R-E-S-P-E-C-T

"One of the most sincere forms of respect is actually listening to what another has to say" ~ Bryant H. McGill

We're reaching the end of another April, with lots of public discussion about autism. One message that has been coming out loud and clear in recent years is that many people on the autism spectrum are not feeling respected, or "heard" in this discussion ... that has to change.

Most of the people talking about autism are well-intentioned - we want to help people or a particular person on the spectrum to be successful, to have an easier life, to have a good future. The intentions are not the problem, but where we go from there can be (we all know what the road to H-E-double hockey sticks is paved with). Too many times, we (as therapists, educators and parents) charge ahead with ideas and programs and interventions that WE think are best, that WE think should happen, that WE think others should comply with. We don't ask, we tell.

Social mis-step in the high school hallway - drawn by Adam

The picture above was drawn by Adam in high school. It was part of untangling a larger social problem he was having in the school hallways as he would take the shortest route from point A to point B, accidentally walking between people who were having conversations. The interesting part of this picture (to me) is the facial expressions - Adam aware that he had once again violated some unwritten unspoken social rule, causing other people to be upset with him, but no idea exactly what had gone wrong or how he could fix it (a common experience for people on the autism spectrum - neurotypical humans are ridiculously intolerant of social mis-steps).

A few questions for you: Why is Adam wrong? He has no bad intent, he's just trying to get to his next class. Why is the chattering social majority in the right? Shouldn't they actually be getting to class too?

True solutions to the mis-match between widely held social customs and one individual's unusual approach come through communication. Not communication as in telling the individual how wrong they are to do things the way they do, but communication that starts with listening to the individual to find out what things looked like from their perspective, what their thought process and intent was, what was okay, what was upsetting. Followed by discussion to fill in useful information that may not have been received by the individual. And only after that whole process of information exchange, and clarification of the situation, figuring out a solution that takes into account all sides, all perspectives, with the person on the autism spectrum as an active and powerful participant.

Communication is power, but only if other people listen to and respect that communication. We need to start listening better:

click the link below if the video doesn't automatically play:

Autism: Are you listening to & respecting the communication?

Long-term success in autism ... How will you feed the joy?

Today on the blog we welcome a "guest blogger": Carole, mom of Kevin (whose art work has been featured in previous blog posts). Kevin is a young adult on the autism spectrum with limited verbal language who uses drawing for communication.

Kevin playing the drums

Those of you who have been following our blog for a while may remember reading a bit about Kevin's early days in a post called A glimpse back at where one boy's drawing for communication started - the post included links to video clips of young Kevin and older Kevin, giving an idea of how far he has come. I recommend that you take a look at those clips before you read what his mom has to say:

How Will You Feed the Joy? by Carole G

(originally published in the Fall 2013 Access Integration newsletter of CISS Ottawa)

I’m sure there is not a parent among us raising a child with special needs, who does not have forever imprinted on their minds and in their hearts, the day their child was diagnosed. For our little family, it was the virtual blow from a two by four to the gut; the breathless shock to the system; the blood rushing to your face and the feeling that you needed to sink to your knees as some faceless voice uttered “severely autistic”. It’s amazing what power a few little words, quietly spoken, can have on a whole bunch of lives. Then comes the ricochet effect as the power of love for your child sends you hurtling into action as if on a permanent adrenaline rush: therapy, preschool, social programs, interventions, doctors, what program, how many hours, what can we afford, who are the best service providers and how much can we fit into a day? All the while, like an irritating song stuck in your head, the words so many will utter without truly understanding the impact they will have; “there’s a window of opportunity, and then development slows or stops.”

Hindsight is a wonderful thing. It occurs once we’ve made our mistakes, and we’ve experienced the learning curve. So I thought I’d share a couple of the things I see so clearly now, as we progress on our journey with Kevin who is now a young man of 20.

Yes, therapy is tantamount to success! Thank heavens, no matter how we bemoan the waiting lists, the cost, and what we feel is a lack of service, there is so much more available today than when we entered the system. Information and support is now out there in abundance, a few keystrokes away to any home that owns a computer. But what is success? We took our little boy on a marathon journey of learning. We enrolled him in Thursday’s Child Nursery School. We took parenting courses in behaviour modification. We used Children at Risk, which at the time provided supervision of behavioural programming and I worked with my son, as did a couple of special needs workers. The little boy who screamed and whined constantly in frustration, tantrumed continually, hit and kicked and couldn’t bare to be touched, was stubborn and defiant and who lived in a world that completely separated him from us, made gradual and very slow changes. Then we decided to take him to a doctor who practiced fundamental medicine, to look at his eating and digestive issues and low weight. While we waited for our first appointment he sent us a questionnaire. The first question was, “what are you hoping to achieve?” Such a simple question, but for me it opened the flood gates that culminated in a philosophy for our home, our child and our family.

What I wanted was for my son to experience calm, to reduce his pain, to calm his overactive senses, to be able to exist in his own skin and to have a quality of life and experience joy. By extension I wanted this for every member of the family and I wanted Autism to be a part of our lives and not the driving force. Yes, I wanted to teach my son and continually raise the bar so that he moved towards his potential. Yes, I wanted to feed his mind, and treat him like any other child, with some added supports to accommodate the autistic characteristics, but what I really wanted was to feed his soul. I felt that any child with as many hurdles to jump just to make it through the day and who was being forced to live in a world that really suits us and not him, should absolutely be given a reason to love life.

So, I watched him like a hawk trying to discover what fueled his interest. It really wasn’t hard to figure out that music calmed him. As he rocked to the beat, his body seemed to ease and he beamed in absolute delight. I looked for something to engage Kevin and sought to find things that would also provide entertainment for Raymond, his older brother. It is rarely discussed, but when you add a disability to a family unit, your plan of action has to include every member, and take into consideration how they relate to each other. Raymond chose drumming. Kevin, who couldn’t abide certain noises, who had to be taught to touch his nose with the aid of a mirror, who didn’t cross the midline to pick up a pen with a preferred hand for an eternity and who was clumsy and uncoordinated was about to embark on drum lessons. I found a local music school (www.jeffsdrumacademy.com) and sat with the two of them for an hour a week. Fate, kismet, a guardian angel, call it whatever fits your beliefs but we were matched with a wonderful young man who was patient, fun, not only didn’t mind Kevin’s rote scripting of movies, but joined in. He willingly turned to me and asked for teaching suggestions. He accommodated the diagnosis, and expected Kevin to learn like any other student. The boys loved it.

Kevin has been playing drums for over a decade. He now has barely any noise sensitivities and he’s able to count out music at incredible speed. He is well coordinated while playing and continually improves. He reads music at a university level and most importantly he loves it. He looks forward to his lesson, is thrilled to see his teacher and has a face bathed in bliss as he plays along to the music, confident and proud. The brothers share a common enjoyment and this feeds their mutual love of music. One of the best gifts Kevin ever received was a website made by his brother. It contains all the music videos Kevin loves and the commercials that send him into fits of laughter. I’m sure Raymond thought he was just creating a gift that his brother would enjoy. I saw it as an example of a brother’s love. He took the time to create something that was perfectly suited for a differently abled sibling and one that fed into the interests they shared and a place they connected.

In a similar fashion, we have long used the services of the most incredible, out of the box thinking speech therapist. This wonderful lady forged an amazing bond with both Kevin and our family. She taught Kevin to draw and paired that skill with language (www.autismandtheartofcommunication.com).

Once Kevin began to draw he didn’t stop. When he picks up a pen, his face relaxes, he becomes spellbound and competent. His art is his love and is pervasive in his life, almost like a visual dictionary that he uses to order, understand, and relay his life. I am very grateful for a way to communicate with my son and him to me. When a situation arises that I need to explain or prepare him for, I pick up a pen and draw a comic strip. When I need to understand him, I will draw a picture and ask him to finish it. He shows me in pictures what any other child would describe in a conversation.

Kevin ticked all the boxes on the Autism diagnosis criteria save one, he didn’t spin objects. He was loved and challenging, big time. It has been a long, gradual journey. Kevin could not speak, tolerate sounds, touch, textures and taste.  He was distant and isolated, screamed and hit and lived in constant frustration. He was in pain often, slept rarely and appeared to be on the edge of a cliff always.

Today Kevin is barely verbal but communicates with us. He is calm, joyful, affectionate and can tolerate anything with a little preparation. He is smart, eager to learn, helpful, and does anything and goes anywhere you would expect of a young man his age. We taught him, fed his mind, helped find and develop his loves to create his joy.

What is success? It is ongoing and our journey continues. We still have a long way to go, but success hit me like that initial two by four at diagnosis, albeit with a much different effect, when our family attended Raymond’s university graduation. Success was never thinking for a minute that Kevin wouldn’t be there to share that joy. It was also watching Kevin, gently rocking with a smile pasted on his face as he listened to the quartet play as we waited for the service. He sat quietly through a long, hot service, getting up and cheering beside us as Raymond walked the stage. Raymond caught sight of us and sent a special wave specifically for the brother he is connected to. We were a family sharing a day of pride and meaning, where Autism was present but not the driving force.

So as you embark on a journey that will push you to your limits, my suggestion is, as you race to do all the things you can for your child, take a moment to relax and consider; how will you feed the joy?

 

Untangling the "Why?"

Probably the most common questions I've fielded over my years working with individuals on the autism spectrum all start with the same word: "Why ... ?"

Why is he doing that?
Why doesn't he look at me?
Why did she run away?
Why did he melt down?

Some autism professionals will tell you that all of the information you need to know (to answer your question) can be found by observing the person's behaviour in the environment where it occurs. I would agree that this can be a good place to start (especially if the person is non-verbal) because you get some clues about what might have gone wrong, what might have irritated, upset or overwhelmed that person. But it's just a starting point.

Many human actions and reactions are more complex than "if this, then that" - they are driven by thoughts, feelings, perception, understanding - to figure them out, you will need to find a way to ask the ASD person what the situation looked like from their perspective and you will also need to listen to, respect and act on the answer you get.

So, a few personal stories to illustrate:

First, a story that I've mentioned previously in this blog. When Adam was in elementary school, a social goal was written into his IEP (Individual Education Plan) stating that he would learn to say "hi" to other students in the hallway. From the start, Adam was clearly (and observably) upset by this program. So, I drew a picture to "ask" him what was wrong - here's what he drew:



#1 is my picture "question" to Adam - pictures #2-4 are his "answer"

Picture #3 was the most compelling for me - Adam is inside the locker, hiding from the horrible smiling greeting girl (visible in pieces through the locker vents), his distress and upset clear for anyone to see (no lack of emotion on his part). While we still didn't know "why" it was so awful for him, there was no doubt that it was, so the "greeting program" was scrapped.

Respect for his perspective. In retrospect, my guess is that he was not able to process faces and voices very well at that point in time, so he couldn't really tell who was talking to him (or why they would be). When he got to high school, he seemed to suddenly be more comfortable with other people and started to spontaneously greet them and call them by name - because they were the same height as him? because his neurology had developed to the point the he could distinguish one person's face/voice from another? because life in general was more comprehensible to him? - maybe one or all of these reasons (or something else entirely). Interesting, but not as important as listening to him and respecting the fact that a program meant to be helpful was actually not.

Second story, also from elementary school, involves a different young boy with a diagnosis of Asperger's Syndrome. We had been doing a lot of visual work to help him figure out social dynamics on the playground (an environment that was full of conflict and distress for him). Suddenly, his EA (Educational Assistant) made a worrisome observation - the boy's eyes were rolling up in his head when he was out on the playground with his peers. Some of you may have jumped to the same conclusion that we did - fearing he was starting to have seizures, we discussed a referral to the pediatric neurologist. But just before we did that paperwork, I realized we hadn't really asked him what those incidents were like from his perspective.

So, I drew him a visual "question" (although this boy was verbal, his language often failed him when he was trying to discuss more abstract or emotional topics). The question looked something like this:

I asked him to fill in the thought bubble, and this is what he wrote: "I don't want them to read my mind". Interesting. We had been having a lot of discussions about the "invisible" social cues (facial expression, tone of voice, body language) and about how eye contact was important because it let you "read" these social cues and make guesses about what another person was thinking (to help navigate a social situation more successfully). This boy was very intelligent. He decided he wasn't all that comfortable with having other people know what he was thinking, so he purposely denied them eye contact to prevent them from reading his mind. A logical and reasonable conclusion based on the information he had been given.

So, we had a new discussion about the difference between guessing and knowing, and the fact that the other kids couldn't actually read his mind. Once he felt reassured that his thoughts were still private and it was his choice which ones he wanted to make public, the eye rolling stopped immediately, and the neurology referral was no longer necessary.

Not a "why" that could be figured out in any other way than by asking the person doing the behaviour.

Third and last story. This one is about another beautiful and sensitive young boy with a diagnosis of autism, preschool age, who suddenly seemed to go backward in his toilet training. It turned out that he was fearful of the noise made by the public bathroom hand-dryers and his fear quickly extended to all toilets. A psychologist suggested to the mom that she make the boy go into the public bathroom (drag him, I guess), stand him under the dryer and repeatedly turn it on until his "avoidance" response was extinguished. The mom didn't think this sounded like a good idea, so she asked me for a second opinion. I strongly backed up her intuition that this was a very bad idea.

Observation showed that the boy was terrified by the hand dryer noise, although he couldn't articulate "why". Parental common sense says that you protect your child from fearful situations, rather than purposely exposing them to scary and overwhelming situations (because that's abusive).

Here's what we did instead. I made him a tape of sounds - ones he liked (like my piano) and ones he didn't (like the hair dryer). Then I let him be the boss of the tape machine (this was a while ago, it was a cassette tape). He controlled the on/off, the volume, which ones we played and which ones we didn't. Very interesting because he would choose to listen to the "fearful" sounds in this context, very softly to be sure, but he seemed to want to figure them out.

At the same time, we got him some "over the ear" noise protection headphones from the hardware store, and he wore these many places outside of his house to control his personal noise intake. I can still clearly picture the day he arrived at my house with a determined look on his face, headphones in hand and announced: "Sheila, get the broom ... we're setting off the fire alarm!" ... and we did ... and then he asked me to get the hairdryer so he could turn it on and off while cautiously lifting up one cup of his headphones. A very brave boy, facing his fears on his terms.

What was important here? Listening to his perspective. Giving him respect for the magnitude of his fearful response to certain sounds. Giving him control over that scary part of his everyday environment. Giving him strategies to manage the overwhelming cacophony of the larger world.

And here's the most interesting part. The "why" of his reaction, which was revealed as he grew older. This boy is a musical genius. His auditory system is so fine-tuned that he can play back multi-part harmony after hearing a musical piece only once. His auditory processing is far too exquisite for the yammering jack-hammer nature of our mundane world, and that's why he was overwhelmed by everyday noises when he was a little boy. As a grown-up, he is an accomplished musician with a rare talent. Beautiful boy indeed.

WHY is the most common question, and also the most important question.

 

Always seek out the perspective of the person on the autism spectrum. Respect the answer that you get, even if it's not convenient or the answer you hoped for. Bend the world to accommodate the ASD person, smooth the rough edges, make things comprehensible, give them control and the power to choose what they want and don't want, what they will or won't do. Respect them as independent intelligent human beings who may not want to comply with your arbitrary demands, but so what?

 

Defiance tends to lead to more interesting and unusual places than compliance anyway.

Michael's Father's Day Gift

Here's a story that Michael's mom sent me via e-mail yesterday. Michael wrote it for his dad, and with the family's kind permission, I am sharing the story with all of you:

First, an introduction by Michael's mom:

"Soon, he will have enough stories for a book. About six months ago Michael threw out an important wire and (his dad) was very upset, but there's been no talk of it since. How thoughtful of Michael to want to replace that wire ;-)"

And now, Michael's Father's Day e-mail to his dad:

"Dear, Dad,

I made a note for you for Father's day. I hope you like this.

Love your favorite son, Michael

It was Father's Day on Sunday, & Michael wanted something really special for his father. "Hmmm," said Michael. "I wonder what should I give my dad?" He decided if he wants a new wire for dad's radio. He looked at The Canada Computers Store for help. He looked & looked & looked & looked but the wire wasn't there. "Aw, tarter sauce!" cried Michael. "The wire is gone!" He went inside Future Shop & he finally found the wire in the wire box. He paid for it & puts it in his pocket & took it home. "I like my new present," said his father. "Awww, it was nothing," said Michael. "I promise never to throw the wire away again." His father doesn't really like the pink wire. He likes the black wire."

And a final comment from Michael's mom:

"In this story, we realized that the reason Michael threw out the wire was because it was pink.

Love how these stories give us insight into why Michael does what he does."

A beautiful illustration of the importance of opening alternate communication channels in autism, so that ASD individuals can express the reasoning behind the actions that can sometimes get them into trouble ... and there's always a reason.


- Posted using BlogPress from my iPad

Through the Eyes of Autism - part 4

 

How many little kids are "too many little kids"? What follows is a story of autism and spring-time, love, respect, understanding, and family ties.

 

 

 

 

To understand the events of this story, you first need to know that spring is a very difficult time for Adam. He has allergies to multiple substances that appear as soon as the snow starts to melt. He suffers traditional allergic reactions (sniffling, sneezing, congestion), but also experiences multiple sensory and cognitive changes in the spring-time months. His sensory hyper-sensitivities increase, his ability to process language and new information drops, and his tolerance for dealing with the challenges of everyday life out in the world is sharply reduced.

 

For more background details, take a look at this previous blog post:

Seasonal Allergies and Autism - April 2011

Here's the story: 

A couple of weeks ago, in the middle of the spring-time melt in Ottawa, Adam's sister Laura and her boyfriend Ryan took Adam out for a "fun" afternoon. Adam loves McDonald's, and on previous outings, starting off with lunch at McD's had worked out really well .... but not that day.

I have written previously about Adam's views on "babies" - a category that includes "little kids" (see blog post: ... of babies and monsters for more details). They are too short, too loud, too active and too unpredictable for Adam to feel comfortable and safe when they're around.

They get to McDonald's ... the moment Adam entered with his sister and her boyfriend, they all realized there was a problem. The restaurant was full of little kids. They were loud, they were active, they were everywhere. Laura and Ryan did what they could - helped Adam find a table that was less chaotic, tag-teamed at the counter to order the food - and Adam did what he could, distracting himself with his iPad. They managed McDonald's, but it cost all of them energy and sanity.

Adam entered the book store (next on the "fun" afternoon agenda) with few reserves left. What had been envisioned as a long relaxed browse through one of Adam's favourite stores instead became a "dash, grab, buy & leave" mission. Laura and Ryan understood this and were totally prepared to go with Adam's altered agenda.

And then they got to the cash ...

Problem ...

 

 

Laura had forgotten her wallet, and Ryan didn't have any cash either .... Adam was on the ropes, but he held it together.

 

Thinking quickly, Ryan suggested that he could go next door to Walmart and get some cash with his bank card:

 

 

 

When Ryan and Laura were relating this story (post-trip) to Adam's parents, they described their state of high panic in these moments, knowing that Adam was feeling stressed and very close to the edge of what he could manage - they had tried to present a calm exterior, and were hopeful they had not broadcast their distress to Adam. But look at Adam's drawings, the facial expressions, the hand-waving .... he knew their emotional state, he absorbed it, dealt with it and later drew it quite accurately ....

 

Fortunately, the story has a happy ending:

 

 

Ryan was able to get some cash (and chips) at Walmart. Laura and Adam waited in the car (the chips and iPad helped Adam to stay calm) while Ryan ran back to the book store, paid for the items Adam had picked out and brought them to the car. Then they drove home and all separately collapsed.

 

Whew! Triple whew! (one for each of them)

I said at the beginning that this was a story of love, respect, understanding and family ties.

From the earliest days, when Adam was a small, non-verbal, incredibly complex, medically fragile boy, his family has always treated him with respect - seeing him as intelligent with his own view-point and perspective, following at times the faintest of clues to figure out what he needed and wanted, paying attention to his reactions to decide what was tolerable and what was not, giving him choices and power over the direction of his own life, apologizing if they accidentally took him over the edge. As a result, Adam has developed a cool confidence - confidence that he will be heard, that "his people" won't intentionally ask him to do things that are beyond his ability or desire to manage, and that they will understand and help him out when the world coughs up situations that are not reasonable.

Great story, great kid, great family.

Love (and true liking), respect and understanding are the best gifts that families can give to their ASD relatives ... when the world gets tough, it helps to know your family has your back

P.S ... oh, and humour, the story is about humour .... finding comedy in the chaos .... the picture of "there are too many little kids at McDonald's" took over an hour to draw, with Adam periodically pausing, sitting back, reconsidering and adding more and more kids to the picture .... Adam's mom and I were laughing (so hard I had tears in my eyes) and Adam was looking at us sideways and smiling and drawing more kids .... then Adam's dad came in, saw the picture and burst out laughing too .... and when that picture was done, it was scanned and immediately sent out via e-mail for Laura and Ryan to enjoy ... humour is the other key tie that binds this family together ...




note: the concept of ASD individuals having a finite amount of energy to spend daily is well-put by Karla, an ASD adult who is an advocate and a mentor for others on the spectrum (click the link for more information on her "Token Theory"):
Karla's ASD Page - Token Theory

What is Autism Anyway?

Ever heard the Indian fable of the blind men and the elephant?


A king asks a group of blind scholars to tell him what an elephant is like. Each defines the elephant based on his limited contact with the animal - the one at the tail describes the elephant as a rope, the one at the leg says "no, it's like a pillar", the one at the belly argues that clearly an elephant is like a wall, the one at the ear says "it's like a fan!", the one at the tusk thinks an elephant is just like a sword, and the one at the trunk would stake his life on the fact that an elephant is the same as a tree branch. In some versions of the story a big melee follows with each scholar willing to fight to the death to defend their learned viewpoint.

Sound familiar?

The field of autism is plagued with arguments over definitions, diagnosis, treatment and philosophy - and for the most part, this has not been helpful to ASD individuals and their families. The constant conflict causes discussions to go around in circles, as each faction searches for an elusive all-encompassing theory that explains "autism".

But what if the blind men listened to each other? In some versions of the story, this happens. What if we recognized that different perceptions and perspectives could illuminate pieces of a larger truth? One that could only be understood by looking at all of the information, all together, without bias and preconceptions? What if we stopped arguing and started listening?

For what it's worth, to start the discussion, I'll share my perspective:

My practice is unusual, in that I work with individuals over a long stretch of time. The 2-yr-old that comes through my door stays with me through preschool, elementary school, high school and beyond. This has challenged all of my original "learned" viewpoints and changed my view of what autism is. I'm not sure that a single one of my preconceptions about the diagnosis has survived.

In my practice I bring the best that I have to each person that I see, and therapy never looks exactly the same for any two of them - I match the intervention to the individual. Some are very verbal (note: the first time language "suddenly" appeared in one of my clients, I thought my therapy and I had caused it; the next time it happened, I realized that some individuals are just "set" to do this language burst), some are moderately verbal and some are very low verbal. The difference in outcomes reflects differences in the individuals from the start - no "one size fits all" treatment or developmental path.

What am I left with in terms of answers? One thing. The question is wrong. The question "What is autism?" and the related question "What is the one definitive standard treatment for autism that will result in a 'successful' outcome for all?" are misguided and misleading. Autism is not just one thing. Defining autism as a "spectrum" is a good start, but the next step is realizing that members of that spectrum are the most "individual" of individuals, and that one approach, one definition, one philosophy or theory is never going to define, treat or educate them all.

Real life and real people are messier (and more interesting) than neat diagnostic boxes. Maybe if we all recognize our own blindness, the limitations of our knowledge and the complexity of the question, we could work together and do better for the people we are seeking to help.

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Background Noise - the annoying reality

I want to address a topic today that has a wide impact on all aspects of learning and functioning for most individuals on the autism spectrum - the debilitating effects of background noise. Here is a picture drawn by Brett (who has Asperger's Syndrome) showing his reaction to a regular classroom environment where the other students are chatting. The number in the bottom right-hand corner represents his irritation level (from Tony Attwood's emotional thermometers) - well past the "danger" level, at 100%.

For most neuro-typical people, screening out and damping down background noise is an automatic ability. Many people don't even realize how loud the background noise is until something specifically draws their attention to it. For example, have you ever attempted to audiotape a lecture at school or at a conference? From where you're sitting, the speaker's voice seems perfectly clear, and you have no doubt that the audiotape will be of high quality. Then you go home and try to listen to it - to your great surprise, all you can hear is voices of people in the audience, whispers and rustles, an annoying air conditioning fan from overhead, the sounds of footsteps - the speaker's voice is barely audible and certainly not clear enough to decipher the meaning of what he or she is saying.

Perception and processing of language is an active process involving multiple levels of your neurological system. The raw sound signal that hits your outer ear is a mass of sensory information. Your auditory system goes to work on that signal immediately, with automatic processes turning up the volume of the person you're listening to, and turning down the volume of everything else in the room. Your visual system feeds in information as well, with your eyes picking up non-verbal communication cues that fill in gaps in the auditory signal's information. Your knowledge of language allows your brain to assign meaning to indistinct words by quickly sorting through all of the possible things that might have been said (based on the flow of information). At the same time, your brain also scans the background for important information that you might want to know - like the sound of a fire alarm, or perhaps simply a question from another speaker in the audience that your ear will tune to, so that you can follow the flow of verbal interaction. All of these brain functions happen automatically, in milliseconds, so far below your conscious level of thinking that you are totally unaware of them.

Individuals with ASD may have weak or non-existent abilities to effectively process the raw auditory signal. For them, any group situation is a wash of babbling voices, overwhelming their senses and their ability to think. Often a rise in background noise can cause a behavioural outburst or melt-down. The ASD individuals that I see commonly report that the sound of human voices is more irritating than other environmental noises - it seems that words and language are harder to simply ignore (part of the brain insists on attempting to process the language, even if you don't want to).

Here is a movie created by a young friend of mine named Michael. Michael is verbal, but can have difficulty explaining in words why he does certain things - his drawings can be more revealing about the thought process behind his actions. He often draws pictures in sequences that are very much like animation "storyboards". To encourage this type of expression, I have frequently "translated" his drawings into short Flash movies (by scanning his drawings, importing them into the animation program, and making his drawn "plans" come to life). This short movie clip originated with a spontaneous drawing that Michael made of a machine he called the "blah blah sucker" - a fabulous invention that would suck the annoying words out of the background of his world. The storyboard sequence of "what happens next" was drawn during his session with me - I love the humour that he shows in the ending:

Michael is currently learning how to make animated movies himself, using a simplified version of Flash (called "Koolmoves") that has a more direct user interface than the full Flash animation program (easier to simply work on the screen, choosing tools from a toolbox, but not having to deal with putting items in layers or specifying "tweens" that control the movement pattern between key frames). My hope is that this will provide another channel of expression for him, and perhaps also lead to development of skills that will help him find employment as an adult.

So what's the moral of the story? Pay attention to the environments that ASD individuals are exposed to, especially when you're asking that person to use language, or learn something new. Understand that an ASD student may receive 0% of the verbal information given in class, so they should always have a visual version of the information to look at while the teacher is talking, and a permanent copy given to them to keep for study (don't make them take notes while you talk). Use noise-blocking headphones to subtract background noise during classroom work periods - for students who are self-conscious about standing out, try using ear-bud headphones with a personal music player, so the music can block out the sound of external voices (you may need to experiment to see what "blocking" auditory information is helpful vs. distracting). If the ASD person is participating in an activity where the background noise is high (eg. gym class, social activity like bowling), make sure key information is in a visual format, give information ahead of time (eg. as a social story), and don't expect a lot of conversation out in the hub-bub. Give the ASD student access to quiet spots to work and learn (to be used with your encouragement, but at their discretion). If you're a job coach, pay attention to background noise, when you are assessing co-op and permanent work placements for ASD clients. For family members, make sure the home environment has quiet "escape spots" so that the ASD individual has a chance to get away from the noise and unwind, decompress and recharge - make home a haven from the chaos they must constantly deal with out in the larger world.

This is another example of how important it is to have a way to look at the world through the "eyes of autism". Drawing about difficult situations reveals key information that helps those of us on the "outside" to unravel, understand and find solutions to the challenges that every-day life presents for those living on the spectrum.

It's not rocket science - please, try this at home!

I want to share with you a story from a mom, who saw the information about Adam and the use of drawing for communication when I presented it as a research poster at the 2010 Geneva Autism Symposium in Toronto. We spoke briefly during the poster session, and when she got back home, she decided to try the techniques out with her son. With her permission, I am sharing the story of what happened next (in her words):

"I ... have a 15 year old son on the spectrum - verbal, but with significant academic delays ... I had to share this story with you.

Your approach of using drawing rang a bell with me, because Jake has always been very visual. As I mentioned to you, though, he does not enjoy drawing (or any type of art for that matter), and does it only under duress. You suggested that I draw for him, which was an idea I liked a lot. Anyhow, I came to the conference looking for ways to move forward on making plans for Jake's future as an adult on the spectrum - his delays present some big challenges. A second challenge has been his lack of participation in that planning. When I've asked "hey Jake, what do you want to be when you grow up?" - usually in the context of also asking his four siblings, his response has consistently been "Pfft. Iiiiiii dunno", or something similar.

This morning, he and I sat down with a sheet of paper and a pen. He was immediately intrigued. I drew a series of boxes - like a cartoon. The first was labelled "1995, Age: 0", and showed a stick-baby with a speech bubble saying "gaga". Then "2000, Age: 5" - a little stick kid playing a plastic saxophone (favourite toy at that point). "2005, Age: 10" - slightly bigger stick kid in the Toronto Maple Leafs shirt and hat that he used to wear to drive us all CRAZY at that age. "2010, Age: 15" - stick teenager playing the drums (he takes drum lessons now). I continued: "2015, Age: 20" - he'll still be in school, so I drew a bigger stick-guy with his high school uniform sweater, holding some books and his laptop. Finally, I got to the last box. I labelled it: "2020, Age 25", and handed him the pen. HE BLEW ME AWAY!!! He drew this really detailed picture of himself playing in a band with four of his friends. The two lead singers ("just like Blue Rodeo") got speech bubbles saying "sing", and everyone was playing an instrument and labelled by name. The style was as rudimentary as mine had been (and in keeping with how he would normally draw), but the detail was like nothing I'd ever seen.

When he finished, he put down the pen, looked at me, and said "That's my dream. I want to be in a band with my friends. And not just a FUN band - a WORLD FAMOUS band!" Then we talked about how that might happen. What you'd need to learn, for example ... what that trajectory might look like. He has a dream!!! He's obviously had it in there for quite some time, and now, thanks to you, it's out, and we can talk about it and work towards it! My husband and I are already brainstorming about how else we can use this technique with him. So, you know - THANK YOU!!! You can't imagine what this means to us."

Jake's mom scanned their drawing work, so you can see it below:

And a follow-up note came with the scanned picture:

"... about a month ago now, Jake played drums at a show that his music school put on at the ... arena. He was nervous about getting up on stage in front of his peers, but he overcame his anxiety. He blew the place away, and made the front page of our local newspaper as a result! (Not sure if you can tell in his drawing, but he's the drummer - the drum kit is to the right, and he's holding a drumstick.)"

So in contrast to the usual rider you might see on a television program ("do not attempt this at home"), I would say instead: "Please, try this at home. See what happens." Then do feel free to contact me and let me know how it went (what worked, what didn't) and I'll do my best to suggest some useful "next steps".

Happy drawing! ......... Sheila B

Expressive drawing as "augmentative" communication for verbal ASD individuals

Drawing for communication is also a very effective technique for more verbal ASD individuals (Asperger's and PDD-NOS), especially when dealing with emotional and social concepts (a general area of weakness for any ASD person). When emotions run high and life falls apart, the high distress frequently causes language skills to retreat, and words become a poor tool for working through the challenging situation. In this context, drawing is used as an "augmentative" communication tool (where the drawing "augments" or adds to verbal language to provide more detailed and complete information).

Published research has shown the effectiveness of putting social and emotional information into a visual format for individuals on the autism spectrum (eg. Carol Gray's "Social Stories", Tony Attwood's emotional "thermometers" and "toolboxes"). Expressive drawing adds another dimension to this teaching mode, because the ASD individual processes and acts on the information: presenting their own point of view, generating their own strategies and solutions, and predicting potential outcomes. This type of active problem-solving leads to integrated and flexible social learning, building a skill set which allows the individual to apply the information to novel social situations.

Let me introduce you to another young man on my caseload who has been using expressive drawing to solve difficult social situations for many years now. His name is Brett, he has Asperger's Syndrome, and he has very kindly given me permission to share some of his work with you. Here is an example of his drawing about a tricky upset that happened at school:

Solving the problem started with the green square - this was the event that was visible to others - a loud angry upset at school when the teacher tells him the final copy was supposed to be typed - we went back in time visually to see what the real problem was. Square 1 shows the night before, where Brett is trying to get his homework done, but is having great difficulty understanding the details. He wants his dad to come and stand by the computer while he works, so he'll be available for questions. Dad says "no", so Brett comes up with a strategy where he prints out multiple versions of his written work and brings them out to his dad for editing. Meanwhile, his older sister takes issue with the fact that he's wasting paper doing this ("You're killing all the trees!"). Square 2 shows how "happy" he is to be doing his homework. Square 3, the torture continues as dad edits and changes are required. In square 4, he gives up and simply hand-writes his last version. The circled numbers included in the pictures represent how "hot" Brett reported himself to be on his "angrymometer" (from Tony Attwood's techniques) as the incident evolves. In square 6, Brett comments that "Dad screws everything up". Once we knew in detail what was behind the outburst in class, it was possible to make effective strategies for "next time".

Brett is currently finishing high school, and these techniques have helped him to become an effective and flexible social problem-solver (with an excellent "dark" sense of humour that helps to counteract his angry reactions to social mis-steps). His perspective on everyday social interactions is often surprising and always enlightening.

When I spent a lot of time in the schools, I used this type of problem-solving on an almost daily basis. It's something that can be developed with any ASD student, whether they know how to draw or not. All you need is some paper (or a chalkboard) and practice at rendering key parts of a social situation in simple line drawings (it's not "great art", it's visual information - stick figures are good). I have presented these techniques at many teacher workshops over the years, and a lot of the teachers who attended those sessions have since incorporated the drawing techniques into their "bag of tricks". Let me end with an excerpt from an e-mail I got a few days ago from a long-time teaching colleague and friend (after she took a look at the website and blog):

"I use cartooning all the time ... daily in my job as High Needs Coordinator .... This method works every time for me as we attempt to uncover the truth about 'what really happened when you lunged across the table and squeezed the living daylights out of that kids arm!' It's amazing what we learn ... and we always do the Next time .... which does really prove to work over time."

It's not rocket science, and it does work - take a chance and give it a try!

Feeling understood is as important as being understood

Individuals with autism who lack the skills to communicate with the larger world are often upset. Part of that upset comes from the inability to predict everyday events and to express basic wants and needs. But a deeper cause of the upset is often the feeling that others don't truly understand their thoughts and emotions and why they find a certain situation difficult or intolerable.

School recess was often a distressing time for Adam - too many kids, too much action, too many interactions. We frequently dealt wih post-recess upsets during his early school years, with Adam unable to calm down or say what was wrong. In grade 4, we had a break-through. A classmate of Adam's came in after recess and told the teacher that she had seen another boy harassing Adam at recess. I sat down with Adam, and drew a picture of the boy kicking him. Adam was crying and nodding his head and repeating "no kicking". I drew a red circle with a stroke through it over the picture, reassuring him that this was not allowed, and that the teacher would make sure that it didn't happen again. For the first time that school year, he was able to calm down and do his afternoon school work. What was key in this situation was the clear visual communication to Adam (through drawing) that we all knew what had been happening on the playground, and the follow-up message (transmitted through the red circle over the picture) that it was against the school rules and that the other boy was in the wrong. The relief that Adam felt over finding out this information was palpable.

And the post-script to this incident was also very interesting. Adam went home that night and drew the following two pictures, showing him taking his revenge on the boy (I love the cartoon lump on the boy's head and the motion marks indicating him spinning around - I also love the clearly expressed emotions on the cartoon faces):



In real life, Adam never touched the boy, never acted out what he drew - but the drawing of these pictures seemed to give him closure on the incident, and he was able to move past it. We are all familiar with this type of mental problem-solving (the "why I oughtta ...!") and it helps us to function in our daily lives without clonking all the people who annoy us on the head. This is a higher level function of communication than simply transmitting basic wants and needs. It reflects the use of imagination to work through something mentally so that it doesn't remain an insurmountable problem in the real world.

Later that same school year, Adam was once again showing regular post-recess distress. This time however, he was able to spontaneously draw out was was upsetting him:

The picture he drew shows several boys chasing Adam - the boys thought it was a fun game - Adam thought he was in mortal danger. The teacher's reaction in this situation was terrific. Once Adam drew the picture, she handled it in the same way that she would with any recess altercation with any other student. The boys who had been chasing Adam went to talk to the principal, and that discussion helped them to understand why he was upset. Then the boys drew apologies to Adam:

The drawn apology helped Adam to become calmer about the situation, because it confirmed for him that people understood his point of view, he had rights and the school rules would protect him. At the same time, the other students and teachers gained respect and understanding for the feelings and perspective of the real person behind the silent exterior.

Real communication is so much more than pointing to pictures of objects and activities, and being able to indicate "yes" and "no". The strength of drawing for communication is that it gives non-verbal ASD individuals a way to express more subtle and higher level thoughts and feelings. This type of communication builds confidence and a real sense of control and belonging in a world that is too often arbitrary and unpredictable from the ASD perspective.

Getting Perspective

When you live or work with a person on the autism spectrum, you need to develop good problem-solving skills. Upsets happen on a regular basis, and they can often be "show stoppers". Many times, we are asking the ASD individual to understand the perspective of the "rest of the world" and giving them the message (intended or not) that they have to "get used to it" and "that's just the way things are". But why should the social majority get to define the solution and say what's right?

Perspective is an important part of problem-solving - if we're going to find a workable solution, I want you to see my point of view and you need me to understand where you're coming from. It has been my experience that if you really want an effective and lasting solution to a challenging behaviour or upset, the place to start is to see the situation through the eyes of the person with autism. This can be a difficult proposition, especially if the person with ASD has weak (or non-existent) expressive communication skills. Keep in mind that even an individual who can usually express themselves verbally can find that their language skills desert them when emotions run high.

To get around the expressive language weakness, drawing is an excellent tool.  Following is an example from Adam's life where expressive drawing was useful in solving a real-life problem:

When Adam was in junior school, a program was put in place to teach greetings – he panicked in the hallways and was very distressed when other students greeted him. We wanted to find out why he was upset, so I drew the first picture (setting up the situation) and he drew the next 3 unprompted.

The girl says “Hi” – the locker door slams. The third picture is, I think, the most interesting – it took us a little bit to figure out the perspective – that’s Adam hiding inside the locker looking out at the scary “greeting girl” through the locker vents – note the clearly expressed emotion. At last, the girl gives up, and Adam is relieved and free to leave. We didn’t know why the greeting interaction was so scary for him, but we respected the fact that it was, and dropped the program. Interesting that several years later, in high school, he spontaneously started to greet people. He was ready, the situation made sense to him, and most importantly, his perception had developed to the point where he could reliably tell one person from another.

Real solutions happen when all of the individuals involved in a challenging situation feel that they have been heard and understood, and where the resolution shows respect for each person's point of view. People with autism have their own way of looking at the world, their own slant on events, their own ideas about what would make things better. Our job as parents, teachers and therapists is not to make ASD individuals do things just like everybody else, it's to help them find a way to be comfortable and cope with a world where the social rules were not made by them or for them - when both sides give a little, it tends to work out better in the end.