Estée KlarThe Joy of Autism

One of the most talked about issues in autism is the issue of verbal communication or “functional” speech. That is, speech that is reciprocal, social, conversational. For Adam, there have been major challenges in this area and he has had to use augmentative forms in order to communicate many things, yet for the person who understands his communication, he is communicating all the time. I do not find it too difficult to understand and the one shortcoming I may have is the tendency to feel frustrated when he is — when he cannot get a more complex message across.

Adam turned eight this year and much of this is beginning to change. Adam began to talk in sentences, began to show me things and started to become “the teacher,” in the sense that he would test me on the things he wanted to talk about in books. He learned certain concepts such as what something was NOT as opposed to what it was, among other concepts.

There are a couple of things I want to write with respect to progress in communication ability, quite unscientifically, in this post, for I have not yet found some good citations to support my theories about autism and development. So take it for what it’s worth and perhaps you may see some more of my posts deal with this — with citations.

I’ve been reading how to teach philosophy to children through children’s books: Big Ideas for Little Kids: Teaching Philosophy Through Children’s Literature, by Thomas E. Wartenberg. When we refer to teaching “critical thinking” to autistic children, it usually has to deal with teaching the more functional types like putting puzzles together or teaching Feature, Function and Class — for those familiar you know what I mean. These are the basic skills we believe are absent in autistic children because their very expression is difficult to manifest — be it for attentional reasons or motor planning issues, or both.

We do not address for the “profoundly autistic,” “severely autistic” or any autistic child, for that matter, often enough, how to read books, how to question and how to think abstractly because we have decided that autistic people learn literally. While this may be in part true, we miss an opportunity to help along the critical aspects to being human — the ability to question. I’ve read many a time how we wish to teach some flexibility in thinking in autism. To me, teaching through books and by taking a lead in creative ways to view things from different angles is not only an exercise for Adam, but also for myself. We would all stand to gain from working to think in ways that may not be familiar to us.

We are more often concerned with our children knowing how to read the words (certainly this is the first step to reading at all). We do not learn how to talk to an autistic child who has difficulty with that reciprocity, how to really push forward, even though their manifestation of understanding is not what we expect. In my view, I feel it is dangerous to assume that Adam does not understand as much as it is to take for granted that he can just learn the way a typical child does. Yet all those years of puzzles, functional skills and communication issues makes me worried that Adam is missing the most important component of life learning, that is, to ask questions about everything. I’m quite sure I will be writing more about my in-house experiments here.

That said, I have a short story to tell. With some severe weather hovering around Toronto, there was a downburst, or a tornado. Both Adam and I enjoy watching the weather reports. With bad weather, we are glued to the TV. I was talking about funnel clouds and how they are dangerous.

“Why?” Adam asked.

“Because they can rip down houses and trees,” I said.

“Why?” he asked again. I am thinking about a three-year-old I once knew when I was an older kid and how every answer to a question he had ended up with yet another “why?” Like that, the conversation went on a bit between Adam and I. He kept asking me “why?” until I ran out of answers!

For a typical child, asking “why?” is expected. For an eight-year-old developing autistic child, it was another one of our milestones.

With that “why?” also came a series of sentences and conversations this week. With those conversations came difficulty falling asleep and some body jerks. Also interesting that along with an increased in verbal expression came an improvement on his fine-motor skills at the dining table as well as gross motor skills I noticed while watching him outside climbing structures I’ve never seen him climb before. Could this be a reason for the sleeping issues? Could his body be a-buzz?

Again, I am making a possible correlation that needs to be tested because dad let him sleep in over the weekend (school was out) and this is reason enough for not being able to go to sleep the following day and, perhaps lack of sleep and other frustrations lead to more body jerks. Yet I also wonder, only because I’ve seen it before, if sleep issues and body jerks have to do with an increased output of communication and other “manifestions,” — overall “progress.” So often we view “issues” as a result of “delay” and “behaviours” and we label it as if it is something we have to get rid of or something that worries us. Yet, with this example, Adam is trying so hard to express himself and his body may be following him as it attempts to process the steps we have taken for granted. If we take a view that such preservations, behaviours, sleep problems might have to do with processing, progress and development, how might we address and teach autistic children differently?

It’s something to think about when we study autism and when we rethink the, perhaps, very “normal” path of autistic development.

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We naturally wish to describe and understand a perception that seems foreign to many of us. As a parent to an autistic person this means a lot to me — attempting to understand Adam’s perception. Autism “experts” write prolifically on describing what autistic behaviours “mean” and these behaviours, observed by non autistic people, get interpreted and become at best, anemic descriptions of a kind of human experience. Autistic people do better at such descriptions, for obvious reasons. Yet so often, words fail.

I thought I’d post this video by musician John Cage as it provokes some thought on trying to describe the meaning of sound, that which is sensory and pleasurable, and for some autistic people, painful. As we know that so much of autistic experience is sensory, it got me thinking about the sensory experience — how life (that is, our “sensory life” ) is experienced differently by some and how others who do not understand human difference might attempt to explain inadequately.

Cage goes on to say that sound has no meaning — it just is. I thought this video was not only interesting for the purposes of thinking about perception, but also how we experience and attempt to describe autistic people. For me anyway, I felt some intersections when watching this and it in many ways reminded me of the In My Language video made several years ago by Amanda Baggs (which for convenience in case new readers have not viewed it, I have placed after the John Cage video):

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Thanks to a friend who passed along this paper (titled above) by Dawn Eddings Prince (formerly known as Dawn Prince Hughes) published in ETHOS. It is an endearing story of a mother with Aspergers to her autistic son.

Unlike Dawn, I am not a woman with Aspergers nor a primate anthropologist who has garnered much of what she has learned about humanity through primates. If you have not read her book, Songs of A Gorilla Nation it is a must-read. It has left its imprint upon me for years now. No, I am a mother of an autistic child, similar but not just like, her child, relating to my son in unexpected ways, finding my points of context from art and my own awkward experiences growing up — trying to overlay those in helping me understand Adam’s path. My stress has mainly come from outsiders who have put the pressure on us to change and be something other than what we are. I am glad to understand this stress and pressure in order to better help Adam chart his course.

From the time I began The Joy of Autism blog — and been downright attacked for it when it first started in 2005 (see right margin for the archive) — I was incapable of viewing Adam as that “blight” and “burden” that autistics were named. Everything Adam did was a downright miracle to me. Today, Adam — a kind, affable, giggly boy, has developed a curiousity and way of learning that never ceases to expand my own world and way of seeing things. Like Dawn’s son, however, Adam is changing, developing tics. He is growing into a world that he is beginning to understand in ways that I knew (and feared) he would. One could say it happens to all parents. Yet Dawn’s essay, however, cites a few exceptionalities to the growth.

People fear each other. The flavor of distance seems to me to be how a community organizes itself. The codes of distance constitute the law—for the living and the dead, so people close the lid on the toilet when they sit down to talk to someone else in the bathroom, signaling that they don’t intend to dominantly mark their territory in the midst of the other; and men can’t pick up and hold a crying child who is a stranger. This is why people always smile and say hello more often when they are on a trail in the forest, far from help, than when they are on a city street.

Unfortunately, the chief danger and distance he was learning is that people can tell you that what you are isn’t what you should be. I knew that the children at school were teasing him for talking to plants and bugs and rocks. His teacher told us he had a learning disability and had some attention deficit problems. He was starting to not be able to sleep at night and had anxiety attacks. Where he had always been an easy child he started to throw himself to the floor and scream over the smallest challenges. He started to be unable to go to restaurants because the lights hurt his eyes and the normal noise of conversation hurt his ears—he would cover them with his hands and rock, trying to get under the table. He developed strict routines and would fall apart if something unexpected happened. He started to develop tics. He was becoming contextually autistic.

This essay is beautifully written. Remembering Teryk, her son, playing in the prototype sensory room set up at The Sheraton Hotel in Toronto, where I introduced myself to Dawn and received such a warm hug from her, I feel we share a bond beyond that introduction by way of this piece on the special privilege of raising an autistic child. It is the bond of easing ourselves into the world as both autistic people and as their parents amidst the deluge of questions, quandaries and challenges that continue to face our children all the while loving them and getting them for who they are. And who better than Dawn?

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This is the first article published by realtorsthatcare.ca that I wrote on making safe yet attractive living spaces for autistic children. Thank you, Zeshan, for both caring and for being interested in this topic.

While safety may involve anything from picture symbol reminders to locks, I’ve also paid attention to “safe spaces,” that is, making safe sensory places where Adam can escape and learn to self-regulate. As I mentioned in the article, as I learn about what Adam needs, I like to create fun, aesthetically-pleases places and devices that both Adam and I can live with and enjoy.

Photo credits (and all good photos of Adam are taken by) Mike Klar whose work is linked here.

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A continuance of my last post “My Very Important Job,” I want to talk about how Adam becomes very relaxed by the ocean. The sound of the waves, of course and that beautiful sunshine — everyone was out on the beach yesterday on Easter Sunday, digging in the sand and laying around like beached whales. Adam I spend our days together and I take him to restaurants and new places to explore. I take Adam many places in order for him to become accustomed to them. He also enjoys new places especially when he’s relaxed. It is my goal as Adam is able to travel — although we have had difficult moments in our eight years. Yet I’d have to say that the difficult ones are rather rare, which might be why I tend to spotlight them when they occur. It’s funny, really, because as I talk to other parents, it seems to me that other “typical” children have had heart-wrenching tantrums. When Adam is distressed, what is heart-wrenching for me is not the “behaviour” but rather the fact that he can’t tell me with words what he needs. As his mother, I’ve had to learn to never take Adam’s movements, gestures, even types of cries for granted. They are all important pieces of information to me.

The kind of transitions that have been happening such as moving into a new home during a divorced situation is not fun for any child. Adam had his moments of extreme anxiety. In fact, it went on from the late fall until late February. A long stretch like that made me wonder if I’d ever see him smile again. Even though I knew it deep down in my heart, I did experience those moments of absolute panic.

Being in the south with Adam reminds me how anchored he is to me; how much he needs and wants me, not to mention how much he wants to see his mother smile. Watching how much he reciprocates, plays with me, wants to go everywhere with me, and talks (yes talks — he is very verbal down here this trip), is testament to the need for quality time spent with mom doing easy things. It’s also proof to me that I have to work on my own happiness and spend time doing the things I need to do to nurture it because I am not just doing it for myself. It has taken me two years to begin to realize this.

During that transition from fall to late February, there were days when he was so stressed that Adam didn’t even seem like Adam anymore. If I were a parent who would use this kind of lingo (which of course many of you know I am not), it may have seemed like “he wasn’t even in the room,” (which we know that of course autistic people are aware despite what others think of their behaviour, but this seemed like the appearance of a what Kristina Chew has coined the “neurological storm,” and I like that expression very much in terms of describing what these moments are like). For others who distill autism into that robot-type of cold person, Adam may have appeared “distant” — that we were “losing” him. He had lost all of his words, even. For Adam in particular, who is very affable and connected to people he knows well, this was a stark contrast. Yet, maybe mom was similar. Maybe it seemed like mom wasn’t really in the room anymore as I was trying to find the ground beneath my feet again after separation. I wonder how I may have appeared to my son.

Here, happy, relaxed and spending all of our time together, Adam has spoken the following:

Scenario 1: Browsing through a Payless Shoe Store looking straight at us: “Are you done yet?” Now for a parent with a more verbal child, this might seem like a nagging comment. For a parent with a child with few phrases, we were so happy, laughing hysterically!

Scenario 2: Getting ready to go but mom is trying to find her keys: “Let’s go, let’s go! Time to go, mom!!!”

Scenario 3: As he is doing something contentedly and I am trying to rush him out the front door: “Be patient with me.”

Scenario 4: After swimming and tugging on a wet bathing suit: “It hurts me.”

There are many more phrases coming out of his mouth down here in South Florida. He is not speaking in paragraphs, but such sentences are really nice surprises that this mom obviously doesn’t take for granted. Of course, Adam also has lots of physical activity down here. For a child like Adam who always needs to move around, a full day of swimming, running on the beach, climbing and swinging at the park, and going for long walks all seem to be another key to organizing that precious neurological system of his. Mind you, I’m not sure how to replicate the extent of this — the sheer quantity of exercise back in Toronto. Yet it’s another clue into how Adam needs to organize his neurology and attests to the things that make him feel happy and calm.

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We are confronted with new challenges in our new home. Adam seemed to transition well at first, but now it is difficult again. As mentioned in the previous post, we do not know if Adam’s spasms are seizures or are spurned by tumultuous transition. On my end, all I want to do is get back on track with Adam. I for certain want my sleep as I function horribly without it. I want him to get over the hump as smoothly as possible until he can have his tests and/or become comfortable in his new home and situation.

But there’s another problem.

It could be me.

I need to re-learn my ABC’s. Remember those: Antecedent, Behaviour, Consequence? We put an autistic child under our neurotypical microscope (as if that doesn’t cause distress), and evaluate the antecedent (or cause) of a behaviour so that we can seek to change (or eliminate) it. The Consequence in behavioural-speak is what happens after the behaviour. I’m not saying that these tools are not useful to us. They can be if we learn how to assist autistic children cope. I’m not a fan of eliminating behaviour. But there’s another side to this story.

When I worry I am studying Adam. I watch for every little sign. Then I realize that I’m not watching myself. How am I feeling? How has my anxiety triggered a course of events? Adam just wants to explore, and yes, he cannot sleep like most autistic people who, as they become adults, learn to cope on very little. In his new home, Adam is very “disorganized” in his body (for those unfamiliar with this language, it means that Adam is moving his body in unfamiliar ways or hyperactive ways and it can appear distressing), and I still do not know for sure if it’s medical.

Yet, I also am thinking he is learning about every nook and cranny of the house as he used to memorize routes on road trips from school to home or from his old house to the park. While he didn’t get upset if we changed the route, he certainly memorized it. I’m thinking of Dawn Prince Hughes, author (and new friend of mine since I met her in Toronto a couple of years ago — little did she know that I was a HUGE fan of her book beforehand) of Songs of A Gorilla Nation: My Journey Through Autism and the excerpt on herself as a child running around in the same circle in her house. Experiencing this first hand, it’s exhausting for a parent who wants their child to “behave” or settle. Then I have to think again.

“The way I said ’siiiilllverrr doooollllaaarrr’ was only the start of a profound pattern I had throughout childhood saying words and phrases in peculiar, experimental ways and having a complete fascination for words. When I was young, my parents and I often stayed at my mother’s new house, and my favorite uncle lived there also. A hallway ran around the perimeter of the house, past the dining room, the bedrooms, the bathroom, the front door, and through the living room back to the dining room, in a big circle. My favorite game (to the exclusion of all others) was to wait in the dining room for the adults to come up with a word — the more difficult the better — and then I would speed off down the hallway, in the same direction every time, either on my tricycle or on foot, repeating the word over and over.” (pp. 17-18).

Hughes describes then running to each of the rooms saying the word “where the word would absorb the comfort of my grandparent’s bed, their clothing, the beauty of the vanity table, and the smell of cedar drawers…” (p. 18)

Not only have I found Adam enclosed in drawers, but under the bed, and in the deep dark crawl space in our new basement. It takes a lot of effort for me to stay awake and keep an eye on him, as his safety always comes first. His body jerks, he lays on his back and holds his legs. He opens every cupboard, closet and drawer and is still absorbing them — and maybe he can do this better when he can enter them.  Save for the things that he knows — books, his computer that still has the same “Alligator King” from Sesame Street on it, and a cupboard full of crackers and goodies he now knows is his own, he is still disorganized here but is working so hard himself on trying to get organized and calm. Indeed, my boy is making gargantuan efforts.

To this Hughes writes, “I also wanted to keep as many of my own accoutrements as possible the same. This meant that I did not want a new toothbrush, new clothes, new shoes…When I went shopping for clothes with my mother [Hughes describes being afraid of mannequins]…My strategy for survival was to hide inside the clothing racks…the lack of light would calm me down. Hiding was yet another thing that later connected me to my gorilla family — when they went behind the hills to sit or seek out the little caves in the underbrush or rock to be by themselves, I would understand.” (p.21). Similarly, Adam has gone to the books that were the same from his old house. He is not interested yet in new things.

Adam’s grandparents have been around a lot to support him. I believe his grandparents are two of his favorite people (and most consistent). Again this relates so closely to Hughes: “When I was young I stayed with my grandparents on the weekends, and those were among my favorite times. I did feel safe there.” (pp. 21-22). Ask my parents and they’ll likely say that their condo is his “turf.” They have been helpful to Adam and I during this time.

Adam craves lemons during this year of transition. To this, Hughes writes, “I craved salt and would eat it straight from the shaker. I craved burnt matchheads and would suck on them whenever I could find them. I craved Alka Seltzer for its taste and feel….A sound like the thrum of a tumbler full of milkshake when is was tapped [Adam does this all the time] by a spoon or the Westminster chime of the clock would fill me with rapture.”

So I give Adam his lemons. Right now, I’ll buy him a bucketfull, although other people will tell him to “stop eating lemons,” or, “stop doing that.” Sure, I worry about his teeth, or of Adam’s safety in potentially dangerous situations. I’m not saying that we have to allow our kids to do everything, but I have to let him do more than usual and I have to change my behaviour to accommodate it right now, for this is an exceptional situation. I’m always trying to stay one step ahead of Adam to figure out how he can explore safely.

“Most autistic people need order and ritual and will find ways to make order where they feel chaos. So much stimulation streams in, rushing into one’s body without ever being processed: the filters that other people have simply aren’t there. Swimming through the din of the fractured and the unexpected, one feels as if one were drowning in an ocean without predictability, without markers, without a shore. It is like being blinded in the brightness of a keener sight. Autistic people will instinctively reach for order and symmetry; they arrange the spoons on the table, they line up matchsticks, or they rock back and forth, cutting a deluge of stimulation into smaller bits with repetition of their bodies’ movements.” (p. 25).

This is quite an overwhelming statement for me on how Adam may be experiencing his new life situation. It is quite a disability and a sensory overload.

My point is, Adam is adapting as naturally as he can in a home that is entirely new to him. He will thrust his body upside down, will spin, will seek those dark tight spaces and not be able to sleep in his new bed precisely because he has not yet created his order. But he is doing what he needs to do. I, on the other hand, despite knowing this, am having difficulties of my own in managing it. Watching my son in distress distresses me. While this may be natural for Adam, it was re-reading some of Dawn’s excerpts this morning that helped me realize what I’ve learned in the past, but am now experiencing first-hand in a larger way.

I realize that I too am adjusting to my new surroundings as I listen to the house and figure out how I’m supposed to live in it. Things break down and I get frustrated because I am not yet calm and oriented, and this is difficult on both Adam and I.  While I feel guilty much of the time that my own anxiety is not helping Adam, I know too that we are not in control of everything that happens to us. Life happens. We are dealing with it. Like Adam, I am human.

So I was thinking about going back to the ABC’s and I thought of using it as a pun on behavioural-speak because what most of us want to try and do is “fix” the situation or behaviour. Today, I am reminding myself that this needs exploration and time — we’ve only been in our new house for a week! Not only does the alphabet, which Adam loves, stay constant in a world that is always changing, but re-reading Dawn’s book has helped me realize what tumultuous change feels like to an autistic child. It may require more effort on my part now to help him adapt by creating safe ways for him to do so. Adam will reach for his ABC books that always stay the same and he’s doing his part, and I am having this feeling he will eventually make lemonade out of lemons.

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