In the Parenting section of our website, we try to talk about topics of interest to all parents, rather than parents facing one particular issue. But this month, our article turns the scope on families dealing with Autistic Spectrum conditions. Specifically, our goal this month is to understand some things that happen to other members of the family when Autism and Asperger’s Syndrome become part of the picture.
Everybody Gives Up Something
Adam, age 12, understands some of what it means for his brother to go through life with Asperger’s Syndrome, a condition that affects the ability to adapt to change and to understand basic social exchanges. “For my brother, it means he has to eat the same cereal every morning or else he gets seriously upset, and it also means I have to help him at school so he understands when kids are making fun of him. If I didn’t get him into games and stuff, he’d just walk around the grass all lunchtime.” In Adam’s words, we can hear the "I didn’t ask for a brother like this, but he didn’t ask for his problems either" dilemma. For the sibling without autism, family life can feel like a non-ending series of compromises. Although many of these situations can seem small and easy to cope with – Adam’s brother needs to always have the car window a crack open, and he gets upset if Adam chews his food too loudly – the tension for Adam adds up, and usually this ends up in behaviors that Adam is not really proud of, like intentionally provoking his brother until a blowup happens. Adam’s parents used to view this situation very differently, confronting Adam for what seemed like mean-spirited behaviors toward his brother. “We would always raise Adam’s name when we were trying to deal with situations between them,” Adam’s mother acknowledged, “and, honestly, we probably knew it was much easier to deal with Adam than try to get Thomas to change his ways. That was before we realized that Adam was really depressed.” Recognizing that Adam had slid into depression about his family’s stressful situation, and that he was really masking his feelings out of guilt and responsibility toward his brother, Adam’s parents changed their approach. “It was like we had come to rely on Adam’s emotional strength to keep his brother calm. But we emotionally bankrupted him. His dad and I felt really guilty when we realized what had happened.” After that, Adam’s parents found a sibling support group for him through their local autism support chapter and gave him some “Adam Time” at home where he could make a lot more decisions for himself.
Compromise, Frustration, and Guilt: Emotions that Every Parent Dealing with Autism Knows:
Parents are biologically programmed to stay “in tune” with their children, reading cries of distress and discomfort, and reaching out to soothe until the cries become sobs and sighs, and then finally a return to normal. None of us are perfect at the job, but most parents experience a feeling of confidence when a child responds to soothing communication by being soothed. But what happens when autism gets in the middle, and reasonable attempts to calm down a tantrum are met with a trumpeting elevation of yelling or screaming, and a seemingly endless conversation in which the child explains just why “it has to be that way.” How does it affect a new mother or father when their new baby strains and arches in response to touch, or looks away indifferently? Autism can short-circuit the mutually rewarding cycle of frustration and soothing that helps parents feel good about the job they are doing. Sensory problems that cause a child to respond differently to positive touch and gaze avoidance leave a chasm in the non-verbal communication system between parent and child. When parents repeatedly experience a lack of affirmation of instinctual parenting, it can leave a mother or father feeling depressed and helpless, according to Olsson and Hwang, researchers who have examined depression in mothers of autistic children (2001). In the past, it was commonly thought that this level of stress led to extraordinarily high divorce rates among parents of children with autism, although researcher Brian Freedman at the Kennedy Krieger Institute has collected data that challenges this statistic. Would you feel less depressed if your child didn’t have an autistic spectrum condition? Asking parents that question is like asking if life would be different if we all lived in plastic bubble houses on the moon. . . it just isn’t the situation. What does help parents who feel the weight of exhaustion and depression? Things like online journaling, connecting with other parents who are in a similar circumstance, and pursuing activities weekly that remind a mother or father that she is a person as well as a parent.
Mothers know about it, therapists talk about it, it seems that Dads are really the ones who are most challenged in coming to terms with it. “Dad denial” is a real issue, and a common one in families with autistic children. It shows up with many different faces; dad questioning even the doctor who gave the same second opinion as the first doctor, arguments about starting speech therapy when he may “grow out of it,” or sitting in the doctor’s waiting room with arms crossed and an angry look. In the most difficult situations, fathers may pull away and withdraw into work or other habits when their families need them the most. On the father’s side, he may feel like he is the only one in his child’s life who still believes in him and who still sees him as a whole child. Fathers may feel that it is a matter of protecting their child. Looking deeper into the situation, fathers may be biologically or socially predisposed to take this perspective, feeling like autism is a label being imposed on the child by a doctor or school psychologist. Early in the process of testing and diagnosis, fathers often feel like they would be giving up on their child by accepting the answers coming back from the tests. As the situation progresses, if the diagnosis seems more and more likely, fathers may feel depressed, defeated, or helpless. Paying off medical and testing bills becomes an easy excuse for dads to start working more, and spending less time with the family rather than deal with these challenging feelings. Of course, this reaction runs directly counter to a child’s mother’s possible reaction of wanting to get help as soon as possible and as strongly as possible. Conflict and arguing about “does he have it” or “doesn’t he have it” is the result, and makes a difficult situation even more challenging. It would be a false stereotype to say that all dads experience “daddy denial,” and truthfully, both parents sometimes do not want to look at the situation directly. The fathers who have the best outcome seem to be the ones that figure out that their child still needs them as much or more than before. . . and a few autistic kids I know can hit a baseball over the heads of whole team of neurotypical children.
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The Fortune-telling Glasses
After the early stress and worry about finding a way to make living with autism or Asperger’s a part of the daily family routine, the situation usually becomes easier as the days pass on. Parents find more resources in the community, parents realize that it is a matter of teaching differently, and that most kids show more “islands of good functioning” as they grow older. Parents of children who have autism-related speech delays are often surprised at how verbal and talkative their kids become after enough speech therapy. Not all autistic children give ten minute lectures on the inner workings of a computer or television set, but most show more than one area of personal strength. As I have written in earlier articles, parents do best when they set their sights on goals of about five years into the future, and can ask, “What do I need to be doing now to get my child to the next level?” No one can tell parents and siblings how to react to the news that autism or its related conditions are now part of their lives, but with the kind of support now available no one has to go through the situation in isolation.