Even after the amount of times I've been asked this question, I still find it a hard one to answer. I don't know what a world without autism is like.
Jake is on the severe end of the spectrum -- he has complex needs and is non-verbal, brilliant in some areas, infantile in others. Being only four years his senior, when we were young, Jake used to push me around. I would tell my mom, "I can't wait until Jake is older and understands, and I can tell him off for all the naughty things he has done." Eventually, I realized this day would never come. It's not uncommon for siblings to not-remember the diagnosis stage -- at some point, I just knew that Jake was autistic.
Over the years, the way I talk and think about Jake has changed. Siblings can sometimes feel like the forgotten carer and so I was recently asked by Ambitious About Autism for tips and tricks for siblings growing up with someone with autism. Here are my top picks:
Be open and honest
It occurred to me in my mid- to late-teens that one day, my parents would die. I don't know why it took me so long to figure this out, but I do know that worrying about the inevitable is not unique to me. What I was more specifically worried about was what would happen to Jake... where would he go? What would he do? What would I do? I was very lucky that my mom had pre-empted the topic and was very open and honest about it with me, explaining the different options and to never be worried -- we would figure it out. It feels like an unapproachable topic, but it's not; there's a very good chance your parents have thought about this, too and that there will be options for you all.
You're all in this together
When a meltdown is happening, it is tempting to ask your parents why and sometimes, they just don't have the answer -- for the same reasons that you don't. Even though they are the parents and you are the child, it's important to remember that you're all learning autism together. It can sometimes feel like you're making it up as you go along but that's just how you learn what works and what doesn't. They're trying their hardest. Hang in there.
Your sibling is going through this, too
My dad once explained that for Jake, sitting at the dinner table with us all was like one of us sitting with a group of people all speaking another language. It occurred to me then that Jake probably had more to handle than I did. It's easy to forget, but Jake makes more sacrifices every day in his behavior for reasons he doesn't understand.
You will meet the best people through autism networks, events and social gatherings both in real life and online. I have made friends and have experienced and learned things that I wouldn't have done otherwise. Seeing Jake in environments other than home helped me to understand him better, too. Meeting and speaking to others who are on the spectrum or care for those who are can laugh along with the things that no one else understands, which is so important.
Let them stare
Like many people with autism, Jake sometimes stims. Hand flapping, body rocking, noise repetition... he dabbles in all of it. It calms him down and makes him happy, but people still stare. I imagine that these are the same people who stare down crying babies on airplanes, as if that is going to stop them crying. It took a long time to come to having this attitude but honestly... let them stare. It's their ignorance, not yours. They might learn something.
The challenges of autism are real, but so are the joys. Happy World Autism Awareness Day to those who know that really, every day is autism awareness day.
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