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Dear Dr. Reinke,
 
My partner and I have two children, Charlie, who is 7, and Max, who is 4 and just received an autism diagnosis. We recognize that we have been so focused on Max’s needs, that we are worried about Charlie getting lost in the shuffle. We don’t want him to feel like we aren’t paying as much attention to him as we are to Max. What should we do?
 
Sincerely,
Worried about the “Other” Kid
 
 
Dear Worried About the “Other” Kid,
 
Your concerns are valid, as siblings of children with autism may feel just that – like they are the “other” kid. It can be hard to share your time and energy evenly when your child with autism likely demands more of these resources. It can feel like a no-win situation. There are some things you and your partner can do, however, to make sure Charlie is feeling included and valued.
 
How have you talked about autism in your family? Does Charlie know Max has autism? Sometimes parents struggle with telling their child with the diagnosis about the diagnosis (i.e., the child with autism doesn’t know he or she has autism), let alone talking about it with the other child(ren). In fact, about 1/3 of typically-developing siblings are not told of their sibling’s diagnosis; this is particularly true if the typical sibling is under the age of 6 or if the sibling with a disability is considered higher functioning/needing fewer supports (Tanaka, Uchiyama, & Endo, 2011).

Sometimes parents are afraid of their other children’s response or may think “of course s/he knows ____ has autism”, even though an intentional conversation has never been had. It may provide you some relief to know that the vast majority of children who are told “you brother/sister has autism” already knew something was different about their sibling (Tanaka et al., 2011). When siblings are informed of their brother or sister’s diagnosis, the most common reaction is to have no reaction at all. So your Charlie might very well have a response of “oh, ok. Can we have pizza for dinner?” Common reactions also include reacting more positively than the parents’ expected and reacting with understanding; far fewer children had a reaction of sadness.
 
If you have not already openly talked to about Max having autism, I encourage you to do so! Rather than saying, “Max is different” and leave it at that, you might read a book together as a way to begin the conversation. Some recommended titles include: All About My Brother; Amazingly…Alphie! ; My Brother Charlie ; and Everybody is Different: A Book for Young People Who Have Brothers or Sisters with Autism (you can find some of these titles at the AuSM Lending Library!)

Using books can be a safe way for Charlie to explore the different emotions he may be feeling, without him needing to come up with the language himself. Books also allow you, as the parent, to normalize Charlie’s feelings and to let him know that whatever he may be feeling as a sibling actually is common. Having open conversations and allowing space for Charlie to ask questions will help him understand why Max may do the things he does. This also can be a good opportunity to begin a conversation about similarities and differences – in what ways are Charlie and Max the same? In what ways are they different? I also encourage you to reiterate that different isn’t bad – it’s just… different.
 
Now, there are really good things and really hard things that Charlie may experience around having a sibling with autism. First, let’s discuss the really hard. Siblings of children with autism can be embarrassed about their brother or sister’s weird behaviors, particularly when around friends or out in public. If Max has a meltdown at the grocery store, Charlie is likely very aware of the stares, judgements, and assumptions being made. Siblings also can be jealous, mostly related to the amount of time and attention given to the child on the spectrum. If you are taking Max to multiple therapies and appointments each week, even that extra time with you in the car is something that Charlie isn’t getting.

Siblings also may be frustrated about not being able to communicate with their brother or sister, or not being able to play with them like they may want to. Max and Charlie may not be able to play outside together or play a video game together because Max may have trouble with sharing or turn-taking.

Many children are very perceptive and fully recognize that their brother or sister’s needs may be stressful for their parents, so they overcompensate; that is, they try to make up for whatever deficits they perceive their sibling has by being a star student or a rule-follower or anything else that does not add additional stress to the family. Generally, parents perceive these overcompensating behaviors as the child being “ok” and “the good kid”, though overcompensation also can be problematic in the long-run, as striving for perfection and trying not to cause problems can harbor resentment and negatively impact the quality of both the sibling and the parent-child relationship.

Finally, Charlie may have many concerns, and these concerns are likely to change over time. Right now, Charlie way worry about being embarrassed by Max’s differences and wanting to fit in with his peers. As Charlie gets older and considers starting his own family, he may begin to have concerns about the heritability of Max’s diagnosis. As Charlie matures, he may become more and more concerned about Max’s future and their own related caregiving responsibilities; for example, What’s going to happen to Max when he grows up? Where will he live? Will I have to take care of him when my parents get older or die? (Vadasy & Meyer, 1996). Though it may seem like these conversations are many years down the road, it is possible, even likely, that these sorts of questions and concerns have already crossed Charlie’s mind.
 
With all that in mind, siblings of children with autism also can experience some really great things! Research has shown that siblings of individuals with ASD are generally well-adjusted, and often reflect on their experience as a sibling as positive. If not now, at some point, Max and Charlie may have a unique connection with each other that no one else fully understands; Charlie may just “get” Max’s behaviors and preferences in a way that even you don’t understand. Siblings of individuals with disabilities also tend to have higher levels of empathy and altruism, as well as an increased tolerance for difference. This applies to not only understanding and accepting peoples’ different abilities, but also differences related to ways of thinking, ways of being, and ways of living.

Siblings of children with autism also grow up with an increased sense of maturity and responsibility, which directly translates into being more autonomous and self-sufficient as an adult. Increased empathy, understanding, and open-mindedness are arguably positive characteristics that many people would look for in a friend, romantic partner, and even an employee.
 
Even though Charlie is only 7, there are a few things I would suggest in terms of what Charlie may need. Let’s break this down into what information Charlie may need, and what opportunities Charlie may need (Heller, Kaiser, Meyer, Fish, Kramer, & Dufresne, 2008):
 
Siblings of children with autism need information about:
  • their sibling’s disability and its implications (What is autism and how might Max’s autism impact Charlie?)
  • treatment services for their sibling (What therapies is Max going to and why? Can Charlie be present or participate in any of the therapies? I would particularly recommend inquiring about Charlie’s participation if you are pursuing in-home behavioral therapy)
  • plans their parents have for their sibling’s future (What are you hoping for Max’s future? How do you see Charlie being a part of this? I would recommend keeping these age-appropriate for now, though not shying away from talking about what you want for Max’s future as Max and Charlie get older)
  • how to effectively advocate for their sibling (I encourage you to invite Charlie to participate in Max’s IEP meetings so that he can see you model advocating for Max)
 
Siblings need opportunities to:
  • meet their peers (other children who have a sibling with a disability)
  • discuss common joys and concerns with other siblings (this helps with normalizing what Charlie may be experiencing related to being Max’s sibling)
  • learn how other siblings address problematic situations frequently faced by brothers and siblings (connecting with other siblings will help with this)
  • discuss their current and future roles in the life of their sibling who has a disability (having open conversations in your family about autism and inviting Charlie and Max to share their own thoughts and ideas about Max’s future)
 
One resource you could consider is for Charlie to attend a local SibShop, which is a group specifically for children who have a sibling with a special need. You can read more about SibShops here: https://www.siblingsupport.org/ . Children’s Hospitals and Clinics of Minnesota will be hosting a SibShop on Sunday, May 6 from 1:30-4 p.m); you can register here: ( www.childrensmn.org/forms/sibshop) .
 
Another online resource specifically for siblings of people with special needs is The Sibling Support Project: https://www.siblingsupport.org/ Though this website includes resources for siblings of all ages and of all special needs (including special health care needs, developmental disabilities, and mental health concerns), it is a great way for siblings to connect with other siblings and access resources.
 
Finally, while considering the challenges and the benefits Charlie may experience as a sibling, I encourage you and your partner to do the following (Heller et al., 2008):
  • try not to make any assumptions about what Charlie thinks, feels, or hopes for Max; instead, ask Charlie about his feelings and concerns
  • provide Charlie with opportunities to meet other siblings of children with autism/special needs
  • discuss your expectations and hopes for Max’s future early on and include Charlie in these conversations
  • accept that the “plan for the future” is fluid and might change
 
We know that there is no single relationship longer than that between siblings. By encouraging open, honest, and sometimes difficult conversations, Charlie will have opportunities to share what he thinks, feels, and believes about Max’s autism, which may help him feel like an included, valued, and important member of the family.
 
Warmly,

Dr. Reinke
 
 
 
References and Resources
 
Heller, T., Kaiser, A., Meyer, D., Fish, T., Kramer, J., & Dufresne, D. (2008). The Sibling Leadership Network: Recommendations for research, advocacy, and supports relating to siblings of people with developmental disabilities. Chicago, IL: Sibling Leadership Network.
 
Tanaka, K., Uchiyama, T., & Endo, F. (2011). Informing children about their sibling’s diagnosis of Autism Spectrum Disorder: An initial investigation into current practices. Research in Autism Spectrum Disorders, 5 (4), 1421-1429.
 
Vadasy, P. F., & Meyer, D. (1996). Living with a brother or sister with special needs: A book for sibs . Seattle, WA: University of Washington Press.
 
Sibling Support Project: https://www.siblingsupport.org/
 
 
 
 
 
AuSM Counseling and Consulting Services
Dr. Amy Carrison, PsyD, LADC
Sara Pahl, MS, BCBA, LPCC, NCC
Dr. Jennifer S. Reinke, PhD, LAMFT, CFLE
Barbara L. Photo
Dr. Barb Luskin, PhD, LP
Beth Pitchford, LPCC
Pronouns she/her
Meg Benefield, MSW, LICSW
Pronouns she/her
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