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Saturday, April 23, 2011

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.

Sunday, April 17, 2011

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.

Wednesday, April 6, 2011

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.