Draft copy for revision to Women from Another Planet?

Hello. I couldn't get this to show thumbnail portraits but here is the draft text of tributes to be added to WFAP?. Comments welcome. Also, if anyone can unearth Debbie Storey's birthday and year, I would appreciate it greatly. She lived in Essex. Thanks.


Remembering Autistic Women
Patricia E. Clark


April 13, 1944 - July 17, 2005

Patricia E. Clark died from complications of a stroke on July 17, 2005 in Atlanta, Georgia.

I am pleased to have included a piece by Patricia E. Clark in this book and to know that Dr. Ava Baker used her input to our email exchanges in the first two chapters focusing on our email explorations of what we are. Indeed Patty’s contributions in her sadly shortened life to the autistic community in defining its/our configuration, depth, and breadth are breathtaking.

Not only did Patty accomplish much in her public life as an autistic advocate, but in her own life as well. Considering the challenges of getting through the day, she took risks to assure that her life be rich and vibrant. This included, among many things, moving clear across the USA in her sixties from the desert Southwest to humid, temperate Atlanta, Georgia to make a new life with partner Jared Radin. Once relocated, Patty didn’t lag for a moment. She was willing to press on in addressing audiences antagonistic to AS concerns, appearing at conferences and taking the chance that something of her message would get through and provide critical insight tragically missing in the community of parents and professionals who have declared themselves the autism community. Patty was irrepressible and courageous. Searching for a way to encapsulate her contribution, I could do nothing more powerful than present this, the crystalization of her prophetic impact which I urge you to read and meditate on:



[Italics mine as follows.]
From the writings of Patricia E. Clark:

"Over 50 years ago I was diagnosed with autism. With the main "treatment" at that time being institutionalization, and forgetting the child was ever born, I was simply allowed to find my own way. No one, including me, was told that I had a disability. The atmosphere at the time was blaming the mother for being distant and cold - a "Refrigerator Mother." In self-defense, my mother never told anyone about the diagnosis.

Since re-diagnosing myself a few years ago I have come to a fair understanding of the disorder called Autism, and these links are intended to explain some of that. The primary thing I want to get across is that we are people of a different nature, not walking mistakes. There is good as well as disability in our differentness. We are more to be studied than pitied. Oddly, professionals dealing with "the autism problem" seldom seek the advice of adults with autism when they write out programs.

I have received a number of very long emails with plans for a child's future in great detail for the next 10 or 15 years, and also long, detailed accounts of what a child cannot do and pleas to have me tell the parent how to fix the child. The answers are twofold: (1) after 10 or 15 years the child will be pushing to move in certain directions if able to communicate. Communication is not necessarily in speech - children should learn keyboarding or sign language if they have great difficulty speaking. (2) I cannot "fix" your child, and neither can you. Some have metabolic problems that can be addressed, and you might find those. Most simply learn a lot as they get older and look very different at age 9 or 18 than they did when diagnosed with autism at age 2 or 3. Believe in that change and help the child learn.

It may seem surprising, but people with autism need peer support. Once we can communicate with our fellows and see that life can be joyous, not just shameful, with our neurological setup, we can accept ourselves and go on to do what we can do. There is no need to turn inward and keep the disapproving eyes of the world tuned out, once we understand that we are acceptable human beings as we are."




Remebering Autistic Women
Debbie Storey


- 24th May 2005

I haven’t surveyed the contributing editors, nor the many other noteworthy contributors to the book, but I would bet anything that Debbie Storey’s story resonates deeply with each and every one of us, and especially with those of us who are mothers.

Debbie Storey was a parent of autism spectrum children who was herself on the spectrum. She and her husband lived with their two sons in England where Debbie, troubled by her sons’ circumstances in school, sought help from the social services system. Little did she know that doing so, advocating for her children, would brand her an unfit mother. Attending case workers surreptitiously prepared a report documenting their belief that Debbie exhibited “attention seeking behavior” and that she and her husband were inflicting psychological abuse on the boys. As part of the ensuing investigation, one of the boys, Ben, was interrogated by a panel of 22 social service officials, and the process appears to have been traumatic to the boy who was approached by one worker afterwards who told him that his odd clothing and lack of peer social success were a consequence of his parents’ psychological abuse.

In the UK this phenomenon has been cast as a bizarre social permutation of Munchausen’s by Proxy, a disorder whereby parents become obsessed with finding and treating imagined illness in their children, to the extent of fabricating medical evidence through sometimes torturous assaults on their children. It is difficult to see the seeking of ordinary supports as being even remotely associated with such life-threatening pathology, but those of us “with” can easily infer that this assault on parents, because of our oddities, is essentially an assault on us—by proxy!

For some months, the Storeys lived under the omnipresent threat of social services arriving on their doorstep to remove the boys to foster care. After months of herculean effort—including testimony by such ASD heavy hitters as Lisa Blakemore-Brown—the Storeys were taken off the watch list.

In the meantime, Debbie was becoming increasingly and seriously ill. But when she sought help for the pain that was overtaking her life, she was met with betrayal by doctors who fixated on the likelihood they felt confident in ascertaining, that Debbie’s ASD gave her distorted (read: exaggerated, fanciful) perceptions of pain. They sprung to this conclusion, thus eschewing any serious diagnostic effort on her behalf. (It has been reported that her friends believed Debbie’s fear of losing her sons to care may have influenced her sense of whether she were entitled to serious medical care.) In March of 2005, Debbie was finally diagnosed with end stage cancer in her kidneys. She died in May.

In the aftermath, Essex social services responded tersely, "We are aware that Mrs. Storey was sometimes unhappy with what we were able to offer but we worked very hard to understand and respond to the complex circumstances of the family." Unhappy isn’t half of it!

Debbie Storey was an activist--evidenced by her avid participation in elists in the UK--and an indefatigable advocate for her sons. It is crucial that every one of us remembers her contribution and the factors that foreshortened it.

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.