As a school-based mental health professional and a sister of a person with autism spectrum disorder (ASD), the sibling perspective on family-centered care is not just important to me, but necessary in order to give comprehensive and competent care to the families who look to communities and schools for help. Sibling relationships are especially unique in that they are typically the longest lasting of most human relationships. Therefore, siblings require unique services.
Alison Kolber-Jamieson, Ed.S
Lovell and Wetherell (2016) examined the psychophysiological impact of children with ASD on siblings. Their results indicated higher levels of depression symptoms in children who had siblings on the autism spectrum when compared to children who had siblings not on the autism spectrum. Data indicated that siblings’ depressive symptoms were related to the behavior problems of their sibling, as well as social support, or lack thereof, received through the school or at home. Additional challenges for siblings include lowered self-esteem (Emerson & Giallo, 2014), increased risk of internalized behavioral problems (Meyer, Ingersoll, & Hambrick, 2011), and a heightened sensitivity to typical family stressors (Emerson & Giallo, 2014; Meyer, Ingersoll, & Hambrick, 2011).
For this project, I sought to find what social and emotional needs are most pressing to school-age siblings of individuals with ASD, as well as what services were provided to them. I interviewed nine participants with the intent to gather individual experiences of growing up with a sibling with ASD, social and emotional experiences due to the participant’s sibling’s diagnosis, and what was – or would have been – helpful.
Pressure to Perform
Many participants described feelings of anxiousness over a presumed responsibility to be “unproblematic” or “perfect.” This included pressure to perform well in school and extracurricular activities while still being available to help at home. They also reported feeling sadness and grief over missed or sacrificed opportunities due to family obligations.
“I want to be the one that is there with him all the time and watching over him because I know of issues in the past where things have happened to him and he hasn’t been able to communicate to us. And then I’m terrified… What if there are some things going on and he can’t tell me?”
“I do put a lot of pressure on myself to succeed academically. I don’t know if that’s a product or not of [my brother] not being able to succeed in this one way. I wonder if that’s a reason why I put a lot of pressure on myself.”
Systems of Support
One of the most universal findings was participants’ desire to have a support system of others who “get it,” such as a support group or Sibshop. Many talked about the feelings of isolation that come with having a sibling with autism and felt that they could not talk to their friends about home life, as some situations are difficult to explain to those who have not experienced it. At the same time, participants felt they could not discuss their feelings at home, because they did not want to cause feelings of guilt in other family members.
“I wish I had somebody older to talk to when I was younger… Not my parents. Somebody who understood my brother’s situation and understood what it was like to be a sibling and told me it was okay to feel the way I felt.”
“I googled once, because I was curious, ‘autism family resources’ and the stuff that popped up was all for parents, not the whole family. It would be nice to be included more in the services.”
“Normal Kids”
Though there are many difficult experiences that come with having a sibling with ASD, there are many positive elements as well. All the participants described their siblings as their favorite person and reported feeling uncomfortable when others assumed that their life is extraordinarily difficult. Situations that would appear strange or difficult to those who do not live with an individual on the spectrum – siblings may take in stride as a part of their everyday life. Though some situations may be challenging, no meaningful relationship is without challenges.
“When people find out, it’s weird because they think that I’m a really good person. They say, ‘Oh it’s so great that you’re such a good sister,’ even though they haven’t really seen me as a sister.”
“[My brother] is one of the funniest people I know, because he doesn’t have the best filter and it just ends up hilarious. He’s also super into music and I’ve learned so much from him. Getting to watch him talk about what he’s passionate about is really exciting to me.”
“Sometimes people hear the label and gasp and say, ‘Oh my goodness, that must have been such an experience.’ I’m not going to say that it wasn’t challenging, but I’m also not going to say we didn’t have a lot of fun growing up. We were normal kids for the most part. Normal kids that just had some different things to navigate than most families.”
Supporting Siblings
Siblings of children with ASD experience unique challenges that impact their everyday lives. Thus, there is a need for community and school-based mental health services for siblings of children with ASD. Many families are not aware that programs or professionals may be available to provide support and resources to the entire family and many professionals do not take the initiative or do not know how to begin to serve in such a role (Lovell & Wetherell, 2016).
These interviews showcase the complex and unique experience of having a sibling on the autism spectrum. According to the participants, community and school based-mental health services are crucial. Safe spaces to talk about difficult experiences and resources to educate one another about ASD would help normalize the social and emotional issues these individuals face. However, accessibility to established support groups is often affected by groups being too far for most families to travel to or too poorly advertised to be easily searchable. Mental health professionals and community members have the opportunity and responsibility to increase accessibility of support for all who need it. School-based mental health professionals also have an important role, as they have access to the individuals with autism and their siblings each day. This provides a unique opportunity to provide support in a natural and consistent setting. Examples of this include school-wide education, after-school support programs, and one-on-one counseling.
All individuals want a sense of normalcy and understanding, and that includes folks on the spectrum and their families. Creating spaces of inclusivity, honesty, and positive support are crucial to the social and emotional health of individuals with autism, their siblings, and our community as a whole.
Alison Kolber-Jamieson, Ed.S, is a school psychologist for Dayton Public Schools in Dayton, OH. For questions or comments, please contact her at (937) 216-4508 or akolber@daytonpublic.com. You can access her full research paper here: https://etd.ohiolink.edu/pg_10?::NO:10:P10_ETD_SUBID:186724
References
Emerson, E. & Giallo, R. (2014). The wellbeing of siblings of children with disabilities. Research in Developmental Disabilities, 35, 2085-2092. doi: http://dx.doi.org/10.1016/j.ridd.2014.05.001
Lovell, B. & Wetherell, M. (2016). The psychophysiological impact of childhood autism spectrum disorder on siblings. Research in Developmental Disabilities, 50, 226-234. doi: http://dx.doi.org/10.1016/j.ridd.2015.11.023
Meyer, K. A., Ingersoll, B., Hambrick, D. Z. (2011). Factors influencing adjustment in siblings of children with autism spectrum disorders. Research in Autism Spectrum Disorders, 5, 1413-1420. doi: 10.1016/j.rasd.2011.01.027
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