Wednesday, December 5, 2012

Autism - The Invisible Cord: A Siblings Diary




Last week, I wrote an essay challenging Time Magazine’s choice of a title for its story on siblings of kids with autism.  I believed calling the siblings “autism’s invisible victims” was inappropriate and offensive.

The disgust I felt over the title choice overshadowed the article itself, which made many good points if one could get past the demonization and victimization.

The author of the story – a psychologist named Barbara Cain – had previously written a book called Autism – The Invisible Cord: A Sibling’sDiary.  I decided to download her book and see how she described life as an autism sibling.  I wondered what I would find.

I read the book in an hour, and all I can say is, what a delight!  It’s a sweet and gentle account of Jenny and her life with Ezra, her autistic brother.  There’s not a trace of victimization in the book and indeed I recommend it highly to anyone who has a sibling living with autism in their life.

Barbara’s story – told in the form of short diary entries – really shows what is feels like to grow up with a brother who’s different – the joy, the hurt, the desire to protect him and the hope he will grow up and make a life on his own.

Reading her words, I thought of my own childhood, and that of my son, who also has autism.   If we’d had sisters, would they have been like the Jen of the book?  I hope so.

Kudos to Barbara for a wonderful story that any sibling or family could treasure.

You can order her book here and find her @BarbaraSCain on Twitter

9 comments:

Kathleen Tehrani said...

Hi John,

I wasn't very pleased about the"Victimization" article either. How nice that you took the time to look deeper into the person behind the article....give the benefit of the doubt that one poorly chosen usage of terms does not a "character" make.

Hopefully the autism community is ready to turn a corner and look for the good in one another as you took an extra step to do in this account. Well done and thank you for posting.
~Kathleen

Kathleen Tehrani said...

BTW....where's my "Ear Wiggling?"

forsythia said...

SOLD!! Got to Amazon just in time to get the last one in stock. (Amazon will stock more.)

Valerie said...

Thanks John for taking the time to look deeper. We need more people today who will do that (and i wonder if she even chose the title herself.)

Jen said...

I just looked at the great reviews on Amazon, but couldn't find an age range for the book. If you've read it, can you tell me if I could read it with my seven year old daughter (whose brother is on the spectrum). She could probably handle a book that's up to the level for nine-year olds.

Jen
happyfamilyorbust.com

John Elder Robison said...

Jen this book is narrated from the perspective of a 16 year old

Jen said...

Thanks - Maybe too old for my daughter, but I might get some insights.

Dana said...

Hi John!
I just wanted to let you know that I loved your article about how the media is blaming Aspergers for that terrible tragedy in Conn. You took the words right out of my mouth, and I thank you for writing that article. As a mom of a beautiful, sweet, smart and loving 10 year old Autistic boy I really appreciated that article. Do you have any books that can help me with coping with his emotional issues? He recently started new seizure meds, so I'm not sure if its that. But, hes just been emotional/hormonal. Any suggestions on some good reads would be great! Thank you, Dana :)

Lauren said...

John,
I work with a young man that has within the last year been diagnosed with Aspergers. He's struggling with the decision to return to college. He's one of the most talented young men that I have ever had the privilege to know. Sometimes he is too smart for his own good. He started researching how being diagnosed with this could affect a future for him especially in a career mindset. His writing blows me away. I'm trying to do some research of my own to find people living with Aspergers and leading a successful life. Can you provide me any thoughts or insight? He feels like he is alone with Aspergers and I'm terrified of what this mass media situation would do for him. He really needs positive influences not more negativity. Sometimes he doesn't see the fact that he want diagnosed until age 19. He just feels like that label has cost him his future. Any advice would be much appreciated. Please email me at lpilgram {@} gmail.com Thanks for taking the time for this!!!