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Sunday, November 27, 2011

... 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."

Friday, November 18, 2011

... 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.

Thursday, November 17, 2011

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.

Thursday, November 10, 2011

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:

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.

Sunday, November 6, 2011

... an ode to all the small dictators

I love a strong personality ... I'm a fan of the small people who refuse to go quietly, who turn a room upside down, who tell you in no uncertain terms that if it's "your way or the highway" then they're "on the road again ...." I'm not sure what this says about me, but I definitely have a gigantic soft spot for all the crabby little kids who just want to be in charge of their world - they tend to grow up to be interesting adults.

When you pair a strong personality with a communication disorder like autism, you can end up with a lot of spectacular show-downs. The child has definite ideas of what they want their world to look like, how they want people to behave, how they want situations to turn out, but they don't have the communication and social skills to do it in a "civilized" way .... so you get loud tantrums and melt-downs over seemingly trivial events. Adults around them often respond by becoming more unbending, drawing the boundaries in closer, giving less leeway and requiring a higher degree of compliance to every rule. Paradoxically, the tighter the rules, the farther out of bounds the behaviour can go.

To save sanity on all sides, I'd like to share an approach I've found useful:

First, do a little research by observing typically developing children (especially those who are strong-willed and opinionated). Really listen to the content of what they say; pay attention to how much time they spend talking about what they will do, what they won't do, what they might do, why they can't follow your direction right now, why they want to try a different way, why they need to dress like a cowboy this week ..... You'll discover that language is the civilizing factor, and that typically developing children are frequently allowed to bend and break the "usual" rules (without having to resort to negative behaviour), if they can give a plausible reason or simply fatigue the adults with verbal negotiation, and that the best verbal negotiators are generally viewed as the most socially mature (even though they might not follow the rules as closely and carefully as their quieter peers). It's normal and developmentally typical for young children to try to modify the rules of their world - they step up in social maturity as they learn what strategies work and what ones don't.

Next, you need to find out the perspective of your child with autism - no information is more important when you're trying to find solutions to difficult behaviour, but figuring it out can be very difficult when a child is young and has weak communication skills (even the most verbal ASD child will suffer language break-downs when the topic is emotionally charged). This is where drawing techniques are invaluable. Get big paper (or a big chalk board or a big white board) - you'll need lots of space for adding details. Then sit down (or stand, or take breaks between laps around the room) and draw a "starting scenario" - maybe it's the physical set-up of the child's classroom:

... maybe it's the situation that was happening when the upset occurred:

Put in the information you know, or can guess (in the above picture, you might know that the number fell off the calendar just before all h*** broke loose, and your guess is that this caused the distress). Then start to talk and draw: you add details, let the child add or delete details (either verbally or with drawing), use the drawing as a visual focus that allows the child to let you know what they thought was going on, and what they thought was dangerous, scary or out-of-control (eg. what did they think would follow the number falling down?).

If your child seems comfortable with the drawing discussion, you can try to see what was going on at the "moment of impact" (note: initially this may be too much, pay attention to your child's response and prepare to pull back if direct drawing of the negative event is over-whelming). Draw out a vignette of the negative behaviour:

Then add a thought bubble and see if your child can help you to fill in the "unseen" pieces (what were they thinking? what were they feeling?). This is the key information that will direct your search for workable solutions.

Once you have an idea of what happened from the child's perspective (and what's important to them in that situation), you can draw out some possible alternatives for "next time", and see what the child thinks of them - would they be more comfortable if they were in charge of the classroom numbers? would circle time be easier to manage if they could sit a bit back from the group? is it just too much to manage when they see the poster of Elmo in the cloakroom? Make a solution together, respecting the child's wishes and opinions.

When there is a stand-off between a neurotypical adult and an ASD child, both sides have a problem: for neurological reasons, the ASD child is inflexible and has great difficulty shifting and changing their approach - on the other hand, the adult is capable of flexibility, change and accommodation. You don't want to "break" the child's will - they will need every ounce of mental strength they possess to meet the challenges of life. If they are stuck hard as stone, then you need to be like water: flow around the rigidity, find another way to deal with the problem, gradually shape more adaptive and socially acceptable responses. It's interesting to note that giving over to some of the child's wishes actually leads to greater flexibility overall - ASD children are more likely to accept "unchangeable" rules (like everyone has to leave the building when the fire alarm goes off), if they learn they have some power to modify less critical ones.

... and enjoy the stories ... find the humour in the chaos ... love the intellect that concludes that while causing a ruckus yourself won't get you out of "language impossible" circle time, biting the kid next to you is a fool-proof way to get to your quiet spot ... looking at events through the lens of autism is enlightening and I guarantee that the world will never look quite the same again.