The point at which autonomy should be handed over to the child is less clear when parenting children with cognitive disabilities. It is one thing to insist a 2-year-old submit to a diaper change even if she is unwilling. What about when the person is 5? 7? 15? 22? Caregivers are often on their own in figuring out that fine line between granting appropriate autonomy and ensuring safety so that the highest degree of autonomy may eventually be achieved.

“Having a 15-month-old in a 6-year-old (or 22-year-old) body poses many dangers most people never have to consider,” a Texas mother of a 6-year-old boy with limited communication skills and behavioral challenges says in a text message. Her son’s room is unlocked but he sleeps in the same kind of tent my son does. His tent is the only place in which his parents feel they can ever leave him unsupervised for a moment. Their house has a catwalk at the top of the stairs and while she has concerns about fire safety, she is more worried about the safety of her child when he wanders. “I have nightmares about him throwing his body over the railings on the catwalk,” she said.