One of the (many) things I hate about autism
is Ryan’s severely diminished ability to communicate his wants and needs to us.
What is particularly terrifying at times is his inability to tell us when he is
sick or hurt.
Add to this the fact that Ryan appears to
experience pain in a somewhat different way. I’m guessing here, because he
can’t tell me, but Ryan has shown up with bruises and scrapes I don’t always
know how to account for and this leaves me feeling guilty and sometimes like an
all-around bad mom. Other times, I just don’t know he’s even hurt himself.
For example, back in November Ryan was
playing in our back yard—on the play set, trampoline and walking around the
pool area. I was watching him as he did this. As he was about to walk in the
door to the house, a shady area, he suddenly stiffened and began screaming. I
had no idea what was going on. He doesn’t usually cry like this when frustrated
or overstimulated, but I hadn’t seen anything happen to him. I picked him up
and calmed him down and he went about his business.
Later that day, I picked him up to wipe his
feet and saw the soles were covered with angry-looking blisters. Apparently, he
had burned his feet on the decking around our pool (it is hot in Hawaii in
November). He didn’t react while standing there, so I didn’t realize his feet
were being burned. It was only when he started to come in the house that the
pain hit him—again, I’m guessing.
This is one of the challenges of autism.
Because he doesn’t experience pain in the same way an NT person does, sometimes
I don’t realize he’s hurt. I know when a surface is too hot for my feet because
I feel it immediately; Ryan does not.
There are other aspects to his inability to
communicate pain, injury or discomfort. Recently I had to take Ryan to the
doctor for an odd bump in his head that had been there for weeks. The nurse
asked me all sorts of questions—when it happened, how it happened…questions I
couldn’t answer.
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Interrogated by nurse... |
“So you are telling me Ryan was injured while
unattended?” she asked, her voice
rising with what seemed like an accusatory tone.
“Well, I’m not with him 24 – 7,” I said. “I
do go to work. I don’t know what happened.”
“So you’re alleging abuse then?” was her next
comment.
Whoa—what a leap and although perhaps she was
doing her job, this nurse had made me very uncomfortable by this point…either I
was a neglectful mother for not knowing why my son had a lump in his head or
his teachers and aides or au pair might be abusing him. Either way, I was
concerned she would recommend a visit from child protective services.
Fortunately, the doctor came in right about
then and quickly diagnosed his bump as seborrhea, possibly caused by a fungal
infection—child abuse or neglect implications eradicated. Prescribed a topical
medication that required Ryan to sleep in a shower cap, but by day 3 it was
gone.
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Ryan in his shower cap...he handled it better than I would have! |
I told Ryan’s IEP team at school we have got
to teach him to tell us when he’s sick or hurt. The incident with his feet and
the mystery bump served as motivating reinforcers for me—if you’ll pardon the
ABA-speak--that this should be an immediate priority. His autism teacher came
up with the “Hurt Program” in response. His team, us included, are working on
teaching Ryan about being hurt, telling us he’s hurt, and pointing where—all of
which is totally natural to an NT person, but not for Ryan.
Last week we took turns smearing ketchup on
ourselves, pretending to cry and teaching Ryan to ask, “What’s wrong?”, to
which the “injured party” would then simultaneously sign and say, “hurt”. We then worked on teaching Ryan to ask,
“Where?” and taught him to point to the area. We then put band-aids on our
“wounds”. I think it is starting to sink in for Ryan, at least I hope so.
We had some laughs while enacting the Hurt Program,
but it really is serious business. Ryan has got to learn to communicate when
he’s sick or hurt, or perhaps even more important, when someone has hurt him—an
autism parent’s worst nightmare.
Because these kids often can’t communicate,
certainly there needs to be vigilance in looking for signs of abuse, and I’ve
written about horror stories of abuse of autistic children, often at the hands
of caregivers.
That said, physicians and their staffs need
to learn about autism, and realize these kids experience pain differently, and
because of disregulation of their vestibular sense (balance and equilibrium),
often seek to engage in dangerous climbing and jumping behaviors. Abuse or
neglect should not be the first conclusion drawn. There are cases of doctors
and social workers mistaking symptoms of autism as signs of parental abuse.
More on that issue at a later time.
For now, I just want my little boy to tell me
when and where it hurts…
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