“Plant a radish, get a radish, never any doubt.
That’s why I like vegetables; you know what they’re about.”
Words by Tom Jones from The Fantastiks
Commonly Shared Family Expectations
1. Children will eat what is served.
2. Dinner is eaten as a family.
3. Families take vacations together.
4. Parents need time to discuss family issues without kids around.
5. Parents need time alone without the children.
6. Socializing with other families and relatives is a part of growing up; children become socialized through experience.
7. Doing chores, such as helping with meals and cleaning up, help children be contributing members of the family.
8. Children need to learn to share with others.
9. Children need to consider other people’s feelings.
Most couples with children have certain, sometimes unspoken, expectations about their children and how they want them to grow up. These expectations are largely based upon their own upbringing and the family life they experienced in their youth. Were there family dinners every night? Did the family attend church every Sunday? Did they take a yearly skiing trip as a family? Did the children learn to fish or hunt or play baseball from Dad? Did both parents work outside the home? Some of the expectations are so strongly rooted in our culture that they have become societal expectations of how a family operates, as well.
Parents of an autistic child often struggle with these ‘family norms’ as they begin to realize that much of what was assumed to be normal within a family is not easily attainable. As a result, adults may experience some level of low-grade grief almost constantly. Suddenly, the dreams about having a ‘normal’ family life shatter into thousands of pieces. Parents find themselves constantly questioning both their parenting skills and their assumptions of how daily life should unfold. Frequent worries of “Is this supposed to be happening like this?” or “This just can’t be the way it should go,” become almost pervasive thought patterns. Disputes arise about ‘right’ and ‘wrong’ family dynamics, further fueled by well-meaning, but often misplaced comments by family members, friends, and acquaintances. Lack of control over this shift and change in family interaction patterns can be alarming, frustrating, confusing, and downright depressing.
On the bright side, however, these challenges provide opportunities to add dimension and surprise to our lives. Parents of special needs children can pave the way for redefining ‘normal’ and create family structures that embrace the differences that accompany autism, thus creating a more tolerant society as a whole.
“Why does Ben always get away with ________?” my daughter laments on a regular basis. It was often difficult to explain to her, a younger sibling, that she was, in fact, more mature than her elder brother at times. “Life isn’t fair” can be particularly true in a family facing autism/AS, with often challenging emotional repercussions among siblings. This was especially true for our family through the years before Ben’s diagnosis. My son simply did not learn the same way my daughter did. She often interpreted what I did as condoning Ben’s problematic behavior. Even today, there are times I know I must handle some situation in a completely non-conventional manner, perhaps in a way she can’t understand.
For parents to join together and provide a consistent parenting style is challenging, even with typical kids. Throw in the challenges of a special needs child, and family life can easily deteriorate into what often feels like a guessing game. Friction between parents commonly occurs, sometimes with devastating consequences. We didn’t receive the AS diagnosis for Ben until he was 12; by then my husband and I were divorced. We had no idea why he was the way he was and had no one to blame but each other, perhaps. I grieved over not only the loss of my partner and our marriage, but the expectations I had carried with me, for years, of how we would raise our kids and what constituted being a ‘good’ parent.
“I will only go if we can spend at least three nights in one place,” was the qualifier Ben gave me about family trips. In later years it became, “I will only go if they have high speed Internet.” Over the years, his conditions resulted in Ben staying home at times instead of going on a short trip with us. Although this decision often resulted in all of us feeling happier and more relaxed, I still felt I was being robbed of quality family time. But as we parents have come to learn, if an experience is meaningless to the AS child, then nobody wins.
Most often the trips we did take together were visiting my parents either in Baltimore or at their camp in Maine. While Ben’s quirkiness was tolerated, the vacation was far from being relaxing and enjoyable. Everyone was affected by Ben’s needs for particular foods, cooked a certain way. Keeping him occupied with appropriate activities was even more of a strain. The entire family felt the tension of Ben’s presence as he was driven to analyze the safety of my mother’s electrical outlets, cords, appliances, etc. Anything electric mesmerized Ben. Why couldn’t he just play in the sand at the beach like the other kids? Why couldn’t he just go outside and play? Any sense of ‘togetherness’ was fractured by this child who unpredictably found ways to irritate everyone. As the mother, I absorbed the brunt of his behaviors, trying to anticipate and head off any impending disasters and misunderstandings between Ben and his grandparents. I felt like an interpreter on 24-hour duty. Although we may have been physically together, it rarely felt like the ‘togetherness’ I had envisioned for our family.
The solution that worked for us is that either I go along to visit my family or both my daughter and I go together. When I do travel with Ben, the trip is usually focused on something that interests him or will benefit him. On these trips he does very well. Overall, we simply don’t travel much anymore, preferring to stay at home as a family.
WHAT SOCIAL LIFE?
If you ask my daughter how having a brother with Asperger’s most affects her, she will talk about how awkward it is socially. For four years they attended the same school. For three of those years, we still did not have a diagnosis for him. In sixth grade, he was finally diagnosed with Asperger Syndrome. Despite extensive disclosure about Ben’s situation and in-service for the staff and students, friction among Ben and his classmates continues. Ben’s behavior was disruptive, odd, and scorned by most of the kids in the school. Many of the kids asked my daughter if she really even liked her brother. Put into uncomfortable situations like this left my daughter resenting Ben. (She would probably use much stronger words here.) Inviting friends over was stressful for her and just provided further opportunities for others to ask her more questions about her brother’s strangeness. She is very embarrassed by his behavior and feels it has affected her social status at school. This year they will both be in the high school. She is still uncomfortable with his public behavior. Hopefully the school will be big enough for them to feel separate from one another.
When Ben was young, we had a wide circle of other families we gathered with at times. Ben’s actions were fairly well accepted by them most of the time. However, he was rarely invited over to play with friends. His impulsive actions were often viewed as intentional on his part. I had no way of justifying his behaviors (Ben had not yet been diagnosed), but I sensed that his behavior was not ill-willed. I suspected that he was responding to some unspoken fear or over stimulation. Our family coped by having Erin go to friends’ houses frequently. We also did not entertain other families at our house. The family stress level was maintained more easily with fewer outer distractions.
Now that both kids are teenagers they lead very separate but adequate social lives. It is still awkward for my daughter to have friends over, but more often than not, Ben is at a job site or with a friend.
FOOD AND EATING ISSUES
A child with autism is likely to have a limited number of foods he will eat. Sensory issues seem to be the main culprit. Textures and tastes rule the child’s ability to tolerate certain foods, often making mealtime a real test of wills. Couple that with the socialization issues that are a hallmark of autism, and assumptions about dinnertime being a chance for quality family time together can fly out the window.
Many years ago I stopped cooking just one meal for dinner. By age 3 or 4 my AS son Ben’s tolerance for a variety of foods was severely affected by a diet he was put on for multiple food allergies. Whatever he ate, he became allergic to. As we watched our son become rail-thin on the doctor’s diet, we as parents decided to let him enjoy the foods he loved most again and deal with the consequences. Every night he wanted pasta. As a family we could not tolerate such a mono-diet, so I started preparing two meals for dinner every night. Pasta still remains a staple of Ben’s diet today, at age 16.
Several years ago I let go of Expectation #2 – dinner is eaten as a family. At our house, the family dinner was NOT working. Ben’s inability to carry on pleasant conversation created tension; foods were too hot, too cold, or too close to one another. His younger sister’s stories about her day were met with his sarcasm and belittling. Ben had no friends, no stories to tell of his own. He wanted to be in front of a screen (TV or computer), not sharing the day’s events. My daughter resented his interruptions which led to fighting, stress, and often, tears. I decided that my expectations had to change. In order to maintain strong relationships with each of my children (and my sanity) I no longer insisted that we all eat together. My daughter and I now eat together, most often the same foods. For the most part, Ben eats on his own at his computer – his link to the world and his source of relaxation. Meals are less contentious; my daughter gets a chance to share her day with me without disdainful looks and comments from her brother. Surprisingly, Ben usually joins us once or twice a week on his own accord. My quality time with Ben happens mostly in the car or in his room. These settings are more relaxing and therefore he is more apt to talk to me.
IT’S WHO THEY ARE THAT MATTERS
Getting a diagnosis helps everyone in the family. Getting professional counseling to sort out differences in parenting styles, expectations and to deal with the need to ‘blame’ someone is also critical. Often, once a diagnosis is made, relatives with similar quirks or behaviors may become more evident. Sometimes just identifying these individuals creates a sense of acceptance of autism/AS and re-establishes some degree of normalcy for a family. As the opening quote suggests, when we plan a child, we get a child. The mystery lies in who they are, not what they are. It is who they are that helps weave the tapestry for their family.
In the end, love is what bonds families together. Living with a child with autism/AS may create some extremely challenging moments. It tests our ability to be flexible in our thoughts, our actions, and our dreams. It demands that we reevaluate core beliefs and develop new ones, if we are to survive happily. Our unconditional love for one another is what pulls us through the hardest times.
In closing, I would like to share an experience my daughter had at the close of music camp this year. Attending was a boy who she was sure had Asperger’s. On the final day they talked about the struggles he had been experiencing in school, particularly in middle school. The isolation and social ostracizing he described reminded her so strongly of her own brother’s struggles that she was moved to tears. Despite the years of frustration and anger that my daughter had felt towards her brother’s autism, it had planted in her the seeds of compassion and they had grown so that she was deeply affected by this boy’s story. Her life will be forever enriched by the compassionate spirit that has blossomed within her. Perhaps our ‘family’ has not been that bad after all.
Recommended reading: And Don’t Bring Jeremy, by Marilyn Levinson
Anne Patterson lives on the coast of Maine with Ben (16) and Erin (14). She is self-employed as a tutor, massage practitioner, and a writer. She is currently a graduate student working towards an M.S. in Education.
Ben is self-employed as a computer specialist. The high school hires him in the summer to work on their 200+ computers. Oh, and yes, he is a junior in high school.
Erin is a freshman in high school. She is very active in music (trumpet) and theater. In the summer she works as a deckhand on a ferry boat.
This article originally appeared in the November-December 2002 Autism Asperger’s Digest, and is used by permission of the author. The bios are from that time.