Autism Immunity, Whip Worms and More Mischief

Latest Autism News

You probably read or heard about the lead Op Ed article in the New York Times a week or two ago by Velasquez-Manoff claiming there is strong evidence autism is an immune disorder. Not so much.  There is actually very little evidence to support this idea despite many, many years of efforts by many researchers to find a clear connection. The author is an environmental activist journalist with no background in autism or immune disorders. He is trying to sell a book which will probably be a real hit with the anti-immunization crowd.  He makes all kinds of unsubstantiated claims, such as there is no autism in Cambodia, apparently due to endemic whip worms, and that 1/3 of cases of autism are caused by intrauterine infections. Yet one more magical mystery cure.  Shoddy science journalism.  See http://www. travisithompson.net for my commentary “More Autism Mischief:  From Auto-Immune Disorder Whip Worms.”

I just learned that my book, Dr. Thompson’s Straight Talk on Autism has been translated into Portuguese an is being published in Brazil by Papirus Editora under the mixed title, “Straight Talk Dr. Thompson sobre o Autismo.” Apparently “straight talk” has no Portuguese equivalent. Many thanks to my Publisher Paul H. Brookes and my Brazilian colleagues!  Here’s the link to the English version. 

Quick Tips

It’s important to decide upon a strategy for your child’s intervention, make a commitment to stick with it.  Evidence shows the best predictors of positive outcomes of early behavioral intervention are partially child and partially parent characteristics.  Children with some speech, imitation and social interest, and parents who have made a clear commitment to an approach for their child and persist, tend to yield the best child outcomes. (Grindle, Koshov, et.al. 2009)

Random Thoughts

Every time a phony cure for autism is proposed and is exposed for what it is, phony, it feeds the misimpression that very little is actually known about autism and that little progress has been made.  In 1972 psychiatrist William C. Dement conducted a follow up study showing that only 1-2% of a large group of children with autism grow up to function within the typical range without treatment, putting forever an end to the idea children “outgrow” autism with good parenting.  Because of Early Intensive Behavioral Intervention, which has grown out of applied behavior analysis research, about half of young children with autism diagnoses now are able to function in or near the typical range after 2-3 years of treatment.  Compared with the rate of progress in finding the causes and effective treatments for cancer and heart disease, progress has been made far more rapidly in understanding and treating autism.

What I'm Up To

Logan Hall, University of New Mexico

I just returned from a visit the Psychology Department at the University of New Mexico in Aluqueque, where I presented the Frank A. Logan Quad-L Award lecture “Autism Early Intervention and Brain Development.”  The audience seemed to find my thoughts about the causes and treatment of autism thought provoking, and some even found them compelling.  I met some terrific honors undergraduate and grad students, and wonderful faculty members, Randi Fink, Derek Hendry, Karin Butler, Kevin Vowles and Ronald Yeo, all doing fascinating work from spousal abuse, to mechanisms underlying alcoholism, to pain management and genetics of schizophrenia.  An unexpected “side-benefit” of my visit was that I Iearned Black bears come down from the nearby Sandia Mountains this time of year to begin fattening up for the winter.  One was captured near a mall in nearby Santa Fe a week or so ago.  When I was out and about in Albuqueque, I admit, kept a slightly wary eye out for the big fellas, just in case they had a hankering for a midwestern psychologist.  Thanks to all for a great visit. 

Quote of the Week: 

C. S. Pierce, the first experimental psychologist and philosopher, who was born Sept 10, 1839 said it concisely, “There is one thing even more vital to science than intelligent methods; and that is, the sincere desire to find out the truth, whatever it may be.”

Pragmatism as a Principle and Method of Right Thinking (1997), 266.

Grindle, Corinna F., Kovshoff, Hanna, Hastings, Richard P. and Remington, Bob (2009) Parents’ experiences of home-based applied behavior analysis programs for young children with autism. Journal of Autism and Developmental Disorders, 39, (1), 42-56. (doi:10.1007/s10803-008-0597-z)

Grindle, C.F., Kovshoff, H., Hastings, R. and Remington, R.E. (2009) Parents experiences of home-based applied behaviour analysis programs for young children with autism. Journal of Autism and Developmental Disorders, 39(doi:10.1007/s10803-008-0597-z)

Brits React to Anti-Immunization Web Site

• Latest autism news

An article in the British medical journal BMJ just reported that… “A website that offers parents information about childhood immunisation has been told to remove claims that the measles, mumps, and rubella (MMR) vaccine could be causing autism in some children, as they were misleading. The UK Advertising Standards Authority ruled that this and other claims on the BabyJabs website (www.babyjabs.co.uk) breached the code of the advertising industry body the Committee of Advertising Practice, which was designed to ensure that advertising did not mislead or harm consumers. The claims must not appear again, it said.”

The article goes on to explain the website and other information intended for physicians. Mayor, S. (2012) Advertising watchdog orders website to remove claims linking MMR vaccine with autism. : BMJ 2012;345:e5420

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• Quick Tips

What to do about school this Fall?   Tough decision.  Most kids with ASDs can profit from participating in public school programs if school personnel are trained and open to working with parents.  Many children do better if they receive 1-3 years of home-based intensive early behavioral intervention first to teach them school-readiness skills like sitting and listening to the teacher, following verbal directions and appropriately interacting with peers.  In our study we found 2/3rds of our kids were successfully placed in regular education after receiving early behavioral intervention and 1/3 were in special ed classes for kids with autism.  Of the kids in regular education, most required no supplementary services but some had part time support from paraprofessional aides.

• Random Thoughts

I’d like to hear Romney’s and Obama’s thoughts on services to children with disabilities and autism in particular.  Sounds as though the Romney-Ryan camp are going to push for privatizing education which could mean schools would pick and choose which students to serve.  Obama signed the reauthorization of the Combating Autism Act originally signed by George W. Bush,  that includes important provisions on surveillance, training and treatment, but still leaves the issue of health insurance coverage for early autism services up in the air.

• What I'm Up To

Just returned from speaking at the White Earth Reservation Community Cooperative Conference on Children’s Brain Development.  Among other speakers were Jack Shonkoff from Harvard and Art Rolnick, an economist who specializes in finding ways of funding children’s initiatives and analyzing their pay-offs.  I spoke on “Freedom from Meltdowns” and “Autism Early Intervention and Brain Development.” Around 800 people attended the conference.  White Earth Reservation is 240 miles north of Minneapolis, MN.

•  Quote of the Week

“There is only one cardinal rule: One must always listen to the patient.”  Oliver Sacks in an interview with Walter Clemons, 'Listening to the Lost', Newsweek (20 Aug 1984). Author of “An Anthropologist on Mars.”

Oughtism on Autism

For regular readers of my Oughtism blog, in the future it will be divided into two separate blogs, one mainly for parents, teachers and other practitioners interested specifically in autism, OUGHTISM and the other will discuss a wider range of issues at greater length as in my previous blog OUGHTISM TWO.  For those with greater tolerance for windy commentaries. Older posts will be found on the OUGHTISM blog link. 

OUGHTISM on AUTISM

• Latest autism news

Lynn. & Bob Koegel from UC Santa Barbara just reported results of study showing organizing social activities of teens with autism around some of their narrow interests works better in promoting friendships with typical peers than trying to redirect them into other pursuits. Rather than discouraging their occasionally-obsessive interests, the researchers helped set up social clubs around them and invited students who do not have ASD to join.   Makes a lot of sense.  Appears In the latest issue of Journal of Positive Behavioral Interventions. 

• Quick Tips

"She's just going to have to get used to it!"   How many times have you heard that?  Most of the time when we expose kids with ASDs to highly frustrating or frightening situations, that leads to an outburst, and eventually, parents, teachers or grandma finally give in....  Few adults are able to tolerate a prolonged meltdown without blowing a gasket. They are usually the one’s who “get used to it.”  It’s better to figure out what is behind the outburst and how to make it unnecessary by teaching the child to ask for help, by making the task easier or perhaps temporarily allowing the child to leave the situation. Kids with autism over react for reasons, we just have to figure out what they are. Choosing an alternative behavior pathway is always preferable (see Chapter 5, Overcoming Behavioral Tsunamis in my Freedom fromMeltdowns). 

• Random Thoughts

Among the 88 books appearing on the list the Libraryof Congress has decided shaped America, the three science-related choices seem strange:  Benjamin Franklin's treatise on electricity, while historically interested influenced few scientists, and The "Silent Spring" is about science run amuck driven by commercial interests.  Only "The Double Helix" was a celebration of the contribution of science.  Considering our world as it is today, from astronomy to medicine, that seems an oversight. Where was Primo Levi’s The Periodic Table, E.O. Wilson’s On Human Nature or Lewis Thomas’s remarkable Lives of a Cell ?   Perhaps it reflects the continuing schism between the humanities and sciences of which C.P. Snow persuasively wrote many years ago in "Two Cultures" 1959).  

• What I'm Up To

On August 7^th I’ll be delivering a keynote address "Melt Downs: What Causes Them and How To Prevent them" at the Community Collaborative, Brain and Development Conference, White Earth Reservation, Mahnomen, MN. 

I’ll be in Albuquerque NM September 6th presenting the invited Frank Logan Quad-L Lecture at the Department of Psychology, University of New Mexico on Autism Early Intervention and Brain Development.

I’ve been adding to my succulent garden. Daughters Andrea and Jennifer gave me a wonderful Assago Bonsai Palm and an unusual meandering Crassula for my birthday.  They remind me things may seem a little off kilter and still be beautiful.

Cut Who's Entitlements, Who Decides?

Bill Kessler’s Article “The EntitltedGeneration” in the NY Times poses thought provoking issues regarding “entitlements.”  The root of opposition to cuts in Social Security, Medicare and Medicaid entitlements is growth of the proportion of the population that qualifies and needs such services, combined with the overall gross inequities in other entitlements in our economy.  Republicans have opposed these programs since Roosevelt and Johnson first introduced them. They voted against them in 1965 when the Social Security Act went into law.  They have said no such “entitlements” should exist, while defending their own entitlements (which is legally the correct term) in the form of extensive tax deductions, credits, deferrals and avoidance through tax shelters.  Despite the shortcomings of Kessler's article, he is correct that there are problems with the growth of these programs that must be addressed. 

A first major problem is that wealthy people generally do not need Social Security benefits, Medicare or Medicaid.  That has to stop. Where there are specific exceptions, such as people with life time severe disabling conditions, there can be exceptions but those are the exceptions not the rule.

Policy wonks like to talk in very big picture, broad stroke terms, like percent of GDP and statistical ratios, but as the 19^th century German poet Heinrich Heine, aptly noted, that, “You cannot feed the hungry on statistics.”   

The reality is that most of the solutions are not in denying sick or disabled people essential services, it is in eliminating overbilling, duplication and waste within the services delivered and eliminating services with no measurable benefit.  Policy wonks have a penchant for denying people services, while people in the trenches like me, prefer finding out what is working well and what isn’t and fixing them.  Let's have a go at that. 

Many of the problems stem from piling-on and conflict of interest by health care providers, and proliferation of ineffective “treatments” which are billed routinely to Medicare and Medicaid.

There is a very long list of so-called "treatments" that are routinely paid for by Medicare and other private health insurances that have no objectively demonstrated benefit whatsoever. None, nada.  If a person decides they wish to have such treatments, right now Medicare nearly always pays for them whether they do any good or not.  If people want magic, they should pay for it themselves. 

Secondly, the medical billing system is inherently corrupt. It designed by physicians to benefit physicians and hospitals.  Doctors have sliced and diced every conceivable medical service into ever smaller pieces, so each slice can be billed separately so the sum is far more than the original total item billed.  What used to be a single service is now five or six services, each with a price tag.  There are currently around 9,000 medical billing codes, which could easily reduced by half.  Secondly, there is an enormous conflict of interest between physicians making referrals and laboratories or specialized testing and treatment centers in which they are part owners.   There is far too much incentive to refer their patients for testing or treatments at facilities that benefit them. This has to stop.

Here are a few suggestions.

1.     Anyone not paying taxes because of use of tax shelters should be exempt from receiving Social Security, Medicare and Medicaid. Zero, none, no exceptions.  If you have money in Grand Cayman or Switzerland don't ask the American people for a hand out.  If you're not willing to pay into the system, you're on you're own. 

2.     People with annual retirement income through the date of their estimated deaths of greater than $500,000 per couple should be precluded from collecting Social Security benefits. They don't need them. 

3.     People with annual retirement income greater than $500,000 per couple should be required to pay significant graduated Medicare co-pays proportional to their annual retirement income. The more your retirement income, the more your co-pay for each service.

4.     Age for Social Security benefits should be gradually raised to 70 years over a 10-year period with the exception of people with significant medically diagnosed disabilities or disorders. Roosevelt and Johnson did not anticipate people living relatively healthy lives as long as they do today.  

5.     Medical health insurance billing is completely out of control. The notion that for profit private insurance companies can be more efficient and save money is a complete sham.  Medical health insurance billing should be managed by a private non-profit agency not connected with any insurance company contracted through the US Department of Health and Human Services.  There is an inherent conflict of interest in allowing insurance companies to control access to medical services.  Such an independent non-profit organization should be subject to monitoring and review by an oversight group consisting of health care, governmental, insurance industry and private health advocacy groups. Please don't bother me with your whining about government inefficiency.  The administrative cost of the IRS is 4 tenths of one percent and 93% accuracy,  and of Social Security administrative cost is from 0.6% to 2.3% depending on the program. Show me a private company with such low administrative cost. 

6.     The American Medical Association Current Procedure Terminology (CPT) medical insurance billing code system used to determine what medical services will be paid for by insurance of Medicare, is inherently steeped in conflict of interest.   It should be totally revamped and managed by an independent non-profit organization with representatives of medical and allied health specialities, federal health agencies and non-profit health advocacy groups.  Physicians and other health professionals directly benefitting from such billing codes should not have final say in approving or disapproving of billing codes.  The current CPT system is designed to benefit medical sub-specialities promoting the proliferation of billable procedures and precluding inclusion of other effective procedures that may not benefit their professions.

7.     Physician practice groups should be prohibited from owning a controlling a share in medical services such as pathology laboratories, radiology facilities, pharmacies, specialty health stores (e.g. rehabilitation equipment, sleep stores), or other testing facilities to which physicians may refer patients, to avoid conflict of interest.

8.     Reimbursement for interventions for which there is inadequate objective evidence of their effectiveness for any condition or illness, should be prohibited. See Special Committee on Questionable and Deceptive Health Care Practices; Federation of State Medical Boards of the United States, Inc. http://www.fsmb.org/pdf/1997_grpol_Deceptive_Health_Care_Practices.pdf  and QuackWatch , scroll to Questionable Products, Services, and Theories.

9.     Allocation of Medicaid Waiver funds by state or county agencies for services to appropriately qualified individuals, but for which objective evidence of benefit can NOT be shown, should be prohibited. These funds are used by people with chronic disabilities to supplement typical medical services, but are grossly misused by some. Your hair would stand on end of you saw some of the stuff people buy with Waiver money.  Currently Social Workers employed by county agencies decide whether requested services are eligible for Waiver reimbursement, and generally have no idea whether they have any benefit.  Decisions are idiosyncratic and often irrational.

10.  Physicians and other licensed health providers should be prohibited from owning a significant share of any medical or rehabilitative residential treatment facility (e.g. Alzherimer’s, substance abuse, psychiatric) to which those physicians or their practice partners refer patients for care and treatment, to avoid conflict of interest.

11.  Use of costly medical equipment such as MRI scanners, proton beam cancer treatment devices, etc. should be coordinated regionally by groups of referring physicians and hospitals, rather than a competitive fee-for-service model which encourages each hospital and clinic to develop it's own facilities. Once a hammer has been created, far too many patients become nails.  The current system promotes over-utilization.  Physicians making such referrals should not be permitted to own shares in the devices to which they refer patients for testing or treatment.

12.  The most costly medical procedures should be carefully evaluated by independent groups of medical specialists and treatment research evaluators to determine the relative benefits, risks and costs, as well as possible less expensive alternatives. These procedures have frequent costly complications and pose quality of life questions, especially among older patients.  In some cases they may be deemed essential and life sustaining and others a matter of choice.  Among the most costly services are heart, liver, lung, pancreas and kidney transplants.  These surgical procedures are done in critically ill patients.  The quality of life and survivability in patients nearing the end of life who undergo such procedures are not inconsequential issues.

Any discussion of entitlements will go nowhere until there is equity in what is defined as an entitlement.  

A Pathetic Government Failure: Out of Control Gun Violence in America

Last weekend Mayor Steve Hogan of Aurora, Colorado was asked about the need for better gun laws in the wake of the murderous rampage in his city.  He pathetically replied that the perpetrator would have used bombs if there had been no guns. In other words, guns were not the problems.  I suppose if the perpetrator hadn’t been able to make bombs, he would have personally strangled all twelve people and stabbed the other 58 with his Swiss Army Knife.  That might have required more time and effort than the few minutes during which he shot his 870 Remington 12-gauge shotgun, for which he purchased 300 bullets and shot, Glock handgun and AR-15 assault rifle, another 300 bullets.  Michelle Bachmann thoughtfully says her AR-15 is her favorite rifle, which is really terrific news.

 Numerous indicators provide evidence the United States is becoming incapable of managing its own affairs as a democratic constitutional sovereign government, as argued by Naom Chomsky in his book Failed States.   One index of deterioration of our democracy is the control over the nation by the gun and ammunition industry which is represented by the NRA.  The National Rifle Organization is capable of defeating any elected official who proposes nearly any form of gun regulation.  

The Orwellian term “firearms” was invented to avoid having to refer to “guns” because the latter term includes killing weapons owned by the bad guys, and the NRA wants us to think of “firearms” as only being owned by hunters and police officers.  Firearms=Good, Guns=Bad   They are the same thing. Guns and firearms are designed to kill people. The NRA also prefers using the term “rounds” to “bullets.”  Rounds=Good, Bullets=Bad   The military and police officers refer to “rounds,” which is a euphemism for bullets.  If one looks up “round” in the dictionary, one discover a round is a single drink all around, or a rung of a chair, or a cut of beef.  One must read down to the 10^th definition to find “round” referring to a single shot or bullet.  The bullets shot from guns kill people. A very small proportion of bullets or shot from guns can also be used to shoot deer or grouse... a very small percentage of all guns and ammunition. 

Elected members of the US Congress and the presidents of the United States literally cower, whimper and grovel at the feet of the gun and ammunition industry, unable to do anything to control the unconscionable distribution, sale and transfer of lethal killing instruments to anyone in the country who wants one, or two or ten.  It is an utterly appalling spectacle seeing elected officials defending private ownership of automatic weapons that are routinely used to kill thousands of people in their own cities and states, for which they have legal responsibility. They apparently feel insufficient shame to act like responsible human beings.  In 2007 there were 12,632 gun homicide deaths in the US. I’m not sure how many strangulations or paring knife murders there were in the US, probably less.  

Though the NRA’s public argument favoring gun sales to ordinary citizens is formulated as a Second Amendment Constitutional issue, there is nothing in the US Constitution suggesting ordinary, untrained and unregulated individuals should own weapons of mass destruction, such as automatic weapons capable to shooting 60 bullets per minute.  The ratified Second Constitutional Amendment reads: “A well regulated militia being necessary to the security of a free state, the right of the people to keep and bear arms shall not be infringed.”  Note that there are two provisions, “a well regulated militia” and “the right of people to keep and bear arms shall not be infringed.”  The NRA often quotes the second provision but never mentions the first, i.e. “well regulated militia.”  The young man in Aurora who killed 15 and maimed 58 more was not a well regulated militia, at least as nearly as one could tell, unless it was a very small militia.  

Contrary to the political advertising, this is really all about money not the Second Amendment, i.e. the gun industry. The industry, includes over 180 companies, has a payroll of over 10,000 employees who are paid $400 million, and selling approximately $35 billion in guns and ammunition.  By comparison the US Postal Service employs over 574,000 workers, and congress pays virtually no attention to their views.  There are over 250,000 people employed in the computer industry, and Congress seldom falls to its feet in reverence to them as it does the NRA.  The NRA buys elections for Republicans and can defeat any Democrat who opposes them, so Congress rolls over and plays dead as the NRA drives by in their shiny black Caddy's.  Just as quail flutter around in circles and flap their wings to draw attention away from their nest when a predator approaches, Congress people flutterer making whimpering vocalizations while pointing at their fellow Congress people claiming they are pro-gun control, so as to divert attention from then when the NRA approaches.  Congress, which is supposed to represent the American people is unwilling to act in the people’s best interest in this life and death matter. It is utterly shameful .
 

Lots of Americans have been convinced that handguns are really swell, like a chicken in every pot. They really do.  Not long ago lots of Americans thought discriminating against African Americans and Women was also a great idea. Not long ago lots of Americans though driving a gas guzzling pickup truck that spewed clouds of exhaust, made lots of noise and kicked up dirt, that got 12 miles per gallon was a convincing testament to the owner’s manhood. And lots of Americans in the deep South thought lynching Black people was also really terrific. Americans’ fixation on owning guns is part of the same sick mythology of the shoot-em up world of The Wild West, with an amazing array of Americans buying into John Wayne and Dirty Harry movie plot lines as though they had something to do with reality. I read a Facebook post recently from a would-be vigilante who said he would have “taken out” the Aurora killer with his own handgun if he had had been there. “Taken out” is used in speech if it were an invitation to go for a walk, instead of blowing someone brains out and splattering them on the wall while their everyone watched. It is a kind of cultural sickness.  Instead of being a cause for chest thumping, is should be a source of deep humiliation. It will be eventually, but probably not in my lifetime. 

 

According to the Office of Juvenille Justice and Delinquency Prevention, there are approximately 44 million gun owners in the United States.  This means that 25 percent of all adults, and 40 percent of American households, own at least one gun. These owners possess 192 million guns, of which 65 million are handguns. No one knows precisely how many gang members and other criminals own guns purchased through gun shows, obtained through legal gun stores, obtained through “straw purchases” in gun stores, or on-line. Essentially all gang-members own guns.  Among the on-line gun dealers are thegunsource.com, gunbroker.com, budsgunshop.com the galleryofguns.com and many more.  There is basically no meaningful regulation of gun purchases in the United States, including automatic weapons.  None.  In Texas and Virginia people buy guns in large quantitites, walk out of the store and re-sell them to distributors who sell them on the streets all over the country.  Then they walk back into the same gun store and buy another 20 or 40 guns and repeat the sale to dealers. 

Only in America could this pathetic scene play out.  If Congress and the US President continue to fail to act on personal ownership of guns and bullets, the very fabric of the country is in jeopardy.  No exaggeration.  Public confidence in the ability of the government to assure the safety and well being of the American people is progressively unraveling, which can lead eventually to anarchy.  Mayor Michael Bloomberg of New York has the right idea, it’s at least a start.  As usual in America, a political response will eventually come with great delay, with inadequate effectiveness, and incrementally.  Lets hope the foundation of our government holds together in the mean time.