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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

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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) which are not shared by non-autistic  people who self-injure." Source: http://www.users.dircon.co.uk/~cns/cousins.html
Self-injurious behavior (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 affects about 30% of children with ASD. Source: http://www.ncbi.nlm.nih.gov/pubmed/16581226



Why I’m 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 stopped 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.” "They don't generate quick results." 


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 by 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 people like Catherine Lord and other so-called autism experts remind me of experiences with professionals who have remained, for decades, so disconnected from the realities of living with severe autism. And say callous things like “so much time, so much human effort” about handling severely-autistic children. This casual indifference and ignorance infuriates me. 

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. Wouldn't that be a fabulous Hidden Camera Moment? Talk about putting people to the test. 

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 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

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 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

February 12, 2012

Non-Verbal Autism and Self-Injurious Episodes

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                 10 Things to Consider When Non-Verbal Autistics Have Sudden Self-Injurious Episodes: 


1.              Environment. Auditory: Are loud noises (car alarms, dogs barking, others talking too loud, music or TV blasting) triggering behavior? Olfactory: Sudden onset of strong smells, such as fresh paint, perfume, popcorn in microwave? Tactile: Sits on chair with book on it. Visual: Sunlight in eyes. Scary show on TV. Frightening picture on wall? Scan area for everything possible that could startle or cause fear or discomfort. Re-direct autistic person to safe, quiet area, if needed.  


2.              Clothing. Is something like underwear or diaper pinching? Pants too tight? Sleeves wet? Clothing bunched? Itchy? Sweater tag scraping neck? Check for insects, as in Ants in pants (yes, this happened once on a field trip to park). Overdressed? Underdressed? Too hot? Too cold?

3.              Shoes. Rocks, pebbles or stickers in shoe. Shoes or socks too tight. Or wet. Or have holes. Also check toe-nails. Long nails can cut other toes. Check for blisters.

4.              Hunger or Thirst. ESPECIALLY if autistic person is on MEDICATIONS. Drug-induced hypoglycemia presents with low blood sugar and cause automatic behaviors, ataxia, anxiety, dilated pupils, confusion, myoclonus, tingly skin, shakiness, sweating and heart palpitations. Such symptoms lower self-injurious threshold in a behaviorally-fragile autistic person (BFAP). Check for de-hydration. Non-verbal autistics often can’t tell you they’re thirsty. Offer frequent sips of water or juice. Keep hydrated. Know when they last ate. Offer food.

5.              Sleep deprivation. Acute or chronic. If you suspect insomnia or other sleep issues, which are common among autistics, look for appetite changes, constant yawning, changes in vision (bumping into things), off-baseline [not normal for person] distractibility, bloodshot eyes, extreme agitation, elevated histamine levels in blood (request blood test if suspected as this can also be sign of gut bacteria), hand tremors, sensitivity to cold and/or unusual re-actions to noise.  

6.              Underlying, undetected medical issues: Infection. Allergies. Impaction. Constipation. Bladder infection. Sore throat. Ear infection. Adverse reactions to medications. Cavities (one of the hardest things to detect, since many severely- autistic persons with behavioral issues can’t tolerate dentist looking inside mouth, and so have to be put under general anesthesia just to have a check up).

7.              Acute Injury. Stubbed toe. Scraped knee. Bumped head. Treat (apply ice packs or Bactine spray for pain relief, as needed). Remember pain caused BY self-injury triggers MORE self-injury. Do all you can to STOP the pain.

8.              Defensive Mechanism. Is autistic person being rushed, let’s say, to go to bus? Rushed to get into car? Rushed to change classrooms? Forced to board airplane? All these can be triggers to self-injury, as pressure and stress of situation becomes overwhelming. Slow down, if possible. Obviously, in an emergency, if you need to vacate a building, you have to move quickly, but if you can, prepare autistic person prone to self-injury by moving slowly and calmly from place to place. Provide extra time and space to process things.

9.              Boredom. Sitting in a classroom staring at wall for hours could be a trigger. Staying in one place too long could trigger self-abuse. Some autistics get “stuck.” They need re-direction. They need you to help them get unstuck. Introduce new assistive technology, toys and settings, as tolerated. Read to them. Try hand over hand assistance and prompting.


10.       Subnutrition. Chronic exposure to inadequate nutrition. State and private-run facilities and other programs serving autistic populations offer junk food because it’s cheap. Common foods served include crackers, bread, chips, cake, canned vegetables, French fries, hot dogs, pizza, puddings and TV dinners. Subnutrition can also occur when autistics with nutrient absorption issues don’t receive MINCE or PUREE foods to enhance digestion. Even great food can’t be digested if it’s being swallowed whole, which some autistics tend to do. In cases where autistic won’t chew slowly, ask doctor to order minced or pureed diet. Subnutrition affects mood and lowers self-injurious threshold. Every bite counts. It’s essential to evaluate and improve diet and nutritional status of self-injurious autistics.

Kim Oakley February/2012

February 5, 2012

Looking Back at 1982 AMA Definition of Autism

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Looking Back at 1982 AMA definition of Autism.

A 1982 American Medical Association (AMA), Family Medical Guide, still sits on my bookshelf.

In describing autism it says, “Autism is a child’s inability, from birth—or a loss of ability within the first 30 months (not 30 years)—to develop normal relationships with anybody, even parents. What causes the disorder is not known (experts still don’t know).

As a baby the autistic child will have difficulty with feeding and toilet training…he or she will not give, or cease to give smiling recognition to parent’s face. It will become increasingly apparent child lives in a world of his or her own…Speech, facial expressions, or any other forms of communication are absent or unintelligible. In some cases a few words are spoken, but are repeated (echolalia)…An autistic child makes no distinction among people, other living things, and inanimate objects, and treats them all in same way (I would argue that’s more a trait of moderate to severe autism).

He or she cannot evaluate situations, and so reacts inappropriately to them (slaps, hits self)…child may become fiercely agitated (screams) if furniture is rearranged…or he or she is taken into new surroundings…same child may also run into busy street without any fear…By not communicating autistic child remains isolated…(assistive technologies now help many non-verbal autistics)…autistic children often behave unpredictably…they may be violent (or self-abusive) one moment, and then sit completely still, in some strange position (like the pretzel position my son goes into)…for hours on end.

Autistic children also adopt strange postures and mannerisms (like flapping fingers) that can unsettle those around them. And although the child may be intelligent (they could be memorizing and mapping everything around them for all we know) he or she may give impression of being sub-intelligent…”

Intelligence is such an elusive concept. As we have learned over the years, there are different types of intelligence, some that can’t be measured. More and more cases of severe autism spontaneously show hidden intelligence.

I like the 1982 description of autism. Perhaps it’s because definitions like this were scrolled before mainstream media became obsessed with the Rain Man. Now don’t get offended. I love the character in the movie, —especially when he hits himself in the head at the airport. Would the DSM-5 task force see that as Non-Suicidal Self-Injury in an autistic person? I wonder.

February 4, 2012

Autism Experts Should Consider the Rule Out Factor

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Experts know little about autism because there are no general autism experts. There are only experts in specific levels of autism.


I learned years ago not to rely on autism experts. Most seemed stuck in an ivory tower. Others I had to rely on seemed forever in a hurry to get us out the door.

A few years ago, several gastroenterologists failed to detect H-pylori, an underlying condition that was, for several months, tormenting my autistic non-verbal son. I finally asked for the test, after reseraching causes of stomach pain. I didn't even know there was such a test! The test was positive. He was prescribed meds. He got better. Of course, in severe autism there are multiple antecedents that trigger self-injury, but at least H-pylori wasn't one of them after treatment.

Another example, numerous neurologists who couldn’t find effective combinations of anti-seizure medications. After months of staying up for hours and studying a large body of epilepsy research, based on what I learned, I initiated adding Topiramate and discontinuing night-dose of Lamictal. This helped. (Studies had shown lamictal given at night can trigger status-myoclonus and the neurologist didn't know that).

Several psychiatrists couldn’t find medication that reduced my son's savage self-injurious behaviors. They tried. And by no fault of their own, it's tough because he has epilepsy. No doubt it's complex. Nevertheless, I never gave up. I continued to do research and discovered Nicotine Patch may help.

I figured it would help because I connected the FACT nicotine will increase choline in the brain to the FACT my son's FMRI showed blunted choline. Nicotine patch has helped. It doesn't end there. Most the times my son has went to Emergency Room, I figured out underlying etiologies. I asked for tests and treatments that helped. The times I didn't were disastrous. They would simply guess and try and get him out the door as fast as possible without proper treatment.  

I have nothing against doctors. Most doctors are extremely intelligent. And want to help. I’m just a bit more intelligent about this type of autism, based on my personal experience, observation and understanding of this complex situation. Furthermore, I evaluate every clue, every possibility, every shred of hope.

Parents of autistic children are exhausted by “autism experts” who know little about autism. Experts who know little don't help. They waste your time. A credential, certificate or title doesn’t make one an autism expert. Too many autism experts hide behind titles and find places like Clinics and Centers; Institutes and Universities to hide. A hallmark trait of experts who ‘know so little’ is intellectual laziness

Once they get a degree and recognition, they stop learning. They borrow and regurgitate each other’s studies, forever adding new twists, hoping we won't notice they're leading us in circles.

Accustomed to hearing, “renowned” or “distinguished”, all these carefree autism experts who know nothing want to do lately is write papers, give lectures and serve on committees.
Experts who don't know much tend to lump all autistics into an unpolished autism category, claiming it’s to thwart the “over diagnosis” epidemic. 

I agree there’s an epidemic of over-diagnosing autism, but the answer isn’t to ignore or remove hallmark traits and characteristics of autism, especially the more "difficult features."  As in self-abuse. Or aggressive behaviors.

Better to teach doctors and psychologists to recognize disorders that are often misdiagnosed as autism. For instance, Fragile-X test can confirm mental retardation as primary diagnosis. (Ie...My son was tested twice, and it’s always negative), thus RULING out Fragile-X.
Ditto doctors have diagnosed children with Fetal Alcohol Syndrome (FAS), as autism. FAS has a unique and distinct look (small eyes, flat cheeks, very thin upper lip, short, upturned nose). It's not autism.

 Another disorder sometimes misdiagnosed as autism is Landau-Kleffner Syndrome (LKS). Children (usually between ages of 3-7 yrs old) with LKS present with sudden onset of seizures and loss of language skills. After seizures are treated with anti-epileptic medication, the LKS child’s previously viewed “autistic behavior” gradually improves. They are sometimes seen as "recovery" stories of autism. You feel great for the kids, but it's not an accurate portrayal of autism.

Still other disorders misdiagnosed as autism are ADHD, Rett Syndrome and, rarely, Multiple Personality Disorder (MPD). Donna Williams, an “autistic adult” who has written books, has, by her own admission, stated she’s now been diagnosed with Disassociate Identity Disorder (DID), which is another term of MPD. 

Then there is the most bizzare case of Amanda Baggs, a woman who most assurdely is a case study in abnormal psychiatry. Research shows she was very different in her teen years than she is in her You Tube Video.
http://webspace.newschool.edu/~simod979/IDEAS_D.Simons.March2010.pdf.
http://autismfraud.blogspot.com/2008/02/letter-about-amanda-baggs-fraud.html

http://blogs.jwatch.org/general-medicine/index.php/2011/01/autism-whats-the-truth/.
To be fair, there are also rare cases where a child or adult with authentic autism or Aspergers is diagnosed with something different and needs to be re-diagnosed.  Baggs is a sad case of drug-induced brain damage. I hope she finds healing.

Bottom line is an autism diagnosis should not be easy to make. Mild or Severe autism is a complex disorder typically diagnosed in childhood. 

 Reaching an autism diagnosis involves intelligent analysis, expert knowledge, careful consideration and a process of elimination to ensure accuracy in diagnosing.

A child, who likes to spin, loses his words and lines up Legos, isn’t necessarily autistic. He/she could be having sub-clinical seizures, suffering from a metabolic disorder or have a genetic condition. When my son began smashing his fists into his head as a toddler, I had him tested for Lesch-Nyhan Disorder ( inherited disease caused by a deficiency of the HGPRT enzyme, produced by mutations in the HPRT gene located on the X chromosome, which causes a build-up of uric acid in all bodily fluids). Tested, twice, and both times negative, thus giving us a clearer picture of autism with self-injurious behaviors not rooted in another disorder.

Before arriving to autism diagnosis, all possible etiologies should be explored, tested and ruled out. Oh, but that's costly. So it's cheaper to slap on autism label? As I've said again and again, since the age of 2, I have pushed for an unbelievable amount of testing to rule out other factors involved in my son’s case, thus ensuring acutal autism.

It is EXTREMELY rare a parent or professional does this.

The topic of RULING OUT other factors besides autism, isn't a popular topic. We aren't hearing autism experts like Catherine Lord, Ph.D (bless her tired, greedy heart) discuss it because she has no vested financial interest in a doctor making an accurate autism diagnosis, only doctors who will use her ADOS instrument so she can get more royalities from her invention. Am I right? Sorry Catherine, no disrespect. Money and the allure of fame is a strange motivator. It makes people say and do things they normally wouldn't do.

Catherine Lord's ADOS invention:Source:en.wikipedia.org/wiki/Autism_Diagnostic_Observation_Schedule
The Autism Diagnostic Observation Schedule is an instrument for diagnosing and
assessing Autism. It was created by Catherine Lord, Ph.D.,



Too many professionals today are quick to make the autism diagnosis without ruling out other possibilities.


Because I've pushed for testing, including a plethora of genetic tests (they are still improving these tests) and MRI's and CT scans (all of which show no structural abnormality) my son’s case is perhaps one of the most well-documented honest, factual and authentic cases of severe autism you will find.


Still, all this said, we can't forget that even if a child is misdiagnosed with autism, it's still important to find treatment and help the child. Losing an autism diagnosis shouldn't mean losing needed supports and services.  


What will it take to get these experts who know little to know more?

Is the DSM-5 team or “task-force” ready to evaluate realities of autism? To bring up topics of "ruling out" other disorders? Why dont' they discuss this?It seems a no brainer. Hello. You'd want to rule out other things. Let’s hope they get talking. The autism community can’t afford another “expert-driven” autism intelligence failure.





Kim Oakley has a Master’s Degree in Cross-Cultural Education. She has never been addressed as “my esteemed colleague”.  She has never been called “distinguished” or “renowned” –though she’s been called a lot of other things. Ms. Oakley can read, recycle, write, mop, play soccer, play charades, speaks Spanish and knows a little German, but is NOT an expert in a darn thing except understanding and helping treat severe autism with self-injurious behavior and seizures.