What's It Like Being the Sibling of a Child With Autism?

Parents Can Make It Easier for Siblings of an Autistic Child

Brothers using digital tablet
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Siblings of children with special needs have unique challenges—and siblings of children with autism are no exception. But as with virtually everything related to autism, each situation is unique. For some siblings, life with an autistic brother or sister can be overwhelmingly difficult. For others, it has its ups and downs. There are even some children who see their sibling's autism as a plus rather than a minus.

Despite these differences, however, there are some shared experiences and challenges.

Top Challenges Faced By Siblings of Autistic Siblings

Whether the sibling of an autistic child rich or poor, mellow or anxious, there are certain shared challenges.

  1. Embarrassment. This is one of the most difficult challenges because it's very real—and impossible to avoid. Children, once they are past kindergarten, are judgmental people. And, unlike adults, they are liable to pass judgment out loud, in public. No typically developing child finds it easy or pleasant to hear their peers ask "what's wrong with your brother? he's so weird!" or hear "your sister is a freak!" But it's a very rare child who hasn't heard such comments.  As they grow older, siblings will need to revisit this issue when they bring home friends, find a mate, or marry.
  2. Limited options. When your sibling has autism, the entire family must adjust. This means that the typically developing child will almost certainly have to compromise more, say "no" more often, and bend to their siblings' unusual needs and tastes. For example, typical siblings may have to watch the same movie 50 times, go home from an event before they're ready, or say "no" to throwing a party—just in order to accommodate their autistic brother or sister. As they grow up, siblings may find that their parents have less time or money to help with college, buying a home, "making" a wedding, and so forth.
  1. Greater Expectations. When there is a disabled family member, other family members must step up to the plate—and that includes siblings. Siblings of an autistic child (even when they are very young) are more likely to be asked to manage their own feelings and needs, take on more household tasks, or postpone their own pleasures. As adults, siblings may need to take on more and more responsibility for an autistic sibling as their parents are less able.

    Why Sibling Experiences Are So Different from One Another

    Yes, there are some shared issues—but there are some vast differences among siblings of autistic children. If you bring together a group of typically developing children with autistic siblings, you'll hear some very, very different points of view, concerns, and challenges. Here's why:

    Autistic children are very different from one another.

    Because autism is such a wide-ranging disorder, autistic children and teens may present in completely different ways. As a result, siblings may find it relatively easy or extremely challenging in live in the same household. For example:

    • Sibling A is living with a brother who, though a little "weird," is actually a lot of fun. Sure, he perseverates on Disney characters and has no personal friends—and yes, he occasionally melts down for no obvious reason. But he's kind, caring, and enjoys a lot of the same movies and activities as his sibling. Yes, there are challenges—but they don't feel overwhelming. In fact, they may in some ways be LESS overwhelming than the challenges associated with a bossy, domineering (but typically developing ) brother.
    • Sibling B is living with a sister who is non-verbal, aggressive, and liable to physically destroy objects around the house. At times, Sibling B is truly frightened for his safety. There is no way Sibling B would bring a friend to the house, and no possibility of going out safely and pleasantly with his sister. Life at home is rarely anything like "normal," and the challenges to mental and physical well-being are very real.
    • Sibling C is living with a brother who is brilliant, quirky, and extremely anxious. On the one hand, Sibling C's autistic brother is already programming video games at age 8. On the other hand, this same brother is very anxious, has extreme sensory challenges, and finds it physically painful to be in a mall, a movie theater, or even a family gather. Sibling C is proud of her brother's accomplishments, but can find it difficult to be around her brother, and is never quite sure when he will "explode." As a result, she avoids her brother whenever possible.

    Siblings are different from one another.

    Every child is unique, and individual children's responses to having an autistic sibling will vary too. While one child may find the experience trying and difficult, another may find it rewarding.

    Is it easier to be the younger or the older sibling of a child with autism? There are ups and downs to each.

    • The younger sibling of an autistic child has never lived without autism in her life. On the one hand, this may mean that she finds it easier to manage the challenges that come along with having an autistic sibling. On the other hand, she may find it harder to establish herself within the family as a person with her own needs, challenges, talents, and personality traits.
    • The older sibling of a child with autism may be frustrated when parents' attention is pulled to a younger sibling with special needs. Or, on the other hand, he may find it relatively easy to manage the situation because he has already established his own place in the family, school, and community.

    Different temperaments and personalities can also make a big difference. For some siblings, living with an autistic child can be an embarrassment, while to others it's an opportunity.

    • Sibling X is very sensitive and easily upset. Having an autistic sibling making strange sounds, repeating the same words over and over, and melting down at dinner sends her right over the edge.
    • Sibling Z is empathetic and enjoys finding ways to help his autistic sister to manage difficult situations. Far from feeling overwhelmed, he actually enjoys figuring out how to help his sister to calm herself, express herself, and interact with others.

    Family attitudes and situations are different from one another.

    Autism aside, family attitudes and situations can have a huge impact on children. Add autism into the mix, and ordinary family conflicts, challenges, strengths, and flexibility become a very big deal. For a typically developing sibling, parents' behaviors and emotions can become a source of positivity and strength—or not. For example:

    • Family A includes a child with autism. The child's parents grow closer and work together to find appropriate schools, supports, and funding. When autism becomes overwhelming they respond calmly, handle the situation, and then regroup. At the same time, they work hard to be sure that typically developing siblings are supported at school and in their social lives—even if that sometimes means that friends or public transportation are part of the mix. As a result, the child without autism may learn that challenges can be met and managed, and that adversity should not stand in the way of a full, loving life.
    • Family B includes a child with autism. The child's parents blame one another for the autism or its effects on family life and, as a result, they split up. One parent winds up with custody of both children and is overwhelmed, angry, and frustrated. When autism becomes overwhelming at home, the parent walks out the door or goes into a rage. As a result, the typically developing child grows up in a chaotic situation and may learn that challenges lead to a breakdown in family life.

    Family finances vary.

    Money may not buy love, but it can buy a great many things for a family living with autism. While it's possible to have very little money and still manage autism with few emotional upheavals, it's not easy.

    Poverty and autism can be an incredibly challenging mix. Yes, there are resources available for parents with disabled children—but those resources are difficult to access, frustrating to manage, and may be severely limited depending upon the family's location. Parents who are working hourly jobs don't have the flexibility they need to visit social security and state agencies during weekday hours. Parents who don't have their own computers and internet access don't have the tools they need to research options and find therapies, services, or treatment options.

    Parents with significant funds can essentially buy their way out of some of these frustrations. If they are working at higher level jobs, they have more flexibility to attend conferences, go to meetings, and manage agencies and benefits. If they don't qualify for services or are denied desired educational settings, they can pay for private providers. If they feel overwhelmed, they can often pay for respite care.

    How do these differences affect typically developing siblings? There are a variety of impacts:

    • If money is going to provide services for the autistic child, little may be left for other children. College funds may go toward autism therapy, while second mortgages may pay for special schools or respite care. As a result, the typical sibling may become resentful of both parents and the autistic sibling.
    • If all available time is spent on managing services or caring for the autistic child, the sibling may feel abandoned or neglected. This, too, can lead to resentment or anger.
    • If parents are overwhelmed by the amount of  time and energy required to manage services for an autistic child, they may have little energy left over to help with homework, coaching, chauffeuring, or other ordinary parental activities.
    • Parents who have little time or money many not have the resources they need to stay closely attuned to siblings activities and needs. They may not be aware of problems at school, emotional issues, or potentially risky behaviors.

    Expectations placed on siblings vary.

    What is expected of a child with an autistic sibling? The answer will depend a great deal upon his or her family's size, finances, cultural background, and emotional stability. The answer will also change as the autistic and typical sibling grow older—and parents are less capable of handling things on their own.

    • In a large extended family, there may be multiple individuals able and willing to help care for an autistic child. In a very small family, the typically developing child may be asked to take on significant responsibility for their autistic sibling. This expectation may increase as parents age, to the point where the typical sibling is expected to become the adult caregiver to an adult "child."
    • In a wealthy family, it may be possible to pay for respite care providers or even for live-in support for an individual with autism. In rare cases, this level of support may be provided through agencies. In most cases, however, neither parents nor support staff can provide 24/7 support. Thus, if an autistic sibling needs 24/7 support, there's a good chance a sibling will need to provide it—at least some of the time.
    • In today's American culture, it's not unusual for family members to go their own way. Siblings may move across the country or the globe, while parents continue to care for an adult "child" with autism. In other parts of the world (or in immigrant communities), families stay close to one another. When families stay close, they are more likely to assume at least some responsibility for a child with autism as he grows up.

    How to Help Your Typically Developing Child

    Whatever your circumstances, and whatever the abilities and challenges of your autistic child, it's important to keep your typically developing child's needs in mind. That said, however, it's also important to remember that disability in the family is not always a bad thing. Given the right circumstances, a child with an autistic sibling can gain great personal strengths. Empathy, responsibility, flexibility, resourcefulness, and kindness can all come from the experience.

    Here are some tips for ensuring that your typical child has a positive outcome:

    1. Treat autism as a part of life—something to understand and respond to, rather than something to avoid mentioning or thinking about. Teach all of your children about what autism is, and what it isn't.
    2. Treat all of your children with respect, and model respect for your autistic child.
    3. Be aware that your typically developing child needs your attention and love, and grab any moments you can to listen, share, have fun, problem solve, or just hang out.
    4. Know that your typically developing child is coping with some unusual demands, and recognize the challenges they face and overcome.
    5. Carve out special "just us" times for your typically developing child. You may need to trade off with your spouse, but that can be even better.
    6. Plan ahead for your typical child's needs, and know how you will handle situations before they arise. This applies to small issues (what will we do if our autistic child melts down at the mall?) and big challenges (how will help our typical child manage the costs of college?). You needn't always cater to your typical child's whims, but you do need a plan.
    7. Be consistent and reliable. It may be hard to live with an autistic sibling, but it's much harder to live with chaos or emotional turmoil. Most typically developing children can adjust to challenging situations when they feel safe and cared for.
    8. Listen to your typically developing child, and watch for any signs of anxiety, depression, or risky behavior.
    9. Know when your typical child really needs you, and find a way to be there. This may require calling in an occasional favor or shelling out some extra money from time to time—but it can mean the world to your child.
    10. Get help when you need it. Organizations like Siblings of Autism, the Sibling Support Project, and Sibs Journey are just a few options. Check with local resources to find support groups, respite, and programs.

    Sources:

    Petalas, M.A., Hastings, R.P., Nash, S. et al. Typicality and Subtle Difference in Sibling Relationships: Experiences of Adolescents with Autism . J Child Fam Stud (2015) 24: 38. 

    Schopler, Eric et al, Editors. The Effects of Autism on the Family.  USA: Springer Science & Business Media, Jun 29, 2013.

    Tomeny, T. et al. Emotional and behavioral functioning of typically-developing sisters of children with autism spectrum disorder: The roles of ASD severity, parental stress, and marital status. Research in Autism Spectrum DisordersVolume 32, December 2016, Pages 130–142.

    Walton, K. et al. Psychosocial Adjustment and Sibling Relationships in Siblings of Children with Autism Spectrum Disorder: Risk and Protective Factors. Journal of Autism and Developmental Disorders, September 2015, Volume 45, Issue 9, pp 2764–2778.

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