Life, death, and autism

Last month, two of our adult clients lost their parents. Joey's lovely mom died after a long decline, and Vanessa's very kind step-father also passed away. Both were elderly, and while their passing was not unexpected, it is still sad and gives us pause. It  brings to mind a constant, consuming thought always present for parents of people with  autism - worries about their inevitable death and what will become of their child when the parent dies. Who will care for them? And more specifically, who will care for them the way the parents do? Will others delight in their peculiar proclivities or will they find them frustrating? Will their unique interests and obsessions be allowed or will they be considered too narrow, irritating, and therefore something to be changed or eliminated? 

Because of the many behavioral challenges of people with autism, (which family members are accustomed to and usually know how to get around) parents worry about how accommodating others will be when their kids do something that might be annoying, let alone destructive. Will others still find that darling little boy cute after he has poured laundry soap all over the living room couch? What about the young woman who will absolutely refuse to leave her home without her backpack of special items regardless of where she is going or if you are in a hurry? Or the man who screams frightfully whenever someone coughs? What about the woman who wants to photograph every activity in which she participates, taking up considerable time, while insisting people pose in seemingly unending combinations? Will people still be nice to them, even when understandably exasperated by these behaviors?

Joey, who is in his mid-forties, still lives at home, as his parents decided to take care of him as long as they were able. So even as his elderly mother required more and more care, Joey was always at school, neatly dressed, with his lunch made, and ready for the day. Vanessa's parents decided to place her in a group home several years ago. Many of our parents of our adult clients have their children still living with them, and the decision to place their child even when there is no other option, can be heart wrenching. The agony parents go through is excruciating to witness. But even with a group home placement, parents and families are still very involved in the daily activities and general welfare of their children. That will never end  - and neither will the worry.