1 in 59 are diagnosed with Autism Spectrum Disorder, according to The Centers for Disease Control. What that number doesn’t reflect are the countless others who are impacted – moms, dads, caregivers, aunts, uncles, and, a group that can easily be overlooked – siblings.
For brothers and sisters of those with autism who are old enough to understand, the diagnosis can be confusing; an age-appropriate explanation can be a challenge, not to mention all that follows. And regardless of whether a sibling learns of a brother or sister’s diagnosis years into his or her childhood or the diagnosis pre-dated that sibling’s birth, Autism will shape the story of every person who loves someone with this neurological disorder. Siblings may need to learn what “ABA” means years before they’re old enough for a psychology class – or they may need to understand sign language long before they’ve taken a foreign language course. They may need to get a training on how to reach out to first responders if their brothers or sisters elope – or understand how to manage a meltdown in a public place. In many cases, siblings of people with Autism take on greater responsibilities than their neurotypical peers. They also tend to be wise and compassionate – far beyond their years.
Siblings of children with autism learn that the ability to communicate is a gift – and that forging a connection with another human sometimes doesn’t require words at all. They learn that the opportunity to attend traditional school – or the prom – or to drive a car, is not something everyone gets to experience. They develop a spirit of gratitude because of this heightened awareness. And through their siblings, they learn that people with developmental disabilities have special strengths, talents, and qualities that will enrich life for every person in their path.
Moms and Dads of those siblings, of course, have a unique situation at hand as well. While “optimizing the quality of life” for their child with Autism (the mission statement of our son Joey’s full-time residential program, Anderson Center for Autism), they are keenly aware – every single day – that they also need to optimize the quality of life for their other children.
It’s not an easy path to navigate – and although we are years into this journey and are still very much “works in progress”, here are some tidbits that might be helpful to parents trying to figure it all out:
When they were very young, I invited my children’s friends over to the house frequently. I specifically tried to arrange playdates at my house so that I could expose Joey’s siblings’ friends to him early on. Not only did I feel this would help demystify the concept of Autism, but I felt it would help Joey’s siblings enjoy some “normal” socialization opportunities, and in turn, help those friends understand the importance of inclusion.
Because Joey’s needs were so great, I tried to make a point to spend time alone with his siblings. I tried to encourage them to let me or Dan know if they were feeling left out & needed some special time with us. This open line of communication allowed us to keep ourselves “in check” as we filled our days with appointments, therapy sessions, and phone calls for Joey. And I believe Joey’s siblings felt that they could open up to us when they most needed to do so.
I emphasized regularly that Autism would help all of us learn patience and empathy – that it was our collective learning opportunity, and a chance for each of us as individuals to take our story and use it to serve the common good. I believe that their compassion and sensitivity has made them kinder human beings.
I let them know that Joey was a great “gauge” for others. If their friends showed interest in Joey and took the time to give him a little attention or to get to know him, it showed character and open-mindedness. These were the kinds of friends they should try to surround themselves with – the kind of people they should always seek out throughout every stage of life.
I told my kids that their job as role models is very special and unique because their behavior could have a tremendous impact on Joey’s growth and development. Research has shown that children with autism learn the most from their siblings. Everything they model, everything they do and say, could have an extraordinary impact. I think that through their own experience with Joey, they’ve learned that every interaction in life counts.
When we took family vacations, I always chose destinations that catered to families like ours. This afforded time for Dan and I to be present for Jackie and Aidan while Joey was enjoying activities with specialized instructors. It was a win for everyone.
And when it came to residential placement, the most difficult decision we had ever faced, I explained to Jackie and Aidan why it was needed. I explained that one day their own families and friends will be able to spend quality time with Joey – real quality time – because Joey was happier in an atmosphere designed to maximize his potential. I also talked with them about the extended family they’d gain through Joey’s caregivers at Anderson Center for Autism. Today, they’ve learned that sometimes the most impossible choices can have the best outcomes if we take that leap of faith.
Today, not only is Anderson Center for Autism optimizing the quality of life for Joey, but as parents, I can honestly say we continue to do all we can to optimize quality of life for his siblings.
And ultimately, Jackie and Aidan will no doubt optimize the quality of life for everyone in their path, thanks to the lessons and the character they’ve developed as a result of being impacted by Autism.