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Siblings Perspective: The Forgotten Piece of the Autism Puzzle (February 2019)

Over the New Year, my husband, Tom and I were invited to join Street and his family on a trip to Singapore and Bali. When my husband and I have traveled with Street in the past, we found that as long as Street was doing what he wanted to do, the trip went well.  This trip was different… It wasn’t all about Street. We were with with Streets Mom, Dad, two brothers and another family of three.

I had somewhat of an awakening on this trip, as I began to see how Street’s Autism affected his siblings, particularly his older brother Joe.   Siblings of Autistic children seem to be forgotten, but certainly not on purpose. The point of this post is to encourage families to make sure the siblings of Autistic children are heard, listened to and helped if needed.  They have a lot of insight, as I discovered in Asia.

Here is what I observed during our trip:  

Street is the middle child, with his older brother, Joe, age 18, and his younger brother, Charlie, age 15.  For as long as I can remember, Joe had always made it his business to include Street in whatever was going on.  Big or small, Joe made sure Street was involved… sometimes, against Street’s wishes. It seemed on this trip, Street wanted to spend the entire vacation in his room, Facebook live-streaming the view from his bed.  Joe did not allow him to do that. Joe made sure he ate with us at every meal, swam in the pool/ocean with us and joined us on excursions into the Bali culture. Street always resisted, but on this trip, Joe won every battle!

It is no surprise that traveling with someone on the spectrum is not always easy.  Taking them out of their routine, surrounding them with constant stimulus and expecting them to participate in pre-planned activities is no small fleet. Nevertheless, Joe was persistent and insisted that Street be part of everything!

For Joe, Charlie, and many other children growing up with an Autistic sibling, it is a constant balance between wanting to make that sibling feel included, and harboring resentment, knowing how life could be if things were different.  It is easy for the siblings of someone on the spectrum to feel forgotten about or less important. Parent’s are spread thin with the balance of constant therapies, specialized treatments and doctors appointments, that it’s hard to maintain symmetry when caring for the rest of their loved ones.  During my time hosting a Mom’s Support Group at our agency, it was made very clear the guilt that Mom’s raising children with disabilities feel when reflecting on the impact it has on the rest of their family.

Being the sibling of someone on the spectrum is a hard and thankless job.  It is expected that the “typical” children will cater to and ultimately compromise their desires in order to satisfy those of their atypical sibling.  For some children, this is an easier compromise than others and I am thankful to say, Street’s brothers handle his disability with grace and patience.   Some days are harder than others, but in the end, Street knows his brothers love and would do anything for him.

In high school, Joe wrote a paper touching on life at home with Street.  The hardships, the triumphs, and his concern and empathy of how Street had brought very difficult times to his parents.  Eighteen year old Joe will now say that growing up with Street as his brother was one of the biggest lessons of his life, and he’s ultimately better for it.  He is patient and understanding, even keeled and encouraging. It is not always easy to love despite differences, but Joe is a reminder that it’s possible, and it’s worth it.