Part 6 in our series on Autism and Family Life
Parental love may be unconditional but sibling love? That’s not how I remember it when I was growing up with a sister and two brothers where we lived with a quid pro quo arrangement better known today as “What have you done for me lately?”. I’ll do your chores today if you don’t tell mom that I lost her favorite . . . Wait a minute. I’m pretty sure my mother subscribes to this blog so back to the topic at hand –siblings.
I recently read an article in the Washington Post written by the sibling of someone with autism. The author begins with one of her “bad stories” of life with her brother with autism and when asked to recall a good one, couldn’t come up with anything.
Nothing? Not a single good memory of one’s sibling? My first thought was “How very sad.” But remember, I am a parent of a child with autism not a sibling. My knee-jerk reaction doesn’t count. I recall all too well my son blurting out the injustice of having a sibling with autism when he declared, “It’s not fair! Carrie’s lucky, she gets to . . . “. My quick reply would be, “What about autism is fair? Is Carrie lucky she can’t talk or play with other kids?” Bad mama move, I know. I’d then take a deep breath and do what I should’ve done in the first place –validate his feelings about it. Perception is reality.
The author of the Post article calls out the lack of research (do you notice a theme here with the lack of research on the impact of autism on family members?) but does point us in the direction of Ryan Macks, a child psychologist at Cincinnati’s Children’s Hospital, who suggests the author’s sense of having lost her childhood to her sibling with autism is not the norm. He goes on to note that there is much variability in how siblings are affected and in what their outcome is, ranging from those feeling that they were burdened by their sibling –to those who seem not to be affected -to those feeling they benefitted from growing up with a sibling with autism.
Certainly not to dismiss the Washington Post author’s feelings, it is easy to see the issues that cause stress for siblings: confusion and embarrassment about their sibling’s behavior, disappointment about not having a sibling to play with, being the target of aggressive behavior, resentment over not having more attention and time from mom and dad, worry about the future and feeling responsible for future caregiving, feeling a need to not ask for much in order not to additionally stress parents who they often worry about.
Even when he was a youngster, my son was quick to offer assistance and support when he saw me struggling with his whirling dervish little sister. I remember once in the heyday of our intensive in-home ABA program, he insisted on doing a therapy session with her. We videotaped all sessions so he turned on the camera and went to work, going through the drills he had heard over and over with her tutors. “Carrie, look at me”, he’d say, “do this” and he’d clap his hands in an effort to have her imitate his action. We have plenty of video footage of their early years, but I think that twenty minute clip captures so much of their relationship and is one of my most precious memories of their childhood. They have never been friends, pals. She has always engaged with him the way she does with all adults, as a means to have her needs met. And he has always engaged with her in a caregiver way -big brother, shepherd and teacher.
Now seventeen and preparing for college, he continues to jump in to help. Last night it was changing bed linens and getting his sister showered and dressed after another accident in regression in toileting that is causing a great deal of stress for all. I often look at him with pride and think what a great husband and father he will be one day, quite at ease changing diapers and being awakened early in the morning. We haven’t viewed that video in a while. I wonder what my son would say now, a dozen years later?
For more on autism and siblings, I looked to the Autism Society where I found some helpful information, some tips for parents on supporting their other children.
Here are some highlights of their tips:
- Explain autism to siblings: “do it early and do it often” in developmentally/age appropriate ways in order to help siblings understand behaviors.
- Help siblings form relationships: since social play does not come naturally for kids with autism, it can be disappointing for siblings to have their attempts at play rebuffed. Teaching your other children a few skills to help engage their sibling with autism can help facilitate play.
- Find special time for siblings: It’s impossible to provide kids with exactly the same amount of attention, particularly when one child (or more) has autism. Making a commitment to designated time just for siblings and parents can help alleviate those feelings of unfairness.
- You don’t have to do everything as a family: there are times when it just makes sense for parents to participate in family activities without their child with autism.
- Find support for siblings: Having a sibling with autism can be isolating. It can be quite helpful to find peers who experience the same challenges.
From Sandra Harris, Ph.D., professor and dean at the Graduate School of Applied and Professional Psychology and E.D at Douglass Developmental Disabilities Center at Rutgers University
For additional information on autism and siblings and sibling support, please check out the following links:
Bottom Line: There’s no question that autism has an impact on siblings. Most siblings cope well and handle the challenges with the love and support of their parents. Are you the sibling of someone with autism? How has this impacted your life? We’d love to hear your story.