“Gather and Confer: Aur Kitni Baar Part 2”

The second talk I attended at Autism New Jersey’s 2017 conference was “Interventions to Support Siblings and the Sibling Relationship” by Emily Jones and Theresa Fiani.

There was no indication from reading the abstract that this was primarily a talk about younger children. So other than a walk down memory lane, I really didn’t find it all that helpful, though the speakers were excellent and crisp. Also, you guys already know that random preventable noises annoy me, so yes, there was a horrible bracelet tinkling behind me, and a rather loud, booming talk that was completely audible from behind a flimsy retractable panel that made me twitchy. While I am grousing, let me also say that there was a huge emo-parent hijack quotient as well—basically, parents who don’t actually have a question, and just want to talk about their kids during the Q and A. I left that session before it ended because of it.

As a brief summary, the two speakers run a program called SIBS Club, which aims to foster a lifelong rapport between autistic and neurotypical siblings, by providing support groups and sibling training. The goal is also to better the mental health of the NT sibling so that they do not always feel shortchanged. Listening to the talk brought back memories of those early years, and left me glad that we had provided similar opportunities for R.

Some sweet and poignant recollections flitted through my mind. R always teases me about how I said, “It might take A a few weeks to learn to talk.” And how R used to say that A didn’t like him, and once, how I sobbed with grief and guilt when he told someone solemnly, “I want him to want to play with me.” Also, as both kids have grown older, how we have had to draw some boundaries for R, so that A doesn’t clamber all over his life and leave him with no oxygen. A tried to colonize R’s room and make rules in there, and was outraged when we said sorry man, it’s not your room. Now, other than to go to R’s window and watch the sunlight filter through the leaves of the oak tree outside, he never goes in there. R is now old enough to babysit a little, and A once managed to foil his sibling’s authority by inducing vomit so that we had to come back home.

The speakers were forthright about some of the limitations of their efforts, and the steps they have taken to address them. For example, the degree of severity of autism does impact the ability of the siblings to benefit from the group. Also, it requires a large involvement by a moderator, which of course can be addressed by transitioning that role to the parents. There is also additional responsibility placed upon the NT sibling, whereby attending the group can become an added burden, one more thing that is about their already high maintenance sibling.

To me, as a parent, what I find unavoidably painful is that in a way, we are forced to teach the NT sibling how to proxy-parent. What other choice is there. They cannot interact fruitfully unless they learn these skills. Also, there is a by-rote quality to interactions in autism families that I am still coming to terms with after all these years. If that is not PC to say, so be it. It is my lived experience as a mom, and I have no qualms expressing it.

The speakers mentioned that there are programs such as Super Siblings that are run in public schools by guidance counselors, which offer similar access to this sort of skills training for siblings.

I will end on a silly note. The talk was very much aimed at fellow professionals, and the speakers used a lot of jargon. At one point, one of them said that the typically developing sibling may have trouble adjusting to the group if they have BAP. I didn’t want to interrupt, so I googled it, and did you know, BAP is the name of a K-pop band. Haha. Anyway, I learned during the Q and A that it means Broad Autism Phenotype, so there you go. 😉

I have a couple more talks to summarize, which I am enjoying writing up, and I do hope you are enjoying reading. More later!

Radha.