Finding Your Calm after a Week of Traumatic Events

Finding Your Calm after a Week of Traumatic Events

The focus on North Korea’s possible nuclear attack of early April seems like a distant memory after this week’s events.  The Boston Marathon Terror bombing followed closely by the ricin-tainted mail discovered in both White House and Senate mail and then the West, Texas fertilizer plant explosion.  Americans of all walks of life were shocked back into the reality that ours is a world in which bad things can happen to good people.

Those who were close to the explosions are likely walking around with undiagnosed concussive injuries, which can display itself with emotional as well as physical symptoms.  I hope that hyperbaric oxygen therapy will be made available.  (For more on that check out the International Hyperbaric Medical Foundation) For those of us not directly affected, stress can and likely still is a factor.  It does not matter if you live in Boston, Washington, Dallas, San Diego, or Spokane, the stress of these traumatic events takes its toll.  If you have previously experienced a similar trauma, such as the residents of New York or Washington on September 11, or served in a war zone, these events may jolt you right back into the emotions of those events.  The same for those who were in New Orleans during Hurricane Katrina or the tornadoes in the South and Midwest.  These are the times that we all need to pause and check on our own stress levels and seek the calm within.

I was frustrated on Sunday morning to hear one of the doctors on Fox News jump right into promoting the use of medications for anxiety and depression, which I am sure happened on other news outlets as well.  One cannot medicate oneself back into feeling safe, so the suggestion is false on its premise (and loaded with risks as well as many of these drugs have risks for suicide in black box warnings on the labels.)  The challenge of course is that in the current gun control debate, that psychiatrists, psychologists and other doctors may report their patients to a ‘no gun buy’ database not unlike the ‘no fly list’ because they have deemed a patient as ‘no longer mentally fit’ for gun ownership.  I find the idea that a doctor, with no objective measures can be handed such power, with the medical community at large is ‘anti-gun’ is an egregious miscarriage of policy.  It this proposed database does become a reality, it will become a deterrent for those who truly need this type of medical care to seek assistance. This however is a discussion for another day.  If you need medical attention, please seek it.

What you do you to find your calm? 

Everyone has their own stress relievers, ways that they seek to find an emotional calm.  I have one friend who reaches for her bottle of anti-anxiety pills the moment she gets stressed.  Both my parents had been heavy smokers when I was growing up, but my father stopped smoking in mid-life.  However, when his mother passed, he bought a package of cigarettes and smoked half a pack on his drive from Pennsylvania to Maryland.  He needed to find some calm and thought the cigarettes would help.  Other people I know will turn to alcohol to dull the emotional sensors they are experiencing. There are other ways, some of which I discuss below.

Take a Walk

When the stress becomes too much, turn off the news and go outside and walk.  Other forms of exercise are also helpful.  I put my earplug in (I only use one ear plug so I am not totally absorbed while I’m walking and cross the road without hearing traffic)  and turned on music (this week a mixture of Bach, Beethoven, and Jon Serrie) on my smart phone and walked my dog a little bit more on good weather days.  If you want to put a spring in your step, consider the Beetles collection – there is something so stress breaking about listening to the early Beetles songs – Pop music at its finest!

The Power of Breath

There are a number of practices that encourage the focus on breath – meditation, QiGong and Yoga.  Each encourage breathing techniques.  Taking the time to simply breathe, deep belly breathing (like that taught to singers) counting to five as you breathe in, pausing and then a slow exhale of breath through the mouth is tremendously calming and has been shown even to help reduce blood pressure.

Mindfulness meditation or what is now being used with some war veterans, mindfulness exercises or ‘therapy’ in which meditation, stretching and acceptance of thoughts and emotions are utilized is a valuable tool for getting through stressful times like we are all facing.

If you do not know how to meditate, there are lots of audio sources, even from online resources.  My good friend Dr. Frank Lawlis has a series, The Quick Relief Collection, which can now be downloaded from I-tunes or Amazon. 

The Power of Prayer

Whether Christian, Jew, Muslim, Buddhist or other spiritual practice, there is a reason we refer to God in some texts as ‘the Comforter’.  The power of prayer alone and as a group is tremendously calming and sets the intention of finding your calm.  On April 18, 2013, the United States Senate Chaplain, Dr. Barry C. Black offered the following prayer at the start of the day:

Let us pray. Hear our voice, O God, and listen to our prayer. You know our inward thoughts even before we think them. As we place our trust in You, enable us to experience Your joy. Breathe upon our Senators the fresh Spirit of Your love that old things will become new and the darkness will turn to dawn. Amid the dangers and destruction in our world, give us the miracle of Your peace. Make us good stewards of the gifts You have given us.  And, Lord, we ask You to comfort the victims and families affected by the explosions in West, TX. We pray in Your great Name. Amen

I also find great calm in reading spiritual texts like the Bible and even the Qu’ran as well as poetry.  A favorite is Rumi.  The King Fahad Complex for the Printing of the Holy Qu’ran has what is likely the best English language translation.  I am not one that blames the acts of terror on the religion of Islam, rather, having lived in Saudi Arabia many years ago know that such acts of violence are a violation of this and all religions.

 Complementary Therapies

There are a number of complementary therapies that can be utilized to help find that place of calm.  If you have access to an acupuncturist, I find acupuncture to be a very powerful way to deal with stress overloads. After September 11th and the subsequent anthrax attacks, while working for Congress and being on the Capitol Complex, my stress levels were through the roof.  Many times, I called my physician who was also an acupuncturist and asked if he could fit me in to his day for an acupuncture session.  It got  me through impossible times and helped me find my calm.

Massage therapy, Reiki and Shen are other complementary therapies that can be very helpful.

Unlike pharmaceuticals, gentler approaches to dealing with stress are flower remedies, homeopathy, and dietary supplements.

The one that immediately comes to mind is Rescue Remedy is a specific Bach Flower Remedy that is a combination of 5 flower remedies, all working on emotional imbalances associated with stress.  Rose Rock and Star of Bethlehem are specific Bach Flower remedies that may help as well.

In homeopathy, there are a number of products that may help with stress including (but not limited to:  Aconite (Aconitum napellus), Argentum nitricum (Arg-n), Arsenicum album (Arsenicum, Ars), Calcarea carbonica (Calc), Gelsemium (Gels), and Ignatia amara (Ignatia, Ign).  It is important when picking a homeopathic remedy to make sure the characteristics described with the product ring true with you as different remedies are used with people of different personality types and differing characteristics.  This is a field I am fascinated with and have on my list of things to become more expert in.  The subtleness of homeopathic healing is so powerful and tied I believe into subtle energies.

There are also dietary supplements that are helpful during stressful times.  The B vitamins are essential.  I always ramp up my B complex during these times as B is considered the ‘stress’ vitamin, our body uses and needs more during these times.  Vitamin C is a given.  I think most of us get too little Vitamin C each day in our diet, so supplementing is important.

There are other ingredients or products that may be helpful.  Kava kava (Piper methysticum) was originally used in the South Pacific in places like Fiji as a ceremonial drink.  It has properties that promote well being, contentment and relaxation.  There are scientific studies in its use for anxiety. About 10 years ago there were 30 reports of liver injury in Europe from but it was never confirmed if there were drug interactions with the kava, or other herbs interacting with Kava or whether it was Kava at a very high dose that led to liver injury.  I have previously used kava kava in low doses and found it helpful.  Obviously if you have concern about liver issues, speak to a trained herbalist or nutritionist with training in herbs.

Sam-e (S-adenosylmethinone) is another important dietary supplement and one that I think gets too little attention.  It has been tested both as an injected drug and as an oral supplement for depression and inflammation.  It is important to make sure you are taking a good B-vitamin with folic acid, and vitamins B6 and 12 when if you take Sam-e.  There are some drugs that it interacts with, so make sure you read labels or seek expert advice (and check it out online.)  I have found some fact filled information at the University of Maryland website http://www.umm.edu/altmed/articles/s-adenosylmethionine-000324.htm

Be smart about any products you are going to use, read labels and take into account what your own personal medical history.

Food for Thought

Paying a little attention to your diet in stressful times is important as well.  Make sure you drink plenty of water.  If you are like me and you use caffeine therapeutically, then be careful not to turn two cups of coffee in the morning to six.  Consider switching the type of caffeine you use from coffee to tea for a day.  Tea is more soothing.

It is spring and berries are coming into season.  Enjoy the bounty – strawberries, blueberries, etc.  All of the anti-oxidants are important to overall wellness.

For many of us, stress eating can be an issue.  I could write the book on this, but for now, I will simply say, know yourself. Identify foods that may be unhealthy stress options, and be conscious of your stress eating.  If chips, chocolate and ice cream are stress foods for you, do not keep them in your house.

Keep it Simple Sweetheart (The KISS Method)

We are one week out now from the Boston Marathon Terrorist attack, and many are working to get back to normal.  Today, at 2:50 pm there is a moment of silence planned.

During these stressful times, just keep things simple.  If you feel overwhelmed, simply breathe, focus on the in and out of your breath until your emotions settle.  Do not overload yourself with projects and a long “To Do” list.

Be kind to those around you.  Stress can make us short tempered, usually with those we love the most.  I was thrilled yesterday to see the ‘hug patrol’ out in Boston.  The power of a hug cannot be discounted.

Take time to appreciate the blue sky and spring flowers.  Appreciate what you have and those that love you.  There is a dawn after the long dark night.  We all can find our calm. These stress tips I hope are useful here and to my friends around the world.

Boston Strong!

Always,

Beth

Autism – From Awareness to Action on Capitol Hill – April 14, 2013

Autism_Awareness_RibbonIn 1998 when I left the National Institutes of Health and began working for Congress, there was no ‘Autism Awareness Month’.  At the time, I had met exactly one child with autism and had one memorable discussion about the condition, a discussion with a rare disease expert commenting that the condition was ‘sadly no longer rare’.  Since that time I have met thousands of families in the autism community and the rates of autism have grown so dramatically that we have a national crisis which should be a topic of discussion in every news cycle.

Its now been more than a dozen years and once again the Oversight Committee has taken up the issue of autism.  Chairman Issa is a thoughtful and thorough individual whom I hope will continue with more hearings.  In early 2011 when I was first told that Chairman Issa  had promised Congressman Burton to conduct an autism hearing in the 112th Congress, I hoped we would get a hearing by April 2011. We did not; however that did not stop the autism community from bringing information to the Committee and pushing for oversight on issues throughout 2011 and early 2012.  Issues such as Poul Thorsen, the Vaccine Injury Compensation Program issues brought forward in the Unanswered Questions paper by Mary Holland, Lou Conte and others as well the numerous host of other issues related to research, services, and treatment access.  In meetings in early 2012, I brought up this promise to Congressman Burton and the wheels began rolling.  Because of Fast & Furious and other matters, the hearing did not occur until November 29, 2012.  But, it did occur and laid the ground work for Congress to again engage on autism oversight.  My conversation with one legislator this past week about the federal witnesses response put forward at that hearing mirrored that of many families – absolute disgust.  We have to push for more hearings and continued ongoing oversight.

I am honored to be consulting with SafeMinds in their efforts to educate legislators and legislative staff and to move Congress from awareness to action.  What is markedly different in 2013 than 1998 is that almost every office there is someone who either has a family member, or a friend with a child on the spectrum.  With 1 in 50 school aged children on the spectrum, this is to be expected.  Their educational forum this past Friday explaining environmental factors was well attended by staff from both the House and Senate.  There are many environmental factors that we already know are risk factors.  It is incredibly important that we ‘pick the low hanging fruit’ in the environmental research realm and confirm what is suspected; while in the mean time reducing access to risk factors.  Autism that is caused by environmental factors is very treatable, this has been shown both in practice and research.  Reducing exposure to toxins, pollution, and teaching women of child bearing age to build their nutritional base and avoiding exposure to toxins before becoming pregnant are ‘can do’ items we can and should implement immediately. These do not take acts of Congress to accomplish.

Autism is not a simple condition, it is complex, and affects every individual differently. Some have no verbal language, or struggle with verbal language, many who regressed into autism often as the result of a medical complication such as a vaccine injury or exposure to high levels of injected mercury have co-morbid medical conditions such as chronic inflammatory bowel disorders, metabolic and mitochondrial disorders.  Many also have seizure disorders and brain inflammation.

There are many urgent needs for the families living with autism as well as schools, states, and federal programs whose responsibility it is to  meet the needs of those living with autism.  Adults living with the milder form of autism known as high functioning autism or Asperger’s also have needs that cannot be ignored.  For example, under employment of highly intelligent, educated individuals on the spectrum is rampant.  There is also a segment of this community that do not feel they have a ‘disorder’ and celebrate in their ‘neurodiversity’.  A great challenge for the policy makers and the community is to take the full spectrum of needs and perspectives into account with respect for each other and setting priorities.  While the entire autism community will not come together on every issue, there are areas of common ground – like the need for Congress to Engage Annually in Real Oversight, ERISA Reform, Environmental Factors Research, and Service Needs.

I may not have an immediate family member with autism, but I am dedicated to helping the community and hope that others will bring their talents, energy and resources to the table as well.

Beth

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Thomas Jefferson – a Health Freedom Patriot

18082501-dawn-at-the-jefferson-memorial-during-the-cherry-blossom-festival-washington-dcThomas Jefferson may have been our nation’s first health freedom patriot.  There are many quotes in his writings.  They include:

“Liberty is to the collective body, what health is to every individual body. Without health no pleasure can be tasted by man; without liberty, no happiness can be enjoyed by society.

“The care of human life and happiness, and not their destruction, is the first and only object of good government.”

“Health is worth more than learning.”

Health freedom has never been more important than in the 21st century.  The United States is a nation founded on the principals of life, liberty and the pursuit of happiness.  
Inherent in our liberty, the freedoms granted to us by our Creator is the liberty to choose our own path to wellness coupled with the responsibility of our decisions.  
Our Creator has endowed us with an intellect and the ability to reason for ourselves.  We do not require any government to dictate our health decisions and constant vigilance and action is needed as a community to protect this liberty.  Because this liberty is inherent, it is not simply a benefit for those in the United States, but is a global liberty.

As I write this, the media has been focused on the threats of North Korea’s new young leader to use nuclear weapons and attack the United States, Japan and Guam.  The ongoing battle in Syria and unrest in Egypt seem to have faded from the front pages of new papers.  And the news on possible Avian Flu in ramping up in China, which will surely initiate a request in the United States for government funding to develop an avian flu vaccine.

Front in center is the discussion of gun control.  There is increasing discussion that all Americans who own guns should be required to participate in a national registration process.  This is very troubling given that government agencies never found a database they did not want to connect to other data bases and conduct research.  There is also discussion that all of this must be done to protect against another school shooting and to curb gun violence in places like Chicago where gun violence is increasing.  In Chicago, gun violence is related to gang violence and illegal possession of guns.  Newton is a tragedy for which we cannot ‘fix’ with federal legislation.  That the parents have become political activist and public relations props is most distressing to those of us who know that grief takes years not weeks to recover from.

What is lost in all of the current hype is that none of the proposed laws, or the laws recently passed at the state level would have prevented the Newtown, Connecticut shooting.  The common element that has gotten too little attention is psychiatric drugs.  At least 31 school shootings and/or school-related acts of violence have been committed by those taking or withdrawing from psychiatric drugs resulting in 162 wounded and 72 killed.  (http://www.cchrint.org/school-shooters/) Where is the media attention to this?  Where is the discussion of risk/benefit ratio on these drugs?  Where are the Congressional hearings and floor discussions?  There are a number of cases in which the toxicology reports and reports on drug prescribing has not been made public, so that number is likely much higher.  This is the case for Adam L. in Connecticut.  The medical examiner in this Connecticut has so far refused to release the information about what drugs showed up in the autopsy.  The non-profit able child is filed a legal appeal to get this information made public.  (http://ablechild.org/alert.htm).

How does this relate to health freedom?  The current ‘law of the land’ the Affordable Care Act, requires the implementation of electronic health records nation-wide.  One of the discussions is to give doctors the power to submit a patient’s name into a national database barring them from gun ownership, without informing the patient.  This is distressing on many levels as it is ripe for abuse.  Second to this is a discussion that anyone that has ever had a mental health diagnosis will be barred from gun ownership.  While on its face that seems logical, it is not because many  labels utilized in the billing categories created in the medical field are not true illnesses, or have been dramatically over used.  How many people have been wrongly diagnosed with depression who actually had thyroid or  other hormone related imbalances?  How many boys were labeled ADHD growing up who simply were energetic, intelligent and bored in class?  The National Institutes of Mental Health provides on their website that more than 26% of adults in the United States have a mental illness.  Will the medical community be used by policy makers to implement an overturning or gutting of the Second Amendment?  Something we need to think about.  The travesties in this are many.  Lives will be lost because Americans will avoid seeking medical care for fear that the police will show up to confiscate their guns after a doctor reports them.  This cannot become the fate of the United States of America.

There are no easy answers, but we cannot be satisfied with compromising liberty for all as a band-aid attempt to get over the grief we all feel for this tragedy.

Always,

Beth

The Hawk

Death by Unnatural Means in the Autism Community Matters We Can No Longer Ignore – August 10, 2011

Death by Unnatural Means in the Autism Community  Matters We Can No Longer Ignore – August 10, 2011

As someone who first came to know the autism community while working for Congress in 1999, I realize families living with autism have many challenges including providing medical and therapeutic services that drain every financial resource, challenges with obtaining adequate educational resources from public school systems, prolonged lack of sleep, high stress levels, and a higher than average divorce rate. The families coming together in various organizations and online have done much to educate and empower themselves to address policy changes at the local, state and federal levels. Because these families have worked together, there are increased research resources, and increased focus on environmental factors associated with the development of autism. Parents have been the driving force behind getting states to adopt insurance reimbursement guidelines and have led the way in looking at an integrative approach to addressing the myriad of co-morbid conditions often found an individual diagnosed with an autism spectrum disorder.

This week as Americans reel from largest single loss of life in the 10 year war in Afghanistan, the autism community is reeling from yet another tragic loss. The loss of two dozen elite special force members are losses I feel very deeply about as I hold in extremely high regard all those who serve in the military and especially those who go the extra distance to become elite special force members. People I care about have put themselves in harm’s way in the global war on terror. The sacrifice they and their family’s make should never be discounted. I know from past experience that this helicopter crash will be thoroughly investigated both to determine exactly what happened and to look at ways of preventing a similar tragedy in the future. The Department of Defense announced yesterday that Army Brigadier General Jeffrey Colts has been appointed to oversee the official investigation. Undoubtedly, the Congressional Armed Services Committees will conduct investigations and public hearings.

 But who is looking into the deaths in the autism community? Research discussed below indicates that individuals living with autism have  a higher death rate for seizures and accidents (such as drowning) as well as an elevated mortality rate in respiratory diseases in those individuals with autism and “mental retardation”. However, there is little to no attention paid to death by unnatural means.

 Death at the Hands of a Parent

In Kensington, Maryland, a psychiatrist took the life of her son Ben on Saturday and a day lady took her own life. Follow ups to the original story reported that the child, Ben, was living with autism and obesity. Conflicting news accounts have reported that she wanted to place Ben at Ivymount, a well respected school in the area as well as reporting that she wanted to have him return to Wellspring a boarding school where he had spent the previous year with great success (and lost 100 pounds). By all news accounts Ben was bullied in public school because of his autism and his weight. Dr. Jensvold’s family have released portions a letter she sent her sister. “School — can’t deal with school system…Debt is bleeding me. Strangled by debt…”

Her family shared with the media that, “Jensvold had become increasingly strained by financial pressure and by anguished fights with the county public school system over the special-needs education of her son, who had an autism spectrum disorder. They said the school district — apparently believing it could adequately educate Ben — had refused to cover tuition costs for the boy to attend a private school for special-needs students. Jensvold didn’t have the money herself and didn’t want to return her son to public school, where relatives said she felt harshly judged and marginalized and where Ben had struggled…It was a huge stress,” Slaughter said. “It’s very hard being a single parent under any circumstances, but to have a high-needs child is overwhelming. And then to have him inappropriately placed in the school, and have the school fighting with her, was really traumatic.” (Associated Press)

This story is sadly not an isolated incident. In July 2010, in the Bronx, Michaela Jackson took the life of her 12 year old son Mick and then her own. Also in 2010, Gigi Jordan described by the Associated Press as a multimillionaire former pharmaceutical executive and nurse killed her 8 year old son, Jude Mira, and possibly attempted to take her own life by overdose. She survived and will soon go to trial for her son’s murder. According to the media, “She’s invoking the concept of “altruistic filicide,” or child-killing by parents convinced they’re acting in the child’s best interest.” (Associated Press) There are already some challenges for the prosecution (the hospital lab lost a key blood sample taken from Jordan which could clarify whether or not she had attempted to overdose on drugs as she initially reported) which may affect the outcome of the case.

If there are three cases in 13 months, are there others?

 Death at the Hands of Caregivers

One of the first individuals who contacted me in 1999 had a son entering his adult years who was increasingly unmanageable at home. He told me he needed to have his son institutionalized but feared for his son’s life. I understood his concern, but had no reports I could reference to confirm or allay his concerns.

Today there are reports available but not organized that show cases in which an individual living in an institution dies at the hands of staff. For example, on December 4, 2010, at a Staten Island’s South Beach Psychiatric Center, supervisor Erik Stanley apparently used an inappropriate method of restraint (using excessive pressure on the patient’s neck and torso) and strangling to death Jawara Henry, a young man with autism. Stanley has recently surrendered to police and will be charged with, “criminally negligent homicide and endangering the welfare of an incompetent or physically disabled person.” Jawara’s mother reported that the young man had no history of outbursts but that she had seen bruises on her son. (Yakas)

In 2007, People Magazine published an article entitle, “Autistic Kids in Danger? Recent Deaths Raise Concerns About Care in Group Homes”. The story opened by discussing the death of Martha Quesada’s son Denis, which at the time the article was published the actual cause of death was undetermined. The article reports “six times the state’s Department of Children and Families was called in to investigate allegations that staffers had abused him. All the allegations were dismissed, and a lawyer for Rainbow Ranch denies wrongdoing in his death. But the home has since been closed by the state.” The article reported that four other individuals with autism had died while under the care of aides in the previous six months. (People Magazine)

The Legal Radar later reported, “The Miami-Dade County Medical Examiner found that Denis died of Central Serotonergic Syndrome. This resulted from “the co-administration of multiple psychotropic medications with no monitoring or supervision,” Denis, who had severe autism, died in a van after being restrained by group home staff was under the care of psychiatrist, Dr. Steven L. Kaplan, at the former Rainbow Ranch group home, owned and operated by David Glatt. In 2009, Denis’s mother filed a wrongful death suit because as her attorney stated, “This is a clear case of a 12-year-child who perished because he was given a lethal combination of off-label, dangerous, anti-psychotic drugs to control his behavior without appropriate consent, administration and supervision.” (Colodny, Fass, Talenfeld, Karlinsky & Abate)

Dr. Kaplan was eventually terminated from the Florida Medicaid Program because “administrators at three state agencies had expressed concerns about Kaplan’s prescribing of psychiatric drugs to disabled children before and after the May 23, 2007, death of 12-year-old Denis Maltez.” It is reported, that Dr. Kaplan, had more than 800 patients, mostly impoverished or disabled and had been notified repeatedly to reconsider his prescribing practices. Denis, who weighed around 70 pounds, had been on three different mental health drugs, two of them in the maximum dose, at the time he died. A pharmacist from the University of South Florida sent to visit Dr. Kaplan regarding his prescribing practices in May 2009 reported, “He said he had been practicing long enough to know how to treat his patients and was tired of being told what to do.” (PsychCrime Reporter) At the time of this report, the wrongful death lawsuit was still pending.

While the issue of using restraining techniques has gained some attention in recent years, and the FDA has issued black box warnings about many psychotropic drugs, there is not to my knowledge a report gathering the data on how often these incidences of unnatural death at the hands of caregivers in institutions have and are occurring.

Death at the Hands of Strangers 

In July, little Leiby Kletzky, an 8 year old boy of Brooklyn disappeared. The story gained national media coverage in part because this young boy was part of the Hasidic Orthodox Jewish community. He was kidnapped off the sidewalk in his Borough Park neighborhood, drugged, smothered, and killed by Levi Aaron, another member of the community. Leiby had been walking to meet his parents. His dismembered body was found two days later after surveillance footage was reviewed and the suspect identified. (Parascandola) Sadly there are predators and criminals in every town, not just in New York; however, to my knowledge no organization has collected and reported the extent to which individuals with autism become the victims of such predators and whether the incidence is higher than the general population.

The Scientific Analysis

In 2001 the findings of a study conducted by the Life Expectancy Project looking at causes of death in individuals on the autism spectrum was conducted in California. The goal was to determine how the causes compared with the general population. The researchers followed more than 13,000 ambulatory Californians between 1983 and 1997. Elevated death rates were found deaths related to seizures and accidents such as suffocation and drowning. Elevated mortality due to respiratory disease was linked to individuals with autism and mental retardation. (Shavelle RM) A follow on evaluation looking at data between 1998 and 2002, found a similarly elevated mortality rate. (Shavelle R M) Overall in both studies the mortality rate was about double that of the general population.

A study conducted in Denmark, published in 2008, involved 341 individuals on the autism spectrum who were followed between 1960 and 1993. The researchers found 26 individuals died nearly twice the expected level when compared to the general population. The rate was ‘particularly high in females.” The authors concluded: “Eight of the 26 deaths were associated with epilepsy and four died from epilepsy. Future staff education should focus on better managing of the complex relationships between ASD and physical illness to prevent avoidable deaths.” (Mouridsen SE)

Concluding Thoughts

The autism community has many challenges such as insurance reimbursement, recognition of co-morbid conditions, recognition of environmental factors, educational challenges as well as stress, finances, and family stressors. Premature death of an individual with autism by unnatural means, especially at the hands of a parent or caregiver is an area that needs more attention and solutions. Is there any organization or individual working on this issue? The first step in drawing attention is gathering the data on how often this is happening. The second step is raising attention to the data, and the third step developing solutions which can be implemented.

Bibliography

Associated Press. The Washington Post. 8 August 2011. 10 August 2011 <http://www.washingtonpost.com/politics/md-mom-who-killed-son-herself-agonized-over-education-costs-for-special-needs-child-debt/2011/08/08/gIQAdbTh2I_story.html>.

—. The Washington Post. 1 Auguust 2011. 20 August 2011 <http://www.washingtonpost.com/national/mothers-blood-sample-lost-never-tested-in-sons-nyc-hotel-death-she-calls-murder-suicide-try/2011/08/01/gIQAhR9MoI_story.html>.

Colodny, Fass, Talenfeld, Karlinsky & Abate. Legal Radar. 21 May 2009. 10 August 2011 <http://www.legalradar.com/wrongful-death/>.

Mouridsen SE, Brønnum-Hansen H, Rich B, Isager T. “Mortality and causes of death in autism spectrum disorders: an update.” Autism (2008): 403-14.

Parascandola, Nestel, Lauinger, and Hutchinson. New York Daily News. 13 July 2011. 10 August 2011 <http://www.nydailynews.com/blogs/dailypolitics/2011/07/apolitical-aside-tragic-end-to-the-leiby-kletzky-case>.

People Magazine. 27 August 2007. 10 August 2011 <http://www.people.com/people/archive/article/0,,20060043,00.html>.

PsychCrime Reporter. April 2010. 10 August 2011 <http://psychcrimereporter.wordpress.com/2010/04/21/psychiatrist-steven-l-kaplan-ousted-by-florida-medicaid-relative-to-death-of-7-year-old/>.

Shavelle R M, & Pickett, J. “Letter to the Editor: 1998–2002 Update on ‘‘Causes of Death in Autism’’.” Journal of Autism and Developmental Disorders (2006).

Shavelle RM, Strauss DJ, Pickett J. “Causes of Death in Autism.” J Autism Dev Disord. 2001 Dec (2001): 569-76.

Yakas, B. Gothamist. 3 August 2011. 10 August 2011 <http://gothamist.com/2011/08/03/supervisor_charged_with_strangling.php>.

 

Beth Clay

This article was previously published.

The Autism Vaccine Debate and Dr. Andrew Wakefield – August 30, 2009

The Autism Vaccine Debate and Dr. Andrew Wakefield – August 30, 2009

Autism_Awareness_RibbonI applaud Dr. Andrew Wakefield and Thoughtful House for taking a chance with a Dateline Interview. True to form, Matt Lauer told part of the story in a balanced way, but went on to convolute the discussion of MMR and autistic entercolitis with the bigger discussion of vaccine safety. He continually underscored the numerous large studies that point to no connection between vaccine injury and autism but failed to note the difference between CDC funded population-based epidemiological studies and laboratory and clinical research.

While all autism is not vaccine injury related, or MMR related, some are. The Vaccine Injury Compensation Program Court has ruled so more than a dozen times according to some media accounts.

For those of us who have followed Dr. Wakefield’s research both in the UK and now in the United States, and have taken the time to listen to his presentations, we have learned that he is a thoughtful and thorough scientist. He did what the ethics of good science call for, he kept an open mind, he studied the literature, he listened to the parents, and he did high quality laboratory and clinical research.

When Congress first began looking into the epidemic rise of autism rates, parents by the hundreds told us that their children, after vaccination, developed chronic bowel conditions in conjunction with symptoms that would eventually be diagnosed a autism spectrum disorders. Unlike so many doctors who simply discounted the years of chronic diarrhea and constipation as ‘something autistic kids get’, Dr. Wakefield did his job and determined what was happening in the gastrointestinal system and treated the condition.

Rather than run from the controversy, Dr. Wakefield did what a good doctor is supposed to do and continued to look for the ‘why’ in the seeming coincidence between MMR vaccination and the onset of both inflammatory bowel disease and the symptoms of autism spectrum disorders.

It has been ten years almost to the day that we first conducted a hearing to discuss this topic in the Congress. Sadly, those who should have been at the forefront of an earnest and honest review of the questions have focused on getting the answers they wanted rather than getting to the truth. Because of their failings, the public confidence in the Public Health Service and Vaccine Information/Research continues to decline.

Thankfully, Dr. Bernadine Healy, the former Director of the NIH has been bold enough to say the research needs to continue, that the research that the CDC and AAP are relying on would not catch the hopefully rare condition of autistic entercolitis. How rare it is continues to go unanswered because those who should be on the front lines of this battle still have their heads in the sand, thinking the families will follow suit.

Dr. Paul Offit continues to be put forward as a media spokesperson without his clear and obvious financial conflict of interest being provided each time. While presented tonight, it was only partially presented. Why was a Merck spokesperson not on this show? Because Merck pays Dr. Offitt to be their front-man. Additionally, he holds a patent on a vaccine, and other members of his family are involved in the field as well.

It would have been appropriate and informative for Matt Lauer to read or refer to the actual MMR Package insert http://www.merck.com/product/usa/pi_circulars/m/mmr_ii/mmr_ii_pi.pdf If he had, he could have noted in addition to admissions that MMR adverse reactions include arthritis and joint issues, diabetes, and two specific conditions that may answer the autism/MMR link: measles inclusion body encephalitis (MIBE) and subacute sclerosing panencephalitis…right there in the official MMR package insert, approved and required by the FDA…The other information includes:

 ADVERSE REACTIONS

The following adverse reactions are listed in decreasing order of severity, without regard to causality, within each body system category and have been reported during clinical trials, with use of the marketed vaccine, or with use of monovalent or bivalent vaccine containing measles, mumps, or rubella:

Body as a Whole
Panniculitis; atypical measles; fever; syncope; headache; dizziness; malaise; irritability.
Cardiovascular System
Vasculitis.
Digestive System
Pancreatitis; diarrhea; vomiting; parotitis; nausea.
Endocrine System
Diabetes mellitus. (who knew that MMR could cause diabetes?)
Hemic and Lymphatic System
Thrombocytopenia (see WARNINGS, Thrombocytopenia); purpura; regional lymphadenopathy;
leukocytosis.
Immune System
Anaphylaxis and anaphylactoid reactions have been reported as well as related phenomena such as
angioneurotic edema (including peripheral or facial edema) and bronchial spasm in individuals with or
without an allergic history.

Musculoskeletal System
Arthritis; arthralgia; myalgia.
Arthralgia and/or arthritis (usually transient and rarely chronic), and polyneuritis are features of
infection with wild-type rubella and vary in frequency and severity with age and sex, being greatest in
adult females and least in prepubertal children. This type of involvement as well as myalgia and
paresthesia, have also been reported following administration of MERUVAX II.

Chronic arthritis has been associated with wild-type rubella infection and has been related to
persistent virus and/or viral antigen isolated from body tissues. Only rarely have vaccine recipients
developed chronic joint symptoms.

Following vaccination in children, reactions in joints are uncommon and generally of brief duration. In
women, incidence rates for arthritis and arthralgia are generally higher than those seen in children
(children: 0-3%; women: 12-26%),17,52,53 and the reactions tend to be more marked and of longer
duration. Symptoms may persist for a matter of months or on rare occasions for years. In adolescent
girls, the reactions appear to be intermediate in incidence between those seen in children and in adult
women. Even in women older than 35 years, these reactions are generally well tolerated and rarely
interfere with normal activities.

Nervous System
Encephalitis; encephalopathy; measles inclusion body encephalitis (MIBE) (see CONTRAINDICATIONS); subacute sclerosing panencephalitis (SSPE); Guillain-Barré Syndrome (GBS); febrile convulsions; afebrile convulsions or seizures; ataxia; polyneuritis; polyneuropathy; ocular palsies; paresthesia.

Experience from more than 80 million doses of all live measles vaccines given in the U.S. through
1975 indicates that significant central nervous system reactions such as encephalitis and
encephalopathy, occurring within 30 days after vaccination, have been temporally associated with
measles vaccine very rarely.54 In no case has it been shown that reactions were actually caused by
vaccine. The Centers for Disease Control and Prevention has pointed out that “a certain number of cases
of encephalitis may be expected to occur in a large childhood population in a defined period of time even
when no vaccines are administered”. However, the data suggest the possibility that some of these cases

may have been caused by measles vaccines. The risk of such serious neurological disorders following
live measles virus vaccine administration remains far less than that for encephalitis and encephalopathy
with wild-type measles (one per two thousand reported cases).

CONTRAINDICATIONS
Hypersensitivity to any component of the vaccine, including gelatin.
Do not give M-M-R II to pregnant females; the possible effects of the vaccine on fetal development
are unknown at this time. If vaccination of postpubertal females is undertaken, pregnancy should be
avoided for three months following vaccination
Anaphylactic or anaphylactoid reactions to neomycin (each dose of reconstituted vaccine contains
approximately 25 mcg of neomycin).
Febrile respiratory illness or other active febrile infection.
Patients receiving immunosuppressive therapy. This contraindication does not apply to patients who
are receiving corticosteroids as replacement therapy, e.g., for Addison’s disease.
Individuals with blood dyscrasias, leukemia, lymphomas of any type, or other malignant neoplasms
affecting the bone marrow or lymphatic systems.
Primary and acquired immunodeficiency states, including patients who are immunosuppressed in
association with AIDS or other clinical manifestations of infection with human immunodeficiency
viruses;41-43 cellular immune deficiencies; and hypogammaglobulinemic and dysgammaglobulinemic
states. Measles inclusion body encephalitis60 (MIBE), pneumonitis and death as a direct consequence
of disseminated measles vaccine virus infection have been reported in immunocompromised individuals
inadvertently vaccinated with measles-containing vaccine.
Individuals with a family history of congenital or hereditary immunodeficiency, until the immune
competence of the potential vaccine recipient is demonstrated.

WARNINGS
Due caution should be employed in administration of M-M-R II to persons with a history of cerebral
injury, individual or family histories of convulsions, or any other condition in which stress due to fever
should be avoided. The physician should be alert to the temperature elevation which may occur following
vaccination (see ADVERSE REACTIONS).

Hypersensitivity to Eggs
Live measles vaccine and live mumps vaccine are produced in chick embryo cell culture. Persons with
a history of anaphylactic, anaphylactoid, or other immediate reactions (e.g., hives, swelling of the mouth
and throat, difficulty breathing, hypotension, or shock) subsequent to egg ingestion may be at an
enhanced risk of immediate-type hypersensitivity reactions after receiving vaccines containing traces of
chick embryo antigen. The potential risk to benefit ratio should be carefully evaluated before considering
vaccination in such cases. Such individuals may be vaccinated with extreme caution, having adequate
treatment on hand should a reaction occur

 Thrombocytopenia
Individuals with current thrombocytopenia may develop more severe thrombocytopenia following
vaccination. In addition, individuals who experienced thrombocytopenia with the first dose of M-M-R II (or
its component vaccines) may develop thrombocytopenia with repeat doses. Serologic status may be
evaluated to determine whether or not additional doses of vaccine are needed. The potential risk to
benefit ratio should be carefully evaluated before considering vaccination in such cases

 PRECAUTIONS
General:  Adequate treatment provisions including epinephrine injection (1:1000), should be available for
immediate use should an anaphylactic or anaphylactoid reaction occur.
Special care should be taken to ensure that the injection does not enter a blood vessel.
Children and young adults who are known to be infected with human immunodeficiency viruses and
are not immunosuppressed may be vaccinated. However, vaccinees who are infected with HIV should be
monitored closely for vaccine-preventable diseases because immunization may be less effective than for
uninfected persons

Vaccination should be deferred for 3 months or longer following blood or plasma transfusions, or
administration of immune globulin (human).

Excretion of small amounts of the live attenuated rubella virus from the nose or throat has occurred in
the majority of susceptible individuals 7 to 28 days after vaccination. There is no confirmed evidence to
indicate that such virus is transmitted to susceptible persons who are in contact with the vaccinated
individuals. Consequently, transmission through close personal contact, while accepted as a theoretical
possibility, is not regarded as a significant risk. However, transmission of the rubella vaccine virus to
infants via breast milk has been documented (see Nursing Mothers).
There are no reports of transmission of live attenuated measles or mumps viruses from vaccinees to
susceptible contacts.

It has been reported that live attenuated measles, mumps and rubella virus vaccines given individually
may result in a temporary depression of tuberculin skin sensitivity. Therefore, if a tuberculin test is to be
done, it should be administered either before or simultaneously with M-M-R II.

Children under treatment for tuberculosis have not experienced exacerbation of the disease when
immunized with live measles virus vaccine; no studies have been reported to date of the effect of
measles virus vaccines on untreated tuberculous children. However, individuals with active untreated
tuberculosis should not be vaccinated.
As for any vaccine, vaccination with M-M-R II may not result in protection in 100% of vaccinees.
The health-care provider should determine the current health status and previous vaccination history
of the vaccinee.
The health-care provider should question the patient, parent, or guardian about reactions to a previous
dose of M-M-R II or other measles-, mumps-, or rubella-containing vaccines.

 Information for Patients
The health-care provider should provide the vaccine information required to be given with each
vaccination to the patient, parent, or guardian.

The health-care provider should inform the patient, parent, or guardian of the benefits and risks
associated with vaccination. For risks associated with vaccination see WARNINGS, PRECAUTIONS,

ADVERSE REACTIONS.
Patients, parents, or guardians should be instructed to report any serious adverse reactions to their
health-care provider who in turn should report such events to the U.S. Department of Health and Human
Services through the Vaccine Adverse Event Reporting System (VAERS), 1-800-822-7967.47

 Immune Globulin
Administration of immune globulins concurrently with M-M-R II may interfere with the expected
immune response.

 Carcinogenesis, Mutagenesis, Impairment of Fertility
M-M-R II has not been evaluated for carcinogenic or mutagenic potential, or potential to impair fertility.

Pregnancy
Pregnancy Category C

Animal reproduction studies have not been conducted with M-M-R II. It is also not known whether
M-M-R II can cause fetal harm when administered to a pregnant woman or can affect reproduction
capacity. Therefore, the vaccine should not be administered to pregnant females; furthermore, pregnancy
should be avoided for 3 months following vaccination

In counseling women who are inadvertently vaccinated when pregnant or who become pregnant
within 3 months of vaccination, the physician should be aware of the following: (1) In a 10-year survey
involving over 700 pregnant women who received rubella vaccine within 3 months before or after
conception (of whom 189 received the Wistar RA 27/3 strain), none of the newborns had abnormalities
compatible with congenital rubella syndrome;48 (2) Mumps infection during the first trimester of pregnancy
may increase the rate of spontaneous abortion. Although mumps vaccine virus has been shown to infect
the placenta and fetus, there is no evidence that it causes congenital malformations in humans; and
(3) Reports have indicated that contracting wild-type measles during pregnancy enhances fetal risk.
Increased rates of spontaneous abortion, stillbirth, congenital defects and prematurity have been
observed subsequent to infection with wild-type measles during pregnancy. There are no adequate
studies of the attenuated (vaccine) strain of measles virus in pregnancy. However, it would be prudent to
assume that the vaccine strain of virus is also capable of inducing adverse fetal effects.

Nursing Mothers
It is not known whether measles or mumps vaccine virus is secreted in human milk. Recent studies
have shown that lactating postpartum women immunized with live attenuated rubella vaccine may secrete
the virus in breast milk and transmit it to breast-fed infants. In the infants with serological evidence of
rubella infection, none exhibited severe disease; however, one exhibited mild clinical illness typical of
acquired rubella.50,51 Caution should be exercised when M-M-R II is administered to a nursing woman.

Pediatric Use
Safety and effectiveness of measles vaccine in infants below the age of 6 months have not been
established (see also CLINICAL PHARMACOLOGY). Safety and effectiveness of mumps and rubella
vaccine in infants less than 12 months of age have not been established.

 Geriatric Use
Clinical studies of M-M-R II did not include sufficient numbers of seronegative subjects aged 65 and
over to determine whether they respond differently from younger subjects. Other reported clinical
experience has not identified differences in responses between the elderly and younger subjects.

Post-marketing surveillance of the more than 200 million doses of M-M-R and M-M-R II that have
been distributed worldwide over 25 years (1971 to 1996) indicates that serious adverse events such as
encephalitis and encephalopathy continue to be rarely reported.17

There have been reports of subacute sclerosing panencephalitis (SSPE) in children who did not have
a history of infection with wild-type measles but did receive measles vaccine. Some of these cases may
have resulted from unrecognized measles in the first year of life or possibly from the measles vaccination.
Based on estimated nationwide measles vaccine distribution, the association of SSPE cases to measles
vaccination is about one case per million vaccine doses distributed. This is far less than the association
with infection with wild-type measles, 6-22 cases of SSPE per million cases of measles. The results of a
retrospective case-controlled study conducted by the Centers for Disease Control and Prevention
suggest that the overall effect of measles vaccine has been to protect against SSPE by preventing
measles with its inherent higher risk of SSPE.55

Cases of aseptic meningitis have been reported to VAERS following measles, mumps, and rubella
vaccination. Although a causal relationship between the Urabe strain of mumps vaccine and aseptic
meningitis has been shown, there is no evidence to link Jeryl Lynn™ mumps vaccine to aseptic
meningitis.

Respiratory System
Pneumonia, pneumonitis (see CONTRAINDICATIONS); sore throat; cough; rhinitis.
Skin
Stevens-Johnson syndrome; erythema multiforme; urticaria; rash; measles-like rash; pruritis.
Local reactions including burning/stinging at injection site; wheal and flare; redness (erythema);
swelling; induration; tenderness; vesiculation at injection site.
Special Senses — Ear
Nerve deafness; otitis media.
Special Senses — Eye
Retinitis; optic neuritis; papillitis; retrobulbar neuritis; conjunctivitis.
Urogenital System
Epididymitis, orchitis.

Other
Death from various, and in some cases unknown, causes has been reported rarely following
vaccination with measles, mumps, and rubella vaccines; however, a causal relationship has not been
established in healthy individuals (see CONTRAINDICATIONS). No deaths or permanent sequelae were
reported in a published post-marketing surveillance study in Finland involving 1.5 million children and
adults who were vaccinated with M-M-R II during 1982 to 1993.56

Under the National Childhood Vaccine Injury Act of 1986, health-care providers and manufacturers
are required to record and report certain suspected adverse events occurring within specific time periods
after vaccination. However, the U.S. Department of Health and Human Services (DHHS) has established
a Vaccine Adverse Event Reporting System (VAERS) which will accept all reports of suspected events.47
A VAERS report form as well as information regarding reporting requirements can be obtained by calling
VAERS 1-800-822-7967.
At the end of the day, the general public got to see for themselves how very logical,ethical, and compassionate Dr.Wakefield is. I believe he deserves the Nobel Prize in Medicine for the discovery of a link between irritable bowel and the onset of symptoms of autism. And not unlike many doctors who have preceded him in the history of great evolutions in scientific knowledge, (Lister, Marshall, etc.) he has been vilified by his colleagues who have been too closed-minded (or too financially and philosophically invested in vaccine policies) to see what the clinical research shows.

Beth Clay

This article was previously posted.