Autism is now a daily news topic, but siblings of people with autism are still rarely mentioned. Since I wrote my own story on this topic - How to be a Sister: A Love Story with a Twist of Autism - I read whatever I can on the subject.
Last week Julia Rothwax posted about watching the Temple Grandin biopic that premiered on HBO last month on her The Daily Beast blog. Her post remarked on the absence of Grandin's sister in the movie and used it as an opportunity to discuss how siblings of children with autism - including Rothwax herself - are often neglected in family life as autism saps the parents' energy.
Rothwax wrote kindly and yet candidly about how difficult it was for her to grow up with her brother, who has autism. She offered advice to parents of kids with autism: "Remember that your non-disabled children are as deep into the experience as you are. This is their life and their childhood...Be aware that your child needs help dealing with all aspects of the situation, including how to talk to peers...Please don't forget to enjoy alone-time with your non-disabled child, for your sake, as well as your child's."
Rothwax's advice is nothing that I have not heard from many experts in this topic, including Don Meyer, director of the Sibling Support Project, and Dr. Sandra Harris author of Siblings of Children With Autism: A Guide for Families. I've offered similar advice to parents of children with autism when asked what they could do to help their "other" kids.
Yet Rothwax's piece received some stunningly ugly responses. One reader called her called self-centered and selfish. Another lashed out at people who wrote in positive comments, and another suggested Rothwax "shut up until she learned something about autism."
Happily, more readers weighed in on this discussion in support of Rothwax's story - other siblings like her, parents of kids with autism, and even a person with autism who wondered how her disorder had affected the lives of her brothers and sisters.
I suspect that the negative responses had little to do with the topic - autism - and had more to do with the venue - the Internet, where people can say whatever they like anonymously.
This episode underscores the need to support siblings. For years we have been unable to speak the truth of our experience and say, simply, this was hard for me too, this was my childhood too, and now, this is my adulthood.
Rothwax herself counsels siblings to support each other: "Finally, a message for my fellow adult siblings: we need to continue to communicate, organize, and advocate. We need to support each other, emotionally and practically. As our parent's age and die, we are going to have to face the overwhelming challenge of becoming the primary caregivers for our siblings. We will need to help each other."
I could not agree more.
We have more resources than we used to. More brothers and sisters are writing their experiences, and organizations like Sibling Support Project, which was started to help children, are beginning to look at how they can help adult siblings with the challenges they face.
I keep an ongoing list of such resources at on my website. I'll add Roxwath's name to the list, with gratitude.
