Support for Parents and Siblings

Supporting Your Child who has a Sibling with Autism

Like any sibling relationship, being the sibling of an individual with autism is a simultaneously rewarding and challenging role. Children and teens who are both older and younger siblings of individuals with autism may find themselves in situations that their peers with typically developing siblings do not face, with feelings their peers do not experience. When talking to your child or teen, it’s important to acknowledge their feelings without judgment. Help your child to understand that any feelings they have, towards their sibling or their own position in the family, are not good or bad, they’re just feelings and all feelings are normal.

Common feelings faced by many family members of individuals with autism are:

  • Grief, particularly over the loss of the previously envisioned future with the individual who has autism
  • Inadequacy, feeling overwhelmed by the situation and hoping someone else will come in to “fix” the situation which feels impossible to change
  • Anger, often associated with a violation of expectations. Family members of individuals with autism often feel angry that there isn’t a “cure” or “solution” which can be offered to their loved one, that there is a loss of freedom and independence when a family member has special needs, and very often that their loved one has to struggle in ways other individuals don’t.
  • Guilt, most often felt by parents who may feel they are somehow to blame for not being able to alleviate their child’s struggle. Siblings may also feel guilty because they don’t live with the particular challenges their sibling with autism lives with.
  • Vulnerability, a feeling generated when we realize we are not invincible. Older siblings of individuals with autism may be worried about their own chances of having a child with autism.
  • Confusion. When a family member is first diagnosed, confusion can arise about what to expect, what is true, and who to believe. There is so much information floating around about autism, it’s hard to know where to look.

Resources for Children

Having a sibling who has autism can be difficult for younger children to understand. Children in preschool and the lower elementary school grades often have questions about why their siblings act in certain ways, or why their siblings may not be able to do things that they can do. Often children in the lower grades may actually ask questions that they know the answers to, simply because they are trying to start a dialogue. It is important for parents to answer their children’s questions in simple, easy-to-understand, non-threatening language. Many picture books have been written to foster such conversations which can be difficult to have.

Some great picture books for young siblings:

  • Ian’s Walk: A Story about Autism, by Laurie Lears
  • My Brother Charlie, by Holly Robinson Peete
  • Looking after Louis, by Lesley Ely
  • All About My Brother, by Sarah Peralta
  • Everybody is Different: A Book for Young People Who Have Brothers or Sisters With Autism, by Fiona Bleach
  • Leah’s Voice, by Lori Demonia

Books for classmates about being a friend to someone with autism:

  • The Bully Blockers: Standing Up for Classmates with Autism, by Celeste Shally
  • A Friend Like Simon, by Kate Gaynor
  • My Friend with Autism, by Beverly Bishop
  • My Friend Has Autism, by Amanda Doering Tourville
  • I See Things Differently: A First Look at Autism, by Pat Thomas

Click here for some suggestions on how to be a friend to someone who has autism.

Support for Teens

Simply being in middle school is often a challenge in and of itself. Being an adolescent with a sibling who has autism can be challenging in ways parents do not understand. Many adolescents are concerned with the way their peers view them, and may be embarrassed about their sibling, or their sibling’s behavior. Parents should remind their adolescents of their sibling’s unique abilities and positive attributes, and help adolescents to come up with answers to any questions peers may have.

Understanding Your Child’s Feelings

In order to foster acceptance and understanding, it is important for parents to inform children of their brother or sister’s condition and explain what it means to have an autism spectrum disorder. Even though a child may understand that their sibling has autism, it may be a source of stress.

Several factors can contribute to stress in a sibling of an individual with autism, including:

  • Feeling embarrassment around peers
  • Experiencing jealousy about the amount of time parents spend with their brother or sister
  • Feeling frustration over not being able to engage or the difficulty of building a relationship with their brother or sister
  • Being the target of aggressive behaviors
  • Attempting to compensate for the deficits of their brother or sister
  • Being concerned about parents’ stress and grief
  • Being concerned about their role in future caregiving for their sibling

Setting aside a dedicated time for each child helps all of the children in the family feel loved and understood, while reinforcing the family bond.

Resources for Family Support:

Family Voices
2340 Alamo SE, Suite 102
Albuquerque, NM 87106

PACER Center (Parent Advocacy Coalition for Educational Rights)
8161 Normandale Blvd
Minneapolis, MN 55437

Parental Educational Advocacy Training Center (PEATCO)
6320 Augusta Drive, Suite 1200
Springfield, VA 22150
phone: 703-923-0010/ para espanol: 703-569-2000

Parent to Parent
c/o Beach Center on Families and Disability
The University of Kansas
3111 Haworth Hall
Lawrence, KS 66045

Sibling Information Network
The A.J. Pappanikou Center
249 Glenbrook Road, U-64
Storrs, CT 06269
phone: 860-486-4985

The Sibling Support Project
c/o Donald Meyer, Director
The Arc of the United States
6512 23rd Avenue, NW Suite 213
Seattle, WA
phone: 206-297-6368

Team Advocates for Special Kids (TASK)
100 Cerritos Avenue
Anaheim, CA 92805
phone: 714-533-8275

Search for Resources:

Parents and community members looking for evidence-based information to help them tackle specific issues, from toilet training to medications, now have a free online service that uses a family-friendly keyword search. The Autism Information Database (AID) has been developed by Canadian not-for-profit, ACT – Autism Community Training. ACT pre-screens links to reputable online resources from around the world so individuals can find reliable online information and training resources in multiple languages on the AID. You can explore the searchable database here.