Critical Reasons to Offer Support to Autism Siblings
When you are little, it’s hard to understand why your sister seems to get upset all the time, why she is impossible to calm down, why she hits and throws things for no reason, why she doesn’t have to finish her dinner (or even sit at the table), why she won’t play with you, why mom and dad always seem to be paying attention to her.
As you get older, you might start to notice that other kids look at her funny; that the jumping and flapping around that you’ve always just seen as normal is now embarrassing. You hate leaving parties early because she can’t handle it, and you’ve stopped inviting friends over because it’s just too difficult to explain why your older sister keeps that same Disney movie running over and over on a loop. Maybe you’ve learned the word for this by now – autism. YOURS is the family that people talk about when they say they know someone with autism.
You see your parents stressed-out, exhausted during the little time they aren’t spending dragging your sister around to appointments, managing crisis or preparing for Individualized Education Program (IEP) meetings. You do everything you can to make things easier for them. You show them that you are the one thing they don’t have to worry about. You get good grades, you follow the rules, you help when you can. It would be nice if you could talk to your sister about your bad day at school, but you understand that she can’t do that yet. Even though you are struggling, you don’t let on, because you don’t want to add to the difficulty.
Eventually, you may start to notice the funny things your sister says that cheer everyone up. You may remark on her fabulous memory for all things dinosaur, her attention to detail, her love of cats. You begin to appreciate how she’s made you a better person. You are grateful for the family that cares so much for one another and focuses on the important things. You would defend her to the end of the earth.
You realize that you are the most important relationship in your sister’s life and that you will be the person she will know the longest. She is your loyal sister and your lifelong responsibility. It’s the most precious of relationships, and can also be the most overwhelming.
When looking at some of the difficulties siblings of people on the autism spectrum face, it is no surprise that many experience mental health challenges throughout the course of their lives. Common concerns include isolation, anxiety, depression, high levels of stress, social struggles and caregiver burden.
These kids are asked to handle really complex situations, often at a time when they don’t yet have the coping skills to manage them. Moreover, the grief of not having a typically developing sibling can lead to feelings of loss, feeling ‘different’ and even feeling like an only child. While typically developing siblings seem ‘easier,’ they may worry about being a burden to their parents and hide their challenges or bury them for as long as they are able. They may struggle right in front of you without you even knowing.
Care and support are not luxuries, but a critical need for these kids. The good news is that research suggests that with proper support, brothers and sisters of people on the autism spectrum can flourish in their role, help strengthen their family and become more empathetic, loyal advocates for themselves and those they care for.
Here are five critical reasons why siblings need support:
1. Siblings have complicated feelings
Many siblings have trouble managing their complex feelings about their brother or sister with ASD. Some feel jealousy over the amount of time and attention given to their sibling. Others express embarrassment, frustration, and resentment about how ASD affects their lives. Jointly, these siblings love their family and don’t want to add to their burden, making it difficult to reconcile these mixed emotions. It’s important for siblings to know that ALL of these feelings are normal. Having a safe place to express difficult feelings without harm is important for maintaining mental health.
2. Siblings feel alone or isolated
Many siblings say it’s easy to feel like they are the only ones going through this, that they feel like outsiders, that they are alone. It’s easy to feel forgotten when the world seems to be revolving around the immediate needs of a brother or sister. Additionally, having a brother or sister with autism can affect a sibling’s ability to participate in events with friends and family. Finding other people who are going through the same experiences has been shown to improve feelings of being understood and increase overall well being. Other siblings ‘get’ these experiences, understand the challenges faced, and really listen. Moreover, by finding like-minded others, siblings can share ideas, vent or just have a safe place to land.
3. Being a sibling of someone with autism requires coping skills and education
Young people don’t always understand what makes their ASD sibling different. They may have a tough time when their brother or sister fails to show an interest in them, when difficulty with emotional regulation and sensory issues leads to meltdowns, or when other people seem to judge them. Additionally, young people are often faced with far more crisis moments than siblings of typically developing brothers and sisters, and need a larger toolbox of strategies to ensure self-care and compassion.
Through support groups and counseling, siblings can acquire a better understanding of autism, allowing them to take things less personally and with greater empathy. Sibling support groups offer myriad strategies for coping with difficult moments and managing hard times. Support groups, social meet-ups, and family counseling can all lead siblings to discover ways of coping with stressors, building better relationships and developing the language to be advocates for themselves and others.
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4. Siblings are the longest relationship your ASD child will likely have.
Siblings are the marathon runners of the family when it comes to your child with ASD. The reality is that siblings will probably know their ASD brother or sister longer than anyone else, and maybe their lead supporter(s) and advocate(s) for life. They will experience the changing life phases from developing basic life skills and social communication to relationship building along with “adulting” and independence.
Each phase brings different challenges and requires a different set of coping skills. By providing on-going support, siblings can face these different stages with awareness and acceptance. They can learn when to ask for help, and how to manage new challenges as they pop up. No one successfully runs a marathon without training, without self-care and without someone cheering them on.
5. Siblings have their own issues and challenges.
In addition to the mental health issues experienced by siblings, research shows that some may share secondary traits with their autistic brother or sister (2.5 times more likely than those whose are typically developing). Social skills may be difficult. Anxiety may run high. Learning challenges and hyperactivity may be present. Since their symptoms may not present as visibly as their ASD brothers and sisters, these features may be overlooked.
Complicating things is the fact that siblings may be faced with challenges posed by their ASD sibling that they are not developmentally prepared for. They are privy to complex emotions, meltdowns, and possible violent outbursts. And they feel responsible. Responsible for helping out, for making things easier on their parents, for protecting and advocating for their brother or sister, for entertaining themselves, for managing through it all. It’s a lot to carry.
Support can be as simple as having a mentor or close friend to confide in. Just having someone who will listen without judgment can be enormously therapeutic. When looking for educational resources, numerous websites share ideas and strategies, and free materials can be requested through The Organization for Autism Research (OAR) and Autism Speaks. Several books address the sibling perspective (picture books for young kids, memoirs for older) and some parents report that TV shows with central characters that are on the autism spectrum have helped their child make sense of what they are going through.
The most effective approach that siblings with brothers or sisters on the autism spectrum report is having a support group (such as a SIBS group) with other siblings like themselves. Siblings state that these groups have really helped them to normalize their experience and feel accepted and heard. One-on-one therapy has also been shown to have positive results, and family counseling seems to help siblings feel better understood within the family unit and enable them to get their own needs met.
Siblings often report that having special time with their parents and feeling encouraged in their own interests goes a long way towards improving their overall outlook. Less important is the means in which siblings get support, but rather that attention and energy is put into bolstering them.
Having a brother or sister with autism is a challenge unlike any other. While it can be the most difficult to navigate, with proper care and encouragement, it can also be the most rewarding.
Emily Daniels, MSW, RP, MEd is a psychotherapist and social worker in private practice in Fort Collins, CO who supports families with children with disabilities. Emily runs groups for young people on the spectrum and provides individual, sibling, parent and partner counseling using a strengths-based approach. In addition, Emily is the mother of a ten-year-old, super-enthusiastic boy on the autism spectrum.
This article was featured in Issue 86 – Working Toward a Healthy Life with ASD