Three weeks ago on Sunday, Marli, Daigoro and I were in the pews of
our church (Kenshin was downstairs with the nursery care) and I looked
over to see Daigoro reading the words of the hymn on the screen and
singing along in a beautiful, clear voice. It brought a tear to my eye.
His pitch isn't perfect, but he isn't afraid to sing, and that makes my heart very proud.
Monday, July 16, 2012
Wednesday, June 13, 2012
He Tried... to... trick... me (Vignette)
I'm taking Kenshin to his morning class. He's hanging up his coat and school backpack. Suddenly, he pauses and looks up at me.
He says, almost under his breath, "Mrm."
(He frequently does this when he's conflicted or thinking about something.)
He pauses a bit more, unzips his bag a fraction, then pauses again.
"Mrm," he repeats to himself, rocking slightly on the balls of his feet.
He starts to reach into his backpack, then stops. My son looks up at me again with his cute, cherubic face and says, "You go over that way."
Kenshin points behind me, out of the cubbyhole and coat hook area.
He doesn't want me to see what's in his backpack. I narrow my eyes and glance at the slightly opened bag. There's a DVD case inside: "Little Einsteins" (one of his favourite shows).
The little so-and-so has smuggled a DVD to school.
I gently take the DVD out of the backpack and hold it up while I look at Kenshin.
"Are you allowed to take DVDs to school?"
"No," he says, quietly.
I put on my serious face, "No DVDs at school. I'm going to bring this back home."
He looks cheerful, "OK."
It's both a little sad and a little heartening that he's learned to try to "fool" his Daddy. He knows he's doing something wrong and he knows he will be punished or at least rebuked for it. At the same time, he still wants the pleasure of carrying around the object (I don't think he has any conception of actually watching the DVD at school, I think he just wants to hold it, as he does sometimes at home) and he knows that if I don't catch him, he might get away with it.
He's done things like this before, but usually not so boldly.
Well, that at least exhibits a sense of self and awareness of other... I guess.
Well, that at least exhibits a sense of self and awareness of other... I guess.
Friday, March 09, 2012
Love Notes
Occasionally, I put little notes to my boys in their lunches, a little drawing, a note about how I love them or that I think they'll do great that day.
Tonight I found one of those notes in Daigoro's lunchbag.
On it, I had written. "I love you! - Daddy".
He had written back, in his still developing but very cute handwriting, "I love you too."
Tonight I found one of those notes in Daigoro's lunchbag.
On it, I had written. "I love you! - Daddy".
He had written back, in his still developing but very cute handwriting, "I love you too."
Thursday, February 16, 2012
Kenshin's Particular Flavour of Autism
I remarked in previous posts that Kenshin doesn't display many of the typical traits associated with autism. I thought I should write down for the record what features of autism that Kenshin presents "typically" and which are "atypical" - at least at his current age.
For convenience, I'll just follow along with the wikipedia article on Autism using the characteristics it describes. I'll then compare his "flavour" of autism with the new redefinition of Autistic Disorder.
His speech was delayed and he had only begun rudimentary speech at 18 months. Kenshin began to exhibit signs of noticeable developmental delay at age two. Walking was somewhat delayed, but within "norms" for boys.
Social Development
Aside from speech delays, we noticed that Kenshin did not typically register social greetings (hello, goodbye, how are you) and would not generally wave. He would only infrequently make eye contact. This is apparently typical for many autistic children. Although he went through a period of "screaming", this was not typically a tantrum in the commonly understood sense - in that he was reacting to not getting something he wanted, but he would scream when something he didn't like (certain foods, foods with sauce on them) was placed too close. Asking for things and looking someone in the eye while doing so is difficult for him. He will generally take an object if available without asking. This is problematic when trying to play with other children.
He was (and is) generally a "fearless" kid - he doesn't seem to mind wandering off from us (the parents) or other caregivers - he exhibits less need for attachment than peers his age.
Turn taking is also a problem, though he is slowly learning how that works through repetition and reinforcement.
He does not appear to be lonely; generally he seems quite happy to play independently, but I have noticed a preference to play in the vicinity of other children or adults. He will come into the room, situate himself within 1.5-3 metres, and then play on his own. If you move, he will tend to move to maintain that distance - close enough to be aware of your presence, but far enough not to be playing together. He will ask us as parents to accompany him to a different room while he plays, not necessarily to play with him, although he will now phrase it as "playing with me".
As he has grown, he has begun to seek out more interaction with other children, often by "clowning" or chasing. Interactive play is possible but usually only with prompting. He is beginning to interact more spontaneously with playmates, but progress is slow.
He is generally not aggressive at all; in fact I would characterize him as being a pretty peaceful child with a fairly even temper.
All of these aspects of social behaviour are fairly typical for autistic children of Kenshin's age.
Communications
As mentioned above, Kenshin was delayed in developing speech, and is probably currently speaking at a 2.5 to 3 year-old level (he is currently four and a half). As noted on this blog, development was very slow, with occasional bursts of advancement. We have noticed he has particular difficulty processing questions like "Why are you sad?" or "Why did you take that?" and also reverses pronouns (yours/mine, me/you), especially in questions or situations which deal with concepts of self. Joint attention is problematic, but not as much as it seems to be with some children, and inability to point or misunderstanding pointing is not as pronounced as would seem to be typical with other autistic children; he will generally understand what you mean when you point to something, though he will seldom indicate things by pointing himself.
I have noticed that he will repeat others' words or his own words in situations where he doesn't seem to understand what is being asked of him. This echolalia is most easily replicated by asking him a complicated "why" question; for example, "Why did you throw the jar of jam down the stairs?" - he will say in answer: "I throw the jar of jam down the stairs." On other occasions, he seems to be repeating words quietly to himself (sotto voce) for the pleasure of hearing the words again, or to reinforce something he has heard - not in response to a question or a situation, but because he wants to say the words to himself.
For example: He will be sitting in bed, quietly, and he will say, apropos of nothing, "Rainbow fish gives his tail," very quietly to himself. A few minutes later he will say the same thing. Marli and I jokingly refer to this as the "creepy movie kid voice". Fortunately he doesn't say things like, "When Mars is ascendant in the house of Ares, my unholy father will come to destroy the world," or else it would be a little too creepy.
In most respects his communications are typical for an autistic child, with the exceptions as noted above.
Behaviour
If there is one category that I would say Kenshin is most atypical for an autistic child, it is behaviour.
He does not engage in stereotypy - repetitive movement "such as hand flapping, making sounds, head rolling, or body rocking." There are one or two hand configurations, flexing his index finger underneath the tip of his middle finger and splaying out the little finger - looking a little like a an Buddhist mudra, which I have seem him do when he is somewhat anxious about something or wants something.
There is little compulsive behaviour - he does not line things up in a specific pattern, or stack things or make sure things are done in a specific order. Our developmental specialist did note that there is an aspect of clinical "compulsion" to his behaviour, but it is atypical in its manifestation.
He does not require sameness - we can switch up his daily routine or the positions of objects in the house with zero complaint from him. He does tend to resist being interrupted at times, but only slightly more so than I would expect from a neurotypical child.
I have only observed a few rituals - when I drop him off in the morning, after he takes off his coat and boots, he will invariably say "hug" (give me a hug) then say, "then a kiss," (and give me a kiss) and then say, "aaaand done," then walking determinedly (and without looking back) to join his peer group. However if we cannot perform this ritual or it is interrupted, it does not seem to phase him. I haven't seen many other rituals - perhaps Marli will chime in with some.
Restricted behaviour he has in spades. He only wants to play on the iPad or one of our game systems (PS3 or Gamecube), or on the computer. He will ask for it repeatedly, from the moment he gets up until he goes to bed. We allow him approximately 30 minutes per day. He would play all day, given the chance. This is one of the more worrisome (and stressful), not to mention socially embarassing behaviours he exhibits. It gives us the appearance of absentee parents, content to let him know nothing other than video games.
He does not self-injure to any extreme degree, though I have seen him bonk his head on walls as a joke for his brother or to act the clown.
Other Symptoms
Kenshin is sensitive to bright light or loud sounds, but actually doesn't mind bright light once established (in fact, he will sometimes become agitated if we turn off a light in a brightly lit room when there are two light sources on). Sudden loud noises seem to startle him, and he will turn down a TV if he finds it too loud. We have had his hearing tested and he is well within norms (in some frequencies, better than normal) for his age group.
He used to show poor coordination and muscle tone, but as he plays more often in parks and runs, this awkwardness is less pronounced. He's actually quite nimble on monkey bars and climbing equipment, and aided by his obliviousness to injury or danger, he seems quite proficient where some neurotypical children would balk or otherwise perform poorly.
Kenshin dislikes certain sauces, mixtures and presentations of foods. For example he will not eat hamburgers or hotdogs with anything on them - even the slightest appearance of ketchup or mustard will elicit complaint or, if there is a lot of sauce, tears. He seems to love Kraft dinner macaroni and cheese, which has a sauce component which doesn't bother him, but he balks at homemade macaroni and cheese, which is apparently "too saucy". Curiously, he is fine with pasta and meat sauce/ragus, despite its saucy nature. If he sees Daigoro with a burger or hotdog with sauce, he will immediately say "I don't want sauce on mine."
He used to be dead-set against vegetables, but he is much more accepting now. He loves rice (he will wolf it down) and most meat.
A common complaint, when he doesn't like the food, is "I want plain food." Marli and I believe this is a reaction to flavours and textures which may be too intense for him. Strangely he seems more tolerant of "spice" - spciy hot - than other kids. I've seen him eat some spicy chips and other salty snacks which I would have assumed would send him screaming for water, but he simply sits and munches away happily. I don't know how to reconcile this with his sensitity to other common spices like basil or oregano. For example, he recently ate a number of cinnamon hearts happily, while his brother was fanning his mouth and asking for water after eating two.
We have progressed to the point where he can eat a relatively nutritious meal, though I would still prefer more variety and less salty, pre-prepared foods.
He definitely has no appetite problems - presented with food he likes, he will eat voraciously. I am not aware of gastrointestinal issues.
Amusingly/ironically Kenshin never really ran around on his toes (apparently one common indicator), but Daigoro did.
Some children with autism have sensitivity in varying degrees to being touched. To my everlasting relief, Kenshin is a huggy, touchy-feely kid who doesn't mind being touched or hugged.
The proposed new AMA definition of Autistic Disorder:
So, in looking at these in order:
Section A:
1 a) applies
1 b) applies
1 c) partially applies
1 d) applies
2 a) applies
2 b) applies
2 c) applies to some extent
2 d) applies
3 a) applies
3 b) does not apply
3 c) does not apply
3 d) does not apply
Section B:
All three categories apply.
Section C:
Rett's Disorder or Childhood Disintegrative Disorder does not seem to account for the disturbance.
So, even by the new AMA definition, Kenshin could be classified as having austistic disorder.
For convenience, I'll just follow along with the wikipedia article on Autism using the characteristics it describes. I'll then compare his "flavour" of autism with the new redefinition of Autistic Disorder.
His speech was delayed and he had only begun rudimentary speech at 18 months. Kenshin began to exhibit signs of noticeable developmental delay at age two. Walking was somewhat delayed, but within "norms" for boys.
Social Development
Aside from speech delays, we noticed that Kenshin did not typically register social greetings (hello, goodbye, how are you) and would not generally wave. He would only infrequently make eye contact. This is apparently typical for many autistic children. Although he went through a period of "screaming", this was not typically a tantrum in the commonly understood sense - in that he was reacting to not getting something he wanted, but he would scream when something he didn't like (certain foods, foods with sauce on them) was placed too close. Asking for things and looking someone in the eye while doing so is difficult for him. He will generally take an object if available without asking. This is problematic when trying to play with other children.
He was (and is) generally a "fearless" kid - he doesn't seem to mind wandering off from us (the parents) or other caregivers - he exhibits less need for attachment than peers his age.
Turn taking is also a problem, though he is slowly learning how that works through repetition and reinforcement.
He does not appear to be lonely; generally he seems quite happy to play independently, but I have noticed a preference to play in the vicinity of other children or adults. He will come into the room, situate himself within 1.5-3 metres, and then play on his own. If you move, he will tend to move to maintain that distance - close enough to be aware of your presence, but far enough not to be playing together. He will ask us as parents to accompany him to a different room while he plays, not necessarily to play with him, although he will now phrase it as "playing with me".
As he has grown, he has begun to seek out more interaction with other children, often by "clowning" or chasing. Interactive play is possible but usually only with prompting. He is beginning to interact more spontaneously with playmates, but progress is slow.
He is generally not aggressive at all; in fact I would characterize him as being a pretty peaceful child with a fairly even temper.
All of these aspects of social behaviour are fairly typical for autistic children of Kenshin's age.
Communications
As mentioned above, Kenshin was delayed in developing speech, and is probably currently speaking at a 2.5 to 3 year-old level (he is currently four and a half). As noted on this blog, development was very slow, with occasional bursts of advancement. We have noticed he has particular difficulty processing questions like "Why are you sad?" or "Why did you take that?" and also reverses pronouns (yours/mine, me/you), especially in questions or situations which deal with concepts of self. Joint attention is problematic, but not as much as it seems to be with some children, and inability to point or misunderstanding pointing is not as pronounced as would seem to be typical with other autistic children; he will generally understand what you mean when you point to something, though he will seldom indicate things by pointing himself.
I have noticed that he will repeat others' words or his own words in situations where he doesn't seem to understand what is being asked of him. This echolalia is most easily replicated by asking him a complicated "why" question; for example, "Why did you throw the jar of jam down the stairs?" - he will say in answer: "I throw the jar of jam down the stairs." On other occasions, he seems to be repeating words quietly to himself (sotto voce) for the pleasure of hearing the words again, or to reinforce something he has heard - not in response to a question or a situation, but because he wants to say the words to himself.
For example: He will be sitting in bed, quietly, and he will say, apropos of nothing, "Rainbow fish gives his tail," very quietly to himself. A few minutes later he will say the same thing. Marli and I jokingly refer to this as the "creepy movie kid voice". Fortunately he doesn't say things like, "When Mars is ascendant in the house of Ares, my unholy father will come to destroy the world," or else it would be a little too creepy.
In most respects his communications are typical for an autistic child, with the exceptions as noted above.
Behaviour
If there is one category that I would say Kenshin is most atypical for an autistic child, it is behaviour.
He does not engage in stereotypy - repetitive movement "such as hand flapping, making sounds, head rolling, or body rocking." There are one or two hand configurations, flexing his index finger underneath the tip of his middle finger and splaying out the little finger - looking a little like a an Buddhist mudra, which I have seem him do when he is somewhat anxious about something or wants something.
There is little compulsive behaviour - he does not line things up in a specific pattern, or stack things or make sure things are done in a specific order. Our developmental specialist did note that there is an aspect of clinical "compulsion" to his behaviour, but it is atypical in its manifestation.
He does not require sameness - we can switch up his daily routine or the positions of objects in the house with zero complaint from him. He does tend to resist being interrupted at times, but only slightly more so than I would expect from a neurotypical child.
I have only observed a few rituals - when I drop him off in the morning, after he takes off his coat and boots, he will invariably say "hug" (give me a hug) then say, "then a kiss," (and give me a kiss) and then say, "aaaand done," then walking determinedly (and without looking back) to join his peer group. However if we cannot perform this ritual or it is interrupted, it does not seem to phase him. I haven't seen many other rituals - perhaps Marli will chime in with some.
Restricted behaviour he has in spades. He only wants to play on the iPad or one of our game systems (PS3 or Gamecube), or on the computer. He will ask for it repeatedly, from the moment he gets up until he goes to bed. We allow him approximately 30 minutes per day. He would play all day, given the chance. This is one of the more worrisome (and stressful), not to mention socially embarassing behaviours he exhibits. It gives us the appearance of absentee parents, content to let him know nothing other than video games.
He does not self-injure to any extreme degree, though I have seen him bonk his head on walls as a joke for his brother or to act the clown.
Other Symptoms
Kenshin is sensitive to bright light or loud sounds, but actually doesn't mind bright light once established (in fact, he will sometimes become agitated if we turn off a light in a brightly lit room when there are two light sources on). Sudden loud noises seem to startle him, and he will turn down a TV if he finds it too loud. We have had his hearing tested and he is well within norms (in some frequencies, better than normal) for his age group.
He used to show poor coordination and muscle tone, but as he plays more often in parks and runs, this awkwardness is less pronounced. He's actually quite nimble on monkey bars and climbing equipment, and aided by his obliviousness to injury or danger, he seems quite proficient where some neurotypical children would balk or otherwise perform poorly.
Kenshin dislikes certain sauces, mixtures and presentations of foods. For example he will not eat hamburgers or hotdogs with anything on them - even the slightest appearance of ketchup or mustard will elicit complaint or, if there is a lot of sauce, tears. He seems to love Kraft dinner macaroni and cheese, which has a sauce component which doesn't bother him, but he balks at homemade macaroni and cheese, which is apparently "too saucy". Curiously, he is fine with pasta and meat sauce/ragus, despite its saucy nature. If he sees Daigoro with a burger or hotdog with sauce, he will immediately say "I don't want sauce on mine."
He used to be dead-set against vegetables, but he is much more accepting now. He loves rice (he will wolf it down) and most meat.
A common complaint, when he doesn't like the food, is "I want plain food." Marli and I believe this is a reaction to flavours and textures which may be too intense for him. Strangely he seems more tolerant of "spice" - spciy hot - than other kids. I've seen him eat some spicy chips and other salty snacks which I would have assumed would send him screaming for water, but he simply sits and munches away happily. I don't know how to reconcile this with his sensitity to other common spices like basil or oregano. For example, he recently ate a number of cinnamon hearts happily, while his brother was fanning his mouth and asking for water after eating two.
We have progressed to the point where he can eat a relatively nutritious meal, though I would still prefer more variety and less salty, pre-prepared foods.
He definitely has no appetite problems - presented with food he likes, he will eat voraciously. I am not aware of gastrointestinal issues.
Amusingly/ironically Kenshin never really ran around on his toes (apparently one common indicator), but Daigoro did.
Some children with autism have sensitivity in varying degrees to being touched. To my everlasting relief, Kenshin is a huggy, touchy-feely kid who doesn't mind being touched or hugged.
The proposed new AMA definition of Autistic Disorder:
Autistic Disorder
A. A total of six (or more) items from (1). (2), and (3). with at least two from (1) and one each from (2) and (3):
(1) qualitative impairment in social interaction, as manifested by at least two of the following:
a) marked impairment in the use of multiple nonverbal behaviors such as eye-to-eye gaze, facial expression. body postures, and gestures to regulate social interaction
b) failure to develop peer relationships appropriate to developmental level
c) a lack of spontaneous seeking to share enjoyment, interests, or achievements with other people (e.g. by a lack of showing, bringing or pointing out objects of interest)
d) lack of social or emotional reciprocity
(2) qualitative impairments in communication as manifested by at least one of the following
a) delay in, or total lack of, the development of spoken language (not accompanied by an attempt to compensate through alternative modes of communication such as gesture or mime)
b) in individuals with adequate speech, marked impairment in the ability to initiate or sustain a conversation with others
c) stereotyped and repetitive use of language or idiosyncratic language.
d) lack of varied, spontaneous make-believe play or social interactive play
(3) Restrictive repetitive and stereotyped patterns of behavior, interests, and activities as manifested by at least one of the following:
a) encompassing preoccupation with one or more stereotyped andrestricted patterns of interest that is abnormal either in intensity or focus
b) apparently inflexible adherence to specific, nonfunctional routines or rituals
c) stereotyped and repetitive motor mannerisms (e.g. hand or finger flapping or twisting or complex whole body movements)
d) persistent preoccupation with parts of objects
B. Delays or abnormal functioning in at least one ofthe following areas. with onset prior to three years (1) social interaction, (2) language as used in social communication, or (3) symbolic or imaginative play.
C. The disturbance is not better accounted for by Rett's Disorder or Childhood Disintegrative Disorder.
So, in looking at these in order:
Section A:
1 a) applies
1 b) applies
1 c) partially applies
1 d) applies
2 a) applies
2 b) applies
2 c) applies to some extent
2 d) applies
3 a) applies
3 b) does not apply
3 c) does not apply
3 d) does not apply
Section B:
All three categories apply.
Section C:
Rett's Disorder or Childhood Disintegrative Disorder does not seem to account for the disturbance.
So, even by the new AMA definition, Kenshin could be classified as having austistic disorder.
Different not Less (?)
Last night Marli and I watched Temple Grandin, an HBO movie about the eponymous real life person, Temple Grandin (wiki link) . I confess I wouldn't have rented this movie on my own because I generally find made-for-TV biographies (and movie biographies in general) to be overblown (dramatic where they need not be dramatic, and wrong where they should be accurate). What bothers me is that these sorts of movies take a story which is potentially already inspiring on its own, and take it into glurge territory by making everything into a hyper-real, one-vs.-all, "nobody helped me" story of personal triumph. It's rare that you get a biography that "feels real", and this is all too often confirmed when one reads into the actual history behind what is portrayed. It's like a war story where the original story is amazing enough already, but screenwriters have to add a love story, add four superfluous characters who get killed unnecessarily, make three important historical people into one "composite character" and then change some of the plot so that it makes less (or no) sense from a historical viewpoint. Oh, and change the nationality of some or all of the people in uniform. [*cough* (U-571) *cough*]
You know, minor editing like that.
Temple Grandin (the movie), to its credit, generally steers away from this sort of hyperbole (mostly). It did make me want to purchase the book to get a better sense of her thought processes and individual challenges away from the screenwriter's (and producers') need to make everything into a drama.
In a nutshell, Temple Grandin (the person) is a woman with autism who uses her particular way of looking at things (she used it as the title of her book "Thinking in Pictures") - as a springboard to an education (and later career) in Animal Science and autism advocacy. To explain much more would spoil some of the more interesting twists and turns of the movie.
It's well acted, and Claire Danes, playing Temple, seems to nail a lot of the mannerisms and "looks" that I've seen Kenshin do. In particular, one scene in which she has a bit of a breakdown over not understanding social cues during a society party, she covered her face with her hands with palms out and interlocked thumbs in front of his nose exactly the way Kenshin does when he's particularly upset. Danes definitely had the "chops" for this role.
The story is definitely quite inspiring while at the same time bittersweet. I can envision Kenshin having to endure much of the same prejudice and misunderstanding that Temple went through as an autistic person who otherwise appears quite normal. I also look forward to encouraging Kenshin to use whatever gifts or strengths he has now or manifests later. I'm very glad that Marli coaxed me into watching it. I'm going to recommend it to others, especially in my family.
That said, I think there are problems with it.
Not to say that it is bad, or the problem is IN the movie itself, but for me it is the expectations that it raises. Temple Grandin is a high-functioning autistic person with an exceptional gift of insight and intelligence. Her way of "thinking in pictures" while not uncommon in autistic individuals, is exceptional because she has learned to articulate and put it into action in engineering applications as well as her psychological research and lecturing.
Even in my very limited exposure to people with autism and understanding of it through reading and research, many, many people with autism (I do not have the numbers back up a statement to say "most" or "a large majority", but I do suspect it is the case) won't have this particular "presentation". Many are bright. Many have unique ways of looking at things and can express that somehow (through writing, speech or drawing) to non-autistic people. Not all of them have both characteristics.
There is a trend now, generally in society, but increasingly in biopics like this, that all persons with disabilities have this or the other barrier/disability/impairment - whatever - which sets them up as an outsider in "normal" society but they invariably have this other ability (frequently so remarkable so as to seem superhuman) which outshines the disability and helps them to earn the respect and admiration of others - showing the "normals" that they are as good or better than the rest.
"Forrest Gump" overcomes physical handicap and mental disability and lives a remarkable, event-filled life (earning the Medal of Honour, no less). John Nash uses his unique viewpoint to earn a Nobel Prize, sidestepping delusions and paranoid schizophrenia along the way, in "A Beautiful Mind". David Helfgott, played by Geoffrey Rush in "Shine", puts aside his mental illness (schizoaffective disorder) to win accolades as a concert pianist (quite aside from the ongoing difficulties of the real life David Helfgott). Raymond Babbit is the "Rain Man" with remarkable powers of recall and mathematics who manages to humanize his selfish brother and win a lot of money through gambling as a bonus.
What worries me about these movies and the popular Hollywood portrayal of mental illness, developmental challenges and disorders like autism is that they show the "minus" column - the challenges, the prejudices, the sensation of being outcast, but there's always a huge "plus" on the other side of the equation - Forrest Gump's tremendous courage, heart and remarkable running ability, John Nash's mathematical "beautiful mind", David Helfgott's piano-playing, Raymond Babbitt's card counting and instant recall. Somehow they're all "savants". They all have superpowers!
Rarely does one see a screen character for whom the equation of their abilities and disabilities are equal... or, heaven forfend, leave them less capable than a person without a disorder.
The wiki article I just linked to about Savants quotes a study by Dr. Darold A. Treffert who indicates that 1 in 10 individuals with autism may exhibit "remarkable abilities in varying degrees". Yes, that's amazing and it should be celebrated... but there's 9 other individuals who aren't Savants. Where are the movies about them? Should it be necessary that all parents of autistic children have to patiently explain to well-meaning strangers that, no, their son/daughter does not have eidetic memory, the ability to see numbers and equations floating in the air and connect them with glowing lines, or play grand pianos with the fingers of a maestro? What about the autistic kids who can't walk down a hallway without bumping into people, or can't read social/visual cues at a birthday party in other kids' faces, or don't know enough to not run into a street if they're having a tantrum about something?
I'm exaggerating a little here, of course. Most people don't have an inkling of what autism is past a single viewing of Rain Man (if that). But so many movies about people with disabilities portray them as paragons of virtue (or, occasionally, embodiments of vice) with these strange, superhuman abilities that I worry that people like Kenshin will never be viewed as people - with strengths and weakness like everyone else - and that they may not have enhanced senses or tremendous gifts. They can just be ordinary (with the "asterisk" of their mental or physical illness or disorder). Do they need the "asterisk"? I don't know. I think so, at this point in my life.
Anyhow, that's a long-winded way of me ranting about the portrayal of disabilities in Hollywood. I don't want anyone to take the idea that people with disabilities/disorders/illnesses shouldn't be portrayed, or should always be venal or self-pitying individuals. They should be real, fully-three dimensional characters with all the good and the evil that implies.
Temple Grandin is/was remarkable. She's a hero and a figure of hope for many. As I look at the potential I see in Kenshin, I'll keep her in mind. "Different, not less" is a good starting point... I would temper that naked optimism with "Different, not less of a person." They may have a lesser ability to read social cues, regulate their behaviour, and establish communications. They MAY have abilities which are better, in their own way. They may not.
That all depends on the individual. Kenshin is very much an individual, and I'm going to treat him as one. I'm not going to expect Savant abilities, but I'm not going to dismiss evidence of them either.
He may be completely ordinary, aside from the autism. Or he may become a world-leading expert on Robotics for all I know, because of his fascination with Wall-E and electronics. I'll be there to help him, if that's what he wants and he's able. Temple Grandin, eat your heart out.
You know, minor editing like that.
Temple Grandin (the movie), to its credit, generally steers away from this sort of hyperbole (mostly). It did make me want to purchase the book to get a better sense of her thought processes and individual challenges away from the screenwriter's (and producers') need to make everything into a drama.
In a nutshell, Temple Grandin (the person) is a woman with autism who uses her particular way of looking at things (she used it as the title of her book "Thinking in Pictures") - as a springboard to an education (and later career) in Animal Science and autism advocacy. To explain much more would spoil some of the more interesting twists and turns of the movie.
It's well acted, and Claire Danes, playing Temple, seems to nail a lot of the mannerisms and "looks" that I've seen Kenshin do. In particular, one scene in which she has a bit of a breakdown over not understanding social cues during a society party, she covered her face with her hands with palms out and interlocked thumbs in front of his nose exactly the way Kenshin does when he's particularly upset. Danes definitely had the "chops" for this role.
The story is definitely quite inspiring while at the same time bittersweet. I can envision Kenshin having to endure much of the same prejudice and misunderstanding that Temple went through as an autistic person who otherwise appears quite normal. I also look forward to encouraging Kenshin to use whatever gifts or strengths he has now or manifests later. I'm very glad that Marli coaxed me into watching it. I'm going to recommend it to others, especially in my family.
That said, I think there are problems with it.
Not to say that it is bad, or the problem is IN the movie itself, but for me it is the expectations that it raises. Temple Grandin is a high-functioning autistic person with an exceptional gift of insight and intelligence. Her way of "thinking in pictures" while not uncommon in autistic individuals, is exceptional because she has learned to articulate and put it into action in engineering applications as well as her psychological research and lecturing.
Even in my very limited exposure to people with autism and understanding of it through reading and research, many, many people with autism (I do not have the numbers back up a statement to say "most" or "a large majority", but I do suspect it is the case) won't have this particular "presentation". Many are bright. Many have unique ways of looking at things and can express that somehow (through writing, speech or drawing) to non-autistic people. Not all of them have both characteristics.
There is a trend now, generally in society, but increasingly in biopics like this, that all persons with disabilities have this or the other barrier/disability/impairment - whatever - which sets them up as an outsider in "normal" society but they invariably have this other ability (frequently so remarkable so as to seem superhuman) which outshines the disability and helps them to earn the respect and admiration of others - showing the "normals" that they are as good or better than the rest.
"Forrest Gump" overcomes physical handicap and mental disability and lives a remarkable, event-filled life (earning the Medal of Honour, no less). John Nash uses his unique viewpoint to earn a Nobel Prize, sidestepping delusions and paranoid schizophrenia along the way, in "A Beautiful Mind". David Helfgott, played by Geoffrey Rush in "Shine", puts aside his mental illness (schizoaffective disorder) to win accolades as a concert pianist (quite aside from the ongoing difficulties of the real life David Helfgott). Raymond Babbit is the "Rain Man" with remarkable powers of recall and mathematics who manages to humanize his selfish brother and win a lot of money through gambling as a bonus.
What worries me about these movies and the popular Hollywood portrayal of mental illness, developmental challenges and disorders like autism is that they show the "minus" column - the challenges, the prejudices, the sensation of being outcast, but there's always a huge "plus" on the other side of the equation - Forrest Gump's tremendous courage, heart and remarkable running ability, John Nash's mathematical "beautiful mind", David Helfgott's piano-playing, Raymond Babbitt's card counting and instant recall. Somehow they're all "savants". They all have superpowers!
Rarely does one see a screen character for whom the equation of their abilities and disabilities are equal... or, heaven forfend, leave them less capable than a person without a disorder.
The wiki article I just linked to about Savants quotes a study by Dr. Darold A. Treffert who indicates that 1 in 10 individuals with autism may exhibit "remarkable abilities in varying degrees". Yes, that's amazing and it should be celebrated... but there's 9 other individuals who aren't Savants. Where are the movies about them? Should it be necessary that all parents of autistic children have to patiently explain to well-meaning strangers that, no, their son/daughter does not have eidetic memory, the ability to see numbers and equations floating in the air and connect them with glowing lines, or play grand pianos with the fingers of a maestro? What about the autistic kids who can't walk down a hallway without bumping into people, or can't read social/visual cues at a birthday party in other kids' faces, or don't know enough to not run into a street if they're having a tantrum about something?
I'm exaggerating a little here, of course. Most people don't have an inkling of what autism is past a single viewing of Rain Man (if that). But so many movies about people with disabilities portray them as paragons of virtue (or, occasionally, embodiments of vice) with these strange, superhuman abilities that I worry that people like Kenshin will never be viewed as people - with strengths and weakness like everyone else - and that they may not have enhanced senses or tremendous gifts. They can just be ordinary (with the "asterisk" of their mental or physical illness or disorder). Do they need the "asterisk"? I don't know. I think so, at this point in my life.
Anyhow, that's a long-winded way of me ranting about the portrayal of disabilities in Hollywood. I don't want anyone to take the idea that people with disabilities/disorders/illnesses shouldn't be portrayed, or should always be venal or self-pitying individuals. They should be real, fully-three dimensional characters with all the good and the evil that implies.
Temple Grandin is/was remarkable. She's a hero and a figure of hope for many. As I look at the potential I see in Kenshin, I'll keep her in mind. "Different, not less" is a good starting point... I would temper that naked optimism with "Different, not less of a person." They may have a lesser ability to read social cues, regulate their behaviour, and establish communications. They MAY have abilities which are better, in their own way. They may not.
That all depends on the individual. Kenshin is very much an individual, and I'm going to treat him as one. I'm not going to expect Savant abilities, but I'm not going to dismiss evidence of them either.
He may be completely ordinary, aside from the autism. Or he may become a world-leading expert on Robotics for all I know, because of his fascination with Wall-E and electronics. I'll be there to help him, if that's what he wants and he's able. Temple Grandin, eat your heart out.
Wednesday, January 25, 2012
Sursum Corda
Marli referenced a book she enjoyed as a child today, "Karen", by Marie Killilea.
She mentioned that the Killilea family named their house "Sursum Corda", which is Latin for "Lift up your hearts".
I think it a terrific and heartening coincidence that one of my favourite quotes from Prime Minister Winston Churchill (who was in turn paraphrasing the Bible) is an excerpt from his June, 1941 address to the Allied Delegates:
Now, I'm not comparing being in the middle class with a decent income and two healthy boys (albeit one with autism) to facing the possibility of all free peoples being conquered by Fascism, but beautifully crafted words with an inspirational message sure can come in handy at times.
Here's a fun version of it set to a catchy beat:
Listen to the rhythm of his words. Amazing.
She mentioned that the Killilea family named their house "Sursum Corda", which is Latin for "Lift up your hearts".
I think it a terrific and heartening coincidence that one of my favourite quotes from Prime Minister Winston Churchill (who was in turn paraphrasing the Bible) is an excerpt from his June, 1941 address to the Allied Delegates:
Lift up your hearts, all will come right. Out of depths of sorrow and sacrifice will be born again the glory of mankind.How's that for a propos?Winston Churchill
Now, I'm not comparing being in the middle class with a decent income and two healthy boys (albeit one with autism) to facing the possibility of all free peoples being conquered by Fascism, but beautifully crafted words with an inspirational message sure can come in handy at times.
Here's a fun version of it set to a catchy beat:
Listen to the rhythm of his words. Amazing.
Tuesday, January 24, 2012
BAD: Potty Humour - GOOD: Writing Down What He Wants
BAD
Kenshin is appending "poop" or the adjective "poopy" to everything. He thinks this is hilarious.
We tell him that "potty words" are not acceptable and punish him (verbal chastisment, corner, room, in that order) but it only seems to encourage him.
I'm thinking it's some manner of attention-getting thing and it's annoying because he definitely knows better. I'm mostly embarrassed that he might be influencing other kids at school or in daycare.
GOOD
Marli was surprised by Kenshin walking up to her and giving her his light up sketch-pad, on which he had written:
The words were a little misshapen, but quite legible. Marli was so impressed that she went to get the camera to record the "sentence" but by the time she returned with the camera he had erased it.
This isn't a communications breakthrough - he can ask for things quite clearly (and does, frequently) already, but it's pretty amazing, all things considered. There was much hugging and positive reinforcement. At least until he abruptly erased the words.
Oh well, next time.
Kenshin is appending "poop" or the adjective "poopy" to everything. He thinks this is hilarious.
We tell him that "potty words" are not acceptable and punish him (verbal chastisment, corner, room, in that order) but it only seems to encourage him.
I'm thinking it's some manner of attention-getting thing and it's annoying because he definitely knows better. I'm mostly embarrassed that he might be influencing other kids at school or in daycare.
GOOD
Marli was surprised by Kenshin walking up to her and giving her his light up sketch-pad, on which he had written:
Watch
Mom
I
want to
TV
please
Mom
I
want to
TV
please
The words were a little misshapen, but quite legible. Marli was so impressed that she went to get the camera to record the "sentence" but by the time she returned with the camera he had erased it.
This isn't a communications breakthrough - he can ask for things quite clearly (and does, frequently) already, but it's pretty amazing, all things considered. There was much hugging and positive reinforcement. At least until he abruptly erased the words.
Oh well, next time.
Monday, January 23, 2012
The Cheese of All Walking
I haven’t posted anything for a while because, to be honest, for a long time I’ve been depressed at the prospect of another glowing report about Daigoro’s progress and yet another month of little to no (perceivable to the casual observer) progress for Kenshin. That sounds overly harsh - I should clarify:
We started having serious concerns about Kenshin’s mental and social development in mid to late 2010. Marli had issues earlier far than that – but I had thought it was just a small delay, well within norms for children and not something we should be overly concerned about. We had suspected something since Spring 2009 or so, but we couldn’t put a finger on it.
Back in Spring of last year (March 2011, as documented), we took him to a paediatrician, who in turn recommended speech therapy and additional testing for autism. We were referred to another specialist in childhood development, who ran Kenshin through a series of tests through the Summer and into Fall and confirmed what Marli had suspected – Kenshin is autistic.
Not Asperger’s Sydrome (apparently now dropped from official medical usage), not “mild” Autism or having an Autism Spectrum Disorder – full, “moderate-level”, “mid-range” autism.
It was a lot to deal with. As I joked to my sister at the time, I had no idea where I was on the Kübler-Ross model of grief. It was (still is!) sort of a roller-coaster ride. Wheee... denial... whoa... acceptance? No.... bargaining! Ooooo... here we come... DEPRESSION!
I’m wondering if I’m thinking I’ve run through it quickly and am already at acceptance, or what I think is acceptance is just an elaborate form of denial.
I know the stages don’t have to be sequential, or indeed, the “Five Stages” may not even be the best conceptualization of the grieving process for everyone. I think right now I’m mostly angry, angry that this has to happen to me, and angry that I’m selfish to think mostly of the effects that it has on me, rather than Marli or the most important person being affected, Kenshin.
Marli and I had a very earnest discussion in September and I tried to be as honest as possible about how I felt, and I was surprised at how selfish I sounded, and said so at the time.
I guess one of my innermost personal failings is sometimes I have a overblown sense of what I think I deserve, and I keep thinking, “Why is this happening to me? I don’t deserve this - I deserve better!” Then I feel guilty about it. Ah, the existentialist post-modern conundrum.
So, internally, I’m mostly shouting “why me?” to myself, and then getting angry about not being concerned enough about the people around me. Then I realize there’s not much to be done about it except to just carry on carrying on and help out Kenshin as much as we can. My family was and is being being very supportive and it’s still early, of course.
Fortunately, we’d been suspecting this for well over a year now before we got the official diagnosis, and wasn’t not as much of a shock as if we had been told of something unexpected, but it’s still a punch in the gut, no matter how much you’re prepared for the blow.
Marli and I share a sort of gallows-humour about a lot of things, so I hope you’ll forgive me if I seem flippant at times. At times I’ve thought to myself, “well, at least it isn’t some terminal illness, like untreatable leukemia, or Tay-Sachs... but at the same time, you don’t have to live with and support a person with a terminal illness for 30, 40, 50 years.” Yes, Kenshin may turn out to be high-functioning enough to live on his own, but he may not, we don’t know.
Marli said at the time, “Well, it could be worse, he could have Tay-Sachs or he could be profoundly autistic. We should be thankful.”
I responded, “Yeah, but that’s like saying, ‘You’ve only gotten a $100 fine. It could have been $2000.’... That may be true, but it’s still a fine.”
I actually have a friend who has an autistic son who went from mid-spectrum in toddler years to high functioning in his pre-teens (he’s 10 now) and we got together to compare experiences and for me to take notes on his approach. He has the advantage of being quite well-off, financially, so it’s a little different for him (he had multi-hour private therapy lessons for his son five days a week, I believe), but I guess I can’t complain when Marli and my combined income is relatively high compared to the “average”.
During this time I couldn’t decide about what to document – this blog had begun as a tool to help me keep track of milestones and moments that otherwise might have passed, forgotten – but now it was becoming a painful reminder of how difficult progress was for Kenshin and how well Daigoro was doing as a normal (dare I say “gifted”?) child. This sounds horrible, but I felt terrible about the apparent favouritism a blog like this would seem to project, “Hey, Daigoro is drawing entire comic books! Oh, and Kenshin has mostly recovered from his relapse with potty training accidents.”
Does that make me a terrible human being? Do I lose my “parent of an autistic child” card now?
This, combined with the extra effort to help teach and entertain Kenshin, had put me into a pretty bad mental state for a long time - probably too long. I let things slide which shouldn’t have slid. I started feeling sorry for myself far too often, which I have done before from time to time, but it was seriously dragging me down. I tried to keep a stiff upper lip, but it was hard. Really hard. Marli suffered as well, perhaps more so, for a variety of reasons.
Anyhow, the long and short of it is sometimes I feel like I’m handling it well, and sometimes I think I’m just bottling it up and at some point the facade’s just going to come crashing down.
Things have slowly started to get better. We enrolled Kenshin in speech therapy shortly after the last blog entry. After six weeks he had made decent progress, learning more social cues and turn taking. More testing followed, at which time the confirmation of his autism was made. A flurry of paperwork and phone calls (mostly handled by Marli) later and Kenshin was on the waiting list for a number of programs, including the local respite services and Applied Behavioural Analysis (ABA) therapy sessions, and we also started to coordinate with his school for special programs available through the school. That’s still in progress.
He started a second round of speech therapy, once again concentrating more on the social/behavioural aspect of speech as opposed to the mechanics of it. His teacher, “S.D.”, was very pleased with his overall progress from the first session to the last, commenting on improved eye contact, initiating contact without prompting and generally understanding the order of events in a social gathering and turn taking.
He finished that last week.
His ABA therapy has been in progress for three weeks (he had to miss a session this past Saturday) and results aren’t yet readily apparent, but it’s good to see from his progress records what goals they are working to and what he’s able to do.
There’s a lot he can do, perhaps better than the “typical” autistic person his age (if such an thing exists), but also a lot he can’t. I’ll try to come up with a short list with Marli’s help.
He’s bright. He can puzzle his way through iPad games with frightening speed and seems to grasp some things quite intuitively, especially how to get at things he wants. You can see the cogs and wheels turning in there – he’s pondering something much of the time.
He’s funny. He laughs frequently (very much not typical for autistic kids) and he has a mischievous grin that is utterly disarming and cute. He says (seemingly) random things, like, when the family is cuddling in the queen bed, calling himself “the cheese of all walking”, Daigoro the “sausage of all skipping”, Marli the “noodle of all hugging” and me the “meat of all looking”.
Or, as we were on our way to Walmart, he said, spontaneously “Walmart and Grommit”!
This past Sunday I took both the boys to a park to go tobogganing. They laughed and ran and sledded and smashed into each other and behaved just like I’d expect a four and six year old to behave. They were having a grand old time. For a moment - just a moment - I forgot that Kenshin is autistic and I just revelled in their happiness and my own happiness about their happiness.
Wiser, more experienced parents of autistic kids would probably say, “That’s exactly the way it should be. Why would you think otherwise?” You should never think your son or daughter as “damaged” or any less worthy of your love because they have a disability; of course not. But is it not human to want to have a “normal” child? Yes, I know people with disabilities hate the “normal” word. I’m going to go ahead and be politically incorrect here. I didn’t want this, I didn’t ask for this. Kenshin, if you’re reading this at some later date, forgive me: I want you to be normal.
As I watched them, my smile faded, and I remembered that I would have to make sure Kenshin went to the bathroom before we left because he wouldn’t think to ask for himself... and that I was going to have to plan for some extra time at the coin-op car wash that I’d promised to take them to because he often doesn’t understand consequences so I’d have to be extra careful about letting him use the spray hose... and I couldn’t just hand him a juice box when we got back to the car because he might oversqueeze it and spray it all over his seat because he thought it was funny... and to make sure he didn’t chew the straw into a pancake of plastic because of his need for oral stimulation... and... and...
A dozen worrisome things popped into my head, swirled around and pushed that shining moment of bliss into the back of my mind. Clouded by shadows of doubt and worry, I lost it.
But I’ve grabbed it again and I’ve written it down here. It was joyous and momentary and all the things that are good and true in life, and it didn’t matter if Kenshin was autistic or not, because I love him so much. I will remember that hill and that moment in all the dark days yet to come.
I'm feeling better now - the therapy and group sessions are ongoing and seem to show promise. Kenshin continues to improve day by day, in tiny, almost imperceptible ways, but over time they add up to progress. I'll try to do my best to observe the little things which might be big steps for him.
I've gotten my head out of the bad space it was in and now I'm trying to push forward with a more optimistic view. He is the cheese of all walking, after all, and it takes a while for the cheese to pick up speed. In the meantime, I'm the meat of all looking.
Whatever that means.
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