SIBLING TIES BY PAIGE TALHELM
I just want people to see autism for how it truly is. It isn’t just this blue light that shines in the city every April. It isn’t just that one savant that can tell you what day of the week March 21 was in 1934.
As Autism Awareness month approached, I began to think about all of the things I wanted people to be aware of when it came to autism. Autism Awareness is not only important to me because of my brother, but it is important to the entire autism community. I love that cities “light it up blue” or that people show off their puzzle piece ribbons. But what is being said? What is being shared about autism? You might see some booths handing out pamphlets. However, are the majority of the people visiting those booths showing their support because they’re interested in learning more or because autism affects them in some sort of way? How many of those pamphlets actually get read instead of getting tossed in the trash?
I’ve worked my share of Autism Awareness events and usually, most of the other volunteers/supporters are siblings, parents, relatives, friends, teachers, therapists, etc. This is true for most things that need more awareness. Don’t get me wrong; it’s not that I don’t appreciate their support. But how are we spreading awareness if everyone that is ‘listening’ are people who are already connected to the autism community?
These people get it. They know what autism is all about. The question is, who are the people that need to know more about autism? The people who stare at my brother in the store or restaurant because he’s tossing items on the ground. The people who think autism is just another word for super smart. The people who shush us in church because my brother is echoing the sounds. The people who shake their heads when my mom shows up 15 minutes late because, as she was walking out the door, my brother had an accident and she had to bathe him and change his clothes. These are the people who need to be more aware of what Autism is all about, so instead of passing judgment, they instead try to understand. They try to help. Or at least just keep walking and don’t make us feel worse about a stressful situation. Can you imagine your child soaking his clothes in urine in the middle of Walmart – and while you’re trying to clean up the puddle on the floor and protect his dignity, you can feel the sting of the disapproving, unhelpful stares digging into your back?
Although the top facts about autism are important to know, does it really help those affected by autism in everyday life? Does knowing that 1 in 68 children are diagnosed with autism really stop strangers from being hurtful? Does it give them an ounce of knowledge of what it’s like to be non-verbal and unable to communicate a simple want or need? Do they understand what it’s like to be 18 and still need your mother to dress you because you don’t have the motor skills? Do they get that, because of autism, they might miss out on milestone moments like prom, graduation, getting married, having a job, living independently? Absolutely not.
When I think of awareness, I think of now. What is affecting my brother now? What is important to our family now? Like, for instance, if my brother is going to have an accident while we’re out of the house? Is he going to wet his bed three or nine times tonight? Do we have enough clean sets of sheets in the house to remake his bed that many times? Is he going to try to touch the boiling pot of water on the stove? If he gets upset, is he going to self-bite and create open wounds on his hands? Will he sit with us at dinner or will he shove his food in his mouth and go back upstairs in his room?
I don’t need people to see autism as a scary or terrible thing. I just want them to see it for how it truly is. It isn’t just this blue light that shines in the city every April. It isn’t just that one savant that can tell you what day of the week March 21 was in 1934. It isn’t just a bunch of people asking for money for research. It is my family. It’s something that everyone comes in contact with every day – at the store, at the restaurant, at the park, at school. BECAUSE 1 in 68 children are diagnosed with autism.
Just because people with autism may not show it in their looks, doesn’t mean it isn’t there. It doesn’t mean the difficulties for that child or his family are nonexistent. The parent or sibling may be smiling and not reacting to whatever behavior is going on. They may seem like they are handling it with ease, but you just may not be seeing the tragic loss they are feeling – that their child may never experience their first kiss. That their child may never speak a word. That their child may never experience what it’s like in a college dorm.
I want people to be aware of all that, as well as to not pass judgment on families affected by autism. Because we are doing the best we can in the only way we know how to. I want people to understand what our individual with autism is going to miss out on. Some of those may be special. Some of those things may seem so small that other may even take them for granted. •
Beyond “Autism Awareness”
Paige Talhelm, 23, lives in the Baltimore area and is pursuing her Master’s degree in Education of Autism & Pervasive Disorders at Johns Hopkins. She is currently a Director at PALS Programs, an advocate for The Next Step Programs, and leads a support group for siblings of individuals with disabilities. She has two younger brothers, Jack and Sammy, who has autism and is non-verbal and not toilet trained. He is the sole reason for Paige’s push to help individuals with special needs. She hopes to create a program for adults with Autism to help with job searches, continuing education, life skills, and increased independence. Read more at: www.sammyssister.weebly.com
