autism goes to the doctor

I found out recently that our insurance will cover occupational therapy with a referral from our primary physician. I was pleased to learn that because Bede’s never had professional therapists beyond our yearly consult with his psych. But getting the referral required us to go to the doctor. Hmm.

My mom has been very busy for the last month so I waited for her to become available again and then made my call.

Phone lady: Has he been seen here before?

Me: No, you’ve seen his siblings.

PL: OK, we can see you at 3:30 on…

Me: Could you give us a time where we don’t have to wait as much? I mean, I know nobody wants to wait but he’s autistic and he’s going to be screaming pretty much the entire time he’s there.

PL: (nonplussed) Well, um, how about 1:30 on (several weeks away)? And that will be Dr. Name’s first appointment that day, he does afternoons.

Me: Excellent!

So today was the day. Sean went and got the new patient paperwork beforehand and we just handed it in when we got there. Then we waited. Bede tried to turn the tv off and on. He tried to take every magazine out of the rack. He tried to take off his shoes and clothes.

And he yelled the whooole time.

It’s the looks that get you. I understand people looking. Hell, I’d look, hear a kid scream “NOOOOO!! DO YOU WANT TO SEE THE CAR? DO YOU WANT TO LET’S GO HOME? OKAY SURE I GETCHOO LET’S GO HOME!! NOOOOOO!!” but the continual weight of the stares, the shock and disgust and the not looking away part. Well. Urgh.

Then after about 5 minutes in the waiting room we went back to the exam room. Bede was unable to be weighed because he wouldn’t stand on the scale. He’s very tactile defensive especially about his ears so no go on the temperature reading. When we got to the room he climbed up on the exam table and started taking the disposable otoscope covers out of the dispenser. When dissuaded from this he became upset. More yelling. The nurse left and said the doctor would be right in.

When he came in his eyes widened a bit at Bede and he said, over the din “I’m Dave. Nice to meet you!” He sat down (as I detached Bede from the dispenser again) and said “I understand you’re here for a referral for OT. You’ve got it.”


Then he wanted to talk about Bede, who was at this point basically insane. He was amazed that Bede could read and write yet not converse and said “He’s like a savant!” He took a history and then left, somewhat shell-shocked. He came back in to ask “Do you immunize?” I got the same general impression I have always gotten from that clinic: no problem, let us know what you’ve decided. We think vaccines are good and safe but it’s up to you. (Regular readers of my blog will recall that we vaccinate very selectively on a highly delayed schedule.) So that was nice to not feel bullied. They also have the individual vaccines there, the nurse told me, for those who want single shots vs. multidisease ones.

Then we left. Bede declared that he wanted McDonald’s so that’s what we got. And that brings you up to date, OT here we come!

13 thoughts on “autism goes to the doctor

  1. That’s awesome…that you got your referral, but crappy that people have to continue to stare.

    Because of Elijah’s ‘sensory integration issues’, he’s ALWAYS moving and bumping into me or whatever is nearby. I get people saying to me, “Man, does he ever stop moving?” And with a smile, I almost always answer, “Oh, should he have to stop? I mean, I wish I had his energy and wish I could be a kid again.”

    It stops the stares and stupid questions 🙂

  2. Yay!

    But really ‘He’s like a savant’? LOL

    I wouldn’t stare. Much. Mostly because I’d be too busy keeping Bre from licking the magnetic table.

  3. Or maybe we’re savants! Heh.

    ETA: Hyperlexia is a savant skill actually. I didn’t know that! Huh.

  4. It always gets me right in the heart when you talk about Bede saying things like, “OKAY SURE I GETCHOO LET’S GO HOME!!”

    But yay for getting a referral for OT!

  5. Job, my Aspie (SID and loads of socialization issues), was a *completely* different kid after OT techniques like Wilbarger brushing and the “How Does Your Engine Run?” program. So happy to hear that Bede is on his way! Woo hoo!

  6. My favorite part was when I was standing in front of the exam room door, guarding it so Bede could not escape the room.

    He came and very nicely tried to push me aside, and said very earnestly, “Bye Bugga, let’s get OUT!”

  7. Hey, awesome that you got the referral.

    I used to HATE taking Josh in to get his seizure med levels checked. He completely, totally, absolutely wigged out every time. It wasn’t uncommon for me to get kicked, punched, screamed at, and every other unpleasant thing to happen when we had to do that. I seriously cringe when I have to take him to a doctor’s office. We’ve got to take him to a dentist soon, and I’m going to suggest right up front that they knock him out before they touch him.

  8. “the continual weight of the stares, the shock and disgust and the not looking away part. Well. Urgh.”

    I can believe it. I think also that it must in a way alter your perception of other people a bit…?

    One thing that happened to me that sticks in my mind is an incident at the SI Zoo.

    Ana (no Evangeline yet) was in the sandbox, playing. Somebody else entered the sandbox from behind me. Whoever they were, they were speaking in a very high-pitched voice, doing repetitive math problems (and getting a lot of them wrong, but that’s beside the point).

    I dislike not knowing exactly where a sound is coming from, so after a minute I turned around, identified the talker as a small child, and turned back to my book. Whole thing took less than five seconds.

    Not fast enough for the mom, who demanded “IS THERE A PROBLEM?”

    Well, honestly, there wasn’t a problem. Something about the quality of the kid’s voice *was* grating on my nerves somewhat, but what was I going to do, ask the kid to stop talking until he entered puberty and his voice deepened? C’mon. So I go “Nope” and try to go back to my book.

    “Well, he’s autistic!”

    Which is the point where I snapped and turned back with a “Yeah, so am I”, something I try *not* to pull out on random strangers in real life. Oy.

    And all I did was look at her kid long enough to see that he existed.

  9. That sounds so much like Zane before OT and at about Bede’s age. Everything from the waiting room antics, not letting himself be weighed (if they really insisted we would hold him and stand on the scale, and then they subtracted our weight), and a DEFINATE NO for having his height measured and ears looked at (seriously defensive with anything touching his head at all).

    OT made all the difference in the world for those issues. Seriously, it is like a different kid now. (or more acurately, like he is able to maintain who he is through stress instead of falling apart) The last appointment he took the otoscope and put it in his own ear to show the dr that he knew what it was for. I would have never beleived that was possible when he was Bede’s age.

    OT will also help with getting more “acceptable” strategies for defensiveness. For instance, now that he isn’t as defensive with anybody touching his head, he will put on bucket hats that help block out the visual stimuli.

    Those stares suck ass. No nice way to say it. Some days I feel like I live in those stares. The one good thing to come out of it is that I have grown better at not letting it bother me. It has made me braver even for stupid things like taking pictures of something because I want to and not worrying if people will think I am a freak for it. It was a weighty learning curve though.

  10. sorry for the serial comments….

    This is where I employ the “plug in strategy”. I bring along something that he can plug into and shut out the outside world…the laptop, a gameboy, even a book works sometimes. Doesn’t always work completely, but it often helps, especially if the wait is long. As a testiment to how much better thing like that go when he has a plug in item, usually Zora is more difficult in those situation than Zane at this point. lol.

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