Blaming the Patriarchy for Autistic Children

EXECUTIVE SUMMARY: There's a brief passage in Betty Friedan's landmark study of American housewives in the 1950s and '60s, The Feminine Mystique, where she discusses autism. She embraces the understanding of autism popular at the time, which posits that autism is an emotional disturbance arising from the relationship between mother and child. Yet she parts company from other popularizers of this theory by arguing that the confining, constricted nature of the housewife role distorts women's personalities and their relationships with their husbands and children, thereby making psychological problems more, not less, likely in the families where the mothers are full-time housewives.

She was, of course, massively wrong about autism, though I think her overall thesis about women's needs, and the failure of traditional gender roles to meet them, was (and is!) sound. The few paragraphs she devotes to autism aren't crucial to the points she makes in the rest of the book, and the psychogenic theory of autism is pretty much dead today, and hardly in need of aggressive debunking, but she talks about increasing prevalence of autism with an urgency similar to the "autism epidemic" fears of today.
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The Classic Text of the Modern Women's Movement which Exploded the Myth of THE FEMININE MYSTIQUE!

It's the fiftieth anniversary of the publication of Betty Friedan's The Feminine Mystique, and instead of talking about the book as a whole, or evaluating it in a modern context (as so many other people, far better informed than I, have already done), I am going to spotlight one small part in the book, where she talks about autism.

(If you've read the book, even recently, you might not even remember her talking about autism at all! The idea might even strike you as anachronistic, given that freaking out over an Autism Epidemic is so pervasive in our time. But it's in there --- it hit me with particular force because I am autistic, and the passage is the kind of thing it's not at all nice to read if you're reading it about yourself.)

If you haven't read this book, do, especially if you're interested in feminism or women's history. As profoundly limited in scope as it is (a quality it shares with the earlier, similar work by Mary Wollstonecraft, A Vindication of the Rights of Woman, which also concerns itself with society's neglect of women's minds and non-reproductive capacities) --- the only women who show up in its pages are well-educated, middle-and-upper-class white women, who don't have to do hard, physical work (or much of any work) to survive, for whom work outside the home could be intellectually demanding and emotionally rewarding, instead of boring, exhausting, dangerous, soul-killing drudgery, and whose labor is only exploited within the home and never also outside it --- it's still valuable for its detailed enumeration of the psychological costs of limiting women's lives to marriage, home and family.

Off and on throughout the book, and in a more sustained fashion in Chapters Eleven and Twelve, Friedan talks about how, perversely, the 1950s and '60s funneling of women back into the full-time housewife role actually hurt family life and sexual relations. In Chapter Twelve, "Progressive Dehumanization," she describes a pattern she sees of women whose too-early entry into marriage and motherhood precluded their developing authentic selves of their own, and thus rendered them incapable of raising children with all the skills and character traits they needed to become independent, themselves.

(I am going to quote at some length from the chapter, so for readability's sake I'm going to do what I did in this post and not blockquote the entire thing, but instead draw lines above and below the quoted text to separate it from my own. Quotations within the quoted passage I will still blockquote).

Here she brings in autism as the logical endpoint of this Great Chain of Nonbeing, this "progressive dehumanization" as one psychologically stunted generation brings up another, even more psychologically stunted, to the point of being autistic.
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At its most extreme, this pattern of progressive dehumanization can be seen in the cases of schizophrenic children: "autistic" or "atypical" children, as they are sometimes called. I visisted a famous clinic which has been studying these children for almost twenty years. During this period, cases of these children, arrested at a very primitive, sub-infantile level, have seemed to some to be on the increase. The authorities differ as to the cause of this strange condition, and whether it is actually on the increase or only seems to be because it is now more often diagnosed. Until quite recently, most of these children were thought to be mentally retarded. But the condition is being seen more frequently now, in hospitals and clinics, by doctors and psychiatrists. And it is not the same as the irreversible, organic types of mental retardation. It can be treated, and sometimes cured.

These children often identify themselves with things, inanimate objects --- cars, radios, etc., or with animals --- pigs, dogs, cats. The crux of the problem seems to be that these children have not organized or developed strong enough selves to cope even with the child's reality; they live on the level of things or of instinctual biological impulse that has not been organized into human framework at all. As for the causes, the authorities felt they "must examine the personality of the mother, who is the medium through which the primitive infant transforms himself into a socialized human being."

At the clinic I visited (The James Jackson Putnam Children's Center in Boston) the workers were cautious about drawing conclusions about these profoundly disturbed children. But one of the doctors said, a bit impatiently, about the increasing stream of "missing egos, fragile egos, poorly developed selves" that he encountered --- "It's just the thing we've always known, that if the parent has a fragile ego, the child will."
Most of the mothers of the children who never developed a core of human self were "extremely immature individuals" themselves, though on the surface they "give the impression of being well-adjusted." They were very dependent on their own mothers, fled this dependency into early marriage, and "have struggled heroically to build and maintain the image they have created of a fine woman, wife and mother."

The need to be a mother, the hope and expectation that through this experience she may become a real person, capable of true emotions, is so desperate that of itself it may create anxiety, ambivalence, fear of failure. Because she is so barren of spontaneous manifestations of maternal feelings, she studies vigilantly all the new methods of upbringing and reads treatises about physical and mental hygiene. [This passage, along with the one a few paragraphs down, comes from Beata Rank (1949), "Adaptation of the Psychoanalytical Technique for the Treatment of Young Children with Atypical Development," American Journal of Orthopsychiatry*, Vol. 19, Issue 1, pp. 130-139]

Her omnipresent care of her child is based not on spontaneity but on following "the picture of what a good mother should be," in the hope that "through identification with the child, her own flesh and blood, she may experience vicariously the joys of real living, of genuine feeling."
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(Is anyone else starting to think of the evil Other Mother from "Coraline" yet?)
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And thus, the child is reduced from "passive inertia" to "screaming in the night" to non-humanness. "The passive child is less of a threat because he does not make exaggerated demands on the mother, who feels constantly in danger of revealing that emotionally she has little or nothing to offer, that she is a fraud." When she discovers that she cannot really find her own fulfillment through the child:

... she fights desperately for control, no longer of herself perhaps, but of the child. The struggles over toilet training and weaning are generally battles in which she tries to redeem herself. The child becomes the real victim --- victim of the mother's helplessness which, in turn, creates an aggression in her that mounts to destruction. The only way for the child to survive is to retreat, to withdraw, not only from the dangerous mother, but from the whole world as well.

And so he becomes a "thing," or an animal, or "a restless wanderer in search of no one and no place, weaving about the room, circling the walls as if they were bars he would break through."

In this clinic, the doctors were often able to trace a similar pattern back several generations. The dehumanization was indeed progressive.
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The first thing about this passage that jumps out at me is the objectification of the autistic children Friedan and her expert interlocutors are observing. 

It's just so explicit: autistic people are not human, we're not even conscious. We represent the endpoint of a multigenerational loss of humanity. It's kind of ironic and weird that a book whose aim is to prove that women's minds are more complex, capable of more and needing more, than the psych experts of the time thought possible, would make the same kind of categorical dismissal of the possibility of any inner life in another group of people.

Maybe it's not that weird. And the point she's trying to make --- that people who are shunted into parenthood without any opportunity to live their own lives, or find out what they really want (including whether they want to be parents!) tend to make poor parents --- is a valid one; it's just that autistic people are neither "dehumanized" nor the result of poor parenting. We're as fully human as anyone else.

Moving on: You can see Bruno Bettelheim's** "refrigerator mother" theory of autism supplying most of the basic theory here; it's just that Friedan is more sympathetic to the mothers than he is. Both writers (and Friedan was trained as a psychologist, too) think autism is a state of psychological emptiness (no self, no thoughts, no capacity to relate to others) caused by something going wrong in the mother/child relationship --- something the mother does wrong. Bettelheim thought children became autistic because their mothers rejected them --- at some level (whether they were aware of it or not) they "wish(ed) that (their) child(ren) should not exist." For Friedan, the problem starts earlier: the mothers' own emotional development is curtailed, because they never had a chance to do anything other than marry young and have children, so the mothers lean too hard on their young children for emotional support, which then stunts the children's emotional growth to an even greater extent. Mother and child are both victims, and the social order is to blame.

I see no difference at all between Friedan and Bettelheim in their degree of empathy for actual autistic children (and perish the thought that they might consider autistic adults): there is none. The whole point of both of their theories is that we are not people, we have no inner lives worth considering; they only differ on how we came to be that way. We represent the end stage of some pathology, whether it is social (patriarchy, in Friedan) or personal (refrigerator motherhood, in Bettelheim).

*Am I the only person who finds the term "orthopsychiatry" to be very creepy? It has a connotation of straightening, of bringing into line, that I don't think belongs in the mental-health profession. I know (partially from reading The Feminine Mystique itself, although The Organization Man and The Lonely Crowd also helped give me this impression) that that was indeed the aim of psychiatry in those days --- to bring people into line, to help them "adjust" --- but it still creeps me out a lot.

**Bettelheim isn't cited in any of the sections describing autism, probably because The Feminine Mystique predated his most famous work about autism, The Empty Fortress, by four years. But he had been running his Orthogenic School for "disturbed" children since the mid-1940s, and had written at least two things (an essay for Scientific American magazine, and an article about feral children, whom he believed were really autistic) about autism prior to The Feminine Mystique's publication in 1963. Bettelheim is quoted at length elsewhere in the chapter --- Friedan devotes a lot of space to his observations of his fellow prisoners in the Dachau and Buchenwald concentration camps. Also, William Long, who has written a series of articles on how various writers have understood autism throughout its history, believes that Bettelheim must have been popularizing his theories of autism long before he published The Empty Fortress, because Bernard Rimland criticizes Bettelheim and his "psychogenic" view of autism in his own book, Early Infantile Autism, published in 1964.

New Medicaid Regulations Are Open to Public Comment

A little over a month ago, the Centers for Medicare and Medicaid Services proposed some new rules for home- and community-based services for people with disabilities, trying to ensure that states do everything they can to make sure that disabled people covered by Medicaid can actually get the services they need in their own homes, or in supported residential settings where they have the same amount of freedom and control over their own lives that they would if they were living on their own.


That's the spirit of the law, anyway. Lots of advocacy groups made up of people whom this law is supposed to benefit have written recommendations for wording that makes sure the letter of the law honors the spirit --- that health-care providers receiving Medicaid funding to give people supportive housing don't just take the money and throw the intended beneficiaries into a group home that reproduces all the restrictions, power dynamics, and other bad things about institutions in a somewhat different setting.


The rule change is open to public comment until Monday; I'd like to add my voice to a chorus of voices emphasizing just how important autonomy and freedom from restriction are. If you have anything to say about it, especially if you've got any concrete ideas or relevant personal experiences, go here, click the big blue "Comment Now!" button, and let loose.


The Autistic Self-Advocacy Network and the Administration on Intellectual and Developmental Disabilities have both written about this proposed rule change; AIDD's page  is an easy-to-read summary of what the rules entail, while ASAN's page is more of a critique.


Here is the proposed definition of "home and community-based setting":

(i) The setting is integrated in, and facilitates the individual's full access to, the greater community, including opportunities to seek employment and work in competitive integrated settings, engage in community life, control personal resources, and receive services in the community, in the same manner as individuals without disabilities. 

(ii) The setting is selected by the individual from among all available alternatives and is identified in the person-centered service plan. 

(iii) An individual's essential personal rights of privacy, dignity and respect, and freedom from coercion and restraint are protected. 

(iv) Individual initiative, autonomy, and independence in making life choices, including but not limited to, daily activities, physical environment, and with whom to interact are optimized and not regimented. 

(v) Individual choice regarding services and supports, and who provides them, is facilitated. 

(vi) In a provider-owned or controlled residential setting, the following additional conditions must be met. Any modification of the conditions, for example, to address the safety needs of an individual with dementia, must be supported by a specific assessed need and documented in the person-centered service plan: 

  (A) The unit or room is a specific physical place that can be owned, rented or occupied under another legally enforceable agreement by the individual receiving services, and the individual has, at a minimum, the same responsibilities and protections from eviction that tenants have under the landlord tenant law of the State, county, city or other designated entity; 

(B) Each individual has privacy in their sleeping or living unit:         (1) Units have lockable entrance doors, with appropriate staff having keys to doors;         (2) Individuals share units only at the individual's choice; and         (3) Individuals have the freedom to furnish and decorate their sleeping or living units. 

(C) Individuals have the freedom and support to control their own schedules and activities, and have access to food at any time; 

(D) Individuals are able to have visitors of their choosing at any time; and  

(E) The setting is physically accessible to the individual.

They also spell out what a "home and community-based setting is not:

Home and community-based settings do not include the following: 

(i) A nursing facility; 

(ii) An institution for mental diseases; 

(iii) An intermediate care facility for [people with intellectual disabilities] 

(iv) A hospital providing long-term care services; or 

(v) Any other locations that have qualities of an institutional setting, as determined by the Secretary. The Secretary will apply a rebuttable presumption that a setting is not a home and community-based setting, and engage in heightened scrutiny, for any setting that is located in a building that is also a publicly or privately operated facility that provides inpatient or institutional treatment, or in a building on the grounds of, or immediately adjacent to, a public institution, or disability-specific housing complex.

And here is the definition of "person-centered service plan": 

The person-centered service plan must reflect the services and supports that are important for the individual to meet the needs identified through an assessment of functional need, as well as what is important to the individual with regard to preferences for the delivery of such services and supports. Commensurate with the level of need of the individual, and the scope of services and supports available under the State plan HCBS benefit, the plan must: 

(1) Reflect that the setting in which the individual resides is chosen by the individual. 

(2) Reflect the individual's strengths and preferences. 

(3) Reflect clinical and support needs as identified through an assessment of functional need. 

(4) Include individually identified goals and desired outcomes. 

(5) Reflect the services and supports (paid and unpaid) that will assist the individual to achieve identified goals, and the providers of those services and supports, including natural supports. Natural supports cannot supplant needed paid services unless the natural supports are unpaid supports that are provided voluntarily to the individual in lieu of State plan HCBS. 

(6) Reflect risk factors and measures in place to minimize them, including Individualized backup plans. 

(7) Be understandable to the individual receiving services and supports, and the individuals important in supporting him or her. 

(8) Identify the individual and/or entity responsible for monitoring the plan. 

(9) Be finalized and agreed to in writing by the individual and signed by all individuals and providers responsible for its implementation. 

(10) Be distributed to the individual and other people involved in the plan. 

(11) Include those services, the purchase or control of which the individual elects to self-direct, meeting the requirements of [earlier section] of this subpart. 

(12) Prevent the provision of unnecessary or inappropriate care. 

(13) Other requirements as determined by the Secretary. 

... and rules for how the service plan should be drawn up:

Based on the independent assessment required in [earlier section] of this subpart, the State must develop (or approve, if the plan is developed by others) a written service plan jointly with the individual (including, for purposes of this paragraph, the individual and the individual's authorized representative if applicable). The person-centered planning process is driven by the individual. The process: 

(1) Includes people chosen by the individual. 

(2) Provides necessary information and support to ensure that the individual directs the process to the maximum extent possible, and is enabled to make informed choices and decisions. 

(3) Is timely and occurs at times and locations of convenience to the individual. 

(4) Reflects cultural considerations of the individual. 

(5) Includes strategies for solving conflict or disagreement within the process, including clear conflict-of-interest guidelines for all planning procedures. 

(6) Offers choices to the individual regarding the services and supports they receive and from whom. 

(7) Includes a method for the individual to request updates to the plan.

(8) Records the alternative home and community-based settings that were considered by the individual.

(That has got to be the greatest number of time I have had to type the word "individual" on any given day.)


I think this all sounds fairly complete, and airtight, but then I have zero experience actually living in this kind of environment.  


What do you, my readers, think? Do any of you have anything you would add, or change, to the above specifications? Without your input, I'm pretty much going to be echoing ASAN's recommendations in my comment on regulations.gov, but I'll hold off on commenting until, say, tomorrow night or Monday morning to see if I get any additional recommendations from comments here.  

Unspeakable

That's what we call the things that are so awful, so heartbreaking, they stop the words in our throats and the thoughts in our heads. Sometimes they even stop the tears in our eyes; the sadness we feel is so heavy it will not be cried out.

For me, the abuse, neglect and murder of people with disabilities* by the people who are supposed to be taking care of them calls up this heavy sadness.

From Leah Jane's blog:

A lot of my neurotypical friends don't understand why I am so paranoid about going to an institution. They think, for one, that it could never happen to me, because I'm intelligent and express myself eloquently, and secondly, they don't think it could be all that bad for someone like me, who is mostly able-bodied save for troubles with my back from scoliosis, since I could feed myself, ask for private time, and go to the bathroom alone. There is also often this assumption that goes unchallenged that the disabled have it made in the U.S., that we're lucky not to be living in a country where we'd be kept in cages or denied food and water. So I often end up shoving stories like this in their faces, reminding the world that being cognitively, not physically, disabled, or living in America is no guarantee of your human rights being respected.

From the news story she links to:

Jonathan Carey did not die for lack of money.

New York State and the federal government provided $1.4 million annually per person to care for Jonathan and the other residents at the Oswald D. Heck Developmental Center, a warren of low-rise concrete and brick buildings near Albany.

Yet on a February afternoon in 2007, Jonathan, a skinny, autistic 13-year-old, was asphyxiated, slowly crushed to death in the back seat of a van by a state employee who had worked nearly 200 hours without a day off over 15 days. The employee, a ninth-grade dropout with a criminal conviction for selling marijuana, had been on duty during at least one previous episode of alleged abuse involving Jonathan.

"I could be a good king or a bad king," he told the dying boy beneath him, according to court documents.

In the front seat of the van, the driver, another state worker at O.D. Heck, watched through the rear-view mirror but said little. He had been fired from four different private providers of services to the developmentally disabled before the state hired him to care for the same vulnerable population.

O.D. Heck is one of nine large institutions in New York that house the developmentally disabled, those with cerebral palsy, autism, Down syndrome and other conditions.

...

But the institutions are hardly a model: Those who run them have tolerated physical and psychological abuse, knowingly hired unqualified workers, ignored complaints by whistle-blowers and failed to credibly investigate cases of abuse and neglect, according to a review by the New York Times of thousands of state records and court documents, along with interviews of current and former employees.

...

Similar problems can be found across the state. The Broome Developmental Center in Binghamton has been cited for repeatedly failing to protect residents from staff members. One employee there was merely reassigned after encouraging adolescent residents to fight one another.

Patterns of abuse appear embedded in the culture of the Sunmount Developmental Center in the Adirondacks. Last year, one supervisor was accused of four different episodes of physical and psychological abuse of residents within a span of two and a half months; another employee bragged on Facebook about "beating retards."

The most damning accounts of the operations come from employees --- thwarted whistle-blowers from around the state --- and the beleaguered family members of residents.

...

For the Careys, the journey to O.D. Heck was a last resort. ... [They] raised Jonathan until he was 9, but became worried that they could not teach their son basic living skills, like toilet training. They enrolled him at the Anderson Center for Autism, a privately run school in the Hudson Valley overseen by the state.

At first, the school seemed a good fit, until Jonathan, who was always thin, began losing weight. During one visit, an employee told the Careys to take home a duffel bag they had never used. They discovered a logbook inside the bag detailing startling changes to Jonathan's treatment plan. Among other things, the school was withholding food from Jonathan to punish him for taking off his shirt at inappropriate times.

"They literally planned to withhold my son's meals," Mr. Carey said. "And when that was not working, then they began to seclude him in his bedroom for an extended period of time. He missed eight full days of school."

So, to save him from possible death by starvation, Jonathan's parents removed him from that school and tried to take care of him at home again, but his problems had gotten worse. He had tantrums, he would run away, and Mr. and Mrs. Carey didn't think they could keep him safe, so they were referred to O.D. Heck. There was maybe a year and a half between Jonathan's admission to that school and his death in the back of the van. During that period, he was hospitalized three times with unexplained injuries.

It should be obvious from what I've quoted of this (lengthy) article that this is systemic.

It should be equally obvious that this sort of abuse is not restricted to any one kind of institution: the New York Times investigation found that the same culture of abuse detailed above, at the nine large institutions, also pervaded New York's 2,000 smaller group homes. Nor is it just restricted to New York --- last fall, the Chicago Tribune investigated thirteen deaths at a single nursing home, Alden Village North, that occurred over the past ten years. Similarly, stories of people with disabilities being abused, neglected or killed in their homes by family members appear in the news with some regularity. (Most recently, in my area, a young woman was sentenced to eight years and six months in prison for confining her six-year-old son with Down syndrome to an attic and starving him. The boy survived, and is now in foster care with his two sisters).

I think there are a lot of factors that work together to make this such a ubiquitous thing in our culture; the two biggest ones I can come up with now are 1) horrible societal attitudes toward disabled people, and 2) horrible societal attitudes toward caregiving. It's easy to see how the first one would contribute to a culture of abuse: it's always easier to abuse someone if you don't see them as a person. But I also think the undervaluing of caregivers plays a role, too --- the institutions in those news stories wouldn't have hired people with criminal convictions (or previous dismissals from other institutions) if they'd really thought caregiving was an important task that can't be entrusted to just anyone. The chronic understaffing of institutions is another symptom of this undervaluing --- caregiving is hard work, with long, irregular hours, and the pay is low, so they're always short on people who are willing to do it. Then, because of the perennial labor shortage, the people who run institutions are unwilling to fire people even for serious offenses.

I'm also starting to think that "unspeakable" is precisely the wrong word for such atrocities. Unspeakable means something we never talk about, something repressed. It means we can sweep it under the rug and pretend it doesn't happen, or that when it happens it's an aberration. And people want very much to believe institutions are safe, that their children or parents will be happy there.

*I feel similarly about abuse of children or animals by their guardians, or of women by the men they love. But this post deals with issues specific to people with disabilities, so I'm going to restrict my discussion to that.

In Which I Finally Get Back to Writing About Autism in Fiction

Marti Leimbach's 2006 novel, Daniel Isn't Talking, covers a lot of the same narrative territory as the first volume of Keiko Tobe's manga series "With the Light" --- the protagonist is a young wife and mother who discovers that her son is autistic, and the story follows this pattern, more or less: 1) following her child's diagnosis, the main character goes into shock, grieves for the "normal" child she wishes she had instead, and watches her life and her marriage fall apart around her; 2) she comes out of her depression and begins to fight for her child, wrangling with various therapists, educators and bureaucrats over what sort of treatment to pursue; and 3) as she, and her allies in the school and health-care systems, and among her in-laws, begin to find schools, therapies, and accommodations that work well for her child, her life regains a semblance of order and she comes to understand her child better and love him for the person he is more than she grieves for the person he's not.

I'll review this book as a whole later, but what I want to focus on right now is Leimbach's use of military metaphors throughout this book: her protagonist, Melanie Marsh, refers to herself repeatedly as someone fighting a war against autism.

Here are some instances of this parenting-as-combat, autism-as-The-Enemy metaphor:

Stephen's uncle Raymond, that dear man, rings to tell me not to regret giving Daniel the MMR. His voice is loud in the receiver; he speaks as one who has endured early attempts at telephonic communication, who has shouted into tortoiseshell receivers fixed on wall phones, gone through operators in order to place calls. Now he tells me that in his time he has seen children die of measles; they died in droves when he was a boy. Temperatures of a hundred and six, their brains burned inside their skulls. I mustn't regret a thing.

"Please come and see us," I say to him. Raymond lives on the other side of London. He owns the same house in which he grew up and that he shared with his mother until her death some thirty years ago. He has taken me around the upstairs to show me the scars in the ceiling where a bomb came through the roof during the war. He has stood by me by the window and pointed to the areas, now dense with houses, where once there was nothing but craters and buildings in ruin. He has seen things he will not tell me about, the experiences of being a soldier. "I would not wish my memories upon you," he once said, then asked me if I could find a use for the cake pan his mother used to bake birthday cakes for him and his brother when they were children. Whether, too, I might like some of his mother's damask linen.

"I will come," he says now. "But meanwhile, you mustn't blame yourself."

"I don't," I tell him, a lie. I am fast becoming a good liar, which I discover is a means of camouflage for the protection of others, those who have not been conscripted into this battle with autism, those who have normal children, for example.

(Notice, too, the juxtaposition of Melanie's silence, as an embattled (in a metaphorical sense) Mom of an Autistic Kid with the silence of this other character, Raymond, who has fought in an actual war. He and Melanie have identical reasons for concealing their darkest thoughts from each other, and I think Leimbach's highlighting the similarities between Melanie and Raymond, and their reasoning behind fencing off a portion of their minds from other people, for those other people's protection, helps emphasize the mom-as-soldier metaphor in a way that merely explicitly stating it, as Melanie does when she says she has been "conscripted into this battle with autism," can't do.)

Another example:

"What about all these other therapies?" I ask Andy. There's art therapy, music therapy, sound therapy, therapies that involve brushing the child in order to help with "sensory" issues, not to mention many highly structured teaching practices that happen in schools.

Andy is setting out a new track [of a toy train set; he's playing a game with Daniel, who likes Thomas the Tank Engine], one that finishes at the edge of a seat cushion so the train will crash to the floor. He looks at me, then back down to the track again. He says, "You can try other things. Mostly they won't hurt him."

"But will they help him?"

He shrugs. "I'm a play therapist. And I like the behavioral approach." A flat statement, a non-comment. But it feels to me he is saying much more, that I am speaking to someone in the trenches, who has been in the trenches for a long time, who is battle-weary but full of wisdom. It is as though he is saying, "Here is the only gun that fires. Pick up the bloody gun."

Here's another metaphor that I think is related to the parenting-an-autistic-child-as-war metaphor; Melanie compares her efforts to get her son, Daniel, to speak before it's "too late" for his prognosis to improve to trying to get him out of a burning building:

To ask a person to do nothing for their child or to do very little is unfair. For them to do nothing means they have to fight the overwhelming urge to push away the danger, to run through the flames, to slay the dragon. However hopeless the situation might appear, it is infinitely more difficult to do nothing than even an ill-considered something. I knew a man whose teenage son was stabbed to death in the early hours of a Saturday night by kids his own age who wanted the sneakers he was wearing. His father had repeated dreams --- the day-and-night dreams that I came to be familiar with after Daniel's diagnosis --- in which he was there when it happened, just behind the gang as they circled his boy. There, hidden in the luxuriant green of unkempt bushes, he would be crouching. Or he stepped off the bus just in time to reach over and pluck his son, vibrant and alive, from the hands of his attackers. In his dreams, the five-inch steel blade that pierced his son's chest never so much as scratched his skin. Instead, he took his child in his arms as he had as a baby, running at a supernatural speed, flying even, not knowing where he was going but knowing it was away --- away from threat and danger and harm, away from four youths and their deadly, sharpened blade.

But the dreams were only dreams. The reality was, the boy died. The father slept.

My reality is that my child lives peacefully within a dysfunctional brain while I search madly --- tear myself apart --- trying to think for the both of us how to get out of the burning building of autism. Even using this method --- this play therapy mixed with applied behavior therapy and whatever else Andy brings to bear --- there are limitations. With every learned word or spontaneous moment of play, I see Daniel becoming more like any other child, less "autistic"-seeming, and I know that if he will interact with others as he is now interacting with Andy, with me, with [his sister] Emily, his life will not be entirely ruined by the condition. But there is also a time factor. As he develops so do all the other children around him. He has to race to catch up or never catch up at all. I understand this very well. It is almost as though someone has told me, "If he is going to escape the fire, he must do so early, before the roof caves in."

There's another comparison to armed conflict at the beginning of this quoted passage, where Melanie compares her own angst over having an autistic son to the recurring nightmares of a father of a murdered son; placing herself in the father's shoes, Melanie makes Daniel's autism into the gang of teenage thugs that took the other boy's life.

Later in the same passage, Daniel's autism becomes a burning building that he must escape --- that Melanie has to lead him out of.

All of these metaphors work to convey several things that I think Marti Leimbach was trying to emphasize with them --- Melanie's desperation, her constant feeling that something of life-or-death importance is happening in her son's life, that will determine the course of her son's life, that she cannot figure out how to wade in and help him. Her repeated use of images of battle, of sacrifice, of terrible, outsized, Herculean struggles waged on his behalf, seem like they reflect the gap between what she can do for him --- what she is doing for him --- and what she wishes she could do for him. She reaches for life-and-death scenarios to compare her efforts to, and most often she returns to the battlefield for her metaphor of choice.

While I am sure Leimbach chose these metaphors to highlight her character's sense of living under extreme circumstances, and her frustrated desire to help her son, I also see something in these metaphors that I'm not sure she meant to imply.

What all of these metaphors --- of war, of individual combat, of fleeing a collapsing, burning building --- do is they separate Daniel from a part of himself, and set that part in conflict with the whole person. To save her son, Melanie makes war on ... her son. She doesn't see it that way; she sees her war as being against the thing that has taken her son from her, but Daniel hasn't been taken from her at all. He's still there, he's just not the way she wishes he could be.

This conflict Melanie sees between Daniel and Daniel's autism reminds me of the autism-as-prison metaphor I described in my post about spatial metaphors and autism:

One thing the autism-as-container metaphor tends to leave muddled is where the autistic person dwells in this metaphorical space. It's quite eloquent on the position of the parents, peers and teachers trying to relate to this strange being --- we're given to understand quite clearly that they feel locked out and exhausted from battering at the door --- but what's not always clear is whether the autistic person is in the metaphorical Fortress of Solitude, or whether they are it.

Judy and Sean Barron's 1992 book There's a Boy In Here makes it unusually clear: Sean is inside his autism, his thoughts, feelings, desires, and self obscured from his mother's sight by his intense anger, his tantrums, his reckless, aggressive and often destructive behaviors. But in other books, like The Siege (which I haven't read) and Bruno Bettelheim's mother-blaming opus The Empty Fortress (which I likewise haven't read), it's not clear whether the walls that the authors advocate tearing down imprison the child, or whether they constitute a part of hir, like a protective cocoon or exoskeleton. The act of trying to "break through" to an autistic child becomes a violent one if the latter construction is implied ...

Melanie's understanding of her son's autism in Daniel Isn't Talking is, as I mentioned above, stuck in "But this is not my child!" mode. For her, Autism is a hostile Other that has taken, and changed, her son. Her son's autism might be a part of him, but it's a dangerous, diseased part that Melanie believes Daniel will be much better off without. Because she sees Autism as a separate, hostile entity and Daniel as its victim, she can cast herself as Autism's implacable foe without seeing any tension between that role and the unconditional love of Daniel that the maternal role demands.

Other reviews of this book: Sharon at The Voyage, Kristina Chew at Blisstree.com

Does Teaching Emotional Literacy Foster Compassion?

EXECUTIVE SUMMARY: Time magazine ran an article this week describing a radical new anti-bullying program that tries to teach young children empathy by having them observe a mother and baby, and try to figure out what the baby is feeling. This is supposed to help them imagine themselves in another's place, and also to help them learn to put their own feelings into words. Evaluations of the program show that it does decrease "aggressive behavior" and increase "pro-social behavior," but I have doubts that it's really all that effective against the kind of cruel harrassment and intimidation campaigns so many of us remember from middle and high school. It doesn't seem to me like that's anger boiling over so much as a decision coolly reached that some people just aren't worth treating like people. And I'm not sure empathy training can address that.

An antibullying initiative sure to give Counselor Troi the warm fuzzies

I read this article in this week's Time magazine with great interest --- it describes an educational program called Roots of Empathy that aims to make children kinder, more peaceful and more considerate of others by teaching them to pay attention to how other people are feeling, and to the ways one's own behavior can affect other people's feelings.

Here's a description of how it works from Roots of Empathy's own "About" page:

At the heart of the program are a neighbourhood infant and parent who visit the classroom every three weeks over the school year. A trained ROE Instructor [link] coaches students to observe the baby's development and to label the baby's feelings. In this experiential learning, the baby is the "Teacher" and a lever, which the instructor uses to help children identify and reflect on their own feelings and the feelings of others. This "emotional literacy" taught in the program lays the foundation for more safe and caring classrooms, where children are the "Changers". They are more competent in understanding their own feelings and the feelings of others (empathy) and are therefore less likely to physically, psychologically and emotionally hurt each other through bullying and other cruelties. In the ROE program children learn how to challenge cruelty and injustice. Messages of social inclusion and activities that are consensus building contribute to a culture of caring that changes the tone of the classroom. The ROE Instructor also visits before and after each family visit to prepare and reinforce teachings using a specialized lesson plan for each visit. Research results from national and international evaluations of ROE indicate significant reductions in aggression and increases in pro-social behaviour.

That's the theory; here's a bit from the Time article describing how it works in practice:

At a public school in Toronto, 25 third- and fourth-graders circle a green blanket and focus intently on a 10-month-old baby with serious brown eyes. Baby Stephana, as they call her, crawls back toward the center of the blanket, then turns to glance at her mother. "When she looks back to her mom, we know she's checking in to see if everything's cool," explains one boy, who is learning how to understand and respond to the emotions of the baby --- and to those of his classmates --- in a program called Roots of Empathy (ROE).

...

One of the most promising antibullying programs, ROE (along with its sister program, Seeds of Empathy) starts as early as preschool and brings a loving parent and a baby to classrooms to help children learn to understand the perspective of others. The nonprofit program is based in part on social neuroscience, a field that has exploded in the past 10 years, with hundreds of new findings on how our brains are built to care, compete and cooperate. Once a month, students watch the same mom and baby interact on the blanket. Special ROE instructors also hold related classes and discussions before and after these visits throughout the course of the school year.

"We love when we get a colicky baby," says founder Mary Gordon. Then the mother will usually tell the class how frustrating and annoying it is when she can't figure out what to do to get the baby to stop crying. That gives children insight into the parent's perspective --- and into how children's behavior can affect adults, often something they have never thought about.

When Baby Stephana cries, an ROE instructor helps students consider what might be bothering her. They are taught that a crying baby isn't a bad baby but a baby with a problem. By trying to figure out how to help, they learn to see the world through the infant's eyes and understand what it is like to have needs but no ability to express them clearly.

That last part, the part I highlighted in bold text? I think that's a crucial thing to understand, but I'm not sure children are the ones who most urgently need remedial lessons in it.

Failing to grasp that someone without language will still have needs, and will use whatever other means of communication they have to try to call other people's attention to their need, underlies a lot of the most abusive, callous treatment of developmentally disabled people by their caregivers.

Accordingly, I'd love to see a similar empathy-building program for would-be paraprofessionals, special-ed teachers, home health aides, etc. I think caregivers often fail to put themselves in their clients' shoes, and appreciate the anxiety/stress/pain/hunger/whatever that the client was feeling, and the added stress of not being able to tell the caregiver what they needed, and instead either blame the client for "acting out" or, worse, consider hir beneath blame, so broken and messed up by virtue of hir disability that nothing ze does could ever possibly be a response to anything, just a "behavior" that happens randomly, like error messages from a glitchy computer.

Anyway, back to Time, and back to (some more of) the theoretical underpinnings of Roots of Empathy:

[L]ike language acquisition, the inherent capacity to empathize can be profoundly affected by early experience. The first five years of life are now known to be a critical time for emotional as well as linguistic development. Although children can be astonishingly resilient, studies show that those who experience early abuse or neglect are at much greater risk of becoming aggressive or even psychopathic, bullying other children or being bullied themselves.

That helps explain why simply punishing bullies doesn't work. Most already know what it's like to be victimized. Instead of identifying with the victims, some kids learn to use violence to express anger or assert power. [Bolding and italics mine]

After a child has hurt someone, "we always think we should start with 'How do you think so-and-so felt?'" Gordon says. "But you will be more successful if you start with 'You must have felt very upset.'" The trick, she says, is to "help children describe how they felt, so that the next time this happens, they've got language. How they can say 'I'm feeling like I did when I bit Johnny.'"

When children are able to understand their own feelings, they are closer to being able to understand that Johnny was also hurt and upset by being bitten. Empathy is based on our ability to mirror others' emotions, and ROE helps children recognize and describe what they're seeing.

I really like this idea in general, and think it's based on some pretty sound principles --- especially the ones about giving people the verbal tools to help vent their frustrations, or ask for help dealing with them, and about understanding that much of what we experience as "problem behavior" from others comes when they are experiencing stresses that overwhelm their ability to cope.

I have no trouble at all believing that this type of training greatly helps kids learn to handle their own feelings in a safe, non-destructive way, and to be more considerate of their classmates' needs and feelings. (This is indeed what independent evaluations of ROE --- there have been nine so far --- have shown: lasting increases in prosocial behaviors like sharing, helping others, being fair and trying to include everyone; in social and emotional knowledge; in kids' sense of their classroom as a caring, safe place; and lasting decreases in aggressive behavior).

But I am not sure that bullying --- a sustained, calculated campaign of terror against targets chosen for their vulnerability --- is in the same category as the aggressive behaviors ROE nips in the bud. Bullying doesn't seem to me like a spontaneous outpouring of emotion too intense to be contained, from a person too inarticulate or emotionally illiterate to express it without violence. Most bullies know exactly what they're doing, and have enough self-control not to do it; I know this because they're able to keep the worst of their violence hidden from authority figures. Some bullies are also very articulate and emotionally intelligent, convincing their victims that they are "friends," and guilt-tripping victims for not doing everything they ask. (The comments section of this old post on Pandagon is full of useful insights about bullying, and similarities between bullying and spousal abuse).

I think bullying comes because the bullies have keen insight into social dynamics --- they see that some people are less powerful, less well-liked, less noticed, less valued than others. They see that, they realize they could do just about anything to one of those unfortunates, and they decide, coolly and rationally, that so-and-so isn't a person, or at least isn't anyone worth treating like a person.

In most cases, there might not be any deep emotional turmoil underlying their cruel treatment of so-and-so; they do it because they can, end of story. Empathy training might help somewhat by making potential bystanders more likely to intervene, and stick up for the person being bullied, and it might also make it harder for potential bullies to tune out their targets' feelings if they've been trained from preschool to notice people's feelings.

I also think one of the major factors emboldening bullies is the larger culture's tacit (and sometimes explicit) endorsement of the very ideas bullies are experimenting with: specifically, that there are people who matter and people who don't and that you treat people differently according to which group they're in. All the empathy training in the world won't wipe out bullying if that doesn't change.

Autism Manga!

I finally got my hands on the first volume of Keiko Tobe's ongoing manga series, With the Light: Raising an Autistic Child, which I think does a wonderful job of showing how its protagonist (the young mother of an autistic boy, who in this first volume grows from a newborn to an elementary-school-aged kid) adjusts to the discovery that her son's life probably won't go the way she had fantasized before he was born.

Near the beginning of the story, when Sachiko (the protagonist) first learns that her fussy, temperamental baby boy, Hikaru, is autistic, she goes through a period of mourning.

She cries when she sees other people's cute, talkative, well-mannered toddlers (like the one shown at left) and thinks to herself that Hikaru will never be like that.

Particularly, she wishes he would call her "mommy." Hikaru doesn't speak, you see.

He also won't make eye contact, and avoids directly interacting with anyone.

This makes Sachiko miserable at first --- she feels like Hikaru is rejecting her, and at the same time her marriage is suffering because her husband, Masato, works long hours and gets angry with her when he comes home and Hikaru is having a tantrum and can't be calmed down, which happens often.
Sachiko is loneliest in this first part of the story, when she doesn't yet feel anything but grief toward her son, and she's estranged from her husband, and her husband's family thinks she's a lousy wife and mother, and she can't bear to be with her friends anymore because their typically-developing children depress her.

The only person in her life who offers her a sympathetic ear is her frail, elderly mother, from whom she keeps most of the less-pleasant parts of her life secret for fear of making her worry.

But the story doesn't stay in this rut for very long; little by little, Sachiko learns to spot the signs that Hikaru loves her, and since love is the main thing she wanted from him, this makes her happy.

Here's the scene that represents this turning point:

As sugar-coated as this might seem (Oh, he really does love me! He picked me some flowers!!), most of what happens after this point (as well as all that's come before) makes it clear that Sachiko's life is not easy. (Neither is Hikaru's, though --- that's one of the things I like most about this portrayal of a family with an autistic member: the author/artist clearly empathizes with Hikaru as well as Sachiko, and neither pits one against the other nor treats one as an extension of the other).

One of the major things that changes, once Sachiko realizes she loves Hikaru, is that she starts to notice external, systemic barriers Hikaru faces, and fights to change them. That's another thing I really like about this book --- it explicitly places Hikaru's autism, and Sachiko's efforts to get his mainstream elementary school to admit and accommodate him* in a wider context of societal ableism. Characters who are initially hostile to Sachiko and Hikaru showing up at their child's school or day care are often shown to have a disabled family member of their own (in one lady's case, an elderly mother who has trouble walking and needs physical therapy) whose struggles to get their needs met in a society that doesn't see them, and isn't built with them in mind, brings the initially hostile character around to Sachiko's side.

Hikaru does learn to thrive in his new environment, but it's very much a team effort that allows him to do so. His mother, his father, his special-ed teacher, the other teachers in his school (who have all had a crash course in Understanding and Dealing with Hikaru Azuma, courtesy of the principal), and his classmates all do their part in keeping Hikaru safe and happy, and in teaching him, little by little, to talk, to play with other children, to share, and to be polite and friendly.

The main reason Hikaru does so well, it seems, is that other people are willing to meet him halfway: find out what he understands, what he wants, and start there.

If you're a manga reader, you might want to pick this one up. While it's true that Sachiko, and not Hikaru, is the point-of-view character, and as such we see Hikaru primarily through her eyes rather than his own, I still think there's a lot in this story for autistic readers to appreciate. For me, the radically pro-disability-rights sentiments expressed in this story (in Sachiko's growing conviction that her son should be able to participate in society as fully as he can, and that, to make that wish come true, she'll need to enlist many other people's cooperation) and the explicit tie-ins to other disabilities, made With the Light a lot more interesting than most raising-an-autistic-child memoirs.

It was also interesting to see some indications of how people in Japan think of autism, particularly which misconceptions are common there. It seems like the Japanese lay understanding of autism is rooted a lot more in folk psychology than it is here. In America, I think we mostly think of autism as a disease, and a very big, scary one at that. In Japan, I got the impression from With the Light --- and its helpful Translator's Notes! --- that autism is seen as an extreme manifestation of introversion. (The Japanese term for autism, I read, translates roughly to "self-closing syndrome" or "cloistering syndrome").

*This book gave me the impression that the usual practice in Japan is for disabled students to go to their own specialized schools, though sending disabled students to mainstream schools isn't unheard-of, either. In the U.S., it's a lot more common for disabled students to go to the same schools as everyone else, even if they stay in separate special-ed classrooms all day.

Help Jessica Davanzo

Shiva at Biodiverse Resistance has a post up about an American-born UK resident named Jessica Davanzo, who is facing deportation from her adoptive homeland because she left her abusive, UK-citizen ex-husband before her two-year spouse visa had been renewed.

Here is her story:

I originally came to England several years ago to study sculpture....I met and fell in love with a man whom I later married on October 3rd 2006, I moved over to England as his wife on October 15th 2006 on a 2 year spouse visa...I went immediately into full time employment, contributing to the local economy and have endeavored to immerse myself in all aspects of my new life and become involved in the community....sadly just after our marriage my husband changed drastically and became controlling and abusive to the point where I feared for my life and had no other option but to leave despite the fact that I tried all forms of counseling and anything I could possibly do to save our marriage...but my fleeing our marital home came just shy of the time when my marriage visa would have been up for renewal for indefinite leave to remain....I took on a management role in a new town and began my life again.....I worked extremely hard and built a new life for myself.....Under a tremendous amount of stress and pressure of my marriage breaking down and being alone in a new town taking on a new management role... I ended up in hospital with a rare neurological disease called Guillain-Barre syndrome which left me paralysed out of work and in hospital for some time....[...] After I recovered I felt compelled to take a job working as a carer for a woman in a wheelchair who also suffered from a neurological disease, though hers [was] genetic and more severe....After going through what I did I was humbled and wanted to make a difference in someone's life...Since that time I have become deeply immersed in my employer's life ....taking part in ensuring her every day [...] needs are met as well as helping her follow her dreams....I have completely given up my life in America for the one I have here, a place I know as home...after all this time, and all the struggles, first just surviving on my own after nearly two years of abuse...then fighting for my life in hospital and finally recovering and getting back into the work force, fully supporting myself and always paying national insurance etc.....never once getting recourse to public funds or income support....things had finally turned around...I got my own house, a job and my friends and family in a place that I loved only to get a letter from the Home Office alerting me that my application had been refused with no right to appeal....I am shocked and appalled that the message sent from Lawyers and Home Office seemed to indicate that had I stayed with an abusive man and risked my life I would have been granted the"privilege" of living in England...but instead after years of making a life for myself I am now being told that I must leave the only home I know.

What's at stake here is not just the quality of Jessica's life --- disastrous though it would be for her to be compelled to leave everyone she knows, start over and rebuild her life from scratch again --- but of Roxanne's (her employer, Roxanne Homayoun) as well.

Shiva's press release explains:

Roxanne, who has physical and visual impairments and requires 24-hour assistance, and is an activist for disability rights with an MA in 20th century history, said "Jessica is such a truly positive, honest and principled person that she has helped me to see that many of my dreams are still achievable, they just need modifying. I would be absolutely devastated if Jessica is deported."
...
Jessica's case brings together issues of vital concern for feminists, disability rights activists and all those who support the free movement of people across borders. The UK Government's decision to demand that she leave the country shows a complete disregard for the circumstances of women fleeing abusive relationships (if she had stayed within the relationship and continued to submit to her ex-husband's violence, she would have been permitted to stay in the country - what message does that send to women trapped in such situations? This is victim-blaming at its worst - women being punished for getting out of a life-threatening situation or rewarded for staying within it) and for the incredibly important role of PAs [Personal Assistants] in maintaining disabled people's independence.

The letter Jessica received from the Home Office claims that forcing her to leave the UK is not a breach of Jessica's human rights under Article 8 of the European Convention on Human Rights. However, they have totally failed to take into consideration the human rights of her employer, Roxanne, whose physical safety, freedom of private life and ability to participate in political society would all be put in serious jeopardy by the loss of her PA, given the extreme rarity of PAs with whom disabled employers are able to build up the sort of relationship (itself arguably "family life" under Article 8 of the ECHR) enjoyed by Roxanne and Jessica.

If the UK Government cared either about women survivors of marital abuse or about disabled people who need assistance to live independently (for whom it can take an extremely long time to find a PA with the right attitude to genuinely support their human right to choice and control over their own lives, and for whom losing such a PA could easily result in risk of institutionalisation or life-threatening neglect), then it would not have threatened Jessica with deportation. Jessica Must Stay!

Without Jessica, the quality of Roxanne's life would immediately deteriorate. She'd be on her own until she could find another PA, who may or may not be willing or able to help her maintain the same way of life she had with Jessica, and who in any case will be a stranger, not a trusted friend. At worst, as Shiva mentions, she might never get another PA and be institutionalized, or she might get a PA who neglects or abuses her.

It strikes me as particularly disgusting that this relationship, from which not only both partners, but also British society in general, derive such benefit should count for nothing to the immigration officials deciding Jessica's fate, especially when her marriage would have been sufficient to keep her in England. This, it seems to me, is a double standard privileging the nuclear family over all other possible household configurations.

There's a petition online here, telling Jessica's story and asking that she be granted an appeal, and a Facebook group supporting her.

You can also email the UK Home Office at public.enquiries@homeoffice.gsi.gov.uk, or, if you want to go right to the source, there's the UK Border Agency's case-resolution directorate, which you can reach at UKBApublicenquiries@ukba.gsi.gov.uk

Since Jessica used to be a US citizen, and would be deported here, I might as well throw in the e-mail contact form for the US Department of State. Let's get Hillary Clinton on their case!

Good luck, Jessica.