Written By: Jennifer Cummings, MA, LBA, BCBA
Vice President of Clinical Operations, BHW
“Expert Perspectives” is a collection of writings featuring thoughts and insights from valued members of the BHW team. We are grateful for Jennifer’s unique perspective on this topic, and we hope that you will gain a better understanding of what it’s like to be a sibling of someone with special needs.
Who We Are
Siblings of autistic children and adults are unique! We like to “hang around” – sometimes we might spy on ABA sessions, insist on joining a particular activity or tell you how exactly you should handle this new (to you) behavior. Other times we want absolutely nothing to do with therapists, our sibling, or whatever is being taught. Sometimes we want to be the center of your attention and, as a result, we act out.
What the Future Looks Like
As we get older, we may withdraw from our sibling but we might also get overly involved. We are likely to join helping professions for work as adults. Studies suggest we have more empathy than other types of siblings (Pilowsky et al., 2004).
We worry about what caregiving will look like after our parent(s) die and we tend to create an adult life that can quickly accommodate our sibling(s) when this happens. We establish careers earlier than our peers without siblings because we know we’ll eventually be financially responsible for our sibling(s) (Meyer & Holl, 2014). If we do decide to have children, we have them later (again, financial stability).
Sister siblings are more likely to get married later than sisters of those without disabilities, but our divorce rates are lower (again, sisters only- brothers showed no difference in divorce rates).
We’re pickier when choosing partners and there is likely a “litmus test” phase in our relationships where we expose our partner to our crazy little life and see how they manage and we don’t take anyone too seriously until they pass that test (Meyer & Holl, 2014).
Other variables impacting our success are socioeconomic status, severity of problem behavior of our sibling, whether our sibling got ABA, and family size (Meadan et al. 2009). Interestingly, despite family size, there is typically one sibling who takes on more of the caregiving responsibility than the others in the family.
But…We Want to Help! Let’s Find Balance
Our parents have more important things to deal with. Or at least that’s what we tell ourselves growing up and explains why we try to “need” as little as possible from them. Siblings like us take on caregiving tasks very early on, because we see all that our parents are going through. Parents are often so overwhelmed, they don’t resist our help. And, while it may seem nice to have a mini-parent around to help with the sibling, this can take a significant toll on us. Barak et al. (2010) asked parents of siblings and then the siblings themselves to define the attributes of helpfulness and responsibility.
While parents of siblings described these as the positive attributes of their child without a disability, the siblings reported these personal attributes were the main source of their distress. The study recommends that parents:
- encourage and facilitate counseling for siblings
- lower assistance expectations in the home whenever possible
- facilitate sibling participation in extracurricular activities unrelated to their sibling with a disability, as siblings tend to have less opportunity to participate in independent events (e.g., sports, arts, etc.).
It’s Nice to Know Other Siblings
I didn’t know a single other sibling of someone with a disability growing up. It was my quirky little secret for a long time until…it wasn’t. A high school classmate of mine was an advocate for her peers with disabilities (she wasn’t a sibling…she was just awesome?) and started up a Best BuddiesⓇ chapter at my high school and there were a few other siblings involved as well as a lot of other, generally wonderful people. I quickly became part of the leadership of the chapter and, pretty soon, everyone knew I had siblings with disabilities.
I hosted recruiting events at school and held meetings with my high school’s administration to question and eventually dismantle their practice of “volunteering” the special education students to pick up the trash left by their peers during lunch (Can you believe??). I think my essay about being a sibling got me into one of my top picks for college. All of a sudden, I was proud to be a sibling. But, had it not been for the small, but influential community I had found in Best BuddiesⓇ, I think I would have kept it quiet for much longer.
In college, the Best BuddiesⓇ chapter left a lot to be desired so I took a break. Right after college, I made fast friends with someone who was not only a sibling like me but also had a sibling with the exact same dual diagnosis as one of my siblings (a very unique one)! We almost didn’t need to share details about what our lives were like growing up – every time one shared an anecdote, the other would immediately concur- it was the exact same for them. I started getting familiar with the Sibling Support Project and their SibShops efforts and was reminded of just how important it was for me to be surrounded by people that share in the unique experience of being this kind of sibling.
Here’s What You Can Do
When parents ask me what they can do to support siblings, I encourage them to:
- create something unique between them and that child – it should have nothing to do with disability and it shouldn’t involve their sibling in any way- it’s just something special between parent(s) and child. It can be short and sweet and it goes a long way.
- get the sib involved with SibShops- even if it’s just reading their books (the books geared toward parents and the books geared toward the sib) as they provide such great tips.
- provide the sibling with information (Meyer & Holl, 2014). Information about their sibling’s disability, information about the family’s plan for the future and the role the sibling will play in that plan. We should have a say, no matter how small. We are often left in the dark as young siblings and it’s probably because our parents don’t want us to worry but doing so often has the opposite of the intended effect. We know we are going to take care of our sibling(s) in some way so you might as well give us age-appropriate information and choices.
When clinicians ask me how they can support siblings, I give them all of the information above but also encourage them to include the sibling in their in-home sessions – that is, if they express interest in being involved. We have a ton of great insight and have been managing our sibling’s behaviors, often on our own, for a long time. We could use the help and we could probably help you!
If we don’t express interest, it still goes a long way for practitioners to acknowledge the uniqueness of our situation in some small way or for you to teach our sibling a skill that provides access to a mutually enjoyable activity. Most of us sibs have spent the majority of our lives catering to the ever-changing needs and preferences of our sib, just to keep the peace.
One time, a tutor working with my brother showed me that he had a small interest in the beach and surfing. That was all it took for my sister and I to go all in with surfing lessons for my brother. Surfers Healing provides surf lessons for autistic kids and adults and was so much fun for us- it was the first time that we could involve our brother in an interest of our own. Seems small but it was mighty.
Our brother actually had a hard time at first. The feedback from his first surf lesson was that he was “wiggly” and wouldn’t stay on the board. But, eventually, all he wanted to do was be in the water. He’s not a surf pro by any means but the beach is still something that he and I can share that incorporates both of our identities.
There’s so much more that is great(!) about being a sibling but I want everyone to know that there’s so much that’s difficult and never gets talked about. The stress of having a sibling with a disability simply cannot be overlooked. I’ll leave you with an anecdote from a training I attended with Emily Holl of SibShops that really resonated with me as it showed the great power these relationships can hold, the dedication and sacrifice we feel is necessary, and also the great love we have as siblings.
Source: Sibling Support Project
Meaden, H., Stoner, J.B., & Angell, M.E. (2010). Review of literature related to ehs social,
emotional, and behavioral adjustment of siblings of individuals with autism spectrum
disorder. Journal of Developmental and Physical Disabilities, 22, 83-100.
Meyer, D., & Holl, E. (2014). The sibling survival guide: Indispensable information for brothers
and sisters of adults with disabilities. Woodbine House.
Orsmond, G.I., & Seltzer, M.M. (2009). Adolescent siblings of individuals with an autism
spectrum disorder: Testing a diathesis-stress model of sibling well-being. Journal of
Autism & Developmental Disorders, 39, 1053-1065.
Pilowsky, T., Yirmiya, N., Doppelt, O., Gross-Tsur, V., & Shalev, R.S. (2004). Social and
emotional adjustment of siblings of children with autism. Journal of Child Psychology,
Ross, P., & Cuskelly, M. (2006). Adjustment, sibling problems, and coping strategies for brothers
and sisters of children with autistic spectrum disorder. Journal of Intellectual &
Developmental Disability, 31(2), 77-86.
Verte, S., Roeyers, H., & Buysse, A. (2003). Behavioural problems, social competence and
self-concept in siblings of children with autism. Child: Care, Health & Development,