R-E-S-P-E-C-T

"One of the most sincere forms of respect is actually listening to what another has to say" ~ Bryant H. McGill

We're reaching the end of another April, with lots of public discussion about autism. One message that has been coming out loud and clear in recent years is that many people on the autism spectrum are not feeling respected, or "heard" in this discussion ... that has to change.

Most of the people talking about autism are well-intentioned - we want to help people or a particular person on the spectrum to be successful, to have an easier life, to have a good future. The intentions are not the problem, but where we go from there can be (we all know what the road to H-E-double hockey sticks is paved with). Too many times, we (as therapists, educators and parents) charge ahead with ideas and programs and interventions that WE think are best, that WE think should happen, that WE think others should comply with. We don't ask, we tell.

Social mis-step in the high school hallway - drawn by Adam

The picture above was drawn by Adam in high school. It was part of untangling a larger social problem he was having in the school hallways as he would take the shortest route from point A to point B, accidentally walking between people who were having conversations. The interesting part of this picture (to me) is the facial expressions - Adam aware that he had once again violated some unwritten unspoken social rule, causing other people to be upset with him, but no idea exactly what had gone wrong or how he could fix it (a common experience for people on the autism spectrum - neurotypical humans are ridiculously intolerant of social mis-steps).

A few questions for you: Why is Adam wrong? He has no bad intent, he's just trying to get to his next class. Why is the chattering social majority in the right? Shouldn't they actually be getting to class too?

True solutions to the mis-match between widely held social customs and one individual's unusual approach come through communication. Not communication as in telling the individual how wrong they are to do things the way they do, but communication that starts with listening to the individual to find out what things looked like from their perspective, what their thought process and intent was, what was okay, what was upsetting. Followed by discussion to fill in useful information that may not have been received by the individual. And only after that whole process of information exchange, and clarification of the situation, figuring out a solution that takes into account all sides, all perspectives, with the person on the autism spectrum as an active and powerful participant.

Communication is power, but only if other people listen to and respect that communication. We need to start listening better:

click the link below if the video doesn't automatically play:

Autism: Are you listening to & respecting the communication?

Untangling the "Why?"

Probably the most common questions I've fielded over my years working with individuals on the autism spectrum all start with the same word: "Why ... ?"

Why is he doing that?
Why doesn't he look at me?
Why did she run away?
Why did he melt down?

Some autism professionals will tell you that all of the information you need to know (to answer your question) can be found by observing the person's behaviour in the environment where it occurs. I would agree that this can be a good place to start (especially if the person is non-verbal) because you get some clues about what might have gone wrong, what might have irritated, upset or overwhelmed that person. But it's just a starting point.

Many human actions and reactions are more complex than "if this, then that" - they are driven by thoughts, feelings, perception, understanding - to figure them out, you will need to find a way to ask the ASD person what the situation looked like from their perspective and you will also need to listen to, respect and act on the answer you get.

So, a few personal stories to illustrate:

First, a story that I've mentioned previously in this blog. When Adam was in elementary school, a social goal was written into his IEP (Individual Education Plan) stating that he would learn to say "hi" to other students in the hallway. From the start, Adam was clearly (and observably) upset by this program. So, I drew a picture to "ask" him what was wrong - here's what he drew:



#1 is my picture "question" to Adam - pictures #2-4 are his "answer"

Picture #3 was the most compelling for me - Adam is inside the locker, hiding from the horrible smiling greeting girl (visible in pieces through the locker vents), his distress and upset clear for anyone to see (no lack of emotion on his part). While we still didn't know "why" it was so awful for him, there was no doubt that it was, so the "greeting program" was scrapped.

Respect for his perspective. In retrospect, my guess is that he was not able to process faces and voices very well at that point in time, so he couldn't really tell who was talking to him (or why they would be). When he got to high school, he seemed to suddenly be more comfortable with other people and started to spontaneously greet them and call them by name - because they were the same height as him? because his neurology had developed to the point the he could distinguish one person's face/voice from another? because life in general was more comprehensible to him? - maybe one or all of these reasons (or something else entirely). Interesting, but not as important as listening to him and respecting the fact that a program meant to be helpful was actually not.

Second story, also from elementary school, involves a different young boy with a diagnosis of Asperger's Syndrome. We had been doing a lot of visual work to help him figure out social dynamics on the playground (an environment that was full of conflict and distress for him). Suddenly, his EA (Educational Assistant) made a worrisome observation - the boy's eyes were rolling up in his head when he was out on the playground with his peers. Some of you may have jumped to the same conclusion that we did - fearing he was starting to have seizures, we discussed a referral to the pediatric neurologist. But just before we did that paperwork, I realized we hadn't really asked him what those incidents were like from his perspective.

So, I drew him a visual "question" (although this boy was verbal, his language often failed him when he was trying to discuss more abstract or emotional topics). The question looked something like this:

I asked him to fill in the thought bubble, and this is what he wrote: "I don't want them to read my mind". Interesting. We had been having a lot of discussions about the "invisible" social cues (facial expression, tone of voice, body language) and about how eye contact was important because it let you "read" these social cues and make guesses about what another person was thinking (to help navigate a social situation more successfully). This boy was very intelligent. He decided he wasn't all that comfortable with having other people know what he was thinking, so he purposely denied them eye contact to prevent them from reading his mind. A logical and reasonable conclusion based on the information he had been given.

So, we had a new discussion about the difference between guessing and knowing, and the fact that the other kids couldn't actually read his mind. Once he felt reassured that his thoughts were still private and it was his choice which ones he wanted to make public, the eye rolling stopped immediately, and the neurology referral was no longer necessary.

Not a "why" that could be figured out in any other way than by asking the person doing the behaviour.

Third and last story. This one is about another beautiful and sensitive young boy with a diagnosis of autism, preschool age, who suddenly seemed to go backward in his toilet training. It turned out that he was fearful of the noise made by the public bathroom hand-dryers and his fear quickly extended to all toilets. A psychologist suggested to the mom that she make the boy go into the public bathroom (drag him, I guess), stand him under the dryer and repeatedly turn it on until his "avoidance" response was extinguished. The mom didn't think this sounded like a good idea, so she asked me for a second opinion. I strongly backed up her intuition that this was a very bad idea.

Observation showed that the boy was terrified by the hand dryer noise, although he couldn't articulate "why". Parental common sense says that you protect your child from fearful situations, rather than purposely exposing them to scary and overwhelming situations (because that's abusive).

Here's what we did instead. I made him a tape of sounds - ones he liked (like my piano) and ones he didn't (like the hair dryer). Then I let him be the boss of the tape machine (this was a while ago, it was a cassette tape). He controlled the on/off, the volume, which ones we played and which ones we didn't. Very interesting because he would choose to listen to the "fearful" sounds in this context, very softly to be sure, but he seemed to want to figure them out.

At the same time, we got him some "over the ear" noise protection headphones from the hardware store, and he wore these many places outside of his house to control his personal noise intake. I can still clearly picture the day he arrived at my house with a determined look on his face, headphones in hand and announced: "Sheila, get the broom ... we're setting off the fire alarm!" ... and we did ... and then he asked me to get the hairdryer so he could turn it on and off while cautiously lifting up one cup of his headphones. A very brave boy, facing his fears on his terms.

What was important here? Listening to his perspective. Giving him respect for the magnitude of his fearful response to certain sounds. Giving him control over that scary part of his everyday environment. Giving him strategies to manage the overwhelming cacophony of the larger world.

And here's the most interesting part. The "why" of his reaction, which was revealed as he grew older. This boy is a musical genius. His auditory system is so fine-tuned that he can play back multi-part harmony after hearing a musical piece only once. His auditory processing is far too exquisite for the yammering jack-hammer nature of our mundane world, and that's why he was overwhelmed by everyday noises when he was a little boy. As a grown-up, he is an accomplished musician with a rare talent. Beautiful boy indeed.

WHY is the most common question, and also the most important question.

 

Always seek out the perspective of the person on the autism spectrum. Respect the answer that you get, even if it's not convenient or the answer you hoped for. Bend the world to accommodate the ASD person, smooth the rough edges, make things comprehensible, give them control and the power to choose what they want and don't want, what they will or won't do. Respect them as independent intelligent human beings who may not want to comply with your arbitrary demands, but so what?

 

Defiance tends to lead to more interesting and unusual places than compliance anyway.

Through the Eyes of Autism - part 4

 

How many little kids are "too many little kids"? What follows is a story of autism and spring-time, love, respect, understanding, and family ties.

 

 

 

 

To understand the events of this story, you first need to know that spring is a very difficult time for Adam. He has allergies to multiple substances that appear as soon as the snow starts to melt. He suffers traditional allergic reactions (sniffling, sneezing, congestion), but also experiences multiple sensory and cognitive changes in the spring-time months. His sensory hyper-sensitivities increase, his ability to process language and new information drops, and his tolerance for dealing with the challenges of everyday life out in the world is sharply reduced.

 

For more background details, take a look at this previous blog post:

Seasonal Allergies and Autism - April 2011

Here's the story: 

A couple of weeks ago, in the middle of the spring-time melt in Ottawa, Adam's sister Laura and her boyfriend Ryan took Adam out for a "fun" afternoon. Adam loves McDonald's, and on previous outings, starting off with lunch at McD's had worked out really well .... but not that day.

I have written previously about Adam's views on "babies" - a category that includes "little kids" (see blog post: ... of babies and monsters for more details). They are too short, too loud, too active and too unpredictable for Adam to feel comfortable and safe when they're around.

They get to McDonald's ... the moment Adam entered with his sister and her boyfriend, they all realized there was a problem. The restaurant was full of little kids. They were loud, they were active, they were everywhere. Laura and Ryan did what they could - helped Adam find a table that was less chaotic, tag-teamed at the counter to order the food - and Adam did what he could, distracting himself with his iPad. They managed McDonald's, but it cost all of them energy and sanity.

Adam entered the book store (next on the "fun" afternoon agenda) with few reserves left. What had been envisioned as a long relaxed browse through one of Adam's favourite stores instead became a "dash, grab, buy & leave" mission. Laura and Ryan understood this and were totally prepared to go with Adam's altered agenda.

And then they got to the cash ...

Problem ...

 

 

Laura had forgotten her wallet, and Ryan didn't have any cash either .... Adam was on the ropes, but he held it together.

 

Thinking quickly, Ryan suggested that he could go next door to Walmart and get some cash with his bank card:

 

 

 

When Ryan and Laura were relating this story (post-trip) to Adam's parents, they described their state of high panic in these moments, knowing that Adam was feeling stressed and very close to the edge of what he could manage - they had tried to present a calm exterior, and were hopeful they had not broadcast their distress to Adam. But look at Adam's drawings, the facial expressions, the hand-waving .... he knew their emotional state, he absorbed it, dealt with it and later drew it quite accurately ....

 

Fortunately, the story has a happy ending:

 

 

Ryan was able to get some cash (and chips) at Walmart. Laura and Adam waited in the car (the chips and iPad helped Adam to stay calm) while Ryan ran back to the book store, paid for the items Adam had picked out and brought them to the car. Then they drove home and all separately collapsed.

 

Whew! Triple whew! (one for each of them)

I said at the beginning that this was a story of love, respect, understanding and family ties.

From the earliest days, when Adam was a small, non-verbal, incredibly complex, medically fragile boy, his family has always treated him with respect - seeing him as intelligent with his own view-point and perspective, following at times the faintest of clues to figure out what he needed and wanted, paying attention to his reactions to decide what was tolerable and what was not, giving him choices and power over the direction of his own life, apologizing if they accidentally took him over the edge. As a result, Adam has developed a cool confidence - confidence that he will be heard, that "his people" won't intentionally ask him to do things that are beyond his ability or desire to manage, and that they will understand and help him out when the world coughs up situations that are not reasonable.

Great story, great kid, great family.

Love (and true liking), respect and understanding are the best gifts that families can give to their ASD relatives ... when the world gets tough, it helps to know your family has your back

P.S ... oh, and humour, the story is about humour .... finding comedy in the chaos .... the picture of "there are too many little kids at McDonald's" took over an hour to draw, with Adam periodically pausing, sitting back, reconsidering and adding more and more kids to the picture .... Adam's mom and I were laughing (so hard I had tears in my eyes) and Adam was looking at us sideways and smiling and drawing more kids .... then Adam's dad came in, saw the picture and burst out laughing too .... and when that picture was done, it was scanned and immediately sent out via e-mail for Laura and Ryan to enjoy ... humour is the other key tie that binds this family together ...




note: the concept of ASD individuals having a finite amount of energy to spend daily is well-put by Karla, an ASD adult who is an advocate and a mentor for others on the spectrum (click the link for more information on her "Token Theory"):
Karla's ASD Page - Token Theory