Autism and Unspoken Love

"What's in a name? That which we call a rose by any other name would smell as sweet" ~ William Shakespeare, Romeo and Juliet

Can love be understood and experienced if a person can't even say the word? 

There is a common misconception that individuals on the autism spectrum are emotionless, and that misunderstanding is magnified when an individual is also non-verbal (for more on the this topic, read this blog post from our archives: Drawing Out Emotion in Autism - May 2013) My experience (working with many ASD people over the years) has been that while emotions in autism may not be easily named or conventionally expressed, they are certainly strongly felt.



So, on the topic of understanding love, I would like to share a visual story that Adam drew years ago when he was in elementary school and mostly non-verbal. At that time, he was often overwhelmed by the larger world, and to most people he looked like he had two states: sort of okay and distressed. Those of us who were privileged to know him better would also see laughter and excitement (usually connected to the action cartoons that he loved to watch time and again), but he didn't physically convey more subtle emotional states.

One day, I gave Adam a "story starter" picture of a man with a fishing pole, hoping to get some sort of "action and reaction" coherent storyline. The first four frames of the story are definitely action-packed:

Man and fish: part 1 ... drawn by Adam, 2001

But frames 5-8 of the story were an interesting surprise:

Man and fish: part 2 ... drawn by Adam, 2001

... self-satisfied man (thumbs up!) leaves the fishing spot carrying the "catch of the day" and brings it home with a smile to his wife, she in turn cooks up his fish offering and then the two of them sit down to a lovely seafood dinner. A warm picture of love shared between a man and his wife.

Once again, Adam's drawn communication had revealed thoughts, feelings and social understanding that were not at all evident in his interactions with the world. He showed us that he understood the emotions of love and caring for other people and knew how people expressed those emotions in their actions and interactions. Not being able to say it in words or facial expressions or physical actions did not mean that he was unable to feel the emotions or intellectually understand the social dynamic. Even though we set the bar high and believed in Adam's ability, we had underestimated the complexity of thinking he already had - a valuable lesson for all of us, and one that has been repeated and reinforced many times over the years since he drew this story.

More and more non-verbal autistic individuals are finding alternate ways of communicating (through typing, through art, through music). What these individuals show at a surface level is often not at all what's happening underneath. Presume competence, develop alternate communication channels, listen carefully and respect the autism perspective.

"All people with autism must be offered some way to communicate because we have minds, and thoughts, and feelings ... Life is beautiful the autistic way." Henry, 14-yr-old with non-verbal autism who communicates by pointing to a letter board (from his Roses are Red for Autism blog)

Drawing out Emotion in Autism

The other day I was asked this question:

Do people with autism understand love? How about emotions in general?

And this was my answer:

Yes – I’m actually just in the process of writing a blog post about this topic. It is a common misconception that people with autism lack emotion. In fact, they tend to have very strong emotions that can overwhelm them. Often emotions are not well categorized and sorted, and one of the important things to address in intervention is understanding, sorting , naming of emotions, as well as defining degrees of emotion – this helps the person deal with their own emotional responses (and those of others) in a better way.

Emotions can be hard:

 

 

..... especially if: when you feel like this inside .....

 



.... THIS is the only answer that comes out when someone asks: "How are you?"

Note to all parents, teachers & therapists: PLEASE do not teach a child to automatically answer "I am fine" to this common question (this response is incredibly difficult to un-teach, and results in sick/injured/hurt/distressed people telling you they are just "find")

Think of a time in your life when your emotions overwhelmed you - when events in your life were so "big", so unmanageable, so unfathomable that you were swept away by a tide of emotion that rendered you speechless, thoughtless, disorganized and discombobulated - perhaps to the point that a pathetic word like "sad" or "angry" or "scared" just wouldn't begin to encompass the experience. I really want you to clearly recall this time and state before you read any more .... ready?

This is often what emotion is like for those on the autism spectrum. Not too little feeling, but far too much. With no automatic system kicking in to name and sort and process, every feeling can become overwhelming - a "happy" surprise can lead to a meltdown just as easily as a negative or sad experience.

Emotional education is important, but it's challenging to directly teach a subject that is not usually taught - if you're a "Nypical" (love this term from John Elder Robison), you may think of yourself as very skilled in this area, but it's all automatic processing for you, so you don't actually know how you know what you know (if you know what I mean), and you probably won't be as good at explaining and teaching it as you think.

 

Drawing is a great way to approach the direct teaching of visual cues that connect to emotion:

Here is a quick overview of the small drawn figures I use to teach body language and facial expression:

With a few simple lines, you can "explain" the visual cues of emotion much more effectively than you can with verbal language (in this instance, a picture really is worth a thousand+ words).

This type of teaching results in a gradual learning process - the skills involved in seeing, processing, integrating and understanding the transitory subtle visual cues that code human emotion are incredibly complex, but they are teachable.

Kevin and Adam are both low verbal adults on the autism spectrum, and they have been learning about people and emotions for many years now. See some of their recent drawings:

Happiness for Mr. Bean is a trip to the condo.

Being "shushed" makes Adam feel a bit sad and uncertain.

Sadness for Kevin is an unexpected closure of a favourite store.

Adam draws the unhappy shock of a boy blown back by a lion's roar.

Raymond (Kevin's brother) is excited about graduating from university.

Loving bond between a seal pair.

Dad shows the universal reaction to computer malfunctions.

Being able to freeze one moment in time, through drawing, allows it to be examined and understood. And recently, the beautifully simple drawing animation programs on the iPad have the extra benefit of letting us put these transient emotional moments in the context of a visual timeline:

CLICK HERE FOR ANIMATED VERSION!!

Understanding and taming emotions is a critical step in developing self-confidence and self-control ... and art is a powerful way to reach and teach when human emotion is the topic.

Pick up a pen and give it a try!

 

Video drawn by Adam on the iPad using FlipBoom Cartoon





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