I offered to read my friend’s scholarship essay yesterday. The essay prompt read, “Tell us about yourself. Discuss your long-term goals and why you feel this scholarship will help you materialize them”.
Her first sentence read, “My brother has intellectual disability, autism spectrum disorder, and a rare genetic disorder”.
I froze after reading this.
“My brother has” was used an introduction to a story about her own identity and aspirations. As a fellow sib to a brother who also has autism and an intellectual disability, I felt a wave of familiarity roll over me. This is a story that many sibs know well. The story of being “two peas in a pod” and the story of “I’ll always be there for you.”
And for most of us, the experience of having a sibling with a disability is overwhelmingly positive. Research shows that sibs of individuals with autism have more family resilience1, more empathy2, and more maturity3. I was in a sib group as a kid and I remember our big, exciting play dates being trips to library so we could check out new books together. The adults in our lives would constantly tell us how well behaved we were. And we wore that label of maturity as a badge of honor. I specifically remember feeling light years beyond kids who were playing “kid games” like cat’s cradle or tag. And ultimately, this maturity and empathy benefited me. I can proudly say I’m now in a doctorate for clinical psychology working with kids who have disabilities.
But as with every part of life, there’s another side to this coin, and one that doesn’t get talked about as much. The ‘other side’ is the idea of the glass children. Glass children are children who appear strong and unshakeable. They are so strong, that people seem to look right through them, like glass. This is because these children’s caregivers have a fixed amount of energy and resources. When there is another child in the home who has significant needs, caregiver resources get disproportionately focused on the child who needs them most. And so, the other children, the glass children, feel a pull for perfection. They do everything needed to resist adding undue stress to caregivers who are already giving so much. And while these children may have the skills to succeed, they may also feel great pressure to care for their sibling, confusion about how to help their sibling, and fear of the future.
As mental health providers, extended family members, community members, and educators, we need to recognize these children and explore their fears, reservations, and hopes. It is unrealistic to place this responsibility solely on caregivers. We need to work together to provide these children space to be confused, to ask questions, to make mistakes, and to be unsure. “Being heard is so close to being loved that for the average person, they are almost indistinguishable” – David Augsburger
(Picture: Young child scrunching up his face while looking through a large magnifying glass)
To learn more about the glass child phenomenon check out Alicia Arenas’ Ted Talk here:
https://www.youtube.com/watch?v=MSwqo-g2Tbk&ab_channel=TEDxTalks
References:
1. Bayat M. Evidence of resilience in families of children with autism. Journal of Intellectual Disability Research. 2007;51(9):702–714.
2. Benderix Y, Sivberg B. Siblings’ experiences of having a brother or sister with autism and mental retardation: a case study of 14 siblings from five families. Journal of Pediatric Nursing. 2007;22(5):410–418.
3. Green L. (2013). The well-being of siblings of individuals with autism. ISRN neurology, 2013, 417194.
