What to say to your daughter when she wants to know about her brother's disability.
Helping her Understand Autism
Q. I have a 2-year-old son who was recently diagnosed with autism. He has severe and profound developmental delays, and while we plan on giving him as many services as he needs to have a full life, my husband and I understand he'll never be a typically functioning child or adult.
What should we be saying, if anything, to our 5-year-old daughter who already is asking why Brice won't play with her? Does she need to know the extent to his disabilities now? Is there a timeline we should consider for giving her details?
A. Understanding the complexities of autism, and the resulting developmental delays, are difficult for most people to understand. Therefore, it will be difficult for your 5-year-old to fully grasp your son's disability. That being said, it's important for her to receive information about her brother's atypical behavior. Offer information to her in sound bites rather than long dissertations.
The most common condition associated with autism is impaired social reciprocity. This means that when your daughter tries to play or talk with him, he's likely to be unresponsive. Therefore, your daughter will probably feel frustrated when she tries to interact with her brother, because she most likely won't receive a response in return. That's when you'll need to say something to the effect of, "Your brother is different from other children. He likes to play by himself rather than with others."
Behaviors Associated with Autism
There are many behaviors associated with autism that will appear strange to your daughter and others. He may:
- Exhibit repetitive behaviors, doing the same thing over and over again
- Display limited imagination or play behavior
- Demonstrate ritualistic behavior, insisting that events occur exactly the same way
- Show little emotion
- Reveal an uncommon preoccupation with a particular item
- Exhibit complex body movements, flicking hands or spinning continuously
- Habitually touch, spin, or smell a certain object
- Insist on following strict routines
- Demand that aspects of his environment be arranged in a certain order
- Communicate in a limited or abbreviated fashion
- Avoid making or sustaining eye contact
- Speak with inappropriate volume, pitch, rate, rhythm, or tone
- Repeat a speech pattern
- Be incapable of "reading" the social situation or participating actively in it
Of course, there is much variation in the behaviors of autistic children. When your son exhibits any of these behaviors, your daughter will likely appear perplexed. By age 5, she knows that people behave in certain ways. Therefore, her brother's behavior will appear peculiar to her. That's when you'll need to explain that his behavior is typical of children with autism. You may need to repeat these explanations many times, and gradually, coach her to respond appropriately.
Let Her Be an Advocate
One mom of an autistic son explained how difficult the condition was on the older sister. Not only was his behavior disruptive, but he took up most of his parent's time and energy. The older child felt neglected. She would retreat to her room to get away from the chaos that she felt her younger brother created.
The more understanding and information you can provide your daughter about her brother -- without neglecting her or expecting her to be a parent to this child -- the better. In time, she'll learn to be an advocate for him, explaining his behavior to others.
Jan Faull, MEd, is a veteran parent educator and the author of four parenting books, including Darn Good Advice -- Baby and Darn Good Advice -- Parenting. She writes a biweekly parenting advice column for this site and a weekly parenting advice column in the Seattle Times. Jan Faull is the mother of three grown children and lives in the Seattle area.
Originally published on HealthyKids.com, November 2006.
The information on this Web site is designed for educational purposes only. It is not intended to be a substitute for informed medical advice or care. You should not use this information to diagnose or treat any health problems or illnesses without consulting your pediatrician or family doctor. Please consult a doctor with any questions or concerns you might have regarding your or your child's condition.