Through the Eyes of Autism - Part 3

First of all, I want to thank my friend Brett for allowing this very personal story to be shared with all of you. The topic remains a sensitive one in his life, but after much thought he has decided that his experience may be useful to others, and I appreciate his courage in allowing this story to be told.

note: Brett has read & approved this post before publication

The topic today is swearing, or more accurately, what makes a swear word?

Let me start at the beginning:

In grade 6, Brett had a bad day in resource - he got very upset with the teacher, and she got very upset with him. We used drawing to help with the problem-solving and here's what happened from Brett's perspective:

 

He and the resource teacher had an angry disagreement about the format of some written school-work (the circled "50" refers to his anger level on his "angrymometer", a useful concept from Tony Attwood's work). The "a-word" that he's written in her speech bubble is a swear word.

Following the incident, Brett was still angry, but also shocked that he had heard his teacher using a swear word in class, and he said something to another student in resource about it. Eventually the discussion ended up in the school office, and they called home.


We were all pretty surprised that a teacher would swear in the classroom, and curious about exactly what words she had said. Brett was too upset to tell us the word (he said it was too bad to even write down) - he agreed to listen to me go through the list of most common swear words so he could let me know when he heard the one his teacher had used (even this was very hard for him, because he had a great anxiety about hearing the bad word again). I went through the list, and none of the words were "the one". At that point Brett became a bit impatient with me and said "no, not those, I don't mind those words ... it's the A-word and the D-word that are the really bad ones".

I give Brett great credit for persevering here, since the upsetting incident was very fresh in his mind, and his mom and I were just not understanding what words he was talking about. After more discussion, we ended up with this drawing (done by me, summarizing the details):

Again, apologies to Brett, since these words are still quite profane and upsetting for him (Brett: you know I wouldn't write them down if it wasn't necessary to help people understand what you're talking about):

The "A-word" is "acceptable" (and related words like "unacceptable") and the "D-word" is "disruptive" (and related words like "disrupting").

It was hard for Brett to believe that others didn't have the same reaction to these words that he did.


And why were these words worse than other words? Here's what Brett had to say:

What makes a swear word? Swear words from other languages don't sound bad to us, in fact they often sound funny. The words themselves are just a collection of sounds, with their literal meaning often relating to body parts, bodily functions and religion. So why do they elicit such an instant negative gut response in native speakers of that language?

... because they foretell negative events. Reliably. Brett had learned that once teachers started to use the A-word and the D-word, it was a safe bet that the situation was going to H-E-double hockey sticks.

Additional comments from Brett (today): Swearing is all about "context" - someone using bad words to express their own frustration, but not directing them at someone else is not swearing; but when the words are directed at another person, and are said in a tone that is condescending and degrading, that's swearing. When the teachers used the A-word and the D-word with me, they were lecturing me and it felt like they were talking down to me, telling me that I was wrong and that everything was my fault - it felt like fingers pointed toward me, poking and prodding me sharply like a spear. That's why those words were swear words.


And now we come to a very interesting part of the story - the reaction from the teachers once they learned this information about Brett's perspective from his drawing work:

They were great. They listened, they respected what he had to say, and they bent over backwards not to use those words in Brett's presence (and that was not easy - any teacher can tell you that those words come up frequently in daily classroom situations). They instituted a "card system" (like on a soccer field) where Brett could hold up a yellow card from his desk if a teacher accidentally used one of the words in his presence - this would alert the teacher, and they would later come by his desk and give him an "apology card". I was so impressed with the school's reaction on this issue. Everyone from the principal on down was informed and part of the program.


... but sometimes even the best system has a glitch ... in this case, it was a supply teacher who missed the information about the swear words ... and so here's what happened in class that day:

I drew the first picture, setting up the situation using information from school personnel and Brett. There was a disciplinary situation in class that involved other students (not Brett), but Brett was close by when the teacher used the "A-word" as he tried to sort out the problem situation. The second picture is drawn by Brett and shows his internal and external reaction to the teacher "swearing" in his presence. He is extremely upset that he had to hear the bad word, and his first reaction is to interrupt the teacher and let him know that he swore and he needs to apologize. The substitute had no idea what Brett was talking about and so he was impatient with him and wouldn't let him speak (leading Brett to decide the teacher was "like Hitler") - I filled in the thought bubbles of the teacher, to help Brett understand his perspective and where the impatience was coming from. The tongue out "raspberry" was Brett's next reaction to the teacher, and that action resulted in a trip to the school office (with Brett still very upset because the teacher had not apologized for swearing). The third picture in the series was drawn by me to illustrate to Brett that the substitute teacher had no idea that he had used a "swear word".


So Brett went to the office and explained himself quite clearly to the principal:

The principal immediately figured out what had gone wrong (that the substitute didn't know about the swear words program) and was quite understanding of Brett's reaction.


We made a plan for the next time a situation like this came up:

The plan involved Brett waiting for the teacher to finish handling the situation with the other students, then explaining that the A-word or D-word was profane to him and that he was upset to hear the teacher say the word, and hopefully the result would be an apology from the teacher.


The card program was in place for several years and two schools. Brett's high school administration was terrific about letting us talk to staff at the beginning of each school year to help them understand his perspective on this and other issues. But it was Brett's ability to so clearly express his emotional reactions in his drawing that was key in helping teachers to truly understand his point of view.


Brett, you're an amazing guy and a great advocate, not only for yourself, but for many other people with Asperger's and Autism. It's my privilege to know you and share in your life. Never lose that wonderful dark sarcastic humour.

Your friend, Sheila

From Wii to the "Real World" - how video games can open the door to new experiences

Video games can be more than just entertainment - safe and "controllable" experiences in the electronic world can build knowledge and confidence that allows individuals with autism to willingly try new activities in the "real world".

Today I'm giving over the blog to a "guest blogger": Casey, Adam's dad. Last week he e-mailed me a great story about Adam's first experience with the game of golf, which he has kindly agreed to share "with the group".

Adam & his dad, Casey (photo by Beth Walsh, Adam's mom)

And now from Casey:

Adam has recently started playing the golf game on the Wii, so after Beth went to work today Adam and decided to head out to the golf range to swat a few balls.

I showed him the picture, ran through some videos of guys swinging clubs (heaven forbid that he modeled my swing). We first went to the practice putting greens and tackled the first big decision: is he a lefty or a righty? He’s right handed (draws and prints with his right as you know), so we tried both sides and the right side seemed more natural (although unlike his dad he does not seemed to be profoundly right side oriented). He quickly mastered that, was at least 3 putting and more usually 2 putting most of the greens.

Then we switched to the big test. I started with the middle irons, which I think are the easiest to hit. Pretty ugly at first, the pro wandered out, asked if I minded if he gave some tips (clearly and easily discerning that I am a golfing moron). Didn’t flinch when he saw that Adam had some communications issues (I just said just speak slowly, clearly and use common words and he’ll be fine) which he did, and he was. Within 10 minutes Adam was getting under the ball. Not very far mind you, but pretty good up and down motion and more or less straight. The pro was excellent, very patient and gentle with Adam, just focused on one thing at a time, demonstrated with his own body with just the right amount of words. Adam loved it. We stuck with the irons for about 45 minutes and then switched to a driver, in this case a small fairway driver. Small head, easy to swing and less likely to get weird movement on the ball (although somehow I manage to do just that). Adam is still very stiff and does not have a natural swing (unlike his Mother who does) but you could see him improving by the minute. Not as successful with the driver, but he did OK. When offered the choice of McD or more golfing, he said more golfing. We finished off with a few more minutes on his irons and then back to the putting greens. 2 ½ hours total, I tried to pay the pro for his time (he spent easily an hour with us, waved it off … I have a nephew just like Adam, least I could do) and in the end all it cost me was a bucket of balls … and of course 2 hamburgers, no pickles no onions, medium fry and an ice cream cone.

...  As we were leaving the pro came over and complimented me on Adam, said that he was very sweet guy, listened well, tried hard, didn’t get upset when things went wrong. If all his students were like him he would have a lot more hair (he was effectively bald), we laughed and shook hands.

A fantastic evening, a dad and his son plunking a few balls around in the setting sun …

Thanks for sharing that Casey!

Adults with autism need to keep learning, so that their lives (and the lives of their families) remain interesting and fulfilling.  Electronic games are an unorthodox type of educational tool that is definitely useful for opening up new areas of learning and experience, and expanding the everyday worlds of ASD individuals.  

Draw Something! ... using a popular interactive iPad game to teach drawing for communication

I'm a big believer in changing up intervention programs over the summer months and giving everybody (kids and parents and professionals) a break from the school year schedule. This year, Adam and I are exploring the communication possibilities of some iPad games that are social and interactive in nature. I have found, over the years, that some of the best voluntary focused learning happens in games and "fun" interactions (to quote Mary Poppins: "just a spoonful of sugar helps the medicine go down!").

"Draw Something" is a great iPad and iPhone app that is essentially a "barrier" game (common therapy structure for communication learning) - I can't see what you have in front of you, and you need to use some form of communication to transmit the idea or concept to me. It's like the board game "Pictionary" in that you have a word that you need to illustrate for the other person to guess. Guessing is supported by having a "closed set" of letters to choose from, as well as blanks that indicate how many letters are in the "mystery word".

Here's an example of a word clue I drew for Adam:

visual clue drawn by me (Sheila B) for Adam

The receptive side of this game (for the person who is the "guesser") works on language skills like word retrieval, word meaning and spelling. If a clue is hard to guess, you can use the "bombs" (lower right) to take away some of the letters that are not in the puzzle (caution! once you run out of these, you have to wait to have enough coins to buy more, so we've learned to use them sparingly). There's also a spot for the person drawing to add comments (which appear after the word is guessed), and I use this to give extra language "context" for the word in the puzzle:

On the expressive side (for the person who is drawing the clue), the game reveals vocabulary knowledge (what do you think the word means?), letting therapists and educators know what gaps to teach to. It also directly practices drawing to communicate - can you draw the meaning of the word clearly enough that another person (at a distance) can understand?

Adam is a natural at this game, and it's provided an interesting way to discover what vocabulary and word information he has learned over the past while. Even though we've known each other for years, I still find myself amazed at the breadth and depth of knowledge revealed through a task like this - often he's just waiting for us to ask the right question in the right way.

His line drawings are full of information and are very clear depictions of the word meanings (and this is not easy to do - when I play this game with my husband, a very smart scientist, I often have to resort to totally random guessing because his drawn clues are ... hmmm, how to put it politely? ... not clear).

Here are some of Adam's drawing clues that he sent to me:

drawn by Adam

drawn by Adam

drawn by Adam

drawn by Adam

drawn by Adam

When you are the person drawing, you have a choice of three words to illustrate. Initially, Adam chose mostly "1 coin" (easier) words, but as he gained confidence, he's tried out some 2 & 3 coin words as well (these words tend to be more conceptual and/or more complex to illustrate).

Here's an example of a clue I drew for Adam for a word that was a non-action verb:

drawn by me

And here's a clue that Adam drew for me for a word that was a concept, using the same idea of drawing a context, then putting in dashes to represent where the word fits:

drawn by Adam

We've also been using this game to highlight special topic vocabulary. For example, since it's the Olympics right now, I chose some "sporting" words on my turns. Here's one that I drew for Adam to guess:

drawn by me

Then Adam chose to give me a sports word on the next turn:

drawn by Adam

This type of drawing exercise helps to build language related to current events in a person's life.

I could easily add in several more pages of drawings, but I'll make myself stop (did I mention that a side benefit for therapist or parent is their own great enjoyment and entertainment? you will treasure the pictures you receive and you will find your own neuroplasticity increasing as you challenge yourself to communicate without verbal language). Well, maybe just a couple more to make my last point (for now) ....

You can use your drawing turns to demonstrate some generally understood visual devices that convey meaning. For example, an arrow indicating which part of your picture illustrates the specific word you are drawing. Here's one of my examples for Adam, drawing the word "voice":

drawn by me

And this is the one that Adam drew for me. Can you guess the puzzle?

drawn by Adam

Have fun, and give the game a try!

** free version is good for a trial, but if you're going to play more frequently, I would suggest purchasing the full app (less than $5, no advertising, be warned that in-app purchases are possible) **



Through the Eyes of Autism - part 2

Autism is an invisible disability. Because of that, people with autism are not always understood when they go out into the larger world. I have met too many ASD people over the course of my career who develop the assumption that anything that goes wrong at any given moment in any place with any crowd of people is most likely their fault. And others are happy to back them up on this.

Parents like Brenda ("Mama be Good" blog author) worry about how their children will react to this prejudice when they are old enough to recognize it (see her recent string of posts on their family trip to Disney: Autism, Disney and Accommodation , Autism, Disney and the Bigger Problem  , Letter to Disney: Autism is a Disability).


So, I'd like to share with you some of Adam's thoughts and reactions on the topic of "disability", and I'll start with an incident from his high school years:

A blind student enrolled at the school, and every time Adam met her in the hallway, he was quite upset. We did the following visual work to help him make a "plan" for what to do when he met the girl in the hallway. I drew the first picture, setting up the situation, and using a circle with a diagonal slash through it (a symbol that Adam understood) over the girl's eyes to explain to Adam that her eyes didn't work. Pictures 2, 3 and 4 were drawn by Adam:

We ended up with a solution for the hallway distress, but the more interesting thing that came out during this drawing session is best illustrated by the third picture:

Take a look at the expression on Adam's face. He is taken aback and slightly frightened by the fact that the girl's eyes don't work. This, to him, was the scariest part of this situation, the reason that he became so distressed when he met her in the hallway - as a person who depends on his visual sense to understand and communicate with the world, to negotiate even the smallest of daily events, he couldn't imagine a worse disability than not being able to see. It had never occurred to him that someone could be without that information channel, and the thought of it was unnerving. What the girl represented was scary. And that was the core of his reaction to her and her disability.


What about Adam's reaction to his own "disability"?

Well, interestingly, I'm pretty sure he doesn't view himself as disabled in any way. He knows that the world and other people can be difficult, but he generally thinks that any fault in the situation lies outside of himself. Here's just a couple of examples from his life that show his attitude:

... from the earliest days of our work together, I would try every possible method and mode to connect and explain/teach any given concept to Adam. When we would finally hit on the "key" explanation and the light bulb would go on over Adam's head, the most accurate words to describe Adam's reaction to my efforts were not "it's so hard for me to understand things" but "could you not have just done that first?" (I'm sure he wondered many times why his parents couldn't afford better help).

... when others would talk down to him (like he was a small child or not smart), I would feel outraged. But Adam's reaction was interesting (and more mature than mine). He would look puzzled, begin to really observe the person who was talking "baby talk", then he would kindly and gently indulge that person (I once watched him pat a teacher on the head who was talking to him as if he were 2 years old). He wouldn't conclude that they were underestimating his intellect, instead he would assume that they were not very smart themselves, so he would politely accommodate their obvious intellectual disability.


So what has been his insulation from seeing himself as "disabled" or "lesser than"?

From a very early age, Adam's parents have treated him with the greatest respect. When he was younger and totally non-verbal, they assumed he was smart and did their best to figure out his perspective and his wishes. Any success in my therapy with Adam has been possible because of this family attitude. We have all worked together to help Adam make sense of the world, to build his communication and academic knowledge, to modify his environment to allow him to cope, and to shield him from the negativity and ignorance which can exist in the larger world.

When you grow up knowing that you're smart, that you're okay, that the people closest to you believe in you, it's much easier to accurately assign blame for prejudice and nastiness. It's not you, it's them.


We all need to continue to work together to advocate for people with disabilities, but at the same time realize that you already have the power to protect your child - your respect will be the key to helping them build a positive self-image strong enough to protect them from ignorance.

Put me in coach!!

My husband spent years coaching our boys (and many other neighbourhood kids) on the baseball diamond:

John let everybody play - took the kids that no other teams would take and showed them how to play ball and love the game. He was a model of what coaches should be: teaching, encouraging, calm and unflappable, endlessly optimistic. Some seasons we lost a lot of games, but the kids always felt like winners ("Coach, did you see my hit?" "Coach, I only pitched one over the backstop!"). And many of those kids went on to enthusiastically and successfully play baseball for years and years, in large part because John gave them a chance and taught them how to play (they still greet him as "coach" when they run into him at the grocery store).

My friend Kevin has recently joined a special baseball league, and is discovering the joy of the game as a young adult. Here are some pictures he drew of himself (and Mr. Bean and Teddy, of course!) at the ball diamond:

Teddy & Mr Bean ready to play ... drawn by Kevin 2012

Mr. Bean hitting the ball .... drawn by Kevin 2012

Kevin catching the ball .... drawn by Kevin 2012





And here's a "big picture" that Kevin and I drew together as part of our last language therapy session (teaching baseball vocabulary and concepts, so he'll have a better understanding of the patterns of the game):

 "Baseball Game" ... drawn by Kevin & Sheila (2012)

Learning how to play baseball and be part of a team sport is a happy thing for Kevin. He gets to meet new people and learn new skills in a very positive atmosphere. He looks forward to it every week. Win, win, win.

I love the leagues that share the joy of sports and games with all kids, not just those who look like they're headed for the mythical "Big Leagues". And I love the coaches who see the potential in all kids, who give them a chance and patiently teach them how to play.

So, on this Father's Day weekend, I'd like to propose a toast to all the parent coaches:

"Here's to your warm-hearted dedication to making the lives of kids a little bigger and a little brighter, one pitch, hit and catch at a time!!"

(and thanks for bringing the water bottles and the popsicles!)

Through the Eyes of Autism - part 1

This post is the first in a series inspired by a recent blog post written by "Mama Be Good" ( The Autism System: Not Good Enough ). 

In her post, the author (mom of a son with autism) talks about the unintentional messages we can give to our children, students and loved ones who have autism when our goal is "fixing" them. Without meaning to, we focus on the negatives - the "can't do's", the difficult behaviour and struggles with learning and interaction - to the point that we see a "to do" list rather than a person. We accidentally treat them as "less than", and this is a message they absorb.

Drawing for communication has allowed the people I work with to share their inner perceptions and perspectives on the situations they meet in their daily lives. Today I would like to invite you into a world that I have been privileged to see by sharing some drawings with you:

Brett is verbal (AS) but has difficulty discussing emotionally loaded topics. He never liked gym class, especially in the spring and fall when there were outdoor activities. To find out what was behind the distress, we discussed the situation through drawing.

note: I am sharing this very personal glimpse into Brett's mind with his permission (he thinks it might be helpful to you)

I drew out the initial class situation where the gym teacher is asking them to run laps around the outdoor track (Brett is the guy with the dark cloud over his head):

2006 - "the setup" by Sheila B

Then I handed the pen to Brett, and he drew out the next series of pictures:

2006 - by Brett

He had always referred to this gym activity as the "death run", and now we knew why. From his perspective, 5 laps in the hot sun was a trip around the world ... past the Eiffel Tower, through Russia and past the Taj Mahal, across the desert and past the Pyramids, across the ocean ... only to end up half-dead as "last runner in" with the gym teacher "tsk tsking". The sun was too hot, the run too long, the bugs (featured in other drawings of outdoor gym class) too annoying.

--- and may I just say here that my friend Brett's "dark humour" is his trademark, cutting and hilarious, constantly and effectively illustrating his frustration with the inflexibility and absurd assumptions of the NT world - I love it ---

He also drew out two "wishful thinking" alternatives to the "death run". 

One which I think he actually tried (a quick exit from class):

2006 - by Brett

and one which he only entertained in his "thought bubble" (running mini-laps):

2006 - by Brett

Hilarious.

And educational. Once we knew Brett's perspective on the situation, it was possible to give him help and support that worked for him. I have to say that the teachers at Brett's schools were really good with him - respectful of the information that he put out through his drawings, and willing to accommodate because they could "see" where he was coming from.

Drawing for communication is an effective method to help the "helpers" understand how the person with ASD sees the situation - what do they want? what do they need? what's giving them trouble? - valid and important perspectives that provide the information we really need to help a person with ASD integrate and deal with the world to the extent that they need and want to.

Respect, love, humour and understanding .... that would be my prescription.

A day to spoil your moms!

In honour of Mother's Day tomorrow ... 

I would like to share with you one of my all-time favourite "mom" portraits, drawn by Adam when he was 10 years old, and just beginning to express himself through his drawings: 

drawn by Adam (2000)

Adam loves his mom. At the time he created this picture, Halloween monsters and creatures were his passion. He draws "mommy" as a "mummy", the highest compliment, and the facial expressions suggest that he and his mom are set for risky (but fun) adventures at a moment's notice.

When Adam was small, his mom was not only the center of his world, but the only salient part - the lone voice he recognized and responded to, the single person he actually "knew". As he's grown, his world has expanded to include other people, but she is still the constant (and I would guess still the favourite ... sorry Case!).

So to all the extraordinary moms of kids with autism - the ones who listen, help, teach, defend, comfort, love, etc, etc, on a daily basis - I'd just like to say, from one mom to another:

HAPPY MOTHER'S DAY!!!! 

... and I hope you get (edible) breakfast in bed!