Monday, December 21, 2009

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.

1 comment:

  1. Today I have been reading lots about Patty Clark and the things she wrote. Especially speeches she would make for conferences shortly before she died.

    I do remember Storey. She died when she was 41, so 1963-1964? (I have trouble with dates during the first half of the year and working out birthdays).

    To think that Ben, the elder, is an adult now.

    Very glad that Munchausen by Proxy is no longer diagnosed under that name. We talk about 'factitious disorders' instead or 'induced illness'.