... of babies and monsters

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

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

Sentence construction & comprehension - January 2000 - by Adam

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

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

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



... the baby takes action:

... the lion gets a rude awakening:



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

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

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

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

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

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


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

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

picture by Adam

... no contest!!!

Transformations and Everyday Magic

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

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

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

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

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

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



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

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

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

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

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

"Transformations" a movie by Michael

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

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

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

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

Comfort in a cold world

A good friend gave me some beautiful red socks the other day ...

... warm cheerful red socks, dropped into a cold spot in my life. You see, my sister is ill right now, and my heart and mind are consumed with worries for her and her family. My friend knew my distress, and she gave me the socks to let me know I was not alone, that she was thinking of me and my sister and wishing us both well. This wonderful unexpected gift set me thinking ...

The world is often a difficult place, with harsh events and seemingly overwhelming challenges; and perhaps no group of people feels this more constantly than those who are dealing with autism. As I was lying in bed early this morning (not sleeping and realizing that I wasn't going to get back to sleep), a story about Adam came into my head. I think it fits, so here it is:

At the time of this story, Adam was in high school. It was springtime, and he was not feeling well because of his allergies. Still, he got up each morning and went to school and did his best. One day, while he was doing some language work with his EA (unscrambling sentences and drawing out their meaning), he seemed stressed and distressed. Then on the side of his paper, he started to add some extra details:

... first this small sad face in the bottom corner ...

... then a whole pageful of sad faces (with one happy face added to emphasize the contrast between how he wanted to feel and how he did feel) .....

It turned out that the night before, Adam had gone out with his mom to get the new Disney movie that he had been wanting to see. Disaster. It was not available in VHS format, instead it was one of the first movies that were only available in DVD. And a DVD was not okay ... it wasn't what Adam expected, and it was a change he couldn't deal with, especially in the spring season. They left the store with Adam in tears.

Next day at school, another "tangent" picture was added to the language work:

Adam wanted to share his happiness that his problem had been solved. We had drawn and written out a comic strip story for him about the change in movie format (from VHS to DVD) assuring him that the movie itself would still be the same. It was challenging, we had more tears, but in the end he tried it and it worked out.

The interesting thing about this story is that the purpose of Adam's communication with the faces was to share his feelings, not to ask for a solution. It was important to him that the school staff understand the source of his sadness and then his gladness. Communication, not for physical wants and needs, but instead a request for human understanding, kindness and compassion.

At the point of contact, therapy is more art than science - yes, you need to know what you're doing and why, but you also need to respond to the person who sits (or hops) in front of you ... you need to focus on the human connection first.  As therapists and educators, we are often poking at the "sore spots", dealing with the challenges and asking our clients/students to do things that are unfamiliar and difficult. Even so, the person with autism should look forward to seeing you, should run towards the door, not away to hide in the closet, when you ring the bell. Regardless of your therapy approach, the person who is the focus of that intervention should feel like you are red socks in their life, not an icy blast of sleet.

One of the things that helps all of us to go on through adversity, to get up in the morning and face another day, is the presence of caring friends ... someone to listen, share the hurt, find the laughter ... someone who lets us know that we're not standing sockless and alone in the snow.

I'm off to see my sister and her boys (little and big) this weekend .... although I haven't got the power to change the circumstances, I'm hoping to bring a pile of warm socks to push back the cold ...

... what does success look like?

We all want to be "successful" in life .... we want it for ourselves, and we want it for the people that we care about, especially our children. But what does success in life really look like? It's a concept that's hard to define and even harder to measure.

The field of autism is currently highly focused on "measurable" outcomes. The problem is that what can be most easily and reliably measured may have little to do with what you're actually hoping to evaluate. In the words of Albert Einstein:

"Not everything that can be counted counts, and not everything that counts can be counted."



 For example, consider trying to measure success in a social situation:

drawings by Adam

What separates a fabulous party from one that really tanks? The variety of refreshments served? The density of decorations per square foot? The frequency of greetings heard by the doorman? The number of jokes told per person? Any of these measurable factors may be related to what you want to know, but they're not exactly definitive, are they?

To truly define what separates a great social occasion from a disastrous social occasion, you have to move into concepts that are more subjective, and by definition, less easily measured. Did you feel comfortable, warm and welcomed, or anxious, stiff and marginalized? Did the event flow so that you lost track of time, or were you checking your watch every few minutes to see if you'd reached the minimum polite threshold and could exit? Did you relax with friends, laugh and enjoy yourself, or did you analyze and approach each encounter like a military engagement, guarding your words and worrying about the reaction of your conversation partners? Did you enjoy yourself? Would you go back voluntarily?

Social success is not determined by saying the perfect words or greeting a target number of people - instead it's defined by inner feelings of comfort and enjoyment while interacting with other people.

And another question to consider about "success" in therapy:

Sometimes the knowledge and skills we teach make things more (not less) distressing. I regularly teach ASD students how to pay attention to and "read" the non-verbal social communication cues broadcast by other people - this is critical information for social interaction. But it can also be overwhelming information, and once you know it's there you can't ignore it.

When Adam was younger, he was not aware of how his behaviour affected others. When he began to draw, he started to notice more about other people, with both positive and negative effects. The positive effects included voluntarily interacting with a wider circle of people, accompanied by growth in his functional communication skills. The negative effects were more subtle and best illustrated by Adam himself.

This is a drawing from Adam's high school years. During allergy season (spring and fall), Adam would become noisy and would make non-verbal sounds as he worked in the school classroom. This was distracting for the teacher and other students, so he and I addressed it during one of our language sessions. I wrote the sentence "Adam is making noise while the teacher is talking" and he illustrated it. The black drawing is what he drew first (look at his happy facial expression). Then I added in the blue information (the noise that he wasn't aware he was making out loud, and the reaction of the other people in the room):

And here's the picture he drew next, after he processed the additional information I had added to his picture:



Look at the change in his expression, and in the expressions of the people around him. On the one hand, it was important social information, and my goal was to help him to be successful in the classroom. On the other hand, because of this information, he started to feel the disapproval of others, and we had a period of time where he began to doubt himself, to worry about whether other people liked him and thought he was a good person. Double-edged sword.

So what is success then?

Following ASD individuals over the long term in my private practice has challenged and changed my ideas about what constitutes "best practice" in autism intervention. Defining success in social and communication interactions with other people is largely about inner perception and emotional reaction. Intervention is only successful if the ASD individual also (eventually) agrees that the change is positive and something that they want.

When we devise programs aimed at "improving" life for individuals with autism, we need to tread lightly and keep the wishes, perspective and personal preferences of the ASD person at the top of our priority list. Intervention will not look the same for every individual, and that's not only okay, it's desirable. The challenge of evaluating progress using subjective outcome measures is more than offset by the fact that you're helping the individual to build a life that they like, that works, that's "successful".

I started this post with a quote, and so I'll end it the same way, this time with words from Aristotle:

"The worst form of inequality is to try to make unequal things equal."

... post-script to yesterday's blog post

In today's newspaper, a local columnist shares the bus driver's perspective on the original incident and the fall-out:

Kelly Egan: fired bus driver speaks out, Ottawa Citizen, Nov 18-11

I hope that OC Transpo and the City of Ottawa will re-consider their handling of this situation.

Autism in a public place - part 2

The news story I referred to in last week's post has not come to a happy resolution. Here are some of the latest articles from our local newspapers:

Union appeals driver's firing, Ottawa Citizen, Nov 16-11

Fired bus driver has has stressful year: Union, Ottawa Sun, Nov 15-11

Scape-goating the driver in this situation is a "band-aid solution" that's really no solution at all. Nothing has been done to address the basic underlying problem - a growing number of young people with autism are out in the community, and the community is not knowledgeable about how to interact with them.

And the "solution" has caused new problems:

There is no question that the actions and words of the bus driver were inappropriate and unacceptable. The young man with autism was distressed and traumatized by the original incident; but when you read the news articles, you find out that he also now has extra distress caused by feeling partially responsible for the driver getting fired.  In my experience, because of the young man's autism, this second distress will be hard for him to process, understand and put to rest - all he asked for was an apology, instead he's been given a burden.

And what about the driver? Clearly he is a man under great personal stress - losing his wife and mother to cancer, and then being the caregiver for his seriously ill father - surprising that he was able to make it to work each day, not surprising that he was riding the edge of self-control while on the job. After my daughter died of cancer, I was not myself for many years, and I know that at times my free-floating anger at the unfairness of life was focused into extremely angry reactions to relatively trivial events - this is not an unusual response - grief isn't a dreamy soft melancholy feeling, it's hard and sharp with pointy edges. The driver in this case needs compassion, mental health leave, perhaps a change of job from behind a wheel to behind a desk, and in good time, some sensitivity training to help his understanding of people with less visible disabilities. What possible good comes out of firing him?

It's hard to have a social disability like autism, and it's hard to interact with a person with autism if you have no knowledge about the diagnosis. What's needed in this situation is less punitive action and more understanding and education ... it's the only way to truly solve the problem.

Autism in a public place

A young man with autism ended up in the news this week in connection with a late-night altercation on a city bus. The story highlights the vulnerability of people with autism when they go out into the public sphere:

 Bus rider wants apology from driver

The problem for people with autism is that their disability can be largely invisible … until suddenly, it isn’t. When the general public sees someone in a wheelchair, or holding a white cane, they will usually be kind and may even go out of their way to accommodate the person’s obvious disability. No one would dream of berating the disabled person … telling them to get out of their d--- chair and walk up the steps, or just read the f---ing sign. Autism is a profound disability in social communication and interaction – it’s not a choice, or an excuse, it’s a neurological difference. When a person with autism makes glaring social errors in a public place (missing the social cues to be quiet, not discriminating between public and private topics, saying out loud the things that other people “keep in their thought bubbles”), there is little tolerance because their disability is not obvious to those who don’t know autism. The behaviour looks like rudeness and callous disregard for the other people in the situation.

I worry all the time about the teens and young adults on my caseload. Most of them rely on public transit to get to school and work placements – their bus pass is key to their independence. But any given time they step onto a transit vehicle could be the time that ends up as a front page newspaper story. Buses are loud and crowded with all sorts of people, any one of whom could take offence at the odd language or behaviour my clients might show, any one of whom might give them a loud and angry reaction. People with autism are already stressed when they’re in a crowded public place – when you add in (from their perspective) random anger and abuse from strangers, you can cause that person to totally disintegrate. It was fortunate for all people involved in this story that the young man with autism retained enough presence of mind to make it home safely following the altercation with the bus driver.

The city needs to address this topic with all of their public employees. The population of young adults with autism is growing, and they are not going to stay at home in their rooms. Sensitivity training (along the lines of what we have provided for years in school situations and through our Typical Teens social groups) for all city workers who interface directly with the public will be a key piece in solving this problem. I have found that once people have a true understanding of what the world looks like through the eyes of a person with autism, the rest of the solution naturally follows. Education is the answer.