Siblings of children with autism are in a unique position. They face challenges (similar to those that parents encounter), but at a time before they’ve developed appropriate coping strategies. As a result, they need support to ensure that they’re informed, feel respected, and know how to be compassionate advocates for their brothers and sisters on the spectrum.
According to Brooke P. Juneau, in her blog post for the North Carolina Autism Society, siblings of people with autism may not share their brothers’ or sisters’ social or cognitive challenges, yet in many ways, they have special needs of their own. As with other family members, the realization that a sibling is autistic can trigger feelings of grief, sadness, guilt, or fear. Young children may worry that they did something to cause their sibling’s autism – or that they might become autistic themselves. Older children may feel fiercely protective of their sibling – or embarrassed when unusual behaviours erupt in public places. Siblings may experience anger if they, or their parents, become targets of unsafe behaviour. Some siblings may feel pressure to be “the easy one,” sensing that their parents already have too much to handle. Others may misbehave in an effort to gain their fair share of the family’s attention.
Of all the family members touched by ASD, siblings will have the longest relationship with an affected brother or sister across the lifespan. Many anticipate caregiving for their siblings after parents grow elderly or pass away. This responsibility can significantly impact a sibling’s own plans for the future. It is natural for siblings to alternate between feelings of pride and resentment about the critical role they play.
She offers some tips to support the emotional well-being of siblings of all ages:
“Autism” is not a dirty word.
When we talk openly about a loved one’s spectrum disorder, we send the message that there is nothing shameful about having a disability. Both children with autism and their siblings benefit from conversations about what autism means; the challenges that come with ASD; and the special abilities that can also accompany the diagnosis. Explain to younger children that autism is a lifelong disability that is part of a person from the time they are born. They may need reassurance that they did not cause a sibling’s autism, and that ASD is not something they will “catch” or develop out of the blue. As children get older, welcome them to ask questions – even those that are uncomfortable – to help them understand their brother’s or sister’s behaviour, and what interventions are in place to address challenges.
Set aside special time just for sibs.
The care of a child with autism is sometimes stressful and demanding. Overwhelmed parents may not realize how much of their time and energy is devoted to their child with special needs, at the expense of other kids in the family. There may be places or activities that are beloved by a neurotypical child, but intolerable to their brother or sister with autism. Setting aside one-on-one time with siblings to do things they enjoy builds strong bonds and positive self-image.
It’s OK to be angry.
Even the most loving and understanding of siblings will sometimes feel mad, humiliated, or resentful of a brother or sister with special needs. The desire to have a “normal” family that looks like any other is a natural part of child development. So are sibling rivalries and arguments! As parents, we often emphasize the positive in an effort to paint our children with autism in the rosiest light and can feel extra-protective when sibling quarrels flare up. It may seem as though giving your “sib” space to openly vent their frustration will encourage negative feelings, making matters worse.
Make sure others acknowledge your typically-developing child.
So often, a child with autism may be the first thing well-meaning friends, teachers, and neighbours ask parents about. Siblings may come to feel less interesting or important to those in the family’s periphery, simply because their interests and activities are more predictable. Young children may wonder why therapists visit their home, offering toys, games, and special attention to their brother or sister. As siblings grow older, they may resent being left out of conversations about their brother’s or sister’s progress, or their plans for the future; after all, their own lives may be impacted by the decisions a sibling’s support team has made! Making sure that siblings receive special acknowledgement by those involved with your family can go a long way toward helping them feel positive about themselves and their role – and so can including them, where appropriate, in conversations about future planning.
A more scientific approach
In this comprehensive research article for the Indiana Resource Center for Autism, Marci Wheeler explains that a child’s response to growing up with a brother or sister with a disability is influenced by many factors such as age, temperament, personality, birth order, gender and parental attitudes. Parents have little control over many of these factors but do have control of their attitudes and the examples they set. Research by Debra Lobato found that siblings describing their own experiences consistently mentioned their parents’ reactions, acceptance and adjustment as the most significant influence on their experience of having a brother or sister with a disability (Lobato, 1990).
It is also important to note from Lobato’s research that a mother’s mental and physical health is probably the most important factor in predicting sibling adjustment regardless of the presence of disability in the family. Positive outcomes that siblings frequently mention are learning patience, tolerance, and compassion and opportunities to handle difficult situations. These opportunities also taught them confidence for handling other difficult challenges. Research by Susan McHale and colleagues found that siblings without disabilities viewed their relationship with their brother or sister with autism as positive when: 1) they had an understanding of the sibling’s disability; 2) they had well developed coping abilities; and 3) they experienced positive responses from parents and peers toward the sibling with autism (McHale et al., 1986).
There are negative experiences of having a sibling with an autism spectrum disorder that should be acknowledged and addressed. Anxiety, anger, jealousy, embarrassment, loss, and loneliness are all emotions that children will likely experience. Because of the nature of autism spectrum disorders there are barriers to the sibling bond that can cause additional stress as a result; communication and play can be difficult between siblings when one has an autism spectrum disorder. Often the sibling without the disability is asked to assume or may on their own feel obligated to assume the role of caretaker. It is best to be proactive in addressing these issues. Siblings are members of the family that need information, reassurance and coping strategies just as parents do.
Each family is unique. There are various family structures such as single parents, multi-generational households, and households with other significant stressors including more than one member with a disability. Each family has its own beliefs, values, and needs. Regardless of family circumstances, the suggestions for parents discussed here should be viewed as supportive strategies that can be considered to assist siblings in coping with having a brother or sister with autism.
From her research, Wheeler lists the twelve important needs of siblings:
- Siblings need communication that is open, honest, developmentally appropriate, and ongoing.
- Siblings need developmentally appropriate and ongoing information about their siblings’ autism spectrum disorder.
- Siblings need parental attention that is consistent, individualized, and celebrates their uniqueness.
- Siblings need time with a parent that is specifically for them.
- Siblings need to learn skills of interaction with their brother or sister with an autism spectrum disorder.
- Siblings need to be able to have some choice about how involved they are with their brother or sister with an autism spectrum disorder.
- Siblings need to feel that they and their belongings are safe from their brother or sister with ASD.
- Siblings need to feel that their brother or sister is being treated as “normal” as possible.
- Siblings need time to work through their feelings with patience, understanding, and guidance from their parent(s) and or a professional, if appropriate.
- Siblings need opportunities to experience a “normal” family life and activities.
- Siblings need opportunities to feel that they are not alone and that others understand and share some of the same experiences.
- Siblings need to learn strategies for dealing with questions and comments from peers and others in the community.
It is quite a lengthy list, and the full article can be read here.
Siblings have a unique bond with each other that is usually lifelong. Having a sibling with autism influences this bond and will affect each sibling differently. As a parent of a child with autism, you can directly influence and support positive relationships for siblings. Just as you have learned to be proactive for the sake of yourself and your child(ren) with autism, siblings need you to be proactive in helping them, too.
Some more resources:
The Organization for Autism Research offer a fee e-book, Life as an Autism Sibling: A Guide for Teens, that can be downloaded here.
The Center for Siblings of People with Disabilities has a collection of books, podcasts and downloadable resources available to assist siblings of children with autism.
OneOp collected a list of available resources on the internet to assist families and siblings.