Shannon Des Roches Rosa
Update: I now know there is such a thing as competing access needs, and that this article is not entirely fair to Leo’s siblings. Please see our 2018 article Understanding Competing Accessibility Needs for more context. -SR
|Photo © Shannon Des Roches Rosa
[image: Young white teen girl whispering into her brother’s
ear. They are seated on a picnic table in a park, surrounded
by family reunion attendees all wearing light blue t-shirts.]
Thirteen-year-old Iz is a wonderful big sister to Leo, who is just 21 months her junior. This photo is of the two of them at a family reunion earlier this month; she’s letting Leo know that the group photos won’t take that long, explaining that if he can just sit for one more minute, then he can go back to the playground, and that he’s being particularly awesome and patient (which he certainly was — family reunions are chaotic and make routines difficult to maintain).
I don’t have a photo of Iz and Leo from last week, when she got into a teen defiance spiral in the car, and wouldn’t stop yelling, wouldn’t stop shrieking even when I said she needed to stop because she was upsetting Leo. He ended up losing his temper completely and whomping her. That’s not an image I want to save.
After everyone had calmed down, she cried and cried and said she was sorry — but she also said it isn’t fair that she has to behave in certain ways so Leo won’t get upset. I said I was really sorry he hit her, and I was glad she was OK — but that the situation was completely preventable. I reminded her that Leo has both sensitive hearing (yelling is painful) and extreme emotional sensitivity (if other people are upset, he becomes even more so and will do anything to make it stop). Getting upset was not his fault. If we want to help him control himself, we have to control ourselves. It is never acceptable to hit, as Leo knows full well. It is also never acceptable to yell the way she was yelling.
Accommodation is part of being part of an autism family. It’s what we do. And while we may wish things were easier for Leo because it is hard to be intensely autistic in an NT world, and while I understand that it’s not easy for kids and even parents to have to change their behaviors for another child’s sake — accommodating others’ needs is the deal in any family. It’s just that accommodations can be more obvious when a family member is disabled. And, because our society stigmatizes disability, it is too easy even for kids who have been raised to view disability as difference rather than defect to lapse into thinking of sibling dynamics that require self control as … unfair.
I told Iz and Mali that it’s OK to discuss those situations that are hard. But I also told them it is not acceptable to blame Leo, or resent him, because of circumstances over which he has no control or which are part of his autism. (They are welcome to chastise him if he steals a piece of their pizza; that’s a blatant jerky brother transgression.)
Pizza-thieving aside, Leo is generally doing his best. He’s become very good at coping with and understanding Neurotypical-land, and making himself understood. He just got through a week of busy family gatherings. His sisters know he’s a capable guy. They just need reminding to support him as best we can, to make things Leo-friendly, to avoid avoidable crises. He accommodates them, all day long, even if they don’t always notice. He deserves nothing less than reciprocal — fair — treatment.
A version of this post appeared on www.squidalicious.com.