It’s not always easy having a brother or sister with special needs. While research shows that this experience can strengthen a person’s empathy, patience, and adaptability, having a sibling with special needs is also linked to higher rates of mental health issues.
It’s no secret that parents and caregivers of children with special needs are spread thin. If they have more than one child, they may worry about overlooking their typically developing children. And that can be an overwhelming concern to add to an already full load.
Fortunately, there are simple things you can do to support all of your children’s needs. It starts with awareness–understanding how siblings of kids with special needs may react to their family dynamic. As a sibling to someone with autism spectrum disorder (ASD), this is something I can speak to firsthand.
Growing up with a brother with autism spectrum disorder (ASD)
I was eight years old when my two-year-old brother was diagnosed with autism. And while I don’t remember my parents telling my younger sister and me about his diagnosis, I do remember how stressful the situation was for them. I quickly realized that they were grieving the loss of what they thought their life and their child would be like.
Now, I should mention that my brother was diagnosed in the 1990s. We did have AOL (remember dial-up?), but the Internet provided limited information. For several years, my mother worked tirelessly to turn our home into a clinic, with speech therapy and occupational therapy around the clock–the therapists even came on vacation with us! Every other Sunday, we had several speech-language pathologists in our home, talking with my mother for hours. My mother created home programs, drove my brother to all sorts of specialists, and was always finding teachable moments to help him carry over the skills learned in his sessions. She helped other parents cope with their children’s diagnosis, too.
As for my father, he used his occupation as an attorney to fight tooth and nail for my brother to receive the appropriate services and accommodations. He won my brother’s case, propelling an incredible law career representing children with special needs.
Fast-forward 25 years, and with all the interventions he received, my brother is doing incredibly well. He works for a leading media investment company, has friends, drives a car, is an amazing uncle to my son, and is extremely athletic (think Steph Curry-level 3-point shots!). He has a wonderful memory and sense of direction, and he’s hard-working, humorous, and loyal. I really enjoy our Friday Zoom catch-ups, which usually include a joint workout, too!
But when I was young, it wasn’t always easy. I became extremely protective of my brother, as if I was his mother. If anyone even looked at him funny, I’d turn into the Incredible Hulk. Many people thought of people with autism as savants, or severely challenged. But I knew my brother was so much more than his autism diagnosis. To this day, we have a special, unbreakable bond, and nothing will ever come between us.
With that said, there were some external circumstances that made things difficult for me as a child. I never felt like I could be silly or act differently than my prescribed role–the good child who never did anything wrong. At times I felt helpless, watching my parents go through what they went through. There were times I prayed to have alone time with my mom or dad.
When my brother was young, anytime I would speak to him, I’d ask myself, “Was this clear? Did he understand me? Should I say this another way?” I remember resenting that other kids could speak to their siblings so effortlessly, and I had to prepare in advance. (Thankfully, it’s been a long time since I’ve had to talk to my brother in this way.)
While it was critical that my mother find teachable moments for my brother in everything we did, sometimes it affected my experience as a child. For example, whenever we watched a movie as a family, my mother would pause or speak over the film, telling my brother what was happening or asking him to explain a plot point in his own words. I always felt shame and guilt for being frustrated that we could never just watch a movie without the editorial. But of course, I never brought it up.
There are so many resources today for siblings of children with special needs–organizations, support groups, social media. I wish my sister and I had been able to attend a sibling support group. Meeting other kids our age going through the same thing would have helped significantly.
Tips to support siblings of children with special needs
Of course, not all kids deal with these challenges in the same way. But here are some common reactions children may experience when they have a sibling with special needs–and tips for how parents can help.
The need to be perfect: The sibling’s anxiety levels may skyrocket if they make a mistake. They may feel like a failure. Since this child doesn't have special needs, they feel they have no room for error. This standard of perfection is impossible to achieve, and it often leads to feelings of inadequacy.
- How caregivers can help: Allow your children to make mistakes! Ask them what they learned as a result. Frame mistakes as a teaching tool and something that everyone experiences, rather than a threat to their intelligence or capabilities.
Being a people-pleaser: People-pleasing starts as parent-pleasing. Your child may anticipate your needs before you’ve even said a word, because that’s when they’ll receive praise and love from you. They might track your mood and strive to make you proud while doing their best to never rock the boat.
- How caregivers can help: Express your love to your children in a variety of ways. Show your children that they don’t have to do anything to be loved by you. Randomly hug them or share a snack with them. Actively listen to them talk about school, friends, or anything else. Carving out that time can take just a few minutes, but it will make a world of difference for both of you!
Feeling like they can’t express feelings: A child with special needs may have complex challenges. When their sibling has an issue, whether it’s a problem with a friend or an academic struggle, it may seem small in comparison.
- How caregivers can help: Seeing your child express an emotion other than happiness can be difficult. And their struggles may seem minor compared to the laundry list of issues facing your child with special needs. However, their feelings about their problems (no matter how insignificant they may seem) are valid. It’s healthy for kids to express an array of emotions, and not having the space to show their feelings or have them validated may stunt their emotional growth. Encourage your children to share their feelings, and listen without judgement or blame.
Being afraid to ask for help: Your child doesn’t want to add to your plate (which is already filled to the brim!). They may become extremely independent and never ask for help for fear of being a “burden.”
- How caregivers can help: Your child with special needs may take up much of your time–to the point where you don’t even have time for yourself! With that said, help your child when you can, and if you can’t, reinforce how great it is that they’ve asked for help. Recommend someone else who can step in, such as an older sibling, grandparent, neighbor, or friend.
Feeling like they have to grow up quickly: From feeling 100% responsible for handling their own problems, to feeling responsible for their sibling with special needs, there are moments when your child may feel they have to grow up quickly.
- How caregivers can help: Give your child the space to be a kid! Let them be playful and silly, and join them if you can. It will create wonderful memories together.
Remember, people who have siblings with special needs often develop strong empathy, tolerance, and resilience. But as a parent, being aware of the potential challenges can help you support all of your children, in whatever way(s) they need. While I’m proud of my brother for coming such a long way, the truth is, I have, too.