The life of a sibling with autism

Jennifer Durward,

APRN, PMHNP-BC

Northern Montana Medical Group-Specialty Medical Center

When I chose to write this piece, I reflected upon my own childhood of having an older sibling with disabilities. Even though, she didn’t have autism, her disabilities influenced me as a sister, a daughter, as a mother, and today as a practitioner. We often read information on the perspective of the parent, the person with the disability, but not so much about the perspective of the sibling.

At this very moment, I am sitting on my couch typing this article, I see my son jotting down his research of who he thinks would be the greatest French actor from 1922 to current to play the doctor for Dr. Who for each year. This is his daily norm. Researching on his phone deciding who would be the best actor from various countries. He has certain criteria for them to be candidates. Across the way, his little sister does her own research; as a preteen, watching music and videos on Instagram. So much alike, but so different.

There is a common theme of having a sibling that is “different.” The struggle is real. Often you grow up faster because you are the protector, interpreter and motivator. You witness the looks and hear the whispers of judgmental people and often feel the confusion of how people can be so cruel. Growing up you feel the need of responsibility. “I know someday I will have to take care of my brother. It is OK mom”- L. Durward. I remember that moment, too, when I was about her age, the reality that there is an underlying responsibility as a sibling to help watch over or even care for them when they are adults.

The sibling often becomes the interpreter. You explain to others the needs of your sibling when they are having a hard time expressing their frustrations of even basic needs. The “quirky” behavior of your sibling, at first, is embarrassing, but then they grow on you and you learn to love those behaviors because this is what makes them who they are. There are moments the special needs sibling gets more attention and the other siblings get pushed to the side. It may look like favoritism, but it is not. We take for granted the simple gifts in life. Getting asked to play, to share a cookie or even being acknowledged in a hallway. These all seem like everyday run of the mill situations. But to a person with autism or a special needs person, these simple acts of humanity sometimes don’t occur. The sibling will often fill these gaps that society is scared to participate in. You become less concerned of being left out and more aware of how you enhance the life of your sibling.

“Disabilities bring you back to the rare basics where being kind, helpful, patient and loving are the most important attributes” (Autism Speaks Inc., 2017).

As the normal course of growth and development continues, there is a period when the benchmarks are equal. Before long, you start to surpass your sibling and you find yourself correcting behaviors, encouraging to ride a bike, and motivating him or her to try new things. I will never forget the day when my two children at the exact same time took off on their bikes and learned to ride without training wheels (keeping in mind they are 3 years apart).

The voice of the sibling doesn’t go unnoticed. The roles that are embraced, are not a curse, but a blessing. You learn to celebrate the little achievements and become humbled by the position you were born into. The struggles that come just being “normal” become less consuming with having a sibling that is special needs. You realize no one is “normal.” We all have deficits and strengths that we each can learn from. We serve a purpose that is beyond our understanding. “What you gain are irreplaceable life experiences that turn you into a strong, independent, and caring adult who knows the true meaning of love, hard work, acceptance, patience and family” (Autism Speaks Inc., 2017)

Please join me on April 22 along with many others, to unite in Autism Awareness. This year’s theme is “Super Hero.” Please see in last paragraph details of the event.

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Reference: Autism Speaks Inc. (2017). A Letter on “What It’s Like to Have a Sibling with Autism.” Retrieved from https://www.autismspeaks.org/blog/2014/10/10/letter-what-it%e2%80%99s-have-sibling-autism.

Quality Life Concept’s Second Annual Autism Awareness event, a 1-mile and a 5k walk, run or stroller roll, has registration at 8:45 a.m. Saturday, April 22, with the events starting at 9:30 a.m. at District 4 HRDC Building at 2229 5th Ave. in Havre.