By Carolina Bax, Regular ContributorNovember 22, 2015
image via icare4autism.org
1. BE OPEN
Goodness knows how much energy and distress that simply being honest about my slightly wacky family would have saved me. I wish I could’ve simply explained why inviting somebody around the house for a last minute dinner, hosting parties without any preparation beforehand, inviting seven friends to do a science project in my room wasn’t really an option in my household: it disrupts plans, schedules, and brings lots of unknown faces into our home.
Though it should not be our place as siblings to open up completely and inform others, there should be a general agreement within a family as to what a preferred attitude to new people entering our lives is. I am a firm believer in openness, in education, in showing people that differences are not barriers. I now look back at 15 year old me and think that all I needed to do was simply be honest.
I have nothing to hide.
2. BE DEFIANT
As a rather outspoken child, I often said the wrong thing at the wrong time, resulting in embarrassing situations where I’d be glared at by whoever was unfortunate enough to be in my company. This has turned out to be the ultimate blessing as an adult. I refuse to let rude, judgemental people get in the way of my life by insulting my sibling or to get away with alarmingly unacceptable behavior. At a school play a few years ago, some women in the audience made a snarky comment about my sibling who was flapping on stage and gazing at a distant point on the ceiling - I snapped at them to place their eyes back on their own children- and I don’t regret it for a minute.
If your sibling is autistic, these things often go unobserved by them, as human interaction is not their forte, particularly if they are on the lower end of the spectrum. Thus it is up to you to glare, clarify, and when necessary, argue. It is an act of protection. It is liberating to force people to face up to their own lack of information rather than to dwell in anger. I believe standing up to this kind of situation can only lead to good: to inform those unaware, to let out frustration.
3. BE PATIENT
There will be times that hearing the same CD for the 36th time, painstakingly separating your sibling’s food so it doesn’t touch, or having to bear another bath-time which goes on for an hour because there is an exact number of rinsing showers to have before stepping out will become too much to handle; sometimes because of practical reasons (a car trip where my sibling forced us to keep our windows shut in a surreal heatwave comes to mind!) and other times simply because it’s one of a long sequence of behaviours. Patience starts to drift away, and you want nothing more than to snap and change the CD, drag your sibling out of the bath, or mash up their entire dinner.
No human being is void of quirks.
If someone lost their patience at me every time I refused to go and empty the bins because I’m scared of the dark, I’d have no one left willing to spend time with me. Your sibling is programmed to be an eclectic mixture of traits that are absolutely normal and part of a daily routine for them, and it is just not up to you to decide when these can stop or not. Let them just be. A great gift one gains from having an autistic sibling is the gift of enhanced empathy and heightened care. You should learn to love them because of their quirks, not in spite of them. My family and I sometimes join in my sibling’s chanting in public,
4. BE NONCHALANT
Stimming, echolalia, perservation. These are all household names for anyone who shares their home with a bit of autism thrown in. Things such as repetitive hand movements, comfort phrases, and so on are englobed in our family, but they can be seen as incredibly antisocial or even rude to others. Of course some habits cannot be displayed socially or need to be nipped in the bud (shouting rude words in public, for instance), but really, who is going to be harmed by my sibling rubbing his tummy over and over? Yes, exactly, nobody.
Let them stare all they like.
My family and I sometimes join in my sibling’s chanting in public or sing their favourite (read: only song they will accept to be played on the radio) song as loudly as possible for their maximum entertainment, just to prove how little we care about public opinion. The more the merrier, and it tends to shut people up. We ride the autism wave and embrace the new behaviours that are comforting to them, whatever people may whisper. It gets tiring having to explain, especially if you’re facing the same individuals. We’d rather have fun and so would my sibling. They’d much rather have family karaoke than endure one of us shouting at a stranger. You should try it.
5. BE THERE (OR: JUST BE)
I am extremely proud of my sibling for being such a spark of joy in our family.
He makes us laugh, he has given us a refreshing attitude to life, and he is an extremely affectionate sibling and child. Listen to your sibling, spend time with them, be thoughtful and understanding.
Part of your life needs to be reshaped a little around them - and that can be tough sometimes, but the world is already so confusing for your sibling as they are surrounded by people who reason differently to them on a regular basis - read up about autism and always try to switch perspectives. Being a sibling to an autistic child is an enriching experience to have, but you need to be understanding, flexible, patient... all things that come with love. All it really boils down to is: you won’t ever be loving too much.
Do you have an autistic family member or friend? What have you learned from them? Tell us below!
Carolina is an Angloitalian third year languages student at the University of Oxford. She normally lives in Florence, Italy, but is currently on her year abroad in Germany. She loves modern literature, Simon & Garfunkel, and artichokes. When not trying to mix up languages and chatting, Carolina can normally be found reading things on the weird side of Wikipedia. You can read her ramblings at allaboutcarolina.wordpress.com, and follow her at @carolinafbax on Twitter.
Every girl is a work in progress. If you need more help, click here.