להיות אחים של ילדים אוטיסטים - Siblings of Autistic Children

להיות אחים של ילדים אוטיסטים - למאמר בעברית

A diagnosis of autism in one of the family members affects not only the child and the parents but also additional circles, the brothers, the sisters, the grandfathers, the grandmothers and others.

The effects have been examined in quite a few studies, including in Israel and include many insights, in addition to recommendations for successful coping, one that makes the complex situation accessible to siblings and safeguards their emotional state.

In general, it is important to provide brothers and sisters of autistic children with a clear and honest explanation, to involve them in a planned way in the treatment when possible, and to intentionally attend to their emotional needs as well.

What should be explained to siblings about autism?

One of the first questions that arises for parents is what to explain to the other children regarding the diagnosis of a family member.

Psychoeducation is the provision of a simple and clear explanation about an emotional or developmental condition, in order to help understand what is happening and how to cope.

It has been found that for most brothers and sisters, psychoeducation reduces anxiety and guilt and improves their attitude toward their sibling on the spectrum.

Key principles:

• Use clear, concrete, and age appropriate language: for example, “Autism is a different way the brain works, and it can make speaking, playing with others, and coping with noise and changes more difficult.”

• Emphasize: “It is not your fault” and “It is not bad behavior”: connect behaviors to communication difficulties, sensory sensitivity, or a need for routine, rather than to meanness or poor upbringing.

• Provide a personal picture: explain how autism looks specifically in the sibling in the family (needs routine, gets startled by noise, needs help with shared play, and so on).

• Normalize mixed emotions: love and pride alongside jealousy, frustration, embarrassment, or guilt, and say explicitly that it is okay to feel several things at the same time.

• Invite questions over time, not just one big conversation: understand that the child will return to the topic at different stages, according to age and development.

  
  

  A simple example for young children: “Your brother has something called autism. It means that his brain feels noises and changes more strongly, and sometimes it is hard for him to speak or play like others. The adults are helping him learn, and it is not because of you.”

להיות אחים של ילדים אוטיסטים - למאמר בעברית

How can we protect the mental health of siblings?

Siblings of autistic children are at a slightly higher risk for anxiety, stress, and emotional difficulties, especially when there is a heavy load at home. Therefore, it is important to pay attention to several principles:

• Personal time with a parent: set times when the parent is available only for the neurotypical sibling, without the sibling on the spectrum, so that they feel important in their own right.

• Make space for all emotions: encourage them to say “It is hard for me,” “I am embarrassed,” “I am angry,” and respond with empathy, not only with messages about being strong.

• Teach coping skills: how to breathe and calm down, whom to turn to when things are difficult, how to ask for help, and how to take a break when there is overload.

• Create space for group support: sibling groups, guided meetings, or even planned conversations with other children in a similar situation can normalize the experience and reduce loneliness.

• Be attentive to signs of distress: a sharp change in sleep, decline in school performance, withdrawal, recurring physical complaints, and consider referral to a professional when needed.

How can siblings be involved in intervention?

Research shows that siblings can learn simple skills and use them to improve play and communication with their sibling on the spectrum, and this can benefit both sides.

Practical and safe guidelines:

• Teach 2 to 3 clear helping skills, how to gain attention, how to offer a choice, how to wait, how to use a picture, gesture, or sign.

• Set a short special play time of 10 to 15 minutes in which the siblings play together while using these skills, with the presence and support of an adult.

• Include siblings in the planning, ask what they enjoy doing together, Lego, ball games, pretend play, and incorporate this into the goals.

• Be careful not to turn the sibling into a little therapist, keep the role defined, time limited, and avoid placing ongoing caregiving responsibility on them.

להיות אחים של ילדים אוטיסטים - למאמר בעברית

Differences in coping between an older sibling, a younger sibling, and a middle child of a child on the spectrum

Within the family structure, each sibling experiences autism through a different lens.

Older siblings tend to take on excessive responsibility and often become a third parent, looking after their sibling’s safety and helping the parents.

In contrast, younger siblings may develop a pattern of excessive self sacrifice, as they learn at a very early age that their needs are secondary to those of the diagnosed sibling, which may lead to self neglect.

Middle siblings, those who are chronologically in between, often find themselves in a double and probably the most complex difficulty. They are expected to show maturity and responsibility toward the younger ones, and at the same time to give in and adapt to the sibling on the spectrum.

The key to healthy coping does not lie in a desperate attempt to divide resources equally, since equality is not necessarily justice.

Instead, one should strive for allocation according to individual need.

Each child needs to feel that they are receiving what they need at that moment, whether it is a deep conversation, separate quality time, or simply recognition of their effort.

This allocation must be dynamic. It changes with age, with periods of crisis or calm, and with the changing capacity of each family member to contain the situation.

This understanding frees parents from the guilt of inequality and allows them to build resilience based on seeing each child as a whole world in their own right.

The challenges and advantages of being a brother or sister of a child on the spectrum

The challenges that it is important to keep a finger on the pulse regarding are:

• A sense of loneliness - The increased parental attention devoted to treatment and meeting the needs of the diagnosed child may at times lead to feelings of loneliness in the sibling who is not diagnosed.

• Early responsibility and excellence - By force of circumstances, one of the processes observed among siblings of diagnosed children is called parenting the sibling. The non diagnosed siblings may become a kind of additional parent at home. They feel a responsibility placed upon them to be fine, to excel in school and in other areas, not to ask for things, not to disturb, not to burden the parents, or even not to argue with the diagnosed sibling, which is very typical between siblings.

• Concerns about the future - Another phenomenon that we identify at later ages is siblings’ concerns about the future of their diagnosed brother or sister. Who will take care of them when the parents no longer can, how will they find work, will they be able to marry and start a family?

Advantages:

• Development of high empathy and social sensitivity - Siblings of children with special needs often develop a strong capacity for empathy toward others. They learn to read nonverbal cues, body language, tone of voice, quiet distress, at a very early stage in life and to develop a high capacity for emotional containment. They understand that every behavior has a reason, even if it appears strange on the outside. This may turn them into friends and partners who are able to deeply understand other people, even without words.

• Tolerance and acceptance of difference as a way of life - For these siblings, difference is part of everyday life at home, and therefore it is not threatening. They develop resilience to social stigma. They see the person behind the diagnosis. In many cases, siblings become ambassadors of tolerance in their environment, at school or in youth movements, when they teach their peer group how to approach and accept someone who is perceived as different.

• Emotional maturity and a sense of competence - Due to the family circumstances, these siblings are often required to show greater responsibility. They learn to regulate their emotions, for example, to remain calm when their sibling experiences an outburst, and to function under pressure. Their maturity is reflected in the ability to distinguish between what is essential and what is secondary. They understand at an early age what the real problems in life are, which gives them a sense of proportion that their peers may not yet have.

• Capacity for emotional containment and cognitive flexibility - Life alongside autism requires constant improvisation and flexibility, changes in plans, adaptations of the environment. Siblings become very creative in finding ways to communicate or play with their brother or sister. This flexibility is a tremendous asset in adult life and in the world of work, the ability to adapt to changing situations and to solve problems without breaking down.

Where is the line between healthy involvement of siblings and excessive emotional burden?

The key word is balance. On the one hand, to share, to teach skills, to give space to be part of the family story. On the other hand, to protect from overload, not to expect the sibling to solve every crisis, not to impose ongoing supervision, and not to turn them into caregivers instead of parents and professional therapists.

להיות אחים של ילדים אוטיסטים - למאמר בעברית

Summary of research based guidelines for working with siblings of autistic children

Aspect	Evidence‑based guidance	Key references
Psychoeducation	Provide repeated, age‑appropriate explanations, normalize mixed feelings, and invite questions.	Understanding the disability reduces anxiety and increases empathy.
Role in treatment	Use structured, time‑limited sibling‑mediated strategies (e.g. play skills), with training and supervision.	The goal is to improve the relationship, not to turn the sibling into a caregiver.
Limits on responsibility	Avoid chronic caregiving expectations; high responsibility is a risk factor for poorer mental health.	Excessive responsibility is a risk factor for poorer sibling mental health.
Family climate	Promote open communication, warm support, and fair attention; these predict better quality of life and resilience.	These predict high quality of life and psychological resilience among siblings.
External support	Offer sibling groups or therapy when there are signs of distress, especially with loaded family psychiatric history.	The peer group (other siblings) constitutes a significant protective factor.

In conclusion, you as parents are the pillars of the family. When you are well, the children will be well.

First and foremost, take care of yourselves and seek the support that is right for you, so that you can also be there for your children.

 References:

Quatrosi, G., Genovese, D., Amodio, E., & Tripi, G. (2023). The quality of life among siblings of autistic individuals: A scoping review. Journal of Clinical Medicine, 12(3), 735. doi: 10.3390/jcm12030735

Rosen, N. E., McCauley, J. B., & Lord, C. (2022). Influence of siblings on adaptive behavior trajectories in autism spectrum disorder. Autism, 26(1), 135-145.

Shivers, C. M., & Plavnick, J. B. (2015). Sibling involvement in interventions for individuals with autism spectrum disorders: A systematic review. Journal of Autism and Developmental Disorders, 45(3), 685-696. DOI: 10.1007/s10803-014-2222-7‏

Walton, K. M., & Ingersoll, B. R. (2012). Evaluation of a sibling-mediated imitation intervention for young children with autism. Journal of Positive Behavior Interventions, 14(4), 241-253. doi: 10.1177/1098300712437044‏

Wolff, B., Magiati, I., Roberts, R., Pellicano, E., & Glasson, E. J. (2022). Risk and resilience factors impacting the mental health and wellbeing of siblings of individuals with neurodevelopmental conditions: A mixed methods systematic review. Clinical psychology review, 98, 102217. https://doi.org/10.1016/j.cpr.2022.102217‏

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