The Most Impactful Effects of Autism on Siblings
Siblings are often each other’s first teachers, models, and playmates. Whether they develop a deep friendship that lasts a lifetime or not, there’s no denying that siblings share a bond and a unique relationship.
For siblings of autistic children, there is often a more nuanced relationship. From increased empathy to sacrifices and frustrations, the effects of autism on siblings range, and are not always top of mind for us parents. It’s easy to spend so much of our focus on what to do (and NOT to do) with our autistic child that we forget that our neurotypical child may also have additional needs.
This is something I am especially attuned to with my neurotypical daughter (my son, Sean, is autistic and has sensorineural hearing loss), because I am that sibling, too.
My brother, Mikey, was born 20 months after me with Down Syndrome, and from that moment on we had an unbreakable bond. I wanted to hold him as soon as he came home from the hospital and that’s when our deep, lifelong connection began.
My parents did not force this bond. I was simply compelled to be a caretaker from the beginning. However, that is not always the case, and THAT IS OK. In my work I have seen some siblings who are very bonded and some who do their own thing and maintain their independence. Not so different than neurotypical sibling sets.
As an adult looking back, I can more clearly see how being a part of a neurodiverse family had an effect on me. The good stuff, the hard stuff, and everything in between.
Because of my experience with Mikey, I have been very careful about what we expect of our daughter, Nora, when it comes to her role as a sibling. While we know that Sean has many more, specific needs, we try to keep focused on Nora’s needs, too.
We’re not perfect. (Say it with me: “Perfect doesn’t exist!”) We just do our best by trying to limit the sacrifices Nora has to make. One of the biggest challenges is simply timing. Like every parent everywhere, I cannot be two places at once. Recently, we wanted to add occupational therapy for Sean, but it was at the same time as the dance class Nora wanted to take.
So how do we manage these sorts of competing needs? First, I acknowledge to myself and the kids that not everything is going to be possible all of the time. Then, I looked for a creative solution. In this case, I did some digging and found a dance class for Nora on a different day so each child could have what they need. This was a happy ending, but it’s so important to remember that fair does not always mean equal. Each child has their own needs and meeting those needs is far more important than trying to make sure everything is equal all of the time, which is an impossible goal.
While there is debate among researchers about whether the effects of autism on siblings is generally negative or positive, I can honestly say as a sibling that I wouldn’t have it any other way. That said, here are my observations as a sibling, professional, and parent about the six most impactful effects of autism on siblings… the good, the bad, and everything in between:
Six Effects of Having an Autistic Sibling
Effect #1: Embarassment
Chances are your neurodiverse child has behaviors that do not fit into the norm. Loud talking, interrupting, body movements, big emotional reactions. These are all just part of an average day for many neurodiverse children. When you’re out in public as a family, this is likely frustrating to you as a parent. To the sibling this can be especially difficult and embarrassing. Remember when you were a kid and EVERYTHING your family did was embarrassing? It’s like that, only worse.
When your autistic child throws themselves on the ground at the grocery store, it may be tempting to tell their sibling to brush it off and/or ignore it. A better tactic: check in with the sibling and acknowledge the potential embarrassment and ask what they need. Just that simple check in can be so affirming for them.
Effect #2: Resentment of Sibling
When children are young, they don’t have the ability to see the big picture. When I was in elementary school my family had to make a big move. At the time I did not think it was fair that so much attention was focused on making sure Mikey’s school experience was not disrupted. Meanwhile, I had to leave all of my friends and start somewhere brand new. Why did Mikey get so much special treatment?
The fact was Mikey went to a very specialized school and needed to continue there. My education, on the other hand, was more flexible. While that may have been true, it hardly felt fair. I was able to shake off that resentment as an adult, but in the moment, I just wanted to feel important and be made the priority.
Sibling rivalry and resentment is not uncommon, and many of the strategies used for neurotypical sibling sets can be effective for our neurodiverse families, too.
Effect #3: Difficulty Navigating Relationships
The truth is, having a neurodivergent sibling often means that your relationships are not fully your own. As a young child I remember having fun playing with Mikey. But as I grew older, I often felt like he was interrupting precious time between me and my friends. There was a lot of, “Mom! Come get Mikey! He’s bothering us!” This became especially tricky in middle and high school years, when young life tends to be the trickiest. {I talk a lot more about this in my upcoming book.}
Being aware of these potential tensions is a good place to start as a parent. Try creating a healthy separation by establishing space and time for the sibling to interact with their own friends.
Effect #4: Belonging to a Wider Community
I grew up in what I referred to as, “Mikey’s World.” While this could have left me feeling ignored, my parents made sure that wasn’t the case. Yes, Mikey’s care was often at the center of decisions made for our family. There were therapy sessions, special ed school events and parenting classes, all of which I tagged along to when I wasn’t in school myself. But I wasn’t expected to just keep the chair warm and become invisible. The service providers, aides, and other neurodiverse families became our extended community and I felt like I was just as much as part of that community as anyone else.
Looking back now, I have such an appreciation for growing up in such an inclusive, welcoming environment. While the sibling of your neurodiverse child will definitely want and need their own social circle, activities, and time with you, they can also benefit from being exposed to a supportive special needs community.
Effect #5: Celebrating the Magic of Childhood
While this will be different for every individual depending on their diagnosis and personality, some neurodiverse people hang onto the innocence of childhood as they grow into adulthood. That is certainly the case with Mikey. During the holidays is particularly special. Every Christmas since he was a child, he sits next to the tree in anticipation of Santa and wakes on Christmas morning with a look of wonder in his eyes that says, “Santa came!” We hide Easter eggs every year and the look on his face when we go to Disneyland is pure magic.
His lifelong connection to these childhood wonders has had a profound impact on me. It’s helped me stay connected to that innocence and has affected how I honor family traditions. It’s such a gift.
Using language in your home to help celebrate that awe and wonder can model an appreciation for this different perspective. Especially as your children grow older and one stays attached to childhood innocence while the other does not.
Effect #6: Stress from Shouldering Ongoing Responsibilities
Siblings of neurodiverse people often have atypical roles in their family. Especially as we become adults and our parents get older. For me, this has meant moving from sibling to caregiver.
I am planning for his future, overseeing medical appointments, and taking responsibility for him. My parents planned for his future, never wanting me to shoulder this role on my own. But because of our close bond, it’s a responsibility I’ve chosen to take on. Of course, this will look different for every family.
As you plan for your each of your child’s futures and they get older, keep the lines of communication open so that your neurotypical child has agency in deciding what role they are able to take on.
Unique Ways Neurotypical and Neurodiverse Siblings Interact
The truth is every individual, and every sibling set is unique. No two relationships are the same. That said, there are some unique ways that neurotypical and neurodiverse siblings interact. Being aware of these themes can be helpful as you balance parenting two very different children.
Not all siblings will have a close bond. There can be a lot of separation between siblings. There is nothing wrong with this and is often a result of the neurotypical sibling reaching for some independence. Consider finding a support group for them to join where they can share their experiences with other siblings.
Often when these siblings play together, it will not look like other neurotypical sibling sets. They may engage in parallel play like toddlers often do, and/or do the same activity with a lot of physical distance between them.
Children with autism may have atypical play patterns and/or engage mostly in solitary play. As a BCBA (board certified behavior analyst), one of the areas I work on closely with parents and children is how to expand play skills. We may think of play as a simple thing, but like so much of human behavior there is really many different components of playing with others: initiating play, sustaining play, cooperation, turn taking, sharing, mutual understanding. Each of these individual skills may come naturally to the sibling, but the neurodiverse child will often need help developing them. As the parent, consider who is going to teach them? Does this organically fall to the sibling? For me, growing up in the 80’s without the current knowledge around child psychology, it did. I didn’t know any better and often took on the role without a second thought. Now, in my own family, I’m careful to consider how this responsibility falls to Nora. I try to balance this for her. For instance, if she has taken on a lot of this “teaching” role in a given day, I make some special time just for her without her brother before bedtime.
Neurotypical siblings often take on the role of encouraging and modeling behavior for their siblings. This is less about being a teacher and more about being a cheerleader. Recently I saw this play out at dinner time at our house. Mealtimes are a very challenging time for Sean (and therefore, for the rest of the family). During this meal we had a token board running. He earned a token with each bite he took. If he got to a certain number, he could choose a prize item. Without any prompting or expectations on our part, Nora began encouraging him by saying things like, “Let’s do it together!” and, “You only have 2 more bites left!” This encouragement, and seeing Nora take bites, helped Sean achieve his goal.
The Benefits of Having a Sibling with Autism
I could not imagine it any other way. Both from my experience as a sibling and parent, I see how having a neurodiverse sibling helps us learn to pay attention to people more closely, increase empathy, recognize strengths in others, and celebrate our differences.
Being Mikey’s sister has had an indelible impact on me. He has a way, without words, to connect and have an effect on the people he meets. It’s not uncommon for me to run into people from his past and hear stories about the positive effect he had on their life.
It’s important to remember that this is different for every sibling. Ultimately every child wants to be seen, loved, and have a sense of belonging. As parents, we can create a home that supports ALL of our children by paying close attention, getting curious, and making time and space for each individual.
Free Guide: "What a Sibling Wants You to Know"
**Have you downloaded my free guide yet? “What a Sibling Wants You To Know” is the guide I wish every parent of neurodiverse and neurotypical siblings had. In it, I share five key ideas and simple action steps you can take right away. Download for free here.
