...... 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.

..... 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!!

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!

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!

There's always a reason!

Adam always disliked the cat. When his sister's cat would enter the room, he would become obviously distressed and uncomfortable, and as quickly as possible would gingerly "shush" it out and close the door. We explored this topic through open-ended drawing sequences (where I would draw the initial picture in the comic strip story, and Adam would complete the sequence of events). We had many stories about the cat, all of which had happy endings for Adam, and less-than-happy endings for the cat. Here's one of them:

Adam's anger at the cat is clear in his drawings, although in real life his outward emotional response would look more like sad distress mixed with irritation - there is a clear contrast between his upset with the cat in the room, and his happy relaxed emotional state once the cat was out.



An alternate ending to this scenario (drawn spontaneously at home) goes even farther in showing the depth of his negative feelings towards the cat ("RIP cat!"):

Once again, interesting that in real life, Adam never hurt the cat in any way (he wouldn't even touch the cat when he was trying to get the animal out of the room) - the pictures reflect his feelings, they are symbolic of his emotional distress, but they do not indicate an intent to cause harm to the disturbing animal. We found out later that Adam was allergic to cats - so the basis for his negative feelings towards the cat was his physical discomfort (from his allergic response) whenever the cat was near.

This anecdote illustrates the importance of finding out what's behind the external behaviour - not always easy with a non-verbal or minimally verbal child.  Without knowing what's behind a particular behaviour, it's possible to unintentionally set up entirely inappropriate and "punishing" programming that forces an ASD individual into a situation that is intolerable for them. Even before we knew the exact reason for Adam's distress over the cat, his parents respected the fact that the situation was over-whelming for him, and they helped him to avoid the cat at home. If we had required Adam to spend time with the cat, the unspoken message to him would have been that it was of no consequence to anyone besides him that the cat was making him sick, and that he should "suck it up" and simply endure his physical discomfort.

One important thing that I have learned over my years of working with this population is that there's always a reason for everything that my ASD clients do, although it can often be a challenge to figure out exactly what that reason is. The value of developing drawing for communication is that it provides a channel for ASD individuals to express their feelings and reactions and opinions on situations that are causing them distress in everyday life. With this information, parents and professionals have a better chance of making a "good guess" about what underlies the often puzzling and challenging negative behaviours of the person with ASD, and once the source is known, it's much easier to find a real solution.

Seasonal Allergies and Autism

Autism and allergies go together like spring and running noses. Many ASD individuals that I have worked with have allergies of one sort or another - with some of the allergic reactions showing up in unusual forms. There are traditional reactions like itchy eyes, runny noses, congestion, rashes and asthma - but I have also met people who lose mental acuity, suffer temporary inability to process and use language, experience emotional lability (high giddiness, irritability, anger/aggression, depression), show heightened sensory reactions, and generally become a different person in their overall behaviour and interaction with the world.

I first observed this type of "seasonal disintegration" in my early work with Adam. When he was a very young boy, he was so generally disorganized (in his language, sensations and interaction with others), that any changes in behaviour and reactivity during certain seasons of the year were not noticeable. That changed as he began to learn to communicate and interact with the larger world. Suddenly, without any apparent warning, he seemed to go backwards in his skills. He was hand-flapping and toe-walking, going back and forth in front of the heater grid lost in the visual pattern, unable to use or understand words that he had been learning - he retreated entirely into his own world again. Understandably, all of the adults around him were very distressed, and we began to frantically change up his program, trying to bring back his earlier success. In a couple of months, he did seem to be back on track, and we moved on. But it kept recurring - every once in a while, he would apparently lose all of his hard-won skills.

At the same time, I was trying to unravel the more traditional allergy symptoms of my oldest son. A friend asked me to accompany her to a talk given by Dr. Doris Rapp, an allergy specialist who had expanded her traditional training to explore more unusual allergic responses and potential treatments. The talk was a revelation. She not only described the symptoms that my son had been experiencing since he was a baby, she also showed us videos of children who were showing the same types of temporary disintegration of mental and language abilities that we had been observing in Adam. I looked back through my notes, and discovered that Adam's "disintegrations" matched the same timeline as my eldest son's difficulty with congestion and breathing - and both patterns matched the population of people who are allergic to molds and mildew.

Over all the years since then, we have seasonally adjusted Adam's program each spring, and to a lesser extent in the fall. As he has gotten older, Adam himself is more aware of the days when he is suffering from his allergies. Here is a sequence of pictures that he drew this past fall on the topic, on a day that he was definitely not feeling well (this is the picture he is drawing in the photograph on the home page of our website):

As soon as the snow starts to melt, a type of mold is released and Adam begins to show signs of the seasonal change - he becomes a bit giddy, he laughs for no reason, it becomes difficult for him to follow verbal language. As the spring progresses, he has a harder time, especially on wet melting days - he becomes irritable and his sensory reactions increase - traditional allergy symptoms like running nose and congestion appear. On these days, we have found that we have to reduce the amount of verbal language we use with him, and he is less able to give us any type of verbal response. On the better days, written language is still usable, but it takes him much longer to process and formulate a response. Drawing, math and other sorts of visual activities seem to be much less affected, and during the wettest part of the spring, we go totally visual and subtract almost all language. Once the ground dries out in the sunshine, he is more himself again, although as the years have gone by, he has also shown reactivity to some other seasonal substances like certain pollens, so some parts of summer are also difficult. Winter is his most stable season, and he does the bulk of his new learning over the frozen months.

Allergies that are expressed in a behavioural way can be very difficult to diagnose. Traditional allergy testing involves a "scratch test" where substances are put below the skin, and the doctor looks to see which ones cause skin irritation. But what if the allergic response is not a skin irritation? My eldest son (who was eventually diagnosed with asthma) went through the scratch test, and nothing showed up as a skin bump - but during the airflow test that followed the scratch test (that exposed him to his allergens) he was barely able to breath. Similarly, I know of multiple ASD individuals who go through the skin testing, show no decisive bumps, but leave the allergy office spinning, flapping and melting down. So, a negative scratch test doesn't necessarily mean no allergies.

If you think that allergies are playing a possible role in your child's profile, I would highly recommend the book by Dr. Doris Rapp called "Is this your child?". She offers practical information that you can apply in the home environment to figure out what possible allergens may be giving your child difficulty. It's not an easy or quick process, but definitely worth the time and energy.



Background Noise - the annoying reality

I want to address a topic today that has a wide impact on all aspects of learning and functioning for most individuals on the autism spectrum - the debilitating effects of background noise. Here is a picture drawn by Brett (who has Asperger's Syndrome) showing his reaction to a regular classroom environment where the other students are chatting. The number in the bottom right-hand corner represents his irritation level (from Tony Attwood's emotional thermometers) - well past the "danger" level, at 100%.

For most neuro-typical people, screening out and damping down background noise is an automatic ability. Many people don't even realize how loud the background noise is until something specifically draws their attention to it. For example, have you ever attempted to audiotape a lecture at school or at a conference? From where you're sitting, the speaker's voice seems perfectly clear, and you have no doubt that the audiotape will be of high quality. Then you go home and try to listen to it - to your great surprise, all you can hear is voices of people in the audience, whispers and rustles, an annoying air conditioning fan from overhead, the sounds of footsteps - the speaker's voice is barely audible and certainly not clear enough to decipher the meaning of what he or she is saying.

Perception and processing of language is an active process involving multiple levels of your neurological system. The raw sound signal that hits your outer ear is a mass of sensory information. Your auditory system goes to work on that signal immediately, with automatic processes turning up the volume of the person you're listening to, and turning down the volume of everything else in the room. Your visual system feeds in information as well, with your eyes picking up non-verbal communication cues that fill in gaps in the auditory signal's information. Your knowledge of language allows your brain to assign meaning to indistinct words by quickly sorting through all of the possible things that might have been said (based on the flow of information). At the same time, your brain also scans the background for important information that you might want to know - like the sound of a fire alarm, or perhaps simply a question from another speaker in the audience that your ear will tune to, so that you can follow the flow of verbal interaction. All of these brain functions happen automatically, in milliseconds, so far below your conscious level of thinking that you are totally unaware of them.

Individuals with ASD may have weak or non-existent abilities to effectively process the raw auditory signal. For them, any group situation is a wash of babbling voices, overwhelming their senses and their ability to think. Often a rise in background noise can cause a behavioural outburst or melt-down. The ASD individuals that I see commonly report that the sound of human voices is more irritating than other environmental noises - it seems that words and language are harder to simply ignore (part of the brain insists on attempting to process the language, even if you don't want to).

Here is a movie created by a young friend of mine named Michael. Michael is verbal, but can have difficulty explaining in words why he does certain things - his drawings can be more revealing about the thought process behind his actions. He often draws pictures in sequences that are very much like animation "storyboards". To encourage this type of expression, I have frequently "translated" his drawings into short Flash movies (by scanning his drawings, importing them into the animation program, and making his drawn "plans" come to life). This short movie clip originated with a spontaneous drawing that Michael made of a machine he called the "blah blah sucker" - a fabulous invention that would suck the annoying words out of the background of his world. The storyboard sequence of "what happens next" was drawn during his session with me - I love the humour that he shows in the ending:

Michael is currently learning how to make animated movies himself, using a simplified version of Flash (called "Koolmoves") that has a more direct user interface than the full Flash animation program (easier to simply work on the screen, choosing tools from a toolbox, but not having to deal with putting items in layers or specifying "tweens" that control the movement pattern between key frames). My hope is that this will provide another channel of expression for him, and perhaps also lead to development of skills that will help him find employment as an adult.

So what's the moral of the story? Pay attention to the environments that ASD individuals are exposed to, especially when you're asking that person to use language, or learn something new. Understand that an ASD student may receive 0% of the verbal information given in class, so they should always have a visual version of the information to look at while the teacher is talking, and a permanent copy given to them to keep for study (don't make them take notes while you talk). Use noise-blocking headphones to subtract background noise during classroom work periods - for students who are self-conscious about standing out, try using ear-bud headphones with a personal music player, so the music can block out the sound of external voices (you may need to experiment to see what "blocking" auditory information is helpful vs. distracting). If the ASD person is participating in an activity where the background noise is high (eg. gym class, social activity like bowling), make sure key information is in a visual format, give information ahead of time (eg. as a social story), and don't expect a lot of conversation out in the hub-bub. Give the ASD student access to quiet spots to work and learn (to be used with your encouragement, but at their discretion). If you're a job coach, pay attention to background noise, when you are assessing co-op and permanent work placements for ASD clients. For family members, make sure the home environment has quiet "escape spots" so that the ASD individual has a chance to get away from the noise and unwind, decompress and recharge - make home a haven from the chaos they must constantly deal with out in the larger world.

This is another example of how important it is to have a way to look at the world through the "eyes of autism". Drawing about difficult situations reveals key information that helps those of us on the "outside" to unravel, understand and find solutions to the challenges that every-day life presents for those living on the spectrum.