Thursday, April 22, 2010
Monday, April 5, 2010
Nutty Professors by Mikita Brottman
Copyright 2010 The Chronicle of Higher Education. Reprinted with permission.
Monday, December 21, 2009
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
- 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.
Monday, June 15, 2009
Please eavesdrop on this letter to an official at NAMI (National Association on Mental Illness.
I’ve been given a sabbatical leave to design and work towards implementation of a Neurodiversity Project at Washtenaw Community College in Ann Arbor, Michigan. My name is Jean Kearns Miller, and besides being a full-time, tenured English instructor at the College, I am proud publisher, editor, and contributing writer of the first and, for five years only book addressing autism spectrum disorders in women.*
My own official diagnoses are chronic, recurrent major depression and AD/HD-I (inattentive type) with Asperger “traits.” The students who have driven my project have had dxes all over the DSM-IV, and certainly they do want to educate classmates, faculty, and the staff with which they interact about how it is with them. “I’m one of you but guess what? I’m one of them too.” Or: “I’m one of them but guess whatP I’m one of you, too.”
But a critical issue for all of us is empowerment. And this can’t be had through people first language and the ideology generating it because the only thing you can get from it is “I’m one of you.” People first language means that as long as I work very hard to appear NT (neurotypical) and relegate my entire humanity to servicing neurotypicals, I will make the case that I’m just like you. Truth be told, I’m not like you. And the more your people first language (and ideology) constrains and marginalizes us, the more our circumstances will stagnate despite public impressions conjured by “awareness.”.
I recently joined NAMI and feel sure your motives and all the substantial, heartfelt efforts of you and NAMI do worlds of good. No question at all. Enormous thanks! But I want to give you this perspective to inform your future work and request a turn inward, to”people with,” who inadvertantly become the Elephant Man as ambassadors to the NT world.
Can you envision a more in-your-face approach that would educate the public not only about the what those with psychiatric diagnoses experience from their dx but also what they experience as a result of the attitudes and behavior of the very audience you hope so kindly to reach?
Wednesday, May 6, 2009
I was thinking the other day of times when I've felt most vulnerably, unhappily, intensely autistic. It's not that I lack autistic pride, but that I appreciate my prerogative to determine my 'outing,' and value people who sort of mind their own business and don't feel the need to scrutinize others' oddities. Live and let live is enduring wisdom. But I find when I relive experiences that it's not just trying to say something coherent to someone behind a counter, go nonverbal, melt down, and have people look at me weird that constitute truly hurtful experiences. That's just life for someone on the spectrum, upsetting, frustrating, regrettable, but in the end, inconsequential, especially if I make the flight, get the refund, whatever. But I can identify three experiences when I recognized in harrowing detail what I'm up against as someone on the spectrum.
I am attending the ASA (Autism Society of America) in Pittsburgh. I'm cash poor but I've been invited there by the publishing parent and email correspondent mother of an autistic daughter whose roommate I am. As I circulate the exhibit hall and sessions I know for the first time to what degree I constitute an it, someone reduced from whole person to problematic entity. Call it critical mass.* I make a valiant effort to humanize myself and my psyche and then it happens. My roomie networks with an autism publisher and she invites me to lunch with two of their reps. I find myself aroused by some topic of luncheon conversation and begin to verbally perseverate like mad on something that excites me no end, free associating into and around an elaborate and intricate line of reasoning and observation, when roomie looks at the other lunch participants and says, "See. She's just like my daughter!" Oh, dem pronouns! I am now the elephant man, third person singular, just like that!
I find out Tony Attwood is speaking in the metro area. I must give him a copy of WFAP? Perhaps he can do a wee expert blurb for a new edition. I have to teach in the morning but figure I can make ot from Ann Arbor to the Detroit 'burbs for lunch and Attwood's speech. Delayed just a little I arrive halfway through lunch to find no more food left. I paid for lunch! Those not on the spectrum will have little sense of how debilitating something like this is. On the other hand, whether I'm debilitated whereas an NT would not be, we've both been screwed. Either the caterer didn't cater enough food, or the conference attendees ahead of me got greedy, either way, I've stretched my executive function and budget to make it here and this is not meaningful to anyone but me. I arrived there wearing a makeshift sign saying "Ask me about my book." Had my sign been produced by a proper sign maker I expect I would have had credibility but makeshift means weird. NT culture is about the status quo and propriety, which provides income for sih=gn makers. EEEEuuuwwww! How not NT!! I tried networking those milling around but I was clearly off topic. The P&Ps (parents & professionals) in attendance lacked the capacity or interest (one and the same?) to imagine what women on the autism spectrum might possibly have to offer in their resolute pursuit of triumph over their children. I mailed the book to Atwood.
I am on my own turf, that is, until I come out. I and colleagues, Charles Avinger and Edie Croake, have just done a panel at 4 Cs ( the annual Conference on College Composition and Communication) titled "Normie Hegemony: Culture, Rhetoric, and True Life Adventures in the Land of the Neuro-typicals," my piece of which is "Normie Hegemony: Culture, Rhetoric, and True Life Adventures of Autism." The attendees are enthusiastic and I remain over the moon about the work of my disabled/disability studies CCCC colleagues in making the case for all of us. But feeling endangered in neurotypical hegemony swoops in nevertheless, and for me this happens at a session with an autism focus. In response to something said I, in customary excitable mode, say, "Autistics see NTs [neurotypicals] as grasping, needy." The audience laughs, heartily. Chagrined, I say, "Oh, no! I'm not joking!" And the audience, horribile dictu!, laughs. AGAIN.
It's that pronoun thing again. Reductio ad absurdum autisticam. Why do they willingly detach and discount?
Friday, May 1, 2009
Email subject: YOUR OPINION COUNTS THE MOST!
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Click HERE to sign up now, and thank you for your continued support!Sincerely,Autism Todaynews@autismtoday.com2016 Sherwood Dr #3Sherwood Park, ABT8A3X3
Once again I am appalled at the way so-called pro-autism organizations are decidedly not pro-autistic. You are defining this panel around cure ideology which most autistic adults find at the very least frightening.
I am also diagnosed ADHD and I have to tell you how different the ADHD community is from yours. Take a look at CHADD, the major national ADHD organization (http://www.chadd.org). It is entirely inclusive. Not only are adult ADDers considered essential to any advocacy groups but many, many of the theorists, researchers, and prominent clinicians are ADDers themselves: Ned Hallowell, John Ratay, Sari Solden, and Terry Matlin, among others. Stephen Shore and Liane Holliday Willey are perhaps the only two invited to the ball of the "autism Community." Perhaps if we all could become cognitive psychologists we would have the kind of critical mass to change the discourse on autism. In the meantime we look on in dismay and fear, for ourselves and the youngsters who are deemed unacceptable as-is.
The ADHD inclusivity keeps the cure hysteria to a minimum because people such as those I've mentioned are far from interested in being cured. In fact, the only place for cure rhetoric in ADHD is in quack internet ads. There is a growing pride in what ADDers are capable of even with severe problems like the statistically significant correlation between ADHD and marriage failure, incarceration, accidental death, and employment instability (e.g., likelihood of being fired), and particular torments suffered by ADDer youngsters: bullying, punishment for misbehavior, severe underachievement.
I'm not entirely sure what accounts for the disenfranchisement of autistic adults or the semantic lunacy of an "autism community" hospitable to everone EXCEPT autistics, but my best guess is an entrenched cultural belief that popularity, or perhaps, likability is what defines a whole person, Willie Loman in overdrive. If one cannot be likable, he or she is fatally flawed. Or maybe the culprit is stigma, pure and simple. I think there may be other issues in the personal narratives of parents that will never be resolved as long as they can hope for a cure.
In the meantime what does Autism Today have to offer me? How can I be sure your organization won't militate against my needs and deepest hopes? In terms of your list memberships and magazine subscriptions, what's in it for me?
Tuesday, March 24, 2009
I am a shiny beetle. They put me in museums stuck by pins. I strike terror in little kids’ hearts. Why? I am shiny. I am symmetrical. I have curved pincers—I guess that’s what they’re called—but Geezalmighty, I’ve got to have something to eat with. Will you allow me that? Or do I scare the Bejeezus out of you because you think I’ll bite? I’m not exactly one of those Amazonian ones that’s as big as a tortoise. And mostly I just eat garden stuff. But it’s true that once in a while, if I’m scared shitless, I can rear back and let out this gigantic hisssss! But who am I kidding? I weigh less than an ounce. You weigh over a hundred pounds. Step on me. Go on. Squish me like a bug. I’m dead. See. Guts all over the place—what little I have. And I scare you? Get real. But I do have a secret and I’m told secrets scare the piss out of you. It’s that you can’t see my face. I’m not even sure I have one the way you think of faces. My eyes are pin pricks and my mandibles are more like something out of John Deere than your mouth. I can’t grimace. Or grin. Or smirk or frown. Or express myself in any way you’d favor or even notice. You have no idea what I’m thinking and you can pretty well guess that I don’t take you seriously as a person. What squishes me could be a rock or a bag of groceries. What I perceive vaguely in the shadows could be a hand, a bird, or a scrap of paper. Life is pretty much reduced to physics for creatures like me and truth be told, you don’t and never will matter to me. If you threaten me I’ll hiss my genetically programmed, automatic, compulsory hiss and maybe I’ll scare you but it’s nothing personal. And maybe that’s what makes you crazy. Maybe if you figure you have a chance to charm, persuade, establish rapport—like you do with, say, a dog—I’ll make you feel good about yourself and your self-esteem won’t be lying in a heap. I don’t give you anything back for who you are, because I just don’t care. And that means I’d stomp on you if roles were reversed and maybe if you were a leaf I’d chomp into you without regard for your nice family, humanitarian impulses, and talent for…the flute. I am harmless and—HHHHSSSSSSS!—that’s what scares you to death. Am I right?
Wednesday, March 4, 2009
The Winter Breaks
Some of you may remember that I experienced three sudden hospitalizations a year ago. The first stretch, lasting nine days, occurred after I nearly died--twice. The second near death experience happened whilst flunking my stress test at the U. Go home? They had a room—good grief! They committed me. Just like that. There go the errands.
Then they sent me to the cath lab, where they feed a catheter from a groin artery all the way up and through and around the heart. Afterwards they assign a tech to stand by your gurney and press down with all their might on the “wound” (the hole they just bored) so you don’t lose blood. I was heart-cathed, MRI-ed, CT-scanned, X-rayed, heart-cathed again, during which I was outfitted with one arterial stent, at a cost of, yes, blood. (The gurney guy must not have had his heart in his job.) Two pints of O-neg transfused and the cardios figure maybe I’m cured.
The stent wasn’t, strictly speaking, warranted according to protocol since the artery, first measured 30% occluded, revised upward to 50% after another scan, eventually bumped up to 70% based on I don’t know what. But even 70% doesn’t meet the criteria, and the other arteries were clear. But stents are what cardios do. They did it—job well done. Clean bill of health. Pack up your rubberized bed socks, plastic basin, puke tray, and toiletries.
“Not so fast.” On come the electro-physiologists, cardiologists with an additional residency in the heart itself and its beatings. They observed that my heart was going whacka-whacka, accounting for all the instances of severe chest pain and shortness of breath. Down I went to get my heart ablated. Ablation is cautery of places in the heart muscle tissue that are wildly arrhythmic, ending the patient’s v-tach (ventricular tachycardia) and associated medical crises, thus freeing the patient. Libre comme les oiseaux! Not exactly. I emerged from surgery with a stiff, metallic, electronic playing card under my flesh between my tit and left shoulder. This is an ICD (implanted cardioverter defibrillator), a device that acts like a pacemaker (regulator) and if that doesn’t work you get zapped. Think about those medical TV shows where they bring in those paddles and say, “stand back!” ZAP! And the body bounces up off the bed. That's the power in my device, within my flesh.
The interesting thing about the ICD is that its bearers have something like a community thing going, thanks to the manufacturers who spring for these bonding events: meetings, parties, annual picnic. The Christmas party was a lavish spread. I digress.
I got the ICD, I’m told, because too much of my heart needed cauterizing. It made no sense with an ICD available.
So with stent, ICD, and an array of cardio meds with unpronounceable names, I exited the Umich Hilton after nine days, nine days of: watching endless judge shows, Bridezillas, reruns of Monk, and How It’s Made: curling pucks, cricket bats, inner spring mattresses, Hokey sweepers; roommates like the bellowing Alzhie, Seraphina, and the woman whose husband yelled his belligerence at every staffer crossing the room threshold; and bands of baby docs, nurses, more docs, more nurses, people with hospital ID and indefinite job description, all looking down upon me quizzically, then asking oh-so-delicately if they could “just…take…a…little…peak…at your, um, groin…area?” (I wonder has anyone said no. Or hell, no! I wonder whether someone could be in such denial about the way of hospitals and their identities as technical organisms to feel any delicacy at all. Many things are mystifying though.
Peace in the valley. Not quite. A week later, feeling clearly dreadful, I had no choice but to return. The diagnosis this time: acute renal failure. How do you like that? One of the unpronounceable meds was apparently shutting my kidneys down. But that was just overnight, sort of like a sleepover.
Things went more or less OK, if brisk walks around New Orleans were an inidcator, notwithstanding periodic angina, but I had my granny pills (sub-lingual nitro-glycerine) and I felt good. I started cardio rehab in mid-April, progressing well, but then I got zapped. One of the elists calls ICD folk joeys until they get “fibbed,” thus morphed into a kangaroo. Pleased to meet you. I had a no good, very bad v-tach episode, between the parking lot at work and my office. I was dying all along the way. Heart wild, brain flooded with explosive special effects. Then my trusty ICD rose to the occasion as I sat on a chair near the elevator I’d made it into, not dead. ZAP, and I was good to go, a full-fledged ‘roo.
This information was fed from my bedside monitor through the phone lines to the ICD clinic, whose staff were concerned. At the same time the angina remained and my QT interval was squeehunkie, so it was decided, while I was at the cardio rehab clinic getting ready to aerobicize in my cross trainers, shorts, and jogbra, to ambulance me back to the U for another stay to sort my treatment regimen out. This was the second to last week of the semester; I stayed six days, getting out just in time for finals week.
My intimate relationship with the cardiology establishment continues but I have most of my life back. I’m doing well. So this past week, winter break, I felt a comic flirtation with the memory of the previous winter break, the first hospitalization, that last week of February, 2008. Would I make it through without hospitalization? Of course. Silly. Could I be cursed? Doomed to a re-peat? Nah. Kind of whimsical to speculate, eh? But creepy anyhow. And creepy it was.
On Thursday afternoon of winter break we were visited by a stray cat I had come to call HLB, the horny little bastard. Our cat, Cookie, dumped on our property as an eight week old kitten in September, had been kept indoors since then so we had postponed spaying her. Once HLB got a whiff of Cookie in heat, he came around. A lot. Mewing quietly. Earnestly staring in through the window. Rolling around on the deck. He’d circle the house, yowling his unrequited angst. So on that Thursday, February 26, 2009, on one loop I went out and keeteekeeteed him and he came over. HLB is one big lug. At least 12 pounds, ergo fed, perhaps owned. But his coat was a bit matted and at his neck I could see vestiges of an embedded collar. Collar gone, neck shorn and possibly stitched. I leaned over and he seemed to welcome my chin rub till I got too close to the wound. Lightening fast, he bit and scratched me deep into my thumb. OK, so I wanted to see the neck scar plus I thought I could see if he had balls. My fault all around. One doc would call it a provoked attack. Jean, Cat Provocateur.
I went inside to wash my thumb well, slather it with antibiotic ointment, then bandage.But my thumb grew to the size of a very large fig. I’ve had plenty of bites and scratches, but this time they were so very painful I couldn’t sleep. NSAIDs didn’t help at all. In the morning the thumb was purple, red, green, with a bit of yellow and it continued to hurt like hell. I know what you were thinking. Why didn’t she go to the ER? Gosh. An Irish nurse’s daughter, it was chin up, others have it worse. Others go to the ER. I knew though that a trip to the vet to buy meds would resolve this stalemate. Vets and techs know their bites and scratches; they’d tell me what to do. And they said to go to the ER, right away! It’s happened. Winter break and I’m back at the U, by way of Saline Hospital ER. I was stablized at Saline and given the most wonderful pain killer, dilaudid
Though I never was lanced or punctured, except for the IV and the one puncture did it all. But I was violated. Hospitalization is a drag but becomes a locus of sheer desperation when one is violated. IVs violate but can be endured and forgotten as long as it doesn’t take three people to each give it a try: stab, (“let me try”)stab, “that vein’s real floppy”) stab. But the major abdominal surgery to give surgical birth to my son was violating. The stent was violating. The ICD implantation was violating. Nothing this time was apt to violate, except for one thing. A PA raised the option of rabies vaccine. And I, quite sure HLB was NOT rabid, agreed. I had a bad feeling from the start. Then I was told I’d be getting six injections, one the vaccine, the other five gamma globulin. It was these that were nothing but violent. Fortunately, two nurses did them in pairs: stab, stab, stab--arms, hips, and buttocks.
More shots, the ordinary kind, await, but the gamma glubulin shots have left me shaken, agitated, fearful, weepy, and enraged! I’m thinking of Mr.Belvedere, a home remodeler in Detroit who did his own TV comercials in a plodding, sadsack monotone: “We—do—good—work.” I remember reading that the lethargic Mr. Belvedere had sets of dishes in his basement and when he was filled with rage, would go down and smash plates, and cups, and saucers against the wall till his madness dissipated. Me? I’d prefer dilaudid. But it’s about realizing that my body is penetrable, rippable, puncturable, sliceable, could even be smashed to smithereens. And here I am expecting my molecules to cohere. As they do all the time. As they show little inclination not to. I think there’s a word in chemistry to explain the tendency of people not to come apart. But there you are, violated, your faith in your body’s integrity dashed for good. Like Warren Zevon’s hockey goon from Windsor would say, “I just want to hit somebody!”
Meanwhile, my injury had to be reported to Monroe County Animal Control, which requires us to trap HLB next time we see him so he can be hauled off and euthanized. Not so fast. I don’t want them to cut his head off and send it to Lansing. Especially since I tried to look at his nuts. I mean. Give him a break. He was only protecting himself. And for this he should lose his head, not to mention body integrity? Cookie will be spayed. Her heat is over. Peace in the valley. Till next break?