Children with autism undergo language and social difficulties that cause stress for the family. I should know. I was the oldest of five children growing up on a farm in Kansas. My sister, born in 1954, was diagnosed with autism at the age of four. The knowledge of autism at that time was scanty, so her difficulties were largely misunderstood and even unknown.
At that time persons with autism were estimated to be about one in ten thousand. Now estimates have risen to approximately one in five hundred. Today many more children are growing up with siblings who have autism. Parental attitudes make a big difference in the lives of all their children. These suggestions from my experience and from talking to others who have grown up with similar sibs may be helpful for parents who also have typically developing children.
Acknowledge feelings of the sib. Parents will feel shock, depression, guilt, anger, sadness and anxiety. So will the sibs. With fewer life experiences, including inexperience at recognizing feelings, children will be less prepared to cope with their emotions. Simple acknowledgement on an age-appropriate level can help. Especially if life seems too difficult, some families will want to consult a professional.
Hold family discussions. Discuss problems openly with other children in the family. Encourage questions and reactions. A disability needs to be talked about. Lack of communication made understanding and living with my sister more difficult. Avoiding dialogue will only encourage children to hide problems when they are adults with families of their own.
Keep sibs informed. As the parents learn about autism, children should be informed on an age-appropriate level. An excellent book for young people who have brothers or sister with autism is Everybody is Different by Fiona Bleach, available from the Autism Resource Network, Inc., 904 Mainstreet #100, Hopkins MN 55343 USA. The book explains some general behavior, three characteristics of autism and then answers questions such as “Why does my brother or sister make strange noises?”
Encourage the sibs to go on after an embarrassing situation. Tiffany, now twenty-six, experienced many embarrassing situations while growing up with her sister Lindsey, who has severe autism. Once when the girls were much younger, they were singing in church in a minor key-‘Lord, have mercy.’ Lindsey suddenly burst out screaming-“Oh, no, we’re all going to hell.” Her mother hastily took her out of church. Tiffany said, “For the good of everyone, forgive, learn from the situation and move on.”
Have a sense of humor. This does not mean make fun of the person with a disability or laugh at him or her. However, laughter helps. Ceara chose her disabled brother to be at the guest book at her wedding. “I picked him because I love him,” she said. She rehearsed for months with him what to say, ‘Welcome to Ceara’s wedding. Sign the book.’ What he actually said was, ‘You’re late. Go home.’ “You have to have a sense of humor,” said Ceara. “He’s kept his through all that’s happened to him.”
Give the brother or sister opportunities to find a friend whose sibling also has autism. This may be especially important in a family where there are not other typically developing children. Gordon, who’s seventeen, has a twelve-year-old brother with autism. He made a friend, the drummer of a band he plays in. The drummer’s brother is also in special education. “No one else [besides the drummer friend] knows what that’s like [having a brother with disabilities], even my best friend.” Places for brothers and sisters to find friends might be in a sibling support group or the children of those who attend a parent group.
Encourage the sib to develop a special interest. A strong interest can help through rough spots and even lead to a future career. Ceara loved playing the piano as a child and adolescent. Her college degree is in music therapy. My escape was always reading and creating stories. Though I taught for a number of years, today I spend much of my time writing. Other interests such as playing tennis or gardening can provide hours of enjoyment.
Respect individual differences. As any parent knows, no two children are exactly alike. I am five feet two inches tall. One of my brothers is six feet four. A sister is almost six feet. Another brother and sister are five feet and ten inches. Our personalities are as different as our sizes. My daughters are also very different in size and personality. One started driving, reluctantly, at the age of eighteen. The other begged for car keys-and the car— from the moment she turned sixteen. They chose to attend different high schools, both inconvenient and rewarding for me. In the long run, their choices benefited them both.
Promote an attitude of gratitude. At the age of three, my brother was thankful for “green beanz, pork’n beanz, and all other else beans.” Though I like beans, this would probably not be my top priority in the thankfulness department. Nevertheless, kids have their own ideas. Though I do not do it daily, I keep a gratitude journal. In the journal I write down five things I’m thankful for and date it. When I look back, I am reminded of what was happening on that day, as well as many blessings. There’s nothing magic about the number five. Two or ten will do just as well.
Support volunteering. As a college student, I volunteered in a chapel in a state school for the mentally retarded. With other college students, I helped escort residents back and forth from cottages for chapel. We organized choirs and bell choirs and Sunday school classes. We took some of the more able residents Christmas caroling to the cottages of the less able residents. One cold, wintry night, I trooped through snow singing off-key, not that anybody cared. Afterward, we gathered in the chapel for hot chocolate. For me, that was a very rewarding experience. Opportunities to volunteer abound. Even children as young as ten can volunteer with a parent. A new study suggests that volunteering face to face, helping out strangers, is good for mental health for all of us.
Stay open to possibilities. Things are happening to benefit persons with autism and their family members all the time. Many children profit enormously from intensive speech and social skills therapy. Parents and professionals work diligently to learn more about what autism is, how it is caused and what can be done to assist those with the disorder. What is known today is different from what was known ten years ago.
Of course, living with a person with autism provides many rewards, but it is also fraught with many difficult moments, often overwhelming for parents and sibs. Maybe some of these strategies, helpful to me, can benefit others.
Annette Wood is a writer living in Wichita, Kansas. Over 250 of her articles have appeared in local, regional and specialty publications. She is working on a book about living with her sister, A Different Kind of Kin. Email her at annette@woodwriter.com