In a world in which siblings are typically our first playmates and our best friends, siblings of special-needs children are destined for a different childhood from what most kids experience. During their toddler years, I remember watching my neurotypical daughter, Kendall, attempt to initiate playtime with her older brother, Skyler, who has severe autism.  It often frustrated and saddened me that all of her attempts to include him or even be noticed by him were disregarded.  Although it can be extremely challenging to explain to your neurotypical child that ASD is the barrier between their sibling wanting to interact and the ability to do so, it’s important to nurture their relationship and attempt those conversations frequently and with more detail as they age.

As much as I try to put myself in Kendall’s shoes, I still struggle to fully comprehend what it must be like having a sibling you cannot communicate with, play with or relate to in any way. I imagine it must be confusing and sad to never know where she fits in his world — to not know what Skyler thinks of her or feels for her, and to wonder about whether the role she was born into as unofficial sibling caregiver is a responsibility she can handle as time goes by. Kendall and Skyler unconsciously switched roles many years ago, with the younger sister assuming the role of teacher and caregiver for her “older little brother.”

 

The Importance of Open Conversation

Over the years, I have found that honest and frequent communication with my daughter has resulted in better understanding, acceptance and patience with her brother’s challenges as he has attempted to engage with her.  By nature, children tend to be very accepting when recognizing the differences in others and certainly don’t see those differences as a hindrance to interacting with them.  As parents, it’s essential that we demonstrate what true inclusion looks like by treating our kids as equals – never underestimating the abilities of our special-needs children.

Like most siblings, the relationship between Skyler and Kendall frequently goes through cycles of love for each other followed by despising one another the very next week. As the kids get older, we find ourselves a household with two teenagers who look similar in age but whose behaviors and needs couldn’t be further apart. Kendall lives like a teenager and Skyler still behaves like a little boy. Some days, it’s difficult for us all to observe and process. So, I try to focus on the silver linings. For us, there will be no complaining from Kendall about having to share a bathroom with a sibling who takes excessively long showers. There will be no fights over who has priority over taking the car. There will be no arguments in the morning to hurry up or they’ll be late for school. There will be no negotiations about trading chores.

As Kendall grows up and ages into new experiences, I again revisit the worries I had when the kids were little. I regularly ask myself questions about what she may be thinking or feeling.  Has the fact that she doesn’t have a typical older sibling to pave the way for her left her feeling lonely but not alone? Does it sadden her that she will never get the “big brother guidance,” dating advice or social benefits that come from having a sibling two years ahead of you in school? I remember taking her to freshman orientation for high school and I couldn’t help but feel a bit sad that Skyler wasn’t able to prepare her for all things high school: offering insider information about the best teachers to get, giving her a tour of the school, or providing her with the feeling of protection that comes with having a big brother who is an upper-classman.

As of late, deeper conversations have arisen between Kendall and me about her memories of childhood and how she truly feels having a sibling on the severe end of the autism spectrum. She claims that she doesn’t spend much time pondering over the subject and she often dismisses my attempts at uncovering any resentment or her true feelings. She always reassures me that it doesn’t bother her having a sibling with autism. She insists she’s never felt disregarded or like she received less attention growing up, which is comforting to hear.  I am well aware that the time and focus Skyler requires daily with basic life skills has to be hurtful to Kendall, which is quite understandable. While it’s no one’s fault, she is often second in line for our attention.  Carving out specific, one on one quality time with each neurotypical child in your family is of paramount importance and I’ve worked hard to establish those bonding moments with her.

Therapy Can Help Neurotypical Siblings Share Their Feelings

Without a doubt, one of the best decisions I’ve made on Kendall’s behalf was suggesting she meet with a therapist.  Although I’ve encouraged her to share her fears and concerns about autism with me, I think she was worried that her questions or feedback may hurt my feelings.  It took roughly two years of therapy for her to open up and share honest feedback about what living with autism is truly like from her perspective, but she now feels much lighter after doing so.  From an early age, she has been hyper-focused on being perfect. All of that self-inflicted pressure has resulted in devastating levels of stress and a clinical diagnosis of anxiety and depression. It’s clear that Kendall is compensating for her brother’s disability and it’s an unbelievable burden to carry. She assumes that as long as she keeps straight A’s in school, keeps her room tidy and essentially remains a “perfect” child, we won’t have additional burdens on our plate worrying about both her and Skyler. I can only imagine how difficult it would be to manage the guilt of being “normal” and the frustration about the many sacrifices you have had to endure because of your special-needs sibling.

My most sincere wish is that Kendall recognizes that by being an autism sibling, she’s been provided a different set of tools in her toolbox to tackle the unique challenges parenthood may bring her one day. She might be more patient, more understanding, more flexible, more spontaneous, more giving, more forgiving, more accepting and more loving … because of autism, not in spite of it.  I know that the unconditional love she has for her brother will last a lifetime.

*Published in the Dec 2020 Issue (113) of Autism Parenting Magazine