'I-28Sfuuy-WR10okMSia3VYeZTm2RHA2LZDel59TlF8' name='google-site-verification'/>www ghs.google.com 6dseurqgapmn gv-v6egtfduggmq3k.dv.googlehosted.com Autismwarriormama: August 2011

Living with Autism

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August 26, 2011

Choline and Autism: Why Nicotine Patch May Help

Nicotine Patch is a unique way to elevate dopamine and acetylcholine in areas of brain—areas that boost learning, language and mood.

Anyone living with severe autism and challenging behaviors knows the value of better moods. Better moods=better behavior. Better behavior=better focus. More focus= more learning.

Exactly why nicotine seems to help my autistic son has become an obsession, as if answer is a secret treasure and I can’t stop digging. Not that nicotine therapy is a secret, but it may as well be, as it is rarely discussed, studied or prescribed in behavioral or medical management of severe autism.

So little is known about nicotine therapy for autism, it was hard to convince doctor to prescribe it. It all began the Summer of 2011. I refused to sign the discharge papers until I spoke to ANOTHER doctor. They weren't sending my son home AGAIN, in a continuous self-abusive meltdown. I waited. And waited. I paced hospital ward. I bugged nurses. Finally, I get a call. I BEG the on-call doctor to prescribe Nicotine Patch before my son is discharged.

(He had been admitted for an acute adverse reaction to anti-psychotics. He was a physical and emotional mess. I was desperate.) I Had just poured over research for hours, wondering what the hell we were going to do now. “We’ve got nothing to lose,” I told doctor.

“Nicotine elevates choline and his brain needs choline.” It was a grab in the dark. I wasn’t sure nicotine would help. All I knew was nicotine elevates a neurotransmitter (acetylcholine) shown to be blunted in my son’s fMRI. And that Choline in brain is critical for cell communication and function. That’s why it’s added to baby formula and critical part of pre-natal care. It’s also why Alzheimer’s researchers are analyzing nicotine therapy as a novel, emerging treatment. Why autism research isn’t looking closely at nicotine is unclear.
What is clear, in my opinion, and from our personal experience, is the nicotine transdermal patch is a potential NEW and EFFECTIVE therapy for helping autistics suffering from intraccable self-injurious behaviors.

Especially, when there is evidence (like from my son's fMRI) of acetylcholine dysfunction. How many autistics suffer from acetylcholine dysfunction? Nobody knows.

Is severe autism associated with a deficit of acetylcholine? Research shows it is. Can drugs given to autistics deplete choline? Yes. Or is there an enzyme dysfunction in autism that thwarts choline converting into acetylcholine? Research shows it's possible. Don't expect your doctor to know this, by the way. The only way you can check is with brain scans, which almost no psychiatrist does before prescribing a drug that alters neurotransmitters in your brain. Wouldn't it be wise to KNOW what the brain needed before prescribing medication? Otherwise, you're just guessing. Sure, the brain scan may not give you an absolute picture of what's going on, but it's better than NO picture of what's going on and introducing drugs with no target goal in mind. It was pretty clear to me: fMRI shows blunted choline, I need to get more choline into my son's brain. How do I do this? (Galantamine is another way to increase acetylcholine in the brain. )

To test if increasing choline in your autistic child’s brain helps, you can always increase choline rich foods. If you note improvement, this provides evidence for doctor to consider nicotine therapy for possible choline-deficient fueled problem behaviors.  Average person needs about 500 mg of choline a day. Following foods rich in choline:

1.    Eggs. Don’t worry about cholesterol. I have never understood the tired mantra of “don’t eat too many eggs.” Egg yolks have lecithin. That means it doesn’t matter how much fat is in the egg, because lecithin is a fat emulsifier. One egg has about 125 mg of choline.


2.    Fish. Cod has about 71 mg per 3-oz. Salmon about 55 mg and Shrimp about 60 mg.
3.    Liver. Highest amount at 355 mg per 3-oz serving. Yuk. I’d rather eat 3 eggs.
4.    Broccoli.
5.    Avocados
6.    Apricots
7.    Figs, dates
8.    Bananas
9.    Spinach
10 Cashews
11. Wheat Germ
12. Orange Juice

Here's SOME of the research I did in July 2011, to justify trying Nicotine Patch for self-injurious behaviors in my severely-autistic son: 

 

Nicotinic receptor abnormalities in the cerebellar cortex in autism.

1.                              brain.oxfordjournals.org/content/125/7/1483.abstract
By binding to nicotinic acetylcholine receptors, nicotine increases the levels of
several neurotransmitters - acting as a sort of "volume control". It is thought that ...

2.                              Brain. 2002 Jul;125(Pt 7):1483-95.
3.                              Brain research Molecular brain research (2004)
            Volume: 123, Issue: 1-2, Pages: 81-90
                  PubMed ID: 15046869
4.       Department of Psychiatry and Behavioral Sciences, Duke University Medical Center, Durham, NC 27710
  1. Findings point to dendritic and/or synaptic nicotinic receptor abnormalities in cerebral circuitry development
  2. http://www.livestrong.com/article/404115-how-to-naturally-increase-acetylcholine/#ixzz1LvRO9Jmf
  3. http://www.jneurosci.org/content/18/15/5555
  4. http://www.ncbi.nlm.nih.gov/pubmed/15046869 

    Molecular analysis of nicotinic receptor expression in autism.

  5. Neurotransmitters in autism and role of calcium signalling ... receptors, with
    binding of muscarinic M(1) receptor being up to 30% and that of nicotinic
    receptors being 65%-73% lower in the autistic group compared to controls [
    11431227]. ... release of dopamine and acetylcholine has also been observed [
    14657041].
    www.autismcalciumchannelopathy.com/Neurotransmitters.html -

  6. Nicotine interacts with nicotinic acetylcholine receptors (nAChR) which are ... on
    developmental disorders such as schizophrenia, bipolar and autism ... (2006) "
    Effects of paraformaldehyde fixation on nicotinic acetylcholine receptor binding in ...

    medicine.tamhsc.edu/basic-sciences/next/.../ursula-winzerserhan.html


  7. Deficiency of Nicotinic Receptor-Neurexin Interactions in Autism ... type of
    receptor called nicotinic acetylcholine receptors has been reported in ... In
    addition, it aims to determine whether the activation of nicotinic receptors by
    drugs that bind ...

    www.autismspeaks.org/.../deficiency-nicotinic-receptor-neurexin-interactions-autism

    THis is YET another 200,000 GRANT to STUDY something in autism. Good luck with that study....i wonder if we will ever hear the results or if it will ever HELP any autistic person????? No doubt this study will end with "further studies are needed.." 
  8. (nAChRs) and autism,,,,suicidal/self-injurious behaviors, among .....
    NAChRs contribute to the regulation of several mood-related ......Yerkes National Primate Research Center for Behavior Neuroscience, Emory ...
    Nicotinic cholinergic receptor agonist ( nAChR) .... Self Injurious Behavior .....Acute tryptophan (use 5HTP??) depletion and self-injurious behavior in aggressive patients and
    .... the subunit composition of brain nicotinic acetylcholine receptors (nAChRs).


www.news-medical.net/health/Nicotine-Pharmacology
Kim Oakley

August 12, 2011

Nicotine a Novel Treatment for Autism?

Award Winning Non-Fiction Blogs - BlogCatalog Blog DirectoryAfter studying the latest little know treatment for autistics with challenging behavior, I am convinced that Nicotine may be an effective treatment in treating autistics with intraccable behaviors. IE.... self-injury and aggression. While there is little media coverage on this treatment, research is promising. For example, nicotine has positive effects on acetylcholine and dopamine in the brain. Acetylcholine is often blunted in brains of autistics with challenging behaviors. This could explain why they remain such hard to treat patients. After all, if the brain is deficient in choline, you will have a difficult time learning.

 In order to TEACH an autistic person held hostage to self-destructive behaviors, you need windows of opportunity. Teaching moments, that will teach them to stop harming themselves, or others.

My severely-autistic son was first prescribed the nicotine patch on July 17th, 2011. As of today, August 11th, he has not had ONE episode of severe self-injurious behavior. Yes, he's had some hitting episodes, mostly involving slapping his thighs or hips, but no savage head hitting, which is something he's suffered with for many years, despite a myraid of conventional treatments.

Research also shows that nicotine is considered a novel treatment in other brain disorders. Case in point,

ScienceDaily (Oct. 13, 2010) — "A team of neuroscientists has discovered important new information in the search for an effective treatment for Alzheimer's disease, the debilitating neurological disorder that afflicts more than 5.3 million Americans and is the sixth-leading cause of death in the United States. Hey-Kyoung Lee, associate professor in the University of Maryland Department of Biology, and her research team have shown that they may be able to eliminate debilitating side effects caused by a promising Alzheimer's drug by stimulating the brain's nicotine receptors...."By stimulating the Alpha7 receptor with nicotine, we were able to recover normal brain function," explains Lee. "We are very hopeful that this will be a way to overcome the deficits seen with the BACE-1 knockouts...."

Indeed, nicotine therapy seems a logical if not critical treatment in some cases of autism. Who would think? Another example of science behind nicotine therapy for autism: "Autism is a common developmental disorder associated with structural and inferred neurochemical abnormalities of the brain. Cerebellar abnormalities frequently have been identified, based on neuroimaging or neuropathology. Recently, the cholinergic neurotransmitter system has been implicated on the basis of nicotinic receptor loss in the cerebral cortex. Cerebellar cholinergic activities were therefore investigated in autopsy tissue from a series of autistic individuals."

Source: Nicotinic receptor abnormalities in the cerebellar cortex in autism, by authors M. Lee, C. Martin-Ruiz, A. Graham, J. Court, E. Jaros, R. Perry, P. Iversen, M. Bauman and E. Perry. Study goes on to say, "Since nicotinic receptor agonists enhance attentional function and also induce an elevation in the high affinity receptor, nicotinic therapy in autism may be worth considering."
Like many parents with autistic childre, I am skeptical of treatments. I don't trust them, until I find definitive truth or reality about how the treatment can actually help an autistic person. Research on nicotine for autism is one treatment I can say, at least for now, is working.

The nicotine patch (which is not same as smoking tobacco) has most definately reduced my severely-autistic son's brutal self-injurious behaviors. Not only that, but we've all seen a marked improvement in his eye contact; has more self-control (isn't punching himself as quickly and frequently despite common triggers that spark self-injury), mood (seems happier), learning  (staring at books and words when we read them to him. And actually stooped down and moved pieces of a toy the other day), and increased motor skills (he's able to hold things like a pen or tipper cup longer).
I know, there is always a new treatment in autism that is met with anxious and desperate hope, but I'm telling you first hand, I and others have witnessed major improvement for our autistic son since the application of his first Nicotine Patch (14mg to start then, as per psychiatrist, we'll move to 7 mg).

Even more exiciting is, "Recent studies have indicated that nicotine can be used to help adults suffering from autosomal dominant nocturnal frontal lobe epilepsy. The same areas that cause seizures in that form of epilepsy are responsible for processing nicotine in the brain."  That's good news for autistics who suffer from these type of seizures.  Source: Lundbeck Institute

If anyone has testimony to Nicotine Patch or therapy being helpful for their autistic child or patient or client, please leave me a message. Treating autism is never a one therapy approach, we know that. But it does seem Nicotine therapy could be a novel and emerging treatment in children and adults with autsim. Professionals or researchers who are interested in this new treatment, please share your thoughts.

Finally, just saw a 2008 post by one of my favorite autism bloggers: See Facing Autism in  New Brunswick site article from November, 2008: http://autisminnb.blogspot.com/2008/11/autism-and-nicotine-addiction-neurexin.html.

UPDATE: October 3rd, 2011: Aside from one week of crazy SIB that was rooted in fecal impaction, the nicotine patch is still the most effective therapy we've found for modifying self-abusive behaviors. Perhaps, this is what is called "smokers paradox."

August 5, 2011

Abuse, Neglect and Murder of Autistics a Growing Concern

Award Winning Non-Fiction Blogs - BlogCatalog Blog DirectoryAugust  3rd, 2011. Md. psychiatrist, teen son dead in murder-suicide. This latest murder suicide to hit autism community involves a respected author-psychiatrist who decided life was too painful and killed herself and her autistic teenage son. It is unclear as to psychiatrist’s mental state or what transpired in her autistic son’s life that made life so unbearable, though hints of her son being bullied at school and her struggling in a man’s work world emerged. Heartbreaking. Disturbing. See full story at: www.cbsnews.com/stories/2011/08/03/ap/.../main20087820.shtml



  1. 2011. UTICA, N.Y. (AP) – “A 37-year-old former state worker (who was this guy’s supervisor?) admits he created a pornographic video of himself sexually abusing a severely-autistic boy”. Source: http://www.9wsyr.com/news/local/story/State-group-home-worker-admits-abusing-autistic/n-Ja4ZTAckSUVMwuZ3UMYw.cspx


  1.  2007 – Cops say at least 4 licensed health care workers beat a severely-autistic woman over and over. They say the owner suspected the abuse (then she should’ve stepped in earlier). Source:transcripts.cnn.com/TRANSCRIPTS/0708/21/ng.01.html
  2.  2011-Louisville, Kentucky. “Hidden camera video shows man abusing 13 year old autistic boy”. Source: www.wlky.com/news/28615118/detail.html


  1.  2011—Los Angeles, CA. “Police looking for additional victims after man employed as an in-home caregiver arrested for molesting autistic child. Jeremy Shawn Stockton, a 29-year-old, is an employee of Wellspring, a local agency that specializes in behavioral intervention for young children with autism (is there anywhere we can feel our children are safe?)  Source: http://latimesblogs.latimes.com/lanow/2011/04/lapd-seeks-info-in-child-molestation-case.html


5. 2010-TACOMA, Wash. –Jerry A. Johnson has been charged with second-degree rape. He's listed on state's sex offender registry and now charged in the rape of a severely-autistic man who has the mental capacity of a 9-year old. According to police, the 24-year-old autistic victim was fishing when Johnson lured him into the restroom and sexually assaulted him. Source: http://www.komonews.com/news/local/87194062.html

 

6.  2011-Chelsea, Mass., man charged with abusing severely- autistic woman he cared for in Winthrop, Mass. Timothy Kubara was accused of assaulting Mary Elizabeth Morrow, a 34-year-old severely-autistic woman, at a group home (and we wonder why parents worry about placing their autistic children in out of home placements). ”It's sad that he was just smacking her around and she couldn't defend herself, nor could she speak and let us know who was doing this to her," sister Christine Morrow said. Kubara was held on $5,000 bail. Kubara is a native of Kenya, and was enrolled in community college courses.  Source: http://www.thebostonchannel.com/news/769426/detail.html#ixzz1TTfxzmoM

 

7.  2007- Toronto News, Canada: “A judge has ordered a couple to stand trial for the starvation death of a severely- autistic relative, rejecting a guilty plea by the husband. In addition to standing trial for criminal negligence causing death and failing to provide necessities of life, Allison Cox, 32, will be tried for manslaughter in the death of Tiffany Pinckney, her 23-year-old adopted sister. The woman suffered from severe autism, a neurological disorder. Most autistic people have difficulty with verbal and non-verbal communication”. Source: http://www.thestar.com/article/169979

 

  1. 2011-Novia Scotia. An autistic man was locked in a room (while staff watched TV, took smoke breaks and made cell phone calls, no doubt) at a special care home (I’d say ‘special’ is not the correct term for this loosely controlled dump) in Nova Scotia for 15 days, sometimes urinating in corner when nobody knew he needed to go to the bathroom, says his mother and staff at facility. Investigators with the Department of Community Services determined the case constituted abuse under the province's Protection of Persons in Care Act. The abuse report was provided to The Canadian Press and noted it as a "failure to provide adequate care" by the institution. Source: http://www.thestar.com/news/canada/article/928276--family-gets-apology-after-autistic-man-confined-in-room-for-weeks


9.  2010--New York police today discovered the body of a 9-year old autistic boy in a luxury Manhattan hotel room, strangled to death by his "socialite" mother, who had also tried to kill herself, by overdosing on prescription pills. The mom, a Manhattan socialite, had become increasingly detached as she tried to find a way to treat her 8-year-old boy's [severe] autism,” friends said. (Just sad) Source: http://abcnews.go.com/US/gigi-jordan-socialite-kills-autistic-son-new-york-hotel-suicide/story?id=9760533

 

10.   2010--New YORK, United States – New York police say a Jamaican woman, frustrated over the demands of raising an autistic child, shot the boy to death before turning the gun on herself. Police said 37-year-old Micaela Jackson and Kenneth Holmes, 12, were found in the bed of the single mother's apartment in the Bronx on Wednesday night with a single gunshot to their heads.
Source:
http://www.jamaicaobserver.com/latestnews/JA-mom-kills-autistic-son--herself#ixzz1TTRUR1DC


11.         2006. “Autistic Boy Slashed to Death and His Father Is Charged. “A severely-autistic boy was found slashed to death in a bathtub in his Bronx apartment yesterday morning after his father called the authorities to report that the boy was dead,” the police said. Source: http://www.nytimes.com/2006/11/23/nyregion/23slash.html


12.    2010—Wales. Family of a severely-autistic boy allegedly murdered by his mother in an airport hotel room today said he was "a wonderful, beautiful, happy boy". The body of Glen Freaney, 11, was found at the Sky Plaza Hotel near Cardiff Airport on Saturday. Source: http://www.independent.co.uk/news/uk/crime/autistic-murder-case-child-was-a-wonderful-beautiful-happy-boy-1976092.html


13.   2010—CRESTLINE, CA. (KTLA) -- San Bernardino County Sheriff's Department says a woman shot her 9-year-old [severely-autistic] grandson to death and then turned the gun on herself. (Some speculated this grandma was on pain pills, had run out and then, under the increasing pressure of handling her autistic grandson, she snapped). Very sad story. Source: http://www.ktla.com/news/landing/ktla-crestline-murder-suicide,0,26942.story


14.2010. Death of a severely-autistic patient, 27, who had been restrained at a state run PSYCHIATRIC FACILITY (wow, you can’t even trust psychiatric placements) in NEW YORK has been ruled a HOMICIDE. The autistic patient, who functioned as a young child, had no history of outbursts requiring prolonged restraint. 27-year-old Jawara Henry suffered from severe autism and died on the South Beach Psychiatric Center Campus during a program run by the state. Investigators say while trying to restrain the autistic patient, Erik Stanley, a supervisor failed to follow protocol, failed to use proper techniques, and caused Henry's death by using excessive pressure on his neck and torso.   (Reminds me of time I found my severely-autistic son tied like an animal at a hospital, restraints cutting into his hips and wrists, nurses sitting around, talking about where they were going to lunch). "This is a case about rampant abuse and neglect at the state run facility," Gary Douglas, the family's attorney said.




15.           2008-- A Grand Junction man allegedly shot his teenage son in the face while he was sleeping. The boy, 13, suffered from a mild form of a neurological disorder similar to autism called Asperger Syndrome. How sad, I wonder how this psycho father would’ve handled a severely-autistic child. Source: http://www.denverpost.com/news/ci_10493903?source=pkg#ixzz1U5U3xNJk


16.      2006, in Hull, England, Alison Davies and her 12-year-old autistic son, Ryan, fell to their deaths from a bridge over the River Humber, in an apparent murder-suicide.


17.      2009.   “The deaths of a man and his 11-year-old autistic son on Sunday were the result of a murder-suicide….At one point, the family took the boy to the emergency department of an Edmonton hospital, where he was later admitted to the psychiatric unit…But trained psychiatric staff weren't equipped to help a child with autism. Eventually, a place was found for the boy in a group home, but search was a struggle, because many group homes are not set up to deal with autistic children with extreme behavioral problems.” And of course, "government was working on” (government officials are always ‘working on’ something instead of delivering it) emergency respite services for family, but recent cutbacks meant plans were put on hold.”  Source: http://www.cbc.ca/news/canada/edmonton/story/2009/09/29/edmonton-murder-suicide-confirmed.html 

*Above case illuminates lack of emergency services to help families of severely-autistic children. Over and over, families in crisis are told to ‘call police’ who will take autistic child to psychiatric hospital or ER, but [nurses and doctors] seldom have training required to treat or help autistic patients. One doctor told news reporters, “ER room is not the place for children with autism." Oh, OK, so if a psychiatric unit, ER room, institution or group home setting can’t handle autism, then who can? WHERE DO PARENTS GO FOR HELP IF THE PLACES INTENDED TO HELP TURN THEIR AUTISTIC CHILDREN AWAY?

I wonder if an ER room, doctor or psych unit official told a Bi-Polar, schizophrenic, Alzheimer’s or suicidal Transvestite, there was NOBODY there to handle their "special needs", if it would make FRONT PAGE NEWS. Apparently, it’s still okay to discriminate against autistic people, because, well, if you say you don’t know how to handle them, that abdicates your responsibility to treat or help? How convenient. What a pathetic excuse for inaction. Yes, they are difficult to treat, but there are parents like me who, for years, have tried to illuminate this need and yet we still see INACTION. Or we find professionals who don’t understand severe autism training people to care for autistics.

 Doctors, nurses and ER staff, and other places that encounter autism must LEARN how to handle, treat and help severely-autistic patients. You can’t deny treatment because you aren’t trained. Get trained. If there is time for state, federal and county-funded  “multi-cultural sensitivity training” and “violence in the workplace seminars” and “religious sensitivity training” and “sexually harassment” workshops, officials can damn well fund training to enhance the treatment and care of autistic population.


18.      2010--Autistic son (high functioning) kills father* says law enforcement, family in shock. The family says Adam’s behavior had become increasingly agitated and aggressive in past few weeks. Family took him to emergency room over weekend and doctor on Monday. "[They were] begging for help, asking for someone to take some time and evaluate," said the autistic man’s sister. (Shortly after the doctors visit, Adam went back to father's house and that is when stabbing took place—a tragedy, the family was trying to prevent).  Source: http://www.kltv.com/story/12988950/autistic-son-kills-father-says-law-enforcement-family-in-shock?redirected=true\\
* It is rare autistics kill, and if they do, it’s not malicious, so please, if you are a teacher, law enforcement or healthcare official, don’t panic when you come across an autistic person. Clearly, this autistic man was higher functioning and may have had additional mental issues. Most autistics would never think to do kill someone. Nor possess mental or physical abilities to harm another person. Conversely, many harm themselves. The reason I posted this story is to show how this family in crisis sought help, and was denied effective emergency care. They did what professional urge families to do, and they were abandoned.

19.    2003: A 68-year-old Haifa resident yesterday shot to death his adult daughter, apparently for health reasons, and then committed suicide. The 33-year-old daughter was autistic. The father shot her in bed. He then apparently shot himself while sitting in the chair next to the bed. One could only imagine the heartache and fear this man felt. Apparently, he had mentioned he was terrified to leave his daughter behind, once he died. So, sadly, he took her with him. Source: http://www.haaretz.com/print-edition/news/father-kills-autistic-daughter-then-self-1.102222

20.        Charles-Antoine Blais was murdered in Montreal in 1996. He was six years old. He had been diagnosed autistic when he was five. He was held down and drowned in his bathtub by his mother, Danielle Blais. She was charged with first degree murder. This was later reduced to manslaughter, to which she pleaded guilty. The murder received a lot of media coverage. Autism society wanted everyone to know how devastating it is to have an autistic child, and how understandable it is that a parent would kill such a child.” Downplaying death as ‘understandable’-- because child has autism-- is dangerous thinking. Having autism should not be a death sentence. What is understandable is how ignorant society is serving severely-autistic persons. Most agencies charged with duty to provide services and supports to families raising severely-autistic children and adults don’t understand severe autism.  Worse, officials have repeatedly fumbled funds intended to provide critical services to severely-autistic persons.


21.    2011--Parents of a severely-autistic boy, who was dropped off in the lobby of the Broward General Medical Center in Florida, have been found. Source: http://www.imperfectparent.com/topics/2011/07/09/florida-the-parents-of-severely-autistic-abandoned-boy-found/


Meanwhile, many journalists fail to investigate, analyze and uncover reasons so many families of severely-autistic children are suffering. There are three primary reasons: Lack of or absurd delays in family supports and services; lack of  teaching healthcare professionals how to manage complex behavioral and medical needs of severely-autistic persons and inadequate training of hired staff to care for autistic persons.

How do we change this epidemic of failing to treat, protect and serve severely-autistic persons in the community? California is shutting down state institutions and tossing the most severely-autistic adults into group homes and adult day programs. Communities are not prepared. Hence, this is an approaching storm, which warrants pro-active steps to protect and serve vulnerable autistics in the community.

 

“Every human being has a responsibility for injustice anywhere in the community.” ----Scott Buchanan

 

 

8/5/11   Kim Oakley, M.Ed.  Advocating for Better Treatment of Severely-Autistic Persons