Sibling Needs

Sibling Needs — Helpful Information for Parents

By Derenda Timmons Schubert, Ph.D.

Pacific Northwest Children’s Services

I. Developmental Considerations

What do you tell…

Preschoolers (before age 5)

Children in this age group are unable to articulate their feelings about things, so they will likely show their feelings through behaviors. They will be unable to understand the special needs of their sibling, but they will notice differences and try to teach their brother or sister. Children of this age are likely to enjoy their sibling because they have not learned to be judgmental, and their feelings toward their siblings will likely be linked to “normal” sibling interactions.

Elementary School Age (6-12)

These children start venturing out into the world and become acutely aware of the differences between people. They have the ability to understand a definition and explanation of their sibling’s special need as long as it is explained to them in terms they can understand. They may worry that the disability is contagious or wonder if something is wrong with them, too. They may also experience guilt for having negative thoughts or feelings about their sibling as well as, guilt for being the child who is not disabled.

Some typical responses of children this age are to become OVER helpful and well-behaved or to become non-compliant in order to obtain a parent’s attention. Throughout this age span, the children will have conflicting feelings about their sibling. This happens in sibling relationships that do not include a disability, too.

Adolescents (13-17)

Adolescents have the capability of understanding more elaborate explanations of the particular disability. They may ask detailed and provocative questions. The developmental task of adolescence is to begin discovering oneself outside of the family. At the same time, conformity with a peer group is important. Therefore, for children this age having a sibling who is different MAY be embarrassing in front of friends and dates. They may feel torn between their desire for independence from the family and maintaining a special relationship with their sibling. They may resent the amount of responsibility, and they may begin worrying about their sibling’s future.

A. Educate Your Children

• Provide information to the child about how the condition is evaluated, diagnosed, and treated.
• The children need to know what the disability is and what to expect
• Explain strengths and weaknesses of the child with the disability
• Explain ways to interact with sibling
• Explain ways to help sibling

B. Balance Time Spent with Children

• Encourage child to have activities unique to him/her
• Parental participation in activities outside the disability world/community.
• Parental recognition of child’s strengths and accomplishments

C. Open Discussion

• Open discussion in the family should exist where members’ positive and negative feelings are expressed
• Discussion of ways to cope with stressful events such as peers and public reaction, as well as, unexpected changes in family plans, extra home responsibility

D. Sibling Groups

• Participation in a group for siblings allows the children to meet others who are in the same circumstance
• Provides children with the chance to discuss feelings which may be difficult to express to the family

Siblings of children on the autism spectrum have a special role to play within the family and community. As such, extra care needs to be taken to honor and support them. Towards that end, many organizations have started groups expressly for siblings of children with autism. Champion Autism is currently forming social sibling groups with The Crimson Research & Treatment Center. Contact us at info@biancanpo.org for more information on this FREE PROGRAM FOR SIBLINGS. 

II. Warning Signs

Depression

• change in child’s sleeping habits
• change in child’s eating habits
• sense of helplessness/hopelessness
• continued sense of irritability
• mentions hurting self (i.e. “i wish i was dead”)
• difficulty making decisions or concentrating
• lack of pleasure in activities
• social withdrawal
• low self-esteem

Anxiety

• excessive worry
• increased energy level without a purpose
• tearful at slightest frustration
• has difficulty separating from parents
• sleeping problems or change in sleeping habits
• changes in eating habits
• school phobia
• worry about health or well-being of family members
• somatic symptoms (i.e. stomachaches and headaches)
• perfectionism

If your child displays a number of these symptoms for a prolonged period of time (2 weeks or more), it may be advisable to discuss the situation with the child’s pediatrician or a local mental health professional. Contact us at info@biancanpo.org if you would like help finding the best resources for your children.

Solving The Sibling Dilemma

Challenge #1: “Why won’t he play with me?”
For younger siblings of autistic children, one of their first doses of reality usually comes when their older brother or sister won’t play. “The child on the [autism] spectrum may seem indifferent or have a meltdown when the sibling tries to interact,” says Rutgers’ Harris.

Seven-year-old Adam, whose autistic brother Jacob is 11, says, “I can’t really play games with Jacob like I can with my cousin Eric [also 11]. Jacob likes to play games on the computer — but by himself, not with me. He gets too angry if he loses and then doesn’t want to play.” Adam’s father, Paul, says soberly, “I’m sure Eric represents the brother Adam might have had.” (Read “A Link Between Autism and Testosterone?”)

Solution: Find common ground
Parents can start by telling the typical sibling that his brother or sister “is doing the best he can, and here are some things you can do with him,” says Judy Levy, director of social work at the Kennedy Krieger Institute. “Maybe in the future he’ll be able to learn to play with you in other ways, but right now this is what he can do.”

Harris encourages parents to “find ways in which the siblings can relate [or] share an interest.” That can be something very simple, as Elliot learned at an early age. “It turns out my brothers [Benjamin and Aaron] are really ticklish,” says Elliot. “Tickling was a good way to bond with them, and for them to show affection back by laughing and wanting it again.” (And again and again — and again.)

Challenge #2: “It’s not fair!”
Every parent has heard his or her child say, “It’s not fair!” But for families with autistic and typical siblings, “not fair” is the reality, when it comes to one child being treated differently from the other. Martin Bounds has one autistic child, Charlie, 13, and one typical child, Alex, 15, about whom Bounds says, “He’d get very upset when he would bump his knee or complain of feeling sick. He thought we weren’t sufficiently concerned about him, in the spirit of ‘I could be over here dying, and all you care about is Charlie.'”

That may be overstatement, but such sentiments often stem from legitimate gripes. Bounds recalls when he and his wife attended an important fund-raiser for Charlie three years ago, on the same day Alex rode in an annual bike race. “Alex won the race for his age group and was really upset when we were not there to greet him at the finish line,” says Bounds. “As much as you try to balance schedules, as parents of an autistic child, you have to basically accept that you are going to have moments when you feel you have cheated your other children, and those moments are awful.”

Solution: Create special time
Harris urges parents to set aside alone-time with their typical kids every week. “Private time can even [include] riding in the car to pick up the laundry,” she says, “but since [the child is] with Daddy, [he or she is] the focus of his attention.”

Some kids, like Elliot, develop new hobbies as a way to spend time with a parent. “Gardening was something I could do with just my mom — it was never easy to get my mom to myself,” he says. Elliot began gardening five years ago; he’s now a junior judge at flower shows and grows about 330 varieties at home, including the 170 seedlings he has hybridized.

For single parents, however, eking out one-on-one time can be a daunting task. As a widowed mom, I know firsthand — we do the best we can with the time we have. Single dad Ron Barth says his autistic 9-year-old, Daniel, “dominates everything, so I have to make special moments with Nicole [age 15], like taking her shopping — without Daniel.” But, says Barth, “There aren’t enough of those moments.”

Challenge #3: “I’m scared!”
Some autistic children are aggressive, which can be scary and dangerous, especially for younger kids. And parents can’t possibly keep an eye on their kids every second — which is about the amount of time it took for one child I interviewed to get squirted in the eyes with Windex by her younger autistic brother. (She survived just fine.) Even my son Nate, who isn’t aggressive but is twice the size of Joey, often hugs Joey — tight. Very tight. Around the neck. When Joey yells “MOM!” I’ve learned to tell the difference between Mom, can you help me find my Gameboy? and MOM, he’s choking me! (Read “Fragile X: Unraveling Autism’s Secrets.”)

Solution: Find a safe haven
“I tell parents to have a ‘safe place,’ usually the child’s room, where the typical child can go while an adult handles the behavior problem,” says Harris. “Then, as soon as they can, the parents should comfort the typical child and help him or her understand what happened.”

Harris also suggests that parents develop an “intervention plan” to teach the child with autism alternate behaviors — such as asking to be left alone, or using words, cards or a special gesture — when he or she feels upset. “Kids with autism can learn to go their room, sit in a beanbag chair, or do something else that helps them calm themselves,” says Harris.

Challenge #4: “He’s so embarrassing!”
It’s common for siblings to feel embarrassed by their autistic brother or sister’s behavior in public, or to be reluctant to bring their friends home. Kelly Reynolds, 21, says it can be difficult introducing her autistic brother, Will, to her friends: “It’s hard to have a young child in an older kid’s body. [Will] may go up to one of my girlfriends and sit on her on the couch — which probably would have been cute when he was five years old but he’s 17 now,” Reynolds says. “That can be hard because you can tell when someone feels awkward or scared or thrown off.”

Solution: Encourage honesty — and laugh
“Interestingly, a lot of these [typical sibs] are more outspoken,” says Levy of the Kennedy Krieger Institute. “They’ll go up to people and say, ‘Yes, that’s my brother. He has special needs. Do you have any questions?'”

My son Joey is one of those kids. When he was 6, we were at a bus stop when Nate started jumping up and down and making weird noises — just being Nate. When Joey’s friend started making fun of Nate, Joey got right in her face and said, “Do NOT make fun of my brother again! Everybody learns differently.” They were my words coming from Joey’s mouth.

Several parents I interviewed said a sense of humor is key. “Your typical child can see the humor in the actions of his autistic siblings,” says Bounds, father to Charlie and Alex. “It’s okay to talk about his or her ‘weird brother’ in a way that signals that you both know this isn’t normal.”

When Nate does something bizarre in public, which is just about whenever he’s in public, Joey and I often give each other an Oh, my God! look and roll our eyes, which sort of says, “We’re in this together.”

Challenge #5: “I feel like the parent.”
Angela Bryan-Brown, 15, says she often feels like a parent to her 14-year-old brother Alasdair. “You don’t have a choice,” says Angie. “You’ve got to help out, and your parents can only do so much. They’re so stressed out.” Angie’s mom Florie Seery refers to Angie as “the third parent in the house” and “an old soul,” a phrase I’ve heard often from other parents.

Elliot says of his siblings’ disorder: “Even though I’m four years younger, it places me in the position of being the older brother.” (Read “New Clues to Autism’s Cause.”)

Solution: Let sibs be children too
“It’s a challenge for children to feel that sense of responsibility for their sibling,” says Harris. “A wise parent works hard to temper that and to make the responsibilities fitting to the age of the siblings. An older sister can keep her brother entertained for half an hour because an older sister would typically do that to help out — but she’s not a parent.”

For young siblings, Harris suggests counseling them: “‘It’s wonderful to care about your brother, but you’re my little boy too. Because your brother has trouble learning sometimes, he might need help from you, but you’re not his mommy or daddy. We will take care of him when he needs help.’ That kind of message reaffirms one’s love and lifts that burden.”

Challenge #6: The holidays
“Attending loud, busy social gatherings with new sights, sounds, smells, intrusive relatives and strange places overwhelms the best of us, let alone those with sensitive sensory systems,” says Dr. Raun Melmed of the Southwest Autism Research and Resource Center. “Of course, when the child gets overwhelmed and melts down, so do the siblings and parents.”

“In short, holidays suck, especially the ones you spend outside your own home,” says dad, Bounds. “They’re full of the most dreaded thing in an autistic life — unstructured time. People get together with relatives and friends and talk — which is sort of hard to do when your child has your sister-in-law’s cat by the throat and is about to put him in the food processor.”

Solution: Ask family members to help
Harris suggests that parents “create a rotating team of adults. Each person spends a half-hour with the child, so that parents and siblings aren’t trapped, and the child doesn’t have to be exposed to the chaos of the party. Cousins and aunts can take a turn.”

Siblings, however, should be spared. “The typically developing kid wants the holiday to come. She’s off from school, she’s getting her present and she can’t really enjoy that” if she’s expected to take care of her autistic brother or sister, says social worker Snyder-Vogel.

Challenge #7: In adulthood, the sibs will become “parents”
Someday, inevitably, the sibling of an autistic child will most likely take on the role of guardian and advocate. “You’re basically at some point going to be their parent,” says Kelly Reynolds, 21. “Anyone I want to marry has to take that into account. In some ways you kind of feel like you already have a kid. … For me, it’s kind of a deal-breaker when someone can’t really get along with my brother. He’s such a big part of my life.”

Solution: Discuss future plans with adult children
Parents should talk about financial plans and any care arrangements that have been made, once typical siblings are old enough, says Harris in a recent article for the Autism Society of America. But this isn’t a discussion to initiate with younger children — unless they bring the topic up on their own.

Many of the children I interviewed showed deep concern for their autistic brothers and sisters. And nearly all of the professionals and doctors I talked with said that a disproportionate number of their students and residents were siblings of people with autism. “I’m very interested in trying to help find a cure,” says 15-year-old Elliot, who closely follows news about the disorder. “I’d just like to get a neat little pill someday for my siblings that they can pop in with their apple juice and hopefully be normal.”
Read more: http://www.time.com/time/health/article/0,8599,1698128,00.html#ixzz1cJPPa8bZ

Siblings of Children with Autism Carry Special Burdens

Posted on April 19, 2011 by Susan Moffitt

When a child has autism, most of the family’s energy and resources go towards that child. Siblings carry their own special burdens as they experience all the hardships and stress attendant with autism, yet may feel they get less of their parents’ attention. More is expected of them than their sibling and they can experience this to be elementally unfair. They are party to people’s hostile reactions when their brother or sister causes a scene in public and may resent the negative attention and even feel embarrassed or pained.

Often, the neurotypical child is the person in the family better able to calm their sibling who is melting down or help them navigate their world. Although both my twins are on the autism spectrum, one has less severe problems than the other and I habitually looked to him for help with his brother. From a very tender age, it was obvious that the twin connection superseded the parent connection. I considered it a blessing and tried very hard to keep both sons’ needs in balance, but truthfully, my more stable son was rendered a “little adult,” despite his own challenges. He was the eye of every storm and I looked to him often.

Parents should give their weight-bearing child the chance to express what it’s like for them to have a brother or sister with autism. These siblings often hide their concerns and become the overachiever or the “easy” child who harbors feelings of invisibility within the family. There is a danger that just like other caregivers who sacrifice too much, they may be giving up their childhood or missing opportunities to just be a kid. Making special one-to-one time expressly for your neurotypical child goes a long way towards letting them know that they are not losing out to the more needy brother or sister.

Siblings have a huge influence on children with autism. In fact, a groundbreaking study published in the latest edition of the Journal of Child Psychology and Psychiatry suggests that the influence of siblings actually determines the social behavior of children with autism. Children with autism who have younger siblings demonstrate a significant advance between the ages of three-to-five years in “theory of mind,” or the ability to perceive that everyone has their own intentions, beliefs, desires and emotions. Normally, even the highest-functioning child does not score well in theory of mind before age thirteen, yet these very young children excelled.

Unsurprisingly, siblings of children with autism are often deeply compassionate and wise beyond their years.

As a part of Autism Awareness Month,  we sponsor school events where siblings explained autism from their perspective to their classmates, serving as both ambassadors and liaisons between the autistic and neurotypical worlds. Contact us at info@biancanpo.org for more information.