Vol. 103 December 15, 2013 Autism and Asperger’s and ASD…Oh, My!

December 15, 2013

hub“What’s in a name? That which we call a rose by any other name
would smell as sweet.”
– William Shakespeare

“Medicine gives a Latin name or a person’s name to any disease
we don’t understand or can’t cure.”
– anonymous

What IS in a name?
Can be a lot. The most recent classification of diagnoses that physicians can bill for and that the insurance companies will pay for has deleted the “name” Asperger’s Syndrome. Children with Asperger’s syndrome are now lumped into the new diagnostic category of Autism Spectrum Disorder (ASD).

So what?
Parents of Asperger children could lose insurance benefits now tied to that diagnosis. Grant-supported educational and enrichment programs for Asperger’s may dry up. Asperger’s has always been a less terrifying diagnosis than autism.  People with Asperger’s, and probably more important, their parents, don’t want to be labeled with the stigmata of “autistic”.

In the 1940s Dr. Asperger and Dr. Kanner separately described a clinical syndrome characterized by inability to interact with others. absent speech, and poor physical coordination. They both called it autism. Both were Austrian, but Kanner had emigrated to Baltimore and his work helped popularized the term. Dr. Asperger’s autism became known by his name because many of his patients were so-called “higher-functioning autistic”. They might lack empathy, be clumsy, and have unusual behavior, but were often verbally competent and even superior in non-verbal areas.

As both terms became more widespread in the 1990’s, other names like Pervasive Development Delay (PDD)  were applied to some children who were not “quite autistic”. Oliver Sacks, MD in his book,  An Anthropologist On Mars, gives detailed descriptions of his own 1990‘s world-wide travels in search of a personal understanding of savants, prodigies, and autism.

It is not an urban myth that Asperger’s patients have graduated from MIT.  Dan Akroyd and Daryl Hannah  have just self-proclaimed their Asperger’s. Richard Branson, founder of Virgin Airlines, and about 499 other companies, has been called an Asperger though he is probably “just” a severe dyslexic. (Oops, another diagnosis to be distinguished from autism).

Confusion about these syndromes  increased in the 2000’s as screening tools improved and awareness of the syndromes grew.  The authors of the 2013 Diagnostic and Statistical Manual of Mental Disorders (DSM-5) , the bible of insurance company reimbursement, attempted to simplify and clarify the situation by lumping all the diagnostic names into one billing code, “Autism Spectrum Disorder” (ASD).

The attempt has not succeeded according to its critics and many practicing physicians. For example, one pediatric practice had trouble coining a name for its new support group for parents of autism spectrum disorder children. “ASD” was already understood as “atrial septum defect”, and nobody wanted to fool with those cardiologists. After much discussion they decided to call it a “NOS group”. “NOS” stands for “Not Otherwise Specified”, a reimbursable billing code that physicians submit to insurance companies as a last-resort diagnosis when what the patient has doesn’t fit into any other category. Hopefully such a support group would have room for the parents of both Rain Man and Susan Boyle, of “Britain’s Got Talent” and YouTube fame.

The number of diagnostic names for autistic children is clearly surpassed by the number of its suggested treatments.

 Maybe they just need a little loving…or at least some oxytocin
Oxytocin is considered the “love hormone”. Raising its blood levels makes people more sociable, even more affectionate. At Yale, researchers squirted oxytocin mist into the noses of 17 autistic spectrum children and watched the “social part” of their brains light up on functional MRI when they looked at pictures of people’s eyes. The social part of the brain did NOT light up when they looked at a picture of a truck. It is a  l-o-n-g  way from lighting up part of a brain to actually changing behavior, so researchers are cautious about applying their results, but this story is all over the ASD websites  and in the popular press. 

Maybe the right germs can help
Researchers recently reduced “autistic behaviors” in mice with “leaky guts” by feeding them some bacteria found in a healthy human gut. This significantly reduced the mice’s “autism-like” behaviors as well as the leakiness of their intestines. “The research adds to growing evidence of a gut-brain connection in autism spectrum disorder (ASD)”  This, of course, leads to speculation about the potential role of probiotics in the treatment of autism. Another study suggests that instilling parasitic worm eggs into the gut to change the flora and mimic inflammation might help!

Current Bottom Line
We do know that early intervention with appropriate remedial educational and behavior modification techniques helps ASD children to successfully function, so we have lots to do while these far-out experimental treatments get evaluated.

1. Olivier Sacks, MD, An Anthropologist on Mars: Seven Paradoxical Tales, 1995, chapter on Prodigies

Vol. 48 July 15, 2011 Worry Globally, Act Locally.

July 15, 2011

“What, me worry? ”          –  Alfred E. Neuman 1959

Yesterday I did something about all the worries I have.

What worries?

1.Debt to China – Our stock market had an up-tick today because the China economy improved more than expected this past quarter.
2.Debt ceiling – My children and grandchildren are already in hock up to their eyeballs, and their grandfather doesn’t want his Medicare benefits cut.
3.Medicare fraud – CMS has hired only 41 of 649 needed analysts needed to implement their new anti-fraud computer programs that cost $130 million plus. Why can’t Medicare be like Visa or Capital One. Capital One just announced a 50% increase in their profit this quarter, so I don’t worry about them.
4.Netflix just raised their prices by 60%!
5.My next colonoscopy?  When? Two years, five years, when the gastroenterologist sends me a reminder letter, or never? At least I don’t have to worry about when to get a mammogram!
6.I am over one PSA screening age threshold according to some studies, so I don’t worry about that anymore, … though my internist thinks differently. Maybe I should worry about which study of PSA screening is right for my prostate.
7.Bears! No, no that is Steven Colbert’s worry, not mine.
8.Why does autism seem to be increasing despite our country’s declining immunization rate? They must NOT be related.
9.How come I can’t find the time to do all the things I want to now that I am retired? How did I miss writing my blog for July 1? Did anybody notice? I worry that it may be related to the decreasing energy of increasing age.
10.Global “weirding”, previously known as global warming, now includes droughts, floods, unexpected tornadoes, and severe winters or melting ice depending on your geography and it all makes me worry about my environment.

 This is the worry I did something about.

Yesterday I collected five water samples from Buzzards Bay. I keep my boat on Buzzards Bay.

Samples from the bay have been collected for the past twenty years by over 700 volunteers from the Buzzards Bay Coalition. The samples reveal increasing amounts of nitrogen and phosphorous and other compounds that are earmarks of “pollution”. I felt that volunteering would be a concrete way to contribute to pollution solutions, other than “dilution”.

The sampling was more complex than I thought,and it took the better part of a day. It was 90 degrees with a honking wind out on the bay. There are other steps I take to combat the deterioration of our environmental, but I felt particularly good about this concrete contribution to a local effort. Attending a public hearing about the pros and cons of wind turbines would not have been nearly as satisfying.

Vol. 37 January 15, 2011 Let’s Call A Quack a “Quack”

January 14, 2011

“Since the introduction of the first vaccine, there has been opposition to vaccination…Since the 18th century, fear and mistrust have arisen every time a new vaccine has been introduced.Ultimately, society must recognize that science is not a democracy in which the side with the most votesor the loudest voices gets to decide what is right.”
– The Age-Old Struggle against the Antivaccinationists, Poland and Jacobson, NEJM 1/13/11, p.97

It is time to call a Quack a Quack! Dr.. Andrew Wakefield’s bad science suggesting a link between measles vaccination and autism has been revealed to be also fraudulent! Besides faking and altering data on the 12 (yes, only twelve) patients in his original report, Dr. Wakefield received close to $643,000 for helping lawyers sue pharmaceutical companies working on rival vaccines. “Quackery” is usually defined as selling for profit a medical notion, or lotion, whose benefits are not supported by reason or knowledge.

The U.K. Grand Medical Council has “erased” his name from the medical register. This is the same as stripping him of his medical license, and don’t you just love the British for describing it as an “erasure”. In another quaint British linguistic quirk the act of actually administering the vaccine was often called a “jab”, and so the proponents of giving the vaccine were labeled as “The Jabbers”. The charges and counter charges can get a bit murky, but this several minute annotated video of Dr. Wakefield’s own statement clarifies the issues very well.  Dr. Wakefield currently resides in Texas continuing to attract desperate parents with autistic children, but does not have a U.S. medical license.

It seems incredible to me that his assertions based on 12 patients has stood up for so long in the face of several studies of thousands of children in different countries, numerous peer reviews, and, even, a U.S. federal court decision debunking the connection between measles vaccine and autism. Will this new revelation of false data and fraud quench the voices of superstition?

I doubt it. A recently published book, The Panic Virus by Seth Mnookin explores the reasons this particular superstition has persisted.  His list includes (1) :

1.the democratization of information via the Internet,
2.Americans’ negative response against anything “perceived as infringing on individual liberty”,
3. skepticism of the medical establishment,
4. shoddy shock-seeking journalism,
5. the romance of lone-wolf skeptics tilting against establishment windmills,
6. the development of a sense of community among anti-vaccine activists,
7.journalism that not only tolerated misinformation but also validated “the notion that our feelings are a more reliable barometer of reality than the facts.”

Quackery, of course, existed and thrived a long time before the Internet, before America, before journalism, and even before the establishment of a “medical establishment” though that it is what actually defined it, so this contemporary list fails to fully explain the phenomenon. Professor Michael Shermer, editor of Skeptic Magazine, lists 25 fallacies that lead us to believe weird things (2). Michael Barrett MD explains in detail how quackery sells.

People who continue to rail against MMR vaccinations due to the fear of autism are no longer quaint nor merely superstitious. They should be called “quacks”. They put hundreds of children, and themselves as young adults having their own children, needlessly at risk of a preventable disease with serious complications..

1. The Panic Virus: A True Story of Medicine, Science, and Fear, Seth Mnookin, Simon & Schuster , 2010
2. Why People Believe Weird Things, Michael Shermer, 1997

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