This guest post is by Bailey Gumm a 19 year old sophomore at Westminster College in Salt Lake City, Utah. Originally from Nevada, Bailey is a board member of the Autism Coalition of Nevada where she facilitates their social media agenda, assists with special events and helps with fundraising. Bailey competes in the Miss America Organization with the platform of ‘Autism through a Different Lens’ which was inspired by her brother who was diagnosed with autism at 22 months old.
I’ve never doubted my brother’s success. My younger brother Alex dances in our hometown studio; he’s addicted to his cell phone just like any other 18-year-old; he’s going to college next year. But, Alex has autism, something he has and will continue to adapt to, but he will never outgrow. He sees life through a different lens. Throughout the years, I have seen the effects of autism directly on children and their families through my own lens- through a sister’s eyes.
As a sister there are times I have felt helpless watching my brother struggle to develop everyday social and communication skills and meaningful relationships, and I know I am not alone in this. With 1 in 68 children being diagnosed with autism I know there are a lot more siblings out there who are facing the same problems I did.
It wasn’t until I realized I have a powerful role as a sister - a protective, honest, and bossy one at that - that I found my voice as an advocate. All siblings are advocates.
However, we siblings go through their own set of problems. Feeling of neglect, embarrassment, loneliness, anger and resentment are far too common. To help siblings overcome these feelings and become a powerful tool in autism awareness we need to:
When we educate siblings, they are the ones to protect, speak out and be the key to a judgment-free life for those with autism or any other disability. What I found most helped me and other siblings was being provided basic knowledge of our brother or sister’s disorder. This understanding gives siblings the tools to increase their acceptance of autism and it allows siblings to empathize more with their brother or sister.
This is the book that helped me when my brother was diagnosed and I recommend it to everyone as a learning tool, Autism through a Sister’s Eyes by Emily Hecht.
2. Share stories
Often siblings go to the same school as their brother or sister who is on the spectrum, and they are embarrassed by how their classmates, school peers and even friends view their brother or sister. In these situations we need siblings to share personal stories about how their brother or sister is just a person and autism does not define who they are. I share stories about how my brother is a competitive dancer and hangs out with me. It is when I share those stories that others see Alex for Alex and not his disability.
3. Take charge of our role
Remind siblings that they are special and in a unique position of influence because whether they know it or not they are their siblings best advocate. This sounds so simple, but it will make the world of difference. Siblings need to be encouraged to use their role as a positive thing. Being the sibling of a child with special needs is one of the most remarkable and rewarding roles anyone could ask for.
The fact that Alex has autism does not define our relationship because we have an understanding. He knows he sees life through a different lens, and I’m just here to understand his view even when no one else does.
Alex, you are my daily motivation and inspiration. I have complete faith in your ability to achieve your dreams. Nothing has ever stopped you. Even though I yell at you sometimes and boss you around (I am your older sister, so that is expected) I love you with all my heart.
I live with a blessing and hope for a cure because of my brother. However, the reality exists that autism is not being cured anytime soon. So, as a sister, I am given a powerful role combined with education about autism and personal experience that allows me to be an anchor in the movement of autism awareness. Siblings, please join me in advocacy! We know our brothers and sisters as people, not as a statistic or another child on the autism spectrum. We are their voice in a world that doesn’t always hear them.
Click here to download Autism Speaks Sibling Support Tool Kit. This tool kit is for children who have a brother or sister diagnosed with autism. Though the guide has been designed for children ages 6-12, the information can be adapted as needed to other age and education levels. The guide is written in an interactive format so parents and siblings can set aside some quiet time to read the guide together. The intention is to create an opportunity for siblings to focus on their feelings, reactions to their sibling’s diagnosis and get information about autism.