Last fall I wrote about parenting advice columns and how foreign and inapplicable the content was for special needs parents. But even when advice is supposedly specifically tailored to parents of children with autism, it can be laughably off-base.
Take this article about explaining the death of a loved one to a child with autism. This one hit close to home because my father died about a year and a half ago. Also just recently my daughter’s BFF Grace, who is also on the autism spectrum, experienced death for the first time.
In her case, it was her elderly neighbor Harry whom she barely had any contact with except for when he chased her away from his bird bath. But that didn’t stop her from becoming completely obsessed with his sudden disappearance. I forwarded this article to Grace’s mother as soon as I saw it, knowing that she would get a big kick out of the advice.
The article reminds us that children with autism can be very literal, so recommends that you stick to the facts and just lay it right out there: “He had a heart attack. That means his heart did not work anymore." The author recommends this directly after acknowledging that autistic children are not unemotional robots, but actually experience the full gamut of emotions just like anyone else. Anyone see a problem with this? Here’s how it played out for our friends:
Grace: “Why did Harry die?”
Mom: “Well, he was old and when you get old sometimes your heart stops working.”
Grace: “But wasn’t he in the hospital?”
Mom: “Yes, they tried to help him there. They tried to keep his heart working, but they couldn’t.”
Grace: “How did they try to keep his heart working at the hospital?”
Mom: “They gave him medicine and they put him on some machines, but then they decided to turn the machines off.”
Grace: “Why did they shut the machines off? Did the hospital kill him? Does everyone who goes to the hospital die? Will I die if I go to the hospital?”
Grace is now mortally afraid of hospitals, thinks her mom is going to die if she so much as clears her throat, is freaked out by colloquialisms like “broken-hearted” and is reconsidering her enthusiasm for having birthdays and getting older.
The next piece of advice is to incorporate your religious beliefs into any discussion about death: “Don't be afraid to explain the concept of heaven, just use clear and concise language.” Yeah, don’t be afraid. Just be clear and concise. About heaven.
Grace’s mom knew her daughter well enough not to go that route, but Harry’s well-meaning widow weakened under a bombardment of questions from Grace and told her that Harry was very happy and in a better place in heaven. Grace then skipped on home, thrilled at the thought that she’ll surely be running into old Harry when she goes Disneyworld over spring break.
This led her mother into a discussion of the human body as a vessel for the spirit and soul of a person—with the body being buried but the spirit rising to heaven—and then quickly regretting it and wishing she could scrub everything she’d just said from her daughter’s brain when she started screaming about not wanting to ever be in a box in the ground.
Mom (exhausted): “The next time you see Mary, just say that you’re sorry about Harry and leave it at that.”
Grace: “Why, was it my fault?”
Mom: *facedesks herself unconscious*
I know that parents of typically developing children might say that explaining death to their kids is just as difficult, and that they might very well react in a similar fashion. And while it is certainly true that death is one of the hardest concepts for anyone to grasp, typical children are probably not as likely to obsess over it to the degree of a child with autism, and far less likely to approach random senior citizens in the park, fondle the chicken skin under their upper arms and ask them if they’re going to die soon.