By Amy Lennard Goehner,
Time Magazine, Dec. 24, 2007
A few months ago, I took my sons to buy shoes. Nate is 14 and autistic. Joey is 8 and “typical.” And I’m the parent — most of the time. Before we got to the store, Joey said to me, “If Nate has a tantrum, I can handle him. You just focus on buying shoes. I’m better at handling tantrums than you. Sometimes you just yell and it makes things worse. No offense.”
None taken. He’s absolutely right.
The “typically developing” siblings of autistic children are, in fact, the furthest thing from typical. Often, they are wiser and more mature than their age would suggest. And they have to be, given the myriad challenges they face: parental responsibility; a feeling of isolation from the rest of their family; confusion, fear, anger and embarrassment about their autistic sibling. And on top of all of it, guilt for having these feelings.
As their parents, there’s a lot we can do to help. For starters, we can educate them early on, by explaining their sibling’s disorder — a conversation that should be ongoing. Dr. Raun Melmed, co-founder and medical director of the Southwest Autism Research and Resource Center in Phoenix, suggests including non-autistic children in visits to the doctor or other autism professionals. Early intervention doesn’t have to be “thought of as being geared only to the involved child,” Melmed says. In his office, Melmed reassures siblings that “other brothers and sisters have negative and confusing thoughts about their [autistic] siblings. That is common.” He also instructs parents to reaffirm that message at home. “Parents need only acknowledge to their healthy children that they know what they are going through and that negative feelings are normal,” he says.
A great way for kids to feel “normal” is to meet other siblings of autistic children, which they can do at sibling workshops. At the Kennedy Krieger Institute for children with developmental disabilities in Baltimore, social worker Mary Snyder-Vogel runs a program called Sibshops. “The workshops give these kids the opportunity to realize they’re not alone,” Snyder-Vogel says. “[We play] a lot of games that help them interact and problem-solve with peers. Kids don’t even realize they’re getting support.”
At a recent Sibfun workshop at the Jewish Community Center on Manhattan’s Upper West Side, therapists used puppet shows to illustrate issues that are common among siblings of special-needs kids. When asked what they thought the puppets were feeling, the children in the audience needed no prompting, immediately shouting out words like sad, disappointed and jealous.
Siblings will commonly have negative feelings — some might never connect or want to connect with their autistic siblings — but the good news is that typical siblings often turn out to be more compassionate and caring than average. “These siblings have seen what it’s like to have a hard time in life,” says Sandra Harris, executive director of Rutgers University’s Douglass Developmental Disabilities Center, a program for people with autism spectrum disorders and their families, and author of Siblings of Children with Autism: A Guide for Families (Woodbine House).
There are many other, more specific challenges that affect siblings of special-needs kids — and many of them apply to sibling relationships of every kind. Here are some of the issues that most frequently confront typical siblings — and their families — with advice from professionals.
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.”
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!
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. ”
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.”
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