still come out stronger and for the better.
I set up the twitter account (@askchloeautism) to help siblings who are/have been in the same or a similar situation to mine. I went through with little support and it was very hard. But with my experiences, I feel that I can put it to good use and help others who need it. As I have learned first hand, being a sibling of autism is difficult.
What is the most challenging or eye-opening moment you have had as her sibling?
Each day was a different challenge, a different problem to overcome. But the most challenging part was the behaviour. It put such a strain on our relationship to the point where we didn't really have one — not only with my sister, but with my parents too. And it took a long time to repair.
Reading other people's stories and researching autism, I've seen that every autism story is different, some better and some worse than my own. But all siblings should have support because they could be silently suffering.
How do you imagine your relationship with your sister in the future?
Since the diagnosis, my sister and I have become a lot closer. The meltdowns are rare and I can actually talk to her and have conversations, which two years ago I never thought would happen (she's 17 now and we have had the diagnosis for two years). I still have to be cautious about what I say to her, the tone I use, and how to ask her to do things. But not to the extent that I used to. The autism will never go away; it's lifelong for my sister and for me. But with people becoming more aware of autism and her being more stable, it's improving all of our lives and emotions.
What advice do you have for other siblings of individuals with autism?
My best advice for siblings would be to talk. Get support and don't go through it alone. Even if it's just to a friend, a teacher or your parents because it'll help them immensely to understand how you are feeling.
If you feel like I did, like you want to be strong for your parents so you bottle it up and hope it goes away – talk to someone outside the family who can just listen. I had a teacher at school in sixth form who I shared everything with and they made time to listen to me because they understood. It helped so, so much to get it all out.
At points, I had lost all hope that my family life/sibling would ever get better. But we are all working hard to get there and it just goes to show that even when there is no feeling that it's ever going to get better, if you keep pushing and trying, eventually it does and then nothing can stop you. You've been through your experience and now you are on a good path where you'll stay.
If you have any questions or want any help/advice don't hesitate to email firstname.lastname@example.org and I'll do my best to help!