When our Kids are Sick
- Posted on 15th May 2014
- in Autism, illness, insurance, medical necessity, Theory of Mind
- by Michelle McFarlin
Medical Necessities Part 1
My kids started getting sick on the day of our Easter debacle, and it went on for WEEKS. Even though it was initially “just a cold,” colds are instruments of torture at my house. And it’s never really, “just a cold”; colds become sinus infections and ear infections, so it’s the gift that keeps on giving. And when they don’t breathe, they don’t sleep. When they cough, they don’t sleep. When they don’t sleep, I don’t sleep. To add to the joy, when they cough long enough and hard enough, they puke. So, that in and of itself is AWESOME, though I now have some impressive Ninja moves to get the trash can to its target location in time. On top of that, when they’re sick, there’s no school, or play dates, which means Mommy is a 24/7 nurse/chef/maid with no breaks. And that’s motherhood for ya.
All that being said, my kids have finally reached the point that they can at least tell me what hurts, so I’m lucky. For a child with autism (or a very young child), who may have limited language abilities, being able to understand the word, “hurt,” (or even the concept of “hurt,” or the ability to identify what feels bad as being “hurt”) poses an additional challenge for parents and doctors, not to mention the kids themselves. In insurance speak, being able to report symptoms and express pain is a “medical necessity,” and by extension, should be a priority in an expanding core vocabulary.
Introducing the word, “hurt,” and knowledge of terms and locations for body parts to your child is a great first step to helping them be able to report their symptoms. The next step is giving them a means by which to do so. I’ll get to all of this in my upcoming blog posts.
**If your insurance plan doesn’t cover speech therapy, try talking to your company’s HR agent about the medical necessity of your child being able to report symptoms and express pain, and how speech therapy is vital to the development of that ability.
Theory of Mind
When our kids hurt, we hurt. But how do you begin to teach a child with autism how to express pain???
“Hurt” is an incredibly difficult concept to teach because we can’t actually feel our children’s pain they way they do. (Well, clearly, we do feel it, but we experience it differently.) Therefore, unless they can tell us (which they can’t always), or we can see a situation in which we can intuit that what just happened would hurt if it had happened to us, or if they are crying, we don’t know when they are hurting. And the reverse is also true.
Our ASD kids don’t know when we hurt unless we tell them, or when they can figure it out. For a person to be able to intuit the pain of another, they have to be able to take the perspective of the other person. Being able to take the perspective of another person requires the knowledge that others have their own minds, which have things in it happening in it that are different from what’s happening in my mind, and that they might have thoughts or feelings about things happening that are different from my thoughts and feelings. First described by Simon Baron-Cohen, this ability is called Theory of Mind (ToM), and it is at the heart of many of the deficits we see in our Autism Spectrum Disorder kiddos.
The result of a deficit in Theory of Mind is what is often described as a “lack of empathy.” These kids don’t appear to have empathy for people, not because they don’t love or care about them, but because they can’t relate to your experience as being different from their own. Therefore, when they see someone else crying, they might smile or laugh, or just act confused, because they ARE confused. In their mind, they are trying to work out, “why are they crying? I’m not hurting.”
So, that’s obstacle one. Current research is showing that it’s not just a “you have it or you don’t” ability, but rather it develops in stages like everything else. I’ll talk more about this in future posts, along with research-backed therapies for helping develop theory of mind. But next up, we will talk about unpacking ways in which we can teach our kids how to express pain. Stay tuned!