Next to the parents, the siblings of a child with autism are probably among those most affected by the autism. Having a child in the family with any sort of disability is going to impact the entire family, and autism is no different!
Having a sibling with autism allows for some special and unique experiences, and these experiences can not only strengthen a relationship but could also cause additional stress for family members. There is not a lot of research in this area, but there are some things that can be done to help minimize the stress on all of the family members.
Parents can help set the tone
How a child responds to growing up with a sibling who has a disability can be determined by many factors which parents do not have a lot of control over: age, temperament, birth order, gender, personality and supports or resources made available to the family. One study shows that siblings of a child with a disability are most impacted by their parents’ reaction, acceptance and adjustment to having a child with a disability. In particular, it was noted that the mother’s mental and physical health is likely the most important factor.
Pros of having a sibling with autism
People who have siblings with disabilities have stated that growing up with a disabled sibling has helped them to develop patience, tolerance, compassion and confidence to handle difficult challenges. The people who report positive relationships with their disabled sibling typically had an understanding of the sibling’s disability, well-developed coping skills, and positive responses from others towards their sibling.
Cons of having a sibling with autism
Because of the nature of autism, there are a number of negative experiences reported by siblings. Many children will experience anxiety, anger, jealousy, embarrassment, loss and loneliness. Autism brings with it natural barriers to a sibling bond; the child with autism has trouble with communication and social skills, which makes it difficult to form a bond that is usually natural between siblings. Whether asked or assumed, many siblings feel that they need to assume the role of caretaker for the sibling with autism. Just like the parents, siblings need information, reassurance and coping skills.
Ways to Help Siblings Cope with Autism
Here are some ways to help siblings cope with autism:
1) Provide ongoing communication that is open, honest and appropriate for the sibling’s developmental level. If a sibling does not know what is going on, they may withdraw or develop inappropriate behavior. Parents may have to come to grips with their own personal feelings before they can effectively communicate with siblings about the situation, but they need to be aware that children often do not ask questions because they do not know what to ask or they may be afraid of hurting the parent by asking.
2) Provide appropriate and ongoing information about the siblings’ autism. If they are not provided with information, they may develop anxiety by thinking that they might “catch” autism like they would catch a cold, or possibly think that they might have caused the autism. A younger child might not be able to understand technical terms, but you can use examples of the sibling’s traits such as fixations or physical abilities. Older children may be worried about things like whether the condition will get worse. Teen or older siblings might be wondering what will happen if something happens to the parents.
3) Treat each child as the unique individual that they are but equally. It is only natural that you will encourage your child with autism to continue to work towards goals with praise and encouragement. But your other child(ren) need to receive the same, even it their achievement might be something that you would expect them to be able to do. Positive reinforcement for all children helps build self-esteem and prevents feelings of resentment.
4) Build one-on-one time into your schedule for your child(ren) without autism. Whether it is 15 minutes every day or an hour every few days or once a week, setting aside time for an individual child where they can interact with you by yourself shows the child that they are equally important to you.
5) Teach the sibling(s) how to effectively interact with the child with autism. Although it might take time, foster this relationship by finding a toy or activity that will hold the interest of each of them, and show the sibling without autism how they can encourage their brother or sister to interact. Also teach the child to provide their sibling with instructions and prompts. Above all, praise the child for their efforts.
6) Give the sibling some choice about how involved they want to be with their brother or sister with autism. Be reasonable — siblings should know that you respect their need for private time and space away from the child with autism. Although parents also need some private time, try not to constantly be dependent on the sibling to assume the care of the child with autism. Instead, try to utilize respite, community resources or willing family and friends when possible.
7) Make sure that the sibling feels that they and their belongings are safe. Some children with autism tend to be aggressive and/or destructive and hard to redirect. Talk to the sibling(s) about asking a parent to help out if this happens and be sure they have a safe area to go to as well as a place where their belongings are not accessible to the child with autism.
8) Help the sibling to feel that the child with autism is being not being given more special treatment than is necessary. Talk to the sibling about any differential treatment and explain how the autism might result in lower expectations in some areas. Older children will be able to understand any differences in treatment better than younger children. But even the child with autism can do chores and simple tasks around the house — do not underestimate their ability!
9) Be patient and understanding as the sibling(s) work through their feelings about have a sibling with autism. Just like a parent, this can take some time to do. If necessary, find a professional to help them. Listen to what they have to say. Let the sibling know that both positive and negative feelings about the sibling with autism are normal and acceptable. Reiterate what they say and verify that you understand what they are telling you. Another important thing is sharing some of your emotion, both positive and negative, so that they know it is not just them feeling that way.
10) Make sure that the sibling(s) without autism have some time to spend as “normal” family time. Use resources such as friends, family or other supports in the community to care for the child with autism so that the rest of the family can participate in activities that would be too much for the child with autism. Time spent together without having to focus on the needs of the child with autism is a much needed break for everyone in the family.
11) Look for opportunities for the sibling(s) to learn that they are not the only ones growing up in a family where there is a member with autism. Maybe there is a sibling or family support group in your area. Or network with other parents who have a child(ren) with autism as well as children without autism. This will provide them with an opportunity to talk to someone else who understands their situation as well as provide some fun activities for them.
12) Help the child learn ways to respond to questions or comments from others who might not understand autism. Provide the sibling with information about autism and role play situations that they could possibly find themselves in. Some parents carry cards with information about autism to hand to people; this would be a great resource for siblings as well.
Siblings have the opportunity to build a life-long bond with each other, but if one of the siblings has autism it is harder to create that bond. Parents can help by being proactive in teaching siblings without autism to talk about their feelings, handle reactions from other people and learning ways to cope with the autism in the family.
What are some ways that you have helped a sibling deal with having a sibling with autism? I would love to hear about it — leave me a comment below!