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February 29, 2012

Things Largely Ignored: A Story by Parent of Severely-Autistic Son

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A Creative Expression written by Kim Oakley, Mother of Severely-Autistic Son.  Let me encourage parents of autistic children and adults to WRITE. Just WRITE. It's cheap therapy.

                                                    Title: Things Largely Ignored

                                
Southeast Asia, 1969, air is wet, salty and peppered with blood. As Sky Raiders blast incoming Vietcong, it floats to the edge of his mind—and hovers like the Jolly Green he’s loaded into. Eyes guarded with gauze, he sees it now. The Spanish Colonial his father built after WWII. House is heavy, romantic, with golden yellows, rich reds, wicker chairs and shaker tables. Outside, vines bearing pendant bunches of fruit and a courtyard where he once played with his cousins. Cousins gone now: One taken by opium, one shot along the Mekong Delta, another crushed by an H-46 Sea Knight. Thump. Whoosh. “Going home man,” says a voice behind him. He begins to fade.  

Dirt labyrinths had been his home for two years. Tunnel Rats, they called them. Soldiers with iron nerves and sharp senses, summoned to flush out VC below the dank, dark soil of South Vietnam. Armed with only a flashlight and knife, he had served months on bended knees, sabotaging supply routes and slitting throats…until a booby trap blew him back to the jungle. Even with the bang, and smell of flesh, he had no desire to return.

There is a fire in his chest, needle in arm and bags of blood. Then a rush of feet—a makeshift hospital, morphine, bamboo walls; chatter that becomes a fog of obscenities, a room with mosquito netting, pain and more painkillers. Breathing turns audible. “Going home mate?” asks a soldier with a British accent.

Upon arrival, there is no public welcome. His father waves, his mother clicks a camera. “You’re home,” cries the mother, rubbing his hand. As a Catholic afterthought: “Thanks be to God!” His mother, who was never thin, has now a slender look about her, and her eyes, always young, have half moons stamped under them. It’s been three years since they’ve ridden together in the Pontiac. Raindrops Keep Fallin’ on My Head, by B.J. Thomas, plays on the radio. St. Jude, taped to the glove box, forever rides shotgun.

Above and beyond foreign subterranean. A world not quite real, but real enough that tunnels turn into highways that turn into wide lanes that become narrow and wind among hills, sloped pastures and tilled fields in geometric patterns, until the car coasts through towering redwoods and pulls into a pebbled driveway.
                                    
He’s wrecked all night. In his dreams, he moves under fields and villages, crawling over bodies, evading traps, pressing towards more space. He has become an animal of unknown origin. A screech owl awakens him. In the deep of evening, everything takes on a suspicious hue. He arises, stumbles into bathroom. For no reason apparent to anyone that would be watching, “Toilet paper! Canteen!” he shouts and startles a family of deer mice. 

Dusk comes and when it hits something like lighting stirs and explodes in his head and settles in his skin. He does not move from the cold floor or extinguish the cigarette burning on his chest. On a dresser, facing the bathroom, a clock his grandfather took during the taking of Berlin ticks softly. Eyelids flutter and close. He dreams of Cobras, Kraits, Punje Sticks and Bamboo vipers. “Wake up, darling,” whispers his mother. “I’ve made breakfast.”
                               
As he eats, blackberry jam and scrambled eggs fuse and become brains. “You look pale,” says the mother. From behind a newspaper, “See a doctor,” suggests the father. The doctor, a former Navy Corpsman, administered Atabrine to 1st Marine Regiment soldiers fighting in the bloody, mosquito-infested sands of Guadalcanal.

Doc prescribes Dexedrine and Librium, assuring antagonistic agents will suppress antagonizing thoughts. They do not. The man’s brain craves adrenaline: Motorcycles; Hookers; Jack Daniels; A bit of blow— Colombia’s best—found in Strip Clubs, here and there.

“Take up a hobby,” advises the doctor. The man buys a pool stick. At a local pool hall, he argues with a con artist and cracks the stick over the charlatan’s skull. “We don’t need no bad asses here,” says the bartender. Ten Tequila shots later, he swaps spit with a flower child he knew in high school, swipes her pack of Kool Menthols, and disappears into the night.
                                  
Winter tumbles into spring. The man meets a woman. “A stone fox,” his bar friends call her. They get married and it’s a big deal, because it’s a big year for wine, so the man’s family throws a big wedding and when the priest gets sauced and falls into the salad, this is largely ignored because the veal is baked in a creamy oregano sauce and the family sells Syrah to the town’s wealthiest men who rely on things largely ignored.
                                   
The man and wife move five miles from town, into a small home with a gabled roof and covered porch. The wife takes up painting. To everyone’s delight she is strikingly gifted. One evening, after a supper of Fondue and Salad, she paints a seaside jungle with colorful tangled roots of mangrove trees, solider crabs, dog headed snakes and mudskippers.  “C’mon try it,” the wife pleads, placing a paintbrush in the man’s hand. He kisses her forehead. Sets the brush down. Takes a gulp of Tang with Vodka, and turns on the TV. Blue eyes fixed on the black and white TV all night. As morning shadows get shorter, sunlight sends the man into a blind rage. With one punch, he shatters the window. Ambles into the kitchen, smashes the toaster.

When briefed of behavior, “He’s acting like a hoodlum,” remarks the father, and bites his lightly buttered toast. “Get him back working the vineyard.”

The man’s family had crafted wine for centuries. Like the Vietcong, the man has a strong attachment to his ancestral soil. Unlike the Vietcong, he lacks focus and self-discipline. Bill collectors and bankruptcy drive him deeper into despair, and he begins to shift. During a half-moon, a Sheriff coaxes him from a drainpipe near Tony’s Hardware store. He surfaces, ears pricked, scanning for trip wires. “C’mon son,” says the Deputy. “Let’s get you home.” The wife is not grateful when her husband returns. That night, she paints a sunken ship with parrot fish nibbling the red, blue and yellow coral growing on the wreck. Butterfly and angel fish swarm divers looking for treasure. The wife wants to help her man, but this is a time when problem behavior is largely ignored, so she continues to paint.
                                            
When the man discovers his father has cancer, he threatens a renowned doctor at a renowned hospital. A Korean security guard— who smells like American after shave— escorts him out. The man squints and starts to say something. Remembers Koreans were bad asses—fought with US troops and without remorse against the Vietcong. Didn’t believe you could re-educate communists. Korean soldiers delivered lethal kicks, like the one he once saw that practically booted Charlie’s head off. “You go now,” says the guard.
                                 
When his father expires, a long rope of anger entangles him, as if emotional ambush has waited for an opportune time to strike. Near unrecognizable at his father’s funeral, the man’s standard cut has grown into greasy brown curls that hang to his shoulders. Mustache and beard cover his once lean, clean freckled face. During the eulogy, he empties a bottle of Wild Turkey in one smooth swig, stands, and with expert marksmanship, hurls the bottle at the Virgin Mary.

In the shadow of his mother’s grief, the man hitches a ride to San Francisco, where he meets a hooker named Karla- though she doesn’t charge him. She buys him Sativa cigarettes laced with coke.  On cold nights, Karla and the man make hot, mad love, the kind you make when you’ve been tormented too long without relief. Love blooms. The man is high on hope.  Near dawn, Karla disappears in the back of a paddy wagon. For days, he hunts for her, without malice, searching alleys, corners and cars. All he finds are crumpled parking tickets, feral cats and a vodka drinking Vet who was shot climbing the Khe Sanh plateau.
                                  
When trees begin to drop leaves, the man drops into a bus and heads home. Head pressed into sticky vinyl, window quarter open, his temporal lobe twitches. He smells pollen and barbeque smoke. Somewhere over a stretch of road, he licks a pink dot. “A happy pill,” said a pink cheeked lady. He’s not happy. His mind begins to dance in unfamiliar moves.

Between bus transfers, the man trudges into a restroom. The floor is covered with brown-stained shirts. “As if toilet paper hadn’t been invented,” says a man holding a syringe. Above the sink, “Peace NOW!” carved into wall. He stares into a cracked mirror, flicks cigarette ashes into his mouth, rolling the taste along the inside of his cheeks, spits the ashy mud into his palms and smears it on his face. A sucking hiss of door and a pat on the shoulder awakens him. He walks.
                
Along oleander lined roads, a car loaded with Christian Youth spot his faithless face and twitching thumb. His mother finds him hunched in the fetal position on the Welcome Mat, fresh faced, fermenting in urine. “God in heaven,” she whispers. With trembling hands, the man sits up, lights a half-smoked joint.
                                     
The mother’s new boyfriend is an old gardener his father fired years ago for swiping hoses, hammers and rakes. Things a man with little shame and much want would steal. “He’s a changed man now,” claims the mother.  “He has his own business.” A small store that sells stolen things people sell him.

The boyfriend roams the home, acquainting himself with family heirlooms, as if he’s part of the history. When the mother isn’t watching, he sees the man watch him. He looks at the man with hate and fear, the same look the man saw in Nam, and will never forget.

In late autumn, the mother’s skin grows grey. Her lips turn blue. “Take these my darling,” says the boyfriend and hands her water and pills. As a daily ritual, the mother prays Psalm 64. As a weekly ritual, the boyfriend proposes and makes promises he can’t keep. On an early afternoon, when the boyfriend is at work, the man finds oval pills in a plastic bottle—pills that don’t match the mother’s prescription. He slams the bottle on a fiddle-back chair. Upstairs, he finds the mother in a deep sleep with a shallow pulse. He lays a cool towel on her head, elevates her legs. When she awakens, his heart aches with shame, fury and guilt and he knows what must be done.

The boyfriend does not return home that evening. Nor any other evening, and soon his store is up for sale and there’s a new owner—a French man-- who stocks cedar shelves with Belgium chocolates and Italian Sodas. The boyfriend’s disappearance is largely ignored. Rumor is he has split with a wealthier widow, in a town nobody can name.
                                 *****
Year after year, news of war arrives as bits of reality mixed with unreality. Every year, he wants to pick up the phone and call his wife, but picks up another drink instead. Inside the bar the man religiously sits, hunched over whiskey and watching TV. Above him hangs a prayer: “Dios me concede la serenidad para aceptar las cosas que no puedo cambiar, valor para alterar estas cosas, y sabiduria para discernir la diferencia.”

Winter after winter, the man hears his drinking comrades engage in spontaneous conversation inspired by rhythmic uprising in the news. Impending Economic Crash. Shortage of Gas. Worldwide Inflation. Peace talks in another nation. Politicians promise improvement. The Jesus Movement. Elvis Gets Divorce. End of Special Weapon Center Air Force. POWs Return. Agent Orange Burn. George Foreman vs. Muhammad Ali.  So Long Howdy Doody. Unemployment reaches 8.9%. Nixon Resigns. Night after night, Marvin Gaye’s “What’s Going On”, a frequent play on the jukebox.
                                     
Across the world, the war has taken a new twist. As Operation Frequent Wind blows hard and fast, the man rocks slowly in a wicker chair, slowly rising, as if tired of rising, and turns on new Heathkit TV. War has come back, no doubt, so he can crawl though this dark again. Stored memories activate. Pupils dilate. Breath backfires in his throat. Thump. Whoosh. Evacuation choppers. Hands wave frantically in the air. Fall of Saigon imminent. Americans flee in droves. US Helicopters depart.

A surge of tears flood his vacant, dry eyes. In a state of euphoria, “Ma!” he yells. The mother races into the room, stares at the TV with belated shock and joy. “Thanks be to God,” she says and crosses herself. There is nothing more to see. He makes frantic phone calls to the estranged wife. For the first time, his hands don’t twitch. The mother calls a priest. He calls out a prayer. Minutes later, “Thank you Father,” says the mother and she hangs up the phone.




Creative Expression/Honing Theory:





©2012 Kim Oakley. All rights reserved

February 26, 2012

DSM-5 Criteria for Autism: A Hot Mess

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Self-harm is very common in people with Autism Spectrum Disorders... between 20-30% of people with autism will self-harm in some way, but this is often seen as something different to when we hear about [a NON-AUTISTIC person] cutting or burning as a coping mechanism. The medical profession seems to make the same distinction, and usually refers to it as “self-injurious behaviour“ or SIB. 

"Self-injury is most often associated with severely-disabled autistic people, but some people with HFA/AS also self-injure.This is a complex phenomenon which may occur for very different reasons in different people. People with autism may have reasons for self-injury (such as sensory problems or a need to establish body boundaries) which are not shared by non-autistic  people who self-injure" Source: http://www.users.dircon.co.uk/~cns/cousins.html
Self-injurious behavior is a hallmark behavior of those on autism spectrum. SIB is not NON-SUICIDAL INJURY as the DSM-5 task forces seem to think it is, as if it’s a separate diagnosis from autism. This shows extreme ignorance on part of those working on DSM-5 Autistic Disorder criteria.
A 2007 study reported that self-injury at some point affected about 30% of children with ASD. Source: http://www.ncbi.nlm.nih.gov/pubmed/16581226



Why I’m Semi-OK, well, just Disgusted over Revisions to DSM-5 Autism Spectrum Disorder.

1.          Because it illuminates a pervasive intellectual failure of autism experts to understand hallmark traits of autism, such as episodic or repetitive self-injurious behaviors. Contrary to what a few research studies say, hundreds of research studies show self-injurious behavior is a hallmark feature of individuals on autism spectrum.


2.          Because it illuminates a pervasive professional failure of autism intelligence gathering. Researchers hungry for more power, prestige and personal gain are tired of researching severely-autistic individuals. Why? As one researcher said: they are “so much time, money and human effort.”  And their parents come back for “repeated evaluations.” Let me translate: “severely-autistic children are too much work.” “We don’t want anymore information about them.”


3.          Because while I see people like Catherine Lord and other autism “experts” justifiably TRYING to narrow the definition of autism to identify actual autism, they are still SEDUCED and confused by media obsessed with autistic savants (who make up 1% of spectrum), venture capitalists and absurd role models of autism who do NOT represent or want severely-autistics (especially severe autism and self-abuse in minority children) included in research or shown in media. Specifically, I’m talking about some in neurodiversity movements. SOME of these people hate severely-autistic children and frequently seek out and vilify their parents.



Alas, I’m not worried the DSM-5 will hurt my severely-autistic son. He’s been evaluated more times than the Middle East. He’s had more tests than a Hypochondriac Billionaire. He meets the criteria for severe autism (level 3) diagnosis in the DSM-5 proposed revision. But, I fear the DSM-5 will hurt many families with severely-autistics in the future, if the definition doesn’t further ELABORATE on what severe autism level 3 involves.

I suppose I get upset with people like Catherine Lord and other autism experts because they remind me of my experiences with professionals who have remained, for decades, so disconnected from the realities of living with severe autism. And say hurtful things like “so much time, so much human effort” about handling severely-autistic children. The casual indifference and ignorance is too much to bear. It infuriates me. And pierces my heart. I don’t like to cry. I’m afraid I’ll never stop. I’d rather be angry.

It would be great to crash the autism expert’s seminars, symposiums, workshops and conferences, and bring in my son during a self-abusive meltdown. Let’s see what these experts are really made of. It would be a fabulous Hidden Camera Moment.

Allow me to analyze myself. I am no doubt traumatized, and driven to hyper-vigilance, by years of having to advocate like an animal in the face of pervasive apathy, disregard and neglect towards my son’s autism and severe self-injurious behaviors.  

As a result, the nanosecond I detect apathy and disregard, I want to expose and confront the people involved. To me, there is no greater degree of human evil than that of those in high places who pretend they care about elderly, poor and disabled, but show repeated signs and symptoms they are NOT HELPING individuals or families.

In summary, I agree with the ATTEMPTS of DSM-5 to narrowing definition of autism. I don’t think a child with Rett’s, Landau Kleffner or other genetically linked factors, such as Fragile-X, should be considered ACTUAL AUTISM, though no doubt, they too need help. At the same time, I’m disgusted experts STILL don’t understand how to ANALYZE autism. It’s not rocket science. You simply ASK the parents, have you ruled out other factors? This is SELDOM, if ever asked.

As I’ve repeatedly suggested, our son’s case is a great case for autism research. We’ve already put in the “time, money and human effort” for the researchers! We’ve already had a plethora of known disorders commonly misdiagnosed as autism RULED OUT.

He’s actual autism. Maybe that’s why media-pleasing researchers don’t want to know us. They may have to then acknowledge that autistics with severe behaviors and intellectual challenges do exist.

That may upset Neurodiversity zealots. Apparently, some, not all, in the neurodiversity movement are obsessed with redefining autism. They pretend they care about severely-autistic children, but like the caste system, they want these “others” out. They want moms like me to “stop showing videos of severe autism on YouTube.”

Not until I see the zealots of Neurodiversity stand up for severe autism and cease attacking parents of severely autistic children, will I believe their melodious mission statements and pious petitions. Not until I see autism experts present with signs and symptoms of autism expertise will I believe their titillating titles. Meanwhile, I don’t put my hopes in autism experts. I put my hope in God and my own expertise in handling my own son. I rely on the doctors involved in my son’s case. Doctors I can trust and who have proven they care.

Kim Oakley

February 25, 2012

Why Neuropsychiatry for Autism?

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“Epilepsy is more common in individuals with autism than in the general population,” says a 2009 Institute of Clinical Sciences and Institute of Neuroscience and Physiology report...“study of young adults with autism showed high rates of epilepsy… A diagnosis of AUTISM in children with intractable epilepsy remained after surgical intervention.”

“One must be aware that AD, Asperger syndrome and autistic-like conditions are behaviorally defined diagnoses, in contrast to…eg infantile spasms, Landau Kleffner syndrome or the syndrome of continuous spike-and-wave during sleep. These diagnoses are based on specific EEG findings together with clinical symptoms and signs and affect both previously healthy children and children with neurodevelopmental disorders. Acquired functional deficits, including cognitive and/or language regression, seen in these children are potentially reversible [cured] and treatable as they are presumed to be caused by epileptiform activity.”

“In a retrospective follow-up study on a clinical series of
130 individuals 18-35 years old diagnosed with autism in childhood and without a known associated medical condition epilepsy was found in 25% (Hara 2007).”

Parents of autistic children and adults spend many years and hundreds of hours floating between primary care physicians, gastroenterologists, geneticists, psychiatrists and neurologists. I’m finally down to three. It would be great to narrow the medical maze to TWO doctors. This may sound like it’s no big deal, but it is when you spend half your life traveling for an hour in a car, sitting for another hour in an office and waiting 45 minutes in an exam room with a severely- autistic son. By the end, I often feel like making myself an appointment with several psychiatrists. Or at least picking up some dark chocolate and a bottle of Pinot Noir on the way home.

Study by Olsson et al. (1988), three quarters of all children with autism and epilepsy had partial seizures only or in combination with other seizure types, as did three quarters of adults with active epilepsy”

Finally, the report noted it hopes information provided will “increase awareness of individuals with both epilepsy and autism, so that optimal support and interventions can be provided and planned for through the collaboration between psychiatry and neurology”.

So, we must ask: Why are autistics with epilepsy and behavioral issues constantly bounced back and forth between psychiatry and neurology? Interestingly, there is growing support for the rapprochement of neurology and psychiatry. Neuropsychiatry becoming a specific branch of medicine that could better medically manage moderate to severely autistic patients.


February 23, 2012

Self-Injurious Behavior in Autism Spectrum Disorder

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Self-injurious behavior is a hallmark feature of autism. Yet, unless it’s severe it’s often undiagnosed. Much like autism spectrum, there is a self-injurious behavior spectrum: Mild to Severe.

We find parents reporting self-injury among children with Aspergers:

  1. Jan 23, 2011 ... Moms and dads have a natural tendency to run to their Aspergers ... in a tantrum
    that cause them self-harm (e.g., banging head, hitting self, etc.)
    www.myaspergerschild.com/.../aspergers-temper-tantrums-15-tips-for.html
  2. Dec 20, 2010 ... Children and teens with Aspergers may engage in self-harming behaviors (also
    called ... What can be done to prevent self-injurious behavior?
    www.myaspergerschild.com/2010/12/aspergers-and-self-injury.html
  3. Nov 10, 2011 ... Individuals who engaged in self-injurious behaviors as children may return to
    these as adults during times of stress, illness or change.
    www.autism.org.uk/living-with.../self-injurious-behaviour.aspx  
We find Academy of Child and Adolescent Psychiatry website reporting self-injury among autism:

  1. Children diagnosed with autism tend to process and respond to information in the environment in unique ways. In some cases, parents are frightened because they exhibit aggressive and/or self-injurious behaviors which are difficult to manage…” http://www.aacap.org/cs/autism_resource_center/faqs_on_autism

We find Autism Society reporting: “Early Indicators: High Functioning Autism and Aspergers Syndrome… The disorder makes it hard to communicate and relate to the social world. In some cases, aggressive and/or SELF-INJURIOUS BEHAVIOR may be present (Autism Society of Delaware, 2005); Source: http://www.disabled-world.com/artman/publish/article_2255.shtml.



Because Aspergers individuals don’t possess a clinically significant cognitive delay and are of average or above average intellect, self-injurious behaviors often go unnoticed.
Self-injurious behaviors (ie… scratching arms, pulling hair, slapping or punching face) may occur in isolation. Or occur covertly, often triggered by high stress, bullying, sudden changes or being trapped in highly-illogical situations triggering extreme frustration.
For example, an Asperger’s man sitting in a meeting listening to something he can’t process, or finds inanely nonsensical, may hide arms under table and pinch himself. Or, later go into bathroom and yank hair. You’d never know it. Or a high-functioning autistic woman who is hyper-focusing on reading and constantly interrupted may, when the person interrupting leaves, slam fists into face. Thus, behavior may go unnoticed. In contrast, a severely-autistic individual—with more severe sensory and processing issues, let’s loose in any situation, by no fault of their own. Thus, it’s noticed.
SIB seen in higher functioning autistics differs in intensity, frequency and duration. For example, a severely-autistic child may hit head daily for several minutes. In contrast, an Asperger child may slap head five times once a week. In both cases, it’s self-injurious behavior.
Though there are differences between HF autism and LF (low functioning) autism, there seems a major connection with tendency to engage in self-injury. Hence, self-injurious behavior is a core feature of actual autism.

Here it is again mentioned: “Many symptoms that occur on the autism spectrum…severe anxiety and difficulty in communication…result in significant reduction of quality of life. More URGENTLY, certain symptoms such as self-injurious behavior represent an immediate danger of self harm.” http://www.aspergerssyndrome.org/PDF/AutismSubtypes.pdf

Clearly, self-injurious behavior exists across autism spectrum and as such, can no longer be ignored by researchers as being something else.

Of great interest is self-injurious behaviors among autistics DIFFER differ from other diagnostic groups.

Severely-autistic individuals tend to target above neck (head/face hitting, face slapping, face scratching and pulling hair). Higher functioning individuals also target head, as well as arms. Interesting, HEAD is major target, given autistic individuals often experience sensory overload and processing challenges rooted within brain, as if head hitting is natural reaction to incoming assaults and internal chaos.

Let’s compare self-injury seen in GENETIC conditions with self-injury seen in actual autism.  

Self-Injury seen in Cornelia de Lange syndrome presents as biting fingers and putting fingers in mouth.

Individuals with Rett Syndrome present with: hand wringing, hand mouthing and digging fingernails into opposite hand.

Individuals with Prader-Willi Syndrome present with obsessive skin-picking causing tissue damage.
Individuals with Lesch-Nyan present with eye-poking, tongue and cheek biting, head banging, nose gouging.   

Individuals with Fragile-X/Angelman’s syndrome may display SIB, but these are not true autism. These too are genetic conditions identified by distinctive characteristics and chromosomal abnormalities, thus separating them from actual autism.

Some researchers think autism is genetic. But there’s no concrete evidence. Until there is, we should contain what we know to be factual and logical about self-injurious behaviors among autistics and not swirl different diagnostic groups into autism behavioral research.

It would make sense to study together high and low functioning autistics who exhibit self-injurious behaviors to identify common underlying mechanisms fueling or triggering their SIB.
 
© Kim Oakley February 23, 2012
selbst verletzungen bei autismus

February 19, 2012

Autistics with Severe Behaviors Exist

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Why is “Autism Expert” Catherine Lord Obsessed with Ignoring self-injurious behaviors in the Severely-Autistic Population?  

We see why inside a 2010 Dissertation titled, Defining and Quantifying Severity of Impairment in Autism Spectrum Disorders Across the Lifespan, written by Katherine Oberle Gotham, who lists Catherine Lord as her “advisor.”  On page 6 of paper, Gotham writes, “One reason that so much time, money and human effort continues to be expended toward identifying the cause of ASD is that it is very difficult to eradicate social and repetitive behavior symptoms and virtually impossible to CURE these disorders.”

Somewhere along the autism research road Catherine Lord discovered that researching behavioral problems in autism required more than a short-term study.

Something had to be revised. So much time…so many time sensitive projects… So much money…severe subjects so costly……So much human effort…”impossible to cure”.

Catherine Lord should know self-injurious behavior (SIB) isn’t an anomaly among severely-autistics. If she doesn’t know, then I submit she is not qualified to be an autism SPECTRUM expert. Yet, I DO think she knows SIB exists. Extensive RESEARCH shows SIB exists among Low to Moderate and High Functioning and even Asperger individuals.

Special education teachers earn credentials in Mild/Moderate or Moderate/Severe areas. Shouldn’t autism spectrum disorder be divided in same manner? Does DSM-5 intend to ignore SIB in autism spectrum?

Is Catherine Lord, an alleged autism “expert” working on DSM-5, willfully ignoring the reality of behaviors to ease the burden of autism research? Does she view autistics with serious behavioral issues as an expenditure of too much time, money and effort?

Current autism research tends to exclude, for matters of convenience of the researchers involved, use of severely-autistic study participants…,” wrote Harold L Doherty, father of a severely-autistic son and author ofAutism Reality NB

What would be less burdensome for Lord to study in autism subjects?

On page 107 of Gotham’s Lord inspired paper it us gives a hint, “…URGENT need to study TREATMENT for DEPRESSION in ASD.” WHY is researching depression in autism suddenly “URGENT?” But not repetitive behaviors like slamming your head into a wall, bolting into street or jumping off tables?

Of interest: Gotham’s husband, Stephen Brunswasser, involved in “Launching a New Depression Center Program, Campus Mind Works” at the University of Michigan where Gotham and Lord worked together. Source: http://www.depressioncenter.org/news/081210-campusmind.asp
Of interest: Gotham says in paper: “This research supported by grants from….AUTISM SPEAKS [principal investigator Catherine Lord] and BLUE CROSS BLUE SHIELD of Michigan.

On page 56, Gotham says, “TEAACH methods” showed “greater increase in social adaptive behavior.” “NO effects were found for hours of PARENT training in ABA.” (Blue Cross fights against COVERING ABA)

SEE: Blue Cross Blue Shield Ends Coverage for Medically Necessary Treatment for
Autism.
See, “Blue Cross change concerns patient advocates for autistic children,” by Christopher Snowbeck, published Dec. 20, 2011 in the Pioneer Press.

Analyzing Gotham’s paper, her understanding of autistic behavior appears limited to eye squinting, hand flapping, echolalia and collecting ticket stubs. Gotham fails to cite or mention self-injurious behavior in autism. She does, however, cite numerous of Catherine Lord’s vague studies. What is motive for ignoring challenging behaviors in autism? Hasn't Ms. Lord also invented an "instrument" in which focused on diagnosing autism in babies? Is this involved in her DSM-5 criteria?

Read again Gotham’s writing because it’s illuminating: “One reason so much time, money and human effort continues to be expended toward identifying the cause of ASD is that it is very difficult to eradicate social and repetitive behavior symptoms and virtually impossible to CURE these disorders.”

What a bias attitude to bring into autism research.

And Gotham’s Catherine Lord inspired work continues…

On page 14, “True normalization of severity of autism would require a representative population, but to date, population studies have been too SMALL…” Now they want them to disappear.

On page 15, “approach to developing a severity metric…on basis of theoretically driven expectations.”

On Page 26, “tendency for children of higher severity to have more clinical re-evaluations than those with less pronounced features of ASD.” …“calibrated severity is based on relatively BRIEF, OFFICE-based observation with a clinician...”  

In Chapter 3 we find autistic children assigned “class membership. And minorities are more severe and get de-labeled.

On page 54, “MINORITY race status increased the odds of being in worsening class by 113%.” Three children in this class “ultimately” received a NON autistic diagnosis. 

On page 55, “Losses in language skills were most prevalent in IMPROVING class.”  Gotham speculates these autistics are developing at faster rates.”

On page 58, “Majority of participants in Persistent High and Moderate Classes had FINAL diagnoses of autism.” 
”Most children in Worsening and Improving Class had PDD-NOS diagnosis.”

On page 59, “we expect caregivers to self-refer for REPEATED evaluations more OFTEN in the case of persistently severe autism characteristics.” Heaven Forbid parents or advocates working on behalf of severely-autistic want another evaluation. So much time...So much human effort.

On page 72, “Continued research on depression in ASD is crucial.” (Especially when your husband is going to work in a Depression Center Program)

On page 73, “…individuals with mild autism [and higher verbal skills] seem to be more affected by depression. That’s the new area of concern now…depression. And look what Gotham writes next:

On page 76, “Assessment of depression criteria in general population relies on communication skills often ABSENT OR ABNORMAL in ASD.” 

On page 78, “it’s ironic that by INCLUDING individuals with ASD in the COMMUNITY…we may be increasing their risk for depressive symptoms.” I disagree. Autistics isolated from community, drugged, shackled and hidden are more likely depressed.

I’m sure DR. Lord (who is a Ph.D, not MD) has invested ample time and effort into autism research. She hasn’t invested her money to my knowledge, though, as for years, she’s been living off Other people's money (OPM) ie.. government GRANTS, private foundations, companies, royalties, etc… which I suppose is norm for researchers building a highway to the corporate corners of autism research. http://chargesyndrome.org/documents/MartinCV.pdf.



Catherine Lord and others like her who work in autism research, likely start out with frenetic enthusiasm for helping autistic individuals. At some point, they meet burnout and lose interest. They became addicted to living off grants. A psychological shift occurs. A fundamental loss of interest settles in. They, like Gotham alludes, long for easier autism subjects.

Awhile back, Venture Capitalists scooped Catherine Lord. A NEW autism treatment and research facility to fuel 100 more years of autism research that honors tradition of “further studies needed.”

I wish I could meet with new autism researchers and tell them not to start off so fast. Not to get too comfortable in a classroom. Or obtain too much knowledge from instructors. To apply for autism grants to effect change. Hold ground. Break new ground. Don’t depend on work of past scholars. Observe actual needs of autistic individuals. Don’t be afraid to tackle serious behavioral issues. Don't ever become compromised.

Autistic individuals with difficult behaviors shouldn’t be ignored. They will not be ignored. There is hope. There are things we can do to improve their lives and the lives of those who live, work and care for them.

For researchers reading this who feel offended, or now hate my guts, get over it. If none of this applies to you, then don't worry about it. Man up. Woman up or whatever you need to do to be on the up. I'm so sick of whiners in professional places who can't handle criticism. This isn't a tea party. You aren't in charge of bunch of plastic cups, plates and finger sandwhiches. You are getting millions of dollars to research a disorder that is causing a lot of pain and suffering in millions of people. And you're not doing a very good job managing the autism research funds. To this date, autism research remains a big black hole of ambiguity and staged studies, where priniciapl investigators seldom check the work being funded and then, at the last second, everyone runs around scrambling to put data together, so it appears as if someone actually gave a damn.


Sources:

1. About 10% to
15% of individuals with ASD engage in some form of self-injurious behavior (SIB) ...

3..  Gotham dedicates 2010 PhD Dissertation to family: Stephen Brunswasser and Mary Gotham. Also thanks Andrew Pickles and Somer Bishop, Albert Cain, Israel Liberzon and Mohammad Ghaziuddin and her “advisor” Catherine Lord for which she has immense gratitude for Lord’s mentorship and collaboration.
deepblue.lib.umich.edu/bitstream/2027.42/77759/1/kog_1.pdf

4.  Conflict of interest for Catherine Lord: I receive royalties from a publisher for the
instrument on ...... behaviors in autism using the Autism Diagnostic Interview-R.
deepblue.lib.umich.edu/bitstream/2027.42/77983/1/142_ftp.pdf

5. Catherine Lord is to lead a New Comprehensive Autism Treatment Institute, in New York, scheduled to open in 2012. People involved in funding institute: “Laura Slatkin and Ilene Lainer are teaming up with hedge fund giant Jim ... The
women recruited leading autism clinitian Dr. Catherine Lord ...” finance.fortune.cnn.com/2011/06/.../autisms-new-venture-capitalists
6. 2009. National Institutes of Health (NIH) awarded more than 50 autism research grants, totaling more than $65 million, supported with American Recovery and Reinvestment Act (Recovery Act) funds. WHO received some of the money? Catherine Lord, Ph.D., of the University of Michigan, and Somer Bishop, Ph.D., of the Children's Hospital in Cincinnati. FOR WHAT? To “study” how to CHANGE the Autism Diagnostic Interview--into a brief parent interview that can be done over the telephone. Lord and Bishop said it could reduce research screening costs and help quickly identify potential participants for ASD studies. So much time…so much human effort.
Nov 1, 2007 ... Laura Schreibman, PhD, is Director of the Autism Program and Distinguished ...
behaviors such as self-injury or self-stimulatory behavior.
www.medscape.com/viewarticle/554574
2. Nov 4, 2011 ... Dr. Rimland was also one of the creators of the controversial DAN! ... behavior
problems (obsessive-compulsive, self-injury, aggression, etc.).

autism.about.com/od/treatmentoptions/a/DANQandA.htm -

February 18, 2012

Autism Treatments That Help

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Things That Help My Severely-Autistic Son and May Help Others:

Challenge: Disruptive vocalizations. I’m not talking about baseline vocalizations. I’m referring to extremely loud, repetitive screaming.

1st Line Treatment:   L-Tyrosine 500 mg-1000mg. Given either @ 7 AM before breakfast or PRN in afternoon before lunch. Not given @ night. Often reduces incessant vocalizations. I thought L-Tyrosine could help after analyzing research on disruptive vocalizations in elderly patients in nursing homes (L-tyrosine is a natural way to elevate dopamine).

2nd Line Treatment: Green Tea Powder mixed in oatmeal or yogurt. Or strong lukewarm Green tea with a little sugar.

Challenge: Self-Injurious Behaviors (SIB) (punching head, temples and chin extremely hard with fists)

Current Maintenance Treatment: Prescribed NICOTINE Transdermal Patch 7mg applied to dry skin @ 7am, removed at 5pm.

Challenge: Constipation (one of many triggers to SIB) 

1st line Treatment: Minced, Pureed Diet. Power Purees (lots of organic berries, yogurt, flaxseed, apple juice, etc…)  
2nd line Treatment: Suppository
3rd line Treatment: Lactalose PO (by mouth) mixed with juice or Ensure with Fiber

Challenge: Preventing Colds, Flu, and other Illness Known to Increase his Self-injurious Behaviors

Preventative Care#1:  2-3 Kyolic #105 Garlic Capsules with lunch.

Preventative Care #2: Warm bath 2 xs daily with Epsom Salt and aromatherapy (lavender and tea tree oil). If needed, turn on sink faucet until bathroom is saturated with steamy mist, to loosen mucus.

1st line treatment: Drops of Echinacea/Goldenseal tincture by mouth.

2nd line treatment: See Primary Care Doc to rule out sinus or ear infection.

Challenge:   Up All Night-Insomnia: Underlying medical issues ruled out

1st line treatment: Massage Therapy

2nd line treatment: Weighted Blankets to help with restless legs, sensory overload or general anxiety. Wrap up to neck only. Monitor closely. Move blankets down to shoulders when asleep.

3rd line treatment: Leave Headphones ON to block out noises, keep room EXTRA quiet, lights down, until falls asleep.

Challenge: Avoiding Hospital-Acquired Infection/Illness

1st line treatment: Second he arrives home, he’s in the bath. Hair washed. Body scrubbed. A little Tea Tree Oil Conditioner left in hair. Don’t want to carry home what’s floating around hospital settings. Teeth brushed with baking soda and hydrogen peroxide. Ears swabbed with Tea Tree Oil pads. Shoes cleaned with Lysol wipes.

Challenge: Avoiding Day Program-Acquired Infection/Illness

Preventative Care: Take him straight from car to bathtub. Hair and body washed. Ears cleaned.

Challenge: Increased Seizure Activity

Preventative Care: Frequently feed foods high in Omegas (sardines, flaxseed, and salmon).

1st line treatment: Prescribed 0.5 mg clonazepam, as prescribed, as needed.

Some Helpful Antidotes I’ve Used for My Autistic Son:

After my son was given too many “benzodiazepines” (repeated doses of ativan) inside a hospital, I bought the herb Bacopa Monnieri. I gave it as directed, it reversed the benzo fog. In case a health professional plagued with compulsive doubting is twisting in a chair and getting smug and uptight reading this….thinking, Gee, she’s just a parent of an autistic child, who does she think she is… what rubbish…here’s evidence. Notice research is done by National Institute of Health.
Jan 13, 2008 : As Benzodiazepines are known to produce amnesia by
involvement of the GABAergic system, we examined Bacopa monniera, ...
The degree of reversal by Bacopa was significant www.ncbi.nlm.nih.gov/pubmed/18193203
Antidote I’ve used at home to help my son recover after given too much Tylenol at hospital: N-acetylcysteine, as directed.Antidote to acetaminophen overdose is N-acetylcysteine (NAC)….www.emedicinehealth.com/acetaminophen_tylenol.../article_em.htm
N-acetyl cysteine is used to
counteract acetaminophen (Tylenol) and carbon monoxide poisoning www.webmd.com/.../ingredientmono-1018-N-ACETYL%20CYSTEINE.aspx
Legal disclaimer: Please consult with a physician or other (love this next part, as if we're morons) "qualified"
healthcare provider before trying any new or suggested treatment. What is an unqualified healthcare provider? Your grandmother? Nothing here is intended to diagnose, treat, cure or prevent anything, though some information found here may cure or prevent autism ignorance.
Kim Oakley