Last week, we had a series of lectures on health and healthcare for people with disabilities. It began with a brief introduction lecture after which we were divided into small groups designed to teach us about what it might feel like to have a disability. Each group attended a panel discussion about living with a disability (mine was on children with autism) and a simulation lab of some of the difficulties of specific disability (mine was on swallowing disabilities).
In the swallowing simulation we had to do an exercise where we held tongue depressors between our teeth on the right side, and had to try to eat yogurt using just our left hand in order to mimic what eating after a stroke would feel like. It was not easy and definitely not a pretty sight; it turns out, when you can't close your mouth all the way, you produce a lot of spit that comes straight out of your mouth and drools all over your shirt. There were other groups that had to race around the medical school in wheelchairs, only to discover that one of the elevators was permanently broken; another group wore different glasses distorting their vision while navigating through a cafeteria.
The panel I attended was with four other students, and two mothers of children with autism, one who had brought her son. Having just had a lecture on autism, it was awesome to have REAL people talk about their REAL life experiences. One of the mothers talked about how kids with autism present differently because they are attuned to different senses. For example, she did a mock case with her son where he came in and said, "my tongue hurts". So like the good medical students we are, we started asking him questions:
when did it start? (a few weeks ago)
does it always feel like this? (a lot of the time)
when does it hurt? (mostly at night time)
what makes it start hurting? (mostly night time; I wake up and have to touch my tongue)
what does it feel like? (really hurts on my tongue)
does anything make it feel better? (sitting up, sometimes, and touching my tongue)
does anything make it worse? (dunno)
has this ever happened to you before? (nope)
except what we didn't ask him was: does anything else hurt too?
(to which he would have replied: my stomach - because what he had was acid reflux but because he was so sensitive to the sensation on his tongue, he didn't mention any burning pain in his abdomen. so cool to think about, also because I think probably a lot of kids don't present with the same symptoms as adults.
mom to her son, who is an autistic 2nd grade: "honey, there are all these terms for kids with autism. do you want to be known as 'an autistic kid' or a 'kid with autism'?"
son: (thinks really hard for a moment) "I want to be known as a kid with autism AND ENTHUSIASM"