Learn more about how brothers and sisters of people on the autism spectrum can flourish in their role with proper support.
When you are little, it’s hard to understand why your brother or sister seems to get upset all the time, why it is impossible for him/her to calm down, why he/she hits and throws things for no reason.
Why he/she doesn’t have to finish his/her dinner (or even sit at the table), why he/she won’t play with you, why Mom and Dad always seem to be paying attention to him/her.
As you get older, you might start to that other kids look at him/her funny—that the jumping and flapping around that you’ve always just seen as normal are now embarrassing.
You hate leaving parties early because he/she can’t handle it, and you’ve stopped inviting friends over because it’s just too difficult to explain why your older brother or 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 sibling around to appointments, managing crises, 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 brother or sister about your bad day at school, but you understand that he/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 brother or sister says that cheer everyone up. You may remark on his/her fabulous memory for all things dinosaur, his/her attention to detail, his/her love of cats.
You begin to appreciate how he/she has 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 your sibling to the end of the earth.
You realize that you are the most important relationship in your brother’s/sister’s life and that you will be the person he/she will know the longest.
He/She is your loyal sibling 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 courses 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 times 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 burdens 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 critical needs for these kids.
The good news is, research suggests that with proper support, brothers and sisters of people on the autism spectrum can flourish in their role, help strengthen their families, and become more empathetic, loyal advocates for themselves and those they care for.
Here are fie critical reasons why siblings need support:
1. Siblings have complicated feelings
Many siblings have trouble managing their complex feelings about their brothers or sisters with ASD. Some feel jealousy over the amount of time and attention given to their siblings.
Others express embarrassment, frustration, and resentment about how ASD affects their lives. Jointly, these siblings love their families and don’t want to add to their burdens, 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 of people with autism “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 siblings different. They may have a tough time when their brothers or sisters fail to show interest in them, when difficulty with emotional regulation and sensory issues leads to meltdowns, or when other people seem to judge them.
Additionally, siblings of people with autism are often faced with far more crisis moments than siblings of typically developing brothers and sisters, and they 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 a myriad of 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.
4. Relationships with 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 brothers or sisters longer than anyone else, and may be their lead supporters and advocates 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 ongoing 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 brothers or sisters with autism (2.5 times more likely than those with typically developing siblings).
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 brothers or sisters, 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 kids) and some parents report that TV shows with central characters on the autism spectrum have helped their children 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 experiences 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 enables them to get their own needs met.
Siblings often report that having special time with their parents and feeling encouraged in their own interests go a long way towards improving their overall outlook.
Less important is the means in which siblings get support, but attention and energy should be 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. Websites: www.danielscounseling.com and www.thesociallearningproject.com