My Brother Has Autism. This is What It Feels Like To Be His Sister. By Lulu Mann, Age 9.
Introduction by Gena Mann
About a year ago we were coming home from a family vacation and while waiting in line for customs and immigration at the airport, my son, Jasper had a meltdown the likes of which we hadn't seen in a long time. He was overtired from traveling and he literally just could not take the long lines. My husband and I are accustomed to the nervous stomach we have traveling with Jasper and the fact that a day that seems to be progressing pretty smoothly can turn on a dime. I looked over at my then 8-year-old daughter and saw the look of horror on her face. When we arrived home, she told me she felt so embarrassed in the airport and hated the way people were looking at us. It was the first time she had ever expressed feeling embarrassed over her brother and I knew immediately that the tagline we had always taken, something along the lines of, "we are family and we support each other," was not addressing her needs and fears. I asked if she wanted to talk about it, but she didn't want to talk to me, or my husband, or her school counselor, or a private psychologist. But when I mentioned the idea of putting together a group of girls her age who all had brothers with autism and to have that group facilitated by a psychologist, she jumped at the idea. She was desperate to know she wasn't alone with these feelings and this group (they named it SIS-Sisters in Support) has been life changing for her. This is something she wrote based on a conversation with that group...
The Look By Lulu Mann
The look is something that all people like me see, all the time. The look is not pleasant, not at all. People with autism are...different. People with sensory issues are different. Everybody knows that. They are different. Not weird, not awkward, different. No one, not even me, could say they are normal, and that’s the truth, but we can’t look at them like they are weird, or awkward because that can hurt people, and I'm going to tell you why, and also the different types of looks.
One type of look that people do is the look that people make when they try to look sorry for you. This look hurts people because it makes people feel bad. This look is mostly towards the family, and often seen at an airport, a zoo, a beach, or other public places. People feel bad when they see this look because they feel like people are feeling sorry for them because they are a weird family when they are not. Their family is different, yes, but so is yours. But people don’t feel sorry for you because your family is different, do they? This is why you shouldn’t feel sorry for people with special needs family members.
Another type of look is where people look to see what’s happening, and then look away, thinking that they weren’t seen. The thing is, this look is very noticeable. People often make this look without realizing it, because it is kind of a reflex to look over if you hear a noise. You should definitely avoid making this look, even though it is hard because it is hurtful to people because they realize they are causing a commotion. This look is mostly found in public places with lots of people, such as the mall, the airport, or the grocery store.
Another type of look is the snobby look. When people make this look it’s showing that they think because someone has special needs, or is in a family with someone with special needs, that they are above them, and cooler. This look can be very hurtful because it can make people feel odd, and out of place compared to other people when really there is nothing odd about them, they are just different. According to my dad, people in families with special needs people are the chosen ones, and I think that really, there are benefits of being in a family with someone that has special needs because you get excuses, special treatments, and sometimes even lower prices! Take that snob!
Another type of look is the grossed out look. The people that make this look don’t think before they do things. They only think of themselves and making themselves look good. People make this look when they are close to someone with special needs, at somewhere like a playground, or a public pool. They usually move away when they do this look. This can make siblings of the person with special needs that are around their sister or brother feel like the person that made that look moved away because of them, and sometimes people (including me) feel like they’re weird too, just because their siblings are different.
This isn’t a look, but it’s something that can make people really sad. Sometimes you lose a friend because they think your sibling is weird, which makes them think you’re weird. This makes people unimaginably sad, and sometimes people misunderstand autism, and other special needs, thinking that because you're related to someone different, you are someone like that. People often make the look without knowing, so after reading this, you should remember not to do the look, to put yourself in someone else’s shoes, and to think before you do things. And always remember, people with special needs are not awkward. They're not weird, not gross, uncool. People with special needs are different.
Originally published on April 23, 2017