Caring for an Aspergers (high functioning autism) youngster takes a tremendous toll on the whole family, and neurotypical siblings are no exception. As moms and dads, our exhaustion, stress, and uncertainty about how to respond to the needs of other children can leave us feeling guilty and drain our reserves — and might tempt us to downplay or ignore the impact a youngster's disorder may have on his siblings. By being aware of what neurotypical (i.e., non-Aspergers) brothers and sisters are going through and taking a few steps to make things a little easier, moms and dads can address many issues before they unfold.
Family routines and dynamics naturally change when a youngster has Aspergers, which can confuse and distress neurotypical siblings. In addition to fear and anxiety over the disorder, they often experience the feeling of loss of a "normal" family life, and loss of their identity within the family.
It's normal for neurotypical siblings to:
- worry about the Aspergers sister/brother
- fear that they or other loved ones will catch the sibling's “disease”
- feel guilty because they're “functional” and can enjoy activities that the sibling cannot
- be angry because moms and dads are devoting most of their time and energy to the Aspergers sibling
- feel neglected and worried that that no one in the family cares
- resent the sibling who may never have to do chores
- resent that the family has less money to spend now because the sibling is receiving services and/or treatment
- be nostalgic for the past (wishing things could be like they were before the Aspergers sibling came along)
- feel residual guilt for being "mean" to the sibling in the past
- experience generalized worry or anxiety about an uncertain future
The way brothers and sisters express their needs will vary considerably — some may act out, some may try be the perfect youngster, and many will do both. Most studies find that siblings of a youngster with Aspergers or Autism are not at any increased risk for mental disorder, although they may be at greater risk for behavioral and emotional manifestations of their distress.
Pay attention to any changes in children' behavior, and talk to them frequently about how they're doing and what they're feeling. The more room children have to express their emotions, the less emotional turmoil and fewer behavioral problems they're likely to have. Signs of stress in children can include any changes in sleep patterns, appetite, mood, behavior, and school functioning. Younger kids may pick up on parental stress and show regressed behaviors (i.e., doing things they did when they were younger and had already outgrown). Even if you don't see any signs in your children, you can be pretty sure that changes to their routine and seeing their moms and dads and other family members upset is likely to be causing them stress.
While you may not be able to take away the source of your children's emotional pain, you can help alleviate their stress and make them feel secure, cared for, and supported. These suggestions will help, but it's also helpful to seek support (e.g., through counseling) to help you take better care of all your kids:
1. Accept the situation for what it is. Realize just as you may mourn the loss of a more mainstream child, the Aspie’s brothers and sisters may also be sad they don't have the kind of sibling-relationship that other siblings enjoy. Let them talk about those feelings.
2. Be patient and attentive. Have a lot of patience with regressive behavior, especially on the part of neurotypical children, who may have trouble making sense of emotions. At a time when moms and dads' nerves are frazzled, it can be hard to stay patient and attentive, but it's essential for siblings. However, it's not a good idea to let children behave inappropriately or get away with behaviors that you would not have allowed before the Aspie received an Aspergers diagnosis. Rather than make a youngster feel relaxed, this can increase anxiety, jealousy, or feelings of abandonment.
3. Become informed. Fully educate yourself about your Aspergers child and then inform his brothers/sisters on an age-appropriate basis. Know that Aspergers kids find it very difficult to pick up on social cues and often have intense, narrow interests. Even a young sib can understand that, "Michael gets upset when we stop talking about trains, but we're working on ways to help him."
4. Include siblings in the treatment and care. Including neurotypical children in some of the treatment sessions can help demystify the disorder. They also can benefit from connections to other client’s' siblings. In addition, giving neurotypical children specific, non-threatening "jobs" can help them feel like an important part of the treatment process. Encourage their involvement in a variety of ways, and let them tell you how they'd like to be involved — maybe helping with social skills training to keep a the Aspergers youngster connected to life at home and school. Many treatment centers offer sibling counseling groups, workshops, and other programs that can help your neurotypical children feel less alone.
5. It's OK to have fun. Enjoying yourself and having fun can go a long way toward relieving stress and recharging your battery. In addition to trying to maintain a normal schedule of activities, whenever feasible set aside some time for your children to spend with friends and family without focusing on the disorder. You also can set aside one-on-one time with your neurotypical children where the focus is on them and everything that's going on in their lives other than their sibling's disorder.
6. Keep it "normal" as much as possible. Try to maintain continuity and treat your children equally. Stick to existing rules and enforce them. In addition to minimizing jealousy and guilt, this also can send a strong optimistic message about your Aspergers youngster's progress. And try not to fall into the trap of relying on neurotypical children as caregivers before they're ready. Accept help so that your neurotypical children can stick to their typical routines as much as possible. Also, do not coddle the Aspergers child any more than is necessary. He will need to learn how to hold his own in life, and dealing with siblings is a normal part of gaining this independence.
7. Keep the lines of communication open. Pay attention to siblings' needs and emotions. Encourage them to talk about their feelings — the good, the bad, and the guilt-inducing — and try to read between the lines of their actions. This can be difficult when you're exhausted and stressed due to caring your Aspergers child, but a little attention and conversation can let your neurotypical children know that they're important and their needs matter.
8. Look forward – not back. If you find yourself feeling guilty for not being a perfect parent to your neurotypical kids, don't beat yourself up — dwelling on the past is not productive. Instead, try to make a point of recognizing your children' feelings and needs now, and move on from there.
9. Say yes to help. Accepting help with transportation, meals, childcare, and other daily activities can take some pressure off of you so that you have the emotional reserves to be there for your family. You'll also be teaching your children a valuable lesson about accepting generosity from others.
10. Understand that Aspergers is an "invisible" disability. Siblings may be embarrassed in front of their peers when, for example, their brother (who looks no different than any other child) can't stop clenching and unclenching his fists.
Can you treat the child with Aspergers the same way you treat his siblings? Unfortunately, you can’t. The Aspie will probably need a lot more support than his siblings do. But at the same time, there are many things you can try to limit the amount of jealousy that the siblings will feel because of this inequality.
My Aspergers Child: Preventing Meltdowns and Tantrums in Aspergers Children