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Tutustuin itse tuettuun kommunikointiin vuosina 1989-1993 Biklenin johdolla Syracusen yliopistossa väitöskirjaani tehdessäni. Tein väitöskirjaa suomalaisesta erityisopetusjärjestelmästä, mutta olin samanaikaisesti mukana tuetun kommunikoinnin tutkimusryhmässä kolmen vuoden ajan ja osallistuin instituutin järjestämiin workshopeihin kouluttajana.

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Tutustuin itse tuettuun kommunikointiin vuosina 1989-1993 Biklenin johdolla Syracusen yliopistossa väitöskirjaani tehdessäni. Tein väitöskirjaa suomalaisesta erityisopetusjärjestelmästä, mutta olin samanaikaisesti mukana tuetun kommunikoinnin tutkimusryhmässä kolmen vuoden ajan ja osallistuin instituutin järjestämiin workshopeihin kouluttajana.

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Inside the Autistic Mind

A wealth of new brain research--and poignant testimony from people who have autism--is lifting the veil on this mysterious condition

By CLAUDIA WALLIS

May 15, 2006

The road to Hannah's mind opened a few days before her 13th birthday.

Her parents, therapists, nutritionists and teachers had spent years preparing the way. They had moved mountains to improve her sense of balance, her sensory perception and her overall health. They sent in truckloads of occupational and physical therapy and emotional support. But it wasn't until the fall of 2005 that traffic finally began to flow in the other direction. Hannah, whose speech was limited to snatches of songs, echoed dialogue and unintelligible utterances, is profoundly autistic, and doctors thought she was most likely retarded. But on that October day, after she was introduced to the use of a specialized computer keyboard, Hannah proved them wrong. "Is there anything you'd like to say, Hannah?" asked Marilyn Chadwick, director of training at the Facilitated Communication Institute at Syracuse University.

With Chadwick helping to stabilize her right wrist and her mother watching, a girl thought to be incapable of learning to read or write slowly typed, "I love Mom."

A year and a half later, Hannah sits with her tutor at a small computer desk in her suburban home outside New York City. Facilitated communication is controversial (critics complain that it's often the facilitator who is really communicating), but it has clearly turned Hannah's life around. Since her breakthrough, she no longer spends much of her day watching Sesame Street and Blue's Clues. Instead, she is working her way through high school biology, algebra and ancient history. "It became obvious fairly quickly that she already knew a lot besides how to read," says her tutor, Tonette Jacob.

During the silent years, it seems, Hannah was soaking up vast storehouses of information. The girl without language had an extensive vocabulary, a sense of humor and some unusual gifts. One day, when Jacob presented her with a page of 30 or so math problems, Hannah took one look, then typed all 30 answers. Stunned, Jacob asked, "Do you have a photographic memory?" Hannah typed "Yes."

Like many people with autism, Hannah is so acutely sensitive to sound that she'll catch every word of a conversation occurring elsewhere in the house, which may account for much of her knowledge. She is also hypersensitive to visual input. Gazing directly at things is difficult, so she often relies on her almost preternatural peripheral vision. Hannah's newfound ability to communicate has enabled her intellect to flower, but it also has a dark side: she has become painfully aware of her own autism. Of this, she writes, "Reality hurts."

MORE THAN 60 YEARS AFTER AUTISM WAS first described by American psychiatrist Leo Kanner, there are still more questions than answers about this complex disorder. Its causes are still uncertain, as are the reasons for the rapidly rising incidence of autism in the U.S., Japan, England, Denmark and France. But slowly, steadily, many myths about autism are falling away, as scientists get a better picture of what's going on in the bodies and brains of people with autism and as more of those who are profoundly affected, like Hannah, are able to give voice to their experience. Among the surprises:

• Autism is almost certainly, like cancer, many diseases with many distinct causes. It's well known that there's a wide range in the severity of symptoms--from profound disability to milder forms like Asperger syndrome, in which intellectual ability is generally high but social awareness is low. Indeed, doctors now prefer the term Autistic Spectrum Disorders (ASD). But scientists suspect there are also distinct subtypes, including an early-onset type and a regressive type that can strike as late as age 2.

• Once thought to be mainly a disease of the cerebellum--a region in the back of the brain that integrates sensory and motor activity, autism is increasingly seen as a pervasive problem with the way the brain is wired. The distribution of white matter, the nerve fibers that link diverse parts of the brain, is abnormal, but it's not clear how much is the cause and how much the result of autism.

• The immune system may play a critical role in the development of at least some types of autism. This suggests some new avenues of prevention and treatment.

• Many classic symptoms of autism--spinning, head banging, endlessly repeating phrases--appear to be coping mechanisms rather than hard-wired behaviors. Other classic symptoms--a lack of emotion, an inability to love--can now be largely dismissed as artifacts of impaired communication. The same may be true of the supposedly high incidence of mental retardation.

• The world of autism therapy continues to be bombarded by cure-of-the-day fads. But therapists are beginning to sort out the best ways to intervene. And while autism is generally a lifelong struggle, there are some reported cases in which kids who were identified as autistic and treated at an early age no longer exhibit symptoms.

THE CURIOUS INCIDENCE

DR. THOMAS INSEL, DIRECTOR OF THE National Institute of Mental Health (NIMH), which funds much of the nation's autism research, remembers a time when the disorder was rarely diagnosed. "When my brother trained at Children's Hospital at Harvard in the 1970s, they admitted a child with autism, and the head of the hospital brought all of the residents through to see," says Insel. "He said, 'You've got to see this case; you'll never see it again.'"

Alas, he was mistaken. According to the Centers for Disease Control and Prevention (CDC), about 1 in 166 American children born today will fall somewhere on the autistic spectrum. That's double the rate of 10 years ago and 10 times the estimated incidence a generation ago. While some have doubted the new figures, two surveys released last week by the CDC were in keeping with this shocking incidence.

No one can say why the numbers have soared. Greater awareness and public health campaigns to encourage earlier diagnosis have surely played a part, since in the past, many such children were probably labeled retarded or insane and hidden in institutions. But environmental factors may also be contributing to the spike. To get to the bottom of that mystery and others, federal funding for autism research has more than tripled in the past decade, to $100 million, although it pales in comparison with the estimated $500 million spent on childhood cancers, which affect fewer youngsters.

At the Center for Children's Environmental Health and Disease Prevention at the University of California at Davis, toxicologist Isaac Pessah is studying hair, blood, urine and tissue samples from 700 families with autism. He's testing for 17 metals, traces of pesticides, opioids and other toxicants. In March Pessah caused a stir by releasing a study that showed that even the low level of mercury used in vaccines preserved with thimerosal, long a suspect in autism, can trigger irregularities in the immune-system cells--at least in the test tube. But he does not regard thimerosal (which has been removed from routine childhood vaccines) as anything like a smoking gun. "There's probably no one trigger that's causing autism from the environmental side," says Pessah, "and there's no one gene that's causing it."

Indeed, most researchers believe autism arises from a combination of genetic vulnerabilities and environmental triggers. An identical twin of a child with autism has a 60% to 90% chance of also being affected. And there's little doubt that a vulnerability to ASD runs in some families: the sibling of a child with autism has about a 10% chance of having ASD. Gene scientists working on autism have found suspicious spots on chromosomes 2, 5, 7, 11 and 17, but there are probably dozens of genes at work. "We think there are a number of different autisms, each of which could have a different cause and different genes involved," says David Amaral, research director of the MIND (Medical Investigation of Neurodevelopmental Disorders) Institute, also at U.C. Davis.

Amaral is heading MIND's efforts to assemble a database of clinical, behavioral and genetic information on 1,800 autistic kids. One goal is to clearly define autism subtypes. "It's hard to do the genetics if you're talking about four or five different syndromes," says NIMH chief Insel. "Does the presence of seizures define a separate illness? What about the kids who seem to develop normally for the first year and a half and then regress--is that a separate thing?" And what about the large number of autistic kids who have serious gastrointestinal problems and the many with immune dysfunctions--are they distinct subtypes?

Amaral and colleague Judy Van de Water believe they are onto a major discovery about the origins of at least one type of autism--a strongly familial variety. They have detected aberrant antibodies in the blood of kids from families with a pattern of ASD and, significantly, in mothers with more than one autistic child. "These antibodies are actually raised against proteins in the fetal brain," says Amaral, who recently submitted a paper on the discovery. The working hypothesis is that these antibodies may alter brain development in ways that lead to autism. If correct, the finding could lead to a maternal blood test and the use of a therapy called plasmapheresis to clear antibodies from the mother's blood. "You get a sense of the excitement," says Amaral, "if you could prevent, say, 20% of kids from getting autism. But we don't want to raise false hopes."

THE AUTISTIC BRAIN

WHETHER THE CAUSE IS MATERNAL antibodies, heavy metals or something else, there is no question that the brains of young children with autism have unusual features. To begin with, they tend to be too big. In studies based on magnetic resonance imaging (MRI) and basic tape-measure readings, neuroscientist Eric Courchesne at Children's Hospital of San Diego showed that while children with autism are born with ordinary-size brains, they experience a rapid expansion by age 2--particularly in the frontal lobes. By age 4, says Courchesne, autistic children tend to have brains the size of a normal 13-year-old. This aberrant growth is even more pronounced in girls, he says, although for reasons that remain mysterious, only 1 out of 5 children with autism is female. More recent studies by Amaral and others have found that the amygdala, an area associated with social behavior, is also oversize, a finding Amaral believes is related to the high levels of anxiety seen in as many as 80% of people with autism.

Harvard pediatric neurologist Dr. Martha Herbert reported last year that the excess white matter in autistic brains has a specific distribution: local areas tend to be overconnected, while links between more distant regions of the brain are weak. The brain's right and left hemispheres are also poorly connected. It's as if there are too many competing local services but no long distance.

This observation jibes neatly with imaging studies that look at live brain activity in autistic people. Studies using functional MRI show a lack of coordination among brain regions, says Marcel Just, director of Carnegie Mellon's Center for Cognitive Brain Imaging in Pittsburgh, Pa. Just has scanned dozens of 15- to 35-year-old autistic people with IQs in the normal range, giving them thinking tasks as he monitors their brain activity. "One thing you see," says Just, "is that [activity in] different areas is not going up and down at the same time. There's a lack of synchronization, sort of like a difference between a jam session and a string quartet. In autism, each area does its own thing."

What remains unclear is whether the interconnectivity problem is the result of autism or its cause. Perhaps all that excess wiring is like the extra blood vessels around the heart of a person who has suffered a heart attack--the body's attempt to route around a problem. Or perhaps the abnormal growth of the brain has to do with the immune system; researchers at Johns Hopkins have found signs that autistic brains have chronic inflammation. "It's impossible to tell the chicken from the egg at this point," Just says.

Autistic people have been shown to use their brains in unusual ways: they memorize alphabet characters in a part of the brain that ordinarily processes shapes. They tend to use the visual centers in the back of the brain for tasks usually handled by the prefrontal cortex. They often look at the mouth instead of the eyes of someone who is speaking. Their focus, says psychologist Ami Klin of Yale's Child Study Center, is "not on the social allegiances--for example, the longing gaze of a mother--but physical allegiances--a mouth that moves."

Do these differences reflect fundamental pathology, or are they downstream effects of some more basic problem? No one knows. But the fact that early intervention brings better results for children with ASD could be a clue that some of the odd brain anatomy and activity are secondary--and perhaps even preventable. Studies that look at whether early therapy might help normalize the brain are beginning at York University in Toronto, but results are probably years away.

AUTISM FROM THE INSIDE

IN THE MEANTIME, 300,000 SCHOOL-AGE American children and many adults are attempting to get through daily life with autism. The world has tended to hear from those who are highest functioning, like Temple Grandin, the author and Colorado State University professor of livestock behavior known for designing humane slaughterhouses. But the voices of those more severely affected are beginning to be heard as well. Such was the case with Sue Rubin, 27, a college student from Whittier, Calif., who has no functional speech and matches most people's stereotyped image of a retarded person; yet she was able to write the narration for the Oscar-nominated documentary about her life, Autism Is a World.

What such individuals have to say about their experience is offering new clues to their condition. It also conforms remarkably to what scientists see inside their brains. By and large, people with ASD have difficulty bringing different cognitive functions together in an integrated way. There is a tendency to hyperfocus on detail and miss the big picture. Coordinating volition with movement and sensation can be difficult for some. Chandima Rajapatirana, an autistic writer from Potomac, Md., offers this account: "Helplessly I sit while Mom calls me to come. I know what I must do, but often I can't get up until she says, 'Stand up,'" he writes. "[The] knack of knowing where my body is does not come easy for me. Interestingly I do not know if I am sitting or standing. I am not aware of my body unless it is touching something ... Your hand on mine lets me know where my hand is. Jarring my legs by walking tells me I am alive."

Such descriptions shed light on seemingly self-destructive behavior like biting, scratching, spinning and head banging. For people like Rajapatirana, banging against a wall can be a useful way to tell, quite literally, where their head is at. "Before we extinguish [such behaviors], we need to understand what they are telling us," writes Judith Bluestone, a Seattle-based therapist who is autistic, in The Fabric of Autism.

In his new book Send in the Idiots, British journalist Kamran Nazeer, who is also autistic, describes the need for repetitive motions or words as a search for "local coherence" in a world full of jarring randomness. He also conveys the social difficulties: "Striking up conversations with strangers," he writes, "is an autistic person's version of extreme sports." Indeed, at a recent retreat for people with ASD, attendees wore colored tags indicating their comfort level with spontaneous conversation: red meant don't approach, yellow meant talk if we've already met, green indicated, "I'd love to talk, but I'm not good at initiating."

Perhaps the worst fate for a person with ASD is to have a lively intelligence trapped in a body that makes it difficult for others to see that the lights are on. Neuroscientist Michael Merzenich at the University of California, San Francisco, studied an autistic boy who is unable to speak or even sustain his attention to a task for more than a few moments, and yet is aware of his condition and writes remarkable poetry. How many other autistic kids, Merzenich wonders, "are living in a well where no one can hear them"?

Luckily for Hannah, her voice and thoughts are being heard. Since learning to type, she has begun to speak a few words reliably--"yes," "no" and the key word "I"--to express her desires. All this seems miraculous to her parents. "I was told to give up and get on with my life," says her mother. Now she and her husband are thinking about saving for college.

—With reporting by With reporting by Dan Cray/Los Angeles

Defining Autistic Lives

A review by Cal Montgomery
   

This is the first essay in Cal Montgomery's 3-part series on Medicalization.

Read Essay 2:
Buying Sickness.

Read Essay 3:
The Way Things Are.

"I have autism," Sue Rubin tells us in this documentary about her life. Rubin is a 26-year-old Whittier College junior.

"I decided to make this film to bring people into my world of autism.... 'Autism' is a world so difficult to explain to someone who is not autistic. Someone who can easily turn off the peculiar movements and actions that take over our bodies."

Whatever disagreements I have with what Sue Rubin has to say, I think it's significant that she has been enabled to say it, that she has chosen to say it, and that she has said it to such a wide audience. To do so she's had to get access to technology and training so that she can say it in the first place; she's had to get enough support that she doesn't need to spend all her time just trying to manage the basics of life or even the basics of college life but has time to say it; she's had to organize the assistance of other people to make a documentary; and she's had to ensure that those other people didn't take the documentary over and narrate the same old "Hear Our Silence" stuff that many neurotypicals seem to think is the only story that can be told about autism.

None of this is easy. I am one of the most privileged autistic people I have ever met, and still these sorts of struggles -- plus the big one, staying free -- take over my life with disturbing frequency.

Moreover, she's chosen to do -- and I think done very well -- something that I am only occasionally willing to do: she's described her experience as a person with autism.

Ordinarily, that doesn't interest me at all. Still, when I began to hear about Autism Is a World, I wanted to see it and made sure to stay alert for it to show up on CNN's schedule. I knew Sue Rubin, a woman with autism, had written it, and I knew that Doug Biklen, who has a good reputation, had worked on it as well.

My eagerness receded somewhat when I heard that one of the goals for the film was to raise awareness.

"Awareness" is a word that I heard frequently in conversations about Autism Is a World before anyone I knew had had a chance to see it. Awareness, of course, is a standard goal of almost every book, article, lecture, and documentary about disability: the intended audience is obviously nondisabled, is obviously curious about disability, and cannot be insulted by the suggestion that maybe they're a bit voyeuristic. Nope, they just want to be aware, to understand, to become educated about the sort of people we are. Not the sort of things that are done to us, but the sort of people we are.

People want to be aware, to understand, to become educated about the sort of people we are. Not the sort of things that are done to us, but the sort of people we are. They cannot be insulted by the suggestion that maybe they're a bit voyeuristic.
   

Once they're aware of the sorts of people we are they have basically two options: they can react to us in some special way (special ed, special workshops, special segregation, etc.) that takes our fundamental difference from them into account, or they can lose interest altogether and wander off to do other things. If we make them aware of what is done to us as members of a group, they might join with us in collective action to challenge injustice; but as long as they're only aware of how badly we as individuals fit into the world as it is given to us, they will conclude that the problem isn't social, isn't anything they have a responsibility to oppose, but that the problem is individual and lies in each one of us.

I tend not to cooperate in awareness efforts. I am tired of being what Jim Sinclair calls "a self-narrating zoo exhibit," tired of being told by the neurotypical parents and teachers and professionals who deal with autistic people that my only value is as a sort of reference work they can use to help ensure that a couple of generations from now there is nobody like me on the planet.

It's the hows and whys of disability that really interest me, and I've learned through painful experience that if neurotypicals can get me off the subject of assistive technology and onto the subject of therapies, off the subject of access to society and onto the subject of the techniques of control, and most importantly off the subject of justice and onto a subject of whether I even have the standing to say anything about justice at all, they usually will.

And although I make exceptions to my no-zoo rule, they are rare.

But awareness is not necessarily a bad goal. When it's done well it is a good way for people who know certain things to communicate them to people who, so far, don't know those things.

If awareness was a goal of the filmmakers (and I believe that it was), they have succeeded. W.M "weeza002", for example, writes in an Amazon review that "My future stepson is 23 and autistic, and has always been treated as a [4-year-old], but this show makes me question just how much is going on below the surface. I may just be an optimistic future stepmom, but the thought that there is potentially an intelligent man trapped in that body both scares and gives me hope," directly echoing Sue Rubin's contention that "nonverbal autistic people are intelligent" and demonstrating how that belief is relevant to her own life.

It's also a way for people to challenge what has been shown and said about people like them by others who claim to be the real authorities, and it can be a powerful way for people to transform their lives and others' lives as well -- consider W.M. "weeza002"'s future stepson. There have been times in my life when the power to make other people aware of what the life I was living was like would certainly have transformed mine.

But at the same time that Autism Is a World is a step forward for Rubin, who does not agree with a very great deal that has been said about her, it's also an attempt to say something about me with which I do not agree. Rubin's experience of autism and her beliefs about what it is and what should be done about it are not even close to my own, and when she claims that this is what autism is rather than this is what my experience of autism is, I think she's crossed a line that is well-trodden but, I think, still worth defending.

And here we get into the "high-functioning"/"low-functioning" issue, which is also about who has the right to define what autistic lives are like and what people with autism and autistic people want. Rubin doesn't say in the documentary, but does say elsewhere, that

The rift in the autism community [between those people who do not see themselves as in need of a "cure" and those who do] basically is between what we label high-functioning and low-functioning people. High-functioning people speak and low-functioning people don't. The people with Asperger's [S]yndrome, also a type of autism, love to talk; however, their very narrow areas of interest give them away. These people are the ones who are offended by the idea of a cure. They could pass for normal.... I believe the idea that they should be cured is wrong. They are different, but basically are just a variation of the norm and should be accepted as such. Some even have exceptional abilities that should be celebrated and encouraged.

As a low-functioning autistic person who is still really awash in autism, I actually am aligned with the cure group, although I will not personally benefit if a cure is found. Low-functioning people are just trying to get through the day without hurting, tapping, flailing, biting, screaming, etc. The thought of a gold pot of a potion with a cure really would be wonderful.

If you use Rubin's definition, I'm low-functioning: I don't speak. Like Rubin, I use augmentative communication. Like her, I engage in self-injurious behavior (SIB). She started with facilitated communication and progressed to independent typing; I've never used a facilitator. (Not that that stops some people from assuming that all autistic typists are using FC -- check out all the comments at Amazon for some examples -- and that therefore someone else is controlling everything I type.)

If anyone knows where I can get an old wooden Ouija board to use as a letterboard, as a private joke, I'd love to hear about it.

Like Rubin, I have at times had some official, and powerful, and very pessimistic prognoses -- although mine, unlike hers, came only after I had achieved enough that people were willing to overlook what the professionals say. That bought me a lot of chances that many autistic people never get. On the other hand, her IQ test score is much higher than mine, and in a society that assumes that there is such a thing as g (general intelligence) which everybody possesses in some degree and that determines where we belong in life, and that you can measure g with an IQ test, that's significant too. So, using some criteria, she's high-functioning and I'm not ... or at least borderline not.

I managed language a lot younger, and my speech, at its peak, was very good. In my earliest memory I am upset about something my parents told me; I missed a whole lot of what was said in my presence or even to me and I still do, but I got some of it, and I've been a pretty decent reader since I was young. Rubin did not have a way to communicate until she was 13. So maybe I'm high-functioning and she's not. Or maybe, since she can at least voice words (more than that, she uses some spoken words and phrases communicatively) and I no longer can, she's lower-functioning than I was and higher-functioning than I am. Or maybe, since I type faster, I'm higher-functioning.

Rubin can clearly tolerate a lot more social interaction and especially more touch than I can; she also clearly has a lot more support than I do. I get by. I'm not complaining. I'm not locked up any more; nobody gets to define food, water, access to a toilet, and privacy as "privileges" and take them away if I'm not "good" any more. But when, in Autism Is a World, they explain why she gets round-the-clock support services (I get none at all, though I do live with a roommate who is not compensated for my presence), they are describing me as well as her. And she's very obviously much better integrated into her community than I am: the day someone delivers my groceries is the big social highlight of most 14-day cycles.
   

Why did I do this?
At this point, most of the people who know me are probably wondering whether this piece is my work at all. What I've written in this section is not the sort of thing I will ordinarily commit to print, and I've become more and more reluctant to even have this discussion with parents and professionals. But I'm really not sure how I can write about Autism Is a World without writing this section.

Then again, we are -- right now, anyway -- both identified as "bright" by a whole lot of people who clearly believe that some other people are "mentally retarded" according to the usual stereotypes. Rubin herself doesn't come right out and say it, but the impression she gives is that she, unlike some other people, is not mentally retarded. We are both clearly capable (except to those people who refuse to believe that autistic people using keyboards are "saying" anything at all and, in my case, those people who believe that anyone with an IQ score under 85 is by definition incapable) of benefiting from formal education. So maybe we're both high-functioning.

I've watched people -- professionals and institutionalized persons, and people I once counted as family members and friends -- react as I rapidly slid across the lines they were using to mark the boundary between "high-functioning" and "low-functioning" (or "acute" and "chronic"). It wasn't pretty. They condoned my being gang-raped, my being beaten, my being denied food and water and access to a toilet and even a heated room in the Yankee winter nights, and then when they had allowed my life to be well and truly wrecked they left me alone to deal with the wreckage.

After a series of accidents (mainly insurance and fire) made it possible, I bluffed my way back across the line, pretending that five years of my life had somehow never happened, and sometimes lying outright until after they had come to know me as a "high-functioning person."

I've watched people -- mostly people who consider themselves to be supporters of disability rights -- react to me as my ability to control my body deteriorated again and I slowly slipped across whatever lines they were using to mark the boundary between "high-functioning" and "low-functioning." A lot of them can't handle it. If they're very polite they make some kind of excuse, but either way most of them are no longer in my life.

Given that those lines are there I am grateful I had a chance to be regarded as fully human for awhile; because it bolsters my own sense that I am indeed fully human and possess the same basic human rights as other people. But I am more grateful for the people whose friendship has not recognized the lines at all; and I wish that together the disability communities could erase all of these lines and value us all.

Here are some of my problems with the "high-functioning"/"low-functioning" thing.

One is that it tends to elevate one particular part of our functioning -- speech, language, social interaction, managing our activities of daily living unassisted, whatever -- to the most important and to judge us by that one criterion.
   

I don't believe you can meaningfully separate autistic people into "high-" and "low-functioning."

Society chooses which traits and behaviors to prize and which traits and behaviors "they" have to show in order to be considered fully human. When it then passes judgment, it obscures those choices by focusing on the people being judged. Moreover, these most-important criteria are always believed to be individual traits and in no way determined by society's "we." Why not look at the fact that both Rubin and I have more chances to choose how our lives are going to go than do many autistic people, including some who speak and some who don't, and call us both "high-functioning" on that basis?

The "high"/low" distinction seems very often to be an expression of personal values and of personal value. There's no real reason to choose one way of splitting us up over the others.

Another problem I have with the "high-functioning"/"low-functioning" divide is that the distinction is frequently used to discredit one group, and to regard the opinions of the other group as binding for all of us. Rubin, for example, finds it "offensive" that some "high-functioning" people regard autism as a difference and not something to be cured. I hear that claim a lot more from neurotypical people than from autistic ones. One of the usual distinctions that gets made is this: if you are capable of making your opinions known, then you're obviously not autistic, because autistic people can't communicate. And if you're not autistic, obviously you aren't qualified to pontificate on what autistic people believe (shortened to: if you are capable of making your opinions known, you aren't qualified to have them).

The argument that some people are better off than others, and that those who are better off shouldn't be given carte blanche to decide what the others should or shouldn't want, is a good one, however.

But it goes both ways. Many of those "high-functioning" people mount exactly the same argument, finding it offensive that a lot of neurotypical and some "low-functioning" people insist that it is not okay to be autistic, and that they justify a lot of behavior that autistic-and-proud people regard as abusive, in the name of "helping" autistic people. (At one point in the film, spoons -- which Rubin finds comforting -- are taken away, and Rubin is told she can only have them back if she does what the support worker wants. I'm a survivor of institutions: anyone who tries that sort of thing on me on me is in for a very frustrating interaction.)

Society chooses which traits and behaviors to prize -- which traits and behaviors we must exhibit in order to be considered fully human.
   

The "high"/low" distinction seems very often to be reducible to a rights/cure distinction: it's about our political positions. I don't believe you can meaningfully separate autistic people into "high-" and "low-functioning" in the first place, but if you can it's not by comparing their political opinions.

A third problem with the distinction is that it's used to try to prioritize support for some people over support for others. If you've ever dealt with an independent living center that points to government figures estimating that 1 in 5 Americans has a disability when asking for money, but uses a much stricter definition of "disability" when spending money, you're familiar with the general outline of this problem. Either "high-functioning" autistics should get the money because they're the ones who can benefit the most, or "low-functioning" people with autism should get it because they're the ones who are most in need.

The high/low distinction seems very often to be reducible to a fight over resources. The U. S. is rich enough to meet the basic needs of all its disabled people (including removing barriers that keep disabled people from contributing to the country's wealth), and if it isn't providing disabled people with adequate resources, the answer is solidarity in the face of injustice that affects all of us, not trying to grab crumbs from one another.

Then there's the way the distinction is used to determine the sorts of benefits society is prepared to offer. Just as many people believe that it's the "high-functioning" crowd that wants rights and the "low-functioning" bunch that wants cures, parents who want inclusive education and integrated housing are assumed to be raising "high-functioning" children, and parents who do not believe that adequate services can be provided except in separate settings are assumed to be raising "low-functioning" children. Parents of "high-functioning" adults may want job trainers and supported employment; parents of "low-functioning" adults may want day programs that focus on social and habilitative goals.

The high/low distinction seems very often to be a fight over the kinds of lives made available to autistic people.

Consider this: disabled people are disadvantaged within society. That disadvantage is believed by most members of that society to be a natural consequence of individual physical and mental deficits which are properly considered medical problems.

Let me get back, now, to what autism is to Sue Rubin.

"Autism is a constant struggle." It's "awful."

She talks about "killer autism behaviors" and shows us her helmet. Literally, of course, headbanging can kill you, but Rubin is also pointing out that autistic behavior has the power to kill her connection to the world. She spent 13 years without the ability to communicate, and during that time she also had real difficulty understanding what was going on around her.
   

Rubin appears to believe that the problem is that autism limits her ability to function in the world, whereas I believe that the problem is that the world is set up for neurotypical nondisabled people.

"I want to know why I do weird autistic things I don't want to," says Rubin, as she is shown on screen visiting Margaret Bauman, an "expert on the neurobiology of autism at Harvard." "What is autism?" she asks Bauman.

"We don't have all the answers," Bauman tells her, but they believe that it's got something to do with the "wiring" in the brain.

Having autism, says Rubin, is different from being retarded. "Retarded" (or "feebleminded") appears to Rubin to be a kind of person. She hates being mistakenly thought to be "retarded." (One "weird autistic behavior" Rubin willingly does even though she thinks it helps to make her look "retarded" is to carry spoons with her. It's calming.)

Her family believed, until she was 13, that she was "retarded" and Rubin agrees that that was a reasonable belief, based on her behavior. Moreover, she thinks that maybe she was "retarded" -- until she could communicate she couldn't understand the world. When she was 13, however, someone began trying FC with her. "My mind began to wake up." Now, she says, she's definitely not "retarded."

I, on the other hand, see myself as an autistic person. The behaviors and experiences that get me labeled "autistic" are, I think, part of me. I want to change some of them, sure. I want to not hurt myself (or at least manage to only do it when I'm alone), and it frustrates me that I am getting worse at that. I want to always manage to get my helmet on before I hit my head on something. I want enough motor control to type on my communication device and navigate my powerchair whenever I'm out. I also want to understand the writings of Michel Foucault, to stop cursing so much, and to make friends where I live. And I want a dog.

Think, for a moment, about the move from seeing oneself as a disabled person to seeing oneself as a person with a disability. Rubin, here, has moved from being a retarded person to a person with autism, but many people keep the same basic diagnosis: a retarded person becomes a person with mental retardation (and then, often, a person who has been labeled "mentally retarded"), or an autistic person becomes a person with autism.

Disability stops being the kind of person you are, and instead becomes a thing that is separate from you, and that you have. It stops being a major determinant of your chances in life, and instead becomes one inability or a few related inabilities in the large constellation of abilities and inabilities that a person possesses. Many people with autism have made that move; others have learned from the outset that they are people with autism from parents and teachers.

With that shift comes an acknowledgment of potential. While Rubin "had to prove that [she] was a capable student," she is now benefiting from having proven that. Other disabled people who have become people with disabilities have come to recognize their own potential and have potential recognized in them by people without disabilities.

Some of us resist that step. We do not believe that autism is a thing that we have. "Autism is not a peripheral feature," writes A.M. Baggs, "that I can discard. Autism shapes my mind, my personality, my senses, my values, my goals, and my dreams. Autism is the source of my difficulties and my strengths, and of the unbreakable ties between them. Autism is a significant, dominant, and irrevocable part of what makes me, and my closest friends, unique."

Rubin notes that "nonverbal autistic people are not given an opportunity to show their intelligence." Baggs says that, too, and so do I, although all three of us are given more chances than are many of our "peers" (and all three of us know that); and although all three of us are given more chances now than we have had at some times in the past.

All of us make the connection between inadequate support systems and our lives falling apart. All of us worry about our futures.

But where Rubin appears to believe that the problem is that autism limits her ability to function in the world, I believe that the problem is that the world is set up for neurotypical nondisabled people. I believe that the problem is that most people take for granted the way the world is. I believe that the problem is that they identify "defects" in individual autistic people, that they presume that these defects are somehow medical in nature, and then, having diagnosed autistic people's failure to manage in the world as an individual medical problem that happens to show up in a whole lot of us, they conclude that medical professionals should be curing -- or at least controlling -- us. And having made that conclusion, they continue to accept or support ways of living that shut us out.

Will I buy a copy of this DVD? Probably not. Will I recommend it to people who want to know more about the various perspectives different autistic people express, or about the value of augmentative communication, or about the fundamental humanity of people who behave very differently than do most of my neighbors? Absolutely. It's a well-done film that expresses a valuable perspective, and one that needs to be taken into account. It's a direct attack on some of the most damaging ideas about autism, and it's a powerful statement about the value of communication.

Posted 6/30/2005

Cal Montgomery is autistic. She has written for Our Voices, the newsletter of Autism Network International and has presented at ANI's annual conference, Autreat. She also writes for Ragged Edge.

Autistic Lives kirjoitti:

Defining Autistic Lives

A review by Cal Montgomery
   

This is the first essay in Cal Montgomery's 3-part series on Medicalization.

Read Essay 2:
Buying Sickness.

Read Essay 3:
The Way Things Are.

"I have autism," Sue Rubin tells us in this documentary about her life. Rubin is a 26-year-old Whittier College junior.

"I decided to make this film to bring people into my world of autism.... 'Autism' is a world so difficult to explain to someone who is not autistic. Someone who can easily turn off the peculiar movements and actions that take over our bodies."

Whatever disagreements I have with what Sue Rubin has to say, I think it's significant that she has been enabled to say it, that she has chosen to say it, and that she has said it to such a wide audience. To do so she's had to get access to technology and training so that she can say it in the first place; she's had to get enough support that she doesn't need to spend all her time just trying to manage the basics of life or even the basics of college life but has time to say it; she's had to organize the assistance of other people to make a documentary; and she's had to ensure that those other people didn't take the documentary over and narrate the same old "Hear Our Silence" stuff that many neurotypicals seem to think is the only story that can be told about autism.

None of this is easy. I am one of the most privileged autistic people I have ever met, and still these sorts of struggles -- plus the big one, staying free -- take over my life with disturbing frequency.

Moreover, she's chosen to do -- and I think done very well -- something that I am only occasionally willing to do: she's described her experience as a person with autism.

Ordinarily, that doesn't interest me at all. Still, when I began to hear about Autism Is a World, I wanted to see it and made sure to stay alert for it to show up on CNN's schedule. I knew Sue Rubin, a woman with autism, had written it, and I knew that Doug Biklen, who has a good reputation, had worked on it as well.

My eagerness receded somewhat when I heard that one of the goals for the film was to raise awareness.

"Awareness" is a word that I heard frequently in conversations about Autism Is a World before anyone I knew had had a chance to see it. Awareness, of course, is a standard goal of almost every book, article, lecture, and documentary about disability: the intended audience is obviously nondisabled, is obviously curious about disability, and cannot be insulted by the suggestion that maybe they're a bit voyeuristic. Nope, they just want to be aware, to understand, to become educated about the sort of people we are. Not the sort of things that are done to us, but the sort of people we are.

People want to be aware, to understand, to become educated about the sort of people we are. Not the sort of things that are done to us, but the sort of people we are. They cannot be insulted by the suggestion that maybe they're a bit voyeuristic.
   

Once they're aware of the sorts of people we are they have basically two options: they can react to us in some special way (special ed, special workshops, special segregation, etc.) that takes our fundamental difference from them into account, or they can lose interest altogether and wander off to do other things. If we make them aware of what is done to us as members of a group, they might join with us in collective action to challenge injustice; but as long as they're only aware of how badly we as individuals fit into the world as it is given to us, they will conclude that the problem isn't social, isn't anything they have a responsibility to oppose, but that the problem is individual and lies in each one of us.

I tend not to cooperate in awareness efforts. I am tired of being what Jim Sinclair calls "a self-narrating zoo exhibit," tired of being told by the neurotypical parents and teachers and professionals who deal with autistic people that my only value is as a sort of reference work they can use to help ensure that a couple of generations from now there is nobody like me on the planet.

It's the hows and whys of disability that really interest me, and I've learned through painful experience that if neurotypicals can get me off the subject of assistive technology and onto the subject of therapies, off the subject of access to society and onto the subject of the techniques of control, and most importantly off the subject of justice and onto a subject of whether I even have the standing to say anything about justice at all, they usually will.

And although I make exceptions to my no-zoo rule, they are rare.

But awareness is not necessarily a bad goal. When it's done well it is a good way for people who know certain things to communicate them to people who, so far, don't know those things.

If awareness was a goal of the filmmakers (and I believe that it was), they have succeeded. W.M "weeza002", for example, writes in an Amazon review that "My future stepson is 23 and autistic, and has always been treated as a [4-year-old], but this show makes me question just how much is going on below the surface. I may just be an optimistic future stepmom, but the thought that there is potentially an intelligent man trapped in that body both scares and gives me hope," directly echoing Sue Rubin's contention that "nonverbal autistic people are intelligent" and demonstrating how that belief is relevant to her own life.

It's also a way for people to challenge what has been shown and said about people like them by others who claim to be the real authorities, and it can be a powerful way for people to transform their lives and others' lives as well -- consider W.M. "weeza002"'s future stepson. There have been times in my life when the power to make other people aware of what the life I was living was like would certainly have transformed mine.

But at the same time that Autism Is a World is a step forward for Rubin, who does not agree with a very great deal that has been said about her, it's also an attempt to say something about me with which I do not agree. Rubin's experience of autism and her beliefs about what it is and what should be done about it are not even close to my own, and when she claims that this is what autism is rather than this is what my experience of autism is, I think she's crossed a line that is well-trodden but, I think, still worth defending.

And here we get into the "high-functioning"/"low-functioning" issue, which is also about who has the right to define what autistic lives are like and what people with autism and autistic people want. Rubin doesn't say in the documentary, but does say elsewhere, that

The rift in the autism community [between those people who do not see themselves as in need of a "cure" and those who do] basically is between what we label high-functioning and low-functioning people. High-functioning people speak and low-functioning people don't. The people with Asperger's [S]yndrome, also a type of autism, love to talk; however, their very narrow areas of interest give them away. These people are the ones who are offended by the idea of a cure. They could pass for normal.... I believe the idea that they should be cured is wrong. They are different, but basically are just a variation of the norm and should be accepted as such. Some even have exceptional abilities that should be celebrated and encouraged.

As a low-functioning autistic person who is still really awash in autism, I actually am aligned with the cure group, although I will not personally benefit if a cure is found. Low-functioning people are just trying to get through the day without hurting, tapping, flailing, biting, screaming, etc. The thought of a gold pot of a potion with a cure really would be wonderful.

If you use Rubin's definition, I'm low-functioning: I don't speak. Like Rubin, I use augmentative communication. Like her, I engage in self-injurious behavior (SIB). She started with facilitated communication and progressed to independent typing; I've never used a facilitator. (Not that that stops some people from assuming that all autistic typists are using FC -- check out all the comments at Amazon for some examples -- and that therefore someone else is controlling everything I type.)

If anyone knows where I can get an old wooden Ouija board to use as a letterboard, as a private joke, I'd love to hear about it.

Like Rubin, I have at times had some official, and powerful, and very pessimistic prognoses -- although mine, unlike hers, came only after I had achieved enough that people were willing to overlook what the professionals say. That bought me a lot of chances that many autistic people never get. On the other hand, her IQ test score is much higher than mine, and in a society that assumes that there is such a thing as g (general intelligence) which everybody possesses in some degree and that determines where we belong in life, and that you can measure g with an IQ test, that's significant too. So, using some criteria, she's high-functioning and I'm not ... or at least borderline not.

I managed language a lot younger, and my speech, at its peak, was very good. In my earliest memory I am upset about something my parents told me; I missed a whole lot of what was said in my presence or even to me and I still do, but I got some of it, and I've been a pretty decent reader since I was young. Rubin did not have a way to communicate until she was 13. So maybe I'm high-functioning and she's not. Or maybe, since she can at least voice words (more than that, she uses some spoken words and phrases communicatively) and I no longer can, she's lower-functioning than I was and higher-functioning than I am. Or maybe, since I type faster, I'm higher-functioning.

Rubin can clearly tolerate a lot more social interaction and especially more touch than I can; she also clearly has a lot more support than I do. I get by. I'm not complaining. I'm not locked up any more; nobody gets to define food, water, access to a toilet, and privacy as "privileges" and take them away if I'm not "good" any more. But when, in Autism Is a World, they explain why she gets round-the-clock support services (I get none at all, though I do live with a roommate who is not compensated for my presence), they are describing me as well as her. And she's very obviously much better integrated into her community than I am: the day someone delivers my groceries is the big social highlight of most 14-day cycles.
   

Why did I do this?
At this point, most of the people who know me are probably wondering whether this piece is my work at all. What I've written in this section is not the sort of thing I will ordinarily commit to print, and I've become more and more reluctant to even have this discussion with parents and professionals. But I'm really not sure how I can write about Autism Is a World without writing this section.

Then again, we are -- right now, anyway -- both identified as "bright" by a whole lot of people who clearly believe that some other people are "mentally retarded" according to the usual stereotypes. Rubin herself doesn't come right out and say it, but the impression she gives is that she, unlike some other people, is not mentally retarded. We are both clearly capable (except to those people who refuse to believe that autistic people using keyboards are "saying" anything at all and, in my case, those people who believe that anyone with an IQ score under 85 is by definition incapable) of benefiting from formal education. So maybe we're both high-functioning.

I've watched people -- professionals and institutionalized persons, and people I once counted as family members and friends -- react as I rapidly slid across the lines they were using to mark the boundary between "high-functioning" and "low-functioning" (or "acute" and "chronic"). It wasn't pretty. They condoned my being gang-raped, my being beaten, my being denied food and water and access to a toilet and even a heated room in the Yankee winter nights, and then when they had allowed my life to be well and truly wrecked they left me alone to deal with the wreckage.

After a series of accidents (mainly insurance and fire) made it possible, I bluffed my way back across the line, pretending that five years of my life had somehow never happened, and sometimes lying outright until after they had come to know me as a "high-functioning person."

I've watched people -- mostly people who consider themselves to be supporters of disability rights -- react to me as my ability to control my body deteriorated again and I slowly slipped across whatever lines they were using to mark the boundary between "high-functioning" and "low-functioning." A lot of them can't handle it. If they're very polite they make some kind of excuse, but either way most of them are no longer in my life.

Given that those lines are there I am grateful I had a chance to be regarded as fully human for awhile; because it bolsters my own sense that I am indeed fully human and possess the same basic human rights as other people. But I am more grateful for the people whose friendship has not recognized the lines at all; and I wish that together the disability communities could erase all of these lines and value us all.

Here are some of my problems with the "high-functioning"/"low-functioning" thing.

One is that it tends to elevate one particular part of our functioning -- speech, language, social interaction, managing our activities of daily living unassisted, whatever -- to the most important and to judge us by that one criterion.
   

I don't believe you can meaningfully separate autistic people into "high-" and "low-functioning."

Society chooses which traits and behaviors to prize and which traits and behaviors "they" have to show in order to be considered fully human. When it then passes judgment, it obscures those choices by focusing on the people being judged. Moreover, these most-important criteria are always believed to be individual traits and in no way determined by society's "we." Why not look at the fact that both Rubin and I have more chances to choose how our lives are going to go than do many autistic people, including some who speak and some who don't, and call us both "high-functioning" on that basis?

The "high"/low" distinction seems very often to be an expression of personal values and of personal value. There's no real reason to choose one way of splitting us up over the others.

Another problem I have with the "high-functioning"/"low-functioning" divide is that the distinction is frequently used to discredit one group, and to regard the opinions of the other group as binding for all of us. Rubin, for example, finds it "offensive" that some "high-functioning" people regard autism as a difference and not something to be cured. I hear that claim a lot more from neurotypical people than from autistic ones. One of the usual distinctions that gets made is this: if you are capable of making your opinions known, then you're obviously not autistic, because autistic people can't communicate. And if you're not autistic, obviously you aren't qualified to pontificate on what autistic people believe (shortened to: if you are capable of making your opinions known, you aren't qualified to have them).

The argument that some people are better off than others, and that those who are better off shouldn't be given carte blanche to decide what the others should or shouldn't want, is a good one, however.

But it goes both ways. Many of those "high-functioning" people mount exactly the same argument, finding it offensive that a lot of neurotypical and some "low-functioning" people insist that it is not okay to be autistic, and that they justify a lot of behavior that autistic-and-proud people regard as abusive, in the name of "helping" autistic people. (At one point in the film, spoons -- which Rubin finds comforting -- are taken away, and Rubin is told she can only have them back if she does what the support worker wants. I'm a survivor of institutions: anyone who tries that sort of thing on me on me is in for a very frustrating interaction.)

Society chooses which traits and behaviors to prize -- which traits and behaviors we must exhibit in order to be considered fully human.
   

The "high"/low" distinction seems very often to be reducible to a rights/cure distinction: it's about our political positions. I don't believe you can meaningfully separate autistic people into "high-" and "low-functioning" in the first place, but if you can it's not by comparing their political opinions.

A third problem with the distinction is that it's used to try to prioritize support for some people over support for others. If you've ever dealt with an independent living center that points to government figures estimating that 1 in 5 Americans has a disability when asking for money, but uses a much stricter definition of "disability" when spending money, you're familiar with the general outline of this problem. Either "high-functioning" autistics should get the money because they're the ones who can benefit the most, or "low-functioning" people with autism should get it because they're the ones who are most in need.

The high/low distinction seems very often to be reducible to a fight over resources. The U. S. is rich enough to meet the basic needs of all its disabled people (including removing barriers that keep disabled people from contributing to the country's wealth), and if it isn't providing disabled people with adequate resources, the answer is solidarity in the face of injustice that affects all of us, not trying to grab crumbs from one another.

Then there's the way the distinction is used to determine the sorts of benefits society is prepared to offer. Just as many people believe that it's the "high-functioning" crowd that wants rights and the "low-functioning" bunch that wants cures, parents who want inclusive education and integrated housing are assumed to be raising "high-functioning" children, and parents who do not believe that adequate services can be provided except in separate settings are assumed to be raising "low-functioning" children. Parents of "high-functioning" adults may want job trainers and supported employment; parents of "low-functioning" adults may want day programs that focus on social and habilitative goals.

The high/low distinction seems very often to be a fight over the kinds of lives made available to autistic people.

Consider this: disabled people are disadvantaged within society. That disadvantage is believed by most members of that society to be a natural consequence of individual physical and mental deficits which are properly considered medical problems.

Let me get back, now, to what autism is to Sue Rubin.

"Autism is a constant struggle." It's "awful."

She talks about "killer autism behaviors" and shows us her helmet. Literally, of course, headbanging can kill you, but Rubin is also pointing out that autistic behavior has the power to kill her connection to the world. She spent 13 years without the ability to communicate, and during that time she also had real difficulty understanding what was going on around her.
   

Rubin appears to believe that the problem is that autism limits her ability to function in the world, whereas I believe that the problem is that the world is set up for neurotypical nondisabled people.

"I want to know why I do weird autistic things I don't want to," says Rubin, as she is shown on screen visiting Margaret Bauman, an "expert on the neurobiology of autism at Harvard." "What is autism?" she asks Bauman.

"We don't have all the answers," Bauman tells her, but they believe that it's got something to do with the "wiring" in the brain.

Having autism, says Rubin, is different from being retarded. "Retarded" (or "feebleminded") appears to Rubin to be a kind of person. She hates being mistakenly thought to be "retarded." (One "weird autistic behavior" Rubin willingly does even though she thinks it helps to make her look "retarded" is to carry spoons with her. It's calming.)

Her family believed, until she was 13, that she was "retarded" and Rubin agrees that that was a reasonable belief, based on her behavior. Moreover, she thinks that maybe she was "retarded" -- until she could communicate she couldn't understand the world. When she was 13, however, someone began trying FC with her. "My mind began to wake up." Now, she says, she's definitely not "retarded."

I, on the other hand, see myself as an autistic person. The behaviors and experiences that get me labeled "autistic" are, I think, part of me. I want to change some of them, sure. I want to not hurt myself (or at least manage to only do it when I'm alone), and it frustrates me that I am getting worse at that. I want to always manage to get my helmet on before I hit my head on something. I want enough motor control to type on my communication device and navigate my powerchair whenever I'm out. I also want to understand the writings of Michel Foucault, to stop cursing so much, and to make friends where I live. And I want a dog.

Think, for a moment, about the move from seeing oneself as a disabled person to seeing oneself as a person with a disability. Rubin, here, has moved from being a retarded person to a person with autism, but many people keep the same basic diagnosis: a retarded person becomes a person with mental retardation (and then, often, a person who has been labeled "mentally retarded"), or an autistic person becomes a person with autism.

Disability stops being the kind of person you are, and instead becomes a thing that is separate from you, and that you have. It stops being a major determinant of your chances in life, and instead becomes one inability or a few related inabilities in the large constellation of abilities and inabilities that a person possesses. Many people with autism have made that move; others have learned from the outset that they are people with autism from parents and teachers.

With that shift comes an acknowledgment of potential. While Rubin "had to prove that [she] was a capable student," she is now benefiting from having proven that. Other disabled people who have become people with disabilities have come to recognize their own potential and have potential recognized in them by people without disabilities.

Some of us resist that step. We do not believe that autism is a thing that we have. "Autism is not a peripheral feature," writes A.M. Baggs, "that I can discard. Autism shapes my mind, my personality, my senses, my values, my goals, and my dreams. Autism is the source of my difficulties and my strengths, and of the unbreakable ties between them. Autism is a significant, dominant, and irrevocable part of what makes me, and my closest friends, unique."

Rubin notes that "nonverbal autistic people are not given an opportunity to show their intelligence." Baggs says that, too, and so do I, although all three of us are given more chances than are many of our "peers" (and all three of us know that); and although all three of us are given more chances now than we have had at some times in the past.

All of us make the connection between inadequate support systems and our lives falling apart. All of us worry about our futures.

But where Rubin appears to believe that the problem is that autism limits her ability to function in the world, I believe that the problem is that the world is set up for neurotypical nondisabled people. I believe that the problem is that most people take for granted the way the world is. I believe that the problem is that they identify "defects" in individual autistic people, that they presume that these defects are somehow medical in nature, and then, having diagnosed autistic people's failure to manage in the world as an individual medical problem that happens to show up in a whole lot of us, they conclude that medical professionals should be curing -- or at least controlling -- us. And having made that conclusion, they continue to accept or support ways of living that shut us out.

Will I buy a copy of this DVD? Probably not. Will I recommend it to people who want to know more about the various perspectives different autistic people express, or about the value of augmentative communication, or about the fundamental humanity of people who behave very differently than do most of my neighbors? Absolutely. It's a well-done film that expresses a valuable perspective, and one that needs to be taken into account. It's a direct attack on some of the most damaging ideas about autism, and it's a powerful statement about the value of communication.

Posted 6/30/2005

Cal Montgomery is autistic. She has written for Our Voices, the newsletter of Autism Network International and has presented at ANI's annual conference, Autreat. She also writes for Ragged Edge.

Lue lisää

Understand Facilitated Communcations and Understand the Soul

By Yechiel Sitzman and the J Mag staff
Facilitated communication is a method of communication with those autistic and other brain restricted individuals that is gaining popularity. Autistic children, who are frequently diagnosed as retarded due to their inability to communicate and function in the conventional manner. There, however, is a difference between autistic children and retarded children. Mentally retarded children will often show much desire to communicate with those around them, however, they do not possess sharp intellectual skills. Autistic children, on the other hand, show little overt desire to communicate with those around them, yet they may be highly intelligent individuals. Caution must be taken in applying these general rules as specific and exacting definitions.

Until recently, the autistic child was grouped as mentally retarded. Approximately 20 years ago research began to realize that there was a difference between the two types of children. A pioneer in this field was Rosemary Crossely who began using a method of communication which involved using a flat alphabet chart. By holding her hand on the autistic child's hand and enabling the child to point to letters on the chart, the child was able to communicate to her. This method became known as facilitated communication.

What became interesting to note was that beside the fact that children who until now were not able to communicate even to their parents, became able to express their thoughts and desires. Although they had previously been considered mentally incompetent, due to this new method of communication, they now were able to answer clearly questions placed to them. Many children exhibited high intelligence and knowledge in many facets of worldly knowledge that were unexplainable. How could children who, due to their condition, had received little education, yet know so much about the world around them?

Many autistic children have even been able to predict future events, events that they could not possibly have known about. Many researchers have been amazed at the ability of autistic children to to know things that these children simply had no logical way of knowing.

In order to solve this problem, it is necessary to understand how the brain functions and it's relationship to the soul.

In the normal, person the ideas which come from with out the person are assimilated into the mind of the person. The soul has very little influence on the person, other than providing it's vitality and animation. In an autistic child, there seems to be a split between the body and its desires and the brain and its desires. The body and the brain seem to be opposed in their desires. The body seems to prevent the brain from using the body for means of expressing itself. The mind can not seem to get the body to do its will. In a normal person, conflict between the mind and the body is normal; but it does not interrupt the person to carry out life. In the autistic child, the split between the mind and body have crippled the ability of the person to function.

Aldous Huxley , the famed philosopher and author wrote in his book The Doors of Perception:

"Reflecting on my experience, I find myself agreeing with the eminent Cambridge philosopher, Dr. C. D. Broad, 'that we should do well to consider much more seriously than we have hitherto been inclined to do the type of theory which Bergson put forward in connection with memory and sense perception. The suggestion is that the function of the brain and nervous system and sense organs is in the main eliminative and not productive. Each person is at each moment capable of remembering all that has ever happened to him and of perceiving everything that is happening everywhere in the universe. The function of the brain and nervous system is to protect us from being overwhelmed and confused by this mass of largely useless and irrelevant knowledge, by shutting out most of what we should otherwise perceive or remember at any moment, and leaving only that very small and special selection which is likely to be practically useful' According to such a theory, each one of us is potentially Mind at Large. But in so far as we are animals, our business is at all costs to survive. To make biological survival possible, Mind at Large has to be funneled through the reducing valve of the brain and nervous system. What comes out at the other end is a measly trickle of the kind of consciousness which will help us to stay alive on the surface of this particular planet."

Hence, a prime function of the brain in a healthy individual, is not just to do the thinking, but to filter out thoughts and ideas that would impair the functional ability of the individual. In this manner, we are not bothered by extraneous thoughts and ideas that would disturb our daily functioning.

In the autistic child, the brain does not perform it's function of filtering out superfluous thoughts and ideas. Not only does it not filter out the thought from with in the person but it allows in, thoughts from with out the person; thoughts that are constantly being borne and transverse the universe. Our minds certainly do not pick up these ideas, because our minds are healthy and shield us from such extraneous information.

The autistic child's mind however does not work in this manner. His mind is open to all that abounds in the universe. He may be aware of many things that we do not know of, yet since he can not communicate, he can not inform us of these events and ideas. Only because of the trained facilitator can he communicate with us.

Since our soul is a part of G-d, we have a direct link to G-d. Only a truly righteous man can really activate that connection. For the average man, the soul only provides him with his life force. In the autistic child, the mind can accept what the soul knows since the body can not act upon this information.

It must be noted here that there is a fine line between an autistic child receiving information from the G-dly side of it's soul, and from it receiving information from the side of evil and darkness which have been given powers to wreak havoc in our lives. In order to keep balance in the world, G-d gives two sources of spiritual information, one is from the side of holiness, and the other is from the side of impurity. The purpose of this is to permit free choice at all levels, even on the level of prophecy. Therefore it is imperative that the facilitator be aware of this.

New hope is now available for those parents who have children in such situations.

facilitated communications kirjoitti:

Understand Facilitated Communcations and Understand the Soul

By Yechiel Sitzman and the J Mag staff
Facilitated communication is a method of communication with those autistic and other brain restricted individuals that is gaining popularity. Autistic children, who are frequently diagnosed as retarded due to their inability to communicate and function in the conventional manner. There, however, is a difference between autistic children and retarded children. Mentally retarded children will often show much desire to communicate with those around them, however, they do not possess sharp intellectual skills. Autistic children, on the other hand, show little overt desire to communicate with those around them, yet they may be highly intelligent individuals. Caution must be taken in applying these general rules as specific and exacting definitions.

Until recently, the autistic child was grouped as mentally retarded. Approximately 20 years ago research began to realize that there was a difference between the two types of children. A pioneer in this field was Rosemary Crossely who began using a method of communication which involved using a flat alphabet chart. By holding her hand on the autistic child's hand and enabling the child to point to letters on the chart, the child was able to communicate to her. This method became known as facilitated communication.

What became interesting to note was that beside the fact that children who until now were not able to communicate even to their parents, became able to express their thoughts and desires. Although they had previously been considered mentally incompetent, due to this new method of communication, they now were able to answer clearly questions placed to them. Many children exhibited high intelligence and knowledge in many facets of worldly knowledge that were unexplainable. How could children who, due to their condition, had received little education, yet know so much about the world around them?

Many autistic children have even been able to predict future events, events that they could not possibly have known about. Many researchers have been amazed at the ability of autistic children to to know things that these children simply had no logical way of knowing.

In order to solve this problem, it is necessary to understand how the brain functions and it's relationship to the soul.

In the normal, person the ideas which come from with out the person are assimilated into the mind of the person. The soul has very little influence on the person, other than providing it's vitality and animation. In an autistic child, there seems to be a split between the body and its desires and the brain and its desires. The body and the brain seem to be opposed in their desires. The body seems to prevent the brain from using the body for means of expressing itself. The mind can not seem to get the body to do its will. In a normal person, conflict between the mind and the body is normal; but it does not interrupt the person to carry out life. In the autistic child, the split between the mind and body have crippled the ability of the person to function.

Aldous Huxley , the famed philosopher and author wrote in his book The Doors of Perception:

"Reflecting on my experience, I find myself agreeing with the eminent Cambridge philosopher, Dr. C. D. Broad, 'that we should do well to consider much more seriously than we have hitherto been inclined to do the type of theory which Bergson put forward in connection with memory and sense perception. The suggestion is that the function of the brain and nervous system and sense organs is in the main eliminative and not productive. Each person is at each moment capable of remembering all that has ever happened to him and of perceiving everything that is happening everywhere in the universe. The function of the brain and nervous system is to protect us from being overwhelmed and confused by this mass of largely useless and irrelevant knowledge, by shutting out most of what we should otherwise perceive or remember at any moment, and leaving only that very small and special selection which is likely to be practically useful' According to such a theory, each one of us is potentially Mind at Large. But in so far as we are animals, our business is at all costs to survive. To make biological survival possible, Mind at Large has to be funneled through the reducing valve of the brain and nervous system. What comes out at the other end is a measly trickle of the kind of consciousness which will help us to stay alive on the surface of this particular planet."

Hence, a prime function of the brain in a healthy individual, is not just to do the thinking, but to filter out thoughts and ideas that would impair the functional ability of the individual. In this manner, we are not bothered by extraneous thoughts and ideas that would disturb our daily functioning.

In the autistic child, the brain does not perform it's function of filtering out superfluous thoughts and ideas. Not only does it not filter out the thought from with in the person but it allows in, thoughts from with out the person; thoughts that are constantly being borne and transverse the universe. Our minds certainly do not pick up these ideas, because our minds are healthy and shield us from such extraneous information.

The autistic child's mind however does not work in this manner. His mind is open to all that abounds in the universe. He may be aware of many things that we do not know of, yet since he can not communicate, he can not inform us of these events and ideas. Only because of the trained facilitator can he communicate with us.

Since our soul is a part of G-d, we have a direct link to G-d. Only a truly righteous man can really activate that connection. For the average man, the soul only provides him with his life force. In the autistic child, the mind can accept what the soul knows since the body can not act upon this information.

It must be noted here that there is a fine line between an autistic child receiving information from the G-dly side of it's soul, and from it receiving information from the side of evil and darkness which have been given powers to wreak havoc in our lives. In order to keep balance in the world, G-d gives two sources of spiritual information, one is from the side of holiness, and the other is from the side of impurity. The purpose of this is to permit free choice at all levels, even on the level of prophecy. Therefore it is imperative that the facilitator be aware of this.

New hope is now available for those parents who have children in such situations.

Lue lisää

http://www.nic.fi/~margie/Maalis2002.htm#Ulos

ULOS HILJAISUUDESTA

Epilä/Raholan koulussa on menossa erään luokan aamutunti. Luokassa on 8 oppilasta, 3-7 luokkalaisia. Vikki, Sini, Ville, Terhi, Varpu, Jari, Linnea, Juha ja opettajana Seija Valkeeniemi ja avustajina Pauliina ja Salme. Luokkahuone on kaunis ja tunnelma luokassa lämpöinen ja kodikas. Esittelyjen jälkeen opettaja lukee jokaisen päiväkirjan edellisen päivän toimista. Välillä kaikki tekevät älyjumppaa, joka auttaa raksuttamaan. Sitten läksyjen tarkistus ja liikuntarastien merkinnät taululle. Luokassa on yksi oppilas, 11-vuotias Terhi, joka ei osaa puhua omalla äänellään, mutta kylläkin kommunikaattorin avulla. Kone muuttaa Terhin kirjoittamat kirjaimet sanoiksi ja puheeksi. Kirjoittaminen tapahtuu fasilitoimalla Terhin henkilökohtaisen avustajan Pauliinan avustuksella.

Facilitated communication on tuettu kommunikaatiomenetelmä, jonka avulla autisti pystyy ilmaisemaan ajatuksiaan. Oppilas tarvitsee kirjoittamiseen avustajan, koska hänellä on pakkoliike kädessään. Avustaja tukemalla oppilaan kättä antaa kädelle vastavoiman. Ja oppilas antaa oman tahtovoimansa osoittamalla mihin kirjaimeen haluaa etusormensa kohdistuvan edessä olevassa aakkostaulussa tai tietokoneen näppäimistöllä.

Olimme Helyn ja Tuulan kanssa vierailemassa Terhin luokassa ja saimme seurata hänen kirjoittamistaan. Saimme Helyn kanssa myös konkreettisen näytön siitä, mitä käden vastustaminen tarkoittaa. Mietin mielessäni sanan 'kissa'. Sitten avustaja otti tukevasti kädestäni kiinni ja vastusti käteni liikettä, niin että itse hain kirjaimet ja naputin etusormellani. Tiedän että hän ei ohjannut kirjoitustani. Kirjoittaja saa tukea kädelleen, mutta itse valitsee kirjaimet. Ei todellakaan voi sanoa, että avustaja kirjoittaa puolestani.

Kaksi vuotta sitten kirjoitin tällä palstallani Tuulasta otsikolla 'Löytöretkeilyä Tuulan maailmaan'. Tuula, jonka sijaisäiti Hely on, on 10-vuotias reipas autistityttö. Hän on valtavasti edistynyt näinä kahtena vuotena, jotka olen hänet tuntenut. Haastattelin nyt Terhiä ja kysyin myös Tuulasta.

Miltä tuntui silloin, kun osasit lukea ja kukaan ei tiennyt sitä? - Se tuntui surulliselta. Saanko kirjoittaa tästä lehteen? - Minä tykkään kyllä siitä. Kirjoitatko myös kotona? - Äitin kanssa kirjoitan. Haluaisin näyttää sinulle minun runoja. Voinko laittaa runon lehteen? - Sopii se autistiruno. Millainen on autistinen? - Autisti on yksinäinen. Miksi? - Niin elän omissa ajatuksissani, hiljaisuudessa. Minusta tulee isona toimittaja, äiti kirjoittaa minusta kirjaa. Missä asut? - Tahmelassa, meillä on iso perhe. Joonas, Jouni, Roosa ja pikku Vili eli Simppa. Minä olen vanhin. Mitä ajattelet Tuulasta? - Hän on samanlainen kuin minä. Miten? - Tuula ei puhu. Tajuaako hän puheemme? - Uskon niin. Kirjoitan kaksi asiaa: Tuula on kaunis. Tuula ääntelee ihan kuin minä. Haluaisitko Tuulan ystäväksesi? - Minä olisin iloinen ystävästä. Luuletko että Tuulakin voisi oppia tätä kirjoittamista? - Voisin opettaa Tuulaa. Mitä luulet, miltä Tuulasta nyt tuntuu kun hän on seurannut sinun kirjoittamistasi? - Oudolta. Mikä sinulle on vaikeaa? - Kun olen yksin kotona, minulle tulee kiusaus syödä kaikkea mahdollista, ruokaa, kyniä, tavaroita jne. Ohjaako Pauliina sinun kättäsi? -Ei. Mitä Pauliina tekee? - Vastustaa kättäni.

Erityisopettaja Seija Valkeeniemi kertoi, että Terhi on nyt kirjoittanut 1 1/2 vuotta. Kun Terhi pari vuotta sitten tuli kouluun, hänet testattiin 2,5 vuotiaan tasolle. Opettaja testasi ja Terhi itki. Sitten opettaja huomasi kuinka kirjaimet kiinnostivat Terhiä heti. Tietokoneella annettiin tukitunteja. Irmeli Salminen Kouvolasta, jolla on useamman vuoden kokemus fasilitointityöstä, kävi kouluttamassa yhden päivän koululla, ja siitä kaikki alkoi. Myöhemmin Terhi on kertonut, että hän oppi lukemaan jo 8-vuotiaana kun muita opetettiin luokassa. Seija Valkeeniemi kertoo, että hän itse on oppinut valtavasti opettajana. Aina on pidettävä mielessä, että oppilaat ovat kyvykkäitä oppimaan uusia asioita, on vain oltava itse ennakkoluuloton. Tapasimme koulun käytävällä myös 16-vuotiaan Kimmon. Hän on viime marraskuusta asti kirjoittanut fasilitoimalla siten, että hän osoittaa kirjaimia aakkostaulussa, mutta kommunikaattoria hänellä ei vielä ole. Kun Kimmo piirteli, luokka-avustaja Marja-Leena huomasi kuinka käsi teki ympyrää, mutta kun kättä tuettiin, syntyi selviä erilaisia kuvioita. Näin syntyi idea siitä, että Kimmolla on kykyjä ilmaista itseään.

Hely on tuntenut Kimmon vauvasta asti ja niinpä hän kutsui vierailulle kotiinsa Kimmon hänen äitinsä ja pikkuveljensä Tommin kanssa. Olin myös innokas tapaamaan Kimmon. Meillä oli rattoisa iltapäivä. Innostuimme kokeilemaan erilaisia tapoja laittaa kirjaimia esille. Varsinkin Tommi-veli innostui asiasta, leikkasi kirjaimia ja asetteli niitä lattialle. Sain myös luvan olla Kimmon avustajana ja huomasin, että opin sen vaivattomasti. Kimmo innostui ja meistä tuli hetkessä sydänystävät. Sanoin hänelle, että 'minä uskon sinun kykyihisi'. Näin todella teen.

Kun ajattelen näitä nuoria ja kaikkia autistisia ja vammaisia lapsia, lämmin rakkaus säteilee sydämessäni. Kun katson heitä syvälle silmiin, näen kauniita, viisaita sieluja, jotka ovat täällä opettamassa meitä, niin sanottuja terveitä.

Lopuksi kaikille meille pääsiäistervehdyksenä Terhin runo.

Sydän runo

Sydän on hyvä asia. Se on rakkautta.
En osaa kirjoittaa miltä se tuntuu.
Jokaisen ihmisen sydän on punainen ja lämmin.
Lämmin kuin takka.
Autistin sydän on erilainen.
Se on hiljainen.
Loppu.

Valoisin pääsiäisajatuksin,

Margie

hiljaisuudesta kirjoitti:

http://www.nic.fi/~margie/Maalis2002.htm#Ulos

ULOS HILJAISUUDESTA

Epilä/Raholan koulussa on menossa erään luokan aamutunti. Luokassa on 8 oppilasta, 3-7 luokkalaisia. Vikki, Sini, Ville, Terhi, Varpu, Jari, Linnea, Juha ja opettajana Seija Valkeeniemi ja avustajina Pauliina ja Salme. Luokkahuone on kaunis ja tunnelma luokassa lämpöinen ja kodikas. Esittelyjen jälkeen opettaja lukee jokaisen päiväkirjan edellisen päivän toimista. Välillä kaikki tekevät älyjumppaa, joka auttaa raksuttamaan. Sitten läksyjen tarkistus ja liikuntarastien merkinnät taululle. Luokassa on yksi oppilas, 11-vuotias Terhi, joka ei osaa puhua omalla äänellään, mutta kylläkin kommunikaattorin avulla. Kone muuttaa Terhin kirjoittamat kirjaimet sanoiksi ja puheeksi. Kirjoittaminen tapahtuu fasilitoimalla Terhin henkilökohtaisen avustajan Pauliinan avustuksella.

Facilitated communication on tuettu kommunikaatiomenetelmä, jonka avulla autisti pystyy ilmaisemaan ajatuksiaan. Oppilas tarvitsee kirjoittamiseen avustajan, koska hänellä on pakkoliike kädessään. Avustaja tukemalla oppilaan kättä antaa kädelle vastavoiman. Ja oppilas antaa oman tahtovoimansa osoittamalla mihin kirjaimeen haluaa etusormensa kohdistuvan edessä olevassa aakkostaulussa tai tietokoneen näppäimistöllä.

Olimme Helyn ja Tuulan kanssa vierailemassa Terhin luokassa ja saimme seurata hänen kirjoittamistaan. Saimme Helyn kanssa myös konkreettisen näytön siitä, mitä käden vastustaminen tarkoittaa. Mietin mielessäni sanan 'kissa'. Sitten avustaja otti tukevasti kädestäni kiinni ja vastusti käteni liikettä, niin että itse hain kirjaimet ja naputin etusormellani. Tiedän että hän ei ohjannut kirjoitustani. Kirjoittaja saa tukea kädelleen, mutta itse valitsee kirjaimet. Ei todellakaan voi sanoa, että avustaja kirjoittaa puolestani.

Kaksi vuotta sitten kirjoitin tällä palstallani Tuulasta otsikolla 'Löytöretkeilyä Tuulan maailmaan'. Tuula, jonka sijaisäiti Hely on, on 10-vuotias reipas autistityttö. Hän on valtavasti edistynyt näinä kahtena vuotena, jotka olen hänet tuntenut. Haastattelin nyt Terhiä ja kysyin myös Tuulasta.

Miltä tuntui silloin, kun osasit lukea ja kukaan ei tiennyt sitä? - Se tuntui surulliselta. Saanko kirjoittaa tästä lehteen? - Minä tykkään kyllä siitä. Kirjoitatko myös kotona? - Äitin kanssa kirjoitan. Haluaisin näyttää sinulle minun runoja. Voinko laittaa runon lehteen? - Sopii se autistiruno. Millainen on autistinen? - Autisti on yksinäinen. Miksi? - Niin elän omissa ajatuksissani, hiljaisuudessa. Minusta tulee isona toimittaja, äiti kirjoittaa minusta kirjaa. Missä asut? - Tahmelassa, meillä on iso perhe. Joonas, Jouni, Roosa ja pikku Vili eli Simppa. Minä olen vanhin. Mitä ajattelet Tuulasta? - Hän on samanlainen kuin minä. Miten? - Tuula ei puhu. Tajuaako hän puheemme? - Uskon niin. Kirjoitan kaksi asiaa: Tuula on kaunis. Tuula ääntelee ihan kuin minä. Haluaisitko Tuulan ystäväksesi? - Minä olisin iloinen ystävästä. Luuletko että Tuulakin voisi oppia tätä kirjoittamista? - Voisin opettaa Tuulaa. Mitä luulet, miltä Tuulasta nyt tuntuu kun hän on seurannut sinun kirjoittamistasi? - Oudolta. Mikä sinulle on vaikeaa? - Kun olen yksin kotona, minulle tulee kiusaus syödä kaikkea mahdollista, ruokaa, kyniä, tavaroita jne. Ohjaako Pauliina sinun kättäsi? -Ei. Mitä Pauliina tekee? - Vastustaa kättäni.

Erityisopettaja Seija Valkeeniemi kertoi, että Terhi on nyt kirjoittanut 1 1/2 vuotta. Kun Terhi pari vuotta sitten tuli kouluun, hänet testattiin 2,5 vuotiaan tasolle. Opettaja testasi ja Terhi itki. Sitten opettaja huomasi kuinka kirjaimet kiinnostivat Terhiä heti. Tietokoneella annettiin tukitunteja. Irmeli Salminen Kouvolasta, jolla on useamman vuoden kokemus fasilitointityöstä, kävi kouluttamassa yhden päivän koululla, ja siitä kaikki alkoi. Myöhemmin Terhi on kertonut, että hän oppi lukemaan jo 8-vuotiaana kun muita opetettiin luokassa. Seija Valkeeniemi kertoo, että hän itse on oppinut valtavasti opettajana. Aina on pidettävä mielessä, että oppilaat ovat kyvykkäitä oppimaan uusia asioita, on vain oltava itse ennakkoluuloton. Tapasimme koulun käytävällä myös 16-vuotiaan Kimmon. Hän on viime marraskuusta asti kirjoittanut fasilitoimalla siten, että hän osoittaa kirjaimia aakkostaulussa, mutta kommunikaattoria hänellä ei vielä ole. Kun Kimmo piirteli, luokka-avustaja Marja-Leena huomasi kuinka käsi teki ympyrää, mutta kun kättä tuettiin, syntyi selviä erilaisia kuvioita. Näin syntyi idea siitä, että Kimmolla on kykyjä ilmaista itseään.

Hely on tuntenut Kimmon vauvasta asti ja niinpä hän kutsui vierailulle kotiinsa Kimmon hänen äitinsä ja pikkuveljensä Tommin kanssa. Olin myös innokas tapaamaan Kimmon. Meillä oli rattoisa iltapäivä. Innostuimme kokeilemaan erilaisia tapoja laittaa kirjaimia esille. Varsinkin Tommi-veli innostui asiasta, leikkasi kirjaimia ja asetteli niitä lattialle. Sain myös luvan olla Kimmon avustajana ja huomasin, että opin sen vaivattomasti. Kimmo innostui ja meistä tuli hetkessä sydänystävät. Sanoin hänelle, että 'minä uskon sinun kykyihisi'. Näin todella teen.

Kun ajattelen näitä nuoria ja kaikkia autistisia ja vammaisia lapsia, lämmin rakkaus säteilee sydämessäni. Kun katson heitä syvälle silmiin, näen kauniita, viisaita sieluja, jotka ovat täällä opettamassa meitä, niin sanottuja terveitä.

Lopuksi kaikille meille pääsiäistervehdyksenä Terhin runo.

Sydän runo

Sydän on hyvä asia. Se on rakkautta.
En osaa kirjoittaa miltä se tuntuu.
Jokaisen ihmisen sydän on punainen ja lämmin.
Lämmin kuin takka.
Autistin sydän on erilainen.
Se on hiljainen.
Loppu.

Valoisin pääsiäisajatuksin,

Margie

Lue lisää

My right hand is my life'
11-year old girl writes about the world of autism
January 28, 2007

By CARLA OCCASO Staff Writer

Keri Darling, left, talks to her daughter, Maleia, 11. Recently, Maleia, who has autism, began communicating with her family for the first time by typing her thoughts and feelings on a computer keyboard.
Photo: Photo by Carla Occaso

Maleia Darling shocked her family just over a year ago by communicating volumes of bright, articulate thoughts although she has never spoken a sentence. Until then they didn't know what her favorite color was, let alone what her complex thoughts and feelings about her experiences might be.

"My name is Maleia and I am eleven years old," she wrote with a typewriter-like device on Oct. 2 in a piece titled "My Life With Autism." "I feel like other kids my age but my world is very different. I am forced to live in the world of autism. To me there is a gospel different from yours. Autism affects me both academically and personally."

Before Maleia (her name is pronounced MAH-LEE-AH) learned to type on a keyboard about a year and a half ago, her parents, Todd and Keri Darling of Barre, said they had no idea what went on in their daughter's head. They picked out what they thought she would like or need by trying to guess the desires of their sometimes expressionless child with big beautiful eyes and short blonde hair. short blonde hair. Once she began writing, her inner world came alive to them.

"We were blown away," said Todd Darling, who is a wholesale flower distributor. "We didn't know she knew what she knew (and) for me, it gave me a stronger will to help her get out of the world she was in."

Now, Maleia tells her parents what she thinks, feels, likes and dislikes. Her favorite colors are pink and yellow. She likes volcanoes. She likes riding on snowmobiles, roller coasters and other amusement park thrill rides.

"It's made us closer because we know how she feels," Keri Darling said. "Before, I made all the decisions. It's helped to get to know her more."



#





Autism is classified by the World Health Organization as a neurodevelopmental disorder. The condition affects a person's ability to communicate, understand spoken language and interact socially. Symptoms usually appear in the first three years and continue throughout life.

Maleia's medical problems started at nine months when she had a grand mal seizure. Keri Darling called emergency rescue and felt "helpless" and "clueless" as her tiny daughter was rushed to Dartmouth-Hitchcock Medical Center in Lebanon, N.H.

Doctors diagnosed Maleia with autism at age 3. Her parents cared for her as she endured seizures for days in a row, every hour on the hour, according to Keri Darling. The early years were "rough," Todd recalls. As Maleia matured, the duration and frequency of the seizures decreased, and though she had seizures as recently as last summer, the episodes have been regulated with medication.

The Darlings credit their own parents, extended family, the Barre Town School and the community for supporting them along the way.

Keri Darling, who works as a victim's advocate for the deaf, said the Barre Town school has been "awesome." The school board promised the Darlings the school would help Maleia with whatever she needed when she enrolled in kindergarten. Now in fifth grade, she works with a one-on-one aide, often in a room by herself, because it is difficult for her to be with groups of people.

Todd Darling said it was impossible to tell how much Maleia was taking in until Harvey Lavoy of the Barre Town School introduced her to "facilitated communication" last year.

In her case, someone holds her wrist or elbow in place so that she can access the keyboard of a computer or other writing device with her fingers. Maleia hits the keys on her own, Todd Darling says. Her writing is not edited by her parents or her teachers.

Maleia is reading and writing at a fifth grade level, and she has produced pages of sensitive, intelligent essays.

"Words, thoughts, hoards (sic) of emotions spin a riot in my head," Maleia wrote. "How can I speak or know drops of thoughts when there's an ocean in my head? … How can I fit into a world forcing feelings I don't have?"

Her writing reveals a thoughtful person full of hopes and joys, even though on the outside she appears to be cut off from others.

The Darlings had no idea how their dedication touched their daughter until recently because Maleia only utters occasional single words to indicate what she wants, her father says. And while she can say many words, she's not able to string them together verbally in sentences, he says.

Maleia recently wrote, "My mom is pretty and smart. She loves me the way I am. She loves me as much as she loves (brother) Jake. I'm surprised that she loves me when I'm a devil. I love her, too, and I'm so really happy that she's my mom."

Maleia also wrote a letter called "My Special Place" to her grandmother: "Roots of love, rays of happiness, torch of hope, these are the things that touch me when I am at Mimi's house. Mimi's house is truly peaceful … She's always a fountain of love for me and filled with real hope that I am smart and really lovely." Kay Lamberti, Maleia's grandmother, said she cried when she read this letter.

Her parents are amazed how simple communication devices, such as portable electronic keyboards, have opened Maleia's world.

Knowing her preferences has allowed the Darlings to provide an enriching environment at home. Her bedroom has become a soothing retreat decorated in her favorite colors with soft lights. On a recent Sunday afternoon Bob Marley's rhythmically lilting reggae music filled the air as Maleia swung on a swing in her bedroom. Todd Darling explained Maleia puts on music and swings every day when she gets home from school to unwind from the daily stress. Autistic children need certain kinds of physical stimuli other children don't, according to Keri Darling. In the summer, she swims in their backyard pool.

Maleia's seemingly miraculous discovery of the written word has inspired her uncle, Randy Lamberti, to join with Sue LaGue of Berlin, a grandmother of an autistic child, to raise money help families like the Darlings purchase equipment for their loved ones.

"We wanted to do something to raise awareness," Lamberti said. "It is a disease that gets one in every 166 children."

Lamberti and LaGue formed the Autism Puzzle Foundation to serve people statewide in need of toys or devices to enrich their lives. They held a fund-raiser at the Barre Elks Club last April, which raised nearly $21,000. Of that, $10,000 was given to Cure Autism Now (www.cureautismnow.org), a research organization that is offering to pay for devices that can people with autism.

Families throughout Vermont are invited to contact the Vermont Assistive Technology program about the Autism Puzzle Foundation gifts of up to $500 for therapy swings, facilitated communication equipment and other alternative communication devices. Funds are also available for toys that help with sensory integration, fine motor skills, gross motor skills, tactile skills and cognition skills.

"We're trying to help Vermonters statewide," Lamberti said. "There's a huge need."

And now, thanks to help from family, teachers and others, Maleia can speak for herself about how important these devices are to those with autism.

"I want to tell people how much my life has changed with typing," Maleia wrote. "Typing is my voice and my right hand is my life. Before typing I had little way to tell people my needs and feelings."