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Friday, December 9, 2011

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 ...

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.








Sunday, October 23, 2011

Dealing with Bullies

We had a heart-breaking story in our local news this past week of a young teen taking his own life, in large part because he could no longer take the daily bullying dealt out by some of his peers. He was by all accounts a wonderful and talented boy, creative and gentle, a good friend, a cherished son ... and now he's gone, leaving a large hole in his family and his school community. It makes no sense, and although I could say it happens far too often, the reality is that even once is too often.

In the aftermath, the newspapers are full of commentary and editorials questioning the effectiveness of current anti-bullying programs, asking what could have been done differently, what can be done to prevent the next tragedy, why do bullies do what they do .... and on and on. It's a complicated problem, and there are no easy or obvious answers.

Bullying is a topic that I deal with almost daily in my work. Bullies seem to have a supernatural ability to sniff out and target the vulnerable people in their environment, and they definitely see "kick me" written on the back of students with autism. Because ASD students are not able to read non-verbal social cues very well (or at all), they will often interact with their bullies, getting drawn far into the "danger zone" before they realize that there is something wrong. They may even mistakenly believe that the bullies are friends (with the simplistic criteria of "he's talking to me"), and that can create situations where the eventual outcome can be more catastrophic, with social and physical humiliation made worse by the extra disillusionment of being betrayed by a "friend".

When the bullying victim has autism, it can be difficult to figure out exactly what happened - language skills of even the most verbal ASD person deteriorate in the presence of high negative emotion. An additional complication is that the victim can't tell you what they don't know (they missed the social cues of voice tone, facial expression and body language; pieces of information that are key to figuring out another person's "intent"). Drawing out the sequence of events can help you and the ASD student to put things together like a puzzle - use what you know from reports of observers (teachers, other students) to start things out, let the person put in the details they remember, add in information about the social cues they might have missed, help them to sort out the perspective and intent of the other people who were involved.

Here are some pictures drawn by my friend Owen a few years ago when he was struggling with the fact that some people were bullies - these are illustrations of some of the things that he considered "bully behaviour":






Anger is a natural human response to being attacked by another person - the emotion is legitimate and understandable in a bullying scenario. One of the key strategies when helping any victim deal with the aftermath of bullying is to validate their emotional response - it is outrageous what has happened to them, it's not allowed, anyone would be angry under the circumstances. Then draw a strong line between feeling the emotion (which is neither right or wrong, it just is), and the choices that a person must make about how to deal with that emotion.

Owen was very angry about being treated badly - take a look at the "emotional thermometer" (from the work of Tony Atwood) that he drew showing the level of anger he felt ("livid" which for him is 10,000 % on a scale of 1-100):

I know that some anti-bullying programs suggest that the victim be taught to yell back and use aggressive body language and voice tone to make the bully "back off"; but anger turned outward against the "tormentors" is a dangerous strategy to pursue, especially with ASD students. They lack the ability to "read" the potential danger level in a situation - is this a person who is likely to have a weapon? is the bully surrounded by a gang of friends who might join in a beating? - there are people in this world that you should definitely not confront.

Aside from these extreme scenarios, there is the very real danger of teaching the ASD student that violence and aggression is the best response to conflict. Owen is physically a big guy, and I know that the temptation to use his size to fight back and "make the bullies behave" was huge. He did have a couple of incidents where he tentatively tried it out, but he didn't like the result that he ended up being the one in trouble. We drew out the situations where he had "taken the law into his own hands", and then non-judgementally labelled all of the things that were "bully behaviour" - I could see the light bulb go on over his head as he realized that some of his behaviour had fallen into that category, and he definitely did not want to be seen as a bully himself.

But you have to do something with the anger - anger denied/ignored/pushed down turns inward, leaving a person sad and mad at the same time (often equal parts angry with themselves and others, feeling somehow responsible for the fact they've been chosen as a victim). This is a big danger in the Asperger's population. Long-term bullying (along with social and learning challenges) can leave these individuals feeling depressed and hopeless. You have to take any talk of self-harm very seriously, especially since faulty understanding of long-term consequences can reduce inner barriers to suicide - they may not understand that death is permanent (one of the young boys I worked with thought that if he killed himself he could come back the next day without his troublesome "autism problem"). Misperceptions like this add another layer of complexity to the problem.

Anger needs to be managed - one strategy that can really help to counteract anger is "imagined revenge" (I often use this myself to deal with anger and frustration). Here is one of Owen's revenge scenarios to get back at the bullies who were bugging him - he pictured himself throwing his stinky sneakers at the bullies and knocking them out with the smell (dark comedy is a good antidote to anger) - he called it "Stunk by the Shoe":


It may sound odd, but the act of drawing this out and sharing it with another person was enough to help him put his anger aside and begin to work on effective strategies to solve the daily conflict in the recess yard.

Take a look below at the large picture we finally drew that synthesized all of the pieces of the situation: Owen's distress that bullies do exist is acknowledged (the statement "the school is lying" had to do with the fact that after what he felt was a promise by teachers to stop the bullying, some bully situations still occurred), and the things he did right to handle the situation are highlighted in green (exercised self-control and didn't fight back physically, let the teacher know what had happened so she could take care of the situation).



Here's a general summary of the anti-bullying strategies I use with many of my students:

1. Tell a trusted adult what has happened - fill in the gaps in the ASD student's understanding using visual representations of the situation as an "anchor" for the discussion (draw it out)

2. Label the emotions and validate the student's reaction to the bullying - where possible, help the student to understand the perspective and motivations of others involved in the situation - also, help them to see the "danger signals" that they might have missed, so that they can exit a similar situation in the future before it gets out of hand

3. deal with the anger - talk it out, draw it out, use the strategy of "imagined revenge" (think it, don't do it) - try dark comedy to directly combat the inner feelings of anger - be alert to "anger turned inward" and any mention of self-harm or suicide

4. use "positive assertiveness" rather than encouraging aggressive language/behaviour in response to the bully - making "I" statements in a calm/neutral tone ("I don't like that", "I feel bad when you do/say that", "I want you to leave me alone"), then making a quick exit to a safe spot is a good general strategy

Which brings me to the last and possibly most important defense that ASD individuals (or any of us) have against the bullies of the world: community ... a buffer zone of friends, family, trusted professionals and authority figures who have your back. A person standing alone on a playground is the perfect target for a bully - a person standing with 5 friends is not such easy pickings. We need to purposely build groups of kind peers who will help to safeguard ASD students from those who might hurt them (see "peer training" on our website): they can help the student to catch the social cues they missed ("he's not your friend, he said that in a mean way"), they can help the student to get away when a situation turns dangerous ("we've gotta run now!"), they can go and get help from an adult, and they can reassure the student that not everyone in the world is mean.

It's complicated, but if we all work together, I think we can give those bullies the old "stinky shoe" ...

Saturday, October 22, 2011

Our website is back online!!!

A few weeks ago, our website domain was hijacked and our site suddenly went offline. Our webmaster, Casey, spent hours on the phone trying to sort out what had happened - after 3 weeks, the string of events was still "clear as mud", and we resigned ourselves to the fact that our domain name had been taken from us by dishonest means, and that it was unlikely we would ever get it back.

This was a big test of a key decision I made a few years ago, when negativity (caused by the multiple negative and stressful situations that are all too common when you work in the field of autism) was literally breaking down my spirit and my physical health and making it impossible for me to do my job. At that point, I made a conscious decision to step away from the arguments over philosophy and intervention, to subtract myself from toxic work environments and to purposely approach my work-life with positive energy (more like the optimistic young therapist I used to be). The whole idea for freely sharing information through a non-profit website came out of this period of time, and I found myself re-energized and able to jump back in ..... and then somebody stole my website.

I won't lie, I had a few bad days, wondering about the fairness of the world and the ethics of the people in it. I have to thank my friends and family for helping me to bump out of this angry and negative mindset: my husband who is sympathetic but also action-oriented (big guy for believing in multiple solutions to any given problem), my boys (and my lovely daughter-in-law) who use humour to highlight the absurdity of the mind-frames I get stuck in, my sister who was the first one to see the problem (and wins the prize for voluntary viewing of my blog and site!), and my yoga class who listened to my gripes but discouraged my more vengeful thoughts (breathe in, breathe out). Wow, this is starting to sound like an award speech. The point being that my buffer of friends and family were my support and shield when the outside world was less than kind. (more on this theme in my next post, which is on the complex topic of "bullying")

So, I chose a positive mindset again, and while I can't honestly say that all my thoughts of vengeance against the "wrong-doers" were completely gone, I relegated the more drastic (and darkly funny) ones to "stay in my thought bubble" (a piece of advice I commonly give to my ASD clients), while holding the legal ones in my back pocket. Casey and I made a new plan that involved walking away from the controversy and starting over with a new domain name - not my first choice, not what I considered to be the optimal choice, but definitely an available choice. It's amazing how freeing it can be to just choose to disengage from the negativity and set your head in a different direction.

.... and then, I don't know if it was the positive energy generated by that last "ohm" spoken by my yoga class, or maybe a cosmic reward for "getting the life lesson", or just one of those random events that sometimes fall out in your favour .... but, out of the blue Casey got a call that said we had the domain name back and could re-register and put our website back up .... so we crossed our fingers, held our breath and did just that ..... TA DA!!

drawing by Adam

We don't know how we lost it, we don't know how we got it back, but we're back online and we're not questioning our good fortune. Thanks to everyone (named and un-named) who lent a sympathetic shoulder ... we'll return the favour when you need it (because that's what friends are for).

... come visit us at www.autismandtheartofcommunication.com  and take a look .... Sheila B

PS - In honour of the re-launch, we have added a whole new section called "Back to School" (in the academics section, look for the school bus icon) with suggestions for teachers and parents to help make the school experience more successful for ASD students (meant to be "user friendly" - read them one day & try them the next). Please share the website address with teachers and other professionals that you think might find it helpful. We look forward to hearing your feedback!


Sunday, October 16, 2011

Teaching art to students with autism

An art teacher posted a request to our facebook wall, asking for input from others who are teaching art to students with autism. I'll start the discussion with some of the methods I have used over the years and found to be effective in one-to-one and group teaching situations.

One of the major challenges for all teachers of students with autism (regardless of the subject matter) is getting past the severe communication deficits that are typical of this diagnosis. In a usual classroom setting, the teacher can stand at the front of the class, give information and directions, and have a reasonable expectation that their students will understand what's been presented. Students with autism will generally learn poorly or not at all under these conditions - the verbal information goes by too quickly and is often drowned in a sea of background noise - even when the words are heard clearly, their meaning may not be understood (because of gaps in language knowledge).

If you want to teach a person with autism effectively, you would do better to "show" more than you "tell". Rather than filling the air with verbal explanations, put information into visual format and then model what you would like the student to do. If you are chatty by nature, damp it down - speak in single words and short phrases backed up by your visual pictures and modeling - think of your words as stones dropping one by one into a pond, with lovely silence in the in-between time as the ripples go out and the ASD student can think about what you said.

Art is a perfect subject for this type of approach - you are teaching visual and hand-eye coordination skills that are only imperfectly described by verbal language in the first place. A book that I would highly recommend is Mona Brookes' "Drawing with Children" (and the follow-up book "Drawing for Older Children & Teens"). In the initial chapters of the "Drawing with Children" book, Mona describes a method for teaching classes of young children to draw what they see - she draws a picture step-by-step, describing what she is drawing, and the children draw each line and shape as she does. I have used a variation of this "follow me" style of art teaching for many ASD students of varying levels. One major difference, compared to the method described in the book, involves the language level - talk less than is suggested, and use words that name and describe the pieces of what you are drawing (rather than the shapes and angles). The other major difference is that you will get better results, and a calmer happier student, if you (or another adult model) sit side-by-side with the ASD student, modeling the drawing or painting or sculpting, letting them control the pace of incoming information (don't start modeling a new step until they have completed the step before).

Another type of resource I would recommend for art teaching are the books that use pictures and words to give step-by-step visual instructions for art projects. Ed Emberley (children's author and illustrator) is terrific at this, and he has published many books that lay out visual stepwise instructions for how to draw almost anything. The first time that Adam learned how to draw something from someone other than me, was sitting side-by-side in his school classroom with an adult volunteer (who was an artist herself), drawing animals in a "follow me" mode, using an Ed Emberley "learn to draw" book as a reference for both of them.

Here is an example of an early picture that Adam drew using an Ed Emberley book on drawing animals for reference, with me sitting beside him providing a step-by-step model in the "follow me" format:

note: using this method, Adam drew a much more detailed picture than his usual style
- gradually, his own drawing style matured to match the skills he was learning in this context -

You can find out more about Ed Emberley (including an extensive book list) at his website: www.edemberley.com .

Other books that explore different art media and techniques, and are great for visual instructions, include "Fun with Modeling Clay" by Barbara Reid (children's illustrator famous for her plasticine sculpted pictures), "How to Make Pop-Ups" by Joan Irvine (paper sculpting) and the many books in the Klutz publishing line that show kids how to do various craft techniques. In addition, you can now find some good visual instructions at various sites online (love that Google search!), and I would also recommend searching YouTube for "how-to" videos on various art/craft, cooking and sewing skills and projects. If you are ambitious, you can make your own customized visual instructions (picture/written or video) - with advances in digital cameras, this is much easier now than it was even a few years ago.

A few last notes for those of you teaching multiple students at one time:

If you are teaching a class of ASD students, make sure the number of students is small, so that you do not get ahead of the slowest person (nothing stresses out a person with ASD like time pressure). Have visual instructions at each student's spot, and make sure that your model is close enough that all students can see the details (be prepared to re-model trickier or more intricate steps). You may want to have extra adults beside students who are more severely involved (and more likely to get stressed by missing information given from a distance). If you have an ASD student integrated into a regular art class, you can use a similar method (with an adult sitting beside the ASD student and modeling the art project using a step-by-step visual method) - this will be most effective if you and the adult support person can get together before each class to ensure that they understand how to do the art project themselves (nothing more panic-producing for an adult than finding out "in the moment" that they don't know how to do the thing they are supposed to be teaching).

I welcome input on this topic from teachers of art (and other subjects) - please join the discussion and share methods that you have "field tested" and found to be useful.

Look forward to hearing from you!

Sheila B


Saturday, October 1, 2011

No, that is not our website

Those of you who may have tried to visit our website over the past week will have noticed that the site looks very different - that's because it's not us. Due to technical problems beyond our control, the website is temporarily offline. We do not endorse any of the information found at our address at the moment. Our webmaster is sorting through the difficulties, and we will let you know when the real site is back up and running.

Thanks for your patience ........ Sheila Bell

Saturday, September 24, 2011

When boys and girls become women and men

Last week during our session, Adam was suffering terribly from his allergies. He was almost non-verbal, and his sensory reactions had him jumping out of his skin. I asked him a "visual" question (drawing myself looking concerned with a speech bubble that said "Adam, how are you feeling today?" and leaving a space for him to add himself into the picture). And then he surprised me. For the first time, he drew himself as an adult man (beard and all):

He's been taller than all of us, and sporting varying degrees of facial hair growth for quite a few years now, but up until now, he has always drawn himself as a boy of varying height ... if the situation pictured was one where he was confused or in distress or in trouble, he would draw himself as both younger and smaller than the adults.

Here is an example - a picture that Adam drew (to help him sort out his distress over the fact that he got in trouble for fiddling around with scissors in class) when he was 17 years old and well over six feet tall. The other person in the picture is a female staff person who in real life was at least a foot shorter than Adam ... but not according to Adam's inner perception ... she was the adult who made the rules, and he was the small boy who broke a rule he didn't know existed:


Last week's self-portrait shows us that Adam is finally starting to view himself as an adult, a significant advance ... a change that crystallized a topic that I've been thinking a lot about lately. What kind of adult life waits for the growing population of ASD individuals moving past their 21st birthday? If they have not already dropped out of traditional school, they reach the end of that stage of education ... and graduate to ... ??

... and that's the problem. Over 20 years ago, I started into my work with the ASD population by working with adolescents and young adults in a high school program that aimed to take students from school to work. We did communication and social skills training on the job sites, and educational assistants doubled as job coaches with back-up from teachers and other professionals. A number of students ended up with job placements that lasted past graduation. At that time I was an optimistic young speech pathologist, knowing that this was a great new program, and believing it would only expand and become more accessible and effective over the years to come ... I thought that in 10 years time (and certainly in 20), most young adults on the spectrum would have school to job support and job coaching that would stretch into the years following graduation ... I was wrong. Political changes and cut-backs in the intervening years paired with ever-increasing numbers of identified ASD students have led to available resources being totally over-whelmed, with new resources few and far between. Good-hearted and good-intentioned professionals continue to try to fill this gap, but it's a bit like trying to catch a waterfall in a teacup.

A friend within the local autism community (a mom of a young adult with AS) sent me the link for this story that appeared in the New York Times this past weekend:

Youths with autism prepare for a place in an adult world

The story follows a young man with autism who is reaching the end of his time in a school program, similar to the one I worked in years ago, that aims to prepare teens with ASD for adult life (including employment and independence). This young man has artistic talents, but it's unclear whether family and program staff will be able to help him find a job (that he can keep) where he can use his talent and make a living.

The challenges faced by Justin (the young adult in the NY Times article) are all too familiar to professionals who work with the young adult (and older adult) ASD population and their families. Young adults with ASD don't disappear when they walk out of the school doors at age 21. They are smart people who need to keep learning, who need to have an outlet for their talents and skills, who need the opportunity to live as independently as they are able; and the families need help to have this happen.

In my opinion, the boundaries of the problem stretch beyond what can be offered by public services alone. I think effective solutions will require a creative re-thinking of how individual people and businesses can open their doors and integrate these very talented and unusual people into the fabric of society ... and how to make that happen is what I've been thinking about this fall ... the young optimistic therapist still lives inside me, and I think it can be done ... stay tuned, and I'll let you know if I get any good ideas.

Wednesday, September 7, 2011

..... some social humour from one of my engineering brothers

Well, I make my family read my blog (I'm not too proud to use the social pressure of familial obligation to increase my readership). In response to yesterday's post on socializing and the engineering slant on life, one of my brothers sent me the link to this youtube video ... an informational description of the construction of a pop song .... he found it funny, I found it funny, it may or may not tickle your funny bone, but here's the link so you can see (hope this works):

daVinci's Notebook - title of the song

http://www.youtube.com/watch?v=734wnHnnNR4

Tuesday, September 6, 2011

To socialize or not to socialize .... that is the question

Many of the people who choose to work in the "helping" and teaching professions are very out-going, chatty and sociable people. Usually this works to everyone's advantage as most jobs in these fields involve friendly interactions and discussions with many different people over the space of a work-day. Over time, "folk wisdom" in the therapy/teaching sphere has formed an image of what "normal" social behaviour looks like ... and it looks a lot like the chatty interactive social style of the extroverted people who dominate these professions. Programs that are set up to teach social skills often have the goal that participants will eventually match this "norm".

But maybe that's not what's normal for everyone. If you're working with people on the autism spectrum, perhaps a better "target" social style is embodied by an engineer or a scientist or a math major. I know (and like) many engineers ... my dad, my brothers, my brother-in-law, my uncle, not to mention all the engineering and computer guys I meet in the course of a work day ... and while engineer stereotypes are over-simplifications, they also hold a fair chunk of "real-world" truth. The best thing about engineering humour (of the printable kind) is that the engineers enjoy it as much as anyone (although their comment is more likely to be "well of course, that makes sense"). Here is a comment on engineers and social interaction that I think fits this discussion:

"Engineers have different objectives when it comes to social interaction. "Normal" people expect to accomplish several unrealistic things from social interaction: stimulating and thought-provoking conversation, important social contacts, a feeling of connectedness with other humans. In contrast to "normal" people, engineers have rational objectives for social interactions: get it over with as soon as possible, avoid getting invited to something unpleasant, demonstrate mental superiority and mastery of all subjects."  www.engineeringhumor.com
 Does this sound like anyone you know?

a quick sketch I made for one of my teen clients
to explain the term "breaking the ice"

 
The teen-age years are excruciating for many of us ... for those who are struggling with the social side of life, they can become unbearable. Many teens with a diagnosis of AS become weary of their lack of social success and retreat to their rooms, pessimistic about their chances of having a rewarding and enjoyable social interaction, no longer willing to risk public social rejection. They don't want to be labeled, they don't want to go to a "special" group, they don't want to have their social errors highlighted and corrected in public ... they just want to have a friend to spend some time with when they're in the mood for company.

I have run a variety of social skills groups for the ASD population over the last 20+ years. In 2003, we started the Typical Teens groups for adolescents with a diagnosis of Asperger's Syndrome.


for more specific information about this program
(clickable link on the homepage)

The cornerstone of this group model is the inclusion of trained peer mentors - in my experience, it is almost impossible to create an authentic social situation if no one in the group (besides the person running it) has intact social skills. Peers act as models of "usual" teen-aged behaviour, and create a safe "social bubble" where the AS teens can take social risks without risking public embarrassment. Our peer mentors are chosen to model a mixture of social styles - relaxed jokers, quieter bookish kids, sporty active guys, eccentric intellectuals, social butterflies. The facilitators work at arms-length, helping each person to find their social match(es). It is always interesting to watch the transformation of the AS teens over the 8 week sessions - as their (reasonable) social anxiety is counter-acted by new positive social experiences, they start to relax, to smile and laugh and obviously enjoy the company of their peers.

Which is, of course, the point of a social skills group - to find your own personal brand of "social mojo" - to actually begin to enjoy social interaction and be convinced of the benefits. The group therapy model is well suited to supported experiential learning - "hands on" practice of social skills in a "real world" setting with back-up. Feedback from past group participants (and their families) tells us that many of the social changes we see in this model carry over into their daily lives after the group is done.

(In my professional experience, de-constructing social errors in painful detail to pin-point the exact moment of social disintegration is more of a private activity (one ASD person, one support person) - I doubt than many of us would happily agree to share our most excruciating social failures with "the group".)

Of all of the evaluations we've had from participants over the years, the following comments by an AS teen participant are my favourite endorsement of the Typical Teens model:
 "Well, being with other people isn't as bad, isn't as boring, and isn't as a waste of time as it may seem ... it's still pretty interesting in a different way ... and it was enjoyable. I would recommend these groups because it would help develop other people's social skills and their understanding that company is a good thing and that being with others is quite worthwhile"
.... an engineer's perspective if I ever heard one ... but a happy engineer who is convinced that there is a point to the exercise ...

Tuesday, August 23, 2011

Anxiety and panic in a world of uncertain events

Everyone feels anxious sometimes, but not all of us get the heart-stopping "grab you around the throat" can't breathe can't think panic state that can be a daily event for people with autism. One of the characteristics that I share with people on the spectrum is a tendency towards stress and anxiety whenever events are not predictable - over the years I have developed many strategies to deal with this part of my personality, to the point that only those closest to me have any real idea of my great discomfort with chaos and uncertainty (my husband likes to point out that future events can actually never be predicted with accuracy, but I don't really like to think about that).

This past weekend, I had an experience that triggered a sudden and intense "all the wheels fall off" level of panic that took me by surprise. We were camping and my family had spent the day kayaking and hiking. When the storm clouds boiled up behind us and the thunder started, we were still several lakes away from our campsite, with no obvious good choices for safe harbour to wait out the storm ...




... another roll of thunder and a glance over my shoulder, and the switch flicked ... instantaneously panic ruled while the thinking part of my brain fled to parts unknown. According to my husband (who has a gift for images), my eyes rolled up into my head like Black Beauty and I started paddling like a windmill taking us in no particular direction. A dying whisper of logic told me I wasn't making us safer, but I couldn't stop.

In retrospect, I can tell you what happened inside my head. Because we have lost one of our children, my greatest fear is that something bad will happen to one of my other children or their spouses/partners or my husband. At that moment, everyone near and dear to me was bobbing about in small boats on an electrical conductor (water) with lightning on the horizon and winds rising (the thunderstorms have been spectacular this summer)  ... no available solutions, no way to know if there was going to be a good ending ... and so: panic, can't think, can't breathe.

Most people can recall a situation that caused them this level of anxiety and panic - the memories stand out because they are unusual. But for people with ASD, this state is unfortunately too common. Many behavioural and emotional outbursts are rooted in the anxiety caused by events moving swiftly and unpredictably, with catastrophic endings always a very real possibility. Difficulty with "reading" other people, with understanding verbal language, with being able to express thoughts/feelings all combine to make usual stress reduction strategies ineffective ("talk it through with a trusted friend" doesn't really work out) - even highly verbal individuals find that their language and logic skills desert them in this state. The more "unknowns" in any given situation, the higher the stress/anxiety and the greater the possibility of an unthinking panicked response.

drawing by Adam

Drawing is a strategy that works well to reduce panic and anxiety in the daily life of ASD individuals - sitting down with a big piece of paper after a blow-out, drawing out the various pieces of what happened and connecting them together, filling in the "missing" pieces (thoughts and perspectives of others, what people meant by the words that they said, facial expressions and voice tone), hearing the perspective and thoughts of the person with ASD (what did they think was happening? what did they fear?). Then using this information to make a plan for "next time" - identifying "choice points" (where the string of events could have been changed), defining the available choices, making a plan A & B & C, identifying "safety people" (who will know what to do to help) - basically, you're putting together concrete visual information to fill in as many "unknowns" as possible, to help the person do the thinking ahead of time so that when the panic hits there is a logical workable plan to access.

These strategies are not 100%, but they do work to bring the frequency of panicked situations down to a more usual level. There are always going to be times when you're stuck in a small boat in the middle of a lake in a thunderstorm, but it won't be every day (or multiple times each day) - and if you've built up your "street cred" by regularly helping the ASD person to find workable solutions to seemingly unsolvable daily problems, they may trust you in that unusual situation when you ask them to just put their heads down and paddle for the beach.

... which is what we ended up doing (head down, around the point and the around the next one, storm veered left and we veered right) ... and thanks to my husband for talking me back from the edge!

Monday, August 8, 2011

The right to be different

My mom tells me that I started out as a very quiet child -  so quiet that had I been born in this era, rather than in the 1950's, I would no doubt have been in a specialist's office with a diagnosis pending by the age of 2. I talked late - barely babbled, didn't try out words, was a silent presence in the room until the age of 2 and a half when I suddenly started to speak in sentences (according to my mom, my first words were "I want a cheese sandwich please" during lunch at a neighbour's house).

I was an eccentric little person, always thinking much more than I spoke, and expressing odd thoughts when I did speak - when I was 5, I "cracked the code" of reading one day and could suddenly read everything I looked at (I still remember how cool this was - one of the great joyful days of my life). I grew up in the country, and loved the freedom I had to disappear into the ravine, climb a tree and let my thoughts run for hours without interference from other people's questions and demands (as long as we showed up for meals, it was all good). When I went to school, people did start to categorize and test, but my parents kept me unaware of those discussions - I was talking at that point, and I could "do" school, so I got to be "gifted", a label that allowed me to be as different as I wanted and no-one would tell me I had to conform.

This is not exactly fair, is it? If my diagnosis had been "autism" instead, I would not have been given the freedom to develop and learn in the way that best suits my brain "flavour" - not allowed to choose when to socialize and when to retreat from the world of people, not allowed the quiet and solitude I needed to think my thoughts through to the end. People would have assumed that I was thinking nothing when I stared off into space for long periods of time, not responding to the words of other people (by the way, I still do this, to the great hilarity of my husband and sons). My strong (obsessive?) interests in favourite topics or activities, my "stair step" development of skills like talking and reading, my high stress in situations with too many unknowns would all be taken as further indicators of my oddity. Well-meaning therapists would set out to "fix" me. I would hate that.

All good therapy starts with respect for and knowledge of the individual who is the "target" of that therapy. People with autism think a lot more than they speak. Their optimal learning style may be nothing like a "usual" or "average" learning style, but what's so great about "average"? We put too much stock into "developmental norms", which are nothing more than population averages - no real person looks like a statistical "norm" - when we average out development, we lose all the interesting bits.

drawn by Adam, age 17


When we focus on bringing people with autism back to the "norm", we can unintentionally give them the message that who they are and what they're thinking and saying is not acceptable. Communication provides a bridge between the "average" world and the slightly more "unusual" world of autism - if parents and teachers are willing to hear what is really said and teach to the differences, the result can be learning on both sides of the equation. Different doesn't mean "wrong", it just means "different" .... and different can be pretty cool.

Monday, July 4, 2011

...... it's all about stories

My grandfather had a gift for telling stories. My favourite beginning to any conversation with Grandpa was "Sheila, did I ever tell you about .... ", followed by stories about people and events, familiar and unfamiliar, all told with wit and uncanny perception. Grandpa was a keen observer of life, and he listened to the stories of other people as much and more than he told his own. When I was very young, he told me that it was a mistake to fall in love with your own "smart-ness"- his exact words as I recall were: "Sheila, every person you meet knows at least one thing that you don't, and if you don't listen, you'll never find it out".

The longer I work with people with communication disorders of all sorts, including autism, the more I realize that there is no single skill more important than narrative or story-telling. Communication is all about narratives. Think about today - how many stories have you listened to and how many have you told? ... how was your weekend? what did you do at school? did you see what was on the news? let me tell you about what happened this morning ....

We taught Adam to tell stories in a comic-strip format. When Adam was 7, I started drawing out simple interactions and conversations for him using sequences of comic "cells". When he was 10 (and able to draw), I set up open-ended "What next?" drawings where I drew the first action, and he drew the reaction or next action. The first time we tried this, he simply copied my drawing. So I modelled the reaction in a silly dramatic Saturday morning cartoon way, falling off my chair over and over until he said "Cut that out!" - but he got it, and he drew a sequential picture.


When Adam was 11, he drew his first longer story after seeing the movie "The Emperor's New Groove" one time. I drew a scene from the movie, and then he drew the sequence of events that followed - he had taken in the whole story, and was able to tell it back to us.

A few months later, he drew his first original story about a man and his hat - it made sense, it was funny, and it showed the man's clear emotional reactions to the things that were happening:


This story was only the first of many, all demonstrating humour, imagination, understanding of cause and effect, and human emotional reactions - things that many people have assumed are not intellectually possible for individuals severely affected by autism. Drawing opens up a channel that allows a person with low verbal skills to communicate more complex thoughts and concepts - to share their true wit and intellect, their opinions, their hopes and their dreams.

I recommend that you take my grandfather's advice and listen to the story to learn the thing you did not know before ... then let that information change the way you see and interact with people with autism.

Saturday, June 18, 2011

..... Don't forget the Dads

It was my dad who set me on this path towards treating autism, although I'm sure he was unaware of it at the time. My dad is an engineer, and our minds work in similar ways, with both of us at times a little closer to the spectrum than not. We got memos when we were kids (both written and spoken), not long explanations. My dad saw, more than most, my basic discomfort with the world of people. He shielded me, but also required me to gain the skills I would need to deal with others - when he forced me to learn to use the phone as a teenager, I thought he was so mean, standing firm against my tears - he knew better than I did what was necessary (and I've come to realize he doesn't like the phone much either).

My dad had to travel a lot for work when we were young, and I treasured the times we spent together when he was home. One day after lunch, he started doodling on the back of an old envelope, then began to tell me a story as he drew - little bug people, strange mechanical contraptions, silly happenings - a wonderful unexpected sharing between like minds. The seed of that moment stayed with me, and gave me the idea of intentionally having visual conversations with my young clients who also shared that visual thinking "flavour".  A great idea that has grown into many useful techniques - thanks Dad!

Dads add a whole different dimension to parenting. They often have a well-developed sense of fun, of the absurd. I was always impressed with how my husband, John, was able to make up endless silly games using whatever was at hand - a cardboard box, a ball, a piece of string. He could improvise stories and contests on the spot, easily connecting to his own "inner child", following the kids into their world and intuitively knowing what was fun. It's a gift. Often, when I'm at a loss in therapy for how to truly catch a child's interest, I channel my "inner John" to find the game in the mundane.

a picture of Adam and his Dad - drawn when Adam was 11 yrs old

Adam's dad, Casey, has always been a strong support for his son. When Adam was young, the only person he was able to respond to was his mom - later, he added me to the very small group of people that he "noticed". During these early years, Casey tirelessly advocated for his son, running interference with schools and other government agencies, talking to legislators, searching out therapists - all the while, Adam seemed unable to "see" him. This must have been difficult for Casey, but he handled the situation with humour, never complained and never stopped trying to reach his son.

When Adam started to draw, he began to notice more about the outside world - and he finally noticed his dad. He and his dad began to do things together - it turns out that they have a lot in common (including facial expressions) - and Adam discovered how much he enjoyed his dad's company.

by Adam, age 11

Over the years, Adam has come to expect that his dad will share in certain things - trips to haunted Halloween theme parks and Disney World, movies and hiking and bike trips - and he also knows that if he has a technical problem with his computer or video player, dad's his guy.

by Adam, age 11

The bond between a father and a child is unique and important. You guys are indispensable and we love you ..... Happy Father's Day!!

Wednesday, June 1, 2011

Family .... for better or worse

My oldest son got married last week, and I find my mind constantly circling back to the topic of family. Complicated, wonderful, infuriating, steadfast - they are the ones who can get under your skin faster than anyone, they know all your buttons and might not be shy about pushing them - they are also the ones who are bound to you, for better or worse, through all the ups and downs that life brings.

There's nothing like the news of a serious diagnosis like autism to bring out all of the best and worst of family dynamics. It can be surprising (and perhaps disillusioning) who stands fast and who runs for the hills. But there are also unexpected twists in who can come back after a disappointing start - life is long, and people may need second (and third and fourth) chances to show that they can be there for you.

Take a look at this picture, drawn by Kevin, a young man with autism:



It's a picture of him with his older brother Raymond, playing in the pool (Kevin is drawn in orange, Raymond in green - Kevin has chosen a unique colour for each important person in his life). I have known both Kevin and Raymond since they were young boys, and have had the privilege of seeing them grow up and watching their bond as brothers deepen as the years have gone by. Kevin is a complicated person - intelligent, severely compromised in conventional communication, with multiple medical/allergy issues that have caused many crises over time. Raymond is an intelligent guy with a great sense of humour, and an ability to roll with the unpredictable highs and lows of daily life in an ASD household. His love for his brother is obvious in all that he does, and Kevin adores him. In our language work, the main characters are always Kevin and Raymond (and Mr. Bean and Teddy) and mom and dad. Wonderful pictures of the whole family adventuring, vacationing, relaxing and playing - this is Kevin's world, and this is what holds him together during difficult times when his own mind and body conspire against him to make life unmanageable.

If there is one factor that I have found to be predictive of long-term success, it's family support. From the point of view of a therapist/interventionist, anything that strengthens the family unit is a good thing, and anything that weakens or destabilizes the family is not. The period of time that includes diagnosis and early intervention can be panic-filled and mind-numbing. If the diagnosis of ASD is correct (and there are other diagnoses that can look like ASD in young children, but turn out to be a different type of communication or developmental difference), then it's a distance run, not a sprint. You will do what you can in the years before age 5, and then you will do what's needed in the school years, and then you will do what's next in the adult years - autism is a basic difference in the way that a person's mind works, and that difference requires specialized teaching over the person's lifetime.

In the rush and panic that often surrounds early intervention, family relationships can inadvertently be left in the dust. This is not okay - if it's happening in your family, now would be the time to turn it around. What can you do? From my experience over years of working closely with multiple families with ASD, I would recommend these things:

Spend time with your spouse: Talk your way through the issues and come to a consensus on how you as a family are going to deal with the situation, lean on other family members to give you time with each other away from the stresses of daily life with young autism, invest money in a quality couples therapist to help you mediate your discussions and come up with workable solutions.

Spend time with your other children: This is a frightening time for them, where mom and dad are stressed and distressed, and daily crises with the young ASD child can easily push their needs and concerns to the sidelines. That would be one thing if you were dealing with an illness that was a week or month in duration, but it's not a productive strategy for the long term. The siblings of a person with autism are the next generation of "family", and can be the best long-term support for their brother/sister - they need your time, and you need your time with them. "Sibling groups" can give your kids a place to talk about issues with other kids who are dealing with similar issues in their lives.

Resist the temptation to break the family bank: You will need all of your resources, including financial, to deal with a long-term difference in your family life. Call on support from your larger family, tell them what you need, give them a chance to step up to the plate. The extra stress caused by unmanageable debt can be the breaking point for a family, and the family is one resource that the person with ASD can't do without.

Choose your therapists and educators carefully: A good therapist will be respectful of your family and your child, and will offer you advice that takes into account the particular profile of who you are as a unit. A good "litmus test" for advice is whether it builds you up as a family or breaks you down. The best intervention is tailored to the unique constellation of a family, it builds on the strengths and minimizes the weak points - one size does not fit all.

Family ... the most precious resource that we too often take for granted ... they weave around us, they hold us up, they drive us crazy, they're in it for the long haul ... a toast to all of us, and we'll last another day!



Sunday, May 8, 2011

Let's hear it for the moms!

It's mother's day, and I've already talked to my three boys and my soon-to-be daughter-in-law. It's a day that always takes me back to the kaleidoscope of experiences that make up my own personal experience of "mom-ness". Being a mom is much more than the pastel water-colour sentiments that are usually expressed on mother's day cards. For all of us who have faced serious crises with our children, the soft focus dreamy smiles don't exactly encompass all that being a mom means.

The reason that I initially chose to go into the field of autism was that it was the only diagnosis that seemed serious enough to be worth my professional time after I lost my young daughter to cancer. My own experiences of being a mom include days of crisis and uncertainty, paralyzing fear for the future of my child, enduring the judgement of well-meaning professionals about how I should be handling events that were well out of the realm of rationality (always interesting to read about yourself in the hospital notes), having people turn and walk another direction because they don't know what to say to a person "in my situation", reaching the point that I would not have imagined I could live beyond and yet surprisingly (shockingly) finding myself still breathing and required to do my duties the next day. But my experiences also include humour and laughter in the middle of dark times, not taking the joy of ordinary days for granted, reinventing and rebuilding a family life that works despite circumstances we would not have chosen. Great joy and great sorrow mixed.

a picture of Adam and his mom, drawn by Adam

The moms of children with ASD deserve a special "shout out" on Mother's Day. These are moms who know crisis and uncertainty and fear and judgement. They are moms who don't get to have a day off, or even any certainty about how many years the full-body-contact mom duty will last. They are the moms who are seen by their children as a shield in times of trouble, the person who will help them make sense of the nonsensical, the one who will absorb their distress, forgive them their outbursts and make the world safe. They are the ones who run interference when the child is publicly and spectacularly melting down in the grocery store (and bystanders are calling in the police, the CAS, the coast guard). These are moms who historically have been blamed for their children's troubles (R.I.P. refrigerator mother theory!) at the same time as they've been asked to "just make those children behave".

They are mother, teacher, advocate, counsellor, sheriff, ... with this job description, you couldn't offer a high enough salary to retain quality personnel ... but every day these moms show up.

They are also the ones who find the comedy in the chaos. The ones who take the child to the school board superintendent's office and let him take every piece of paper off the walls and the desk as they question the decision to remove EA support from the classroom. The ones who get the shy eye gaze, the rare kiss, the "backing into your body" contact that is as close as that small person can come to a hug.

Moms, you need to know that all this time, all this love, all this heartache is not lost on your children. They see it, they know it, even if they can't always tell you in a conventional way. Here's a little note from a friend of mine named Owen, drawn and written when he was in elementary school, that gives a little flavour of how important his mom is to him:




HAPPY MOTHER'S DAY!