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.

Drawing - more than illustration

If you're reading this blog, I'm going to assume that you know someone with autism, and that you're looking for information on how to reach and teach them. That's good, because this blog and the connected website (Autism and the Art of Communication) are all about sharing practical therapy and teaching techniques that I have developed over more than 20 years of working with this population (the website is currently under construction, as I come up to speed on the technical side of website production, so please be patient).

The first time I knowingly worked with individuals on the autism spectrum was in 1989, when I took a job with a school board specialized unit for adolescents and young adults with ASD. Starting with the older group was an advantage, because it quickly showed me the limitations of many established conventional therapy approaches. I met multiple people who were clearly intelligent, but had no effective means of communicating with the rest of the world - some had opted to withdraw, others had regular outbursts of frustration and anger. It was in this setting that I met my first "artist" - an non-verbal older teen boy who endlessly drew elaborate images of playing card faces. My training with teaching brain-injured adults to communicate using alternate modes said that it should be possible to use his drawing skill to bridge the communication gap. Unfortunately, at that time I was too green and he was too set in his patterns for us to make any headway, but the idea stayed with me.

In 1993, I met Adam. It was a time of professional change for me, as drastic cuts in public funding for speech-language pathology in Ontario bumped many SLP's (myself among them) from public service to private service contracts. Adam's family was relocating from the States to Canada, and they contacted me to see if I would take him on as a private client. I told Casey (Adam's dad) that I didn't actually have a private practice - his response? "Can I convince you that you do now?" And so it began.

Adam was three years old and profoundly non-verbal when I met him - he said "mmm" for "marble" sometimes. I was a communication professional certain of what I didn't want to see at an older level, but uncertain about how to change that picture. I have to say that Adam has been very patient with me over the years, and has always rewarded my therapy breakthroughs with a look that can best be described as "Could you not have just done that first?"

Initial therapy sessions were flitting bits of attention: putting fingerpuppets on his toes as he sat in a truck tire, looking at a page of a picture book under a blanket, bouncing balls down the steps in the back garden. Many times I went to his house, determined to tell his parents that they were wasting their money, and that I didn't know how to reach him - but then he would give me the slightest bit of something: a look, a brief connection, a surprise response; and I would say to myself "okay, one more week". One day, out of desperation, I began to draw for him, simple cartoon pictures that could match the imprecise sounds he was producing - it worked - he stayed in one spot, he made more sounds to get me to draw more things for him, we had a connection.

In those early years, we used the drawing as a platform for shared understanding. I drew endless vignettes and stories, explaining the world to Adam. We also used many visual computer programs to expand his knowledge of the world - reading and math programs that included the cartoon characters that he loved. Watching animated shows was one of his favourite pastimes - he would often rewind and repeatedly watch the same few moments of action, and his parents accomodated him in this, since it seemed important to him. Later on, when Adam became adept at using his drawing for expressive communication, it became obvious that during those endless rewinds, he was studying the cause and effect of physical and emotional interaction. A good lesson for all of us - just because a non-verbal person can't explain why they're doing something, doesn't mean that there's no purpose to their actions and choices.

I would not have predicted that Adam would develop usable coherent drawing skills. His fine motor skills were so severely affected that we took all fine motor requirements out of his academic program starting at preschool level - he used stickers, letter and number stamps, and computer keyboard to give answers in school. At the same time, he worked with an occupational therapist who patiently encouraged his fine motor development through copying tasks and games with little language load. If you had asked me at that time whether Adam would ever write or draw, I would have told you that it was highly unlikely, and that we were encouraging him to use a keyboard instead. Which only goes to show that you shouldn't make pronouncements about the future, especially when you're dealing with people as individual and complex as those on the autism spectrum.

When Adam was eight years old, he spontaneously drew a picture of himself on a large easel in the classroom, in the exact same form as I had drawn him endless times over the past four years (he even used a red marker, which was the colour we had chosen for his character in the cartoon comic strip stories I drew for him about everyday life). What a surprise. His expressive drawing took off from this point. Using a "follow me" approach I began to formally teach him how to represent objects with drawing (take a look at the website under "getting started" for more information about this technique). This process was made easier by the fact that everything I had drawn for Adam up to that point was stored in his very detailed visual memory - it was a matter of helping his motor system to catch up to his visual intellect.

Over the years, we have used drawing for all of Adam's academic learning (you've never seen the food chain represented with such action and emotional reaction). We have used the drawing as a "scaffold" to teach conventional language (first written, then verbal) and social interaction skills - we have worked out difficult everyday situations, discovering the often surprising sources of his stress and distress reactions, helping him to deal with changes in his life, new situations, other people.

Adam is now 21 years old, and drawing is still his clearest form of expression. Although he can now speak in generally intelligible full sentences, when he is upset, sick or suffering from allergies, he still loses his verbal language. Because he has expressive drawing, he is never left without a voice. He is a confident and generally happy person who knows that he can control his world with communication - much different from the distressed and frustrated young adults that I first met.

I have used the techniques that I developed with Adam for many other ASD individuals in my practice. These techniques have turned out to be widely applicable (for both verbal and non-verbal individuals), and I use them to some degree with all of the people that I work with. I have a lot of practical information to share, and will do my best to put it out here in a form that's helpful to any/all who would like to try it out. Feel free to post comments and questions and let me know what you're interested in hearing more about.

Sheila Bell