Autism, The Invisible Cord
A Sibling’s Diary, by Barbara Cain
Published by the American Psychological Association
I came across the author of this book while browsing through Twitter profiles. I compulsively look for tweeters with ‘autism’ in their profile description and hit the jackpot when I came upon Barbara Cain’s. Not only did she have ‘autism’ in her profile, but she also had the word ‘sibling’. There is a good chance that a person with ‘autism’ and ‘sibling’ in his or her profile is someone to whom I could relate. My older brother Michael is autistic, you see.
The Invisible Cord sheds light on some of the family dynamics that arise when a sibling is autistic. The narrator is Jenny, a 14-year old, who is the older sister of Ezra, an autistic boy. Ezra is verbal and able to attend school. Jenny chronicles the worries of her teen-aged life in a secret diary. Interwoven with the normal teenage angst about boys, popularity and BFFs are some very adult concerns. Jenny is faced with the issues of the disruptiveness of her brother: embarrassment of his repetition of Viagra commercials, for example, and her need to keep the door to her room locked so he does not destroy her possessions. The special treatment Ezra receives from her parents seems unfair to her and adds to her feelings of invisibility. But when her brother is bullied, she steps into the fray without hesitation. She shows her resourcefulness in her plans to address bullying in the school newspaper. During the course of this project, she opens up to some of her friends and learns about the support she can receive, while getting to know their stories. I was surprised by the emotional impact at the end of the book, when all Jenny’s hard work paid off. One could see her mature in the pages of her secret diary.
In my case, I grew up in the 1950s and 1960s with a very low functioning, nonverbal older brother. This was quite a different situation that the one Jenny experienced. There was more chaos, fewer victories, more held-back feelings and certainly less general awareness of autism back then. Thoughts I had were much darker and prospects were bleaker in the era of the ‘refrigerator mother’. I know of siblings today who feel strongly about the impossible situation they feel they are in, with such impaired brothers or sisters.
The Invisible Cord hits many of the right notes in Jenny’s story of success. Barbara Cain emphasizes the helpful strategies that Jenny used, in ‘Notes to Readers’ at the end of the book. This summary could be very useful to teenagers with autistic siblings. Parents should be aware of this book and pay heed to the suggestions in the ‘Notes’ section. In particular, they should consider professional help for their non-autistic children who have strongly negative feelings and might not be receptive to the positive message of ‘Autism, The Invisible Cord’.