On Becoming a SELF

"Wa wa..woo. Wa Wa...woo." Adam's hands open and close to his own utterance of "quack quack..ribbet. Quack quack...ribbet," like he's using his hand as a puppet. In fact, on a Baby Einstein video, there is a little performance by a duck and a frog. You too might be intimate with this little act if you've watched Baby Einstein as much as we have in this house. I digress. The duck and the frog do their little bit until ALL OF A SUDDEN, the duck ribbets, and the frog quacks! Adam seems quite amused by this little interchange. So much so, he has enacted the scene with his very own hands.

I have a little theory. (I have many about autism, but I'm not autistic just a very close observer). Adam seems to be talking to his hands at times. Sometimes his fingers do a little dance that wiggle in sync with Mary Had A Little Lamb, and other times, his hands open and close like those puppets to various dialogue. The obvious insight is that Adam has taken the scene and adopted it himself..the first stages of pretend play. But the real a ha for me is the realization that his hand is an extension of himself, let me press, could at times EVEN BE HIMSELF as he sees himself. "Body awareness" is difficult, it is said, for people with autism. Tito Mukhopadhyay says it took him years before he realized he had a body. He discusses that he wondered if he lived just in his thoughts rather than in the physical world. Adam can see his hands. It is easier for him to imitate with an object, for instance, than it is with his body alone. I see Adam's hands and simultaneous dialogue a little deeper than sheer stereotypy. I see it as his pracitising dialogue and speaking through his hands. If he can't SEE himself talk, perhaps it is easier for him to WATCH himself through his hands. I consider that like an actor, who projects a character that is not himself, does in fact REFLECT his own true character. The PROJECTED OTHER and the SELF are entwined.

Projection/reflection through puppets is a technique often used with abused and traumatized children. It is easier for such a child, perhaps, to enact a scene without having to identify one's true nature, or character. Children often draw scenes to communicate because it is often to do so verbally, especially painful experiences.

Adam is projecting, practising, through his "characters," the duck and the frog. He is practising language. I am wondering that to talk to his hands, if he feels more grounded, more aware that HE IS HERE.

This is abstract stuff. I have a wonderful new supervisor who is BCBA but also has a Ph.D in sensory issues. I find her very sensitive to Adam and useful in the sense that Adam really wants to learn new skills now and she is doing a marvellous job with him - just one of those really good, intuitive teachers who has a little extra knowledge. Originally, the type of ABA, and later, VB we received was distasteful to me. All these so-called "experts" treated Adam as a pathology. No one seemed to understand that at 20 months of age, he needed to be happy, to play and understand the value of relationship. After I fired a bunch of "supervisors" Adam still learned skills all along the way because I believe that through his joy and learned ability to relate, he became able to express that he wanted to learn -- express his intrinsic motivation. Now, for things that are tougher and more demanding, I searched for a very skilled and sensitive person to join Laura (one of Adam's therapists) and the team to provide additional advice and training. Ms. Doc (I don't mean this is a deorgatory way -- she is a lovely person but I don't want to disclose her name for her sake), has said to me many times "stereotypy is Adam's enemy." I don't necessarily like to coin it this way myself. In a way, I can definitely see how Adam stops learning if he engages in too much self-stimulation (I'm talking during learning time here, not when a person needs to wind down). However, I still feel strongly, that "STIMS" can serve important functions, which is why I watch him carefully and question. Is this something that Adam needs to explore or this an obsession? The lines are never clear, nay, always shifting.

Last night, five of us were sitting at the dinner table. Adam was tired and we were all chatting away to each other until he said loudly and clearly "Quiet please!" in a firm but polite tone. Indeed we all quieted down and ate our dinner. (!!!!!!!!!!!)

Neurotypical Syndrome

I'm not meaning to frighten you, but I think I have something going on and it might raise doubts...I don't know...I hope I don't raise something that you find wrong in yourself too...I haven't wanted to speak of it, well, not until all of this diagnostic stuff came out. Well here goes:

I seem to be putting on facades. I mean, everyone expects that I act and be a certain way. They expect me to say nice things even when I'm not thinking nice things. I guess this is called social etiquette, and it really exhausts me. Nevertheless, I lie. Yes, that's right. I tell someone I like their hair when I really hate it. Or I say "no your'e not fat!" when it's darn sure that the person I said that to has put on a few. Or "nice to see you" when I really couldn't care if I saw you a hundred years from now. Lying to people is a number one symptom of Neurotypical Syndrome (NT). I read all about it today.

"Those with Neurtotypical Syndrome express a qualitative impairment in being alone as manifested by at least two of the following:

(a) lack of abilility in spending time in the company of oneself for a long duration;
(b) preoccupation with being with others, and social events."

Here's another one: I think I am superior. Yes, that's right. To anyone who cannot do as I do. In fact, there's no one as good as me. I believe this is called arrogance in the diagnostic criteria for NTS:

"(c) preoccupation with oneself, one's career, one's material and physical image;
(d) preoccupation with one's social status, fame and income. "

I do too many things and don't really focus on one. Instead of just focussing on one thing at a time, like I would like to do, I try to do too many things and it seems like I've got it all figured out, but I really don't. "Inability to focus intensively on one interest," is a definite symptom.

Judgement. I judge everyone. I judge based on whether you are like me or not like me. I expect everyone to blend together, to homogenize. If there is any difference, I become afraid and have to send that different person away. "Persistent intolerance of others," is another symptom.

I am highly impatient. I guess that's why I don't really think that hard about anything. It takes up too much time when I have to get my hair done. I thought about becoming a musician once, but eh, I just wanted to go to the clubs with my friends, instead. Not to mention impatient with others. I don't have time to listen to your bla bla!

I take things for granted. Um hum. Big time. I don't take time to "smell the flowers" or watch the rain fall... Who has time? I need to stand in line at Starbucks while I'm rushing to get to work!

It says in this manual I read today, that "the onset of Neurotypical Disorder is prior to three years of age....there is also a strong fascination for social belonging to the point of chronic lying...In most cases, there is an associated diagnosis of depression, substance-related disorders, sedative dependence, and other behavioural symptoms including inability to listen carefully to others, difficulty with empathy, and a deep fear of heterogeneity."

There were more symptoms in this manual I read ...I'm too upset to write them all down. You will have to look them up in the DSM. If you have more than three symptoms, I think that means you are lower functioning. If you have just one or two, there's more hope. I am in BIG trouble. I am not normal!!!

Dancing

"One two three four five six seven...basic, that's good. Now side to side, open....crossover. Turn in, comb, check, two turns, arm up...snap hand..." The music is rapid as reams of instructions fly at me like words dissipating into thin air...bla bla blee bla bla...

I can't THINK and dance. I have to FEEL the dance. Taking my first salsa lesson yesterday, my instructor said I accomplished two levels in one session. Somehow, I have the music in me and I can inutitively feel dance steps. But when broken down piece by piece, I think TOO much and my feet stumble. Give me the essence and give me the music, but translate dancing into words and I get all mixed up.

Adam enjoys "dancing." I hold him in my arms and make him extend his arm and hold my hand like a gentleman. "Da, de da, de da, de da..." Our version of the dance is mommy bobbing up and down the hallway with Adam in my arms. He enjoys the bobbing, and enjoys echoing the "da, de da, de da..." We do this a few times before I get winded --he's almost four and getting a little heavy.

I am still Adam's needed dance partner. We, as his teachers (he has a few), teach him how to feel things. In order to learn HOW to play, dance, put something together he still needs us to prompt him from behind (This is the best way to teach independent skills. If the child sees you prompting from in front, it is an extra step because you are now associated with the action. If prompted from behind, I can fade myself and my physical prompts faster. Adam gets the feel, faster). I do this from putting on socks...1st we put in the thumbs, 2nd we open the sock, 3rd we put the sock over our toes, and 4th we pull the sock on. I do a hand-over-hand prompt until the pull part. (He still has trouble opening a tight sock and putting it independently over his toes). I am "backward chaining" my teaching so that he gets each part of it on his own. His fine motor and bilateral skills are still a little weak, but coming along. Soon, I am sure he will show me just what he can do! But, if I just sat in front of Adam and recited instructions he would be peering out the window! In autism, the steps are broken down, but the tactile sense, the learning by doing, is the easiest way for him to "get it"...with lots of practise!

"Can't do it for myself. Can't do is as myself. Can't do it by myself." The words of Donna William's from her book Exposure Anxiety reverberate in my head pretty much all the time now. Everytime Adam walks away and observes from the periphery of an activity and needs to be nudged in, I think about how he needs the little push on his back to walk again. I think about the movie AWAKENINGS from Oliver Sack's novel, and remember the catatonic woman who rose from her chair because of the pattern on the floor. The pattern was the impetus, the fluidity, the guide to get her to the window. When the pattern stopped, so did she. When Adam stops in his tracks and watches like he is on his way to something, and then just stops for no apparent reason, I think of those similar examples. If prompting, a little nudge, gets him back into things, so be it. Hopefully, he will find his own way to nudge himself back into the world.

Today, Adam started a music class. There was no aide, no shadow, but a nice small group of five little children. There were some imaginative movements, and musical instruments. I was so proud of him and always want to keep him in some activities without an aide because I can see how he was watching the teacher, watching the children, joined in the circle independently, expressed some delayed imitation! (We can practise banging on the drum at the same time as everyone else at home -- coordinated activities also have to be practised). Most of all, he was gleaming again. When Adam gleams, everyone smiles. Adam is practising his skills on his own, and I think that he has to feel that he can do it without anyone else's help. Right now, he is beginning to and I don't always want to get in the way of that.

Between a Rock and a Hard Place

I run, with therapists, a facilitated playgroup at my home. It has been going very well -- a mix of kids with and without autism. But I have to admit, keeping the mix is getting harder.

Yesterday, a mom pulled her kid (autistic) without warning because there were other programs she enrolled him in -- she said. That really irked me -- not because people naturally move on, but because she did this without warning, so that the dynamic of the group is now affected.

I am also looking for a new therapist too...one of my leads is pregnant, and I'm finding it really hard finding a therapist with experience who is willing to work fifteen hours a week.

Running a home-based program, without agency support is rewarding, frustrating and terrifying some days, like all of Adam's progress and development is at stake because of what I do, or don't do for him. If I hire an agency here in Ontario, I don't receive adequate communication, (my team talks weekly, meets bi-weekly), and the therapists (the one's I've met), have been doing something that looks and talks like ABA, but it's not ABA.

I think most parents who use agencies, go to schools, or try to find play groups might also feel caught between a rock and a hard place. Speaking for myself, I feel we have to seep through the system, find a way to glide through the cracks, in order to get the services and education that Adam requires. Work with the system the best you can, I say to myself, and after that, do it yourself.

Today, tears well in my eyes about Adam's social world...he is just beginning to really observe and WANT to do what his peers are doing. This wouldn't have happened without our playgroup. And now, it seems to be falling apart. So I consider charging the $250.00 that the other Facilitated Play Groups here in Ontario charge. But how on earth will that attract the parents of kids without Autism? The whole thing seems screwed up and no matter how hard we try, this will stigmatize Adam.

Adam got his passport photo taken the other day. He obeyed the photographer, taking a step on to the stool, standing still, facing him. He gleamed a smile. One of the store clerks insisted strongly that Adam close his mouth (it was hardly open).

"Close your mouth!" Adam wiggled, still smiling.

"Close your mouth! They won't accept the photo like that. Close your mouth!" The stout little man with no hair pursed his lips. His angular features punctuating his words, and effeminate voice beginning to feel like steel wool on my skin.

Finally, I blurted, "it's hard for him...he has Autism." My gut sank. For all of my wishes to not label Adam, I labled him anyway. I suppose I could have just said, "it's difficult for him," without any further explanation. Yet, it was his utter lack of empathy, or obeservation, or assumption, that I found repulsive. This is the dilemma -- to not identify Adam in times of need (I'm not saying this was a time of need, but there will be other times), will not allow him any special acommodation or support he may need. To identify him (his label), will lock him out of other opportunities that may benefit him.

"Close your mouth!" shouted a number of times at Adam felt totally foreign, and I realized how difficult it will be for him for a while. Or maybe me.

Starry Night

Adam loves Vincent Van Gogh's Starry Night. Since he was three. Morgan, his of his art "instructor" (we do art -- I'm a curator, what can I say), brings cards with various paintings and they talk about them. Adam loves to label even the more abstract ones, telling me that he has a sense of representation (symbol recognition is another way to say that). Morgan thought it would be good to begin with the impressionists. But when she pulled out Starry Night on the floor, he twisted his body and peered at it from various angles -- something he did when he reamed off his letters and numbers that were on the floor at 11 months of age. I believe the sweeping, rough, and swirling short lines (thus adding to the feeling of movment) must actually move for Adam -- the undulating night sky quivers.

Then, I saw a preview for Little Einstein. Eureka! There it was...the Rocketship swooshes into Van Gogh's sky -- the swirling starry night. Needless to say, Adam stops dead in his tracks when that preview comes on. There is this aspect of Van Gogh's art that leads me to think that theories he was autistic might be true. He created areas of flat unbroken colour -- a revolutionary approach to art-making that was viewed as crude at the time. His stark figures are outlined with dark cloisonne line against flat backgrounds or busy patterened walls that nearly distract the eye from the subject. Or consider The Night Cafe, or The Yellow Room, with seemingly distorted (but logically true) perspective, and harsh disharmonies of colour. Van Gogh "could not be taught" and therefore, was a self-taught artist. Today, he would be classified in the "Outsider Art" genre. He was later plagued with seizures, unsettled relationships, and except for a short, tumultous stint with Gauguin, lived alone.

So I have to wonder: does Van Gogh's Starry Night appeal to my little Adam for the reason that they might share a similar perception? Adam has expanded (on his own) his repertoire of painting techniques -- studying the brush and using various sides of it, and lately, splaying the paint on the paper like Jackson Pollock. So I eagerly wait and see if he can represent his experiences on paper.

When my eyes get tired these days, the outer edges of objects begin to quiver (I've made an optometrist appointment). Instead of finding it annoying (which it can be), I stop and revel in another way of seeing things.

Decoding Perception

In my previous post, Body and Mind, I try to decode Adam's perceptions and experiences through the eyes of Tito Mukhopadhyay, autistic author of several books including The Mind Tree.

This is all about understanding autism and decoding perception -- someone else's. In Adam's early years I watch him curiously, learning from others how he might be experiencing his environment. But even these clues from Tito are not necessarily Adam's experiences.

Autism as "mystery" is at the heart of our fascination. Science thinks it can solve the "mysteries" of the brain. In 1977, Noam Chomsky was not optimistic about the future of brain research. He said: "It may very well be that, among the theories we are unable to attain by our biological endowment, there is included the theory of mind...it will appear that human beings have mystical, unintelligible properties because we, as biological organisms, will not have within our range the theory that would, in fact, explain it."

Each scientific community -- neurology, psychology and so on have so many of their own theories about the brain, and yet even today, all of it still remains pretty much a mystery. Autism can be viewed as the embodiment of this metaphor. We are fascinated by autism for what it shows us we can be (ability) for as much as what is different. The idiosyncratic language, the sensory issues (which seem to be an oversensitivity and heightened awareness of the environment), to non-verbal intelligence...our society is curious to know how we tick -- and autism is a part of this search. We are similarly interested in a stroke victim's ability to adapt -- using different parts of the brain to relearn speech is a good example. A real mystery is also that -- human adaptability. Perception is elusive. Yet, it is all we have -- seeing how an artist views the world can shed light on how we view it -- it can make our world, our perceptions more three-dimensional.

What is perception? Is it a visual world? Is it something that happens to us? Is it tactile? Certainly, perception is different for all of us... the blind perceive and experience the world differently from those who are not. The way they describe their perceptions is not at all the way I might describe the same experience. Perception is the biological as well as the psychological, and as much as biology takes a part in autistic perception, the psychological and enivironmental factors also take a role. In addition, there seems to be some universal perceptual consensus -- for example, we all agree what "red" looks like so we,for the most part, have a universal perceptual language. Do we feel red the same way? The experience, and language is different for a blind person who has never seen red, but who may interpret red. That said, a colour-blind person also has no concept of that visual language. A full understanding of the mind is intangible. We may be able to plot physical and chemical events that an object triggers in the retina and in the perceptual centre of the brain, but will detailed knowledge of which nerves fire and the patterns of nerve activity ever adequately describe the experience of seeing the object?"

I consider Autism and human evolution -- a language distilled, that is, a different language, non-verbal, visual, musical, mathematical -- a language without words. I've heard of speculations that human language will evolve from verbal language to a sort-of computer movement language -- highly visual. How have computers even altered the way we think and the way we communicate today? Perhaps that language is easier to comprehend for those with autism?

Adam went to the dentist a couple of days ago. It was not pretty. He's been pretty good so far, but for whatever reason, the dentist, before showing his face to Adam, went right into his mouth from behind, holding his head down with his arm while his purple-gloved hands pried Adam's mouth open. Adam was terrified, I think, because of this. It is like when Henry approaches him from the rear to put on a shirt with a narrow hole and Adam can't see for a couple of moments...not only could he not see Henry coming from behind, but all of a sudden, he is blinded and confined by the hole -- and again, he is terrified. Trying to put the pieces together, I am presuming that Adam is highly visual and anything that impairs this skill that he has come to over-rely on, is exceptionally scarry. If all of a sudden I lost my sight, I would be afraid. If I lost the feeling of my legs, I would be terrified. We come to rely on our strenghs. Adam's strength is his sight -- but what of his perception? This is what I'm always wondering about -- what does Adam see that I cannot understand? Is this sense like looking through a thick lense -- blurred and images melded together? Or his his sense so sharp and lucid -- that the sharpness of colour and line can be painful? I would like to look through this lense one day. The closest I've come is through art. For me, it is the unviersal non-verbal language. Or music. Right now, Adam does not verbally offer many clues, so what I do is decode his behaviour. Like the curator of art that I once was, I decode perception.

Body and Mind

I think about the times when I live just in my head -- I can sit for days and read, and write -- making unconscious trips to the kitchen for yet another coffee with too much sugar. A month or two of this can pass until I decide it might be a good idea to reconnect with my body in a yoga class or two. While goading my limbs to "enter a pose" just a little further between grunts I realize my body is trying to connect with my mind -- trying to just let go in blissful symbiosis. I am shocked at the huge disconnect between my body and mind and wonder where I've been.

I try to give this feeble analogy in an attempt to understand what it might feel like for those with autism -- where body awareness is not altogether intact. I struggle to understand a lack of body awareness that otherwise comes so naturally to me.

Tito Mukhopadhyay states that no one autistic person can follow a command if they are not aware that they have a body. In autism, this disconnect seems to be magnified -- of "not knowing where my knee is, if I even have a knee, when my instructor demands `touch your knee.'" I considered his responses to Biklen's questions and reflected upon Adam's life:

"Am I made of thoughts or am I made of my body? I usually experience either, one at a time. I had to shut my eyes on the road because the whole road seemed to become so alive, although my logic told me that it could not be so. Only when my mother took me to some other lane, could I open my eyes...I had to learn about my body, because I could not feel the pain, or realize it, till I was taught. So without knowing anything about the body, how could I apply parts to do different activities, which people do? So when someone asks you to do something manually, I get clumsy. You have to map yourself, map the part of the body you are going to use and time it up, because someone is waiting for you to complete the task. You know that your intelligence or stupidity would get measured by that performance of yours." (p.122 Biklen)

I think of all the times Adam squints his eyes. I have always called him a "visual" child, he can read, decode, and his primary stims (self-stimulatory behaviour) are visual ones. But now I consider that he is also shutting his eyes to feel the world, for to see it is just too much information, thereby making the world too overwhelming to feel and comprehend. I also consider all those standarized testing situations that have evaluated Adam's performance without considering the difficulty of body awareness.

"Games can get awfully puzzling. Exercising can work better because you are sure what you are supposed to do. Limited boundaries of movement can save a lot of strain."

I think of all the activities that should be close-ended and structured so that Adam can learn to become competent, and later, more fluid in other settings. The speed of play in a children's playground is still too much for Adam. He observes, I feel he is trying to join, but he doesn't know HOW to join or what to do. If the game was close-ended and more structured, we could teach Adam how to join in play and he could feel more competent and happy with himself, thus enjoying the experience.

On the association of Mental Retardation and Autism:

"It is the most disgraceful label which the term Autism is associated with. Yes, some areas remain less developed because of a lack of associating the mind with the body and environment. I had been labeled as mentally retarded when I had my first encounter with the psychologist. I was three years old then. I was not able to apply my knowledge although I could understand perfectly what was being asked....I do not blame the psychologist. Seeing is believing [bold mine]. They should begin with the attitude that the client is understanding him and not wonder where to start or what to start. Start with anything. And grow around that anything. Talk with an easy tone because the client is not hearing impaired. Trust that the client is capable of understanding. And then `Carry on.'"

I think of all the myths about autism as a parent I try to diffuse -- the myth that 2/3 of the autistic population is mentally retarded, the myth of low functioning autism and high functioning autism -- the view that LFA renders that person "less" human or intelligent or for that matter, capable. It really just is about the amount of obstacles we have to learning -- some have more, some have less.

"It took me many years to realize that I have a body. I think that is not becuase of my preoccupation with other thoughts. I was totally aware of sounds and colours, which my senses picked up for me...Even this day sometimes I feel that I am walking without legs...Many Autistic people need to be helped because of this reason. How can they perform a task using hands if they just cannot feel them? And without any feeling how should they have control over them?...as I grew up and started my mirror gazing, I became more aware of my looks and size. I had a favourite bed sheet which I loved to wrap around my body so that I could enjoy it....When I learnt that a swing was not anything which could kill you, I started using it a great deal. Half my school hours are spent on the swing. I enjoy climbing up a staircase also becuase the gravity acts on my body as I apply myself against it. Escalators are wonderful as I can be sure of getting the feeling of my body gradually. At home a little rocking and spinning also helps. Thank god mother doesn't stop me." (p.138)

This tells me the importance of Occupational Therapy in Adam's life -- his need to experience and feel his body as an essential component to completing the simplest tasks to problem solving. It tells us that spinning isn't a "behaviour" that needs to be "extinguished," but an essential need for the person autistic to KNOW themselves, to feel alive. Providing for this makes the world easier to understand and easier to join. The goal for Adam is...SELF AWARENESS.

"To think about it, I recall that I learnt every skill through touch method. I have a problem imitating any movement by looking at people performing or mapping my body accordingly to the instructions given to me...I am stressing on how to do and not what to do because no one should have the impression that I did not know what to do. Different skills need different time to practise depending on the feeling of awareness of that part of the body. Sometimes I feel my legs better than the hands. But I needed my mother's help to learn the tricycle. She had to manually push my legs because I could not do the movement. It needed some practise before I could ride it independently." (p.138)

I am always doing this with Adam. I am pushing and squeezing his legs so he can FEEL them -- in hopes that he will eventually correlate the feeling to the action in his own mind. He has peddeled independently a few times now...but I expect it to be a few more months because it's not something we practise intensively. I also believe that we should teach in the easiest possible manner for the learner -- we want learning to be as fluid as possible. Adam is a kinesthetic learner -- learning by doing. If he needs me to nudge him from behind, some hand over hand -- whatever it takes to get him started and eventually independent, is the right way to teach.

"Life can become very boring for an Autistic person if he does not learn how to play -- touch is always a big help when an activity is new for me. Only through practise and gradual fading of the touch the activity can be done independently."

It's what I always tell people...Autism is not NOT KNOWING, it is not knowing HOW. We teach Adam HOW to do everything. A lot of times, he can generalize himself afterwards. He is lucky in this regard.


"I could not point at objects for many reasons. The most important reason is that I had very little sensation of my body.So the technique of moving my right handed needed control over the ball and socket joint of the shoulder and then hinge joint of my elbow and finally fold the other fingers and keep the point finger out...It is an essential skill because I can go to a shop [now] and point out exactly what I want. I can point to my forehead and show the doctor exactly where I had got the knock because he should not end up treating my nose." (p.133)

Although Adam is verbal, this is still an important skills for intention. "Show me" skills are important -- even if he can't find the word. He is okay at pointing to concrete objects close up. We have to work on those things that are further away. I like how Tito describes all the steps that one simple point requires. It illuminates the laborious steps to be learned for an Autistic person.

"Exposure to variations be it clothes or food, place or timetable, help us to, if not love, but to tolerate and understand our role in situations better." (p. 141)

I've mentioned it before in this blog. If this is one thing we learned early if even by default, is to expose Adam to EVERYTHING. His life, aside from his special training at home, is no different than any other child's. He goes to regular school, he has a playgroup, he goes to the Ice Capades, children's performances, the art gallery, and travels on planes. He is flexible and enjoys the novelty.

"Many Autistic people try to cut away the various inputs of sounds by producing their own convenient sounds so that the other sounds get to the background and the sound which he is making gets all the attention and concentration. He should not get away with that because it would lead him to nowhere other than get entangled in its own intoxicating effect leading him to get deeper trapped in the obesessive nature of that sound....That can make his life miserable."

Adam babbles a lot. I use Tito's suggestion intuitively -- of turning on the radio, or changing the environment to bring Adam back to the world. I have to be careful, though. His articulation is sometimes off, and I try to recognize when he's actually trying to say a full sentence. If it's repetitive, I can usually tell that its self-preservation.

"Mother asked me what I would like to do next, or what I shall like to have for dinner...Later in life I had faced similar questions about my likes and preferences. I kept myself prepared by finding a more honest answer before telling somebody that I liked something. I have seen people asking other Autistic people, showing two objects and inquiring whether they would have this or that. And the Autistic person randomly replies this or that. Nobody answers "both," although some may not mind having both. When the prospect of an answer is so narrow and the tendency to escape is more, how could the person grow and organize his reasons? So although it is difficult to face an open question, it should be introduced. Escapism is the doom for any development."

Here I think of the perils of Verbal Behaviour methods. We have stumbled into the same roadblocks with Adam, trying to introduce "choice" questions. Instructors (thankfully not mine -- Adam has a great therapist named Laura) can get so lost and wrapped up in their goal for the lesson (child to make a clear choice from two objects), that they can forget that the child may want neither or both and the lesson hasn't been set up for that possibility. It might be better to enable Adam by using textual and pictoral choice boards, so that he understands that he is free to express himself, rather than just meet an "expectation." We also have to be open to his own responses, the ones we don't expect.

"There are many approaches to a question. `What is this?' is a very rudiemntary approach to communication. When my speech therapist asked me `What is this?' and tried to get an answer out of me by telling me more than half the answer that `this is a _____' he forgot that I had already authored more than a hundred poems by then and two of them were already published. Naturally, I did not like this two-year-old treatment just because he had the advantage of speech. I could have started my answer when he was showing me a picture of the cat like this ---

Call me a cat
Or call me a feline
Call me any name
I shall haunt
Your doors at night
Now, then and again.

That would be an open-ended response to any question rather than restricting the wonderful prospect of answering with a sentence like `this is a ___.' My ego is always important matter to me." (p.136)

Self-awareness, ego, self-mastery, competence. These are the ultimate goals for helping our children. This is the GRAIL. And it is attainable.

CONNECTION ALERT!

An eight year old boy wanders in the room with toys and then beelines towards Cranium.

"Would you like me to play that with you?" asks the therapist.

"I most certainly would," replies the boy unpacking the box on an opposite table to her. His hair is cut in a kind-of mohawk, sticking up at the crown like ostrich plume. His face is changing, even I can tell...he is slowly losing his cherub cheeks and soon he will look like a teenager. Our eyes meet for an instant. I sit furtively, pretending to read my book.

"First, we're going to talk about our engines."

"Okay...I'm with you," he replies sprightly.

"Can you please come over here and sit in the chair?" He sits on a tricycle next to the chair.

"I need you to sit here in the chair." After some shuffling, he sits.

"How are you feeling about Cranium?"

"Excited."

"Right, excited. And how fast is your engine running, too fast or too slow?"

"Too fast."

"But that's okay because you are excited."

"Right."

"Tell me something that makes you feel sad."

"CONNECTION ALERT!" he blurts.

"Can you show me something that makes you sad?" The therpaist has the boy enact a number of scenarios that arouse different emotional states in him. When he doesn't quite know an answer (I am guessing here), when something doesn't make sense to him, or if something makes all too much sense -- perhaps too arousing to mention -- he blurts "CONNECTION ALERT!"

What a strategy! I am thinking of all the times that I get stumped, confused, over-emotional and I try to cover it up and be cool. How many of us do things we don't really want to do, particularly in the social realm, or act one way when we feel another? If I could yell "CONNECTION ALERT!" every time I stumbled inside, maybe people would understand me and leave well enough alone.

The therapist, for the purposes of teaching emotional/self regulation and emotion recognition in tandem with pretend scenarious (brilliantly taught, I might add),didn't acknowledge his connection alerts, but rather, kept probing him on how he was feeling in that moment to get him to recognize himself. By recognizing our emotional states, we can self-regulate. Further, we can become self-aware.

Emotional/self regulation is one of the challenges in autism. Michael Moon, a musician/composer/presenter/astrologist with autism, presented at The Muki Baum Centre last Thursday night in Toronto. Michael is 38 years old and notes that it wasn't until he learned he had autism that he could begin to become self-aware and in control of his future. For the purposes of not wanting to label him, his mother, who was present, eshewed the system (i.e.; believing that he could do anything) and didn't tell Michael of his autism. But he states that his learning about it enabled him to understand himself and overcome the obstacles that confronted him in life.

It seems to me that the people I've read and met with autism get really good at understanding what makes us all tick. If you had a challenge in an area and were compelled to learn everything about it, then you would likely become so proficient at it. This is how I'm feeling about everyone I've mentioned in my blog thus far. People with autism can, in fact, understand what it means to be human perhaps better than "the rest" of us.

I Know What I Want and Want What I Know

To know what we want, or think we know what we want is largely based on what we know. It isn't any different for someone with autism.

Adam asked for eggs for breakfast. "Eggs!" he blurted, checking out the kitchen counter. All by himself. He didn't see an egg, he asked for one. I made him one (he is into them sunny side up). He devoured it. He saw it a few times before and asked for it.

I am lucky that at the first sign of Adam's fussiness over food, I offered different types of food. He got used to various textures early on because I didn't give him any choice but to try different things. I admit it wasn't always easy. Today, Adam sometimes grows curious at what I am eating. A couple of months ago, he saw me eating an egg sunny-side up and he wanted a try....he ended up eating the whole egg! Pretty awesome for a guy who cringed at jiggly, slimy things.

Jonathan Lerman began to draw suddenly at the age of ten -- completely non-verbal at that time, no one understood or even realized that Jonathan had a rich "inner life." At an afterschool program, he had a serendipidous date with a piece of charcoal and paper and he began to draw -- not crude backgrounds and stick figures, but sophisticated renditions of faces. One major message his parents give to others is "expose your [autistic] child to everything because you never know what's going to happen."

There is a fundamental message here -- do not coop Adam up in special schools, do not isolate him because it might be hard [on me], and expose him to every opportunity because I MUST ASSUME THAT HE IS COMPETENT. Further, it is known that "learning by doing" as opposed to ONLY sitting at a table is really the most efficient and successful way to learn for many people labeled autistic (their account, not mine -- read Sue Rubin on kinesthetic learning). As a mom, I can see that Adam definitely benefits by generalizing skills as a first option to teaching, not after spending hours at a table. I know that every person must learn differently, but if we stand by the belief that our children are competent, then we must approach teaching this way. Constantly practising skills makes Adam's learning more successful in a setting and yes, sometimes they have to be taught "in isolation" if a particular skill requires extra attention.

I don't think I know very much -- like most of us, I haven't experienced, yet, everything I've wanted to. In fact, I cringe at how little I know -- how there is so much more to read and so much more to learn from others. I am a product of my upbrining, my standard of living, and what I expose myself to daily. I went to a salsa lesson yesterday and saw a whole new world of people taking the night to enjoy a couple of hours of merengue with each other -- wow -- what am I missing?! There is a whole other subculture here. Anyway, my simple point is this: we are the sum of our experiences and it is imperative to provide our children with as many as we can offer.

Paul Collins in his book Not Even Wrong: Adventures in Autism (another great one I highly recommend), is where I first learned of "The Wild Boy," later named Peter. He begins his book with this story and as an historian mirrors his studies against the development of his own son with autism. He notes that Peter was first found as a creature in the Black Forest lurking on the riverbank in 1725. Among the forest "was the rarest of wild animals: a human." It is a story of this young boy, with autistic traits who had run away -- left to his own devices in the wilderness. When he was found, he was summoned to London, dressed to meet aristocracy. He was brought to civilzation although he spent years learning to adapt like other animals, was taught new skills which he learned to a certain extent: "The wild boy who had been living in the trees just months before was to receive the finest education in the land... Many years later, Peter had run away and was picked up in Norwich:

"Who are you?"
"Wild man."
"Where are you found?"
"Hanover."
"Who is your father?"
"King George."
"What is your name?"
"Pe-ter."
A dog was pointed at.
"What is that?"
"Bow wow."
He was then asked to name the family horse.
"Cuckow."

He understand everything he hears, the mistress assured...And he could sing too: he loved songs and would rattle his collar tag in joy when music was played...when the song was over and the cathechism of simple questions exhausted, the [now] old man would fall silent and would not say anything more. (Paul Collins pp. 44-45).

The wild boy couldn't be entirely taken out of Peter, but it is obvious that he was "tamed," or civilized to a certain extent that as an old man, he could answer these questions.


P.S. Tabula Rasa: A phrase (meaning blank writing tablet) from the Latin translation of Aristotle's De anima. It does not occur in Locke's Essay (1690), though it is present in Pierre Coste's French translation (1700). The Essay, in its statement of the empiricist these that there is nothing in the mind that was not previously in the senses, speaks rather of the mind at birth as `white paper' awaiting ideas from experience. (from Oxford Companion to Philosophy edited by Ted Honderich)

P.S.S. Thanks to everyone's intelligent and inquisitive comments and posts. It gets us all thinking!!

The Importance of Presuming Competence

Biklen, from who I borrowed the title for this post, sums it up in that sentence -- how important it is for us to assume that ALL autistic people are competent and intelligent. I've written it before and I will keep writing it.

I believe that to coin autism in any negative sense is not our perogative -- it is the right of those with autism to tell us like it is, not for us to interpret their behaviour ("behavioural deficits") or presume that typical responses are the only or right responses. I believe that the decisions to be made on what should be done in the research and therapeutic fields should be determined by those with autism. Reading the stories of Richard Attfield, Sue Rubin, Donna Williams, Temple Grandin, Stephen Shore, Lucy Blackthorn and many others for the exhibit I put together of Jonathan Lerman (I prepared an exhibit upstairs titled "The Voices of Autism" with floating quotes from those labelled with autism), has only made my opinions more resolute.

As organizations, teachers, fundraisers and parents, we MUST make way for these accounts. We must provide supports (determined by those with autism who decide what supports they need) to enable people with autism live successful lives. As I presented in previous posts, the success of the person classified autistic lies in our supports, our school systems. If our organizations for autism only present in terms that make autism sound TERMINAL (cures should be sought for cancer, not necssarily for autism), this will effect the way people think about the people labeled with it -- without hope. I believe that the act of advocating the rights of our children is a priority in this "journey."

"In its simplest articulation, presuming competence means that the outsider regards the person labeld autistic as a thinking, feeling person. This is precisely the stance that every educator must take -- failing to adopt this posture, the teacher would forever doubt whether to try to educate at all, and would likely be quick to give up the effort. Aside from the optimisim it implies, another benefit of presuming competence framework over a deficit orientation -- where particular levels of incompetence (e.g., belief that the person is incapable of learning to read or lacks the ability to appreciate other people's perspectives) are presumed -- is that when a student does not reveal the competence a teacher expects, the teacher is required to turn inward and ask, "What other approach can I try?" (Biklen, p. 73)

Of all the stories I've read, it is interesting to note that so-called "behavioural deficits" have been often identified as the result of anger and frustration on the part of the person labeled autistic -- sometimes also being misunderstood by others who have preconceived notions of what it means to be normal, thereby silently, or perhaps not so silently, passing judgement on them. Richard Attfield notes that he cannot perform for such people. I know that Adam will not perform for such people.

The people with autism who feel "successful" labled "low-functioning" in their childhoods, were the ones whose parents believed in them and worked with them. Biklen was asked "What percentage of people with autism can be expected to achieve the communication abilities of Albert Frugone or Richard Attfield or Lucy Blackman has achieved?" He suggests "that the percentage is likely to be a reflection of context. How many have parents -- in the main this has been mothers -- who can contribute huge amounts of time and energy to their education? How many have access to academic school cirricula? How many enjoy access to communication training and hundreds of hours or practise? It is likely not insignificant that [the aformentioned -- Frugone and so on], all had mothers who devoted themselves to providing intense instruction and who interceded with schools to see that they received academic content even when social policy and prevailing professional and social doctrine and attitudes discouraged it." (p.67)

This is not a profitable stance nor does it relieve parental guilt of never feeling like we're doing enough for our children. But it seems to be true. I know many mothers who sacrafice their time and their work in order to study and teach for the sake of helping our kids. I'm not taking a Bettleheim stance here, but intensive practise and advocacy and working with curriculae is an everyday job of the parent with a child labeled autistic.

P.S. Will the scientific community ever buy the "nurture" argument?

Dr. Phil's "Extreme Disorders"

Please go to side and click on Autism Edges blog for a review of Dr. Phil's good ol' Hollywood style. Unfortunately, I didn't get to see the show, but am concerned about this sensationalist approaches to autism...who says disability doesn't pay? Dr. Phil is making loads!

Fortunately, a CTV program here in Canada called Vicki Gabereau interviewed Temple Grandin and the mother/author of Artism. It was inquisitive and intelligent.

Small Talk

Language, spoken that is, seems to be the sine qua non of early childhood development, THE benchmark of whether a child is developing "normally" or not. Perhaps we depend on it more than we realize, and without being able to express oneself verbally is clearly a disadvantage in a verbose society.

Today, I think about how urgently we are trying to get Adam to SPEAK. How we seem to only measure his comprehension and his aquisition through his verbal responses. It is clearly difficult for Adam to talk. He is encouraged moreso by cues -- if I start the sentence and he can fill in the word (intraverbal), if (when I must) sound out the first letter of the expected response. At other times and unexpected conditions, he talks completely on his own for things he sees or wants..."I see a bus!" or "I'm hungry!," among others. If I was a pessimisitic parent, I might grieve over the lack of reciprocal conversation at this early stage, when other children might be speaking in more complex sentences, and comprehending more of my spoken language.

Here's an example of how I talk to Adam right now, when I'm asking (expecting) a response:


Me: Where are we going Adam? We're going to ....school?
Adam: School
Me: Where are we going?
Adam: School
Me: That's right.

Me: Adam when you make a poo poo we go to the ....bathroom?
Adam: Bathroom
Me: Where?
Adam: Bathroom
Me: Good job, when we make poo poo, we go to the bathroom.

Then, there are easier concepts:

Me: What do you want Adam?
Adam: Chips
Me: Okay...here's your chip.

Other fluent Adam-mands are:

Hungry! Snack!
Squish
Turn it on!
Open Door!
Happy!
Tired!
Sleepy!
Water!
On the Potty!
Come!


Lately, I've been teaching Adam to read full sentences out loud with great success. He picks the right cards that go with the right match, then he reads the full sentence while pointing to the words using his index finger.

"The bird is blue," and so on. I'm not sure if he's going to chunk colours with the is, but it's worth a try.

I guess one could say this is the ultimate small talk. Right now, Adam is not conversing with me about all kinds of things fluently. But here's something that happened last night:

I was on the bed reading for a while. Adam came over and pulled me to his magnadoodle. He said to me "draw!" so I wrote the word draw, as this is what he usually loves -- me writing the words he says. Then he told me to write down the following words on his own (i.e.; absolutely no prompting!)
Jump
Tickle
Eat

As the proverbial interpreter, I was thinking he was telling me of the things he liked. Then, he grabbed the pen and began to draw. He starts his drawing the same way an airplane draws and airplane in the sky with its fumes (from one of his Baby Einstein videos). It's an exact replica until his hand doesn't know when to stop. When he was finished his drawing, he took my hand and said "Airplane!" So I assumed he drew and airplane, was telling me it was an airplane, so I wrote AIRPLANE down. When that was finished, he drew another picture. When it was finished, he took my hand again and said "Sailboat!" so I wrote it down. He did it again -- another new drawing -- "Motorboat!"...It stopped after that. Adam is learning about airplanes and boats in school right now. I found it interesting that he could draw a representation (his own) and tell me what it was supposed to represent and, that he was taking in what he was learning in school. Symbolic thought? I THINK SO! See -- so much is flawed with this mind-blindness theory.

Adam knows so much that he can't tell us. It is unfair to judge a person with autism as cognitively delayed. What is deficient is the typical way of responding. We do not know what Adam knows and comprehends unless he can show or tell us in some way. Here is a quote from Richard Attfield (autistic) taken from Biklen's book (I know - I'm still reading him...):

All my life I have been considered stupid. I understand that autistic people are intelligent and if you people admitted that you cannot understand us then perhaps we could try in a way to understand each other as fellow human beings. I get so frustrated in this useless body. If you just expressed some understanding and treated me as an intelligent person I could try to talk to you instead of feeling frightened to express and opinion. I know that I am intelligent...will you ever take what I say seriously? (p.58)

Lucy Blackman, author of Lucy's Story (also recounts her own story about being autistic), indicates like in the other stories, that there is profound awareness in the world "Most people need proof [of the student's competence]. How can the disabled meet such a gauntlet?" Isn't this what I, we, are after? Proof that Adam knows? And if we impose standard ways of measuring that, aren't we setting him up for failure? Lucy notes that she is able to attend school because she is allowed to pace up and down the hall when she needs to assimilate information. As an aside, she also notes that walking away from a conversation may reflect excitement or a desire to manage excitment, not an indifference to conversation. (Biklen). We forget to realize that also, certain conditions affect whether an autistic person can respond or "perform." We have to figure out for our children the most fluid path to be able to respond to what we are trying to teach. This is SUPPORT. With support, we feel empowered, we can perform, we can feel worthy and HUMAN> What the autistic person needs is our TIME. They need time to process in order to respond...one of the major issues I am learning is that once they are able to respond, we have already long left.

I believe writing will be an avenue Adam will be able to take. Since he reads already...(still need to teach him what words mean) -- it is a strength he will likely use for the rest of his life. I have purchased a toddler keyboard and mouse, and will teach him how to use it. My only present concern is making activities structured and close-ended so that he will stick with it before he gets frustrated.

I think of watching one of Brigit Taylor's presentations at New Haven conference held here in Toronto about a year and a half ago. She was dealing with social scripting. I remember feeling appauled at watching kids look at a list of questions,then being taught how to use their fingers to remind themselves of question one, two and so forth without the paper. Today, I see how I teach Adam scripts all the time. We practise hello, bye-bye, play, and all kinds of things every day. I see the value of scripts today now that I understand that I am not teaching Adam to ACT human. He IS HUMAN, with the same feelings as you and I. He is only challenged in this area, at this point in time (I don't know what the future holds). I think it is this fact,however, that teachers and parents either may forget or ignore the capabilities of children with autism.

I do not particularly enjoy walking into a cocktail party making small talk -- the weather, the presentation, the drive, the holidays -- but I'm definitely learning the value that we, as social animals, place on it. For the person with autism, cocktail parties and crowds seem to be the number-one stressor. While it is unnerving for many of us, it seems to be a hundred times moreso for people like my son. Small talk is the entry point -- do I want to get to know this person or not? There is a lot at stake with small talk.

Einstein Dreamed About Riding on a Beam of Light

This picture was taken when Adam was fourteen months old:

His little legs barely steady, he walks over to a toy truck, turns it over resolutely, and begins to spin the wheels with his index finger.

“He’s checking out the properties of things,” I imagine. “What a smart little guy.”

He plunks his diapered bottom to the ground and continues spinning one wheel religiously. “Vroom,” I say, scuttling to him on my knees. “The car goes vroom, like this.” Just when I take it to show him how to drive the car on the floor, he leans his hands to the floor before standing. He moves away from me to the corner of the L-shaped couch.

“Come play, Adam. Come play with the car,” I plead, holding it out and returning to my demonstration. Adam stares beyond me and resumes running back and forth, crashing into the couch.

“What about these Adam, look!” He continues to ignore me, running back and forth. “Oooo, look at this, so cool!” I try emphatically holding up blocks to invite him to build a tower. “Look how high it is.” It seems to grab his attention now so he comes over and bangs it down.

“Come build a T-O-W-E-R!” I model and begin again, stacking one block over the other slowly.

End of picture show.

Will Adam will be able to do something special with his life? I believe this is a secret wish of all parents. As he peers out the window with his transparent-coloured blocks, observing intensely at the age of 3 how the outside can be red, yellow or blue, or as he flips through the pages of his book of planets and reads Mars, Jupiter and Pluto, I begin to wonder what autism is, how Adam sees the world wrapped in autism-speculated legends of Mozart, Einstein, Wittgenstein, Mozart, Jefferson or even contemporary artists like Jonathan Lerman, who, with autism, began drawing suddenly at the age of ten. Just what do these stories have to lend to the average Joe with autism? What light might this shed on the autistic mind, and are the gifted just different from the rest of us, with autism or not?

I know that many are skeptical about diagnosing the dead. Michael Fitzgerald, Ph.D., Deidre Loveky, Ph.D., and others insist there is enough (reams, in fact) of biographical data to make reasonable assessments about historic figure and AS and HFA (Autism and High Functioning Autism – terms used commonly in this context so I will keep using them here for the sake of this argument). I have to speculate that diagnosing the dead is as perilous as diagnosing children today – we have the guidelines – but as the landscape of autism is constantly evolving for our kids as the years pass, as people grow and change, as standardized tests and assessments serve to label and perhaps create more conditions, well, I think, speaking from an art-historian’s point of view, we can make fair judgments based on historical data, albeit never conclusive. We can fairly determine the nature of a person and frame their image as good as any portraitist in a particular point in time, as well as any DSM (Diagnostic Statistical Manual of Mental Disorders)-- whatever edition. We know about Van Gogh’s life from his letters to Theo and Paul Gaugin and others. We can appreciate his art as much as for his way of making it as for his psychosis’ – now thought of to also be autism.

Fitzgerald argues that giftedness is anyone who changes the way we previously view things, who offers a change from the way we’ve studied, perceived something in the past. He believes that giftedness can only exist for AS or HFA people, and not LFA (low-funcntioning autism), and excludes precocious skills from giftedness – such as musical ability, for example. Simply put, an exceptional piano player wouldn’t fit the bill for giftedness in Fitzgerald’s definition. To fit it, this person would have to be an exceptional composer. To him, there is a difference between ability and changing the world, or at least the way we view the world. He has set the standards high, and perhaps that’s a good thing.

Einstein developed the theory of relativity at the tender age of sixteen but how long was he thinking about it before then? Did he spend his days watching the air move and dust particles dancing in the air at the tender ages of two and three? We know that his speech was profoundly delayed. We learn in his later childhood years of his lack of affect and socialability, intense focus, awkwardness, his poor performance on tests. But we can never see his earliest years, the years of toddlerhood, when we, at this point in time, place our children under the autism microscope.

Little Drummer Boy

If a man does not keep pace with his companions, perhaps it is because he hears a different drummer. Let him stop the music which he hears, however, measured far away. --- Henry David Thoreau, Walden, Conclusion.


So my little drummer boy is still trying the potty -- he is a willful little one. I am thinking about all this motivation stuff -- extrinisic and intrinisic motivations of the autistic person. I do believe we all need our trophies and ribbons, but in the case of Adam, his competency seems to be the Holy Grail (or is it mine?). External motivators, or reinforcers have to be used oh so carefully and faded as quickly as possible. I know Adam needs to be pushed now, at this stage. We can try. We can see.

I think of motivation and the person with autism. Maybe being with us, or what we do, or what we think is "normal," just isn't that interesting. So, just what is rewarding?

First Category, Survival:

1. Food
2. Water
3. Shelter and Warmth
4. Love (people)

Second Category, things that lead us to first category:

1. That which comes easily;
2. That which feels good (pleasure which is sensory);
3. That which we get lauded for (fame);
4. That which buys us what we need or want (fortune);

In Adam's case, in an environment where much of the above is already provided for, what he finds motivating is:

1. Sensory Play
2. Food
3. Running Outside
4. Balloons and Bubbles
5. Swinging
6. Praise
7. Independence (competence -- ability to play and do things without having to ask for help)


It is the last point that I'm really noticing and for what I believe he will be willing to learn our way - no matter what else tries to pull him away. We can help him with those things by providing temporary ways to get his attention. On other days, the things he does on his own and that we try to interpret (his "behaviours") give him so much pleasure. We can look at that as negative by stating that these activities suck him away. Donna Williams seems to describe it as such. Yet, I will never forget the lines she wrote in Somebody Somewhere, when she rented a house and she was lying in the grass describing the environment -- the breeze, the trees, probably the way the air moved...she was lost in the world around her...THIS world, our world, perhaps her world, in a state of rapture.

I sit here in icy-cold Toronto. There is freezing rain beginning to come down, trapping me in the house this grey upon grey day...layered so thick now I hardly want to open my eyes. I rather dream about Donna's world under the trees. I believe most of us dream about such moments of losing ourselves and becoming larger.

Carry on, my little drummer boy. I consider this journey between you and me as somewhere between two worlds, both yours and mine.

Intuition Precedes Science

Reading about autism can both help and hinder me. Two years ago, when Adam was initially diagnosed with autism, I began reading the typical stuff -- Catherine Maurice and then moved on to so-called "experts" -- scientists, academics. I have a Masters Degree in Fine Art History -- I am a wannabe to a certain extent. Yet, when it comes to Adam, and I'm sure many parents will relate to this, I just KNOW. It's not that I know what to know, but I feel and have always felt at odds with the many elusive theories out there about autism. And so, two years have gone by and I realize that it is not my son that wears me down on the days "the cup is half empty," but rather, all those "experts" out there whose egos come before our children, who must push their theories without ever having given birth to, or raised a so-called "autistic" child. Worse, autism as metaphor (Biklen) has permeated clinical and educational consciousness to such an extent, that our kids do not even have a fair start out the gates. They are doomed before they begin. Parents who are not inclined to trust themselves, to read, to question, who believe in clinicians and their assessments that set our kids up for failure at the get go, feel overwhelmed and depressed.

I've never had a great love of science. I believe science must be rigorous and I wish academic egos could go in the garbage where they belong. (Read The Behaviour Analyst journal for some of the most hilarious studies I've ever read like "How to introduce new foods to autistic children" -- gosh golly, ever asked a mother? And all of this gets funded, people!!). Foregoing the obvious fact that nothing is perfect and we still need science, then comes along a researcher or two that actually furthers our understanding about autism in a positive way. Please read Douglas Biklen's book (Autism and the Myth of the Person Alone). It is a wonderful read.

The problem with autism now, NAAR, Autism Society, many clinicians, teachers, some behaviour analysts and other therapists (even RDI and Floortime ones), is the absolute belief in autism as "inside the person" as Biklen puts it. In fact, in my earlier days at NAAR, I also held the same belief that autism somehow "masked" my true son before I realized that autism is simply a way of being. There was good reason I held that previous belief and they were the theories of Mind-Blindness, Central Coherence theory and the theory of impaired Executive Function.

As time went on and I tried to hold up these theories against my son, it felt like trying to squish him into other identities. I didn't see that he had any problems with memory, affection, wanting to be social, linking concepts, shifting attention, eye contact, joint attention...he's got all of that. What I did recognize that he needed to be shown how to do a lot of things -- how to play with a toy, how to join a group. His biggest challenges to date is "stereotypy" or "stims" and attention which is affected because of them. On the whole, Adam is a child who wants to learn and be independent and takes pride with his competence. Adam's language is delayed --he speaks but it may take him time to process, or it is still prompt-dependent. When he's not sure what the answer to a question is, he is echolalic. Yet, when I write the answers down for him, he reads them fluently. Written language seems to flow while processing verbal language is more difficult. But it is coming with lots of practise. Motivation is often identified as a challenge for him, and for many children with autism. But even "motivation" is too general a term when we learn from Biklen's synopsis of other science that what we thought as lack of motivation (again another small box that doesn't seem to fit my son), could be related to other factors:

"Bara, Bucciarelli and Colle hypothesize that a single rather narrow impairment such as attention difficulties could affect a range of other cognitive functions, thus causing a person to appear incompetent in higher-order thinking, when the problem is really more on performance (2001, p.219) under particular conditions." (p.42-3). In regards to theories on so-called impairment of Executive Function, Biklen states that the genetic view to autism is pessimisitic and does not consider the person who is classified autistic as elastic like the rest of us:

"The nature side of the argument holds that people are born smart or not, thus exonerating socially created inequities such as poverty and poor educational opportunity from culpability for stunting a person's development. Similarly, when a theory treats autism primarily or exclusively as an internal state or trait, it may, albeit possibly unintentionally, imply biological determinism. Save for the unlikely prospect that science could cure a person of the presumed internal flaw, such a theory is fundamentally a pessimistic stance. The theory defines the person as more or less bound in and made static by trait, with any chance of "improvement" (i.e., becoming more "normal") being modest or unlikely." (Biklen, p.45)

To say that an person classified as autistic is not at all influenced and nurtured by the environment is absurd. To hold the view that one's child will never develop and grow is not only bleak, but unfair and it is the fault of those scientists who push the deterministic views upon parents.

About a year ago, Adam, Henry and I took part in the baby sibs research project here in Toronto. Adam underwent a series of cognitive assessements by a former behaviourist student who was hired by this particular researcher. It was your typical assessment -- and she spoke what I call "dumbspeak" to Adam the whole time, you know, that deliberate higher pitched tone of voice. I swear to this day, here is a person who has no empathy and a set of presumptions about autism. She would look at me like I was in denial about Adam's abilities (no, disabilities in her view). She would peer at me from behind her black rimmed glasses. I am certain to this day that Adam could sense her lack of faith in him. I am certain that any child who has been given the diagnosis of autism knows who believes in them and who doesn't. To this day, I want to smack that girl. To this day, it baffles me when I hear parents say with such certainty that "my child will end up in an institution," or "my child will never do x,y or z." And it may just be so. Not because the child, or adult, cannot grow, but because they perhaps may not be growing in an environment that is nurturing. For all we do as parents, the one thing we must have is optimism and faith in ourselves and our children.

It is difficult to interpret the way Adam sees or experience the world. Interpretations of his behaviour are inherently dangerous, so thanks to all those people who have expressed themselves who are autistic. I think my family and I try to interpret Adam every day. It in fact bothers me when someone says he wants something as presumtion without any intentional or verbal communication from Adam. We are all learning to wait him out. If he needs time, it's okay to give it to him. Autism needs time, and yes, more research. But listening to instinct is an underrated skill in science and yet, science has nothing to argue without it.

Through the Looking Glass

I watch Adam observing the dust particles spotlighted by the beam of sunlight through the window. Daddy tried to make him pee on the potty until I heard "mom, mom, mom...come!" He was happy to see me, obviously not wanting to sit to pee, but more interested in the dust particles happily dancing in front of his eyes. Yesterday, it was the reflection of water against the wall, again aided by the sun's reflection. He was swimming with grandpa in the pool of their condominium, and the water performed a dance like it was just for him.

I've heard other people with autism express how they can SEE the air moving. My Adam is intrigued when rain or snow is falling from the sky -- no small miracle in his eyes, I presume.

He is interested in putting on my sunglasses -- whoa -- the world must look interesting through those, or putting the coloured water blocks to his eyes and then to the window, to see how the outside looks all blue, yellow or red. These are quiet moments, totally entralling for Adam. His babbling stops and I want so badly to see what he sees like I am missing out on one great miracle, or secret, exclusive to his eyes, his world.

Other days I want to give him rose-coloured glasses - the kind that might make the world look like a jollier place. A mother's interest to protect her son.

Adam is busy today -- Sunday. He has O.T., P.T. meeting with his new consultant with our lead therapist and I'm meeting a possible new therapist. If I have time to write more today, it will be by the graciousness of my husband....

Adam is in a session now with his new consultant and our lead therapist, Laura. He is tired after O.T. and P.T. and barely eating because of a stomach virus that's been plaguing us on and off all week. But he always has such a happy disposition. This part of me leaves me amazed and wanting to be like that -- although his happiness must be, in part, genetic.

I feel like describing my days as cup half full or half empty ones -- perhaps I'll begin a daily barometer so you, the reader, can tell from which side of the fence I will be talking about our lives and autism. Today has been a waffling kind of day. The weekends are tougher because I have less supports around. I began thinking about freedom as standing in the Starbucks line with a bunch of other adults. Ahh...and coffee -- definitely associated with Nescafe moments.

Does Adam feel free? Is he affected by "the big black nothingness"(Donna Williams), the sense of imprisonment? Will he as he gets older? "Exposure Anxiety is a invisible cage and to those who live with it, that invisible cage is either their prison warder-monster-saboteur or their saviour, helping them to cut off, shutdown and keep the world of overload at bay." (Williams, p.83) Overall, freedom is based on perception -- entirely resting upon our daily barometers. Freedom can exist in the mind even behind bars, I've heard. How much is autism a prison within? And then there is the prison outside of autism, those that the rest of society constructs.

How much of looking at dust particles is Adam's prison, or personal world, or escape? "It's like trying to remove a parasite which has become finely intertwined with the person's own functioning; they may respond to this `help' as though it were an assault on selfhood...the self of mind which may be free, and the self of will which opposes the desires and needs of the mind..." (Williams, p.83) When I read that I can't help but think about the box, the way of looking at the world, depression, and all of that which suck like parasites on all of us.

I have to move on, paradox keeps tripping me up!

Now to MacLeans Magazine: The Next 100 Years. One Child's Journey to 2105 - How She'll Live, Love and Never Really Die. By 2055, scientists state that there "will be a cure for everything." Yikes. Consider this want ad for a mate:

Tall Blonde. Attractive SWF 29 who is educated looking for SWM 25-35 who is of good moral fibre, monogamous, yet extremely loving and playful. DNA screened for all neurogenerative and metabolic diseases including diabetes, Alzheimers, [Autism] and Parkinsons. Carrier of longevity gene.

Not only will we live forever, but the species that we are attempting to create is perfect. What does that say about my son and his future? What does that say about society's true goals for supporting and enabling the "disabled," and of acceptance of difference? I certainly never wanted to live that long, not until I had Adam. Still, I do not want to live forever as I believe it will effect the quality of my life in the sense that if we have an endless supply of something, we cease to appreciate it.

Yesterday, I laid down on my couch and watched the air move. I watched the clouds drift by on that windy day, undulating swiftly. Sadly, I was missing the transparent coloured blocks.

My husband just told me that I sound like a pro-lifer in my last post. I'm certainly not the type to stand in front of an abortion clinic and make protest.

I am a mother in love with her son who happens to be autistic. In him, I see miracles everyday. I admit that prior to having a son with autism, I would have been fearful of autism, downs syndrome...it is not a condition people would prefer to deal with because people have no idea what it involves without having had the experience. This is why we as parents have so much awareness-raising to do. Before I had my son, I feared anything that was "different." After the experience, I would have opted to have a child with any "special" need. Yes, it is challenging in a society that does not yet provide enough supports, but having know what I know today, this is just life and all of this genetic pruning for perfection leaves me to think of how base and banal a society we might become.

Autism and Paradox

Everytime I have a resolute opinion about autism, a moment later, I feel I must offer an antithesis. The feelings conflict because autism is itself a paradox. Of knowing and unknowing, of ability and inability, of what is present and what is missing. Perhaps only as an outsider do I view it this way.

First, there is Donna William's description in her book Exposure Anxiety: "Can't do it for myself; Can't do it by myself; Can't do it as myself." And yet, a person with the diagnosis of autism, let's use my son as an example, does many things by himself, albiet not always under scrutiny or on demand. What appears like a missing piece or to a layperson, a cognitive delay or inability, is in fact ability obscured. Autism is indeed not what it appears, and the way we treat it is ultimately paradoxical -- trying to teach someone who knows inherently, like teaching emotion to an autistic person highly tuned in to it -- perhaps it's knowing and perceiving without knowing how to translate it into another language -- the langauge the rest of us understand? But then this is not so with writers and artists who are autistic, who have found a common ground with which to communicate. Going back to face recognition seems almost ridculous when we begin to understand the complexity of perception and thought beneath the surface of autism's appearance. But in order to translate it to operating in our world, the common language, simply put, must be used?

The way I deal with autism in the way we teach Adam is in constant flux as a result of him -- it is trying to find a way to teach that challenges him while at the same time bringing him to respond at any time. I am trying some behavioural approaches without wanting to subscribe to behaviourism, solely because learning is in large part based on pride, and marathons are won with ribbons. I like what Donna Williams says about work on behaviour: "for with Exposure Anxiety, more than any other condition I can imagine, compliance is not a long-term sustainable answer if our goal is independence in capable people who cannot handle awareness of the self." Or consider this quote about social-emotional development:

"The only things that could actually lend support rather than add to incapacity were things like objects, nature, reflection or the sense of myself in the third person as a form of company. Essentially, these "autistic" self-reassurances made it more possible to dare communication, expression, or involvement or a true self-expressive kind (as opposed to avoidant, diversion, and retaliation responses). It's important to realize here that what I was probably trying to get around was not an emotional development issue, but the interference of my own chemistry mechanisms which were triggered too easily. Many people think that getting through to people is the answer. When you are looking at underlying physiological problems and their impact, there may be very little the outside world can to to reassure. It maybe more a matter of doing what one can to to help people chemically and understand how the behvaioural approach may interact with that chemistry to the benefit or detriment of the person's cognitive, communication and socio-emotional development." Exposure Anxiety, p.41

Ok, I'll have to work out these raw thoughts. What I'm trying to allude to is the utter confusion between our way of looking at things, at how we should view the world, interact and communicate and all the nitty gritty in between that makes autism difficult for the rest of us to perceive and understand. We do everything in our power to change the autistic person. We do it under the premise of helping them "cope" and "adapt" (my own goals -- I still grapple with them), without actually knowing what it is a person with autism wants. It is so difficult when they cannot tell us themselves, or when children are so young, we try as parents interpret and make choices in their best interests.

I believe that this ethical grappling as a parent must be crucial -- always trying to understand and figure out the best we can do while honouring our children and who they are with autism.

I received a disturbing link today on Dr. Joseph Buxbaum's research on MSNBC -- NAAR supported:

"Dr. Joseph Buxbaum heads up the Autism Genome Project at the Mount Sinai School of Medicine. Buxbaum says he expects major progress in identifying the genes associated with autism in the next decade.

“I think within ten years we'll have found the genes of major affect and most of the genes of minor affect,” said Buxbaum. “That will then lead to reasonable targets for drug interventions. It will lead to much better diagnosis and certainly earlier diagnosis.”

Buxbaum says there could be a prenatal test within 10 years.

“If we get to the point where we have 10 genes that predict risk to some significant degree, then there is a prenatal test,” he said.

Once genes are identified, there will be targets for drug intervention.

What does this imply? Why do we have prenatal testing - to what end? I think the likelihood that abortion will be offered if an autistic fetus is identified. Does anyone think of the reprecussions of all this research? Abortion of so-called "disabled" fetus' is akin to ethnic cleansing in my opinion. We are not ready to make these decisions, we have not had enough time to debate these important bioethical issues, these researchers and the organizations that support them are like bulldozers trying to pushing this along before we really talk about what's at stake. Whether you believe the following people are Aspergers or not(I acknowledge that there is uncertainty, but let's use as examples for the sake of this argument), "would the world consider aborting the next Bill Gates or Albert Einstein?" asks Arthur Kaplan at the Centre for Bioethics at the University of Pennsylvania. He states that the future of society depends on how we answer these questions, and I believe he is right.

I have HUGE problems with prenatal testing for autism and I urge all of you reading this to join me in this dialogue and raise your objections everywhere. If any of you are lobbyists, come aboard. This is a very disturbing trend that needs a whole lot of dialogue.

http://www.msnbc.msn.com/id/7013251/from/ET/

Autism as a Social Construct

Last summer, I read the story of Hugh Blair -- a son of landowners who was married off and inherited the estate. The only reason we know of him today is because of court records -- his brother sought to take the estate away from Hugh, who today we understand to have been autistic. In it, there are accounts of how he curiously lived his life -- and was described as mentally incapacitated, unable to live on his own. When reading these accounts of nearly two hundred years ago, Hugh, through the eyes of his contemporaries, appears like a caricature. Due to his "mental incapacitation," he was deemed by the courts as unable to look after himself, live freely and keep the estate his mother endowed to him.

So what role does our society play in viewing and thinking about those with autism? We have progressed so far in terms of our knowledge about autism from the days of Leo Kanner and Hans Asperger. Yet the words of history resonate to this day. When autism was first described by these men in 1943, the frame autism was placed in, although yellowing at the edges over 50 years later, remains in the same frame. It appears that the views of society wallow in the safety of history. But if we take apart the vernacular used back then, we can see clearly how history, society and personal bias takes a huge part in how we view autism today.

Let us start with Leo Kanner and pay attention to judgmental language. He described charactersitics of autism as "a marked limitation of spontaneous activity, "stereotyped movements," "a child's inability to to relate to themselves" and called autism "inborn autistic disturbance of affective contact." Hans Asperger describes autism thus: "The autist is only himself and is not an active member of a greater organism which he is influenced by and which he influences constantly....The essential abnormality in autism is a disturbance of the lively relationship with the whole environment." Abeit these are brief examples and perhaps not the best ones in their repertoire, but these descriptions do not describe the abilities of autism or even assume that the life of the autistic person is rich with perception, intelligence, thought or even prefers to be alone and quite content with that -- it assumes that what is not like the rest of us, is abnormal and "tragic." (Read Douglas Biklen, Autism and the Myth of the Person Alone for further reference to this).

This is the main thrust of behaviourist and many other operationalized principles: it is taking a view about autism that does not belong to one who has been diagnosed with the condition of autism, but rather, the rest of us who are not autistic have more authority in terms of labelling, diagnosing, assessing and interpreting autism and autistic behaviour. It assumes that:

1. Autism is a socially inappropriate way of behaving that must be corrected;
2. People with autism do not want to be social so we must teach them social skills or assumes that they want to be social and we must help them be so (do we ever really know the desires of others if not articulated to us?);
3. It accepts the behaviourist's or any other therapist's intepretation of the behaviour as the true meaning of that behaviour.

Simon Baron-Cohen, whose theories I believe are fundamentally wrong (assuming people with autism are mind-blind as he also states "knowing seems beyond most children with autism") is his judgement alone. I've met many a "low-functioning" (hate that term -- it means nothing), person who possess great intellectual ability, emotion and perception of others, despite their outward appearance or way of being. Further, does outward appearance and action reflect thought? Would we classify Stephen Hawking as "low-functioning?" (Biklen refers to Hawking in this context as did I in a paper last year).

It is important that we all understand that judgement and bias is innate in the "scientific" theories about autism -- we must account for the scientist's own personal bias, social influences, judgements and opinions and the history of disability, and how that has influenced our thoughts and opinions. However, we seem to be taking all of these accounts now as today's TRUTH about autism. Parents and educators assume that these resonating words, unworthy as they are, are absolute truths. Parent's invest dollars in therapies that claim to be "scientifically proven," when they are not. I call these vapours -- and we stake children's lives upon them?

How do we evaluate success? What frame do we put that in as another absolute? How do we even evaluate progress in therapy for that matter? All this therapy, 40, 50 hours a week, and yet I've not yet met one person who is no longer "autistic." There is no proof. Is the goal of becoming "indistinguishable from one's peers," an honourable goal? Is it in the best interest of the child? Making one "indistinguisable" can be translated into "acceptable." And what does that say about us and how we view genetic diversity?

I will be writing more...I have to go pick up Adam from nursery school now...

Paying Attention to Autism Vernacular

In autism and dealing and describing our children, I believe that how we describe them reflects how we as parents VIEW them. The use of language in how we refer to autism directly relates to how we feel and relate to our children.

I admit that some days I feel confused. I use terms like "an autistic child" as opposed to "a child who happens to have autism." It is true that we are all more than our labels. Autism is a difference, not a disability. I find myself constantly correcting my language, or making mistakes. Yet, I think as parents especially, we ought to be cognizant and careful of how we use it.

Wrong Ways of Stating Things:
My child is autistic
My child is disabled
Autism is a disease
Autism is a disorder
My child is special needs
My child will be in an institution
ABA is the only LIFESAVING therapy for autism
Autism is an epidemic


Right Ways of Expressing Things
My child learns differently
My child is unique
My child has special requirements
My child has ability
My child will learn on his/her own timetable
My child can learn

There is more...anything that chips away at the unique identity of the child, the child as a whole person instead of "half" of one (normal versus abnormal), is wrong.

It is easy to pull out my hair with autism therapies too. ABA, RDI, Floortime, SI, whatever. At the end of the day, I still ascribe, with my whole heart, to a program that meets THE UNIQUE NEEDS OF EACH CHILD. The problem with programs, per se, is a dangerous lull to blanket approaches, thereby assuming that every autistic child has the same learning needs. In fact, there is nothing more difficult than to help our children and program for them becuase of adherences of certain teaching communities to one program or another. A parent really has to have some balls. A parent has to have faith amidst all the influences and seeds of doubt that many communities wish to impose upon us. It takes a lot of research and a lot of guts. I call every parent to acknowledge the doubt and exercise the time and patience it takes to learn everything you can get your hands on. Then, go back to watching your child and your intuition. Then and only then do I think we can do the best things for our children.

Here's an answer that I repeat to myself when this or that comes pounding in -- what is making Adam attentive and willing to learn? What makes him happy? What makes him able to adapt to the world around him? What are his abilities I can use as bridges to learning? If we can answer those questions, we are well on our way to building a program that works for him.

I used to be co-chair of NAAR here in Toronto (my title changed a couple of times from sponsorship chair to co-chair, so I'm not sure what I was, actually...I raised some money...). NAAR uses vernacular I highly disapprove of, albeit I do appreciate all the research that they do support. It uses CURE to market itself and since there is no, and likely never will be, a cure for autism, I find this highly objectionable. I prefer to address the research in order to understand autism, teach better and create more awareness and understanding. I find the CURE for autism, highly controversial and takes the negative and disabling view towards our children. Instead of fostering a community of genetic diversity, and accepting that as parents and fundraisers, there is a community of people who hate people with autism and insist on CURING them. Think of it that way for a change. Maybe we will all view our children a little differently now.

Wisdom Comes Through Suffering

As I said earlier, optimism doesn't come for free. I look at all kinds of positive stories about those who are autistic, who "presented" similarly, or even worse than Adam in the early years. The purpose of looking at positive stories is the same as an athelete's visualization -- the goal has to be clear. I believe the same approach holds for my son Adam. For me, it is a marathon that never seems to end right now. For Adam, it is the marathon he doesn't quite yet understand. Some parents who write to me seem so low -- their child will "never" do this or that, instead of realizing that their marathon, no matter how old the autistic person is, is just not over yet. Development can occur at any age. I've heard of 42 year old autistic people just becoming independent, just acquiring a new stage with such joy and sense of accomplishment. So I read and talk to parents of autistic people, now in their twenties and thirties, who struggled just like us, but now study jazz guitar, or teach mathematics. Things that just didn't seem possible happen only with plain faith and constant chipping away. This is the journey of autism.

I would be lying to you if I didn't tell you the moments of worry and doubt. These moments keep wanting to press in and strangle me. It is a battle not to let them. Here was one last night: I dreamt that I died while taking care of Adam. I am most often alone here with him in the house -- my husband works long hours and I don't have any live-in help. I dreamt that Adam's nanny was also sick and didn't show up the next morning, my husband was out of town and I died. Adam was alone in the house, his diaper getting fuller so he took it off and the feces bothering him that he smeared it all over the upstairs in an attempt to clean himself. He kept coming to me and pulling my arm, crawled all over me for a "squish," oblivious to the fact that I died. He soon gave up and chattered to himself in his room, preserverating with toys, walking back and forth, playing with his hands. This goes on for a while. He pees, he gets hungry. The phone rings -- my parents think we just must be out. Adam gets hungrier. He cries. He tries to climb over the dangerous gate to go down the stairs to get some food. He tries to wriggle under it (there is a space). He gets stuck and screams. No one can help him....

Isn't that awful? Consuming thoughts like this happen once and a while. I have to fight them off. I take a deep breath as I write this down, my eyes tearing. Deep breath again. I must shake this.

Isn't this the worry of all parents with autistic children? Just how long can we live so we can take care of our children? Eighty years? Ninety? What if I get sick? I am already forty years old. He is just turning four this April. When he is twenty, I'll be fifty-seven. When he is forty, seventy-seven (my aunt just died at seventy-eight). I don't think there is one parent I've met who doesn't have the same thoughts run across their minds.

Adam's stims have gone way up these days. I see so much potential in him, but these are the biggest obstructors. I am installing a swing in the basement for vestibular feedback (he becomes so much more organized when we incorporate movement into his day). We need to teach him more functional play skills so that he can redirect himself. We will provide him with a visual box that he can have at prescribed times during the day to give him the feedback he needs, but teaching him that he has to do others things at other times of the day.

I have been teaching him reading. This is going well. He does have some issues at discriminating words -- words that I know he knows will get confused with same-letter words if he is distracted. But if I teach him this skill, I am convinced it will help him communicate. I also notice that he is terrific with intraverbals, but I think he has learned to speak this way, so I am getting him to read complete simple sentences now in the hopes that he will understand them and use them. I am also fading back (backward chaining) my intraverbals in order to get him to say the last two words of a sentence instead of just the last word. I've just started doing that and it seems to be working. If I had to evaluate his progress against last year's, he really is speaking a lot more. He is tranisitioning well, he has been weaned effortlessly, and he is taking to potty training very well. He loves art-making, has begun to spell words (albeit with inconsistent interest in doing so), and is learning to read. He adores music and is singing more songs and is slowing learning to imitate actions, even if they are still delayed responses, he never did actions before. He has improved his motor skills -- can hold a pencil better, can draw, can climb, and is beginning to jump off higher surfaces. There is more, but I think that's enough to convey how much progress he has actually made. It is all these steps we have to remember every day.