"What's wrong?" ... unraveling medical mysteries

An incident from the early days of my autism practice sticks in my mind. I went to see a young boy with autism for a therapy session and he was lying on the couch, listless and unresponsive - this was about the fourth week he had been in that state. When I asked his mom if she had taken him to the doctor, she said yes, for all the good it had done. Apparently the doctor told his mom "What do you expect? He has autism". The mom's comment to me?

I could take him to that doctor bleeding from the head and missing one leg, and the doctor would tell me it was just the autism acting up!

picture by Owen 2012

A diagnosis of autism doesn't give a person immunity to all of the other illnesses and ailments that are unfortunately part of the human condition. In fact, some types of medical problems seem to be more common in the ASD population than in the general population - allergies and food sensitivities, gastro-intestinal problems, and seizures, to name a few.

Diagnosing illness in less verbal individuals with autism is extremely challenging. They can't tell you what hurts, how long it's been hurting, how much it hurts - all questions that the doctor usually asks in a diagnostic medical appointment. They may not even know that the way they are feeling is abnormal (as far as they know, maybe everyone's head hurts and it's normal to feel sick after you eat).

We had a recent medical situation with Adam that highlighted this problem:

drawing by Adam

As I've mentioned before in this blog, Adam has multiple allergies and sensitivities, including seasonal disintegration every spring, and to a lesser extent in the fall. So when he was "fuzzy" and having trouble with learning this fall, we put it down to a reaction to the unusually warm and prolonged seasonal change.

It got worse. He became sluggish and reluctant to do anything. He didn't want to get out of bed. He started to complain that things "hurt", but couldn't really say where.

Then he went to the dentist for a regular check-up, and we got a "puzzle piece" - his wisdom teeth were pushing in, and the dentist said that he would be having pain related to that. The dentist wanted to monitor the situation, and said that the wisdom teeth would likely need to come out within the next year.

So, we drew the situation out in his next therapy appointment, and made two visual cards (for posting on the wall) that he could use to let his parents know when he was having pain, and when he might need to go to the dentist and get the teeth extracted:

drawings by Adam 2011

We thought we had solved the problem ... but we were wrong.

Adam's symptoms multiplied and became more severe. He was sensitive to light, so we wondered if he was having sinus headaches or migraines secondary to his allergies. We made more "I don't feel good" cards to try to help him define what was wrong:

drawings by Adam 2011

And things kept getting worse.

He was barely interested in Halloween (his high holiday). He showed no interest in his up-coming birthday or the lead-up to the Christmas season.

We continued to draw his way through pain and suffering and doctor's visits and specialized medical procedures - experiences that are made worse by a person not knowing what's going on or what to expect next. Here is one of the drawings where Adam explained to us where he was feeling pain:

Long story short ... it turned out to be kidney stones ... not one of the pictures we had drawn, and not something that was "short-listed" (or even on the list) as a possible cause of his pain and distress. Not a "guessable" disease.

Moral of the story? You can't explain everything that a person is doing or feeling by invoking the word "autism". It's not usual to feel sick and sore and distressed every day. You will have to search to find medical professionals who are knowledgeable enough to look beyond the ASD diagnosis to discover and treat the other physical illnesses and ailments that are causing the pain and discomfort. When an ASD person is less verbal, your challenge is multiplied, because they can't tell you what's wrong, and you can't easily tell them what to expect in the unknown world of doctors and hospitals. Drawing helps - it still takes time and effort to solve the mystery, but drawing provides a communication channel to exchange important information.

The good news is that Adam is now on the other side of this episode, and seems to be more himself again. In late January, he made up for lost time and put together his birthday Lego sets, then watched a slew of Christmas videos. He got back on track with his learning, and we had some very productive sessions.

The less good news? ... we've had an early spring thaw, and yay, it's allergy season again!

oh well ... to paraphrase Tina Turner: "We will survive!"