Wednesday, November 26, 2008

Abuse by Proxy: Another Front in the War against Autistics



As a woman on the autism spectrum and a self-advocate for autistics like me, I’m appalled by the case of Thal and Julian Wendrow, of West Bloomfield, Michigan, who were subject to abuse by the criminal justice system, having been accused of sexually molesting their autistic daughter. The charge generated from text typed by the girl through facilitated communication, a method in which an adult stands behind the seated child and puts hands on the child’s hands as she types. Its proponents see it as a sort of training wheels, which the child will outgrow. Though there might be a neuromuscular value in giving the child a feel for their fingers on the keys, proponents promise much more and deny that the adult’s hands could be really composing text, rather than the child’s. So when the Wendrow’s daughter typed the message that her father had been raping her for many years, the Wendrows were arrested and incarcerated for months without trial, he for multiple cases of child sexual abuse, she for not stopping it. Their daughter was placed in foster care and their younger son, who has Asperger Syndrome, was placed in a home for troubled, delinquent boys.

Indeed parents—as well as carers, professionals, members of the clergy, others with power over the lives of autistic children and adults—have on tragically many occasions harmed, even murdered the autistics under their care. Some have murdered through attempts to cure, obliterate, even exorcise the demon autism out of their children and wards. Others have murdered presumably out of emotional breakdown from caring for their autistic children. Others, for reasons hard to fathom.

Consider the extremely short life of autistic Marcus Fiesel, age 3, in the Cincinnati area. Under foster care, Marcus’s foster parents did the unthinkable. Before leaving for a family reunion, Liz and David Carroll, with the help of a friend, Amy Baker, taped Marcus’s mouth shut with duct tape before binding his body in a blanket. They left him for days in a closet
in the middle of summer. Time of death is uncertain because the Carrolls and their friend took little Marcus’s body to an abandoned incinerator and burned it.


In the midst of finger-pointing among the trio, the Carrolls eventually were convicted, first Liz, to 52 years to life, then David, 16 years in exchange for giving testimony against his wife. Baker was given some leniency, despite being fully complicit by the Carrolls, and was to be extradited from Kentucky to face reduced charges but all charges have now been dropped and she is free.

Among important features of the Fiesel case is that the circumstances were so egregious as to generate public outrage. Another noteworthy feature is that at least the Carrolls received sentences that gave a nod toward the seriousness of the crime, though just a nod. In most cases, if one murders an autistic conviction is far from certain and sentencing is usually far from punitive.
The underlying assumption is that autistic people are hardly people at all, certainly not whole people whose lives unfold as others’ do, whose developmental trajectory and particulars will proceed in fits and starts like those of most people, achieving what they achieve, much the way neurologically typical people do, even though autistics are astonishingly different, seemingly unfathomable, sometimes dauntingly difficult to care for, and often incapable of independent living. There is implicit compassion in all our systems for those who appear to have gone off the deep end, as well as those who torture autistics to modify behavior through application of so-called aversives and sadistic religious rituals.

No other brain disorder has been stigmatized like autism. Look around you. The alarmism about autism is ubiquitous. For example, in a public service announcement on VH-1 classic, rock musicians--who have made their fortunes acting weird--compare the incidence of autism with cystic fibrosis, diabetes, and childhood cancers. The sky is falling. Or so it seems.

My perspective might suggest that I take a dim or at least skeptical view of the Wendrows and their situation. Quite the contrary. On the one hand they have been subject to a phenomenon already seen in well known child sexual abuse cases like the McMartin pre-school in California and Little Rascals in Edenton, North Carolina, a case documented over some years by PBS Frontline’s Ofra Bickell. In the Little Rascals case, one of the most damning outcomes was the conviction and long term sentencing of one of the Edenton child care center’s teachers, a 20 year old mother of a toddler, to a draconian prison sentence.

Eventually the charges were dismissed and all those in prison released, as was the case with the McMartins. The parallel with the Wendrow case is an overly zealous approach to child sexual abuse involving scapegoats who are usually innocent enough they are easy for the systems that manage us to pounce on and punish.


But there is also a disturbing dimension of this case that is coming to be seen in families of autistics. Consider Debbie Storey, autistic mother of two autistic sons.


Debbie repeatedly approached social services in Sussex, England to demand services for her sons, only to be declared an “attention seeking” mother. From a grotesque outlook, they transformed Debbie’s inquiries into a disorder called Munchausen’s by Proxy, in which care-givers may go so far as to inflict pain and injury upon their children so that they will be subject to an endless series of medical treatments that satisfy some pathological need in the adult. I don’t know how school social workers decided they had this expertise, nor what Debbie Storey may have said, if anything, to ignite suspicion. Asocial, she may have reacted with vocal and body language they deemed odd. (I may well have under those circumstances.)I don’t know.

The Storeys from that point on lived in fear of the removal of their sons. One son, interviewed alone by a panel of 22 officials, was told afterwards that his lack of social success and his odd clothing showed the extent of his parents’ emotional abuse. Mere months later an even greater tragedy befell Debbie Storey due to the System's declaration of her diminished capacity for mothering her sons. Debbie came down with severe, unremitting back pain and doctors, dreadful to say, denied her appropriate diagnostic evaluation, deciding that this was indeed more of Debbie’s attention seeking behavior. In effect, the pain was all in her head. Adding to the tragedy, Debbie realized that this conclusion could trigger the process of losing her sons. She could do nothing. The decision of social services was made in early fall of 2004. Debbie Storey died of untreated kidney cancer in May, 2005.


Unlike Debbie Storey, Thal and Julian Wendrow were not themselves autistic yet something comparable happened to them. The efficacy of facilitated communication in enhancing the communication skills of children is much debated, but at the very least it would be impossible to see FC as hard evidence because of the intrusion of another pair of hands in the typing process. Who exactly was it reporting the abuse and in what other ways might they have pressured the child for those statements while coaching her? In the day care centers in California and North Carolina, children were coached, prompted, and interviewed for hours on end until they agreed to statements that couldn’t possibly have been true.


It’s not hard to imagine that the Wendrow girl was especially susceptible because, as an autistic, she has known in her own way that the worldview of non-autistic adults is the one she needs to construct for herself despite lacking shared frames of reference with them. They are the ones whose reality counts. Even if she were becoming increasingly fluent, it would be almost impossible for her to come up with those statements on her own. Had her father abused her she would be highly unlikely to have a will to tell an abuse story to another non-autistic adult. Had authorities done their homework they would have known to look for the signs researchers have found typical in sexually abused autistic children: acting out sexually, running away, and attempting suicide.


The sad irony is that the suffering the parents were made to endure till the cases against them fell apart was in a sense an attack on autistics by proxy. The removal of the Wendrow children upon dubious evidence must have traumatized them. Moving an autistic child from familiar surroundings and people into an unknown setting with strangers suddenly replacing parents is a devastating attack on the child’s sense of safety and developmental progress. And moving a child with Asperger Syndrome into the midst of juvenile delinquents is nothing but punitive. (The Wendrow boy was also interrogated for hours much the same way Debbie Storey’s son was.) While direct attacks on autistics continue seemingly unfettered, this new form of indirect attack, under the guise of care, raises insidious new possibilities for abuse.




Monday, May 12, 2008

Some News & Regrets & an Apology

Just as soon as my spring/summer pay starts coming in I will be publishing a revised version of WFAP? The number and extent of the changes depends on cost but one change that will happen ASAP is that the Foreword will be replaced. The number of pages and the page numbers will remain the same and so will the Table of Contents. What goes in are two tributes, one for Patty Clark, a long-standing, fierce & courageous activist in Atlanta who passed away a couple of years ago. There's one short piece of her writing in the book but she was quite prolific & I invite you to go to her memorial site to read her works & understand her stature in the autistic community. http://www.pattymemorial.org/ The other tribute is to Debbie Storey, another of our autistic women heroes who is as well a martyr. Her story is utterly tragic yet galvanizing. (Here are her stories: from life & after her death. (The second link has the video clip of the BBC's coverage.) http://64.233.169.104/search?q=cache:hs2m7USvUQkJ:news.bbc.co.uk/1/hi/health/3687612.stm+debbie+storey+autism&hl=en&client=firefox-a&gl=us&strip=1;
http://www.parents4protest.co.uk/p4p/mum_feared_social_services.htm


The existing Foreword will be deleted because it constitutes one of the biggest judgment errors of my lifetime. I blew it! The book began to take shape in, as I remember, in 1999 as lots of us women autistics contributed ideas, scraps of text, whole articles & energy & thought. One of the people peripherally involved was Judy Singer, a woman who self-identifies as being on the cusp between AS & NT. When contributing editors were meeting in Boston, Singer arranged a trip to the States to coincide with our meeting in October 2001. We invited her to stay in our room at the hostel and there she wrote what is mostly in the Foreword.

While there, I asked Singer to identify one, just one, autistic trait in her makeup. If she were on the cusp surely there would be one. No! Not one! (My personal belief is there's no such thing as a cusp, that AS wiring is a toggle switch: you either experience the world autistically or you don't, no matter what array of other traits you have or how you manifest to others. It's personal because I have a hard time imagining my being that ambidextrous. No matter how close I am with dear nt friends, our wiring is clearly different.) Yet I accepted Judy's submission, even though it was a year and a half late.

I knew Singer was the founder of ASPAR, the group of children of Asperger parents seeking healing. Early on in the book's chronology I suppose I didn't take ASPAR seriously enough. Word was that anyone who said anything slightly forgiving about Asperger parents would be kicked off the list. And one of the site's favorite pieces was by a woman who told the tale of bringing a boyfriend home at Christmas, only to have him intercepted by Dad who spirited the boyfriend to the basement to view and be subject to a very long perseveration on his train set. Fair enough: "it's Dad again!" But I'd be damned if I could see the tragedy in that. If anything, it seemed to be a personal reaction based on a string of disappointments to that particular writer, that would have currency in the intimate setting of an online support group. In short, they were entitled to their safe space for sharing and venting as they wished. I was outside their scope, therefore an onlooker whose business it was
not. A similar group of children of volatile, emotionally immature dads would have resonated with me. Fair enough.

But during those years ASPAR's safe space for mutual support began to expand & permutate into a PAC (political action committee). And under Singer's direction, ASPAR ventured into militancy, an investment of force into preventing the Asperger parent from gaining child custody in cases of divorce. Now, some might say that the AS advocacy against NTs is comparable but NTs have supremacy. AS people are voiceless, powerless, at the mercy of institutions. Militancy is justifiable for us. But to militate against already marginalized, discounted, disposable persons because they are Aspers is a personal attack that defies any notion of social justice. As well, to isolate a single trait as categorically predictive of child abuse is far from the best interests of the child. This means other, more terrible qualities in a parent are ipso facto allowable by comparison.

Put in more intimate terms, I am an Asperger mother (see article in WFAP?) & so are many of the book's contributors. No question we are challenged by motherhood. No doubt we are odd. No denying we have all those traits ASPAR likes to inveigh against, but that doesn't mean we are negligent or abusive of our children. It doesn't even mean we are a royal pain in the butt to them. It's as Darcy O'Brien says, "a way of life, like any other." (My children, now in their twenties & uni students, have told me they are glad to have had an eccentric mother--rather than the conventional kind--because they were under no pressure to conform to social expectations. They could find themselves, find their way, without heavy-handed parenting. FWIW.)

Beyond this is agitation, I am told, is a demonization of Aspers. Autism is apparently, by their account, connected to many evils. Calling Hitler an Asper is manipulative rhetoric indeed. (Ted Bundy & George W Bush & Dick Cheney & other cheerful souls with blood all over them are NT.) There's something in this sort of thinking that relates to Mikita Brottman's legendary ignorant maligning.*
http://chronicle.com/free/v52/i04/04b00701.htm

How can this book possibly be associated with a point of view antithetical to everything it stands for?

I am so overwhelmed by life I've become isolated & out of every which loop. This has been especially true during a recent three-year period of workplace harassmen
t (put mildly) culminating in heart disease. Whatever lists I'm on are in digest form and almost entirely unread. I've been so preoccupied I read but hardly ever reply to emails anymore. So I deeply regret not having been more vigilant about this. Singer's piece must go.

But....what I
apologize for, not simply regret, is that I had no business publishing someone who had clearly described herself as being NT, and had made a submission a year and a half after the submission deadline! These realities excluded her article from the scope of the book. I apologize & fear that this has been detrimental to the book & to the case of women autistics. Perhaps a new edition will cut the losses somewhat.

* Mikita Brottman wrote an inflammatory and badly written article damning Aspers in academe that first appeared in the Online Chronicle of Higher Education, followed by reprints in many newspapers across the US. After you've followed the Brottman link (above), do have a look at Kathleen Seidel's marvelous deconstruction. http://neurodiversity.com/weblog/archives/54/autopsy-full-text If you are new to the neurodiversity site, do look around it while you're there. I'm sure you'll find it a stunning achievement in both range & depth.





Saturday, January 26, 2008

nts & NTs

Permit me a rather extended analogy.

In the late 1970s when feminism was the object of considerable public focus, I worked as a tech writer in the petroleum industry, in good-ol'boy ground zero, Tulsa, Oklahoma. I remember attending a feminist poetry reading there & then and found myself feeling dirty, unacceptable as-is to those present. I wasn't conspicuously so but I knew I was unlike the women present--women certain they were, by contrast to men, the loving ones, the caring ones. (I refer you to my 11 December blog for an explanation of my estrangement from this thinking at a deeper level.) Up top I was working among misogynists all day long--and had been in previous workplaces in Detroit & Toledo. I was stuck with them. I had to deal with them. I had to make concessions & compromises just to get my work done. I was very seldom the object of sexual harassment--co-workers said the executives saw me as "brilliant" & "scary"--but I experienced my second rate humanity at every turn.

I struggled to keep it together and failed to be compliant enough to be successful in the business world--managers would crack what they believed was a joke, gave that visual survey of nearby women underlings to receive the requisite chuckles of appreciation & I would either exhibit flat affect, or no reaction to something that didn't strike me as funny, or barely suppressed huffing over the obvious manipulation. One awful man relied on me for ideas
he couldn't invent on his own, since he spent his MBA studies chasing freshman students. The women who were successful in Tulsa were with no exception daughters of prominent men, who learned at their "daddy's" knee how to handle "daddy" admiringly. My experience with workplaces was a veritable socio-pathological circus.

The thing is, as child growing up in an Irish family with deep roots in poverty & despair, I didn't have the luxury of the kind of pristine feminism the women at the reading had embraced. I had to get my work done. I had to keep my job. I had to get it done.

Even the presence at the reading of my favorite feminist, Germaine Greer, didn't help, though I thought, considering her writings, that she may have felt somewhat restricted there. I remember her saying to someone that she rather liked North Tulsa, the most unfashionable, working class part of Tulsa, and the woman said something that presumed Greer was talking about hip, aesthetically funky, Reservoir Hill, a
charming sliver of the north side. Greer, a woman passionate about her working class roots, meant no such thing. She meant the nice serviceable, unassuming, modestly priced cottages, charming enough were anyone to notice.

This was a eureka moment for me.

But one of the concurrent realities in the workplace has always been the presence of men who were not misogynistic, were not suits, didn't have executive airs & often made good work buddies. Were they sexist? Yes. Sure. But they were such a far cry from the creepy & treacherous misogynists, they were impossible to classify with the hubristics of the corner desks. This means it was necessary to make distinctions. When asked as a high schooler what my t-shirt would say, make distinctions was my answer. People who don't make them create much mischief. And one troubling thing the avid feminists began doing is venting their indignation upon lower case men because they were accessible and non-threatening. I've seen professors be stomped on for the use of male pronouns by such women, while their often misogynistic significant others, upper case Men, are off the hook.

I now feel an urge to transfer this case to the way things are in neurotypicalism. I'm not sure I can put my finger on it but I fear that a distinction may not be made often enough between nts & NTs. NTs are the embodiment of the dominance of NT hegemony. They are at one with the institutions & centers of power responsible for brain hegemony. Chances are they align themselves on the culturally rewarded side of all the isms. They have high social fluency & associate with others like themselves.

NTs are the beneficiaries of the goods of cultural hegemony. nts, on the other hand, either eschew those benefits for reasons unknown (some may choose not to be assholes), or have become estranged from the bennies & perks for any number of realities:
  • lack a high social affiliation need and/or dislike those with a high social affiliation need
  • are shy, introverted, and/or reclusive
  • have other neuroatypicalities besides autism, to include things we call mental illnesses (e.g., depression)
  • are slow to catch on to subtle, unspoken cultural rules (sub-clinically, you might say)
  • grew up in a different national or regional culture than the one they are presently expected to function
  • have roots in poverty and/or lower social class
  • have been devoting significant time to managing an illness or caring for someone with one
  • grew up pre-occupied with competitive individual sports, dance, music performance
  • find socializing tedious and highly social people insufferable
  • find odd ducks worth the effort of knowing
  • are eccentric, disdain conformity
  • are sensitive and perceptive
  • and more?
Trouble is these nts will blow it. Sometimes a lot. They are inclined to blow a hoped for bond with an a-typ by failing to recognize informative discourse for what it is. An a-typ mentions a difference in circumstances and abilities only to have the nt jump to the conclusion that the person is asking for commiseration or consolation. Responses include: "I get that way, too!" "I don't think you're like that at all." "Yeah, but you are so successful." All of these leave people like me heartbroken. We have been telling something as a matter of fact and hoping that the friend would put it in their field notebook on us so as to, perhaps, anticipate the impact of a particular issue or event on us--the way we, out of necessity, take note of significant others' requirements and limitations. I tell these things so that friends may know me in greater depth than is available through my social interfaces. I tend always to hope that my matters of fact will also serve an educational purpose for the confidant, enabling them to grasp the range of brain wiring they have access to in their daily lives. They just sometimes don't get i and that can be bitterly disappointing. But they are not the problem. They mean no harm. They are, in the main, accepting. Often they like us. They are nt in an NT culture, just as we're nAt in an NT culture. They are not NT culture itself nor its minions. We must make this distinction, despite its heartache, frustrations, and interpersonal burden. Because there are some with considerable power who do not wish us well at all, mean us harm, would do away with us if they could. They are behind our powerful institutions and don't want anything to do with us, much less be our allies. We need to cut our allies some slack even when hard-pressed to do so.



Thursday, January 3, 2008

Indistinguishability?

This blog is a comment I made on another blog. An autistic blogger had mentioned speaking out against ABA (Applied Behavior Analysis) to which a concerned parent wondered what was wrong with ABA. This is my response.
~~~~~

First off my official dxes are chronic major depression & severe ADHD-I ('I' stands for inattentive, meaning the 'H' is inside the head that sits atop the body of a slug) "with autistic traits." Second, this is MY take on it only. Seize what you can use is all.

On the surface of it I have heard (from someone crazy enthusiastic for ABA) that ABA requires hours & hours & relentless hours of concerted effort by both parent & child. As someone on the spectrum with a son who is likewise I can't imagine either of us surviving this process. Even when the parent is a full tilt extravert with an inordinately high affiliation need, the autistic kid is apt to need time out & maybe safe space in the home to rock, spin, toe-walk, avoid eye contact--whatever self-soothing is necessary to recover from such rigorous training.

ABA appears also to be woefully de-contextualized. "This is how you must act" as opposed to "you need to know how act this way in social (i.e., public) situations in (e.g.) the USA of 2008," the assumption being that there's a distinction between the impression you may need to make at times & who you are. This is heady stuff but it's worth some thought. And besides something like Carol Gray's social stories does exactly that (though maybe not with my cynical take ;-)).

The concept behind this is that we—no matter particular dxes—lack real life templates for just about everything. I’m going on 59 years of age & still have big problems perceiving things in a pattern. My motto is always “[shrug] people must have their reasons,” reasons I have little capacity to grasp or make sense of. Any educational resource that elucidates the templates is from my POV superior to resources of behavior mod.

The idea is to show the pattern, reveal the scenario. I teach English Composition full time & I work very hard to encourage students to size up writing situations (via the rhetorical model) so that they are not only able to dish out a passable so-called academic <--?? essay but make reasonable conjectures about how to approach the much, much wider variety of writing situations they will encounter in life.

I hope this analogy is informative: equating "good writing" with a fluency of limited application is misleading. Likewise equating, say, "hugging mom" as an absolute value means what ABA doing is training rather than education. It's not true development because development does not take place in a vacuum.

Perhaps if one could pick & chose from ABA what may TO THAT PARENT make sense, such a scenario may not apply but, having sat in that dreadful room listening to every which expert tell us how deficient our son was I'm inclined to think that many parents feel so devastated by this grim outlook they sacrifice their own instincts & core values & sometimes the amusement or awe they feel about certain of their child's ways in order to achieve for their child a relinquishment they see necessary to the child’s future prospects. The word used by ABA in its goals is that your child be “indistinguishable” from other [read: popular] children. To this odd duck this is scary talk. Indistinguishable? (Ouch!)

It’s alluring with such psychiatric negativism to sign on to such a promise. Truth is in the big picture things unfold in fits & starts & the child’s individual nature will take that unfolding in directions you won’t see at this point--& in the long run these may put you & your child in a surprisingly good place. You didn’t ask for advice but if you had my advice would be “Relax. Be confident you’ll do right by your child & your child will thrive no matter how dire your present circumstances may be. ”

Of course,I don’t know you, your child, or your circumstances but I have a feeling your post shows you’re doing a good thing, devoting thought to options.

I will finally say a couple of things. First, I know people who have worked with autistic kids who do NOT see my thinking as unrealistic & wrongheaded. This past summer I met someone who used to use tones (hums, actually) to relate to autistic kids assigned to her care. An autistic child would tone back with the same or another tone & in time, through this relating on the child’s social terms, she would have a real relationship with the child & the child would be thriving & willing & able to reciprocate according to the teacher’s social needs . Beginning from the POV that the child has something to offer to his/her developmental process as well as the adult/teacher/therapist/parent appears to have a powerful advantage.

Also, my experience with my son as well as my own developmental trajectory have taught me that acceptance & the genuine esteem of important others are fabulously powerful. We were in our son’s cheering section—even if that meant letting him off the hook from all those play dates we were being commanded to arrange & our son had no use for—& through that he has seemed to flourish.

When parents are so affiliation-oriented they see nothing whatsoever interesting/funny/compelling about their child & everything to compel social acceptability, ABA is to me a dubious, even dangerous strategy. When parents love their child as-is they are in a place to venture into growth & development & transformation. And if they find ABA attractive & choose to participate in it, it’s almost certain to be ABA on their own wholesome terms, which means devoid of the doctrine of indistinguishability & modulated into a humane, user friendly :-) process.

I do hope you can glean something of use from this. All the best to you & your child.