Brothers and sisters of children with ASD have special needs. Being sensitive to these needs will help all your children make a positive adjustment. Many studies have documented the concerns of brothers and sisters of children with ASD. Often they feel a sense of loss and loneliness when their parents’ attention is consumed by their sibling with ASD. They may also experience feelings of resentment toward their sibling with ASD, and older children will feel guilty about feeling resentful.
Schedule Time to Spend Exclusively with Each of Your Other Children
It helps a sibling to spend some time alone with parents. This special time can be as simple as going to the store, washing the car, having a bath, or reading a book together. Use the time to listen to this child—to hear about friends, school, interests, problems, feelings. Let the sibling know how special he is to you and how much you enjoy time with him. Also, let him know that you know the child with ASD takes a lot of your time and attention, and that the sibling can tell you if he needs some time with you. Younger siblings may not be able to ask for time and attention, but they express it through their behavior or misbehavior (e.g., crying, clinging, developing fears, or misbehaving to get attention). The important thing during these times is for a sibling to feel that this is his special time, when your attention is focused on him.
Teach Skills That Will Help Siblings Interact in Pleasurable Ways
with Their Sibling with ASD
Siblings may feel bad or rejected and unloved when their sibling with ASD won’t play with them. Fortunately, research has shown that siblings can be taught skills that will help their relationship with the child with ASD. This can be helpful for all of the children. Help each sibling understand that ASD makes it very hard for children to learn to play, and that the sibling with ASD does not know how to play now, but that over time the child will learn. Teach siblings how to give simple instructions that their sibling will follow, how to engage in simple games, and how to reward the child with ASD for appropriate play. Be sure to help the child with ASD follow through. These simple interactions help promote a bond and social relationship between siblings. “Parallel play” activities where the siblings are all playing with similar materials—at the kitchen table with art materials, or puzzles, or snacks, should be encouraged. Be sure to include activities such as swinging outside on swings, playing chase, or watching a DVD together. These activities don’t require the child with ASD to share or to engage in complex, back-and-forth interactions.
Talk about It!
Studies have shown that siblings benefit from talking openly and frequently about a child’s ASD. A sibling may not understand why the child with ASD does not play and talk with her. When you explain what ASD is and how it affects social and language development and other behavior, the sibling will be less likely to interpret the child’s behavior as dislike. As the sibling gets older, her understanding and perspective will become more like yours, with more and more questions and worries, so it is important to have an open line of communication about ASD with your children. Use words and concepts that your children can understand. Provide simple explanations and phrases that a sibling can use to explain ASD to her friends, so she has ways to deal with other people over the ASD-related differences that take the “sting” out of teasing or questions. Model this by letting the sibling hear you explain ASD to others.
Explaining ASD to a sibling will take different forms, depending on the age of the sibling. A preschool-age child won’t be able to understand what ASD is, but will notice that a sibling is behaving differently. Elementary-school-age children are likely to be very aware that their sibling is different and to be embarrassed about their sibling’s behavior around friends. Talking openly about these differences with your children from the time they are little will enable them to voice their feelings instead of being ashamed of them. If a sibling doesn’t want to have friends come over, ask about it. See if there are ways you can help this sibling be more comfortable. Siblings may also worry that ASD is contagious or that they too may develop ASD. Siblings may feel guilty about their negative feelings toward the child with autism. They can even feel guilty that they don’t have autism! Some wonder if they somehow caused their sibling’s ASD. Talk openly with your child about these fears and worries so you can provide facts and reassure your child. You will probably have these conversations many times, because it is unlikely that your child will understand everything that you say the first time you explain it. Different questions and concerns will arise over time. Make ASD an open subject in your household. If your child never asks about ASD, it’s most likely because it seems to be an unacceptable topic. Bring it up yourself, the sooner the better, and the more frequently the better. Ask your child what scares him about his sibling’s ASD, what worries him, what makes him angry, what he thinks about, and how it affects his life.
Some siblings feel they must try to be “perfect” to make up for the child with ASD; they may feel pressure to achieve in academic or sports activities. The pressure may come from inside them, or it might be coming from you. Have your expectations increased for your other children because they do not have a disability? Not having autism does not make them “super-children.” Help your child voice these feelings, and listen quietly, as you do with your partner. Acknowledge and restate the feelings rather than rejecting them, interrupting them, or denying them. (Some of them will be hard to hear, so be prepared.)
Your child may have some painful observations about you—about your absorption in the sibling with ASD; about the lack of family time; about your increased expectations for your child for greater maturity, responsibility, child care, household care, or emotional support. Listen! Take it in. Try hard not to deny, not to become defensive, and not to get angry. Listen to what your child is saying; provide the information your child is asking for; correct any misconceptions; and reassure your child of your love, your acceptance of the child’s feelings, and your appreciation for the child’s honesty and trust in you.
If your child’s behavior has changed significantly (acting out, not seeming like herself for a long period, withdrawing from activities and relationships); if your efforts to talk to your child or provide more support are not helping; and if your child’s functioning at school, at home, or with friends is suffering—talk to your child’s doctor. Signs that a sibling may be having difficulty include these:
Needing to be perfect
Eating too little or too much
Frequent complaints of headaches or stomachaches
Loss of interest in everyday activities
Frequent crying or worrying
Withdrawing from social activities
Increased aggression
New problems at school
Signs of anxiety or depression (see page 41)
Take Advantage of Books and Other Resources Specifically for Siblings
Increasingly, the special needs of siblings of children with ASD and other developmental disabilities are being recognized. Numerous books written about and by siblings, including those with ASD, are available. We’ve listed some of these at the back of the book (see the “Further Reading” list in the Resources). Also, look for special programs, websites, and workshops for siblings of children with ASD. These programs offer siblings an opportunity to talk with other children who have a sibling with ASD, and especially to share their feelings and concerns with other children who understand the challenges and rewards of having a sibling with ASD. The Sibling Support Project (www.siblingsupport.org) is a national program dedicated to the brothers and sisters of people who have developmental disabilities and other special needs. The project’s website offers information about workshops, conferences, publications, and opportunities for siblings to connect with one another. Autism Speaks (www.autismspeaks.org) also lists resources for siblings in the “Family Services” section.
Dealing with Your Extended Family: Help or Hindrance?
Extended family members can be among the greatest parts of a supp
ort system for a family with a newly diagnosed child with ASD, and they can also be one of the biggest challenges for young parents. If both your and your partner’s families are there for you, supporting your concerns, aware of the evaluation process, sharing all the emotions that occur after diagnosis, providing comfort and reassurance—then rejoice! They are a strong part of your support system and will help immensely in the adjustment process. Provide them with all the information that they want and you have. Let them help you. Let them care for your child. Let them join you in appointments, meetings, evaluations, as you and they wish. The more the extended family shares the challenge of autism, provides ongoing love, support, and encouragement for you, and appropriate optimism for your child, the better the adjustment process goes.
However, extended family members go through all the same emotional processes that parents do. They may not want to see the problems your child has and may deny your observations. They may tell you that you’re worrying too much, you expect too much, boys don’t talk until later, an uncle didn’t talk until age 3, or you’re spoiling your child and doing too much for him. This makes it harder for you to move ahead, and young parents sometimes move away emotionally from their families during this period to get through it.
If this is happening to you, there are several things you can do. First of all, trust yourself and your partner. You live with your child every day. You are not crazy, you love your child, and your worries are real. Proceed as we have suggested, by calling your doctor. Don’t feel guilty about distancing yourselves a little from your family members if you need to get through this. Tell them as much as you can about each step in the process so they know what is going on, but make the decisions you know in your heart are right for you and your family and child.
Second, turn to other people in your support system. Talk to friends and others who are sharing your concern and providing you with emotional support. Lean on them right now, so you don’t feel so alone. You need support to get through this period, and the more support a young couple has, the easier the process can be. Third, ask others who are part of the process to talk to members of your extended family. Your service coordinator, a parent from the autism advocacy group, one of your child’s therapists or evaluators, or your child’s doctor may be very willing to have a family meeting and answer members’ questions. It is much easier to have another person providing the information than to do it alone when your family is not “ready” for the diagnosis. Take others up on their offers of help!
Finally, continue as you need to for your partner and your children. Keep your extended family members aware of what is happening. You might provide them with copies of reports that people give to you, treatment plans, home programs. If they sometimes take care of your child, show them how to implement basic treatment routines that help your child. At some point, your family will come around to accepting the diagnosis and supporting you. However, family members all have their own timetables of acceptance and have to move at their own pace. Families come around, and seeing a child they love making progress is a big part of what brings them around. Occasionally some family member will not adjust to your child’s special needs and may even undermine what you are trying to do. If this happens, it’s okay to limit the time your child spends with this person until he or she comes around.
TAKING CARE OF YOURSELF
Now it’s time to talk about you! No time to take care of yourself now that you’re devoted to helping your child with ASD? Ask yourself this: If you are tired, preoccupied, and stressed, how can you optimally care for your child—and the rest of your family? Even though you may feel like your needs come last, they can’t, or all will suffer. Your needs are as important as your children’s and your partner’s, and you need to monitor and care for yourself—your physical well-being and your emotional well-being—daily, just as you monitor and care for everyone else, so that you can continue to do so.
Physical Health
We don’t have to tell you what you’ve heard a thousand times before: Physical and emotional health are built upon adequate nutrition, sleep, and exercise, and these are even more important when you are faced with stresses, such as learning that you have a child with ASD. When you’re caught up in caring for a child with autism, it’s easy to make these fundamental healthy behaviors a low priority. It’s easy to forget to eat until going through a fast-food drive-through seems like your only option. It’s easy to pretend you can maintain your energy on 5 or 6 hours of sleep a night. And it’s easy to forget how good you used to feel after a walk, bike ride, or trip to the gym.
So let’s review the fundamentals. You know the importance of good nutrition—whole grains, lots of fruits and vegetables, low-fat milk products, lean meats, poultry, and fish, as well as nuts, seeds, and beans—for protecting you from illness, maximizing energy, and enhancing your mental capacities. How can you manage that for you and your family, when fast food, soda, and snack foods are quick when time is short? Try these ideas:
• Buy and put fresh fruit and ready-to-eat veggies out on a table or counter, to help you and your family learn to turn to fruit instead of rooting around in a cabinet for high-calorie snacks. Substituting fruit and veggies for some of the snacks and cookies doesn’t cost any more.
• Try to eat home-cooked meals (not necessarily cooked by you!) as often as you can. Try to find a weekly time to cook, and when you do, make a big stew, or soup, or a big platter of grilled chicken to go in the fridge so you can use it for dinners for a few days. Buy salad ingredients and veggies that are already washed, cut, and ready to use. It may seem more expensive, but you will eat more veggies and end up with less waste (the most expensive food is the food that gets thrown out!).
• When others ask what they can do to help, ask them to make and freeze a healthy dinner for your family. It will make them feel better to be able to contribute, and it will help you with a big and important task—feeding yourself and your family well.
Sleep can feel like a rarer commodity than ever if you’re occupied with your child all day and then kept awake by worries at night. Here are a few ideas for better sleep that you probably already know but might need help remembering:
• Consider your bedtime sacred. Go to bed at a reasonable hour, even if you feel that your to-do list is endless.
• Help yourself ease into sleep with things that make you sleepy, not stressed. Don’t watch the news in bed, use your computer or phone right before retiring, or try to plan tomorrow’s agenda in your head while you lie there. Take a hot bath or shower, read something innocuous, listen to relaxing music, or imagine the most restful moments of your life as you ease yourself into sleep.
• If you’re suffering from insomnia, don’t wait for weeks to see if it will pass. Talk to your doctor soon! There is much he or she can do to help.
• If your children are sleeping with you and you wish they were not, move them into their own beds. If you need help with this, consult your pediatrician or your child’s team. There are also excellent books for parents on helping their children sleep independently and through the night.
• There are excellent self-help books available to you on improving adult sleep.
Consider your own nutrition, sleep, and exercise as part of the treatment for a family with ASD, rather than a luxury for you that you can’t afford right now. Not convinced? Check out the list of benefits in the sidebar on the next page. Getting 20–30 minutes of exercise a day can improve your heart, your lungs, your sleep, and your mood. Here are some exercise opportunities that can work for parents with young children at home:
• Regular walks around the neighborhood with your child in a stroller
• Regular trips to the park with two adults—one watching the children and the other getting in a good walk, then switching
• Trading off times and days with your spouse to go for a walk or ride or to a gym or dance class
• Trading child care with friends so you can get in exercise time, ma
ybe even as a couple
According to medical research, regular exercise can . . .
• Improve your mood
• Reduce stress
• Boost your confidence
• Prevent heart disease
• Increase your energy level
• Help manage your weight
• Promote better sleep
Research has shown that exercise can also ease depressive feelings and anxiety. One study showed that people reported feeling less tense and had improved energy after only a 10-minute brisk walk!
Emotional Health
Because you now have more responsibilities and challenges, paying attention to your emotional health is more important than ever. Emotional health has many facets: giving yourself time to deal with the emotional impact of your child’s diagnosis; cultivating your supports; spirituality; and problem solving. We touch on a few key points here.
Dealing with Grief, Sadness, and Anxiety
Even when you are doing all you can to cope with the challenges of raising a child with ASD, you’re likely to find yourself feeling waves of grief and sadness, depression and anxiety.
Grief. During the period after first learning that your child has ASD (or any other chronic medical condition, for that matter), it is not uncommon to experience a period of grieving. All parents form an image of their “imagined” child (often even before birth). But part of the typical parenting process is gradually coming to know and love our children as they are, rather than as we imagined or hoped them to be. The athletic father who imagined playing baseball with his son comes to accept and appreciate the child’s emerging preference for music, and the musical mother who dreamed of singing in the choir with her daughter learns to play basketball with her when she shows no interest in music. However, when parents find out that their child has a long-term medical condition, such as ASD, their “imagined child” is changed very suddenly.
An Early Start for Your Child with Autism: Using Everyday Activities to Help Kids Connect, Communicate, and Learn Page 5