I really like what Temple Grandin is doing in many ways. I like that she supports different minds and describes very simply and concretely what autistic people need and might be able to do as work.
There is one thing I’d like to point out to Ms. Grandin, if I may. It’s the assumption about the autism spectrum or “continuum” as she puts it. It is tricky because it has been an easy way to describe and try to understand autism. Yet like most things easy, they are not fully descriptive.
It is the point at which she, perhaps inadvertently in order to simplify the description, lowers the intelligence level of non verbal autistic people to the bottom of the “spectrum,” to the “verbal” autistics who are “brilliant.” For all the non verbal or partially verbal autistic people out there, many of who comment here and/or write their own blogs and even do their own presentations, I’d like to add that non verbal people can also be of “normal,” “bright,” or of “gifted” intelligence. Of course verbal and non verbal people can also be more cognitively challenged. There is no way we can use the “continuum,” really, to effectively describe autism and intelligence and I think we need to talk about this more.
Temple Grandin talks a lot about thinking in pictures and she can verbalize this well. For many autistic folks who cannot, like my son Adam among others, I can say that verbal ability does not equal intelligence. I hope that Temple Grandin can speak a little bit more on that in the future so as not to cast another stereotype that she perhaps does not intentionally mean to cast.
In this blog, I speak a lot about the visual — visual data and the potential for many autistic people to translate so much data into the visual so that we can better understand it. There could be many opportunities for our children if we look at this seriously and nuture the skills. As for her segment on visual perception, I once posted a drawing by Adam, who has motor planning issues, but clearly had an advanced perspective, demonstrated in some of his artwork, over his same-aged peers. I have always noted and recognized Adam’s visual abilities. It’s still incredibly difficult to find teachers who recognize and are able to nuture this ability. It’s incredibly frustrating, in fact.
I do thank Temple Grandin for being out there to discuss the need for mentors and the contributions our children can make to society, if given the chance and opportunities.
I was very excited when Pascal Cheng told me that Larry Bissonnette and he, both of whom I brought to Toronto several years ago, and Tracy Thresher were traveling the world to change views about autism. They travel to Finland, Japan and Sri Lanka to change minds, attitudes and debunk myths which was documented in the film Wretches and Jabberers. We have learned from anthropologists like Roy Grinker in Unstrange Minds, among others, that the views about autism around the world can be less forgiving because of cultural differences.
Adam was diagnosed at 19 months of age as a hyperlexic, “high-functioning” autistic boy. Over the years, however, he shows ability, is very bright and intelligent, but Adam has real communication difficulties and more “classic” aspects of autism…so dx is always precarious in the early years. I think of the very different experiences between Adam and Larry — how the world has changed so for autistic people and I am grateful for the generousity of autistic adults.
As a parent in this for just over six years now, I have to say thank you to everyone who put forth this effort. I often dream of Adam traveling the world, talking to other people, helping other people. That’s my dream, I suppose, and not necessarily his, but that’s what parents tend to do. So even if Adam chooses another path, I am thrilled that Larry and Tracy are forging a path for all the “Adams” who will grow up very soon.
“We are more like you than not,” says Larry in the following trailer.
“Citing examples of new additions like ‘mild anxiety depression, ‘psychosis risk syndrome,’ and ‘temper dysregulation disorder’…many people previously seen as perfectly healthy could in future be told they are ill….’It’s leaking into normality. It is shrinking the pool of what is normal to a puddle…
Dr. Wykes and colleagues, Felicity Callard, also of Kings Institute of Psychiatry, and Nick Craddock of Cardiff University’s department of psychological medicine and neurology said many in the psychiatric community are worried that the further guidelines are expanded, the more likely it will become that nobody be classed as normal anymore.”
Well, it’s about time. Perhaps ironically, I’m not one for self-help aisles and a belief that we all suffer from some made-up ailment that can be remedied with expensive quackery. At the same time, I also understand that there is a widespread concern that if we simply dilute human differences and challenges we do not address serious medical and practical needs. In other words, some people fear that a complete distillation of humankind will take away much needed work towards attaining the services, medical attention, and accommodations that we continue to need in order to replace the treacherous world of asylums. This article in The New York Times, cites some of the other concerns specific to the autism diagnostics proposed for the new manual.
What the Globe and Mail article assumes quite simply, however, is that there are only two kinds of people: normal and abnormal. We know that in history that it is this whitewash, this binary, that is the most dangerous because it has subjugated individuals with differing needs, thinking ability and functioning levels to not only the margins of society, but to maltreatment and exclusion of all kinds.
Until recently, disabled people have had no rights. Still today, seen as non-persons despite legislation and the ADA, disabled and autistic individuals continue to struggle for their right to have a voice at policy-making tables, and to be accepted and accommodated for their needs while contributing as autistic and disabled people. Not a day goes by that the notion of cures and getting “better” (that is “more normal”), underlies the purpose of teaching autistic people at all, as opposed to teaching them to their strengths and abilities as well as with a regard to the value of autistic contribution.
As a committe works to redefine the characteristics of autism, the questions that the committee ask in the panels are well worth reading. I cannot help but wonder how getting an autism diagnosis may change for parents and autistic people, and consider that the future could be brighter. In my view, we seem to be asking some of the right questions with regard to the spectrum of autism and the fallacy of the association between intelligence and functioning levels. So I guess I’m saying that as I read the Globe article this morning, I was sort of nodding my head. Yes, there is no normal….that’s right. Why fear that? What is it that we must do and how must we think differently in order to finally obliterate that binary?
“Currently the debate about ‘what is normal’ is causing some heated exchange; this is not new. In particular the debate concerning autism, disability, neuro-diversity and typicality poses some ongoing challenges. Disability presents itself in a variety of ways, and for most of us living with disability, who we are is normal for us. For many people on the autism spectrum, which is certainly very disability in a world that does not accept, value or accomodate ‘difference,’ being handicapped is an everyday reality…Having a respectful understanding of one another should include accessibility to appropriate resources, support, safe places and sincere appreciation of difference. Anything less is not acceptable.” (Introduction)
“If we are to achieve a richer culture, rich in contrasting values, we must recognize the whole gamut of human potentialities, and so eave a less arbitrary social fabric, one in which each human gift will fall into place.” (from Sex and Temperment in Three Primitive Societies).
Thomas goes on: “In 1952 the first edition of the Diagnostic and Statistical Manual (DSM) of the American Psychiatric Association listed one hundred categories of psychiatric illness. By 2000 this number has tripled. We’ve become accustomed as a culture to the idea that significant segments of the population are afflicted with neurologically based disorders such as ‘learning disabilities,’ ‘attention deficit hyperactivity disorder,’ and ‘Aspergers syndrome,’ conditions that were unheard of sixty years ago. Now, even newer disabilities are being considered for the next DSM in 2010, including relational disorder, sexual behaviour disorders, and video game addiction.”
“How did we get here?” Thomas asks. He cites things like a greater knowledge of the human brain and research into the area, a growth of advocacy movements that push for “awareness,” (alas, is it no wonder why most of us shudder at “Autism Awareness Month?). Mostly, the need for the advocacy marketing plan is the way to raise money for things like remedies and therapies. No family wishes to envision their children in asylums and mental hospitals (another topic because they were set up with all of the good intentions we have today for many of our “centres,” but ended up so overpopulated that the patients within them were neglected and abused). While there has been a valid reason for advocacy movements, perhaps an acknowledgement that all humans are interdependent and need different supports (no matter the severity of their handicaps), may be a very welcome change.
While we keep tripping over the question of what is normal, I wonder if we need a supplementary manual that cites abilities, suggestions for inclusion, education, and the like. Perhpas we need not define handicaps as disorders, but very real challenges and acknowledge them against the social stigma of having any kind of disability. I have to question that if the stigma didn’t exist, would we also be a society that tends towards over-medicalization? For I do acknowledge that heading into a doctor’s office these days one wonders why so many meds are offered so readily for what I feel to be the way in which we respond to life — anti-depressants and meds like Ritalin come to mind.
To me, this need not be a question of what is the right or the wrong way to be human, but how to support all ways in which to be human. A DSM can only do so much. It is up to us to ensure that we cultivate the society that treats and regards each person individually, for although we are united in our lack of normality, we are also unique. It’s a complicated matter indeed, but in the end, all we wish is to be seen and loved…blemishes and all.
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.
What caught my attention was the marketing of various intelligences today as attributes, not as deficiencies. In autism, however, we definitely have difficulty reconciling the differences. We sometimes understand and acknowledge autism as a different way of thinking and perceiving on the one hand, while on the other view the manifestation of the very same thought and perception process as impaired, deficient and in need of many therapies to correct. No doubt, autistic people face challenges and those that seem painful (indeed the perspectives on this vary greatly depending to whom we are talking) to many of us are the ones that get targeted for treatment. I wonder, however, if the very idea of thinking in proverbial opposites is the source of our problem — the one that categorizes individuals as “dumb” to “gifted.”
We are definitely conflicted in many ways regarding the way we think about autistic thought and contribution and Seth’s post helped me consider further how we might work to making autistic thought and perception process another one of the age-old multiple intelligences we don’t need to glorify, but take for granted in the best of ways.
It is said that one should write something that they would like to read. In those early autism years, as I was in that period of coalescing my arguments and thoughts about autism, I have enjoyed writing about Adam, motherhood, and our “journey.” There is a sense of therapy to writing and that can be beneficial for many people undergoing a similar situation. Writing can help us transcend the feeling that we are “all alone.” Yet I have the feeling after being a few years in this, that filtering autism down to miracles and gifts as well as horrors and tragedies has just become naïve. It’s time for all of us to up the ante (I am turning the finger towards myself here).
There is no new take these days on writing an autism and this in and of itself seems to me that either I’ve become over-saturated with the type of material, or I’ve simply reached a new parenting stage and where it takes me with writing here, I am not yet sure. I have tried to post a few interesting presentations on the blog the past couple of weeks. There are so many performances and exhibitions, and art is a segue to complex ideas often then used and analysed also by science as much as science can influence art. Of autistic performance and exhibition, please don’t label them as “miracles.”
We’ve noted what a detriment to the autistic community such stereotyping can be. Even if it’s true that autistic thinking is different, and of benefit to our society in many ways, this is no reason to call it gifted or a “miracle.” When it comes to a play, or an autistic child typing, or a group of autistic children performing for an audience, I’m really taken aback at references to the achievements being “miracles.” However, if we are referring to all of us as being “miracles,” I sort of get that — I get that embrace of the miraculous state we call human. Miracles are a short-cut answer and resolution to that which is unresolvable. Try to tie it up with a convenient conclusion, and we will all fail.
Acceptance is as acceptance does, and in all likelihood, the name is too simple while embracing everything. “Simplicity embraces exactly the right details, the right difficulties, the right complexity,” but it also requires am effort in learning, observing, studying and yes, striving to argue well here in this contentious autism community. Acceptance is not simple. Autistic achievement is not a miracle, although it has been so unrecognized in human history that it is not surprising that we have labeled it as such. This is humanity we’re talking about. It’s messy, difficult, wonderful, full of frustration, anguish and yes, joyful.
The nice thing about art is that it is a language without words. It’s why I believe strongly that it is an important (not nice and trite, isn’t-the-Autie-a-genius) approach to appreciating not only how autistic people may see and develop, but of course of understanding humanity — a very broad statement, I know, but art is a way to bridge the barriers of looking at people with neurological differences as “abnormal,” “retarded” and the like.
It is also highly ironic that I write about art and that the art world seeks so many words to critique and analyze it. Yet, at the end of the day, we have a gut response to art before we have an intellectual one.
I was thinking about this as Adam has turned to art. This is not just peripheral observation…it goes deeper. Adam studies all the elements of things with ferocity and concentration. He will hold any object in his hand — even a part of an object, turn it around and study it, tap it and consider all of it’s physical properties. He may or may not label it, as he has done since he was eleven months of age (labeling, that is), but I consider that his sharing in this manner is simply his way of sharing with me because he has trouble with words. Yet, his understanding goes far beyond the label.
W.J.T. Mitchell, in his essay Visual Literacy or Literary Visualcy? (excerpted from Visual Literacy edited by James Elkins) asks how seeing is different from reading. “Even more interesting, what would happen if we reversed the positions of tenor and vehicle in the metaphor, and treated reading as ‘tenor’ — the thing to be explained — and vision as the vehicle that might help explain it? What would happen, in other words, if we thought of our task as one of research and teaching in reading, based in models drawn from seeing and the visual system?” (p.11).
It is in this vein that I believe we can begin to explain our words about autism and challenge our very basic assumptions. For instance, consider the two drawings below. Adam, at the age of 8 has fine motor planning difficulties. It is very hard for him to hold a pencil or crayon, but in the first drawing one can see it’s coming and that he is trying extremely hard to express himself.
The drawing beside it, also a Lion, was executed by a same-aged “typical” peer. By contrast, one can see the marks in this drawing made with strength and certainty whereby Adam’s drawing seems a little tentative and soft by virtue of his motor planning difficulty. Take another look. Adam took great care and time rendering that drawing. So much so, he even walked away, came back to reconsider it and lightly put the finishing touches carefully on the tail several minutes after it seemed finished. It was so lightly drawn that it was difficult to photograph. Look at the perspective and how he tries to implement it. It is not a flat drawing. He can see how the body has several dimensions. Compare it to the “same-aged typical peer” drawing — wonderful in its own rite but by contrast, there is, as of yet, no conception of perspective. In one drawing the earth is round, in the other, flat.
Adam's "Lion King"
A drawing of a lion from a same-aged "typical" peer
It is interesting to me to watch Adam’s “visualcy” manifest. It is interesting because he does not fit into any developmental mold. While his hand his light, he is ahead of the curve by way of his perception. One might mistake motor-planning difficulty with Adam’s “retardation,” as it was formerly labeled. Now how dangerous is this when we consider how to teach an autistic person? What assumptions about his intelligence are we making? When I think of schools I get extremely nervous about moving him too slow or too fast. One simply has to SEE.
——
Reference:
James Eklins, Visual Literacy, New York: Routledge, 2008.
I love this video. It’s just that simple. “You get rid of the autism gene and you get rid of Mozart, Einstein, Silicon Valley…” I love how Temple advocates and it’s this kind of advocacy that assists us in putting ourselves, as neurotypical parents and teachers and therapists, with outrageous expectations, under a much needed spotlight. Beyond listening to her story about “gifts” is an opportunity to consider the disconnect we create when we try to “fix the problem.”
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
Lorraine came to me by way of my own website, which attests to the power of the Internet in making connections these days. Reviewing her own work with recycling computers, and how she came to regard herself by way of other people’s view of her, I of course cannot help but think about autistic people and what a “contribution to society” can look like:
For people who view obsessions as negative, this video is another story of how our “obsessions” are pathways to creativity and invention. Visit the Next Step Recycling website.
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.
I was sitting in a waiting room recently when I picked up this from the April 2009 issue of Today’s Parent magazine’s article, Is It A Learning Disability by Marcia Kaye. I turned the pages reading about “conceptual and motor problems,” and in the middle of the page was a photo of a drawing.
“They don’t draw, they scribble,” said the caption.
Who are they? I thought. Does she really know who she is referring to?
The they, is the Adam who when he made is first intentional scribble on the page, I jumped happily. Whose “motor problems,” and indeed they are challenges, in holding a pencil or a crayon seemed to be surpassed. At least the first step had been made. You see, I’ve kept every one of Adam’s “scribbles,” his effort rewarding by his marking that later turned to a happy face, a letter, a sun and a tree and one day, a happy face with long hair which he named “mommy,” at the age of six. The theyare people. They are Adam. They are individuals who are challenged but not unintelligent, who continue to progress at their own rate on the exterior, while on the inside, have many ideas and things to share.
And then there is the category of Non-Verbal Learning Disabilities, which I read with great interest. For the Today’s Parent article stated that “this category encompasses non-verbal learning disabilities (NLD’s), which is a controversial area, with possible overlap into Asperger’s syndrome and mental health issues. But the LDAC [Learning Disabilities Association of Canada] considers NLD to be a bona fide learning disability. A child with an NLD may have a great vocabulary, a good memory and an excellent grasp of detail, but miss the bigger picture. He may be a good reader, but a poor comprehender…if you say ‘Oh great, I have to get a root canal!’ they may take you seriously.” It goes on to describe the social awkwardness and anxiety issues that we so often talk about with regards to autism.”
And to to muddy the waters even a little bit more, we have the discussions over DSM V [Diagnostic Statistical Manual] and removing Aspergers or what differentiates individuals along the autism spectrum:
The Neurodevelopmental Disorders (ND) work group’s discussions have focused on three areas:
1) Possible modification of ADHD criteria to allow for co-morbidity of autism and ADHD (currently excluded). The ADHD & Disruptive Behavior Disorders Work Group has agreed to consider this possibility.
2) Discussion of the validity of Rett’s disorder as a separate disorder and inclusion of a new modifier within the Autism Spectrum Disorders (ASD), which might include genetic and medical disorders and other biologically-definable conditions.
3) How to address Pervasive Developmental Disorders – Not Otherwise Specified (PDD-NOS). The individuals currently diagnosed with PDD-NOS may still be described in DSM-V, but the work group will discuss whether they can redefine ASD in such a way that the PDD-NOS diagnosis isn’t necessary, as this diagnosis currently captures a very heterogeneous group of individuals.
The ND Work Group will be seeking additional feedback from advisors and other experts prior to “finalizing” any recommendations.
Questions still under active discussion for ASD include:
1) How to describe the “spectrum” of disorders now known as ASD (e.g., how many domains will define the disorder);
2) What is the specificity of repetitive behaviors in ASD and how might they be better defined;
3) Whether Childhood Disintegrative Disorder (CDD) is a unique and separate disorder, and if so, what are its defining characteristics;
4) Whether autism is a life-long diagnosis or whether it is possible to recover/remit to the point where the diagnosis is no longer applicable;
5) Whether Asperger’s disorder is the same as “high-functioning autism”;
6) How the DSM-V can alert clinicians to common medical comorbidities (including genetic disorders, epilepsy/EEG abnormalities and sleep, or GI problems) and potential biomarkers;
7) How to include consideration of severity and impairment in diagnosis (currently defined as “qualitative impairments”) and how to integrate these with the overall structure of DSM-V; and
8) How/where to discuss cultural influences on diagnosis (e.g., Korean use of reactive attachment disorder rather than ASD to avoid family stigmatization).
What is most poignant to me is the purpose of both the differentiation and the suggestion that the atypicalities are abnormal rather than a way of being in the world. If Adam’s way of obtaining and processing information about his environment and the people around him are respected (as they are in his household and school), then he continues to grow, mature and learn. And while there continues to be little research that truly helps us understand how “severity” has often to do more with outward “functioning” rather than intelligence, I struggle with articles that fail to discuss how society tends to want to categorize and differentiate individuals based on the severity of their learning disability rather than discussing how people with different or atypical learning needs learn and how we can better support them.
When I read the suggestions for broadening autism to emcompass Aspergers and other characteristics in the DSM V, the issue as I see it is not the damaging effects that calling Asperger’s or PDD-NOS or NLD to autism is to the person or family. For I view it as the families’ discomfort in perhaps being associated with autism. I see the issue is a continued determinism about autism and herein lies the problem. Until autism and many issues are no longer viewed as problems to be solved, but rather atypicalities that require our understanding and providing for, we will forever find ourselves spinning on the hamster’s wheel.
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.
It defintely makes a lot of sense to us as Adam has learned to play piano using visuals and patterns. He just had his first recital last week and beamed with “hey, that applause is for me?” kind-of-pride that just swells and oozes with, well….joy.
ESTÉE KLAR
TORONTO, ONTARIO, CANADA
Writer/Curator/Founder of The Autism Acceptance Project. Lecturer on autism & the media, and parenting. Graduate student Critical Disability Studies, York University. I like to write about our journey, musings, attitudes towards autism.
ESTÉE KLAR
TORONTO, ONTARIO, CANADA
Writer/Curator/Founder of The Autism Acceptance Project. Lecturer on autism & the media, and parenting. Graduate student Critical Disability Studies, York University. I like to write about our journey, musings, attitudes towards autism.
