Estée KlarTo Get To The Other Side

Eustacia Cutler is the mother of Temple Grandin. With the recent HBO program lately on her, I returned to Eustacia’s book, A Thorn In My Pocket: Temple Grandin’s Mother Tells The Family Story.

It’s not all that easy to read in this day and age of watching our words regarding “struggle” and “fight,” so overused and sensationalized in the media to the detriment of autistic individuals. She uses these words more often although the tone of acceptance runs throughout, and this is a point I like to make often about autism acceptance: it doesn’t come without facing our inner doubts. If it were, it would lack real meaning and substance. Acceptance is something we must earn by facing them.

Adam spends some weekends with his father. This particular weekend, I caught the the stomach flu. Alone and sick (thus feeling particularly so…it always happens when we’re not feeling well), I yearned to speak Adam more often and to ask how his day went.  I was yearning for connection and I was also feeling guilty of not being able to take Adam back on Sunday night, when I would typically after a full weekend with his dad.  I wished to explain this to him, but Adam does not love sticking the telephone to his ear. In fact, he is exceptionally averse to it. My mother says Adam lives in the right era with all the technology that can help him. I’m not certain it is as good as we yet want it to be, but one thing’s for sure — thank goodness for Skype.

Skype is a recent life-saver. Adam’s dad and I have begun using it often and Adam holds his attention longer than using a telephone, as the visual is easier for him to understand. I can see him and he can see me and I feel a sense of huge relief. Then I wondered if Adam did too as he had to stay two extra nights with his dad because I did not want him to catch this outrageous flu. He loves his dad, but I wondered if he had natural questions about what was happening to his routine, and his mommy.

It was in Eustacia’s introduction that I tried to seek solace from this weekend. She said, “I’ve learned how the parents of autistic children suffer from a loss of their own sense of self. We all know that a baby needs a mother to know she’s a baby, but, equally true, a mother needs a baby to know she’s a mother.”

My friends and family, even my ex, all assure me that Adam knows I’m his mother during my more vulnerable moments, like this past weekend. I asked his aide today to help him understand that Adam would have to wait one more day to see mommy  — as I was hoping he could come home, but I am still too ill (do you understand how worried I was about this yet?). Adam texted me the following, I’m fairly sure, with a few reminders from his aide:

hi mommy

i like mommy

i like dinosaurs

mommy feeling sick. Feel happy. Feel better

i had chocolate after lunch

bye mommy

love you

Adam

I’ll take it. Yet I wondered today if Adam really missed me. It’s a natural wonder, I think. Even parents of neurotypical children might wonder the same when their children are with another parent, or with friends. We too need to receive love. We need these expressions of love that we have become so used to.

Later on Skype this afternoon and evening, I had a virtual “dinner” with Adam, thanks to his dad who put the camera straight on him.  After he became upset later in the evening, his dad put him in front of the camera. When he saw me, he calmed right down and smiled again. I spoke to him softly in my mother-voice, reminding him that I will see him again tomorrow. Again another smile; crying abated. That is the mother’s reward — her ability to calm her child. I completely understand the angst mothers feel when they do not feel they can appease their child’s pain or distress because I too have been through that.

So I am elated for it’s what I get — not yet the long drawn out conversations about what is happening, what may be confusing him, what he is excited about. Yet I think I can decipher it enough. We are communicating. Indeed, I need to remind myself of this in such times when I think of Adam as a person and his future, and my future as Adam’s mother.

“Think of me as your future,” says Eustacia. “I am where you will be many years from now, when you know how it all played out, when ‘what will be’ has turned into ‘what was,’ and you will have to come to terms with it.

Perhaps not in the way you thought you would, but you’ll no longer feel trapped in a morass of angst and guilt. You will have resolved your child’s future and your own. You’ll know you’ve given full measure, and the measure you’re given has never been pointless.

I offer you my story as a promise of that: an overall insight to carry with you as a talisman. And I promise that, in the future, to your surprise, your dreams will have changed and changed you.

I know that’s not what you want.

What you want is a real talisman, a magic something you think I conjured up to coax Temple into joining life, as you hope your child will. There was no magic; there was just doing the best I could. That’s the point; that’s the talisman.”

I’ve understood my son. Maybe he understands me better than I can know in the obvious, typical way. For certain, love goes deeper.

And it is louder than words.

This study sent a little shiver through my body. Remember the story of the big bad “Refrigerater Mother?” She was the mother who was blamed for causing autism in her child in the 1960’s. Many mothers during that period were tormented for being pushed to believe they were the cause of their child’s autism. I wonder if the legend survives. From a peripheral read of the following study, this mom had a maternal “first response:”

A new study by researchers from the University of Miami shows that maternal sensitivity may influence language development among children who go on to develop autism. Although parenting styles are not considered as a cause for autism, this report examines how early parenting can promote resiliency in this population. The study entitled, “A Pilot Study of Maternal Sensitivity in the Context of Emergent Autism,” is published online this month and will appear in an upcoming issue of the Journal of Autism and Developmental Disorders.

I am not commenting on how the study was conducted nor the value of “resiliency.” I am commenting on the inference. I am a sensitive mother. Some say I’m pretty good at mothering. I’m extremely sensitive to my son, and he is non verbal. He can manage a word or phrase now and again, but at nearly eight years of age, it’s pretty difficult. I engaged Adam. I did everything (and still do everything) I can think of. He is a wonderful child who is anxious and has some sleep issues. I’m not sure I could have been even more sensitive than I was to make him more resilient. While he’s pretty good at moving around the community, going to school (with an aide), traveling, he does have extremely difficult days too and we are going through some of them RIGHT NOW during a major transition in our lives. Because of Adam I continue to grow and learn how to work with him, and there is always something new for me to learn.

With this study, I fail to see an acknowledgment (in the links I could find tonight, I have to qualify this) that for many autistic individuals the inability to speak fluently, or at all, is neurological, not just dependent on the sensitive mother. The term “re-wiring” is used a lot for individuals with brain injury and just as often by gurus selling therapies for curing autism. I will never argue that, as parents, we all want to try and help our children in a world that is often confusing and frustrating for them. Yet, I also wonder if teaching autistic children how to communicate is something very different than re-wiring, for that implies that we are fixing something to make it better. Adam communicates all the time. Like the two-year-old who may have warbled speech indecipherable to many but the parent, some of us close to Adam know what he is communicating — and quite boldly. Perhaps we might consider that working with autistic children is like figuring out the intricate wiring that already exists. Like the ill-suited American plug to the European outlet, maybe we aren’t meant to re-wire the autistic brain into a neurotypical one.

“In this study, maternal sensitivity (and primarily, sensitive structuring) was more predictive of language growth among toddlers developing autism than among children who did not go on to an autism diagnosis. One possible explanation is that children with autism may be more dependent on their environment to learn certain skills that seem to come more naturally to other children.”

I would agree that our children need our support, and this does take extra effort on our part.

“Parenting may matter even more for children with developmental problems such as autism because certain things that tend to develop easily in children with typical neurological development, like social communication, don’t come as naturally for kids with autism, so these skills need to be taught,” says Jason K. Baker, a postdoctoral fellow at the Waisman Center, University of Wisconsin-Madison, who conducted the study with Messinger while at UM.”

I don’t disagree with the idea that autistic children require more support and accommodation in a confusing environment, and that “being sensitive” is especially important. Many of this know this. I tend to see this as part of the autism and NT (neurotypical) equation, for the key is that we as parents learn how our children learn and how they see the world. I don’t see it as a tugging into “our world,” but a sharing. It’s the manner in which we, as parents, figure out how to be with the child who is already with us, with challenges in a world that has such difficulty understanding autism, but also with many strengths and attributes. Acceptance is a daily exercise and the idea will challenge us day in and day out — some days (and nights) more than others. Every day Adam works so hard to accept me, to accept this world and the people around him, and I wonder if that’s all we seem to ask him to do. The least we can do is to accommodate him and what he needs and wants from this world.

This article ends with a shallow disclaimer: “We know that parenting doesn’t cause autism. The message here is that parents can make a difference in helping their children fight against autism.” Okay, it doesn’t cause autism, but the implication is that the sensitive mother can improve language acquisition and resiliency skills. The results may have been one hundred percent true according to the study design, but the key piece of accepting autism is missing.

While it is certainly advantageous to have a sensitive parent to ANY child, I would hate to think that one might judge me as being an insensitive one if my son is not able to speak. Further, the focus on mothers specifically has reminded me of times I thought had long gone by. Maybe the Refrigerator Mother still lurks in the dark recesses of some minds. To conclude from my peripheral read and no reading of scientific critique on how the study was conducted, I sniff not only an omission or two, but a little bias.

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.

We’ve had some encouraging messages lately, haven’t we? The HBO production of Temple Grandin played by Claire Danes shows that while (and many of us have read Temple’s books already) the world caused her anxiety, she could “see details other people are blind to,” she says. “I have a gift.”

Certainly the idea of giftedness, which happens in non autistic and autistic persons, can be yet another stereotype in assessing autistic people. Perception, on the other hand, is something to think about deeply.

When Adam was very young, we had these water blocks that were dyed different colours. Adam was mesmerized by these blocks watching the water swish and swoosh. Then all of a sudden, my wobbly toddler took them up to the window and peered through them. Ah, I thought. If only we could all stare at the world through coloured water blocks. How beautiful it would be. I know was also in part a cooing mother of a young autistic boy, so anything he did like this made me hyper-aware. But still.

When he got his “legs” and we began walking around the neighbourhood, Adam memorized his routes. To this day, if we take him to his old house and walk from there or the park nearby, he will remember how to get to that park or get back through the old “secret pathway” to the old house — which has even since been torn down and rebuilt! Remember, that was his two-three year old brain. In April, he will be eight-years-old.

Coming out soon will be a new version of Lewis Carroll’s Alice in Wonderland, directed by Tim Burton. Many people suspect that Carrol was himself autistic with his different perceptual abilities. He is often cited as a person who “suffered” from micropsia and macropsia, which is a neurological condition that changes the way the brain perceives the size of objects. When Alice falls down that rabbit hole, we get a look into Carroll’s mind.

Scientific American Mind published Extraordinary Perception by Wray Herbert this month. It discusses how psychologists at University College London “think that it might be a mistake to consider [autistic] distractability as simply a deficit. To the contrary, Anna Remington and John Swettenham and their colleagues speculate that people with ASD might have greater than normal capacity for perception, so that what appears as irrelevant distraction is really a cognitive bonus.” I added autistic to distractability as many therapies for autism as well as medications are geared at lessening it.

The test, the article shows, was for subjects to “rapidly determine if the letters N or X were present in the ring” on a computer screen. Participants had to then “hit the corresponding key on the keyboard. Some of the circles — those with more letters — were more difficult to process than others. There were also other letters floating outside the circle, but the subjects were specifically instructed to ignore those letters. Those floating letters were the laboratory equivalent of an irrelevant distraction in the real world.” In measuring perceptual capacity, researchers saw that “everyone was slower at the task when the ring contained more letters. The researchers were also measuring distractibility. When a letter outside the ring was one of the target letters (N or X), the subjects often took a longer time finding the N or X in the ring — indicating they were distracted by the presence of a target letter in the location that they were supposed to ignore.”

The researchers reasoned “that as long as the subjects’ total perceptual capacity was not exhausted, they would also process the irrelevant, distracting letters within their visual field. Once they had surpassed their perceptual capacity — once the ring of letters was sufficiently complex — irrelevant processing would stop [bold mine]. So if ASD subjects in fact have greater processing capacity, then they should process more distracting information even as the main task becomes increasingly complex.”

In conclusion, “although there was no difference among subjects in either reaction time or accuracy on the main task, those with ASD processed the irrelevant letters while solving much more complex problems...Put another way, they weren’t ignoring the main task, nor were they distracted away from it. Instead they were completing their work and moving on, using their untapped capacity” [bold mine].

This article also concludes that while this is a benefit, it also does have “real-life consequences.” They begin and end the article citing Tim Page, an author with Aspergers from his book, Parallel Play: Growing Up With Undiagnosed Asperger’s. Page recounts his time in school who failed an essay about his field trip which was quite detailed in terms of his way of perceiving it, and how he was scolded for writing in that particular way. “I had noticed the wrong things,” he writes.

As a parent of an autistic child who has difficulties with verbal communication, I have to ask the question: “whose problem is this anyway?” Certainly I have been dealing with issues, at least issues for me as Adam cannot comment here yet, so I am fully aware that I need to be fair. He has very real sensory and perceptual differences, so I set up a basement full of equipment for him to self-soothe. He has even learned to “self-regulate” by going to read his own books, and I never had to teach him that. His body will completely quiet as he flips through pages of encyclopedias, dictionaries, cookbooks, among many other subjects. He may even appear to layperson as not really paying attention and just flipping pages, but I know it’s more than that. His body-jerking almost always stops, which is how I conclude that he is soothed by his books. I am imagining him looking at those books over and over again, and what he may be gleaning from them. Still, when it comes to getting the responses WE need, he using a “special” reading program at school. Indeed it is really helping with his expressive reading ability, and maybe even with his vocabulary. So I need to let him do both. He needs to learn to respond in a world that doesn’t yet understand the way he learns. He also needs to flip through pages and pages on his own. I can sit beside him sometimes also and talk about the books he is reading. We can type about what he is reading, we can draw stories and make more conclusions or assumptions about what he is reading. When we do things together calmly, we are having lots of fun.

When we teach him a new communication device, it may appear to the person who is teaching that Adam is not focused enough — indeed he appears to be “highly distracted.” On an AAC device (we are still awaiting one from a service-provider here in Toronto) his finger will go to the right picture, letter, or answer, and then he will quickly go to another one to check out what it will do. A keyguard helps him direct his finger more quickly to the correct response. He may have trouble finishing sentences (when he types) and then be reminded to “stay on task.” This is in large part what Facilitated Communication attempts to assist with if done correctly — to remind and assist with the focus. To a person who cannot detect that Adam was about to give the “right” answer (or rather the answer that was requested of him), he would receive a failing grade. Adam is very young and I believe he is not given the benefit of the doubt enough, although his team members are good with this.

It is only fair to say that we do not KNOW everything he knows. We do not fully understand how he takes all this knowledge in and we are the ones that deem his versions of knowledge as irrelevant. We have not developed sufficient ways to measure his responses or his way of learning and seeing, except for the ways we measure responses and knowledge from people who are not autistic. This brings me back to the old ABA adage, “if we can measure it, we can deal with it.” Unfortunately, the way we have historically dealt with autism is by eliminating the behaviours and learning patterns that are essential to an autistic person’s existence. Perhaps continuing to fund this research more heavily is important because as we understand how autistic people learn, we can not only develop better learning tools, but come to better appreciate our children.

Trying to understand this is a first step. As Adam’s parent, I see many of the so-called “issues” being mine, and yes, I become just as frustrated as many other parents out there. It’s really hard to see Adam in distress and it’s even harder to always be guessing what may be causing anxiety or body-jerking (Lack of calcium? Trouble at school? New self-awareness of difference? Trouble with transitioning from task to task? Lack of sleep? Seizures? A very long winter? Lack of exercise? Another neurological issue?…The guess work list is too long). Since Adam appears to be in discomfort since late last fall, I am really working hard at figuring this out (wait-lists are long here in Toronto). Sleep issues, anxiety issues — I know when I have a level head, there is more that I can do for him to ease the situation. We need science now to figure out many of our questions.

Sometimes it feels that makeshift solutions only lead to more issues. Sure, we all want things to be a little easier, but Adam requires more consideration in order to achieve that balance between helping him through discomfort as well as accommodating his needs. As I have been through a difficult year, like many of you out there, I completely understand the reasoning, but I have to keep a level head and look at what Adam has also gone through with a “broken” family. I have needed my sleep, but if Adam cannot, I have to find safe ways of letting him stay up until his body will sleep naturally. I know what I’m saying isn’t easy and there are still days I will resort to the Melatonin, even though, because of the guesswork involved, it pains me to do so. Yet I also know it’s important to stop and slow down and think about how Adam feels and perceives. When I do, everything seems a little easier. As a parent, I can even become proud of myself (it’s important) that I’ve not only managed well, but have helped Adam out too. We are still on that path to finding out if we can help Adam, but I am always wondering excessively about how I perceive the “problem.”

I’m interested in what people in science think about this Perception study. I think we have to spend a lot more time imagining what it feels like to be in Wonderland.

——-

Excerpts from:

“Extraordinary Perception” by Wray Herbert in March/April 2010 issue of Scientific American Mind, pp. 68-69.

Further Reading:

Selective Attention and Perceptual Load in Autism Spectrum Disorder, Anna Remington, John Swettenham, Ruth Campbell and Mike Coleman in Psychological Science (in press). Published online October 14, 2009. www3.interscience.wiley.com

I’m not talking about relationships. I’m talking about Adam’s third night at his new home. After letting him explore, be tense, be happy and then settle, he spent his third night in his own bed.

The past two days when I’ve picked Adam up from school he has been running into my arms with a huge grin on his face. I have to admit that his hugs and grins are like Valium — the moment he does that my entire body relaxes. As his mother, I am happy when Adam is happy. Adam is happy when I am happy.

One thing is for sure as I watched his face searching mine this morning and on his way out the door to school is that for Adam, I am home. This is home because I am here. For all the worrying I’ve been doing, it dawns that I am the most important person in Adam’s life. I am the most constant, the most present, although, of course he has many people who also love and support him.

Below is a little snapshot of Adam when he came home from school as I let him relax. It doesn’t show the exuberance that came afterward — and the searching for mommy in order that he could snuggle in the crook of my arm for me to read him his favorite books (Little Ms. Shy and Mr. Quiet, no less). As I watch what Adam does and how he does it; as I pay attention to the books he brings me, he is telling me a whole lot. I say this as I am also skeptically reading about a cuddle drug for autism (Adam is the best cuddler and most affectionate child). It can be frustrating when I am worried about Adam and he cannot communicate everything that’s on his mind. Considering all the issues with autism and communication, it is those moments when I step back and pay attention that I can really appreciate Adam and the many things he has to say. Thank goodness for autistic behaviours for they are telling me so much! Adam is telling me how much he needs me and my support. He is telling me how much he loves me!

We are home.

Here’s the little after-school video:

VID 00039

Adam is almost eight years old. I can hardly believe how the time keeps marching by; how the year of separation from Adam’s father has also gone by. Soon, Adam and I will be living in our new house and rebuilding our lives.

Adam is changing and I reminisce from the early days — when he was diagnosed at 19 months of age, how I started this blog back in 2005. He is becoming more curious, more adept, stronger. He is always learning. He gets frustrated. He still cannot communicate with words very well. He must use a device. He does not understand, I believe, inherent dangers as he explores his new exciting world. Laundry chutes, small dark corners are inviting spaces for all little children. I teach as best I can with a firm “no,” a new rule that he can easily comprehend, and a stop sign posted to various areas of the house. It may not be “designer” but style makes no sense where safety is concerned.

Adam is also heading out into the world. Yes, he has his aides. But as a newly separated person who now must share time with Adam’s father with regards to Adam, I find myself during lonely nights thinking about how life is always about letting go: of fear, of things, of little children growing into bigger independent children (or quasi independent in our case). As Adam grows, I must learn to let him out into the world with others so he can learn more. It is a great challenge for any parent, and perhaps even more punctuated when one is a single parent. And as all things with our children as we watch them grow, it’s (delightfully) bittersweet. Adam would grow up resenting me if I held him back and did not let him explore. I have to let him do it in safe ways, in stages. When he grabs that sharp knife to cut a piece of fruit, I have to teach him with a dull knife (and with supervision of course). I have to let him explore dark spaces by creating safer dark spaces. I have to let him jump around the house, not on furniture where he may hurt his head, but on equipment set up for the task of jumping. In the case of Adam and his neurological needs, I also have to LET him be who he is and get the feedback he needs.

He needs to run, he needs to jump, explore, and yes, eat lemons. I would never be able to hold him back to change these activities because they don’t look like typical play. I need to provide him safe avenues to explore these things. Instead of viewing these things as “overwhelming” because they are not what all typical children necessarily do, I must learn new ways of helping him explore. While there are not as many programs and “how-to” books out there, common sense, time, and a deep breath help me figure it out.

It’s the same at school and we are lucky right now to have a school that allows Adam to explore safely, that allows aides, that allows us to bring in adaptive technologies and programs that help Adam learn in the way he can. But when people first meet him, I am starkly aware of how they will measure him — what “competency tests” to assess what he does and does not know that are delivered in a way that we take for granted, and perhaps that Adam would not be able to respond to. Far less effort (and money) is paid to adapting those tests so that he could respond — like visual options for answers, multiple choice. Adam is extremely visual and “performs” well when given this option. And I write this because I saw the movie NELL last night with Jodie Foster. I have been calling Adam — among many nicknames like boo boo bear, moo moo, Adiboo, Adamame… and Chickabee — the nickname Nell uses in the film. I must have picked it up a few years ago when I first saw it. I love the movie Nell because it reminds us that humans can create languages that perhaps not everyone understand easily and in the way we are used to, but how we create meaning.

And Adam communicates, indeed. He has a language that I’ve learned to, believe it or not, take for granted! But as he goes out into the world not everyone will know his language. He would be given those “competency tests,” and maybe even fail because they don’t measure in a way that addresses how he can express what he knows. So yes, my Adam now goes out further into the world. And yes, we have to teach him to communicate within it and learn the more common way of communicating. But I still believe he will and should always keep his mother tongue.

As a curator of art I have a special interest in “self-taught” art, otherwise known as “Outsider Art” or “Naive Art.” I find these latter terms unfortunate if not unnecessary and, noting my bias, degrading as terms to describe the work, typically, of challenged individuals. In the Art World, the term was used to create a category of art because it did not seek a point of reference from within the “higher” art world.

This post for me is thrilling. Today’s Parent magazine in an article called “Is It A Learning Disability?” , suggested that children with learning disabilities (LD’s) ..” don’t draw,” the caption said, “they scribble.” They is used as yet another “outsider” term, using the “they” as a foreign connotation. I retorted at how important any human marking is, a scribble or a sun. Adam’s motor planning issues makes holding a pen or pencil very difficult. He could draw letters lightly when he was very young and his first “picture” was a happy face with long hair when he was six years old. When I asked him who it was he said “mommy.” Of course that stays in my treasure chest forever.

I like to draw and I’m quite average at it. This past summer, I spent a few hours with Adam drawing what was around us at the cottage we rented, and I tried to teach him how to paint by numbers with a watercolour set — to “stay within the lines.” So counterintuitive is the paint-by-numbers set to me, but I noticed Adam’s willingness and effort to gently use a small watercolour brush, and his keen interest in painting. It also doesn’t hurt that one of his grandmother’s is a painter, his grandfather is a photographer, and his half-brother, a master at etch-a-sketch, not to mention his other artistic pursuits. Adam is interested in all of their work and I’m certain they have all imparted their own abilities to him.

I was not expecting these drawings passed to me from school the other day because I guess we can never know if or when we can expect things to happen, and it wouldn’t be anything I’d force upon him. Adam draws, as of this week, by his own motivation. He suddenly copied pictures from books and I’m utterly breathless at his line and his attention to detail. He told his aide what the pictures depicted and you can see her handwriting — a verbatim record of what he said. From a developmental perspective, I suppose you could say he is seeing the “whole picture.” His attention to detail, bearing in mind his motor challenges, seem remarkable particularly when one’s child has not been able to express themselves easily.

Art can tell us a lot about what a person sees, how they see it, and how they can express it with certain challenges. As I was always certain that Adam could “see the whole picture,” I post here, I suppose, what society needs and what it likes to chew on, which is the sad part of being a part of such an achievement-oriented society. But let’s for a few wonderful moments just savour how beautiful his lines are — how delicate and careful.

Maybe we all need to be as delicate and careful when discussing the abilities and challenges of all people. We may not all become artists, we may not all talk, but it certainly does not mean that we do not understand or have anything to say.

Adam had a more verbal day today. I guess that’s normal lingo for a family with an autistic child who has real trouble with verbal communication. One his “more verbal” days, he can get out phrases and sometimes full sentences. He can take his teacher to the closet, grab his lunch bag, put on his velcro shoes and proclaim “go home!” twenty minutes before dismissal. He can come home and reach for his toy alligator from the shelf and then find a smooth concave shell and say to me “crown it.” When I acknowledge that he’s pretending it’s the Alligator King from Sesame Street (yes he can watch the video about 500 times a day if we let him), Adam is very pleased. He crowns his pretend alligator a few times and moves its mouth as if he’s trying to help the toy talk. I pause to wonder what Adam thinks as he manipulates the mouth with no sound.

I imagine all the things he wants to say to me on tougher communication days, and how frustrating it must feel. I imagine all the questions he has to ask his parents regarding their recent separation that cannot yet ask, though I am clever enough to know that he thinks them and I have to behave as if to answer them all for my behaviour sets the tone for everything. I have seen and known enough to witness that he can follow every instruction and he understands more than he can express. In the movie Awakenings, Dr. Sayer asks the mother how she knows what her catatonic son is saying. She replies, “You’re not a mother. A mother knows.” It is true in my home as well. For seven years every sound, every move, every expression and I just know. Sometimes I have to be careful to listen because I actually may be paying more attention to all those other subtle behaviours instead of that speech he tries so hard to get out. I suppose my actions also speak louder than words as they model for Adam and they may have become just as important as facund explanations. Perhaps if we were observed carefully as a unit, others would see this daily orchestration that we have come to take for granted as much as those who speak take what they say for granted. In our house, the saying “actions speak louder than words,” cannot more more true.

Adam also has many abilities in helping out mom and dad, for he loves us both so much. I think it’s just one of his very precious gifts to us, and that he gives to others (although mom and dad are in that exclusive category). I know that Adam is a wonderful, loving boy who will give this gift to many during his life and I know he will bestow the new people in his life with that blessing. I guess, in a very special way, he is a lot like the king’s seventh son. In my opinion, he deserves my crown, and I hope he won’t mind the dents.

There’s nary a moment when I won’t find Adam engaged in some new passion. Unlike the so-called “static” nature of supposed autistic interests and fascinations, I find Adam’s interests variable and ever-evolving.

Lately, he loves puppets, faces, art (he’s an excellent artist), making faces, swimming, the ocean, and most of all, reading cookbooks and then, cooking. He has always enjoyed cooking, but now that he has better coordination, cooking becomes more fun. I thought of this when I traversed upon this website: http://www.mywire.com/pubs/Lets-Cook/

Adam deciding what he wants to eat at Tony Roma’s

We’ve always wrote out the recipe in visual form for Adam to follow, and I know many parents employ this structured approach which works very well. For those of you who are new, you might want to check it out. It’s a good step to break down other creative projects as well, and might give parents some ideas.

Adam used to be the young boy who wouldn’t have much of an attention span. He used to “obsess” over his alphabet and numbers, and love to watch videos over and over again, and we expanded his interests by using his own and also allowing him to just be with his own. While he likes the alphabet I once never imagined, in his early days, when he wouldn’t need the alphabet anymore (in the calming sense or as a restricted interest). I could have obsessed over this as a parent and let it (excuse the pun) eat me up. Now, we watch little tv and spend our days reading, making things, going out, going to the theatre, playing and visiting friends, discovering new toys and yes, in the pool of our activities, there is still a lot of swimming.

I keep wondering how to relay this to a new parent of a young child who has just received an autism diagnosis. How do you talk to parents about how life will be? It is a question that many of us “older” parents think about a lot. There is no way, I have concluded, to offer advice except to speak of our own path and acknowledge that everyone has their own journey. My life with Adam is different than I thought it would be before I had Adam or before he was diagnosed. Yet today, as we’ve simply lived our lives, we no longer fret our days away. We just do. We just live. Only time and learning to live with Adam as a member of our family who as GIVEN so much to us, has it mellowed me. One could read this journey by going back to the early days of my blog as I observed prejudice, among so many other injustices. There comes a point, unless it is outright cruel and pointed, that one becomes less angry and understands that the only way to social justice and acceptance is to carry on with a level of determination and constancy.

To live peacefully is our ultimate aim. To accept autism isn’t to accept in order to cure or “recover” (a silly word used as a curtain to hide the word “cure”). Acceptance means to leave what is and get on with living.

Hmmm… I wonder what I feel like cooking tonight….

In the seventeenth century Spanish and Dutch ships came ashore to the new land and killed natives because they were perceived as “pests.” In 1828, The British Captain Robert Fitzroy arrived on a survey mission for the Royal Navy. Fitzroy took four natives as captive back to England to transform them into “civilized” people. “After nine months of religious schooling, [the natives] were summoned to appear at the court of King William IV and Queen Adelaide, where Fuegia Basket [a name ascribed to one of the native girls in England] was presented with a lace bonnet, a ring and a small dowry. To fulfill his goal of bringing Christianity to Tierra del Fuego, Fitzroy set sail on December 27th, 1831 on the 240-ton bark HMS Beagle with seventy-four crew members, and Anglican catechist who would establish a mission with his three converts, and a recent graduate of Cambridge, the young naturalist Charles Darwin.” (p. 90 Blessed Unrest).

As Paul Hawken writes, Darwin had only seen natives clad in “civilized” clothing up until the time he reached the New World. He did not expect to see, I imagine, Fuegians clad in seal blubber. He could barely accept that the Fuegians were members of the human race. He said, “I could not believe how wide was the difference between a savage and a civilized man: it is greater than between a domesticated and wild animal, in as much as in man there is a greater power of improvement.” (Charles Darwin, The Voyage of the Beagle: Journal of Researches into the Natural History and Geology of the Countries Visited During the Voyage of H.M.S. Beagle Round the World, New York: Modern Library, 2001. p.122).

Like most of us, Darwin’s powers of observation failed him. Darwin was, Hawken notes, surprised by the Fuegian’s ability to mimic — they could do so with language, right down to entire sentences, coughs, facial expressions. Yet, “because he could not easily distinguish words in their own native language, [Darwin] concluded that they were merely repeating a few simple phrases and thus had a very small vocabulary.” (p.91). Darwin said, “Their language does not deserve to be called articulate: Capt Cook says it is like a man clearing his throat; to which may be added another very hoarse man trying to shout & a third encouraging a horse with that peculiar noise which is made in one side of the mouth…I believe if the world was searched, no lower grade of man could be found.”

Because Darwin didn’t understand the Fuegian language, because they were not like him, he deemed them barbaric. Little did he know that Fuegian culture was ripe with “animated and nuanced conversation.” Thomas Bridges, an orphan adopted by a missionary family, “spent twenty-one years compiling a dictionary of 32,430 words and inflections [of the Fuegians], a number that was comparable to Japanese vocabulary, before accounting for Chinese and English influences. Because Bridges died in 1898, before the dictionary was completed, we are left to imagine the sum of the Yamana vocabulary. [Yamana is the Fuegian language].

“As you turn the pages of this remarkable document, you realize that there seems to be a precise word to describe every moment in their life. To appreciate the intelligence required to understand and use 32,430 words, consider that Samuel Johnson’s Dictionary of the English Language, published in 1755, contained 42,773 words. Shakespeare is credited with having used 29,066 different text words in his complete works, but in terms of truly distinct words, and disregarding overlapping usages, there are fewer than 20,000 words but will use no more than 1,500 to 2,000 over the course of the week. Half of the conversational vocabulary of an American teenager consists of fewer than forty words.” (Hawken, p.92)

Hawken’s book Blessed Unrest is about the loss of indigenous cultures, abuse of the environment, free-market fundamentalism and social justice. He notes that with the loss of a language comes the extermination of a culture.

Autistic people and the disabled community call themselves a culture, to which there has been vitriolic response from non disabled communities, namely parents and caregivers. I have to question, then, what constitutes a culture and why the self-appropriation of “autistic culture” by autistic self-advocates has become so offensive to some care-giving groups. One automatically assumes that anger is generated by a fear of loss — services, empathy, pity, perhaps. This has been the assumption by disability rights activists, after all. Yet why the contest? I personally see no reason why thousands of people who come together and self-appropriate “culture” is not just as valid for autistic people as it is with Native people, Black people, Asian people, Jewish people and so forth.

I am herein beginning to make a case for autistic culture. I am pointing out that our autistic children, privy to the same, potentially harmful assumptions that they are of lower value because they are not understood by society-at-large, are not Darwin’s children, yet, they are treated no differently in most cases than Darwin treated and referred to the Fuegians.

This will not be my complete essay on the topic. I am only suggesting that a culture, by virtue of the following definitions we’ve used to ascribe a people as a culture are:

” – a particular society at a particular time and place; ‘early Mayan civilization’
– the tastes in art and manners that are favored by a social group
– acculturation: all the knowledge and values shared by a society
– (biology) the growing of microorganisms in a nutrient medium (such as gelatin or agar); ‘the culture of cells in a Petri dish’
- the attitudes and behavior that are characteristic of a particular social group or organization; ‘the developing drug culture; “the reason that the agency is doomed to inaction has something to do with the FBI culture’
– grow in a special preparation; ‘the biologist grows microorganisms’
– the raising of plants or animals; ‘the culture of oysters’ “(Source: Wordnet)

It seems to me that autistic people, or people within the autistic culture, share these attributes. The most highly disrespected aspect to autistic culture, and perhaps the least investigated from a point of validity, is autistic language — an “agent” of autistic culture. That is, as long as we view autistic behaviour and actions as irrelevant and deviant, much like Darwin did to the Feugians, we are potentially missing a rich dynamic system and people. In a world where English is used everywhere and we are homogenizing world-wide mostly in the name of business, we will kill off indigenous cultures by the thousands. Hawken’s writes “A language dies when it is not spoken to a new generation of children. At the rate of decline we are now experiencing, half of our living cultural heritage will disappear in a single generation.” Language, many linguists state, is a distinct way of experiencing and sharing dreams, ideals, visions of life itself.

“A Western bias about belonging to a superior culture is valid only if we use selective yardsticks,” writes Hawken. “Rather than assuming people want to surrender to Western values we would be wiser to consider the loss of language as yet another indicator of worldwide collapse of ecosystems…” (Hawken, p.95).

Can we define, narrow down, or record a distinctive autistic “language?” Is autistic language and modes of expression systematized? It seems to me we have absolutely recorded many of the nuances of autistic language and behaviour — the latter which of course is a form of language. Just look at the DSM (Diagnostic Statistical Manual). Like Darwin who put on a set of glasses with a view to calling native culture “inferior,” the DSM uses similar terms of inferiority to define what autistic people and their language are not, rather than what they are. If we can observe and categorize a group of people as “deficient,” then the opposite can be true. Autistic people, like other indigenous peoples, are in and of themselves distinct — a group with their own language, behaviours, modes of expression, art and for the most part, values.

Adam’s language contains thousands of nuances, combinations and permutations — gesture, noises, words, typing, singing, and more, which I have come to understand quite well. I have not yet sat down to describe every single utterance, but as you note on this blog, I sometimes do try to record things for the sake of suggesting that his language is just as valid as mine.

I would strongly encourage everyone to consider that autistic culture is something we should cherish, not perish. Darwin’s view was that there were “higher” and “lower” kinds of people, something that autistic people can attest still exists when others define them. We don’t have to put on rose-coloured glasses to see autistic culture, we just have to consider changing the lens.

I have the sequel to Adam’s doggie conversation of last week. If you remember, he looked me square in the eye and declared that he wanted a black dog. For those of you who are just dropping in to this blog and haven’t been with me since 2005, Adam has had great difficulty in expressing himself in speech. As he begins to turn seven years old (remember, he was diagnosed at 18 months of age), he talks a little more and a little more all the time. Much of it is still hard to decipher but I don’t let him know that… we just keep on talking. What is emerging more clearly for me anyway in year seven is that he is more demonstrative and has proclaimed “CONVERSATION,” thereby letting me know that he certainly gets the concept. I know and believe me, I understand how a parent longs for such conversation in their autistic children. I remember Adam years ago. I have video tapes of those days.  I’ve longed for it too. Yet, I’ve also learned to adapt and to understand the many facets of communication that continue to teach me what Adam is saying to me. Adam continues to teach me many things.

Perhaps it coincides with learning to type last February, or an accepting school situation — one can never really sum up the many methods, environment, and attitudes that comprise the unique chemistry of our method or the uniqueness of Adam himself.

Tonight, to pick up on the doggie sequel, he showed me he wanted to talk about them by bringing a book out. We typed tonight’s conversation:

Me: Mommy and Adam are moving in the summer to a new house. Should mommy buy Adam a puppy?

Adam: puppy poo poo

Me: do you want a new puppy of your own?

Adam: puppy is a toy oui

Me: oui means yes in French

Adam: puppy is a hat on yes [he played a game on his own this morning where he pretended his bowl was a hat and created his own hat song with the game, so I am assuming he is making an association between fun and the dog]

Me: a puppy is fun

Adam: outside is good

Me: a puppy can play with you outside. Maybe a puppy can fetch a ball.

Adam:  puppy is poo poo

Me: you do not like puppy poo poo?

Adam: right

Me: but if puppy’s didn’t poo, would you like them?

Adam: right. poo poo is poo poo.

Me: yes, puppies are dirty.

Adam: yes outside is good

Me: puppies belong outside

Adam: yes

[Adam has now moved on to a page about teddy bears in a book]

Me: teddy bears are cuddly.

Adam: open kite

Me: are teddy bears free?

Adam: is yours?

Me: teddy bears make me feel good.

Adam: perple xing

Me: why?

Adam: open kite

Me: teddy bears are not real bears. Teddy bears are not living.

Adam: teddy open kite. people press hat

Me: interesting. open kits sound like fun.

Adam: yes. perple xing

Me: it sounds like open kites are so much fun that it gives you much to think about.

Adam: open kite is open. kite is open.

Me: open can mean full of possibilities.

Adam: yes it up perple xing people

Me: people are perplexing and sometimes people can be confusing.

Adam: people are people.

It is this last line I particularly like — the simple acceptance that people are who they are. It of course, made me think of my years at the university pub in the eighties listening to that old Depeche Mode song:

People are people
So why should it be
You and I should get along so awfully
People are people
So why should it be
You and I should get along so awfully

So were different colours
And were different creeds
And different people
Have different needs
Its obvious you hate me
Though Ive done nothing wrong
Ive never even met you
So what could I have done
I cant understand
What makes a man
Hate another man
Help me understand
People are people
So why should it be
You and I should get along so awfully
People are people
So why should it be
You and I should get along so awfully
Help me understand
Help me understand

Now youre punching
And you’re kicking
And youre shouting at me
And Im relying on your common decency
So far it hasnt surfaced
But Im sure it exists
It just takes a while to travel
From your head to your fist (head to your fists)
I cant understand what makes a man
Hate another man
Help me understand
People are people
So why should it be
You and I should get along so awfully
People are people
So why should it be
You and I should get along so awfully

I cant understand
What makes a man
Hate another man
Help me understand……

And so it is. A little boy’s wisdom. Somehow Adam has the ability to help people understand, I think.