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My daughter, Anna, is the youngest of three children and the one who helped me to understand how important community and support are for the siblings of people with autism. As the sister of an older brother on the spectrum, Anna has always identified with autism.

What she lacked was a community of peers who understood what life with a brother or sister with a brain-based disability is like. That is, until we found Sibshops. In fact, it was largely due to Anna that I became a Sibshop facilitator in 2013. By participating in these fun, high-energy recreational opportunities monthly during the school year for several years, Anna has met other “super siblings” and learned a lot about how they and their families address autism. (“Super siblings” is Sibshops’ term for siblings of people with autism. Supporting and living with a sibling with a disability can be challenging, so super siblings often learn and mature more quickly than their peers because of their experiences.)

Considering that most children with autism have at least one brother or sister, there are a lot of super siblings like Anna out there who need fellowship and support for social-emotional needs. Emotions and attitudes about having a sibling with autism run the gamut. Sometimes parents get so caught up in the dynamics of raising a child with autism that they ignore or fail to consider the super sib’s feelings. While that is understandable, it affects not only the sibling’s immediate well-being but also the sibling’s relationship with the child with autism. And really, the longest-lasting relationship between the person with autism and any other family member is likely to be with the sibling.

These are some important take-aways from Sibshops’ super siblings:

• Don’t pretend I don’t know that my sibling is different. Please tell me what “different” means with specific, accurate terminology I can understand. Don’t just say my brother has “special needs.” Tell me he has autism, and this is how we found out. Tell me that means he’s really good at this thing, but this other thing is really tough for him.
• Do include me when you’re talking about how our family functions differently because of autism. When you can’t bring my sister to my basketball game because she can’t handle the sounds, I feel left out and unimportant. Find a way to be at my game — even if it means finding a respite care provider for my sister.
• Sometimes I feel guilty about wanting my own moment. Whether it’s a trip to the store to buy something or a volleyball tournament, I wish I didn’t have to worry about my sibling having a meltdown.
• Don’t think my peers don’t notice something is different about my brother. They’re asking me questions at school. Kids who aren’t so nice are teasing me about my sibling. The more I know about my sibling, the better I can handle social
• Do help me find a community of my own. Parents have support groups and my neuro-diverse sibling has school and therapeutic supports, but I need a tribe too.
• Do recognize that being a super sibling makes me resilient. I get that there’s drama, but I’m good at bouncing back. Still, that doesn’t mean I am always content to be an afterthought.
• Even though my connection with my sibling is different, it’s important. My relationship with my sibling might not look like the typical brother/sister interaction, but my love for her is fierce. While I’d defend her to anyone, I miss being able to play the way I’d like to.
• Don’t think I miss the little things about my sibling. I see him in a positive light. Compliments come more easily for me, because I notice small achievements in big ways.

The siblings who participate in our Sibshops have taught us that they are loving, growing, empathic, sensitive, observant, strong individuals and can handle so much more than we may have believed. They are learning life skills that are valuable to their own future and the future of their sibling. They are our future leaders, and we owe it to them to support, educate, and love them every step of their journey.

For more tips from siblings, check out OAR’s Siblings guidebooks written by siblings of people on the spectrum.

Denise Schamens, B.S., has three children, two with special needs. Because of her experience as the parent of children with special needs, she served for 10 years as a family engagement liaison for the Cooperative Educational Service Agency #1 in Wisconsin. She is currently the co-founder, vice president, and board director of Good Friend, Inc., a nonprofit organization dedicated to creating autism awareness, teaching acceptance, and fostering empathy. She has also provided autism awareness, acceptance, and empathy training to more than 40,000 K-10th grade students in Wisconsin. In 2013, she became a Sibshops facilitator.