"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!"

3 more videos added to the YouTube channel!

Hi everyone!

Quick post to let you know that there are three more new teaching videos on our YouTube channel AUTISMartCOMMUNICATE :

1. Part 2 of the "how to weave" video ... for all of you out there with unfinished pot holders!

How to weave (part 2) - finishing the edge

2. A video demonstrating how to use a "follow me" approach to teach young children how to draw:

Drawing with young children - part 1

3. A video demonstrating how to use a "follow me" approach to teach new art media and techniques to less verbal ASD individuals:

Teaching Art & Communication - "follow me" pastel drawing

We would appreciate your feed-back as we expand our library of reference videos. Don't be shy to let us know what you think!

Sheila B

Another video on the YouTube Channel!

It's difficult to teach individuals who are very bright, but compromised in their ability to understand and use verbal language. The challenge is to teach to the level of the intellect (so that the person finds the learning activity interesting and engaging), while not overwhelming the weak language processing.

You can go around weaker language skills by presenting concepts and skills visually, with very simple language (written and verbal) used to highlight key information. Video is a strong visual medium because you can demonstrate skills in sequence, you can add printed captions, and you can tailor the sound track to match the language level of the person you are teaching. The other major advantage of having teaching materials on video is that they can be paused, rewound and replayed as many times as necessary for the person to get all of the information.

Emma is a bright and artistically talented young woman with limited verbal language skills. Over the years, we have developed many teaching techniques based on drawing and visual demonstration to help her to learn new skills in a variety of artistic media. One of the most effective ways to teach her is side-by-side demonstration of new techniques, using very simple repetitive verbal language (that she can later repeat to herself as she does the activity). Our most recent project is to translate this type of instruction to video, so that she can continue to learn more independently.

This is the first in a series of teaching videos, the "pilot episode" of "Emma's how to videos". Her mom has kindly agreed to share the video, to help out other ASD individuals who might learn in a similar way.

This video is designed to be used with or without the sound-track on. One of the most common issues in teaching ASD individuals is their irritation with too much language and noise - they become overwhelmed and overloaded and they shut down. Another choice is to turn off the sound-track of the video and add your own "voice-over" as you sit beside the student and watch the video together. Pause and rewind are your friends.

Here's the link:

How to Weave - an Emma "how to" video

We are very interested in hearing your feedback about this video, and about the new YouTube channel in general .... Stay tuned!

Sheila Bell

... we're launching a YouTube channel!

This blog is one part of the larger project "Autism and the Art of Communication" - a non-profit venture with the goal of freely sharing information and teaching techniques that parents and teachers might find useful in educating their ASD children and students. The project also includes a website: www.autismandtheartofcommunication.com , and a facebook page.

In response to some great suggestions from family (thanks Ter!) and friends (thanks Carole!), and with help from my friend Adam (who was very agreeable about being filmed), we have just expanded our project by adding a YouTube channel called  AUTISMartCOMMUNICATE .

And here is our first educational video (click on the link below):

Drawing as Communication - Scrambled Sentences

We are very interested in getting your feedback after you watch our initial attempt at producing a teaching video - your comments and criticisms will help us as we build our video resource library.

Sheila Bell, SLP

... love, love, love .....

Today is Valentine's Day and the topic, of course, is love.

drawn by Owen 2012

My youngest nephew is 4 years old ... a small person with large heart and great passion ... he recently asked me to marry him multiple times (to be fair, he also asked his mother and his brother to marry him, but I was honoured to be included in the select group). His love is bold and loud and unapologetic. I love that about him.

People on the autism spectrum also love in a big bold unapologetic way ... the expression of this love may be unorthodox, but the emotion is sincere and heart-felt. Because their emotions are often un-named, unprocessed and unexpressed, others can mistakenly assume that emotion is lacking. Nothing could be farther from the truth.

It is always interesting to me to see ASD individuals who have difficulty expressing their own emotions in everyday life (through words, facial expression, tone of voice) produce drawn stories showing clear emotional reaction and interaction between the characters. Here are some stories where love is the topic:

.... a romantic love story where a knight slays a dragon ...

by Adam 2001

... to win the hand of the fair princess in marriage ...

... or how about a story of the love between friends, sticking together through good times and bad? here's one of a series of stories about Mr. Bean and Teddy, drawn by my friend Kevin, where the two friends are swallowed by a whale ...

by Kevin 2012

... and don't forget the love and comfort that a "stuffy" toy provides in the middle of the night, even if you're a big fierce dragon ...

by Adam 2001

I will leave you with a final portrait of love ... the love between a son and his mom, drawn by my friend Adam when he was in elementary school:

by Adam 2001

.... I know her personally, and she actually is ...... Happy Valentines Day!!!

... of babies and monsters

What scares you? What do you love? Likes and dislikes are very personal things, and none more unique than those of people on the autism spectrum.

From the beginning, Adam loved monsters and skeletons and all things creepy ... Halloween was his "high holiday", and he learned to spell "skeleton" before he could spell "and" or "the". So we taught him everything from language arts to math and science using monsters and mayhem:

Sentence construction & comprehension - January 2000 - by Adam

Monsters were great! ... but babies? ... well, that was another story entirely. Adam found babies to be scary and unsettling - they would poke you in the eye, move your stuff, cry loudly - they were even more unpredictable in their actions than regular people (and that was saying something!).

Here is one of my all-time favourite stories drawn by Adam, answering the question "Which is more dangerous, a lion or a baby?"

I set up the situation by drawing the first square .... a baby encountering a sleeping lion:



... the baby takes action:

... the lion gets a rude awakening:



... look how scared the lion is, and how happy (and in control) the baby is:

... the baby has had his ride, and now he leaps off:

... love the theatrical flair as the baby casually lifts one leg and leans over towards the lion's tail:

... with one hand, that baby grabs the lion by the tail and swings it around his head:

... then sends the poor lion sailing off into the stratosphere:

.... babies are much more dangerous than lions!


And this is why I work in the field that I do ... I love the minds that see the world in such a different (but equally valid) way ... once you look through the eyes of autism, the world never looks quite so mundane and humdrum again.

And just in case you were wondering what might happen if a baby met an alligator .... here's one more picture for your education:

picture by Adam

... no contest!!!

Transformations and Everyday Magic

HAPPY NEW YEAR, and welcome back to the blog!!

Adam and the Magic Lamp - drawn by Adam (2001)

This is the season when our minds turn to changes and transformation. What would you wish for at the start of this new year if you found an old lamp and unearthed a genie?

Sometimes when life is difficult, we give up on wishing and hoping and dreaming. New Year's resolutions can seem like something meant for people who don't know how sharp a left turn life can take, people who have not yet experienced an event they can't budget or diet their way out of.

While you may not be able to use a "genie wish" to change the basic circumstances of your life, you can still try this bit of everyday transformative magic: choosing to change your perspective can change your daily reality. Sounds simple, but it's true.

Here's the challenge: How about taking a week and rather than thinking about the deficits and challenges your person with autism must deal with, instead focus your attention on the gifts and talents they also possess? 



And to illustrate my point, as always, a couple of stories (about transformations of the visual kind):

Here is a story that was drawn by Adam when he was 11 years old (just one of a series he drew involving magic and transformations):

The story shows humour and imagination, people interactions and emotional reactions. He was fascinated by plot lines where witches and wizards used magic to transform people into animals (his favourite movies were "The Emperor's New Groove", "Shrek" and "Aladdin"), and he loved to create his own fairy-tale story lines. None of this rich thinking was evident in his spoken or written work at the time - we had to move into the unconventional context of purely visual communication to connect with the true creative intellect that lay underneath the more obvious surface deficits of impaired verbal language.

Michael is another young man that I work with who has always been fascinated by visual transformations. Awkward social situations where he has removed hats and glasses from strangers in public places turned out to be his attempt to see what people looked like with and without the extra features (something we discovered as we drew out the problematic situations).

Animation turned out to be a perfect medium for him to explore this visual interest without the downside of negative social reactions. Here is a movie that he and I made together a few years ago - he drew the storyboard and I used Flash to animate it for him (click on the title under the picture to activate the link):

"Transformations" a movie by Michael

Again, you can see the humour and emotion in the short story sequence - an interesting glimpse into the thoughts running through his head.

This year we have been using Michael's high interest in visual changes to encourage him to start to learn how to use animation and movie software himself. Our focus is to transform those initially challenging social situations into real-world skills that he can use for enjoyment and maybe even eventually employment. 

And so, some food for thought as you start off 2012:  Life is ever a mixture: good and bad, easy and hard, happy and sad. But, whatever the circumstances, the transforming choice you always have is whether you focus your attention on the full or the empty part of the glass.

... so bottoms up! and savour the sweet part to the last drop.