Having an Autistic Sister
By Louisa Briggs | Published on January 5, 2021 | 10 Minute Read
Hi, my name is Louisa and I’m 18. My younger sister Anna is 12 and she was diagnosed with autism a few months before her second birthday. I was 7 when she was diagnosed and I think I was too young to appreciate what this diagnosis would mean for Anna and her future, and also what it would mean for me. So far, having an autistic sister has been such an eye-opening experience and although it obviously comes with its own challenges, there are a lot of positives to share as well.
I don’t remember much from before Anna was born so growing up with an autistic sibling has always been the norm for me. Anna is non-verbal, and I really cannot imagine what it would be like to have a conversation with my sister. I talk to her all the time and I don’t get anything back from her. Everything she does say is echolalic, meaning it is repeated (usually from a TV programme) so it is unlikely Anna actually understands what she is saying - although we don’t actually know how much she is able to comprehend!
One of the hardest things I have found is not knowing how Anna is feeling or what she is thinking. Sometimes it is easy to tell when she’s distressed, and I do what I can to help her calm down, but I never know if I am doing the best thing to help her because she can’t tell me.
Because Anna is quite limited in what she is able to communicate, I have learned to appreciate every single little thing she does. People wouldn’t necessarily think twice about some of these things, such as making eye contact or looking at me when I say her name, because the majority of 12 year olds are able to do these things. It’s also very special when Anna chooses to sit near or next to me, because that might be the most interaction she will choose to have with me for a few days! Sometimes it is easier to focus on the fact Anna can’t talk to me, and I really do wish she could, but being happy about what she can do is so important in order to remain positive.
Another thing that being Anna’s sister has made me realise is that you never fully know what is going on inside someone’s head. I spend so much time wondering what Anna is thinking about, and I realised that even if she could talk, I wouldn’t constantly know what she is thinking anyway! This applies to everyone because people choose what they want to share and so many thoughts remain internal. Learning this was an important lesson for me because it helped me to accept I probably won’t ever know what Anna is thinking about!
Anna attends a special needs school and we have been so lucky that she’s received an amazing amount of support. Although academically she’s about 8 years behind where she should be, she absolutely benefits from being in school. Having a routine is important for most children with autism, and school gives Anna that routine. She also has music therapy which she adores and she seems so happy to do it. When we were at home during lockdown Anna would not engage with school work (because we couldn’t explain to her that we had to do school at home for a while, and doing school work at home is not normal for her at all) and the only thing she would engage with was music therapy! I did it everyday with her and I still do - seeing her smile is all I need for me to be happy and music will almost always put a smile on her face!
"Sometimes it is easier to focus on the fact Anna can’t talk to me, and I really do wish she could, but being happy about what she can do is so important in order to remain positive."
Going out in public with Anna is something I have always found quite difficult. She can get overwhelmed and distressed in busy, loud public places, especially if she doesn’t know where we are or what we are doing - so this can easily lead to meltdowns where she will kick or hit anyone that goes near her, and shout / stim really loudly. This usually attracts a lot of attention from strangers, we’ve even had people record us on their phones if Anna is really distressed and lashing out. When Anna does attract attention and people stare, I used to find it quite difficult and I would dread going out in public with her.
But as I’ve got older, I’ve learned that people stare because they don’t expect Anna to behave in the way that she does sometimes, and this is because autism is a hidden disability. We do get the occasional comment from strangers about how Anna is ‘just a naughty child’, and it took me a while but I’ve now got the confidence to explain to strangers that Anna has autism, and the reason behind her behaviour is purely because of her disability. But I still don’t think enough people have a good understanding of autism. The only way I can change this and have a positive impact on our society is to educate as many people as possible about the diversity of the autism spectrum. Also it is important to encourage everybody to be mindful that people can’t ‘look autistic’ so it can be damaging to assume that people like Anna behave in a certain way out of choice, when in reality it is a response to being overwhelmed and being in sensory overdrive.
I like to think that things happen for a reason - I never imagined that being a big sister would also mean becoming a young carer. Sometimes people assume that being a young carer means having to do a lot of housework and not being able to go out with friends etc. And sometimes I do have to help look after Anna and I do feel guilty if I go out because I can’t be there to help out with Anna. But being a young carer means more than this - for me, it means I’ve had to understand autism from a very young age, and accept that I can’t have a conversation with my sister like my friends can with their siblings. It also means finding strategies to cope with the anxiety that comes with Anna going into respite care, and learning to trust other people to look after her sometimes so me and my parents can have a break.
Although I think it’s important to show the reality of having a disabled sibling, there are so many positive things Anna has taught me, and she has absolutely shaped me into the person I am today and I will always be grateful for that!
About the Author
Hi, I’m Louisa and my sister Anna is profoundly autistic and I’ve recently found the confidence to share my experience of having a sibling with autism on Instagram @louisa.talks.